Many times, people have sent me videos to watch and articles to read underlined with the imperative, 'you have to watch/read this.' Most of the time I am disappointed at not having learned anything new.
This short video is truly different (http://tinyurl.com/673gefd ) and is guaranteed to inspire and uplift. If you are at all feeling down at the moment, if you or your child are going through a rough patch, well, I suggest you get a nice cup of tea and absorb the message of Carly Fleischmann, the hope and the love and the pure awesomeness!
I have no need to embellish this short video about the amazing Carly Fleischmann.
Just watch it and share it with others and remember it the next time someone tries to say our children are 'autistic' like that means something negative!
ENJOY
http://tinyurl.com/673gefd (video)
http://carlysvoice.com/ (Carly's amazing website)
"Don't give up, your inner voice will find it's way out, mine did".
Carly Fleischmann
http://carlysvoice.com/
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Saturday, June 18, 2011
Friday, June 17, 2011
Edmonton Father Guilty of (Severely) Abusing Autistic Son
A 59 year old Edmonton father has been found guilty of abusing his autistic son. He was convicted of unlawful confinement, failing to provide the necessaries of life, assault with a weapon and assault. Alexandra Zabjek of the Edmonton Journal reports that the son's situation came to the attention of police when his two older sisters returned home to visit after having left the family home a few years earlier. They found him unresponsive, emaciated and chained in a room with a urine soaked mattress.
"Police officers, paramedics, and an emergency room doctor who treated the teenager told court during the trial that he looked "like a concentration camp victim."Court heard the teenager weighed 86 pounds when he arrived at the Glenrose Hospital for rehabilitation. He was five-feet, seven-inches tall. His muscles had atrophied, he suffered from bed sores, and his arms and legs were stuck in a curled-up position. He couldn't initially stand. The teenager gained 10 pounds in the five days immediately after he was taken into care, court heard."
The Edmonton Journal also reports that the man testified in his own defence and claimed that he locked his son in the room because of " episodes and reactions to his mother". The man also denied specific allegations brought by the sisters that he had hit his son with a coat hanger and a shoe. He testified the son received three meals a day. Obviously the son's condition was the most powerful evidence, evidence that spoke for itself, irrefutable evidence of abuse.
What the Edmonton Journal article does not mention is whether the man testified about why he and his wife kept his autistic son in their home when they could not properly care for him.
Why keep their son in their home while he deteriorated in front of their eyes instead of asking the Province to take care of him or to provide help in taking care of him?
Thursday, June 9, 2011
Maeng Family and Son with Autism Will Not be Deported from Canada!
VIKTOR PIVOVAROV/TIMES & TRANSCRIPT
The deportation order for the Maeng family of Moncton New Brunswick, Canada has been rescinded. The family is no longer facing deportation because of their son's autism and epilepsy. The federal government rescinded the order after the Province of New Brunswick confirmed confirmed it will cover the health costs associated with the family's autistic son Sung-Joo Maeng 15.
It feels good to be a New Brunswicker. It feels good, once again, to be Canadian. We have done the right thing by these good people. We have done the right thing for Sung-Joo Maeng.
Tuesday, June 7, 2011
Don Davies, MP Vancouver Kingsway, Stands Up for Moncton's Maeng Family
Yes a member of Parliament has spoken up in the House of Commons on behalf of the Maeng family, the Korean family, residents of Moncton New Brunswick for several years, and contributing members of that community, who are facing imminent deportation because their younger son has autism and epilepsy. No it is not the Conservative Member of Parliament from Moncton, Robert Goguen, who has made no public comment on the serious threat facing the Maeng family and their 15 year old autistic son. It was Vancouver Kingsway NDP MP Don Davies who asked the Minister of Citizenship and Immigration to review this troubling decision, a decision of which many Canadians are ashamed:
Mr. Don Davies (Vancouver Kingsway, NDP): Mr. Speaker, the people of Moncton are shocked to learn that some very respected members of their community are facing deportation.
The Maeng family have put down firm roots since moving to Canada eight years ago. They have built their own business, and their eldest son is studying to become a dentist.
However, despite having disclosed their younger son's health problems from the outset, they are now being told his autism and epilepsy disqualify them from permanent residency.
Will the minister commit to reviewing this troubling decision on humanitarian and compassionate grounds?
It is encouraging to see a Member of Parliament standing up for the Maeng family. It is sad though that an MP from Canada's other coast has taken up their cause while local MP's remain silent.
Thank you Mr. Davies.
Monday, May 30, 2011
Kung Fu Panda 2, Trail Walking and Conor's Autism Progress
Conor Enjoyed Watching Kung Fu Panda 2 in 3D ... and so did Mom and Dad
In the early evening Conor and Dad got some fresh air and
enjoyed the view on a trail walk along the St. John River
Yesterday was a great outdoors day for Conor with long trail walks in the morning with Mom and early evening with Dad. He was able to enjoy lots of fresh air and .... always a good thing ... was able to burn off lots of energy. In the afternoon though Conor, Mom and Dad all headed to the movies to see Kung Fu Panda 2 in 3D. Conor watched the entire movie quietly with no sign of discomfort. KFP2 was the latest in a series of theater trips which began about a year ago with Toy Story 3 and Shrek 4. Conor's movie attendance has been a sign of progress in that he was unable for several years to sit in a movie theater without leaving very early overstimulated and overwhelmed. He just had to see the Toy Story 3 and Shrek 4 movies though and he started going to the movies, and enjoying them, again.
School has made a big difference as well. Conor had been increasingly, but selectively, exposed to stimulating common environments by his excellent education assistant throughout his middle school years. In his first year of high school part of each day is now spent in a Resource Center and other common environments, the library, cafeteria and a district swimming pool, where Conor interacts with other students and staff. He recently attended a school outing at the Kingswood bowling facility. His educational assistant brought headphones but they were not needed and Conor bowled with the other students and had lots of fun.
Conor is 15 and his progress in being able to function in environments with lots of noise and activity has been substantial. Yesterday it included Jack Black and a cast of prominent actors providing voices for a movie which Conor enjoyed ... almost as much as I did.
Monday, May 2, 2011
Cold and Rainy AGAIN...
By the time May rolls around each year, I should not still be thankful for having heated seats in my SUV but this year, I am. Oh yes, I actually did an internal happy dance when I got in the truck out of the rain at Walgreens today after stopping off for a Redbox movie to keep the kids occupied since goodness knows I am not going out in this weather for them to play.
It's 48 degrees outside and I nearly shed a tear when the heat kicked on in the house this morning. I really don't know how much more cold weather I can handle. I want sun. I want heat. I want to walk around outside without my winter coat on. I need to feel my skin tingling, knowing I am getting a dose of vitamin D for the day.
Recently, I stumbled upon Dwija's House Unseen. Life Unscripted. blog and am strangely drawn to the mundane goings on of her family and their remodeling projects. Maybe it's because it's a mundane different than my own mundane. Or maybe it is because she is thrifty, like me. It could be because she is so funny. Yes, she is really funny - you should trot on over and check out her little piece of the world. I advise reading from the very beginning.
What confounds me the most about Dwija though, is her love for Michigan's change of seasons and what each of them brings. As someone who has lived all but three years and several summers of my nearly forty years in Indiana, I am done - DONE, I tell you - with this cold weather. Believe me, if I could pick up my family and move, I would convince my husband it's for the best. But I can't and we can thank autism in part for that....but I'll save that explanation for another day.
So Dwija, or Dweej, as she signs her posts, seems fascinated by the dramatic change of seasons. She has been in Michigan for around a year. I have to question if she will be singing the same tune several years from now when she and her family have endured year after year after god-awful cold year of living in the tundra, as we do here in Indiana. I'm reading, Dwija, and you can bet I'll stay tuned to find out if you are still loving things in July...you know, when we are all still waiting around for Spring's arrival with heat wave temperatures of maybe 50 degrees.
I know, I'm an optimist. It's what I do. If you want real optimism, go visit Dwija.
It's 48 degrees outside and I nearly shed a tear when the heat kicked on in the house this morning. I really don't know how much more cold weather I can handle. I want sun. I want heat. I want to walk around outside without my winter coat on. I need to feel my skin tingling, knowing I am getting a dose of vitamin D for the day.
Recently, I stumbled upon Dwija's House Unseen. Life Unscripted. blog and am strangely drawn to the mundane goings on of her family and their remodeling projects. Maybe it's because it's a mundane different than my own mundane. Or maybe it is because she is thrifty, like me. It could be because she is so funny. Yes, she is really funny - you should trot on over and check out her little piece of the world. I advise reading from the very beginning.
What confounds me the most about Dwija though, is her love for Michigan's change of seasons and what each of them brings. As someone who has lived all but three years and several summers of my nearly forty years in Indiana, I am done - DONE, I tell you - with this cold weather. Believe me, if I could pick up my family and move, I would convince my husband it's for the best. But I can't and we can thank autism in part for that....but I'll save that explanation for another day.
So Dwija, or Dweej, as she signs her posts, seems fascinated by the dramatic change of seasons. She has been in Michigan for around a year. I have to question if she will be singing the same tune several years from now when she and her family have endured year after year after god-awful cold year of living in the tundra, as we do here in Indiana. I'm reading, Dwija, and you can bet I'll stay tuned to find out if you are still loving things in July...you know, when we are all still waiting around for Spring's arrival with heat wave temperatures of maybe 50 degrees.
I know, I'm an optimist. It's what I do. If you want real optimism, go visit Dwija.
Thursday, March 31, 2011
Light It Up Blue? No, Thank You!
Tomorrow, April 1st, Autism Speaks will kick off their 2nd annual Light It Up Blue campaign to celebrate World Autism Awareness Day. Thousands, and possibly millions, of individuals and businesses will take part in the campaign to shine the light on autism and awareness of its growing prevalence in children. Participants will get involved in a variety of ways that include wearing blue clothing, changing Facebook profile pics to the "Light It Up Blue" banner, downloading an iPhone app, and many other ways. The most obvious and likely the most popular route to shed a blue light on autism awareness will be by doing just that - displaying blue lights.
Sounds like a really noble cause, right?
Well, before you head out to the local Home Depot (or anywhere else) and plunk down a few bucks for those blue lightbulbs, let's take a look at the organization behind the Light It Up Blue campaign.
The motto for Autism Speaks is "Autism Speaks. It's time to listen." They are correct - at a rate of 1 in 110 (according to the Centers for Disease Control's average - although many research organizations will quote the rate being more frequent than that) children being diagnosed, with boys being four times as likely as girls to be diagnosed, yes, it is indeed time for someone to start listening. But for whom is Autism Speaks speaking? And to who is Autism Speaks listening? Is it those who are affected by autism? Or to those who line their seemingly very deep pockets?
Autism Speaks raises millions and millions of dollars per year - to the tune of around forty-five million dollars in 2009. But where exactly does all that money go?
Charity Navigator is a non-profit organization whose mission is to facilitate intelligent charitable contributions by providing factual, unbiased information on charities based on their financial efficiency. Charitable organizations found on Charity Navigator are evaluated based on the IRS Statistics of Income. In other words, the information found on the Charity Navigator website is based in large part on a charity's IRS reportings.
With that said, one can compare how Autism Speaks rates in comparison to other large, well-known charities. Let's start with location.
Autism Speaks has chosen some prime real estate for their New York City office, but in order to hide the fact that their main office is located on Park Avenue, they apparently rely on those of us outside of New York City to be unfamiliar with which streets intersect others. On their website, Autism Speaks lists their main office address as 1 East 33rd Street. The Charity Navigator website lists the Autism Speaks address as 2 Park Avenue. Someone obviously has their information incorrect here. Or do they? According to Google maps, guess which street intersects at 1 East 33rd Street? Park Avenue! Call it 33rd Street if you want, but that is Park Avenue, baby!
A charitable organization on Park Avenue? Really? Autism Speaks couldn't find a suitable office space in a less expensive location than one that rubs shoulders with the likes of HSBC Bank (one of the world's largest banks with assets close to 200 billion dollars) and credit card giant Chase Bank?
Let's talk revenue versus expenses. As I mentioned earlier, in 2009, Autism Speaks reported revenues of roughly forty-five million dollars. Their expenses were over forty-three million dollars. Those incredibly poor financial statistics earned them an overall rating of one out of a possible four stars by Charity Navigator for their Efficiency Rating.
Even not-for-profit organizations have to pay their employees and executives. We cannot expect people to be so giving to go out and perform a highly stressful job without compensating them, but how does Autism Speaks rate? How much does the average executive working at a non-profit organization make per year?
Since it wouldn't be fair to compare salaries alone due to factors such as an organization's location and cost of living for that location, it is better to compare the differences in relation to what percentage of an organization a particular executive's salary takes up, as does the Charity Navigator website.
To compare the salaries of the two executives listed by Autism Speaks on the Charity Navigator website to other non-profit executives, I picked three charities certainly everyone has heard of: American Red Cross, American Heart Association, and St. Jude Children's Research Hospital. Even the salary of American Heart Association's former executive director and CEO who weighed in with the highest salary (again, based on percentage of the organization's expenses) of the three organizations - a salary equal to 0.17% of the organization's yearly expenses - does not come close to the 0.93% of expenses Autism Speaks paid out to Dr. Geri Dawson, Chief Science Officer. American Red Cross paid their execs salaries equal to an average of 0.01% of their expenses and St. Jude Children's Research Hospital's highest paid listed executive made just 0.08% of their overall expenses.
If I could just go off on a tangent here (because it just wouldn't be right for me to bring up the name of someone involved in the science behind autism without mentioning vaccines), Dr. Dawson seems a bit confused, herself, on the vaccine stance that Autism Speaks has notably taken over the years. Autism Speaks has held strongly to the belief that vaccines and autism cannot possibly have any link to one another, yet, Dr. Dawson contradicts herself in an interview conducted with her in 2009.
A few snippets from the interview: She stated, "It remains scientifically plausible that the challenge to the immune system resulting from a vaccine (or other immunological challenges) could, in susceptible individuals, have adverse consequences for the developing brain."
She goes on further to say, "Evidence does not support the theory that vaccines are causing an autism epidemic. However, it is plausible that specific genetic or medical factors that are present in a small minority of individuals might lead to an adverse response to a vaccine and trigger the onset of autism symptoms."
I'm sorry, but isn't admitting that individuals who experience an adverse response to a vaccine that triggers the onset of autism symptoms very similar to saying that, had those individuals not received vaccines, they would not have had the adverse response that ultimately triggered the autism symptoms?
So where else does all that money go that Autism Speaks raises every year? It does not go to individuals or families affected by autism and they have no problem admitting to that fact. In their own words, Autism Speaks states "Autism Speaks does not award grants to individuals or fund an individual or family for participation in personal programs."
So again, I ask, to whom is Autism Speaks listening? It sure isn't my family. If they were listening to me, they would practice some common sense frugality by moving their offices to somewhere with less notoriety than an address that probably 90% of the world's population has heard of. If they were listening to me, they would pay their executives less money and get someone in there who can work out a better ratio of revenue to expenses. But most importantly, if they were listening to me, they would put families first. If one of their main objectives is to bring awareness to autism, why not expand that awareness to the devastating financial effects autism has on families and assist them in a more direct financial way?
As far as Autism Speaks speaking, they certainly do not speak for my family either as they have done nothing for my son. Sure, they bring awareness to autism but at a very obviously high pricetag. And who needs awareness at a price? My family is very aware of autism on a daily basis....for FREE!
Sounds like a really noble cause, right?
Well, before you head out to the local Home Depot (or anywhere else) and plunk down a few bucks for those blue lightbulbs, let's take a look at the organization behind the Light It Up Blue campaign.
The motto for Autism Speaks is "Autism Speaks. It's time to listen." They are correct - at a rate of 1 in 110 (according to the Centers for Disease Control's average - although many research organizations will quote the rate being more frequent than that) children being diagnosed, with boys being four times as likely as girls to be diagnosed, yes, it is indeed time for someone to start listening. But for whom is Autism Speaks speaking? And to who is Autism Speaks listening? Is it those who are affected by autism? Or to those who line their seemingly very deep pockets?
Autism Speaks raises millions and millions of dollars per year - to the tune of around forty-five million dollars in 2009. But where exactly does all that money go?
Charity Navigator is a non-profit organization whose mission is to facilitate intelligent charitable contributions by providing factual, unbiased information on charities based on their financial efficiency. Charitable organizations found on Charity Navigator are evaluated based on the IRS Statistics of Income. In other words, the information found on the Charity Navigator website is based in large part on a charity's IRS reportings.
With that said, one can compare how Autism Speaks rates in comparison to other large, well-known charities. Let's start with location.
Autism Speaks has chosen some prime real estate for their New York City office, but in order to hide the fact that their main office is located on Park Avenue, they apparently rely on those of us outside of New York City to be unfamiliar with which streets intersect others. On their website, Autism Speaks lists their main office address as 1 East 33rd Street. The Charity Navigator website lists the Autism Speaks address as 2 Park Avenue. Someone obviously has their information incorrect here. Or do they? According to Google maps, guess which street intersects at 1 East 33rd Street? Park Avenue! Call it 33rd Street if you want, but that is Park Avenue, baby!
A charitable organization on Park Avenue? Really? Autism Speaks couldn't find a suitable office space in a less expensive location than one that rubs shoulders with the likes of HSBC Bank (one of the world's largest banks with assets close to 200 billion dollars) and credit card giant Chase Bank?
Let's talk revenue versus expenses. As I mentioned earlier, in 2009, Autism Speaks reported revenues of roughly forty-five million dollars. Their expenses were over forty-three million dollars. Those incredibly poor financial statistics earned them an overall rating of one out of a possible four stars by Charity Navigator for their Efficiency Rating.
Even not-for-profit organizations have to pay their employees and executives. We cannot expect people to be so giving to go out and perform a highly stressful job without compensating them, but how does Autism Speaks rate? How much does the average executive working at a non-profit organization make per year?
Since it wouldn't be fair to compare salaries alone due to factors such as an organization's location and cost of living for that location, it is better to compare the differences in relation to what percentage of an organization a particular executive's salary takes up, as does the Charity Navigator website.
To compare the salaries of the two executives listed by Autism Speaks on the Charity Navigator website to other non-profit executives, I picked three charities certainly everyone has heard of: American Red Cross, American Heart Association, and St. Jude Children's Research Hospital. Even the salary of American Heart Association's former executive director and CEO who weighed in with the highest salary (again, based on percentage of the organization's expenses) of the three organizations - a salary equal to 0.17% of the organization's yearly expenses - does not come close to the 0.93% of expenses Autism Speaks paid out to Dr. Geri Dawson, Chief Science Officer. American Red Cross paid their execs salaries equal to an average of 0.01% of their expenses and St. Jude Children's Research Hospital's highest paid listed executive made just 0.08% of their overall expenses.
If I could just go off on a tangent here (because it just wouldn't be right for me to bring up the name of someone involved in the science behind autism without mentioning vaccines), Dr. Dawson seems a bit confused, herself, on the vaccine stance that Autism Speaks has notably taken over the years. Autism Speaks has held strongly to the belief that vaccines and autism cannot possibly have any link to one another, yet, Dr. Dawson contradicts herself in an interview conducted with her in 2009.
A few snippets from the interview: She stated, "It remains scientifically plausible that the challenge to the immune system resulting from a vaccine (or other immunological challenges) could, in susceptible individuals, have adverse consequences for the developing brain."
She goes on further to say, "Evidence does not support the theory that vaccines are causing an autism epidemic. However, it is plausible that specific genetic or medical factors that are present in a small minority of individuals might lead to an adverse response to a vaccine and trigger the onset of autism symptoms."
I'm sorry, but isn't admitting that individuals who experience an adverse response to a vaccine that triggers the onset of autism symptoms very similar to saying that, had those individuals not received vaccines, they would not have had the adverse response that ultimately triggered the autism symptoms?
So where else does all that money go that Autism Speaks raises every year? It does not go to individuals or families affected by autism and they have no problem admitting to that fact. In their own words, Autism Speaks states "Autism Speaks does not award grants to individuals or fund an individual or family for participation in personal programs."
So again, I ask, to whom is Autism Speaks listening? It sure isn't my family. If they were listening to me, they would practice some common sense frugality by moving their offices to somewhere with less notoriety than an address that probably 90% of the world's population has heard of. If they were listening to me, they would pay their executives less money and get someone in there who can work out a better ratio of revenue to expenses. But most importantly, if they were listening to me, they would put families first. If one of their main objectives is to bring awareness to autism, why not expand that awareness to the devastating financial effects autism has on families and assist them in a more direct financial way?
As far as Autism Speaks speaking, they certainly do not speak for my family either as they have done nothing for my son. Sure, they bring awareness to autism but at a very obviously high pricetag. And who needs awareness at a price? My family is very aware of autism on a daily basis....for FREE!
Wednesday, March 30, 2011
Northern Ireland Trust Breaches Obligation to Autistic Child
http://www.bbc.co.uk/news/uk-northern-ireland-12878909
28 March 2011
Mr Justice McCloskey granted a declaration that the authority failed to take steps to help the boy lead as normal a life as possible.
His parents funded support for three years until they ran out of money.
They claimed there was a breach of duty under the Children (NI) Order 1995.
The child, now aged 10, and the trust cannot be identified for legal reasons.
The court heard how no assessment of the boy's development was conducted from his birth until 2009.
No services were offered either, apart from occupational therapy, physiotherapy and speech and language therapy.
The boy's parents were informed by a social worker of the availability of respite services but declined to use them.
In 2005 they became aware of the Centre for Early Autism Treatment (CEAT) and an Applied Behavioural Analysis (ABA) it provided.
The programme was delivered by trained therapists from November 2005 to April 2009 at a total cost of £38,391.15 to the parents.
Vindication
They were said to have continued funding it because of perceived positive developments in their son.
When it ceased because they could no longer afford to pay for it, they began extensive correspondence with the trust seeking support funding for an ABA programme or comparable services aimed at maximising their son's life skills and minimising disruptive tendencies.
The trust responded by carrying out an Understanding the Needs of Children in Northern Ireland (UNOCINI) report which concluded the child could benefit from respite support services.
It noted that the parents agreed with a recommendation for 20 hours a month of direct payments for respite support.
However, the family became dissatisfied and alleged that the UNOCINI assessment was limited to such care.
They claimed it failed to address their child's needs in developing positive life skills and discouraging disruptive behaviour.
Granting a declaration in the judicial review case, Mr Justice McCloskey said the trust breached its obligations by failing to assess the needs of a child in need, and provide services designed to minimise the effect of his disabilities and the opportunity to lead as normal a life as possible.
Nicholas Quinn, of McEvoy Sheridan Solicitors, who represented the family, said the parents were satisfied with the outcome, but also disappointed that proceedings were necessary to ensure their child secured his legal entitlement.
He added: "The outcome of the proceedings represents a clear vindication of the parents' decision to bring the proceedings before the court.
"The declaration should now be considered carefully by all the health and social care trusts in Northern Ireland to ensure that children who the law recognises to be in need receive the necessary services according to their individual assessed needs." "
There are more than a number of issues and unanswered questions arising from this article:-
1. Which Trust did this happen in, why the secrecy?
2. What support was provided to this family and child from the ABA provider (CEAT) and from the Education Board after the family had spent all of their money? For their £40,000 spent, were the parents trained up enough to carry out the program themselves? There are ABA trained employees within various education boards. Did they fulfill their obligation and step in to help educate this child? What about those parents who don't have £40,000 to spare? Why couldn't the Education Board provide what this child needed?
3. If you have been forced to buy private services from an autism intervention provider you too, may have a similar case and be able to sue your local health trust or education board for dereliction of duty!
4. Why do parents have to go to the High Court and spend their life savings in the private sector, in order to educate their children?
The very 'precious' attitude of so-called autism 'professionals' out there has got to stop. The negative attitude of Northern Ireland towards ABA or any early intensive behavioural intervention (EIBI) for children with autism is a result of fear and ignorance on the part of 'professionals'. They don't know now to provide ABA (aren't trained) and its far easier to criticise it, or just tell you, the parent, that your child has autism and throw their hands up.
They will continue to do this and they will continue to persuade you to believe your child doesn't need intensive autism specific evidence based teaching until you, the parent challenge the system here that believes your child is not capable of learning or does not 'need' such interventions. (despite the rest of the world saying your child does need them.)
Instead, what you may receive here is a watered down TEACCH program, with no supervision, no evidence, no measurement and potentially, very little success for your child. Or worse, your child's teacher will tell you 'we use what works', whatever that means. You will be told by teachers who have taken a five day course in TEACCH, that they are fully qualified to teach your child and address his core difficulties. You won't ever get an explanation of what those difficulties are or how they will address them, you will just be 'assured' with great hyperbole and enthusiasm. Your child's teacher may tell you, 'as long as s/he is happy.' When you ask the teacher how they prove this or that 'works', the subject will quickly change.
It's just not good enough. You won't find out how inappropriate TEACCH is until your child turns 18 and is still living at home with you, with no hope of an independent life. Those same teachers who 'taught' your child with TEACCH will say, 'sure didn't your child have autism? What did you expect?". Good question though, what do you 'expect'? What are the expectations you have for your child? Clearly the parents in the article have high expectations and went into serious debt in order to fulfill the expectations they had for their son. All parents have high expectations for their children but over time, so many parents are beaten down by others and their negative attitudes and it all can become just too difficult to fight anymore. There will always be someone around who will enable you, to convince you to accept the crumbs on offer.
In fact, there are plenty of people you meet every day including other parents and professionals who may be lying to you, who have invested in the lie that your child will not achieve, will not live independently, will not learn, will not have a job, etc etc. Parents whose own children have suffered the irresponsible 'treatment' plans of ill-trained speech therapists and teachers might be feeling guilt and anger about their own children, when they see other children doing well and children who have received the best interventions. It must be painful for some parents to read the article above, knowing that the parents of this child fought for what they believed their child needed. How is it that some parents with a child who have autism will fight all the way to the High Court for their child and others will accept what is offered them?
It's a safe bet that if you fight for the right to ABA or another intensive intervention program for your child that there will be parents and professionals who will try to dissuade you. What is it about the parents in the article that made them fight in the first place? What do they know that many of you may not know?
There are professionals out there, speech therapists, paediatricians, teachers who consider themselves 'experts' who haven't read a new piece of research in years, who are stuck in a rut, who don't have the time to engage in new thinking, and whose egos would be dented should someone suggest that the children they work with might be helped in a 'better', measurable and scientific way.(...by the way, what exactly does a speech therapist do and why are they involved with our children? Our children's social communication difficulties do not fall into the remit of speech and language!)
Yet, you can't stop progress and the article above is testimony to that. Northern Ireland is slowly moving forward, finally. If you are a parent, I strongly urge you to stop listening to those people, be they parent or professional who don't believe in your child and who won't or don't support you in finding the best way to help him/her or who use money or the lack of money as an excuse to not help your child.
Maybe we should start identifying the people in our children's lives who are truly helpful and also those who are damaging them, sometimes on purpose, sometimes through sheer ignorance. Plenty of those 'damaging' and enabling people will give you sympathy when your child is 18, living at home and can't tie his shoes. How many of them will encourage you now though, to help your child to be the very best he or she can be with the best interventions and education programs available?
If you really thought about this, you might find yourself crossing some names off of your Christmas card list. You might, however, be helping all those children who will be diagnosed in the future. They deserve an appropriate education delivered in a way that a child with autism can understand and use. Applied Behaviour Analysis - it's nothing to be afraid of. I think that those who deny it to children in Northern Ireland, truly do know what it is, and they deny it based on the high cost of delivering it.
In my opinion ABA/EIBI needs to be classed as a medical intervention. It needs to be absorbed and taken away from the private providers and offered by the education boards to any family who wants it. Families should not have to use their life savings. Our children have to stop being someone else's commodity or excuse for inaction.
It's going to happen, eventually, so I suggest to the Health Trusts and to the Education Boards to get your affairs in order and prepare for an onslaught of empowered parents who are not going to take no for an answer where ABA is concerned. Parents shouldn't be expected to re-mortgage their homes to pay for private ABA providers. ABA can be taught in homes and in schools just as easily as some of the other so-called 'autism interventions' like TEACCH, etc.
ABA needs to come 'out of the closet', it's not rocket science and once you get past the jargon and the often deliberate obfuscation of very simple concepts, (aka good parenting) any parent could potentially run an ABA program and live the program in their daily life with their children. Parents will and have spent every last penny they have in the belief that what they are buying will help their children. Health Trusts together with Education currently waste incredible amounts of money on useless autism awareness courses for parents, few of which supply a parent with real tools to help their children learn or tools to help teachers teach our children. If your child was diagnosed with cancer (don't like this analogy but it serves a purpose here) you wouldn't be expected to pay £40,000 for treatment. We have politicians duly elected by the democratic process who have passed laws protecting and enshrining your child's rights in law. Our children have the right to a full and happy life like any other child. Why is this right more a privilege for the well heeled where our children are concerned?
As an aside, where is the much lauded Autism Bill in all of this? The bill will enshrine nothing, will guarantee nothing and when it passes certainly will not be securing your child an appropriate education or intervention model. There is no money for autism and no amount of autism bills will legislate forking out £40,000 per child for ABA.
As a parent, you are the change and plenty of you out there are effectively advocating for your children. Where autism is concerned, it will only ever be parents who bring in positive change.
For the rest of you, please remember that no one will come knocking on your door to provide your child with a selection of educational options. You have to demand it, you have to argue your child's case for it. All of our children and the children of the future are counting on you. The alternative is ....what?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
If you want to know more about Applied Behaviour Analysis and want to be a parent/educator in ABA see PEAT (Parents Education as Autism Therapists) http://www.peatni.org/ It's Northern Ireland based and it's a charity. You can become a member, and even join their committee. If you want ABA for your child, PEAT is your first port of call in Northern Ireland.
More resources for Applied Behaviour Analysis: http://rsaffran.tripod.com/aba.html
"Let Me Hear Your Voice", a wonderful book about ABA, providing real resources for setting up your own
home-program - by Catherine Maurice: http://www.amazon.co.uk/Let-Me-Hear-Your-Voice/dp/0709063466/ref=sr_1_1?ie=UTF8&qid=1301483580&sr=8-1
Free materials to help your child learn social communication through Verbal Behaviour, The Mariposa School: http://www.mariposaschool.org/learning-materials
28 March 2011
A health trust breached its obligations to provide services to an autistic child whose parents spent nearly £40,000 on private support, a High Court judge has ruled.
His parents funded support for three years until they ran out of money.
They claimed there was a breach of duty under the Children (NI) Order 1995.
The child, now aged 10, and the trust cannot be identified for legal reasons.
The court heard how no assessment of the boy's development was conducted from his birth until 2009.
No services were offered either, apart from occupational therapy, physiotherapy and speech and language therapy.
The boy's parents were informed by a social worker of the availability of respite services but declined to use them.
In 2005 they became aware of the Centre for Early Autism Treatment (CEAT) and an Applied Behavioural Analysis (ABA) it provided.
The programme was delivered by trained therapists from November 2005 to April 2009 at a total cost of £38,391.15 to the parents.
Vindication
They were said to have continued funding it because of perceived positive developments in their son.
When it ceased because they could no longer afford to pay for it, they began extensive correspondence with the trust seeking support funding for an ABA programme or comparable services aimed at maximising their son's life skills and minimising disruptive tendencies.
The trust responded by carrying out an Understanding the Needs of Children in Northern Ireland (UNOCINI) report which concluded the child could benefit from respite support services.
It noted that the parents agreed with a recommendation for 20 hours a month of direct payments for respite support.
However, the family became dissatisfied and alleged that the UNOCINI assessment was limited to such care.
They claimed it failed to address their child's needs in developing positive life skills and discouraging disruptive behaviour.
Granting a declaration in the judicial review case, Mr Justice McCloskey said the trust breached its obligations by failing to assess the needs of a child in need, and provide services designed to minimise the effect of his disabilities and the opportunity to lead as normal a life as possible.
Nicholas Quinn, of McEvoy Sheridan Solicitors, who represented the family, said the parents were satisfied with the outcome, but also disappointed that proceedings were necessary to ensure their child secured his legal entitlement.
He added: "The outcome of the proceedings represents a clear vindication of the parents' decision to bring the proceedings before the court.
"The declaration should now be considered carefully by all the health and social care trusts in Northern Ireland to ensure that children who the law recognises to be in need receive the necessary services according to their individual assessed needs." "
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There are more than a number of issues and unanswered questions arising from this article:-
1. Which Trust did this happen in, why the secrecy?
2. What support was provided to this family and child from the ABA provider (CEAT) and from the Education Board after the family had spent all of their money? For their £40,000 spent, were the parents trained up enough to carry out the program themselves? There are ABA trained employees within various education boards. Did they fulfill their obligation and step in to help educate this child? What about those parents who don't have £40,000 to spare? Why couldn't the Education Board provide what this child needed?
3. If you have been forced to buy private services from an autism intervention provider you too, may have a similar case and be able to sue your local health trust or education board for dereliction of duty!
4. Why do parents have to go to the High Court and spend their life savings in the private sector, in order to educate their children?
The very 'precious' attitude of so-called autism 'professionals' out there has got to stop. The negative attitude of Northern Ireland towards ABA or any early intensive behavioural intervention (EIBI) for children with autism is a result of fear and ignorance on the part of 'professionals'. They don't know now to provide ABA (aren't trained) and its far easier to criticise it, or just tell you, the parent, that your child has autism and throw their hands up.
They will continue to do this and they will continue to persuade you to believe your child doesn't need intensive autism specific evidence based teaching until you, the parent challenge the system here that believes your child is not capable of learning or does not 'need' such interventions. (despite the rest of the world saying your child does need them.)
Instead, what you may receive here is a watered down TEACCH program, with no supervision, no evidence, no measurement and potentially, very little success for your child. Or worse, your child's teacher will tell you 'we use what works', whatever that means. You will be told by teachers who have taken a five day course in TEACCH, that they are fully qualified to teach your child and address his core difficulties. You won't ever get an explanation of what those difficulties are or how they will address them, you will just be 'assured' with great hyperbole and enthusiasm. Your child's teacher may tell you, 'as long as s/he is happy.' When you ask the teacher how they prove this or that 'works', the subject will quickly change.
It's just not good enough. You won't find out how inappropriate TEACCH is until your child turns 18 and is still living at home with you, with no hope of an independent life. Those same teachers who 'taught' your child with TEACCH will say, 'sure didn't your child have autism? What did you expect?". Good question though, what do you 'expect'? What are the expectations you have for your child? Clearly the parents in the article have high expectations and went into serious debt in order to fulfill the expectations they had for their son. All parents have high expectations for their children but over time, so many parents are beaten down by others and their negative attitudes and it all can become just too difficult to fight anymore. There will always be someone around who will enable you, to convince you to accept the crumbs on offer.
In fact, there are plenty of people you meet every day including other parents and professionals who may be lying to you, who have invested in the lie that your child will not achieve, will not live independently, will not learn, will not have a job, etc etc. Parents whose own children have suffered the irresponsible 'treatment' plans of ill-trained speech therapists and teachers might be feeling guilt and anger about their own children, when they see other children doing well and children who have received the best interventions. It must be painful for some parents to read the article above, knowing that the parents of this child fought for what they believed their child needed. How is it that some parents with a child who have autism will fight all the way to the High Court for their child and others will accept what is offered them?
It's a safe bet that if you fight for the right to ABA or another intensive intervention program for your child that there will be parents and professionals who will try to dissuade you. What is it about the parents in the article that made them fight in the first place? What do they know that many of you may not know?
There are professionals out there, speech therapists, paediatricians, teachers who consider themselves 'experts' who haven't read a new piece of research in years, who are stuck in a rut, who don't have the time to engage in new thinking, and whose egos would be dented should someone suggest that the children they work with might be helped in a 'better', measurable and scientific way.(...by the way, what exactly does a speech therapist do and why are they involved with our children? Our children's social communication difficulties do not fall into the remit of speech and language!)
Yet, you can't stop progress and the article above is testimony to that. Northern Ireland is slowly moving forward, finally. If you are a parent, I strongly urge you to stop listening to those people, be they parent or professional who don't believe in your child and who won't or don't support you in finding the best way to help him/her or who use money or the lack of money as an excuse to not help your child.
Maybe we should start identifying the people in our children's lives who are truly helpful and also those who are damaging them, sometimes on purpose, sometimes through sheer ignorance. Plenty of those 'damaging' and enabling people will give you sympathy when your child is 18, living at home and can't tie his shoes. How many of them will encourage you now though, to help your child to be the very best he or she can be with the best interventions and education programs available?
If you really thought about this, you might find yourself crossing some names off of your Christmas card list. You might, however, be helping all those children who will be diagnosed in the future. They deserve an appropriate education delivered in a way that a child with autism can understand and use. Applied Behaviour Analysis - it's nothing to be afraid of. I think that those who deny it to children in Northern Ireland, truly do know what it is, and they deny it based on the high cost of delivering it.
In my opinion ABA/EIBI needs to be classed as a medical intervention. It needs to be absorbed and taken away from the private providers and offered by the education boards to any family who wants it. Families should not have to use their life savings. Our children have to stop being someone else's commodity or excuse for inaction.
It's going to happen, eventually, so I suggest to the Health Trusts and to the Education Boards to get your affairs in order and prepare for an onslaught of empowered parents who are not going to take no for an answer where ABA is concerned. Parents shouldn't be expected to re-mortgage their homes to pay for private ABA providers. ABA can be taught in homes and in schools just as easily as some of the other so-called 'autism interventions' like TEACCH, etc.
ABA needs to come 'out of the closet', it's not rocket science and once you get past the jargon and the often deliberate obfuscation of very simple concepts, (aka good parenting) any parent could potentially run an ABA program and live the program in their daily life with their children. Parents will and have spent every last penny they have in the belief that what they are buying will help their children. Health Trusts together with Education currently waste incredible amounts of money on useless autism awareness courses for parents, few of which supply a parent with real tools to help their children learn or tools to help teachers teach our children. If your child was diagnosed with cancer (don't like this analogy but it serves a purpose here) you wouldn't be expected to pay £40,000 for treatment. We have politicians duly elected by the democratic process who have passed laws protecting and enshrining your child's rights in law. Our children have the right to a full and happy life like any other child. Why is this right more a privilege for the well heeled where our children are concerned?
As an aside, where is the much lauded Autism Bill in all of this? The bill will enshrine nothing, will guarantee nothing and when it passes certainly will not be securing your child an appropriate education or intervention model. There is no money for autism and no amount of autism bills will legislate forking out £40,000 per child for ABA.
As a parent, you are the change and plenty of you out there are effectively advocating for your children. Where autism is concerned, it will only ever be parents who bring in positive change.
For the rest of you, please remember that no one will come knocking on your door to provide your child with a selection of educational options. You have to demand it, you have to argue your child's case for it. All of our children and the children of the future are counting on you. The alternative is ....what?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
If you want to know more about Applied Behaviour Analysis and want to be a parent/educator in ABA see PEAT (Parents Education as Autism Therapists) http://www.peatni.org/ It's Northern Ireland based and it's a charity. You can become a member, and even join their committee. If you want ABA for your child, PEAT is your first port of call in Northern Ireland.
More resources for Applied Behaviour Analysis: http://rsaffran.tripod.com/aba.html
"Let Me Hear Your Voice", a wonderful book about ABA, providing real resources for setting up your own
home-program - by Catherine Maurice: http://www.amazon.co.uk/Let-Me-Hear-Your-Voice/dp/0709063466/ref=sr_1_1?ie=UTF8&qid=1301483580&sr=8-1
Free materials to help your child learn social communication through Verbal Behaviour, The Mariposa School: http://www.mariposaschool.org/learning-materials
Thursday, March 3, 2011
Freedom!!!
I've got a feelin'...
That tomorrow's gonna be a good, good da-a-ay......woohooo!
(Anyone else out there a Peas fan too?)
Remember a few weeks back when I mentioned a BIG change we had coming our way?
Originally, I had not planned to spill the beans until this coming weekend but due to an unexpected turn of events, I have the freedom to go ahead and reveal the big surprise. Do not get too worked up - it is really only a big change for my family and not something others will find much excitement in knowing.
Are you ready?
(Drumroll...)
We are changing providers for Reiss's in-home ABA (applied behavior analysis) therapy program!
See, I warned you. Not terribly exciting, right? However, considering the intensity and numerous hours of ABA therapy Reiss puts in on a weekly basis, it is a big change for our family and one we are certainly looking forward to making.
The decision to change providers was not an easy one to make. Actually, the decision to change providers began not at all as a quest to find another provider but rather, as a mission to simply research other options in our area for in-home ABA and ABA centers should we decide to make a change in the future. After a series of events occurred and subsequent tension began to build between ourselves and our current provider, we felt it was best to really dig in and do our homework regarding looking into the other options we found available to us. There was the unfortunate tension building, but at that point, our efforts were still only meant to provide us with options in the event of a "what if" situation were to happen.
A funny thing happened along the way though, and once we began looking into several other options, including one center and three in-home providers, we became quite impressed with one particular provider who services our area. The more we talked with her, the more confident we felt that she was was a great option to go with now and not just to use later as a "just in case" option. It felt right and it felt like a change now was in our best interest after all. She was very open and honest with everything we asked of her. She made no qualms about meeting with me on two occasions. She did not skip a beat when asked to provide references of other families with whom she works. I, personally, checked each of her references not once or twice, but four separate times, calling them back whenever we thought of something else we would like to ask.
Tomorrow morning I will meet with our new provider and the two therapists she has hired to work with Reiss. I stress the number because our current provider has four therapists working with Reiss. At one time, we had six therapists working with him for a total of only thirty-five hours per week. At our best, we had three therapists. The unusually high number of therapists has always presented me with a level of frustration, as I knew from speaking with other parents whose children receive ABA through other providers that they typically had two therapists, and a maximum of three therapists for a full forty-hour week of therapy. If your own child receives ABA or has in the past, I would love your input as to the number of therapists you have/had and whether or not you feel more is better or less is best.
Next Monday, Reiss will meet his new therapists and begin therapy and a whole new fresh start. I am so excited for him and I am excited for my family, as it feels like we are about to embark on a totally new journey. I feel free and like a weight has been lifted from my shoulders.
It is almost as though the dreary and cloudy bitterness of winter has dissipated and the sun is shining and Spring has arrived. Well, until I remember that it will probably be around 30 degrees when I wake up tomorrow morning. But I'm on this high, so who cares if there is frost on the windows and the furnace continues to run non-stop for the next few weeks?
And now it's official. My high has caused me to babble meaninglessly about frosty windows and other nonsense. So I will leave with that.
To be continued...
That tomorrow's gonna be a good, good da-a-ay......woohooo!
(Anyone else out there a Peas fan too?)
Remember a few weeks back when I mentioned a BIG change we had coming our way?
Originally, I had not planned to spill the beans until this coming weekend but due to an unexpected turn of events, I have the freedom to go ahead and reveal the big surprise. Do not get too worked up - it is really only a big change for my family and not something others will find much excitement in knowing.
Are you ready?
(Drumroll...)
We are changing providers for Reiss's in-home ABA (applied behavior analysis) therapy program!
See, I warned you. Not terribly exciting, right? However, considering the intensity and numerous hours of ABA therapy Reiss puts in on a weekly basis, it is a big change for our family and one we are certainly looking forward to making.
The decision to change providers was not an easy one to make. Actually, the decision to change providers began not at all as a quest to find another provider but rather, as a mission to simply research other options in our area for in-home ABA and ABA centers should we decide to make a change in the future. After a series of events occurred and subsequent tension began to build between ourselves and our current provider, we felt it was best to really dig in and do our homework regarding looking into the other options we found available to us. There was the unfortunate tension building, but at that point, our efforts were still only meant to provide us with options in the event of a "what if" situation were to happen.
A funny thing happened along the way though, and once we began looking into several other options, including one center and three in-home providers, we became quite impressed with one particular provider who services our area. The more we talked with her, the more confident we felt that she was was a great option to go with now and not just to use later as a "just in case" option. It felt right and it felt like a change now was in our best interest after all. She was very open and honest with everything we asked of her. She made no qualms about meeting with me on two occasions. She did not skip a beat when asked to provide references of other families with whom she works. I, personally, checked each of her references not once or twice, but four separate times, calling them back whenever we thought of something else we would like to ask.
Tomorrow morning I will meet with our new provider and the two therapists she has hired to work with Reiss. I stress the number because our current provider has four therapists working with Reiss. At one time, we had six therapists working with him for a total of only thirty-five hours per week. At our best, we had three therapists. The unusually high number of therapists has always presented me with a level of frustration, as I knew from speaking with other parents whose children receive ABA through other providers that they typically had two therapists, and a maximum of three therapists for a full forty-hour week of therapy. If your own child receives ABA or has in the past, I would love your input as to the number of therapists you have/had and whether or not you feel more is better or less is best.
Next Monday, Reiss will meet his new therapists and begin therapy and a whole new fresh start. I am so excited for him and I am excited for my family, as it feels like we are about to embark on a totally new journey. I feel free and like a weight has been lifted from my shoulders.
It is almost as though the dreary and cloudy bitterness of winter has dissipated and the sun is shining and Spring has arrived. Well, until I remember that it will probably be around 30 degrees when I wake up tomorrow morning. But I'm on this high, so who cares if there is frost on the windows and the furnace continues to run non-stop for the next few weeks?
And now it's official. My high has caused me to babble meaninglessly about frosty windows and other nonsense. So I will leave with that.
To be continued...
Tuesday, March 1, 2011
A Reminder of the Prevalence of Autism
Today was the best, if not the strangest, afternoon I can remember having in quite awhile. It was a great day but with the number of other autism moms I saw today (amongst only a few moms total), it also served as a reminder of the prevalence of autism.
First, we started off by going to the dentist. Both kids behaved fairly well. That is, if you don't count the timeout Reiss got for banging on the side of the aquarium in the dentist's waiting room. It was not very hard but certainly hard enough to scare the bejeezus out of any fish unfortunate enough to call the tank their home.
In the waiting room, it was nice to recognize and talk with another autism mom whose children used to go to the same physical therapy office where my children went. Her boys' appointments coincided with my kids' appointments and we used to chat each week. Our insurance allotment of appointments ran out mid-year last year and I kinda lost touch with the mom, other than the occasional passing of one another on Facebook.
Our visit to the dentist's office reminded me once again of my spectacular memory, or rather, the lack of it. The dentist found a somewhat large cavity in one of Milla's teeth but it was nothing new to me. He told me about it on the last visit but I forgot to make an appointment to have it fixed. It was only after the dentist examined Milla on this appointment that I remembered that she had a small cavity. That small cavity is no longer small.
When Milla was finished with her exam and had picked out her Princess and the Frog toothbrush, her ABA therapist took her to her social skills group. Cavity-free Reiss and I then left and headed to the Y.
At the Y, I hadn't even taken my coat off when I saw there was another autism mom I know. This one I knew from her son and Reiss being in the same developmental preschool. We started talking, or maybe venting is a better word for it. We both feel lost about where to send our children for kindergarten next year. Another mom heard us talking and came over and joined in our conversation.
Thank goodness for eavesdroppers, especially when they are other autsim moms!
I felt especially fortunate for this other mom listening to our conversation because when she joined us, I learned that she is not only in my school district but, with a son who is ten years old, is also experienced in dealing with my school district's ways - two traits that I have found particularly difficult to find simultaneously occurring with other autism parents I meet. We hit it off immediately and an added bonus is that she has a daughter Milla's age. We exchanged phone numbers and I am excited at the prospect of having a new playmate for Milla.
As if all that excitement was not enough for one afternoon, another mom I have seen at the Y on occasion came over and spoke to us. She has two nephews with autism. We talked for awhile and she offered that her nephews recently went gluten-free and have shown amazing improvements.
While all this was going on Reiss played and played and played for nearly two hours straight with minimal intervention on my part. He played so wonderfully that I doubt anyone realized Reiss is just a little different than other children. Had it not been for seeing so many other autism moms, I may have even felt like any other parent just having an afternoon out at the Y. I think, just maybe, I may have even relaxed a little bit....
First, we started off by going to the dentist. Both kids behaved fairly well. That is, if you don't count the timeout Reiss got for banging on the side of the aquarium in the dentist's waiting room. It was not very hard but certainly hard enough to scare the bejeezus out of any fish unfortunate enough to call the tank their home.
In the waiting room, it was nice to recognize and talk with another autism mom whose children used to go to the same physical therapy office where my children went. Her boys' appointments coincided with my kids' appointments and we used to chat each week. Our insurance allotment of appointments ran out mid-year last year and I kinda lost touch with the mom, other than the occasional passing of one another on Facebook.
Our visit to the dentist's office reminded me once again of my spectacular memory, or rather, the lack of it. The dentist found a somewhat large cavity in one of Milla's teeth but it was nothing new to me. He told me about it on the last visit but I forgot to make an appointment to have it fixed. It was only after the dentist examined Milla on this appointment that I remembered that she had a small cavity. That small cavity is no longer small.
When Milla was finished with her exam and had picked out her Princess and the Frog toothbrush, her ABA therapist took her to her social skills group. Cavity-free Reiss and I then left and headed to the Y.
At the Y, I hadn't even taken my coat off when I saw there was another autism mom I know. This one I knew from her son and Reiss being in the same developmental preschool. We started talking, or maybe venting is a better word for it. We both feel lost about where to send our children for kindergarten next year. Another mom heard us talking and came over and joined in our conversation.
Thank goodness for eavesdroppers, especially when they are other autsim moms!
I felt especially fortunate for this other mom listening to our conversation because when she joined us, I learned that she is not only in my school district but, with a son who is ten years old, is also experienced in dealing with my school district's ways - two traits that I have found particularly difficult to find simultaneously occurring with other autism parents I meet. We hit it off immediately and an added bonus is that she has a daughter Milla's age. We exchanged phone numbers and I am excited at the prospect of having a new playmate for Milla.
As if all that excitement was not enough for one afternoon, another mom I have seen at the Y on occasion came over and spoke to us. She has two nephews with autism. We talked for awhile and she offered that her nephews recently went gluten-free and have shown amazing improvements.
While all this was going on Reiss played and played and played for nearly two hours straight with minimal intervention on my part. He played so wonderfully that I doubt anyone realized Reiss is just a little different than other children. Had it not been for seeing so many other autism moms, I may have even felt like any other parent just having an afternoon out at the Y. I think, just maybe, I may have even relaxed a little bit....
Friday, February 25, 2011
What a Fabulous Friday!
Dr. Robert Sears a.k.a Dr. Bob (left), yours truly (center), and James (right)Fridays do not get better than this! James and I spent an evening listening to Dr. Bob Sears speak on autism and treating its effects with a biomedical approach. As part of his book tour for The Autism Book, Dr. Bob spoke at the Indiana University School of Law. We were fortunate enough to get to go and listen to his expertise on everything autism.
Over the years, I have been in the presence of celebrities on a few occasions but none of them ever had the same effect on me as Dr. Bob did this evening. Regarding other celebrities, I always just figured "Well, they're people just like me." But with Dr. Bob, I was downright giddy and was not shy about having a photo taken of him with James and me.
It was such a fabulous evening! Definitely one I will never forget....
Tuesday, February 22, 2011
Miss the Bliss
Yesterday evening I went to my local TACA chapter's Coffee Talk meeting. Coffee Talk is, essentially, mommy therapy for autism moms, although an occasional dad shows up. It is a less formal, unstructured version of our regular TACA meetings; a time for talking about anything autism-related and everything else under the sun.
There were only four of us, including myself and three other moms. Somehow along the way we got on the topic of how autism affects every aspect of the lives of a family who has a member with autism.
I remember not long after my son was diagnosed, my father had become increasingly aggravated with me and told me it was because we (my family) had become so involved with autism that our entire lives revolved around it - as if we could just choose to separate ourselves from autism but instead made a conscious choice not to do so. Wouldn't it be great if it really was that simple?
Having only been into this journey for a short time when my father told me that, I did not know that my response should have been, "Yes, you are exactly right! Our lives do revolve around autism because autism has made itself a part of every single aspect of our lives."
No matter how much I would love to separate autism from our lives, it is there. It is always present and always finds a way to creep itself into every little detail of our lives.
Parents of typical children wake their children in the morning. In my house, my husband and I may be awakened at any hour of the night by our children who do not sleep well. Children with autism generally have an imbalance of seratonin and lack the ability to produce sufficient levels of melatonin - two hormones that, when out of balance, make for very poor sleep.
Parents of typical children give their children breakfast. My husband and I give our children a gluten-free, casein-free (GFCF) breakfast and more vitamin and mineral supplements than most professional athletes take. My children are full of metals and have gastrointestinal problems that cause them to have low levels of essential nutrients in their body or the ability to process foods properly in order to acquire those nutrients. The GFCF foods they eat help to heal their gastro issues and the supplements provide the nutrients they need where their bodies fail to obtain them through food.
Parents of typical children send their children off to school and bid them a nice day. My child goes to a private school with a full-time aide provided by our insurance because our public school system refused to give him an aide or allow our aide in school with him. They also refused to put necessary safety measures in place to ensure my child's safety without an aide.
Parents of typical children set up playdates for their children. My children attend a social group where they are integrated with neurotypical peers. Finding a playdate for a child with autism involves a monumental search equivalent to finding an ice cube in the desert. No, that's not right. Finding a playdate for a child with autism is not that difficult. The difficulty is in finding a lasting playmate for a child with autism.
Parents of typical children put their children in sports and activities like soccer and dance. My children take swimming lessons specifically for children with special needs so that they can receive one-on-one instruction.
Parents of typical children think nothing of sending cupcakes or cookies to school with their child for his or her birthday. When this happens, if I don't know in advance, my child is left out because he cannot eat the birthday goodies. How's that for "inclusion?" I did not choose to have my child on a special diet - his physical needs made that choice for us.
Parents of typical children think nothing of packing the kids in the car and taking off for a round of errands. For my husband and me, there is no such thing as a "round" of errands. If we can make it to two places with minimal problems and tantrums, we feel lucky.
Parents of typical children hire a babysitter for an evening and have a lovely evening out on the town for date night. My husband and I pay twice the amount for a babysitter as what typical parents pay and then we go out for a few hours with the hope that our son's next seizure will not occur on our caregiver's watch.
Parents of typical children take their children to the park or the library or a family outing and then relax or read a book or mingle with relatives while their children play. I have never been able to relax at a park for fear of my child bolting from the scene (children with autism are notorious escape artists) or injuring himself on the playground equipment because of his poor muscle tone caused by his autism and its internal workings or because he is having a tantrum for one reason or another. I have never read a book while my children play at the library, again, for fear that my child may bolt from the scene. I have mingled with relatives at family outings but only because my husband was overseeing the care of our children at the time.
This is what I mean by missing the bliss that other parents are fortunate enough to have. Actually, I do not miss it, as that would imply that I had it at one time. I have never had that peaceful bliss of just letting my children exist and play and live carefree lives. That bliss was ripped away from me just the same as a small piece of hope for my children to lead independent adult lives was ripped from them when they developed autism.
I have no point here, really. At this point, I am so over autism and while both of my children have made great strides towards blending better with their peers, autism still makes its presence very well-known on a daily basis. I grieve the loss of that carefree life I see so many parents around me living every single day.
There were only four of us, including myself and three other moms. Somehow along the way we got on the topic of how autism affects every aspect of the lives of a family who has a member with autism.
I remember not long after my son was diagnosed, my father had become increasingly aggravated with me and told me it was because we (my family) had become so involved with autism that our entire lives revolved around it - as if we could just choose to separate ourselves from autism but instead made a conscious choice not to do so. Wouldn't it be great if it really was that simple?
Having only been into this journey for a short time when my father told me that, I did not know that my response should have been, "Yes, you are exactly right! Our lives do revolve around autism because autism has made itself a part of every single aspect of our lives."
No matter how much I would love to separate autism from our lives, it is there. It is always present and always finds a way to creep itself into every little detail of our lives.
Parents of typical children wake their children in the morning. In my house, my husband and I may be awakened at any hour of the night by our children who do not sleep well. Children with autism generally have an imbalance of seratonin and lack the ability to produce sufficient levels of melatonin - two hormones that, when out of balance, make for very poor sleep.
Parents of typical children give their children breakfast. My husband and I give our children a gluten-free, casein-free (GFCF) breakfast and more vitamin and mineral supplements than most professional athletes take. My children are full of metals and have gastrointestinal problems that cause them to have low levels of essential nutrients in their body or the ability to process foods properly in order to acquire those nutrients. The GFCF foods they eat help to heal their gastro issues and the supplements provide the nutrients they need where their bodies fail to obtain them through food.
Parents of typical children send their children off to school and bid them a nice day. My child goes to a private school with a full-time aide provided by our insurance because our public school system refused to give him an aide or allow our aide in school with him. They also refused to put necessary safety measures in place to ensure my child's safety without an aide.
Parents of typical children set up playdates for their children. My children attend a social group where they are integrated with neurotypical peers. Finding a playdate for a child with autism involves a monumental search equivalent to finding an ice cube in the desert. No, that's not right. Finding a playdate for a child with autism is not that difficult. The difficulty is in finding a lasting playmate for a child with autism.
Parents of typical children put their children in sports and activities like soccer and dance. My children take swimming lessons specifically for children with special needs so that they can receive one-on-one instruction.
Parents of typical children think nothing of sending cupcakes or cookies to school with their child for his or her birthday. When this happens, if I don't know in advance, my child is left out because he cannot eat the birthday goodies. How's that for "inclusion?" I did not choose to have my child on a special diet - his physical needs made that choice for us.
Parents of typical children think nothing of packing the kids in the car and taking off for a round of errands. For my husband and me, there is no such thing as a "round" of errands. If we can make it to two places with minimal problems and tantrums, we feel lucky.
Parents of typical children hire a babysitter for an evening and have a lovely evening out on the town for date night. My husband and I pay twice the amount for a babysitter as what typical parents pay and then we go out for a few hours with the hope that our son's next seizure will not occur on our caregiver's watch.
Parents of typical children take their children to the park or the library or a family outing and then relax or read a book or mingle with relatives while their children play. I have never been able to relax at a park for fear of my child bolting from the scene (children with autism are notorious escape artists) or injuring himself on the playground equipment because of his poor muscle tone caused by his autism and its internal workings or because he is having a tantrum for one reason or another. I have never read a book while my children play at the library, again, for fear that my child may bolt from the scene. I have mingled with relatives at family outings but only because my husband was overseeing the care of our children at the time.
This is what I mean by missing the bliss that other parents are fortunate enough to have. Actually, I do not miss it, as that would imply that I had it at one time. I have never had that peaceful bliss of just letting my children exist and play and live carefree lives. That bliss was ripped away from me just the same as a small piece of hope for my children to lead independent adult lives was ripped from them when they developed autism.
I have no point here, really. At this point, I am so over autism and while both of my children have made great strides towards blending better with their peers, autism still makes its presence very well-known on a daily basis. I grieve the loss of that carefree life I see so many parents around me living every single day.
Wednesday, February 9, 2011
AUTISM EYE - New UK magazine for parents and carers of children with ASD
A brand new magazine written by and for parents of children who have autism is here!
Autism Eye (http://www.autismeye.com/) is published in the UK and is packed full of information and new research. The publishers have done a fabulous job of bringing valuable local information into one publication. Autism Eye is published quarterly and the very first issue is expected this month.
I like the look of this magazine and it's approach. It's about time that we had a magazine that was both balanced and informative regarding autism. I wish the publishers the very best of luck and look forward to my first copy.
Autism Eye (http://www.autismeye.com/) is published in the UK and is packed full of information and new research. The publishers have done a fabulous job of bringing valuable local information into one publication. Autism Eye is published quarterly and the very first issue is expected this month.
I like the look of this magazine and it's approach. It's about time that we had a magazine that was both balanced and informative regarding autism. I wish the publishers the very best of luck and look forward to my first copy.
Sunday, February 6, 2011
Callous Disregard for our children - Children in PAIN not autism !
When your child rocks, screams, shouts, writhes in pain do you see it as pain or do you just see what you believe is autism? So many physical problems go unnoticed, misrepresented or ignored in children who have autism, particularly those who have suffered regressive autism due to toxic vaccines like this little girl in the short video : http://articles.mercola.com/sites/articles/archive/2011/02/07/new-research-shows-link-between-mmr-vaccine-and-autism.aspx
Even though this child does not have language she is saying loud and clear what torment she is going through. Every doctor in the land should be made to watch this 3 minute video and be asked to diagnose this child (minus telling them she is autistic). Any doctor worth his salt would have to admit this child is suffering.
How many of you have children who present like this? How many of your children have gastro intestinal problems like this little girl - problems that are continually ignored by doctors? This kind of pain is suffered by so many children on the autistic spectrum - imagine trying to learn in school when you are in so much pain. Notice the little girl's hands with her wrists bent backwards. Clear signs of severe pain. Look at her face, twisted in pain.
If an animal acted like the girl in this video you would take it to a vet. Yet, so many parents believe doctors when they say that their child is autistic and there is nothing they can do - it's just autism.
Please watch - this little girl may be just like your child. Please watch and never believe what doctors may tell you that autism can't be treated.
http://www.youtube.com/watch?v=PzYREX0jrY4
or here: http://articles.mercola.com/sites/articles/archive/2011/02/07/new-research-shows-link-between-mmr-vaccine-and-autism.aspx
(http://www.cryshame.org/)
Even though this child does not have language she is saying loud and clear what torment she is going through. Every doctor in the land should be made to watch this 3 minute video and be asked to diagnose this child (minus telling them she is autistic). Any doctor worth his salt would have to admit this child is suffering.
How many of you have children who present like this? How many of your children have gastro intestinal problems like this little girl - problems that are continually ignored by doctors? This kind of pain is suffered by so many children on the autistic spectrum - imagine trying to learn in school when you are in so much pain. Notice the little girl's hands with her wrists bent backwards. Clear signs of severe pain. Look at her face, twisted in pain.
If an animal acted like the girl in this video you would take it to a vet. Yet, so many parents believe doctors when they say that their child is autistic and there is nothing they can do - it's just autism.
Please watch - this little girl may be just like your child. Please watch and never believe what doctors may tell you that autism can't be treated.
http://www.youtube.com/watch?v=PzYREX0jrY4
or here: http://articles.mercola.com/sites/articles/archive/2011/02/07/new-research-shows-link-between-mmr-vaccine-and-autism.aspx
(http://www.cryshame.org/)
Tuesday, January 18, 2011
B.R.A.T: It Is Not What You Think
Several weeks ago, I was giddy with excitement after having just received a goody box full of B.R.A.T. Organic Feel Better Drinks for my kids to take for a test drive. When I spoke with the owner of the company, who also happens to be a Facebook friend of mine, we agreed upon a review on my part in exchange for a free sample on her part. I had no idea her version of a "sample" would include all four flavors of the B.R.A.T. product.
Seriously, during my blogging days, I have agreed to plug for quite a number of companies whose interpretation of the words "sample our products" ended up being a single-sized serving or less of only one variety of their product amongst a line filled with many varieties. I am not one to complain when something is given to me for free, but when I agree to a review, I am not really getting the product for free, now am I? So when I agree to take the time to try a company's product and write about it, I expect a bit more than what the lady at the grocery store hands out on Sunday afternoons. How many companies are generous enough to send their entire product line?
If you are not familiar with the B.R.A.T. drinks or the more commonly known "BRAT diet" prescribed by doctors far and wide for upset stomach, then you may be wondering why anyone would give their child a product called B.R.A.T. or subscribe to the philosophy of a diet that seemingly might turn a little tyke into an obnoxious, out-of-control, spoiled...brat. Furthermore, if you are not familiar with the BRAT diet, it is likely you have never been sick since this go-to remedy is the catch-all advice from doctor to patient. For the rest of us, we know when our doctors prescribe such a diet that he or she is recommending bananas, rice, applesauce, and toast.
But let's say you or your little one is not feeling 100% and eating is out of the question for whatever reason. I had not planned on being graphic, but let's just say all the plumbing is getting a fierce workout, where do you turn for nutritional replenishment? The human body still needs incoming nutrients and electrolytes and unless your definition of good nutrition includes consuming artificial flavors, dyes, sweeteners, and preservatives, it is best to skip the Pedialyte.
Enter B.R.A.T. drinks - the Bananas, Rice, and Applesauce Tummy Soother
Nope, no toast in these drinks!
B.R.A.T. drinks:
- Come in four flavors: Original (kinda fruity), Vanilla, Cinnamon Toast, and Chocolate Honey.
- Are USDA Organic! Who doesn't love that??
- Have vitamins and calcium.
- Are free of the eight most common allergens, which is especially important to many people in the autism community and those people, in general, who have severe allergies.
- Taste great! And after all, a product can have all the nutrients in the world but if a parent cannot get it into their child's body, it is worthless - Right??
B.R.A.T. drinks can be found at several supermarket chains nationwide. If you cannot find this product locally, I recommend speaking to the manager of your favorite health food store or wherever you shop frequently. If they are not willing to stock B.R.A.T. for you (find somewhere else to shop!), B.R.A.T. drinks can also be purchased on Amazon.
To your health! And that of your
Sunday, November 21, 2010
Who Has Time for Boredom?
Really, I cannot even begin to comprehend how anyone can ever be bored. Yet, almost daily, this friend or that one on Facebook will post a status update either straightforwardly declaring such boredom or implying such with the indecisiveness of which activity to take on at any particular moment. I guess that is only one difference between myself and some of my Facebook friends: Some people use Facebook as a form of escape from boredom. I use it as a form of escape from my endless to-do list.
Right now, I am using my blog to escape my to-do list. And since I have little to write about, I will bore others with the details of my to-do list.
On my to-do list for this week, I need to.....
Tie up any loose ends for people on my family's Christmas gift list. It used to be for a long time that I was really great about having all our gifts purchased before Thanksgiving. That was B.C. (Before Children) This year has been a year of change though, and I am vowing to have that shopping done before Thanksgiving again. Unless absolutely necessary, I detest setting foot in stores between Thanksgiving and Christmas.
Get all our goodies together for Thanksgiving, Rounds 2 & 3. Round 1 came yesterday evening when we had James' mother over for dinner. It was supposed to be Thanksgiving but we had roast. I thought I was receiving a fresh organic turkey from our produce delivery service this past Friday. I was going to receive it on Friday, prep it that evening, and then roast it all day on Saturday. Much to my surprise, our turkey arrived Friday afternoon rock solid. It is now resting in the garage refrigerator and - by my estimations and according to Google - will be just about ready for roasting on......Wednesday. Round 2 of Thanksgiving will be Wednesday and Round 3 will be on, you guessed it, Thanksgiving.
Clean out my SUV. Who am I kidding? This has been on my to-do list for months. I did go get the oil changed on Wednesday. That's progress, right? Even if I did only do so for the few moments of peace and the Starbucks self-serve machine at the dealership...
Tackle the paper monster that grows and shrinks and grows and shrinks on my desk. On a positive note, it does indeed have a home on the desk now, rather than the kitchen counter where, until recently, it resided for several months.
Call the phone company to disconnect all the added features on our home phone. Now that I have finally ditched my dinophone and entered the new millenium with my iPhone, who needs all the extras on a home phone? I know we don't. Anyone who really needs to get in touch with us has my cell phone number.
Clean out some of these toys around here. Some will go to the second-hand store. Others will go straight to Goodwill. I would really love to just give them to someone whose children could use them instead of take them to Goodwill where they will invariably be marked with prices that are way too high. Alas, I know no one who wants to take a bunch of this-n-that toys off our hands and finding a family with a true need would only add to my to-do list. Does that make me horrible for admitting I plan on taking the easy way out by making a drop at Goodwill?
Look into a research program I read about that provides children with autism an opportunity for socialization. Reiss is part of a social group already but this program is one that would provide him with socialization amongst children he has never met.
Enough of my to-do list. Just thinking about it and writing it all down wears me out.
If you are still reading, surely you are bored. Go on, now - head on over to Facebook and let all your friends know how bored you are.
Right now, I am using my blog to escape my to-do list. And since I have little to write about, I will bore others with the details of my to-do list.
On my to-do list for this week, I need to.....
Tie up any loose ends for people on my family's Christmas gift list. It used to be for a long time that I was really great about having all our gifts purchased before Thanksgiving. That was B.C. (Before Children) This year has been a year of change though, and I am vowing to have that shopping done before Thanksgiving again. Unless absolutely necessary, I detest setting foot in stores between Thanksgiving and Christmas.
Get all our goodies together for Thanksgiving, Rounds 2 & 3. Round 1 came yesterday evening when we had James' mother over for dinner. It was supposed to be Thanksgiving but we had roast. I thought I was receiving a fresh organic turkey from our produce delivery service this past Friday. I was going to receive it on Friday, prep it that evening, and then roast it all day on Saturday. Much to my surprise, our turkey arrived Friday afternoon rock solid. It is now resting in the garage refrigerator and - by my estimations and according to Google - will be just about ready for roasting on......Wednesday. Round 2 of Thanksgiving will be Wednesday and Round 3 will be on, you guessed it, Thanksgiving.
Clean out my SUV. Who am I kidding? This has been on my to-do list for months. I did go get the oil changed on Wednesday. That's progress, right? Even if I did only do so for the few moments of peace and the Starbucks self-serve machine at the dealership...
Tackle the paper monster that grows and shrinks and grows and shrinks on my desk. On a positive note, it does indeed have a home on the desk now, rather than the kitchen counter where, until recently, it resided for several months.
Call the phone company to disconnect all the added features on our home phone. Now that I have finally ditched my dinophone and entered the new millenium with my iPhone, who needs all the extras on a home phone? I know we don't. Anyone who really needs to get in touch with us has my cell phone number.
Clean out some of these toys around here. Some will go to the second-hand store. Others will go straight to Goodwill. I would really love to just give them to someone whose children could use them instead of take them to Goodwill where they will invariably be marked with prices that are way too high. Alas, I know no one who wants to take a bunch of this-n-that toys off our hands and finding a family with a true need would only add to my to-do list. Does that make me horrible for admitting I plan on taking the easy way out by making a drop at Goodwill?
Look into a research program I read about that provides children with autism an opportunity for socialization. Reiss is part of a social group already but this program is one that would provide him with socialization amongst children he has never met.
Enough of my to-do list. Just thinking about it and writing it all down wears me out.
If you are still reading, surely you are bored. Go on, now - head on over to Facebook and let all your friends know how bored you are.
Thursday, September 30, 2010
I'm Still Breathing. That's Positive Thinking, Right?
This day started out fairly awesome this morning but then turned to c-r-a-p by early afternoon. Our morning therapist, Jessica, and I took Reiss and Milla to a playground at a church that welcomes the public. It was a great time but while there I received a call letting me know our afternoon ABA therapist called off. No problem, that just meant we had more freedom to do whatever and go wherever the day took us. Or so I thought.
Being the health nuts that we are now and that we have been in recent years, and I say that with sarcasm because sometimes it would just be so much easier not being so knowledgeable of the different ingredients that go into consumable products on the market today, we do not keep over-the-counter cold remedies or pain relievers on-hand regularly. That's fine if we never get sick or if we never have aches or pains - and we rarely do except for the five week nightmare we experienced recently - or if natural supplements would work 100% effectively when they are taken. However, such as the case may be, despite downing capsule after capsule after pill after pill of Vitamins C, D, and Zinc and who knows what else for the last several days, James has a terrible cold and he asked if I could get him some Dayquil or something similar while I was out and about today. A trip to CVS seemed simple enough.
Before I go any further, let me explain that I really do try to remain positive with regards to outings with Reiss and Milla when I do not have James or a therapist along to help me, but deep down the mere thought of going places with the two of them and the possibilities and the what if's scare the bejeezus out of me. Reiss is a runner. Milla can be a runner. If you do not know what I mean by this, clearly you do not have a child with autism. Many typical children run too. Children with autism run and reeling them in can prove to be quite challenging. I don't really know how to explain why or how it's different when it's a child with autism running away from a parent as opposed to a typical child but that's not what this story is about anyway.
So we went to CVS and as I always do whether or not I have James or a therapist with me or I am by myself with the kids, we talked about The Rules before getting out of the car. I am not some drill sergeant mommy whose children are expected to stay in formation while walking through the grocery. Nor am I a Nazi dictator-type mother who only allows her children to stay crowded together like sardines to keep the order. I do, however, expect my two charges to refrain from running from me and to keep their outdoor voices turned off while out in public. The only other rule is that they are to look with their eyes and not with their hands unless given permission. Today they were told that if any of The Rules were broken, we would leave the store.
One minute into our CVS trip, the wandering from me had already begun. I gave Reiss and Milla a warning. They continued to wander as I tried to find the best deal on some sort of chemical coughing cure with the least amount of yuck in it. I gave them another warning not to run from me and darn it if Reiss did not outsmart me again! He told me, and I quote, "Mommy, it's okay because we're not running away. We're walking."
Really???
I could not decide whether to laugh, cry, or...or...or what. The same statement out of almost any other kid would surely be perceived as sarcasm but since Reiss has no concept of sarcasm and he processes everything in the literal sense, I had no one to blame for his and Milla's wandering but myself. After all, they were not breaking the rules because they were not running away. So I clarified that they were not to run or walk away from the area I was in and they needed to stay one arm's length from me.
Next thing I knew, Reiss and Milla were walking very fast towards the front of the store. I just watched and waited as they walked all the way down the aisle from the pharmacy to the front counter and when they saw me staring with probably the most evil look ever, they came back. When they got to me, I very calmly put the items I was carrying back on the shelves and we proceeded to leave. Or more precisely, I carried Milla screaming and kicking out of the store while Reiss walked with his hand in mine and whining all the way to the car.
All that and we still did not have anything for James and his cold.
Because I really needed to get something for James to take and because I felt Reiss and Milla deserved another chance to prove they could behave in a store, we drove up the street to Walgreens. Once again, we discussed The Rules before getting out of the car. We were in and back out with some cold medicine, cough drops, and Disney princess silly bands in a matter of about fifteen minutes and - dare I venture to say it - without any meltdowns from my children or stares from other shoppers. It was definitely a much different scene from the one at CVS just minutes beforehand.
I would like to say Reiss and Milla were angels inside Walgreens but that would be embellishing their good behaviors. They were pretty well behaved though. Well, if you don't count when Milla grabbed a bottle of fingernail polish and was about to paint Reiss' nails while I had my back turned for maybe all of ten seconds. And yes, I admit that I got roped into buying silly bands that they probably didn't deserve after the behavior they had demonstrated in CVS.
All was well and we all lived happily ever after. That is, until our next errand - to the cable company - where I had to contain myself and refrain from firebombing the place because of their lack of service and where Reiss and Milla danced and played on the floor and stood in the chairs and played with the gumball machine and asked other customers their names and rolled around on the floor being "Colts guys" and at one point, Reiss even locked the door and I just let them do all of it because goodness knows if I had to make them follow The Rules in the cable company's office while trying to stay calm with people who have left a cable running across our yard for close to four months now, I may have gone into cardiac arrest or stopped breathing or some other unintentional bodily destruction and I would not be here now to tell all about it.
Or to take another breath after that unbelievably long run-on sentence.
Edit: 10/01/2010 - Thank you, to a friend of mine who read my blog and so discreetly emailed me to let me know I used the word "wonder" where I should have used the word "wander." How embarassing! Judging by how I spell nowadays, no one would ever guess I won my elementary school's spelling be in the fifth grade and then went on to the county bee only to end up misspelling the word "measles."
Being the health nuts that we are now and that we have been in recent years, and I say that with sarcasm because sometimes it would just be so much easier not being so knowledgeable of the different ingredients that go into consumable products on the market today, we do not keep over-the-counter cold remedies or pain relievers on-hand regularly. That's fine if we never get sick or if we never have aches or pains - and we rarely do except for the five week nightmare we experienced recently - or if natural supplements would work 100% effectively when they are taken. However, such as the case may be, despite downing capsule after capsule after pill after pill of Vitamins C, D, and Zinc and who knows what else for the last several days, James has a terrible cold and he asked if I could get him some Dayquil or something similar while I was out and about today. A trip to CVS seemed simple enough.
Before I go any further, let me explain that I really do try to remain positive with regards to outings with Reiss and Milla when I do not have James or a therapist along to help me, but deep down the mere thought of going places with the two of them and the possibilities and the what if's scare the bejeezus out of me. Reiss is a runner. Milla can be a runner. If you do not know what I mean by this, clearly you do not have a child with autism. Many typical children run too. Children with autism run and reeling them in can prove to be quite challenging. I don't really know how to explain why or how it's different when it's a child with autism running away from a parent as opposed to a typical child but that's not what this story is about anyway.
So we went to CVS and as I always do whether or not I have James or a therapist with me or I am by myself with the kids, we talked about The Rules before getting out of the car. I am not some drill sergeant mommy whose children are expected to stay in formation while walking through the grocery. Nor am I a Nazi dictator-type mother who only allows her children to stay crowded together like sardines to keep the order. I do, however, expect my two charges to refrain from running from me and to keep their outdoor voices turned off while out in public. The only other rule is that they are to look with their eyes and not with their hands unless given permission. Today they were told that if any of The Rules were broken, we would leave the store.
One minute into our CVS trip, the wandering from me had already begun. I gave Reiss and Milla a warning. They continued to wander as I tried to find the best deal on some sort of chemical coughing cure with the least amount of yuck in it. I gave them another warning not to run from me and darn it if Reiss did not outsmart me again! He told me, and I quote, "Mommy, it's okay because we're not running away. We're walking."
Really???
I could not decide whether to laugh, cry, or...or...or what. The same statement out of almost any other kid would surely be perceived as sarcasm but since Reiss has no concept of sarcasm and he processes everything in the literal sense, I had no one to blame for his and Milla's wandering but myself. After all, they were not breaking the rules because they were not running away. So I clarified that they were not to run or walk away from the area I was in and they needed to stay one arm's length from me.
Next thing I knew, Reiss and Milla were walking very fast towards the front of the store. I just watched and waited as they walked all the way down the aisle from the pharmacy to the front counter and when they saw me staring with probably the most evil look ever, they came back. When they got to me, I very calmly put the items I was carrying back on the shelves and we proceeded to leave. Or more precisely, I carried Milla screaming and kicking out of the store while Reiss walked with his hand in mine and whining all the way to the car.
All that and we still did not have anything for James and his cold.
Because I really needed to get something for James to take and because I felt Reiss and Milla deserved another chance to prove they could behave in a store, we drove up the street to Walgreens. Once again, we discussed The Rules before getting out of the car. We were in and back out with some cold medicine, cough drops, and Disney princess silly bands in a matter of about fifteen minutes and - dare I venture to say it - without any meltdowns from my children or stares from other shoppers. It was definitely a much different scene from the one at CVS just minutes beforehand.
I would like to say Reiss and Milla were angels inside Walgreens but that would be embellishing their good behaviors. They were pretty well behaved though. Well, if you don't count when Milla grabbed a bottle of fingernail polish and was about to paint Reiss' nails while I had my back turned for maybe all of ten seconds. And yes, I admit that I got roped into buying silly bands that they probably didn't deserve after the behavior they had demonstrated in CVS.
All was well and we all lived happily ever after. That is, until our next errand - to the cable company - where I had to contain myself and refrain from firebombing the place because of their lack of service and where Reiss and Milla danced and played on the floor and stood in the chairs and played with the gumball machine and asked other customers their names and rolled around on the floor being "Colts guys" and at one point, Reiss even locked the door and I just let them do all of it because goodness knows if I had to make them follow The Rules in the cable company's office while trying to stay calm with people who have left a cable running across our yard for close to four months now, I may have gone into cardiac arrest or stopped breathing or some other unintentional bodily destruction and I would not be here now to tell all about it.
Or to take another breath after that unbelievably long run-on sentence.
Edit: 10/01/2010 - Thank you, to a friend of mine who read my blog and so discreetly emailed me to let me know I used the word "wonder" where I should have used the word "wander." How embarassing! Judging by how I spell nowadays, no one would ever guess I won my elementary school's spelling be in the fifth grade and then went on to the county bee only to end up misspelling the word "measles."
Wednesday, September 15, 2010
Really??? Lighten Up, People!
Excuse me while I get a superiority complex for believing that if I can keep a sense of humor after all my family has been through and goes through on a daily basis, then just about anyone should be able to do so as well. Of course, keeping a sense of humor would require that a person have one in the first place.
I won't go into the long, boring details that fueled this latest little rant but suffice it to say that I think people who cannot distinguish humor online either need to stay off the computer or at least ask questions before they get all offended.
Here is the short list of things my family has dealt with over the last several months:
*First, and foremost, having to deal with autism on a daily basis, which is more than any human should be expected to do. And then on top of it, multiply it by two children. No, Milla is not diagnosed.....yet. That will surely follow towards the latter part of this month. (Yeah, we hit the jackpot on that one!)
My reaction? With all the therapies our children require, we are helping to keep people employed. Go autism! We are helping the economy!
*A bathroom remodel that lasted three months, ending with my firing of our contractor, and an incomplete project. Okay, maybe I didn't keep people employed on this one but we did keep him and his crew employed much longer than anyone should have to be employed for a simple bathroom remodel that should have taken two weeks, at most.
My reaction? At least they were out before Thanksgiving!
*Beginning of full-time ABA therapy, resulting in people being in our house five days per week for the majority of our waking hours.
My reaction? Finally, I have a motivating factor for keeping the house in order. It doesn't mean I do though. Hey, I only said I have a motivating factor, not that it actually motivates me.
*A flooded basement due to a busted water heater.
My reaction? Free water heater!!!! The old (relatively speaking, that is, because the old one was only three years old) one was still under warranty.
*Two seizures, one requiring an ambulance ride to the hospital.
My reaction? It was a good thing we didn't get things worked out with the school for Reiss to attend kindergarten. The day the most recent seizure happened would have been his first day of school. How's that for initiating a new teacher into the world of autism and its comorbidities?
*Numerous bouts of vomiting, diarrhea, and bloody noses.
My reaction? Between Reiss and Milla, they were happening fairly close together so I was able to wash the soiled clothes together.
*Endless doctors appointments, lab tests, supplements, medical bills, and newly occurring autism-related ailments appearing just as soon as we clear up a separate ailment.
My reaction? Our incredibly high insurance deductible gets met very early in the year. BONUS! One less thing to worry about during the year.
*Several instances of discrimination towards our child or our family because of our child's autism.
My reaction? We are spared the wonder of how much we need to tell people in regards to our child's autism. They let us know upfront that they are ignorant!
*And today: a flooded basement AGAIN. This time due to a leak where the water comes into the house.
My reaction? Yaaaayyy!!! We get to tear out those hideous bushes in front of the house! Better yet, someone is tearing out the bushes for us. Bonus again! Those backhoe operators tomorrow are not going to give a diddley about those bushes!
Again, that is the short list. It also does not include the stresses of events happening outside our family that directly affect our family.
My point? Is it really that difficult to keep a sense of humor? I figure if I can still laugh when most days I feel like crying and if I can keep a sense of humor while having no access to running water for two days, no shower, and getting the privilege of paying thousands of dollars for having BO, then surely other people should be able to take a joke.
Or, at the very least, laugh now and ask questions later.
I won't go into the long, boring details that fueled this latest little rant but suffice it to say that I think people who cannot distinguish humor online either need to stay off the computer or at least ask questions before they get all offended.
Here is the short list of things my family has dealt with over the last several months:
*First, and foremost, having to deal with autism on a daily basis, which is more than any human should be expected to do. And then on top of it, multiply it by two children. No, Milla is not diagnosed.....yet. That will surely follow towards the latter part of this month. (Yeah, we hit the jackpot on that one!)
My reaction? With all the therapies our children require, we are helping to keep people employed. Go autism! We are helping the economy!
*A bathroom remodel that lasted three months, ending with my firing of our contractor, and an incomplete project. Okay, maybe I didn't keep people employed on this one but we did keep him and his crew employed much longer than anyone should have to be employed for a simple bathroom remodel that should have taken two weeks, at most.
My reaction? At least they were out before Thanksgiving!
*Beginning of full-time ABA therapy, resulting in people being in our house five days per week for the majority of our waking hours.
My reaction? Finally, I have a motivating factor for keeping the house in order. It doesn't mean I do though. Hey, I only said I have a motivating factor, not that it actually motivates me.
*A flooded basement due to a busted water heater.
My reaction? Free water heater!!!! The old (relatively speaking, that is, because the old one was only three years old) one was still under warranty.
*Two seizures, one requiring an ambulance ride to the hospital.
My reaction? It was a good thing we didn't get things worked out with the school for Reiss to attend kindergarten. The day the most recent seizure happened would have been his first day of school. How's that for initiating a new teacher into the world of autism and its comorbidities?
*Numerous bouts of vomiting, diarrhea, and bloody noses.
My reaction? Between Reiss and Milla, they were happening fairly close together so I was able to wash the soiled clothes together.
*Endless doctors appointments, lab tests, supplements, medical bills, and newly occurring autism-related ailments appearing just as soon as we clear up a separate ailment.
My reaction? Our incredibly high insurance deductible gets met very early in the year. BONUS! One less thing to worry about during the year.
*Several instances of discrimination towards our child or our family because of our child's autism.
My reaction? We are spared the wonder of how much we need to tell people in regards to our child's autism. They let us know upfront that they are ignorant!
*And today: a flooded basement AGAIN. This time due to a leak where the water comes into the house.
My reaction? Yaaaayyy!!! We get to tear out those hideous bushes in front of the house! Better yet, someone is tearing out the bushes for us. Bonus again! Those backhoe operators tomorrow are not going to give a diddley about those bushes!
Again, that is the short list. It also does not include the stresses of events happening outside our family that directly affect our family.
My point? Is it really that difficult to keep a sense of humor? I figure if I can still laugh when most days I feel like crying and if I can keep a sense of humor while having no access to running water for two days, no shower, and getting the privilege of paying thousands of dollars for having BO, then surely other people should be able to take a joke.
Or, at the very least, laugh now and ask questions later.
Tuesday, August 24, 2010
Autism's Latest Victim: Our Carpet
Autism has claimed its latest victim: our carpet.
If you are a parent who has a child with autism, reading the following will not even phase you. If anything, you will probably finish up here and nod your head in that been-there-done-that kind of way. If, however, you are a parent of a child without autism, consider yourself forewarned that the following may cause you to ruin your own carpet with a bout of vomiting.
Typically, once a child has surpassed the potty-training phase, also gone are the days for most parents when poop is a regular topic of conversation amongst friends. This is not the case with autism parents. Because the poop of children with autism can tell us so much about their bodies' internal workings, it actually becomes a main subject for talking amongst friends - it is one area in which nearly all autism parents bond. Really, it is the parents of neurotypical children who are missing out on all the real fun. My sympathies...not all parents can have a special child.
On with it, already. The victim's story...
We do not have a lot of carpet in our home, however, the three upstairs bedrooms have fairly new, relatively new, and five-year-old carpet in them. All are berber and all now have their fair share of stains on them, with Reiss's room and my husband's and my bedroom having the most recent stains.
Why do I blame autism for ruining our carpet? The answer is very simple, really. If it were not for autism, Reiss would most likely not have yeast overgrowth in his gastrointestinal tract and without yeast overgrowth, he would not need to be on a medication that has given him sudden, explosive diarrhea at around 8:00 every evening for the last week that causes him to utter that phrase no mother ever wants to hear: "I didn't make it."
While I do not enjoy cleaning up dribbles, puddles, smears, and spatters of diarrhea, I do take comfort in knowing that all this misery of playing maid of the messes is not without its reward, namely, all the yeast die-off which, aside from metals chelation, ranks pretty high on the list of holy grail goals for parents of children with autism.
So bring it on, autism! You can ruin my carpet and you can ensure my SpotBot remains gainfully employed in this house, but you will not break my spirit - for a Warrior Mom never gives up!
Monday, August 9, 2010
An Early Morning Stumble
After a rather early awakening this morning by a certain two-year-old, I found myself tossing and turning, trying unsuccessfully to go back to sleep. So, as I almost always do when battling insomnia, I got up and went to the computer.
As the new school year approaches, just thinking of Reiss attending public school gives me heart palpitations. School starts in four days and we are not even certain whether or not he will be going on to kindergarten within our school system. Yes, with there only being a matter of four days that separate us from now until the beginning of school, we should know if our child is going to start school and yes, most people - including other parents of children with autism - do know whether or not their child is going to go to school. However, we are not "most" people and "most" people do not have to deal with case conferences, IEP's, therapists, and assorted other things that make up the story behind why we do not know if our child will be attending kindergarten within the public school system. But that story is one for another time, not now.
Back to my heart palpitations and the anxiety causing them...
In the past few weeks, merely the thought of sending Reiss to public school darn near gives me a full-on anxiety attack. My mind races with news stories of children with autism being abused by teachers, disappearing from school, and of one autistic boy who even drowned in a school's pool. I think about how no one knows a child with autism like his own parents. I think about how I have tried to explain to one of my own relatives that my child does not comprehend danger and is often a "runner." I also recall the response received and it was not one that provided me reassurance of a total understanding of the problem. If I cannot get someone who is related to my child to "get" it, how on earth am I going to stress the importance of safety to a teacher - someone who is merely being paid to educate my child, not make sure for instance, that he comes back from the bathroom or eats only the food sent to school with him or does not have a meltdown because his pants got water on them or...or...or...?
It is all the "ors" that have brought homeschooling back to the forefront of my thoughts, so with not being able to sleep this morning, I began digging around (again) online for homeschool resources and specifically, for people who have children with autism who they homeschool. In doing so, I stumbled across Free Printable Fun, a fun little blog written by Jamie Sue, a crafty mom to a five-year-old boy with autism.
Jamie Sue does not post very often and from what I have read so far, I do not get the impression that she homeschools (but I could be wrong!) or that she uses the projects she posts as homeschool materials. Again, finding her site was simply a stumble for me that appeared when I Googled "homeschool autism resources." However, the content of her posts are valuable and the projects seem fun, even if they are not meant to be part of a structured homeschool curriculum - although some of them could be used in conjunction with other materials for that very purpose.
As the new school year approaches, just thinking of Reiss attending public school gives me heart palpitations. School starts in four days and we are not even certain whether or not he will be going on to kindergarten within our school system. Yes, with there only being a matter of four days that separate us from now until the beginning of school, we should know if our child is going to start school and yes, most people - including other parents of children with autism - do know whether or not their child is going to go to school. However, we are not "most" people and "most" people do not have to deal with case conferences, IEP's, therapists, and assorted other things that make up the story behind why we do not know if our child will be attending kindergarten within the public school system. But that story is one for another time, not now.
Back to my heart palpitations and the anxiety causing them...
In the past few weeks, merely the thought of sending Reiss to public school darn near gives me a full-on anxiety attack. My mind races with news stories of children with autism being abused by teachers, disappearing from school, and of one autistic boy who even drowned in a school's pool. I think about how no one knows a child with autism like his own parents. I think about how I have tried to explain to one of my own relatives that my child does not comprehend danger and is often a "runner." I also recall the response received and it was not one that provided me reassurance of a total understanding of the problem. If I cannot get someone who is related to my child to "get" it, how on earth am I going to stress the importance of safety to a teacher - someone who is merely being paid to educate my child, not make sure for instance, that he comes back from the bathroom or eats only the food sent to school with him or does not have a meltdown because his pants got water on them or...or...or...?
It is all the "ors" that have brought homeschooling back to the forefront of my thoughts, so with not being able to sleep this morning, I began digging around (again) online for homeschool resources and specifically, for people who have children with autism who they homeschool. In doing so, I stumbled across Free Printable Fun, a fun little blog written by Jamie Sue, a crafty mom to a five-year-old boy with autism.
Jamie Sue does not post very often and from what I have read so far, I do not get the impression that she homeschools (but I could be wrong!) or that she uses the projects she posts as homeschool materials. Again, finding her site was simply a stumble for me that appeared when I Googled "homeschool autism resources." However, the content of her posts are valuable and the projects seem fun, even if they are not meant to be part of a structured homeschool curriculum - although some of them could be used in conjunction with other materials for that very purpose.
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