Saturday, May 30, 2009
Reiss at the bubble station on Field Day. Those bubbles were everywhere!
Milla trying to take a nip from her baby's bottle.
Milla feeding her baby in her sling. I ought to find some way to strap that thing on her and make it unremovable for a few hours. Maybe she will get the hint that it's not fun having a baby attached to oneself ALL day long. Probably not....really though, I do love all her hugs. She's very clingy and although it's not always at the most convenient times, I am always a willing recipient for her hugs and kisses. Sometimes I will just sit and smell her hair when she is cuddled up on my lap.
Thursday, May 21, 2009
A number of individuals (you know who you are) have contacted me anonymously with some very interesting facts and figures regarding autism/advocacy/politics/issues in Northern Ireland. If you are reading this I would be grateful if you would consider contacting me again. The fact that you felt your voice could only be heard anonymously, that you had to protect your identity (and ultimately your children's identity), says a lot about the state of affairs in Northern Ireland.
I detect a level of fear and intimidation felt by some parents to speak out against the status quo. One of you even intimated the fear of litigation being lodged against you if you expressed your real opinions. This is appalling. I doubt very much that you are the only people in the North who feel this way.
I would put to you that instead of fearing litigation that you consider instead the possibility of lodging a class action versus the government/voluntary sectors for dereliction of duty towards your children. Parents have a right to their opinion, and to voice that opinion. Parents are experts regarding their children's autism and are their only real advocates. Every parent has a right to have their voice heard, and a right not to have their voice superseded by anyone else. I urge parents to speak their minds about what is happening to our children (or not happening). I also implore anyone who has received a threat of litigation or intimidation, either in writing or verbally, regarding speaking out about your child's treatment or your own, regarding autism, to not remain silent about it.
As an aside, this ( www.youtube.com/watch?v=vBgfDLnQyIk ) is a good example of what an autism rally should look like and an example of parents making their voices heard. We have 1.75million people in Northern Ireland. Apparently, there are 17,000 children and adults on the autistic spectrum. They and their families amount to a lot of people. Where are their voices?
The Middletown Centre for Autism idea is for now, on the shelf. The Southern Government recognised their folly (albeit 7 years too late), and cut their losses in this white elephant project. They have bigger projects to worry about like the Monaghan/Derry road that is going to cost 459 million euro.
In its 20 May 2009 coverage on the autism funding cut, RTE's website stated that "Today Mr O'Keeffe will confirm that the Government wants to pause on funding its share of the next phase. He will tell Ms Ruane the decision is due to the budgetary situation and for now he has no room to manoeuvre. A much more expensive plan is the proposed motorway project from the Monaghan border to Derry. The Government has promised £400m (€459m) for the work. So far there are no plans to pull back from that commitment."( see: http://news.ie.msn.com/article.aspx?cp-documentid=147424549 )
Roads generate money. Autism depletes money. It's a no-brainer really.
For those of you who are not familiar with the Middletown Centre for Autism, it was a joint North/South Initiative ostensibly created to promote 'excellence' in autism, via a centre, a complex, where children would come from all over the country to avail of specific services.
The idea was formally launched in 2002, and seven years, and 7 million pounds later, the fate of this centre looks pretty much sealed - and not going ahead. Catriona Ruane, Minister for Education responded with her infamous bullish take on things, and says she is going to push it through regardless, even though no one, including her, knows where the money is going to come from. With elections coming up, every head counts, and I fear Sinn Fein, so fond of their cross border initiatives, see a loss of votes over the funding cuts. I haven't heard anything clever regarding autism, being uttered by Catriona Ruane yet, and I hope her sputtering is short lived. The fact she wants to water down the definition of special needs and make it even more difficult for our children to obtain help gives me no confidence in her whatsoever. See: (http://www.theyworkforyou.com/ni/?id=2009-05-19.4.1) for a run-down on her plans for the special needs budget. Her 'insistence' regarding this centre serves her party, not my child.
If you have never heard of the Middletown Centre,
(or the 1. Middletown Centre for Autism Excellence, or the 2. Middletown Centre of Autism Excellence, or the 3. Middletown Centre for Autism Promoting Excellence or the 4. Middletown Centre of Autism Excellence),
you would be in good company. Despite its many names, the secrecy surrounding the centre has been akin to the G7 talks. For the past seven years, parents have been asking questions, but to no avail. Parents were not informed, not consulted and not invited to participate in the development of this centre. It was a purely us (professionals) vs them (parents/children) approach. This article ( www.sinnfein.ie/news/detail/23456 ) sums up questions that continued to be asked by parents throughout the past seven years and which still are not answered.
The seven million pounds spent on this centre so far seems, in light of the other recent news stories, to have fallen into the backdrop. Sexual, physical and emotional abuse of children by the Catholic Church, together with the Parliamentary Speaker and expenses rows consumed the autism story. It was a one day wonder and I have not seen mention of it again. Considering the institutional abuse in this country of vulnerable children in the care of so-called pastoral caretakers, Catholic 'teachers', I wouldn't send my dog to Middletown. My child will never be out of my sight.
Further, the belief systems of those who hatched up this idea are reprehensible. Our children, those who have been failed by the educational/social systems and who may have naturally developed distrust and fear, culminating in the dreaded 'behavioural' problem, would be tagged and unceremoniously whisked away to an autism de-programming centre. The mind boggles - I imagine retired teachers, 2nd year psychology students and general do-gooders with no children of their own but with letters behind their names, projecting all of their negative beliefs on our children (you are bad, which is why you are here; you don't fit in, which is why you are here; we are right, you are wrong, which is why you are here; we need to justify our hefty salaries and seven million wasted pounds which is why you are here!) What must the rest of the world think of us? Present this scenario to parents in the USA and they would recoil with horror.
Ruane tried to make links between this proposed centre and the TEACCH centre in North Carolina, in her Stormont speech on special needs (www.theyworkforyou.com/ni/?id=2009-05-19.4.1 ) This was an interesting comparison, considering the TEACCH program comes with a set of particularly odd and negative belief systems as well. Considering TEACCH is the only intervention strategy used in the North, these comments were illuminating. There has always been a connection between the TEACCH centre and the autism boffins in Northern Ireland. It would take a book to delve into this properly but soon I will endeavour to uncover the minutiae of that very odd relationship. Needless to say it's to do with money and not wanting to spend it.
The remarks of AutismNI/AutismUlster CEO Arlene Cassidy were interesting, following the breaking of this story. Maggie Taggart's piece on BBC1 found Ms Cassidy to be quite sanguine about the whole matter and altogether non-plussed. (see for yourself here: (http://news.bbc.co.uk/2/hi/uk_news/northern_ireland/8056444.stm) In this clip Ms Cassidy says, "maybe this provides us all with an opportunity...I am a great believer in looking for the silver lining and maybe some of the funding diverted to Middletown can be used otherwise."
I do wonder if, by using the word "otherwise", AutismNI/AutismUlster hopes money ring fenced for the autism centre, might now come to the charity? As far as I know, AutismNI/AutismUlster was not invited to roll-out training at the Middletown Centre. Perhaps they see this funding setback as opportunity for the organisation, a chance to usurp the Department of Education/Health's role in autism leadership? There is talk of possibly developing the post of an Autism Commissioner. Would the incumbent to this post be culled from the voluntary or statutory sector? There is a lot at stake right now in terms of autism in Northern Ireland and whoever fills this post will inherit substantial influence. Is autism now more than just about 'the money' or is it about the 'power'? Is it about making sure parents never get ahead of themselves and ensuring that spending is corralled? The public (at least those who paid attention to the news for the brief 20 seconds of coverage on this story) might be feeling resentful that seven million was wasted on children with autism. How will future spending on our children be greeted? Will the public blame our children for this spend in the same manner that those who developed this centre blame our children for their 'failure' to comply?
I did expect AutismNI/Autism Ulster to be more vocifereous in its remarks regarding the funding cut to the Middletown Centre. Monies to fund the centre came from the Northern Ireland special needs budget, your child and mine are going to suffer because of this. The 'oh well' attitude was surprising considering I know parents who were indeed jumping up and down with anger and frustration over the lack of transparency in this matter - you did not hear their voices. Well actually, if you were listening to Radio Ulster at about 7.15am on Tuesday 19 May 2009, you would have heard a sound clip from one parent who said she did not want, and never did want this centre. Unfortunately, this coverage was cut from the program, and no mention was made of it again.
AutismNI/AutismUlster were very much in support of the endeavour from 2002 onwards.
On Friday 28 September 2007, AutismNI/Autism Ulster made the following comments: ... ‘It is a milestone in the campaign for government recognition of the specialist needs of children challenged with the social, communication and behavioural difficulties associated with Autism. The development of the Centre of Excellence provides a tremendous opportunity to make a wide range of interventions known to be effective in ameliorating the long-term effects of Autism, more accessible to the wider community. PAPA, the Autism Charity for the North of Ireland and Donegal, believes that the Centre of Excellence will act as a catalyst for the enhancement of awareness, expertise and research activity regarding Autism throughout the island of Ireland. We look forward to playing our part and working with the Education departments, North and South, to ensure that the Centre of Excellence for Autism is second to none’". ( www.niassembly.gov.uk/qanda/2007mandate/writtenans/070928.htm )
Where did all that previous enthusiasm go?
The NAS (National Autistic Society) were also sedate in their remarks, stating only that children were 'slipping' through the net'. Considering only 70 of Northern Ireland's children were ever going to get through this centre per year, and even if it was the best centre on earth, plenty of children would still 'slip' through that 'net'.
I now know of 80 or more children just in my own personal family/social circle who have an autistic spectrum condition, many of whom need help with very acute difficulties. Multiply that with the rest of you out there, and the statistics will show most of Northern Ireland's children would never get a look-in into this centre. Equity issues, child protection issues, even the very name of the centre were never resolved. Apart from the money wasted, I personally am sighing with huge relief.
It was madness from start to finish. That's why it was kept so secret, they knew it was madness. Seems anything goes where autism is concerned. A vacuum exists in Northern Ireland regarding autism and nature so loves a vacuum.
So to make up for the empty space of no services, no equality, no understanding, 'they' thought they would overcome all of that with a hatchet job of a 'centre of excellence'. I believe there are now, more than a few beaurocrats hoping this elephant will be allowed to retire. Very little thought was put into the idea, and whoever did think it up, had aspirations well beyond their means. We are a poor cousin in terms of autism compared to anywhere else in the 'developed' world, someone clearly got ahead of themselves here, someone who wanted to run when they are only learning to walk.
I ask you though, what would have been worse - an expenditure of 7 million pounds, or the trauma of hundreds of vulnerable children forced to leave their homes for up to five weeks to enter an autism 'rehab' centre, miles from home, without their parents and family support. Just imagine these unfortunate children subjected to run a gauntlet of behaviourists and mentalists all with the same belief system about autism (this kid isn't fitting in = 'bad').
What we really need is a centre for those who work with autism and our children to allow them to undergo de-programming of their negative belief systems and to provide them with an opportunity to confront the damage they have waged on our children as a result of their own ignorance and arrogance. For the teachers who view your child's stimming behaviours as something 'weird', 'bad', or unacceptable, they would need two weeks in group therapy to help them overcome their beliefs about conformity. They could then promote their new understanding to all the students they work with. This would foster acceptance and help to shuffle off stigma. For the educational psychologists who continue to speak in jargon and view parents as a hindrance rather than the central link to the child, they would require three intense weeks of having their own IQ assessed, as well as their social skills scrutinised, particularly their skills that involve working with parents.
All the children (guinea pigs) that would have been fed through this centre, had a very lucky escape.
The powers that be in Northern Ireland, both on a statutory and voluntary level, created the problems our children now face. They then offered a quick fix solution to their own lack of action by coming up with the idea of a centre of excellence. They hoped that vulnerable and desperate parents would bide their time for seven years, and understand that the wait for 'excellence' was worth it.
Will lessons be learned from the mistakes made? How much provision and forward planning was put on hold while the Province waited for this miraculous centre to materialise?
I leave it to you to ask more questions.
"You cannot solve problems with the same level of consciousness that created them." Albert Einstein
Wednesday, May 20, 2009
The article itself is likely an eye-opener for anyone who is unaffected by autism in some way and/or is unfamiliar with the red tape families who are affected by autism must wade through when it comes to insurance companies and their policy coverage for autism-related treatments and therapies.
That said, what struck me most about the article was not the ridiculous stance insurance companies take regarding coverage (or lack thereof) for autism-related charges, as this comes as no shock to me having incurred way more out-of-pocket medical expenses than any family should ever have to face. No, the slap in the face I felt was a result of two statements contained within the article that were made by Catherine Rice, Director of the CDC's National Center for Birth Defects:
"Studies have linked autism to air pollutants, pesticides, pet medications and even drugs used in the birthing process, such as Pitosin."
“It could be anything from the exposures in our physical surroundings — chemicals around us in homes, clothes, products, medications we take and food we eat”
Rice is quoted in the article admitting to studies having linked autism to birthing drugs and then goes on further to say that it (the cause) could be linked to anything - including medications we take.
Besides myself, does anyone see the complete irony here? Autism can be caused by birthing drugs or even something as simple as medications we take....yet, it is such a stretch for the CDC to admit that vaccines could play a role in the onset of autism as well.
GRRRRRR!!!! This angers me so intensely...Seriously. I could have gone without reading that article today. Nonetheless, thank you, Ginger for all your digging in order to help keep our community of autism-affected families well-informed.
Sunday, May 17, 2009
- I am pregnant and this is the "implantation" period.
- I am pregnant (and didn't know it!) and am currently having a miscarriage.
- I am having an anaphylactic reaction to something I ate.
- I am going to do the world's largest #2 soon.
Sorry to be so graphic but just wanted to let anyone reading know why I am not at 100% right now and do not have any photos or exciting news to share. Between last night and up to now, I have spent more time in bed and on the couch than I have been privileged to in the last four years. Unfortunately, I wish it were under different circumstances.
On that note, I will redirect anyone interested on to the site of another blogger I like to follow. New's flash, she has had her baby since last posting to her blog.
Saturday, May 16, 2009
Wow...two pics in a row with both of them actually LOOKING at the camera.
Friday, May 15, 2009
This morning's playgroup was a very welcomed hour of near-relaxation. Most Fridays, my Mommy Mojo totally escapes me once we arrive at playgroup and I spend the majority of our time there doing what some may consider hovering - but what I consider supervising - Reiss. This morning was different though, and with the exception of a "No, Reiss" here and a "Stay out of the toy closet" there, I was treated to an hour of almost total inactivity and adult conversation spent in a child-size chair - just like all the other moms. I dream about this kind of relaxing but it's a rare indulgence in which I am able to partake. Helicopter parenting is not my style but I do take on somewhat a level of an authoritarian on Friday mornings simply as a way to keep the best interests of the other children in mind at playgroup.
When I mention the best interests of other children, I mean making certain Reiss does not force his presence onto others. For example, Reiss is doing very well with the concept of sharing lately but his presentation could use a little improvement. Getting him to understand turn-taking and sharing has been a bit of a challenge but it's that same understanding that he has acquired in recent weeks that has given me faith of our arrival very soon in a place where he understands gentility also plays a role in give and take.
Translation: Learning the concept of sharing is an extremely noteworthy accomplishment, however, the technique Reiss uses needs improvement so as to avoid toys being shoved into the faces of other children.
Reiss loves to present toys to other children but he tends to be a tad aggressive in his persistence to get the other child to accept the toy. Occasionally, when he's trying to share with another child, if the other child does not want the toy or whatever he is offering, he will insist by wrapping the child's hand around the toy. So we have our work cut out for us in that aspect.
On the autism research front, I received a call today from a highly respected local figure in the field of special needs education. Her name was given to me by two separate individuals who spoke very highly of her and her skills in helping families with children on the autism spectrum. She asked me a few questions about Reiss and which areas we need educational resources and is sending out a packet of materials appropriate for our needs.
During our conversation, I told her one area we seem to have a problem with is a lack of our extended families "getting it" and understanding that doing things the same way one would do them with a typical child doesn't always necessarily work with Reiss or children with ASD, in general. She said she sees this in almost every family she helps. That saddens me because it tells me that many other families are not getting the well-deserved and much-needed support from their extended families. On the bright side, she sounds very dedicated to going to any necessary extremes to help families deal with extended families, including coming to the child's birthday party and speaking with family members...Now that would be some gift!
Thursday, May 14, 2009
This week I am thankful for:
1) My Dad having prostate cancer. Yes, I understand cancer is not something to be thankful for but, again, stay with me here and I will explain. Yesterday, I found out my father has prostate cancer and from the research I've seen and the few men I've known to have had cancer, prostate cancer seems to be the kind to get if you're going to get a cancer and retain a positive outlook for the future. I don't know of any prostate cancer patients who have ever died from it. That's not to say there aren't any out there - just saying the ones I've known to have had it are all still with us on Earth and living healthy lives. My next door neighbor is one of them.
2) Milla showing an interest in watching television. While this might seem like a parent's nightmare - having a child become so addicted to tv they need to be pulled away kicking and screaming - we are not actually at the scary stage as yet. I am thankful for Milla being happy to sit in front of the tv for maybe five or ten minutes at a time so I can pay a few bills, do some uninterrupted dinner prep, brush my teeth - whatever. Reiss is not interested in watching tv and has a difficult time self-entertaining so when he is at school, it's a comfort to know I can get a few things done, however minute those things may be, at least they are crossed off the To Do List for the day.
3) School will be out for Reiss in a few short days. Although Summer Break means the absence of speech therapy, which he receives while in school, and while I truly hope he does not lose any communications skills, I also have plans for his break for all sorts of fun activities. It will also give us a chance to work on improving his potty-training skills. And an added bonus: he will not have to get up so darn early. Have I ever mentioned he has to be at school at 7:50 AM? Absolutely ridiculous! For a high school student, not so much, but that is just way too early for a preschooler, in my opinion.
In other news...remember week before last when I was afraid to get on the scale on Friday? Well, it was for good reason. I not only did not lose any weight, I gained. I don't remember how much - a few ounces or a pound - no obscenely high amount. Then last Friday came and I got on the scale to discover a 3.2 pound weight loss - so that is another thing for which I am truly thankful. We'll see what tomorrow's weigh-in brings....
Wednesday, May 13, 2009
Tuesday, May 12, 2009
Before I go any further, I'll just preface this story by stating if you were to ask James how the zoo trip went, you will get a totally different story than mine. Keep in mind though, James is not the manic mommy I am and he also was not the one accosted by THE bee....more on that later.
Our day started out like most days when Reiss goes to preschool, except for today Reiss was not going to school. Because Milla and I were going on the zoo trip as well, Reiss was to ride with us instead of on the bus taking the children to the zoo.
As I was getting everything ready to go - lunches packed, extra clothes in case anyone had an "accident" (I'm pretty consistent so I didn't pack any clothes for myself.), check the diaper wipes container, make sure the kids' cups are full, James called and said he wasn't terribly busy at work and did I want him to go with us? Uh....how am I supposed to responed to this? I didn't want to jump on it with an overly-excited "YES!!!" but I also didn't want him to feel like he was neglecting anything at work. I opted for the old stand-by, "It's up to you, Dear." And it was decided James would go with us and we would pick him up from work on our way to the zoo. As if we weren't already running around like a bunch of crazies to get out of here - or maybe that was just me since Reiss and Milla were running around getting underfoot - I now needed to pack more lunch food in the bags, more drinks, more everything. But I'm not complaining because James was going and that meant I would have help!
It was about the time I got off the phone with James when Reiss started asking for the phone he's been playing with for a few days now. We must have twenty toy phones around here but he needed this specific phone that is a cheaply made little thing from Dollar Tree. Forget all the phones specifically designed for toddlers to have a "learning experience" with all their colorful buttons on them that make the phone talk, sing, dance, and whatever else when you press them! No, Reiss wanted the one that looks like a real cell phone and was made in China by someone who probably gets a cup of rice to eat every other day. Don't blame me - Grandma bought it!
We could not find the stupid cell phone and it was time to leave. I had a bad feeling from the get-go that I should just risk being late to the zoo and look around until we found that phone but the other voice inside me said I needed to get our rears out the door and on the road. Bad decision.
After fetching James from work and a remarkably uneventful drive to the zoo (it's downtown - enough said), with the exception of listening to Reiss go on and on about the cell phone, we arrived just as the children from Reiss's class were unloading from the bus. Except for James, our admissions were prepaid with the permission slip that was sent home on Tuesday of last week and needed to be back by Thursday. Seriously....Reiss only goes to school on Tuesday and Thursday, so you'd think they would not only give a little more advance scheduling with the form being sent home but more time in which to return it. Oh well, we're responsible parents and got it turned back in on time so I guess no foul, no harm or however that saying goes.
We were prepared to pay for James to get in but somehow it worked out that he was able to just walk in, as well as another parent who had not planned on coming prior to today and had not prepaid either. Maybe Miss Kathryn gave the zoo admissions people a really charming smile or something.
So we all got in the gate and it was like the gunshot at a horse race and all the horses bolt down the lanes. All the people in our group bolted off towards the dolphin pavilion for the show that was going to take place within the half hour. Meanwhile, James, Reiss, Milla, and I were trudging along at a crawl with Reiss crying and wiping his eyes because he didn't get his hand stamped like Mommy and Daddy did by the zoo admissions lady. James rubbed his stamp on Reiss's hand and some of the ink rubbed off on his little hand. That seemed to satisfy him for a bit but then as we were making our way towards the dolphin pavilion Reiss started in again about wanting the cell phone. We did not go to the dolphin show. I knew Reiss wouldn't sit still for that long and especially not when his only focus was on wanting that %$^&*# phone. Yes, we tried giving him my real cell phone. It didn't work. Even Daddy's cell phone with it's really cool little built-in camera was a no-go.
We walked, Reiss talked....about the phone. Then he was hungry and we brought out the animal cookies. Wasn't that appropriate - animal cookies at the zoo. Hopefully, I'm not the only one who thought that was kinda cute. Reiss talked about going home to get the phone. I threatened to leave the zoo and go home but somehow it didn't have the effect I was hoping for since Reiss wanted to go home. He got the lecture about not talking about the phone and not running away and behaving and if the stars were aligned just right, we would visit the gift shop as we left. Occasionally, we saw an animal here or there as we walked.
Now I don't want anyone to think I had an absolutely miserable time at the zoo but I will admit that I find it a bit pathetic that my biggest joy was not in seeing my children's reactions to the animals, but my own reaction to the little meerkats frolicking around in the "Deserts" exhibit. They were so cute and playful and friendly. One came up and sat right up against the glass wall separating them from us. Reiss did say something funny about the meerkats and I'm ashamed because I don't remember what it was. It's not that I am focusing on his tunnel-vision for wanting the phone, it's just a fact that the phone placed such a wrench in our enjoyment today.
In past trips to the zoo, Reiss has shown little interest in the animals at the zoo but I can't help but wonder if things would have been different today had we just stayed home a few minutes longer and found that phone. He would have had it with him, probably would have lost interest in it after a few minutes, and most likely would have tossed it into the basket of the stroller. Maybe, just maybe, he would have been satiated by the phone before we even got to the zoo and been more attentive to the animals that we were there to see.
We went to eat our lunch under a huge outdoor tent that normally has chairs and tables under it. Today it only had tables, no chairs. We plopped down in the grass to eat our lunch only to have a bee the size of my head take an obscene interest in me. It flew around me. It hovered around me. It landed on me. Several times. As this was going on, I grew progressively more concerned and by the time Miss Kathryn came over to tell me that it was just a carpenter bee and only the males/females (sorry, can't remember which) have stingers, I was shaking uncontrollably. Thank you, Miss Kathryn, but that isn't much comfort when
a) I don't have an entomological degree and therefore, cannot tell if said bee is female or male.
b) my father is nearly deathly allergic to bees.
c) I haven't been stung in so long that I don't know if I'm allergic or not and hence,
d) I don't carry an epi-pen.
We have carpenter bees around our property all the time and they're nothing new to me but they usually don't stalk me for ten minutes either. The ones we usually see also aren't the size of Texas and make me question the extinction of pterodactyls. Yes, it was that big. Don't believe the propaganda - there are ancients amongst us and pterodactyls roam the skies.
Right after what seemed like an insanely long time spent trying to get in four or five bites of my salmon salad on a bed of greens, Reiss took off running. My lunch was over and I finally caught up to him about a hundred yards into his sprint. Just as I returned, Milla crawled under the tent's side canopy. After retrieving Milla, James wisely declared he thought it was time to leave. Less than two hours into our trip to the zoo that was to be a four hour trip, we headed for the exit.
We did not visit the gift shop on the way out.
And oh yeah, I forgot to mention the blueberry my little angel, Milla, so delicately placed down the backside of my pants.
One parent in particular asked me "what good is an autism Act when we are sitting here with a child who doesn't know its own parents? He needs help, we can't afford it and in Northern Ireland, even if we could afford it, very little is available."
The autism charity AutismNI (Autism Ulster/PAPA/ACT) has lobbied for some time for legislation (they want it to be called the 'Autism Act') to underpin the "rights" of individuals with an ASD in Northern Ireland. When convenient, AutismNI/Autism Ulster rolls out their support of this non-existent Act to show how committed they are to the label of autism. The idea has dragged on for years, and I personally think that all it is, is really just a stick that AutismNI/Autism Ulster grabs to beat it's own drum.
One cannot examine the proposed legislation without looking at the organisation that is spearheading it.
From reading AutismNI/Autism Ulster's proposals for legislation, together with the autism Bill presented at Westminster recently, (neither are going to pass) these proposals are not about rights. They are about underpinning their self fulfilling prophesies that our children will always need help, and will always be viewed within a medical model, will always need services, will always have a label and will always be dependent on the state or their carers. Just like the NAS battle cry 'autism is a lifelong and incurable condition',(and don't you EVER forget it), AutismNI/Autism Ulster seems more interested in existing as an entity than in helping people with autism.
Instead of droning on about non-existent legislation, what they should be doing is providing members and the public with comprehensive access to new research in the world of autism and helping to secure the means to enable our children NOT to have to rely on legislation of services.
England has a multitude of educational facilities specifically tailored for young people with autism. The NAS has its own schools in England. Whether these facilities are 'good' or 'bad', at least they are something. In Northern Ireland we have nothing like this. What we do have is over 25 percent expulsion rate for children on the spectrum.
One guarantee for our young people is that if you do nothing, they will suffer.
Waiting for legislation to pass is in effect, doing nothing, even if it's good legislation. See the links on this page titled "Eddie's Recovery", "Kyle's Recovery, and "1 in 10 Recover from Autism". The NAS are lying and AutismNI/Autism Ulster are conspiring by their silence and refusal to publicise new and important research.
This is major news, but we haven't heard a peep from AutismNI/Autism Ulster. Why would we? When you believe autism is 'forever' or that there is very little that can be done, you can be sure that very little will change. For each and every newly diagnosed child, the same broken wheels turn - depressing diagnosis, no support for the family, limited services for the child, inappropriate nursery/primary school provision, no money, intransigence, etc, etc.
What is the autism Act going to do about this and when?
I have never contacted AutismNI/Autism Ulster, never met them or availed of their expensive training packages. This goes for many other parents I know. There must be some parents who attend their highly regulated support groups, (and of course who don't mind fundraising off the backs of other financially stretched parents), but I doubt very much that parents who 'question' are welcomed, at least from the stories I have heard. All parents who have a child on the spectrum have questions, perhaps those questions are asked outside the confines of the AutismNI/Autism Ulster living rooms cum 'offices'?
Perhaps Autism NI/Autism Ulster could answer some of my questions - from my site tracker, they have visited this blog no less than 218 times in the last month (11 times today, and it's not even 9.00am!) I hope staff members are not using 'company time' to do it. If you have questions about the efficacy or need of the proposed legislation, you could post them to this blog because the staff at AutismNI/Autism Ulster are definitely reading this.
Clearly there is something here that interests them. Almost 4000 people have visited this blog so far and I now know of two other parents starting their own blogs to discuss autism in Northern Ireland from their own personal perspective. With so much alleged 'support' being provided to parents by AutismNI/Autism Ulster where is the dissenting view? Surely one or two people have something to say publicly?
Like any good business, (and it is a business) Autism NI/Autism Ulster should understand the importance of a complaint department.
I guess all is rosy in AutismNI/Autism Ulster land? No complaints, no suggestions - no progress. The proposed autism Act has dragged on for years, its simply a stick that AutismNI/Autism Ulster grabs to beat it's own drum.
Legislation like the proposed autism Act guarantees more for service providers than it ever could for the individual. There is now a huge and growing service 'industry' surrounding autism and legislative proposals like these will go far to protect this industry and ensure our children will need that industry. AutismNI/Autism
Ulster is associated with Autism Initiatives (both organisations occupy the same location?? apparently
AutismNI has a deal on the rent at its premises as well). This group, among other things, runs care homes for persons with autism. These homes charge the resident hefty fees (basically one's entire DLA and more) for staying at their residences. People and organisations continue to make money from our children's diagnosis/label. It is for groups like these, that legislation will be for - cozy combination going on there - an organisation that purports to 'help' individuals with autism and their families, and a 'care home' organisation, ready and waiting to put those same kids into group homes. ???
Autism is becoming a make-work project and will continue to be viewed that way until parents understand the difference between what real 'help' is versus maintaining the status quo.
I personally, would support legislation that underpins the right of my child's access to educational opportunities and social opportunities, of his choice. Currently there is no choice in Northern Ireland. No ABA schools. Not one. No autism specific school, not one. The figure of 28 billion spent on autism in the UK certainly does not apply to Northern Ireland. There is no 'menu' to provide to parents with young children who want to help their children early.
Though I don't endorse ABA personally, I believe any parent who wants it for their child should have it. Same goes for other intervention models, that are proven to have measurable outcomes for our kids.
Education for our children at young ages is not just about education, its about 'intervention for the autism, first and foremost addressing the social communication needs of the child. The educational matters come second compared to our children's need to learn social skills and be able to advocate for themselves.
We need legislation to cover the costs of running an ABA, EIBI, RDI, or VB program, Fast Forward, etc. These programs don't come cheap and to run them well requires consultants and staff.
Where is the legislation to secure our children's access to these interventions? These interventions are in my opinion, a medical need. Many of our kids, probably most of them have physical difficulties emanating from neurological and systemic functioning differences these are their clinical needs. The studies on toxic environments, our children's inability to detoxify things like heavy metals, food additives, MSG, vaccinations - these don't even get a look in here in Northern Ireland.
At least PEAT isn't towing anyone's line except their own, which is to help children via ABA. They see their way as the only way but at least they are breaking new ground in Northern Ireland. You have to be single and bloody minded in this province to get anything done.
To not provide access to therapeutic programs is denying my child the right to a future. We know these interventions exist but they are very difficult to obtain here in Northern Ireland and more difficult find the money to pay for them. So the majority of us must accept a selection of 'special' or mainstream provision, both of which are usually wholly inadequate for our children.
This is where legislation is needed. I want an Act that addresses our children's social communication difficulties but furnishes them appropriate and sustainable educational and therapeutic services delivered by specifically trained professionals (not 18 year old underpaid classroom assistants) I can dream. I also would like legislation that doesn't cost other people with disabilities the price of their own services.
This Act is an attempt to 'streamline' the industry, make it as cost effective as possible. Gathering statistics is an important part of this proposed legislation. Knowing how many persons have a diagnosis will give the government and service providers plenty of information on how to tailor services, how much to spend, how much NOT to spend and where to spend it. I don't know if this kind of information is discussed at AutismNI/Autism Ulster coffee klatch support groups, but I doubt it. If it was, parents would think twice before signing their name to the Act proposal.
Personally, I do not want my son's diagnosis to be on someones 'list' as a statistic. Considering the number of children recovering from autism worldwide (not in Northern Ireland, mind you - wonder why) I would not want a former label, loaded with stigma to accompany him into adulthood if he did not have the condition. If he continues to have the condition, it's still nobody's business but his. The proposed legislation would be an infringement on my child's right to privacy.
Autism can be and often is, a "co-morbid" condition of other difficulties like Cerebral Palsy, Epilepsy, Down's Syndrome just to name a few. What about those persons who have autism as an addition to their other labels? How will legislation address the 'aut-ism' in these individuals if their first diagnosis is something else?
Clearly the Stormont Assembly have not thought about this judging from their recent ill-informed and mis-informed debate on the topic.
Scores of speeches, see here (http://www.theyworkforyou.com/ni/?id=2009-03-31.4.1&s=autism#g4.52 ) that were inordinately painful to read, waxed lyrical about the 'need' for legislation and not one of these speeches addressed the question of what really IS autism, and who really HAS it. In typical Northern Ireland style, an argument ensued when someone dared to question the efficacy of not only the proposed legislation but the driving force behind it (AutismNI/Autism Ulster)
Unlike the lemmings in the legislature, persons with an autism label do not follow any one path, do not think the same, do not feel the same. Complications like visual agnosia, semantic pragmatic disorder, dyspraxia, hypotonia, auditory processing delay, sensory integration disorder, and many many other difficulties are experienced by persons with autism. So if your child has Down's Syndrome accompanied by autism, what will an Act do for your child if autism is a secondary diagnosis? Where will the money come from, the entire special needs budget? Will the child with Down's Syndrome be 'paying' for the child with autism? The mind boggles.
In the Belfast Education Board's recent 'Senco News' magazine, (Edition 7, Spring 2009) it is stated that the Chief Inspector's Report found only 4 percent of pupils in Northern Ireland have a statement of Special Educational Needs (SEN). 17 percent of Northern Ireland pupils have been identified as having special educational needs (the real figure is much higher, and has been estimated at 25 percent or more).
Many of those pupils will have autism or autistic spectrum conditions. A statement of special educational needs is indeed a legal document. It has legislation to back it up. Yet, only 4 percent of those who need this document, actually have it.
Despite having this 'legal' document, many of those pupils will not be in receipt of their legal entitlement due to the document's failure to notate their needs and provision accurately. What a child needs and what a child gets in Northern Ireland depend on so many variables. If a parent does not strongly advocate for the child's right to entitlement, the statement could well become useless. Similarly, the post code lottery of entitlement in Northern Ireland is dictating whether children are receiving speech therapy, classroom assistants and occupational therapy. This has nothing to do with the law, it has to do with money. Clearly, the 'law is an ass in this regard.
What young people need today is legislation to back up the legislation.
You can see how legislation guarantees nothing, apart from money saving. Who more than AutismNI/Autism Ulster, has a vested interest in ensuring that services for individuals with autism are 'legislated', or that incidents of the diagnosis are counted and statistics recorded? Part of AutismNI/Autism Ulster/PAPA is their own profit making company 'Autism Community Training' otherwise known as 'ACT' (yes the acronym was deliberately chosen to reflect the charity's political ambitions). Are you getting the picture yet?
Jobs are at stake with AutismNI/Autism Ulster. God forbid that children don't need these services. God forbid, children with autism get appropriate education, social acceptance and understanding, independence even! - oh dear, we can't have that. "No, we must ensure that parents continue to be vulnerable, uninformed and that they rely on us, their children must always need services! - We have our contracts with the Health Trusts to protect!"
My child doesn't need this legislation. What he does need is the right to an appropriate and fulfilling education and the right to protection from exclusion/segregation/discrimination from society as well as the right to be completely accepted and welcomed in society.
What surprises me about AutismNI/Autism Ulster and their proposal for an autism Act, is that young people who have been through the medical/services system are supporting it. My son, despite his young age, has been maligned, de-valued, patronised and ignored by clinicians and so-called 'professionals, the kind of people this Act would inevitably support.
I am quite sure, he would ask instead for schools that accept him unconditionally, for teachers who don't judge him and who see the wonder in him and who take the time to read a book or two or attend conferences not presented by AutismNI/Autism Ulster, and who listen to parent experts like me. He would ask for social opportunities where young children and adults don't stare at him when he stims or who understand that everything he does has a reason behind it, and all those things make him unique, just like them, not 'different'. My other children would like to be able to go out as a family and know that their little brother is not going to be the butt of someone elses' joke or ignorant comment.
Would my child ask for legislation to ensure the continued employment of the paediatrician who told his mother that he would never talk and should be institutionalised at a tender age?
I doubt it.
There are so many parents who continue to buy the negativity, hook line and sinker, that is doled out to them by so-called 'professionals' regarding their children and their limited 'potential'. This Act fits in nicely with that mindset, and bolsters the clinicians who to this day tell parents that their children will 'never' walk, 'never' talk, will 'never' attend mainstream school, never have friends, etc. Imagine if such an Act was to read: 'to secure the right of every person with a disability to a full and productive life devoid of the negative and injurious belief systems of others and to make it a crime to project your negativity onto a young child or adult alike'.
Securing the rights of persons with all disability is what we need. Label driven legislation will never work, and is inherently discriminatory. Guess what? We already have it with the Disability Act.
Upon reading the speeches of 31 March at Stormont by MLA's regarding this proposed Act, my heart sank at how incredibly ill-informed, backward and dangerously parochial these people are. We voted these people in, we need to inform them. They are clearly taking their direction from AutismNI/Autism Ulster. Not one of them admitted to speak from personal experience of autism and it was, in my opinion a mutual appreciation exercise.
Why wouldn't they support AutismNI/Autism Ulster. With the offer to MLA's of free junkets to Washington (which they accepted and apart from only one of them, never publicly divulged their involvement) and substantial money paid to buy lobbying 'tables' well, you just can't beat the influence of a pound.
Buying legislation is popular in today's politics and those who praised AutismNI/Autism Ulster during this debate, were among those whose tickets to Washington were paid for by the charity (I use the term 'paid for' loosely - the monies were inevitably culled from AutismNI/Autism Ulster's membership fees/fundraising events). If they specifically raised money for the purpose, they did not publicly advise their membership.
Nothing in this world is for free and those members who accepted this freebie trip (and all the other goodies that AutismNI/Autism Ulster may have plied them with) are now expected to 'pay back' by supporting the idea of the autism Act. Classic!
Dominic Bradley (Social Democratic and Labour Party)
"...Deputy Speaker. During the debate on world autism awareness day, which was held on 31 March 2009, Mr Savage made a remark that could be construed as meaning that Members benefited financially from their work with the charity Autism Northern Ireland. Members of the all-party group on autism, and Autism Northern Ireland itself, expressed extreme concern to me as chairman of the all-party group about the import of those remarks. Therefore, I ask that the Speaker examine those remarks and rule whether there are grounds for asking the Member to withdraw them. "
Perhaps Mr Bradley who is very au fait with AutismNI/Autism Ulster would like to explain to the Assembly and to the rest of Northern Ireland what it all does mean - who paid for this excursion and why? Nothing has come of it from what I can gather. It just sort of hangs there in the ether with a big question mark over it.
Best to clear it up once and for all don't you think Dominic?
see link to Register of Members Interests here: ( http://www.niassembly.gov.uk/members/expenses/register2.htm )
"One of the penalties for refusing to participate in politics is that you end up being governed by your inferiors." - Plato
Socrates was also known for posting questions to which there were many many answers, none of them 'correct'. Northern Ireland needs some Socratic method - questions are not being posed, much less answered. This in itself poses another question - why?
What are you afraid of? Please speak up.
Sunday, May 10, 2009
"On Being Mom" by Anna Quindlen
If not for the photographs, I might have a hard time believing they ever existed. The pensive infant with the swipe of dark bangs and the black-button eyes of a Raggedy Andy doll. The placid baby with the yellow ringlets and the high piping voice. The sturdy toddler with the lower lip that curled into an apostrophe above her chin.
All my babies are gone now. I say this not in sorrow but in disbelief. I take great satisfaction in what I have today: three almost-adults, two taller than I am, one closing in fast. Three people who read the same books I do and have learned not to be afraid of disagreeing with me in their opinion of them, who sometimes tell vulgar jokes that make me laugh until I choke and cry, who need razor blades and shower gel and privacy, who want to keep their doors closed more than I like.
Who, miraculously, go to the bathroom, zip up their jackets and move food from plate to mouth all by themselves. Like the trick soap I bought for the bathroom with a rubber ducky at its center, the baby is buried deep within each, barely discernible except through the unreliable haze of the past.
Everything in all the books I once pored over is finished for me now. Penelope Leach, T. Berry Brazelton., Dr. Spock. The ones on sibling rivalry and sleeping through the night and early childhood education, all grown obsolete. Along with Goodnight Moon and Where the Wild Things Are, they are battered, spotted, well used. But I suspect that if you flipped the pages dust would rise like memories.
What those books taught me, finally, and what the women on the playground taught me, and the well-meaning relations -- what they taught me was that they couldn't really teach me very much at all. Raising children is presented at first as a true-false test, then becomes multiple choice, until finally, far along, you realize that it is an endless essay. No one knows anything. One child responds well to positive reinforcement, another can be managed only with a stern voice and a timeout. One boy is toilet trained at 3, his brother at 2. When my first child was born, parents were told to put baby to bed on his belly so that he would not choke on his own spit-up. By the time my last arrived, babies were put down on their backs because of research on sudden infant death syndrome.
To a new parent this ever-shifting certainty is terrifying, and then soothing. Eventually you must learn to trust yourself. Eventually the research will follow.
I remember 15 years ago poring over one of Dr. Brazelton's wonderful books on child development, in which he describes three different sorts of infants: average, quiet, and active. I was looking for a sub-quiet codicil for an 18-month-old who did not walk. Was there something wrong with his fat little legs? Was there something wrong with his tiny little mind? Was he developmentally delayed, physically challenged? Was I insane? Last year he went to China. Next year he goes to college. He can talk just fine. He can walk, too.
Every part of raising children is humbling, too. Believe me, mistakes were made. They have all been enshrined in the Remember-When-Mom-Did Hall of Fame. The outbursts, the temper tantrums, the bad language, mine, not theirs. The times the baby fell off the bed. The times I arrived late for preschool pickup. The nightmare sleepover. The horrible summer camp. The day when the youngest came barreling out of the classroom with a 98 on her geography test, and I responded, What did you get wrong? (She insisted I include that.) The time I ordered food at the McDonald's drive-through speaker and then drove away without picking it up from the window. (They all insisted I include that.) I did not allow them to watch the Simpsons for the first two seasons...What was I thinking?
But the biggest mistake I made is the one that most of us make while doing this. I did not live in the moment enough. This is particularly clear now that the moment is gone, captured only in photographs. There is one picture of the three of them sitting in the grass on a quilt in the shadow of the swing set on a summer day, ages 6, 4 and 1. And I wish I could remember what we ate, and what we talked about, and how they sounded, and how they looked when they slept that night. I wish I had not been in such a hurry to get on to the next thing: dinner, bath, book, bed. I wish I had treasured the doing a little more and the getting it done a little less.
Even today I'm not sure what worked and what didn't, what was me and what was simply life. When they were very small, I suppose I thought someday they would become who they were because of what I'd done. Now I suspect they simply grew into their true selves because they demanded in a thousand ways that I back off and let them be.
The books said to be relaxed and I was often tense, matter-of-fact and I was sometimes over the top. And look how it all turned out. I wound up with the three people I like best in the world, who have done more than anyone to excavate my essential humanity. That's what the books never told me. I was bound and determined to learn from the experts.
It just took me a while to figure out who the experts were.
Later on, I hope to get all their winter clothes pulled out of their closets and rearrange the remaining summer clothes and everything else. If anyone has any good ideas for storing toddler shoes in a closet that is about the size of a cereal box and holds Milla's clothes, package after package of diapers (probably about 15 of them! I always buy them when I can get a good deal - not only as needed, like a lot of people tend to do.) and wipes, extra toys that are bought as I find them on clearance, extra crib parts, and so many other things...please let me know. Needless to say, there really isn't room in there for a pre-fab shoe storage unit.
As part of my Mother's Day post, I wanted to post a short writing by Anna Quindlen that I found earlier this week on another website. Ms. Quindlen wrote about being a mother and how her days of reading guides on raising children and following the advice of professionals are over...it was quite touching, but unfortunately, I cannot get the other website to pull up right now to do a hyperlink or a cut and paste of the writing.
Instead, I will direct anyone reading to the site of one of my favorite bloggers:
I'm not kidding when I say this woman has saved my sanity on several occasions. I figure if she can mother sixteen children as well as she does, then surely I can survive two children.
Thursday, May 7, 2009
Today, I am thankful for:
1) Living in a country where I can do whatever I please.....well, within reason, of course. Today is National Day of Prayer, so get prayin' people and be thankful you live in a country where you will not be persecuted for your beliefs!
2) The internet. Without it, I honestly don't know how I would come across all the information I find. Actually, I probably wouldn't come across any or even very little of the information I get if it weren't for the wonderful world of cyberspace.
3) Today being a wonderfully sunny day. Hasn't been too hot....not too cold...just right. After picking up Reiss from preschool, we made a quick stop in at the grocery for sparkling water, one of the few things Reiss will drink. It's nasty, in my opinion, but he likes it and it's better than giving him a real "pop," as he likes to call the sparkling water.
After the grocery, we got "funky fries" - a.k.a. waffle fries - from Chick-Fil-A and I got BOGO McCafe's and a stamp on my coffee card. Besides the two McCafe's, I have only had a South Beach snack bar today. Eatin' healthy today!
Then it was off to the shoe store for the kidlets. Thirty minutes and a lighter wallet later, both children have new shoes - neither being exactly what I was looking for. Oh well...Milla's shoes were 25% off because they were last year's style, which I couldn't care less about but I'm definitely not going to turn down a discount, even if it means my little diva has to wear something that is SO last year (it's sarcasm, folks!). Plus, I had a $10 off coupon so I feel like we did pretty well for not getting what we went in there to buy.
We went in for white tennis shoes (sneakers) for Reiss. He now has new brown "work" shoes because all the white shoes they had only went up to size 8 and he wears a size 9. I didn't really have anything particular in mind for Milla but what she got isn't what I would have picked out. The girl brought them out just to see if I liked them and I did and they fit and they were "last year's stuff" so on Milla's little tootsies they stayed. Even at only 18-months-old, I think Milla knows a thing or two about new shoes being cool. She seems to kinda prance around in these new shoes. She's sweet and funny all at the same time.
Wednesday, May 6, 2009
Reiss posing with the construction worker dude at the Children's Museum during our latest visit. By the way, if you ever make it to Indianapolis, this is a must-see attraction - with or without children. The Children's Museum of Indianapolis is the largest of its kind in the world.
Even divas sometimes take a break from playing for photo ops.
They both look so serious....
Milla ready for a luau. James and I got these straw hats and flower leis at the Dollar Tree when we were out Sunday for our lunch date. We had to go there anyway, so we got these as a cheapy treat.
Monday, May 4, 2009
Sunday morning, we did what has become a semi-"usual" Sunday breakfast for us: I made vegan banana waffles. No, we are not vegans but the recipe is and we love it. I posted a link for it from Vegweb some time ago but now I have the recipe memorized, so here it is:
Banana Oatmeal Waffles
2 c. oatmeal
2 c. water
1 T. sugar - I use different sweeteners each time. Yesterday, I used agave nectar.
1 t. vanilla
1/2 t. salt
Blend all ingredients in blender under very well blended. Let sit for a minute or two and then pour into well-oiled waffle iron. Cook until desired brown color.
Because there are no eggs, there are no worries for uncooked ingredients and you can cook the waffles as light brown or as dark as you like. We love this recipe and it's especially good with the real maple syrup we buy. If I ever write a cookbook called something like "Healthy Cooking for Morons" this recipe will be in it. Seriously, it's that simple.
Sunday afternoon, James and I had "Date Afternoon." I don't even know what to call this. When you go out childless in the evening, it's called Date Night. So what is it when you go out during the day? Date Day? Date Afternoon? Lunch Date? Escape? Whatever....so anyway, we decided to try out a relatively new restaurant in our area: BJ's Brewhouse. The name makes me laugh every time I hear it. I can't help it. Call me a perv.
To give a little background, I don't consider myself one of perverted mind but every time I hear of someone named BJ or, in this case, a restaurant called BJ's Brewhouse, I can't help but think of the perverted implication of these two letters when used in conjunction with one another. Recently, I was checking out a website I occasionally frequent that sells personalized t-shirts, household items, etc. On the site's homepage, there was a girl wearing a t-shirt that said, "I love BJ." The site doesn't seem like the kind of online store to promote such a thing on their opening page, so I couldn't help but wonder if it was a mistake or the website owner doesn't realize the implication or what. At any rate, I wondered more about the girl wearing the t-shirt. Who in their right mind would wear such a thing? And even if you do "love BJ" is it really something to go advertising across your chest??? Okay, tangent over, back to our regular scheduled blogging.....
Usually, I'm not terribly keen on "chain" restaurants, but now and then I will make an exception and yesterday was one of those days. So, chucking my food snobbery and distaste for franchise-style joints for the afternoon, James and I had our lunch date at BJ's Brewhouse. I joked with him that when we returned from our date that he could brag to our friends who were watching Reiss and Milla that he got BJ's for lunch. Okay, okay....really, I'll stop now.
At BJ's, James got a BBQ sandwich and I got a Turkey Cobb sandwich. Both were served on garlic-parmesan buns. My Turkey Cobb was turkey, lettuce, tomato, avocado, bleu cheese dressing, and bacon on the aformentioned garlic-parmesan bun. The sandwich was really yummy and I was very appreciative of the strong garlic flavor of the bun.
Fast-forward to about fifteen minutes after I finished eating and I was again reminded of why I don't like to "cheat" on my dietary rules. Naughty foods always taste really, really good while I'm eating them but not long after consumption they always seem to be like a bratty tweener child and start talking back to me. Yesterday was no different and I'm glad today is Monday and my digestive system is back to being on track with allowable foods.
I've had a sore throat for around two days now. With the weather starting to turn and the days sunny, I'm hoping this little bug or whatever doesn't decide to take up long-term residency in my body. Cold weather is not my idea of fun for being outside but I absolutely love Spring and warmer temperatures, so it figures that right as things start warming up, I'm not feeling 100%.
Now that I've sufficiently bored the tar out of anyone reading, I'm going to get off here and go put a flashlight in my mouth to inspect my throat. Hopefully, my next post will have some photos....of the kids having fun the last few days, not of my throat.
Saturday, May 2, 2009
As is always the case on Saturday mornings, James and Reiss made pancakes and sausage for breakfast. Plain with maple syrup and "white" (powdered sugar) on top for Reiss. Occasionally, he will eat a blueberry pancake too, but he really just likes to eat the blueberries before they are buried in batter. For Daddy, it's plain pancakes and blueberry pancakes with maple syrup. That is, unless Reiss insists James put white on his as well. Mine are chocolate chip and pecan and blueberry and pecan with maple syrup. Occasionally, I will slice a banana on top. Milla doesn't - or perhaps I should correct myself and say won't - eat pancakes.
After breakfast, Reiss and James went outside to mow the front and side lawns. James uses the real mower and Reiss uses his toy mower we got at KMart a few years ago. Today, the KMart mower decided to die. R.I.P., little toy lawn mower. So, another thing on the agenda for today: Go buy another mower. Normally, we don't just go buy our children things for the heck of it but the toy mower is one of the kids' favorite toys so with the old one breaking, we decided it needed to be replaced.
A little later, we attended a First Steps Family event. First Steps is Indiana's name for early intervention for infant and toddler developmental programs. It is called First Steps here and in a few other states. In other states, it is called something else but I can't recall exactly what right at the moment. It was not an "open" invitation event, but rather an event where only First Steps recipients and their families could attend. Milla gets speech therapy through the program so we received an invitation.
Children in attendance at the fair were allowed to pick out three books for free. So we came home with SIX brand new books for which we didn't spend a single penny! There was a girl "manning" the book tables - there were FOUR huge tables of books to choose from - and she was wearing a Target shirt and the bags that were given out for people to carry the books were Target bags. One could reasonably conclude that Target played a part in providing the books at no charge, so thank you, Target!!
There were was a firetruck and an ambulance there - outside, of course, not inside with all the other stuff. The firefighters brought safety dogs with them and put on little shows with the dogs demonstrating fire safety. In addition to the book tables, there was a free ID card station and table after table of informational literature on programs for children of all levels of special needs.
There were two reps there who gave me some very helpful information regarding the Medicaid waiver program for children with learning disabilities. And before anyone judges me at the mention of the word "Medicaid," this program is open to people of all income levels. Even if the child does not meet certain requirements for all benefits while under the age of 18 because of family income levels, they do qualify for it once they reach eighteen years. It's very confusing and too much detail and drama to try and explain in a blog post that is meant to be a light-hearted recounting of our Saturday.
They also had tables of water bottles, bags of chips, cookies, hotdogs, and lemonade - again, all for free! LOVE, love, love FREE! Eating the way we do, we couldn't have everything there though, so I grabbed a bottle of water, a few bags of chips, and two lemonades. We popped a squat and drank the lemonades and off we went to see the firetrucks outside before leaving.
One of Reiss's favorite things in the whole world is firetrucks. Just don't blow the horn or he will freak out. We always make sure any fire personnel we come in contact with when looking at firetrucks know this and politely ask them not to blow the horn. They are always happy to oblige because even they don't like being so close when those things go off. They will do it for children who ask but they say those children usually want them to do it over and over. Too much noise, if you ask me. Good thing Reiss has noise sensitivities!
We climbed all over the firetrucks, inside and out. Reiss got to listen to his heartbeat with a stethoscope in the ambulance. He ran his Hot Wheels truck he was carrying all up and down the stretcher. He and Milla both tried phoning in an emergency. Okay, not really, but they were very taken with the phone and cb speaker or whatever it's called. They played and jumped around inside both trucks with several other children but not once did any of the other children ask to hear the firetruck horn....thank goodness!
As we were leaving the church where the fair was, which just happened to be the same church where Reiss goes one day per week for Parent's Day Out, he and Milla sat down on the little childsize park bench. It was precious and once again, I was kicking myself for not carrying our camera with us at all times.
Next we went and got lunch from the usual Saturday place and brought it home for a picnic out on the deck. Reiss, Milla, and James ate their lunches. I ate nothing and finished off the bottle of water from the fair. Since yesterday morning, I have had rotating flu symptoms. First, it was a headache, then achy body pains and then it was a sore throat. Today, it has been achy body and sore throat and no appetite since breakfast. I'm just glad it's not so bad to prevent us from being able to enjoy the weekend.
After everyone was sufficiently done feeding their faces and throwing the "dirty" almond cookies (we tell Reiss they are dirty because they contain gluten and he cannot eat them) off the deck that are always given to us by the Asian restaurant owners, we headed for KMart. KMart did not have a toy lawnmower.
Next up, ToysRUs. They only had two types of toy mowers and no cheapy $5 ones like the one we were replacing. One of the mowers they had was a bubble mower. No, no, no. Big fat Mommy veto. No more "bubble" toys. We have a zillion of them and probably every single one is currently sitting in the garage covered in a thin layer of bubble "slime" - what I call the bubble solution when it dries after the toy is not cleaned after use. The only other choice was a popper mower of sorts. The balls in it are very small. It doesn't make anywhere near the amount of noise a traditional "popper" toy makes.
$25.99 (not including tax) later, we have a new toy mower. Yes, I balked at the price and no, I didn't want James to shell out that much money but I also didn't want to drive all over town looking for a new toy mower, at naptime, no less. New mower in hand and everyone strapped safely into the Mommy truck and home we came.
Milla fell asleep approximately fourteen seconds into the ride home and Reiss sang trying to wake her. We got home and Reiss played outside for quite some time, covering nearly every square inch of grass we own with Daddy in tow. They both came in and headed for a good place to nap and that brings us to now....Everyone is asleep but me! And I'm the one not so hot so I am getting off here and going to get some Z's while it's still quiet. Na-nite! (at 4:30 in the afternoon!)