Friday, February 26, 2010

Epic Beard Man

In case you've missed one of the most covered news stories this year.

This guy is all over Youtube.

Tom Slick - AKA Vietnam Tom - AKA Epic Beard Man.

Milking his 15 minutes.

Thursday, February 25, 2010

GFCF Hot & Steamy Chocolate Silk

After a particularly cold jaunt to the great outdoors with my never-affected-by-the-freezing-temperatures four-year-old, I was able to persuade him to come in with the promise of getting to assist me with making hot cocoa from scratch.

Never in a million years did I think our attempt at throwing a few ingredients together would result in something so yummy, but the end product was a drink so rich and creamy smooth, it was like drinking chocolate silk. If hot cocoa can possibly be thought of as sexy, this stuff was Robert Redford, Denzel Washington, George Clooney, and Brad Pitt (or whomever floats your boat) all wrapped into a cup of hot and steamy relief from a half-hour spent out in bone-chilling windy tundra-like temperatures. Okay, I'm exaggerating, as usual, but in my defense, it is February. In Indiana. And I am done with winter.

So to cut to it, the following is what we concocted:

4-5 ounces filtered water
4-5 ounces coconut milk (not coconut oil or coconut cream)
2 tablespoons Sun Crystals (or sugar or sweetener of your choice to taste)
3 heaping teaspoons unsweetened cocoa powder
1/2 - 1 teaspoon gluten-free vanilla
dash of salt

Mix the water and coconut milk together in a mug and microwave until desired temp. Mix sweetener of choice, cocoa powder, and salt together in separate small bowl. Mix both mixtures together and stir in vanilla. Stir until all the cocoa powder mixture is blended well into the liquid.


Tuesday, February 23, 2010

IEP's, Dinner For Dummies, and Other Ramblings

This evening my husband and I have a meeting to go to regarding the ABA center we are helping another couple get started. Actually, that makes it sound like we are playing some major role in the opening of a fabulous ABA facility but in reality, all we are doing is providing word of mouth to others in the autism community and a place for the couple to hold their presentations to get families interested in their center.

I'm very excited about it all but I'm also very tired. We have been going and going and going for around two weeks now and I just want a nap.

This morning was Reiss's case conference for his IEP and I gotta say, it wasn't nearly as bad as some of the nightmare stories I hear from friends who go in with a "team" of people ready to do battle. Of course, I don't have the same problems many of them have. We do have problems with Reiss running out of the classroom on occasion but luckily, it has not been out the door leading to the parking lot, but rather, the door leading out of his classroom and into the hall. We don't have problems - that I am aware of - with his teacher or aides giving him food that is not on his diet. And since we provide a box of snacks for him from home, they would have no reason to do so. We don't have problems with unfair punishments or have to deal with forms of discipline that some consider torture like so many parents of children with autism have to read about. Yes, it really happens...just look HERE if you don't believe me. By the way, that particular school system is notorious for incidents with their students in special services classrooms. Not long ago they also had one little girl with autism who was bitten in the classroom and force fed. I am, however, too lazy to go dig up a link for that as well though. So have at it, go Google yourself silly if you so desire.

Anyway, the only changes we made were to have Reiss's IEP written to include his dietary guidelines and his Diastat injector - just in case of another seizure - under the Health guidelines section. Because they have been having some behavioral problems in the classroom recently, there were also some behavioral modification plans made to accommodate for when Reiss fully rejects their current form of discipline, which is a combination of popsicle stick pocket pulls, 1-2-3 Magic, and timeouts. It sounds like a lot but it's basically 1-2-3 Magic adapted to a classroom setting. His teacher feels it is only effective for him a small part of the time and we will soon need to move on. It's amazing how this is exactly what she told me usually happens around mid-way through the year with the majority of the children, and although this is a little past midway, she was exactly right.

Moving on...

Today I made muffins. THIS is the recipe I used, as I often do. This recipe should have been more aptly name No-Fail Muffins or Muffins for Morons because it is so darn adaptable. These muffins simply cannot go wrong. They call for applesauce but I have also substituted the applesauce with bananas, zucchini, squash, and pumpkin, all with spectacular results. Today's applesauce sub was zucchini. They're so well-packed with good fats, proteins, and fiber that I don't even have an inkling of remorse serving these for a meal with a little fruit or something on the side. Because we have to get dinner on the table and out the door in a hurry this evening, we are having these muffins, some bacon, and whatever fruit we have on hand. I think there are some pears and apples that need to get gone, as well as some kiwis that Reiss will probably hoard all to himself.

Today we had carpet installed in our bedroom. I know, I know - don't tell me about all the harmful crap they put in that stuff. We purchased this carpet around a year ago when we had just begun making dietary changes, getting chemicals out of the house (we're still working on that one!), and frankly, we were just plain ignorant. If I knew then what I know now, we would have gone with running the wood laminate floors on into the bedroom or gone with a "green" carpet free of chemicals. What's the saying? Hindsight is 20/20 and considering the expense, it's not something we were going to just cut our losses and chalk up to experience.

After nearly a year straight of off and on (a lot of "on") people working on this or that in our house, I am ready to take a break. I am ready to close our doors and not have anyone work for us anytime soon. Ironically, we are getting ready to start our in-home ABA program and there will be people in and out of here every single day and for even more hours than all the remodeling projects put together but at least these are people working on a totally different aspect of our lives and not on our house and leaving messes in their wake when they leave for the day.

Thankfully, you can barely tell anymore that this is a 1974-built house. Other than the main bathroom, every room on this floor has been totally updated or had major modifications made to it to bring it into this decade from a decorative standpoint.

These monkeys are waking up from a nap. Reiss conked out on the chair in here during a phone call I was on earlier and Milla is on the couch. If you have read this far and are not bored to tears, I'm not sure whether to applaud your ability to focus or feel sorrow that you must have a really boring life that you could find my ramblings and my own mundane life ventures entertaining. At any rate, thank you for reading and leave a comment if you feel so inclined - I do read them and very much appreciate them, even if I don't acknowledge them as often as I would like.

Biltwell Struts

Biltwell struts? Yes, you read right.  Biltwell does not only make helmets, among many other things, but hardtail struts as well.  I finally got some time in the garage over the weekend and I managed to make a little progress on my bike.  It's almost March, and before you know it Spring will be here.  With that being said - I figured I should try and get my bike done before riding season hits us here in Canada.  I still have a few things I need to do, or want to do.  Ill try and get the 'needs' out of the way first.

A few things I need to do:
- Install Biltwell struts. Check.
- Install new 'No School Choppers' licence plate/bracket. Check.
- Wire 'No School Chopper' licence plate lights. Wiring is something im not comfortable with.  I'll most likely take my bike down to the shop and get them to wire it correctly once I'm finished with everything else.
- Install new bullet led brake lights and signal lights.  I need to find some proper mounting position which won't be an issue, but again I'm hit with another wiring issue...
- Measure, cut, chop, grind, paint and install new rear fender.  This is a big job to do.  If I measure wrong or make a wrong cut then I'm effed.  I have one fender. Im not ordering a new one. Once its cut and measured properly then Im gonna give painting a shot.  Again - something Ive never done before. Its not rocket science.
- Cut rear fender struts.  This is going to impact my rear fender.  I have to align my fender correctly and not cut to much off the struts or I will lose my mounting area.  Being that I've never done this before I could really eff my rear end up.  Shouldnt be to hard.
- Install new headlight w/bracket.
- Wrap exhaust.  Im gonna try and do that this coming weekend.  This will give my bike a real cool look.  Having a 2-into-1 exhaust will be a bit of a challenge as well.  Im wrapping it with a bright white wrap, rather then the black wrap that I was originally planning on.

Other then all that - Im golden.

Here's a few pics of my new Biltwell struts and my new licence plate.

Thursday, February 18, 2010

And On A More Positive Note....

It felt good to vent a bit on Tuesday but lest anyone think all I do is complain about autism, I figure anyone spending any amount of their time reading my blog deserves to hear some good news as well. You know, to equal things out. Here are some of the breakthroughs we have witnessed with Reiss over the last (nearly) year and a half since we began dietary restrictions and supplements:

Regarding speech......
Although Reiss has been quite verbal since beginning communication with speech as a toddler, his speech wasn't always functional. His speech seemed a tad delayed, then it took off, and then he started losing some of it. At around eighteen months of age, he used to do the cutest thing. He would say, "Awesome!" and do a little fist pump into the air. Soon after, he stopped doing it. As the months passed, this wasn't the only thing he lost, it was simply the most memorable.

Reiss wouldn't talk a whole lot except to repeat things. Engaging in a conversation with him was non-existent. He had a lot of repetitive speech (echolalia). He had pronomial confusion - he confused I, you, me, and the possessive forms as well. For example, he might have said, "You want the waffle." but what he really meant was that he wanted the waffle. He could not answer a simple "yes" or "no" question, nor any type of who, what, when, why, or where questions. And he definitely couldn't ask any questions. At all. We never went through the "Why? Why? Why?" phase with Reiss that most parents complain about with their children during the toddler years.

The way it was explained to us by the special services school officials who evaluated Reiss for entrance into developmental preschool, many of these kids don't even understand that a question is being asked and that a response is expected. It doesn't matter that a typical person changes the inflection when asking a question, children with autism many times just don't understand. And that explains why I used to have to tell Reiss "I need a yes or a no, please." when asking him that type of question. Still, often times, he would reply with whatever pleased him and not necessarily the correct answer. I think he knew I was getting frustrated and he was just as frustrated and figured any answer would shut me up.

If something hurt, Reiss could not tell us it hurt. He could not tell us what happened if something got hurt when we had our heads turned and didn't see him fall or bump his head or stub his toe. One can only imagine how frustrating and heartbreaking it was when Reiss, at 28 months old and on the day before I was scheduled to have a c-section for Milla, hurt his leg going down a slide and couldn't walk. We knew something was wrong with his leg but he couldn't tell us exactly where it hurt. Pointing to things to try to find the source of pain was, well, pointless. We would point to his ankle and ask if it hurt and he would nod his head. We would point to his knee and ask if it hurt and he would nod his head. We would then point to say, his nose and ask if it hurt and once again, he would nod his head. That entire incident was about $3000 worth of medical bills and a leg cast for several weeks, only to be told by the doctors that they were certain his leg was not broken but otherwise, had no clue why he would/could not walk on it. (And people wonder why I have so little faith in the majority of medical professionals. This is only one example of why, but I promise, I'll save that tangent for another day.) Within a few days of getting the cast, Reiss was walking again but still couldn't tell us what hurt.

After only a few weeks of being on a gluten-free, casein-free diet, Reiss's language in terms of functionality grew by leaps and bounds. He was answering questions more and more as the days passed. He seemed to better understand the dynamics of speech and how it could get him what he wanted. There are times when Reiss still has some issues with holding a conversation but he can certainly answer just about any type of question now. "Why" questions seem to be the most difficult for him but he will sometimes make up an answer - even if an illogical one. If it means I get an answer when I ask a question, rather than a blank stare, I'll take it!

Regarding sensory hyper-sensitivity.....
My most vivid memories of Reiss having hyper-sensitive senses are of the many, many months where he would just bawl his little eyes out if the phone rang. The vacuum cleaner seemed to be torturous to him. If a door was closed, not even slammed, the poor little guy was ready to jump out of his skin. He would stare at lights and giggle. Car rides were painful...for everyone involved. A simple ten minute ride from Point A to Point B almost always ended in an hour of trying to console our poor baby. We didn't know then that all of these were exactly what they seemed to be for him: way too much sensory overload for him to handle. I remember a particular family member chastising me for keeping the phone off the hook during naptimes and also for not wanting to go anywhere that required a long (in which, "long" consisted of anything more than fifteen minutes) drive. I was told, "Well, he needs to get used to it!" as if forcing him into these situations of enduring the phone ringing or riding around in the car or whatever else would somehow eventually ease the real pain going on in his little body.

Reiss did begin to very, very slowly outgrow most of these things but still, until we began dietary changes, rides in the car were not fun for anyone and the pain of hearing the vacuum cleaner was just simply too much for him. These days, Reiss loves to run the vacuum cleaner himself. Car rides are much easier, although I cannot say they are much quieter. However, the difference now is that it's a more joyful noise on most occasions.

Regarding sleep.....

Most people don't believe me when I tell them about Reiss's sleeping habits as a baby and on into toddler-hood. Occasionally, even other parents of children with autism don't believe me because sleep was not an issue with their child with ASD. But here it is and it is the honest to God's truth and it takes another parent who has been through it to fully comprehend that it really can be this bad.

Having been in the military and gone through Basic Training, I thought I knew sleep deprivation. Until Reiss came along though, I was clueless. Reiss never slept through the night until he was three-and-a-half years old. No, really, I'm serious - not ever, not even one time. And yes, I'm aware that the so-called experts consider six hours of straight sleep for an infant is considered "sleeping through the night." As a baby and up until he was around nine months old, Reiss would wake every fifteen to forty-five minutes, all through the night. I remember telling people this and they would think I was exaggerating. I always got the ol' "It will get better in a few months." answer. But it didn't get better. And of course they thought I was exaggerating - that simply is not a typical sleep pattern for an infant. But I didn't know that then. Well, I did know that but everyone told me I must be exaggerating so naturally, I just thought that it must be that bad with all infants and I was just being a wimpy new mommy. I also remember thinking that I didn't know why anyone would ever want more than one child. How would they ever get any sleep again?

Around the time Reiss was eight or nine months old and I was nearing the end of my rope due to total and complete sleep deprivation, I decided to let Reiss co-sleep with us. Co-sleeping improved his sleep habits but they were still very poor for a child of nine months. By then, he was still waking just about every hour. There were times when he didn't wake but he would laugh hysterically in his sleep. (You parents of children with autism, you know what I'm talking about and you also know that it probably seemed cute and adorable at one time but is now a nightmare come true if your child still does it.) If I was able to drop-off into a deep sleep for only two hours before he woke, I considered myself extremely lucky.

Reiss's constant waking continued for months and months. And years. He had begun sleeping in a toddler bed but was still waking quite often and many times in a state of ear-piercing screams and was unable to be consoled. Sometimes the "waking" when he was screaming those horrible screams was not him waking, but most likely night terrors, in which he was still technically asleep.

If you don't believe what I told you about Reiss's sleep habits before we began a GFCF (gluten-free, casein-free) diet, you almost certainly won't believe what happened after we began eating this way. The very first night after eating this way for an entire day, Reiss slept through the night, all night, without a single wakeup. I knew this diet was going to be a real pain for us and it created even more challenges of its own (as if we didn't already have enough things working against us), but it was that one thing - Reiss sleeping through the night after three and a half years of life and never having done so even one time - that convinced me that we had to keep on with this diet and at least make an attempt at improving the other troublesome symptoms Reiss exhibited.

Regarding stimming (self-stimulatory behaviors).......
Reiss exhibited many of the stereotypical stimming behaviors in autistic children. He toe-walked. At the time, I didn't know this was one of the signs of autism. Although not to the extent of many children with more severe autism, he flapped his arms. I didn't know that was one of the signs of autism either. He would spin in circles, sometimes with his hands at his sides and at other times, with them held out at shoulder level. I didn't know that was a sign of autism. He would lie on the floor, literally for hours on end rolling a truck back and forth, back and forth (to a point where he would throw a tantrum if we needed to leave the house or transition to doing something besides rolling that darn truck). I didn't know he was stimulating his visual sense by watching the wheels spin. I also didn't know that was another sign of autism. He had to have his shoes on all the time. And I mean all the time - even to bed at night. He would throw a fit if even one drop of water got on his shirt. He would get bent out of shape if his fork and plate sitting in front of him were accidentally bumped and moved just millimeters. All of these quirks, stims - whatever you want to call them - are signs of autism, yet every single one of these behaviors was dismissed as being normal toddler behavior when we brought them to the attention of our family doctor. We would tell our friends and family about our concerns and not once did anyone ever tell us that these are all signs of autism. We were always encouraged to believe these were all normal behaviors for a toddler. But we knew...we just knew something wasn't right.

We began treating Reiss with diet and supplements before he was diagnosed with autism (but WE had known for a long time!). His stimming behaviors began dissipating immediately. Occasionally - but not very often - we will see Reiss spinning in circles but it's a different kind of spinning. I know that sounds strange and I don't know how to explain it, but it's true. We do not see any of the other behaviors on a regular basis anymore. Sometimes Reiss wants to get water on his shirt. Other times he doesn't even want one drop of it near him. But having said that, it's not like it used to be where he was consistent with throwing a tantrum every single time his shirt inadvertantly came into contact with a drop of water.

As you can see from my post on Tuesday, we still have many of the tantrums and undesirable behaviors but we are learning and working and researching and tweaking this way of life of dietary restrictions and supplements, with the help of Reiss's DAN! doctor, to find what works to solve his problems and what does not work for him, as an individual. Overall, I think Reiss has come a long, LONG way in only a little over a year. I know of a few parents who would consider the improvements he has shown as nothing but miraculous. My husband and I accredit all of it to dietary restrictions, supplementation, and DAN! protocol. I hate to think of where we would be and the greater number of frustrations we would have if we had not at least given a try with this method of treatment.

Regarding ATEC Scores.......
I saved this part for last because I can go on and on and on all day long about how well I think Reiss has progressed and how much my husband and I attribute all of that progress to diet and supplements but it means nothing to most people if it's not coming from the mouth of a professional working in the field of autism.

ATEC stands for "Autism Treatment Evaluation Checklist." An ATEC score determines a child's autism severity level. The higher the score, the more severe the autism is in the child. The lower the score, the more mild the autism is in the child. An ATEC score of 180 is the maximum, with the higher scores indicating severe autism in the child. It is only at a score of less than 50 that it is determined the child may have some success of leading a semi-independent life as an adult. At a score of around 30, the chances that the child may grow up to lead an independent become better. Many times when the score drops below 20, the child loses his autism diagnosis and behaves like any typical child.

When we first began seeing a special doctor for Reiss's autism, which was around three months into using dietary intervention and beginning supplements, Reiss's ATEC score was in the mid-eighties - simply put, his autism was moderately severe. I have to wonder how much higher it was before we even began dietary restrictions because I know by three months in, he had already improved quite drastically. Now, close to one year after our first ATEC scoring and almost a year and a half into changing his diet and adding in many supplements, Reiss received an ATEC score of 37 just two weeks ago. If that's not testimony enough as to the success of dietary invention and vitamin supplementation in children with autism, I don't know what is!

I can't wait to get started with ABA therapy as well, as it is one of the only therapies known to have a proven success rate in helping children with autism. It is also the only therapy that is recommended and supported by the Surgeon General (not that that means anything to me, but I'm sure it may mean something to others who are more trusting of those who are in charge of medical policy in this country) in developing abilities in children with ASD.

Do I think our way is the only way? Of course not. All of these children with autism are so different. After all, what may work for one child with autism, may not work for another. But I will say this, every single book and recovery success story I have read in regards to healing children of autism has always involved dietary intervention and ABA therapy. I think we are close to recovery with dietary intervention. I want to be even closer....

Next step, ABA. And it starts next week.

Wednesday, February 17, 2010

Educational Apartheid aka special schools

I recently found this gem of an article among many others equally well written. I have asked for permission to copy same and gladly do so. In light of the lip service happening in Northern Ireland currently regarding 'inclusion' and Catriona's special education botch-up, this article permits the reader to see the real reason why we and the rest of the UK continue to fail our children who have labels and difficulties.

I will be writing about the segregation of our children in more detail later, but this article provides a primer. I don't know how long parents in Northern Ireland will accept the crumbs doled out to them by school boards regarding the education of their children with special needs but I do know that one fine day parents will wise up to the fact their kids have been shafted, their lives permanently and negatively affected.


The Struggle for Inclusive Education – A Struggle Against Educational Apartheid
by Joe Whittaker and John Kenworthy

An educational system that segregates disabled people is increasingly offensive to all learners. It damages relationships between disabled and non-disabled people. It is grossly ineffective and a waste of our most valuable resource – human beings!

We have to be more creative in the way we value and actively encourage difference. More direct action is required to end this educational apartheid.

"Change the label - say black instead of disabled and see if anybody would tolerate that kind of prejudice as it is against a disabled person."

Jim Hansen
Headteacher of a Special School in Canada

To exclude learners described as having Special Needs, from their mainstream local schools and colleges, is an injustice to ALL learners. Such an injustice demands that we look more creatively at the way we operate within educational systems as they now exist, and begin to change our legislation and our practices. We have to find different ways of hearing each other, we have to find different ways of seeing each other, we have to find different ways of learning together and more importantly we have to find different ways of being together. Simultaneously, we must start articulating a vision for the future which will influence the wider political structures and encourage the growth of local mainstream schools and colleges in which every learner belongs, in which every learner is actively encouraged to contribute, and in which those contributions are received and valued for their richness and diversity. Those who administer and those who teach have to recognise and value changes necessary for learners to make their personal and unique contributions, they have to learn that different contributions can be valued equally to the benefit of the whole school, and that difference should not be sacrificed at the altar of the artificial and often arbitrary standardisation of learners.

We have to plan now for the inclusion of every child, to be supported into their local mainstream school and college. We have to provide support that is valued and so effective it could be compared with the support provided to Head teachers or Principals, where such individuals can function within an organisation without necessarily having to write, without necessarily having to understand all that goes on around them, without necessarily having to move themselves around the building and without necessarily having to accept support systems which do not meet their particular requirements. In advocating such a direction we recognise that, at the present time, not all mainstream schools and colleges are organised in such a way as to ensure the smooth integration of previously excluded learners; not all mainstream schools and colleges appreciate the benefits of inclusion; not all mainstream school and colleges appreciate the contributions of their existing learners.

Mainstream educational systems must be improved and made more welcoming and offer more hospitality to ALL learners. However, regardless of the criticisms legitimately directed at the local and national organisation of some mainstream schools and colleges, their crucial advantage is that they have a place within a local community, such a presence can provide the scrutiny of ordinariness which can inhibit often bizarre and sometimes damaging practices we have adopted in segregated settings. Such a location also allows for links to a wider community with a potential social network which can enable the learner to translate her/his presence into meaningful relationships within and beyond the school gates - relationships which, arguably enable us to sustain and give life.

The presence of ALL learners is the first step in the eradication of irrational fears about difference - differences which are, at present, used as license to exclude learners from meaningful friendships and participation in their local communities.

Communities, like mainstream schools, are not always organised in ways that accommodate and value difference. Communities are not always friendly and welcoming. Communities do not always recognise the value of richness and diversity in relationships. We believe communities suffer as a result of such deprivations. It is our view that communities and schools will continue to be ineffective and dysfunctional without the presence and gifts of ALL learners. Integration is the first step to a very important process called inclusion.

"Integration is traditionally interpreted as the amount of time a learner spends in a situation with other learners who are not disabled – the deep meaning of integration is expressed in terms of "inclusion", "belonging", "unity". It is not a placement. It is a philosophy that says classrooms and communities are not complete unless all learners with all needs and gifts are Welcome".
Marsha Forest, Director
Centre for Integrated Education,
Toronto, Canada

Such a change within the educational system cannot be seen in isolation from the wider political activities. Indeed some might argue that it is directly a result of the highly competitive climate, created by current political ideologies, which makes the philosophy of inclusive education a practical impossibility.

"Despite the fact that we are now witnessing the most explicit political interference on the part of the government in the field of education, there is an orthodoxy abroad which views any reference to the question of politics as being biased, irrelevant and counter-productive. This is particularly applicable to those who would seek to raise the question of politics in relation to special educational policy or practice. To do so is to raise doubts about the nature of your commitment and whether you have the proper interests of individuals with learning difficulties in view.

Barton. Politics of Special Education.
1988; p.5-6. Falmer Press

In spite of recent government dictates which would support the view of Barton, we will argue that the effective inclusion of learners cannot and should not be a choice. It is necessary to right a national injustice. It is urgent that we work more creatively to overcome such injustices. Inclusive education highlights the potential value for a "whole school". We have to articulate a greater vision and look beyond the present fragile initiatives which come from shallow educational myopia.

We recognise the very powerful constraints and the conscious attempts to perpetuate a climate of moral intimidation where special education is concerned. To argue the inclusion of all learners who have been labelled as having special educational needs in any organised way, or to question the existing status quo in special schools, is to be "playing politics" with "vulnerable learners and their families". We see the segregation of a learner away from their local friends, away from their local community and schools, as a highly damaging political act. The practice is one that would appear to have the tacit or overt support of people across a wide political spectrum. It is striking that members of the political left, who quite correctly struggle to eradicate racism, who struggle to eradicate sexism and other barriers within our society, remain quiet at the forced segregation of disabled learners, away from their local schools away from their families and away from their communities. We should recognise that there is no consensus within any part of the political spectrum. There is a desperate need for more creative debate about how we are able to embrace diversity and rid ourselves of the scandal of exclusion of disabled learners from our schools and colleges.

We do not take a neutral position on inclusive education, this would be equivalent to taking a neutral position on racism and sexism. We believe that the present system of segregated special schools is a form of apartheid, that it is equally damaging to the community to separate learners with different learning needs as it is to reject the contributions of people simply because of the colour of their skin.

It is important to recognise the parallels with other forms of injustice and segregation. It took women 80 years of struggle to take their rightful place in University life, the reason for their initial exclusion was because it was "scientifically" proven that women's brains were smaller than the male. When women first entered University in the 1870's they had to have a chaperon, they were not allowed into the main body of the University, they were expected to wait in ante rooms during break times, they were also expected to attend courses to prepare them for the "Real" university life, these courses were called "Springboard Courses", it was no doubt assumed that full inclusion would be damaging to their moral as well as their educational development. (extracts from a feature on Radio 4 Women's Hour Programme 9.12.94.) We ask anyone working in the segregated sectors of education to consider the parallels with learners labelled as having learning disabilities. Surely we should not expect people to wait another 80 years to right a similar injustice?

It is not our intention to justify inclusion. The arguments for such a philosophy have been won. We no longer justify racism, but fight it. The same struggle should apply to segregation in education. We seek to highlight ways to promote inclusion and also highlight some of the barriers it will be necessary to challenge in order to succeed.

"Examples of successful integration of children with almost any given disability, irrespective of severity, can be found somewhere in the United Kingdom... The overwhelming conclusion is that where integration does not happen it is because people with power to make changes do not want children with disabilities in our schools."

Booth T. 1983.
In Fulcher Disabling Policies. 1989 p.164. Falmer Press.

We have to demonstrate an active commitment to ending segregated schools and segregated units in mainstream schools and colleges. The illogicality of the present ritual of exclusion is quite bizarre: We take young learners, we label them as having a wide range of "special needs" - the labels can be many and varied - with very little consensus as to the origins or meanings of the label, once the label has been successfully attached, it provides a license to have a learner removed from their local school and community. Having removed the person, we restrict their opportunities for developing friendships with others. We spend large sums of money transporting them on a daily basis, often in unsafe conditions (New Learning Together Vol III. J. Hall), to separate units outside their local community. Once we have excluded the learner we surround them with a multitude of "experts" who succeed in restricting their curricular activities by designing even more therapies and "special practices". Once we have collected sufficient numbers of children together, we make "statements" about them having the same "special needs".

It is rather ironic that after spending the whole of their school life in a segregated special school, the young learner is often presented with an "Independent Learners Programme" or "Preparation for Adult Life Programme", probably lasting for the final term of special school. Such programmes are expected to equip learners with the necessary skills to enable them to re-establish their place once more within the local community - the same community from which they were removed in the first instance. However, at this stage in their life, they have much more difficulty in establishing the network of relationships which were more likely to have developed as a result of their presence within their local community.

There is a great deal of anecdotal evidence which highlights the damage done to ALL when we segregate disabled children from their non disabled peers. We only have to ask the likely destination for children attending segregated schools, they tend to go to segregated college provision or segregated day centres, often living in segregated housing and segregated employment.

The year 2000 provides us with a benchmark by which time we should have planned the inclusion of ALL learners into their local mainstream schools colleges and universities. We cannot wait for legislation alone. The Warnock Report, which underpinned the 1981 Education Act, was hailed as the Integrationist Charter some fifteen years ago. This legislation has proved to be overly bureaucratic and unjust (CSIE Report 1992.) The 1993 Codes of Practice still fails to prevent the forced exclusion of disabled children from their local schools and communities.

We need a major shift in thinking about the value of schooling and the learning process. The present "special education system" is based upon a "deficiency model" or " medical model", which assumes that something is wrong with the individual. The special school and its staff are there to "put the wrong right", to "fix the child", to "get them ready", to go back into society. However, it is the deficiencies within the systems that fails to accommodate the diversity of abilities that we must address.

We should challenge the multitude of professionals who are in the lives of learners in segregated schools. We ask that we look at the systems in which they operate - systems which are damaging the lives of learners by barring their way to a rightful place within their local community and ask them to justify such injustice.

Since one form of segregation tends to lead to further segregated services, we challenge the local authorities to look seriously at their long term plan for the two-year-old child they will exclude and segregate tomorrow? What is that child's future within the present system?

We should encourage parents, and learners who have been negatively labelled, to question why the present segregated educational system exists, and to call for a more serious critique of the so called "special methods" and "specialisms" which exist in segregated special schools and units.

Jo is an eight-year-old child who has been labelled by the system as having severe and multiple learning disabilities. She is also blind. Her mother, Pat, struggled for over two years to get Jo into a mainstream primary school. It was a difficult struggle. The following, highlights some of the contrasts between the segregated special school and the mainstream primary.

At segregated school, Jo would come home with a dairy, once a week, on Friday. It didn't depend on much I had written the previous weekend, as the teacher usually wrote "everything is fine -too busy to write this week, I'll write more next week". That next week never came. I never knew what was going on. It was like suffering from amnesia for part of the week.

At mainstream school I get reports every day - all the little details helping me understand Jo's day. They don't come in the form of written statements, but the many comments, often unsolicited, come from the children. The class teacher and Jane, Jo's assistant, give me a brief but detailed report which is balanced and correct, which I can evaluate. It used to take Jo 1.25 hours to get to school using the Local Authority system. The transport was unsafe - children were expected to ride in their wheelchairs, even though they hadn't been tested for car seat safety standard, and the harness the authority used were just to keep children in their seats. I had to arrange for a special car seat myself, to be fitted. I compromised, and it was tied onto the seat with rope.

Now it takes just 10 minutes to get to her new school. Once we get to school, Jo's push-chair is often taken by one of the passing children who guides Jo safely into school. The person who pushes her never stops talking, the lollipop man always greets Jo., I follow on behind, chatting to other children or parents.

It came as a great shock to me that much of Jo's day in the special school was spent slumped over in a chair, dribbling, unable to breathe properly. Jo does not use speech and nobody spoke to her, hardly anyone touched her, kissed her, was loving towards her. The staff often seemed very busy, they often told me that I was being unrealistic to expect them to do the most simple things for Jo.

Jo would sit in a row with the other non-ambulant children in the playground, most of them were slumped over in their push-chairs and wheelchairs, none of them could speak. The ambulant children would be playing at the far side of the playground with the apparatus. This. I was told, kept Jo "safe".

Now at her real school, Jo sits with her head upright. The children are encouraged to talk to her and they do all the time. They read her stories, tell her jokes, sing to her. While they are doing this, they are touching her, wiping the dribble from her mouth, moving a hair from her eyes, making sure her waist strap is not too tight. They put cream on her face, they wash her hands before lunch. If they are writing, they place a pencil between her fingers. They laugh when she laughs and they get worried when she cries. At playtime, they play with her in the playground, pushing her around at various speeds, negotiating paths through football games.

Whilst at the segregated school Jo would have to eat her full lunch and have a drink in 20 minutes, even though at home it would usually take me at least 30-40 minutes to feed Jo and another 20-30 minutes to give her a drink. Jo had to sit in an upright chair, with a lap strap, a large wedge between her knees which was very difficult to clip into or out of place, her feet were strapped down and a large grey table was also fixed into position. It was thought that if Jo associated a good thing with sitting up, it would teach her to sit up. Jo has very little head control, so her head would be forced back, this would cause her mouth to open and food would be pushed in. Jo screamed a lot at special school.

By spending time with Jo, Jane has learned to feed Jo in a way that she enjoys. Jo is not strapped into her chair, she is not rushed, she has her friends around, she does not scream now. By watching Jo eat and watching Jane feed Jo, the other children have come to understand that Jo cannot feed herself or drink herself, but now her friends make sure she does not go hungry or thirsty.

When Jo went to the special school she was being taken out of her local community. Jo had no presence, people didn't know her, she certainly had no friends of her own age. Now, in her local school, she has many friends, not just school friends, but people of different ages. Brothers and sisters of Jo's classmates, friends of friends know of Jo.

Jo and I used to need organised respite care when she was in the special school. Neither of us liked it. The specialists had suggested it, therefore, it must be right. For so long, I believed that the special schools, with all the experts, knew what to do with Jo. I now know this is wrong.

We don't need respite care any more. Jo now stays at her friends houses, like any other child, she sleeps in the same bed as her friends. Her school friends stay the night at our house. Jo and her friends now go out together during weekends and holidays. She is invited to parties and out to play, and even though Jo does not use speech, her friends will telephone her. Jo knows she belongs.

Children with "special" labels are segregated everywhere. Jill and Bob Long, in Wichita, Kansas, have two children, Rachel and Dylan. They are an important part of an international network promoting inclusive education. Their experience with special school and services was very similar to the experience of Pat and Jo.

They gave her a label before we had given a name. However well-intentioned, whether by accident or design, the psychologists, social workers, therapists, special educators, who converged upon this label - for they failed to see the child - are in the business of building burdens. Families, friendship, community, inclusion. are about something far different. They are about retrieving dreams.

Our ten year old daughter, Rachel, spent the first three years of her life shuttling between therapy appointments, developmental evaluations, infant stimulation programmes, special education pre-schools, all of which served their function well: indoctrinating our family into a "special" world of isolation and rejection.

This process of indoctrination is about building walls. Walls between parent and child, walls between brother and sister, walls between classrooms, walls separating children one from the other. Invisible yet impenetrable walls.

When you live within these walls, you become powerless to see beyond them. Eventually, you grow accustomed to the sparseness and sterility of the "special" world, and forget what you knew of the real world, even fearing what exists beyond the walls. Those in the business of building burdens, would consider this outcome "successful indoctrination".

Fortunately, the walls of the "special" world created around us began to collapse of their own weight, began to crumble here and there. First, a bit of light from the real world leaked into our "special" fortress, illuminating the loneliness residing there. And then, a hand reached in and took our hands, and together we tore down the remaining walls. And in the rubble of it all, we began collecting, retrieving, pieces of our dream.

This is not to say, however, that there is no rejection in the real world. Rachel like all of us, and even more than most of us, is vulnerable to the threat of rejection. It is there when we are seated in an isolated corner of a restaurant. It is there when we're told "there are special recreational programmes for kids like her". It is there in human and charitable services campaigns of pity and exploitation. It is there in the perpetuation of a "special" and separate world. But it is not in the eyes, in the smiles, in the arms of her friends. It is not in the noisy lunchroom or spirited classroom of the ordinary school she attends.

Rachel loves and is loved. She belongs- not just to her family, but to her friends. She is included - not simply because she sits at a desk among her age peers, but because she is welcomed wholly and authentically within a caring and just community of learners. This was, and will always be, our dream. A simply dream. We found it, seven years ago, when we left behind the boundary of their walls.

We do not suggest that inclusive education is an easy option, or that it will be without struggle. We do not seek to avoid debate about the most effective strategies, nor do we suggest the inclusion of all learners into mainstream schools is the panacea for all our social, economic and political ills. We also recognise the resource issues that are often presented as the only barriers, "Of course I believe in full integration, if only I had the resources." This underpins a major assumption that we can't afford such a significant change. This assumption demands a greater degree of scrutiny. In 1992 Lancashire Education Authority spent almost 9 million pound, sending four hundred children out of the authority for special education, they spent almost 4 million pounds on daily taxi fares within the authority transporting children away from their local schools and communities. (Source Lancashire Local Education Authority 1992).

"There are those that argue that to allow all children to belong in the ordinary system is too expensive. We have found this not to be true. further, we'd suggest that the argument of financial resources is one based upon fear rather than any serious study of the issue. The cost of including a disabled learner is quite easily measurable, but the cost to the community of excluding the same learner from their peers in incalculable.
George Flynn. Director of Education.
Kitchener Waterloo, Canada

Each of us must choose our starting point when challenging existing practices of segregated education. We seek to highlight the deep injustice and the damage we have witnessed to individuals, schools and communities by the perpetuation of "special services". We believe there are no neutral bystanders, we must make no apologies for attempting to end the segregated world of "A special educational system".

Further information is available from:

Karen Barton (
Bolton Institute
Chadwick Street
Bolton, BL2 1JW

Bolton Data for Inclusion
The Action Research Centre for Inclusion
(Sponsored by: The Barrow Cadbury Trust)at
Bolton Institute of Higher Education.

Tuesday, February 16, 2010

Because ONE Day Would Just Be Too Much To Ask....

I admit it. I envy parents of typical children. I envy how seemingly easy it is for most of them to just pack up the kids, pack up the car, and go out for a day of fun. I envy how they can think nothing of going to a movie their child has wanted to see or a restaurant for a special family dinner or heck, even just to the post office to mail a package.

I feel like my family's life is all about just wanting ONE day of knowing what it's like to have typical children. One day where we don't have to deal with autism. One day where I can look back at the end of the day and think "Wow, this must be what it's like to be a regular family." But apparently, one day like that is just too much to ask because I'm still waiting for it.

Packing up the kids and packing up the car for a day of fun (and I use the term "fun" very loosely because most of these outings for us consist mainly of chaos control and tantrum prevention) does not happen very often for us. Doing so means packing up food that fits our specialized diet, making sure we have enough clothes changes should we have any "accidents" with a child who would probably be potty-trained by this age, if he was a neurotypical. Don't get me wrong...I know it's not his fault he has autism and I do know we are lucky that he is "mostly" potty-trained, considering I have friends whose children with autism are seven, eight, nine years old and older who still wear diapers.

My kids do not watch tv so going to a movie is out of the question. It's not that we do not allow tv viewing in our home, they simply have no interest and no attention span to sit still for watching tv. Ask a typical child who their favorite cartoon character is and immediately they will spout off some silly Disney or Nickelodeon character. Ask my children who their favorite cartoon characters are and they will stare blankly, not even knowing what you're talking about.

Going to a restaurant? Ha! First of all, my children can't eat most of what is served in restaurants and again, there's the won't-sit-still factor. We could take our own food but then we have to talk to the manager of the restaurant. Then there's dealing with Reiss who has that wonderful aspect of autism that involves rigidity to sameness (although he uses this selectively, as you'll read later about fits involving me and giving him what I think he wants at the time) gets bent out of shape if his plate looks any different than Daddy's plate, so James can't really eat the food offered in the restaurant either unless we sit there with the whole restaurant patronage looking at us while our child throws a fit.

Going to the post office isn't impossible but it's no walk in the park. Typically, I try to do this, when needed, when Reiss is in preschool. Until about two months ago, Reiss hadn't even been in a post office for almost two years. I simply didn't want to deal with it.

Am I complaining? Yes, actually, I am and I'm not afraid to admit it. I'm not blaming anyone or blaming my child but yes, I am complaining. I get tired of all the challenges of autism and how it invades every aspect of our entire lives. Although I don't really pay attention anymore to the stares out in public, I do still get tired of them.

I get tired of every single day, nearly every waking moment being a challenge.

I am tired of politicians in high places cutting funds for services (i.e respite care....can I get a "Hell, yeah!" from those of you who know what I'm talking about???) families like mine desperately need and then offloading billions to people who have entered my country illegally. Yeah, I said it!

I am tired of trying what all the behavior "experts" whose clients are parents of typical children say to do for behavior modification and it not working with my child. I wish all these "experts" would walk a day in my shoes and understand that their Supernanny methods, 1-2-3 Magic, positive reinforcement, giving choices, and just about everything else imaginable doesn't always work with children with autism the way they swear it does with typical children. While all those are good methods and we have had limited success with each of them, the fact still remains that children like mine are wired differently. It's not just me saying this - it truly is a fact. Even my child's own preschool teacher understands that none of these methods will work consistently and for very long with a child with autism. So why don't these professionals who are getting paid multiple times more than her seem to get that?

I get tired of being judged for everything - how I handle situations with my children, the way I feed them, the treatments I choose to work towards recovering my children from autism, and on and on and on. Just this morning I was speaking with another mom of two boys with autism who told me her extended family swears that her sons' improvements towards recovery have nothing to do with the biomedical treatments (that are, coincidentally, very similar to the ones we use) she has been doing, but rather, her sons are simply "outgrowing" their autism. I wasn't sure whether to laugh or cry because we - my husband and I - have both heard things along the same lines.....

"Oh, it looks like Reiss is really starting to outgrow this..."


"Just give it a few years and he'll outgrow it."

I am tired of nearly every encounter with my child being a struggle. Reiss may want his pancake cut up today and then throw a ten-minute tantrum tomorrow because I cut it up. This evening I may give him a fork at dinner and then have to listen to him have a meltdown about "Why'd ya' give me a fork, Mommy?" when just yesterday he wondered why I didn't give him a fork. It's like no matter what I do, I have to think about my actions before doing them and recall what it was that made Reiss happy in the same situation ten minutes ago or this morning or yesterday and then recreate whatever made him happy, only to be met with a tantrum because this time he wanted it differently......again. Ignorant people call this being bratty. In my children, it's autism.

Yes, I'm complaining. And yes, I hate autism. And yes, I hate living in a world that's not made for people like me or my children. And yes, I am having a bad day. Yes, I would love to be one of those mothers of children with autism who just puts on a happy face all the time but that's not me. And honestly, I have a feeling that it's not really how those moms feel either......they just save their unhappiness for more private moments. I don't know of a single mom who will say they love autism or the challenges it creates.

I'm done....that's all, folks. Back to the grind and tantrums and challenges and endless paperwork for services for my children and therapies and phone calls to therapists and finding a babysitter who truly "gets" it and finding that magic combo that will save me my sanity improve my child's well-being.....

Monday, February 15, 2010

I got a thing for Biltwell's...

In my garage sits about 18 helmets.  Some old, some new.  From full face to 3/4 lids, some legal and some that aren't supposed to be on my head while I ride.  Red ones, black ones and green ones.  I have lids that I haven't even worn and some that I wear daily.  I've come to admit that fact that I have an obsession with helmets.  I go on ebay and a search for helmets.  I google 'cool motorcycle helmets' daily. 

I have a collection of Fullmer's, Harley's, Arai's and my personal favorite - Biltwell.  When I google for 'cool motorcycle helmets' the helmet that comes up far more then any other is the Biltwell.  Over half of my helmets are Biltwells.  2 of these are custom painted by some talented artist's. If I could have it my way I would have most of my Bilt's done with some art on them.  Don't get me wrong - a stock Biltwell is a sick helmet on it's own, and I will have a bunch of them always stay that way. 

I've had 2 Biltwells done by Steve and Josh at 'Old School Helmets'.  They do an awesome job and I will continue to go to them to get work done.  I actually got a gas tank that I might contact them about...but that's for another time and place.  

I've taken some pic's from a few guys blogs/websites to share with you.  They are all very talented and I'm hoping that I will eventually get a lid done by each of them.  They all have their own style but they all have one thing in common - they all use the Biltwell helmet as their canvas...

These few Biltwells were done by Josh and Steve at 'Old School Helmets'

Here's a few more custom painted Biltwells from Blue Moon Kustoms:

More custom Biltwells done by Kustom Paint by Chris.