My Autism Insights

I rarely post more than once a day, but I just came across this ABC News story about very happy couple, both with autism, and I couldn’t pass up sharing it.

Video

Enjoy!

Mia Hysteria shares her inspirational, humorous and sometimes heart wrenching journey of raising 3 young children, one with special needs, while managing a life of chaos, in her blog: General Hysteria .  Mia has been blogging on General Hysteria since September 5, 2008 about her son, Ben (1), her daughter, Violet (2) and her oldest son, Alex (6).  Alex has cerebral palsy, autism, sensory processing disorder, developmental delays, epilepsy, and ADHD.  Mia is a mother, wife, blogger, and practicing writer.  Candid about her current and pre-insanity-brought-about-by-children life experiences, Mia’s writings will leave you shocked, laughing, and reminiscing. On a laptop, in a cul-de-sac, somewhere in Colorado, she is single-handedly attempting to share her stories, thoughts, frustrations and elations so that no person feels isolated, forgotten or unworthy of their own journey.

He is my first born.  I can still recall doing as many things as possible with him.  I would cut open yard size garbage bags, carefully taping them to the floor before inviting him to sling paint all around.  He wasn’t as interested.  Or placing him with me in the kitchen while I pureed his food rather than buying jar food, talking to him all the while – giving him words to all the crazy things his mom was doing, thinking that would all make me a better mom and him the best raised little man in the world.  I’m far from those ideas these days.

Though I gave up the pureeing of food, I have not wanted to stop the art projects, but those have been hard for us.  The projects that make you feel as though you’re showing your delicately developing child all that the world has to offer; giving your child things to feel, experiment with, explore.  For various reasons, they’ve never worked out for us.  An unfortunate admission from me is years after his diagnosis, and too many times of these best of intentioned projects ending in turmoil or not beginning at all, I threw up my hands and stepped away from showing him this world.  I was wrong.

Today, I am back to wanting to show my Angel more of his world through art projects.  Much of this has come from a better understanding of how his mind works, what his limits are, what he is capable of and what he likes.  Alex has cerebral palsy, autistic features, developmental delays, and more; fun activities can take some planning.  Alex doesn’t have a huge attention span, he can paint with assistance, and patience is a consideration.  This, along with a little sister who interjects herself wherever she deems she’s needed, is perfect:

You’ve all seen these, right?  If you haven’t, go check the dollar bin areas at your local Michael’s Craft Store.  This is Alex’s favorite project. The first hurdle we had to get over, which took just a few minutes…the plane is not in one piece.  We had to work through this one time and now he is versed on what to expect.   The fun begins.The way we work it is to take the pieces out of the bag and then choose our paints.  I encourage him to pick more than one shade of blue (his favorite) and if he’s feeling real good about the project, more colors will be chosen.  We distribute the pieces to the appropriate people (remember his sister is ‘helping’).  Alex always gets the wings.  We paint.

Why this works so great for him is that by the time we need to think about letting it dry so we can paint the reverse side, his attention has been caught by something else…or dinner is ready, or my one year old is pulling at my leg…we can leave the project for later.

Usually, we paint again the next day to its finish.  I glue it at night while he sleeps and in the morning, he’s greeted with a new present, yet another airplane, that he has pride in knowing he made (with his sister’s help).  It’s special for him.  It’s what he loves.  It’s blue.  I showed him another piece of this world.  And he molded this world to fit into his.

What about you?  Are you able to do project activities?  Are there projects that work for you?

  image from Wikimedia Commons

I will preface this post by making it very clear that I do not in any way think that my son’s Asperger’s has anything to do with mercury.  So let’s be clear that I do not generally jump up and down about mercury exposure.  But today I read a blog post by High Quality Mothering about an article from yesterday’s Washington Post online about two studies that found mercury in high fructose corn syrup, which is the sweetener of choice in (disturbingly) many foods.

I had heard something about traces of mercury in HFCS a while back but could never find significant information to back it up.  Here’s what creeps me out: it’s not that there has been mercury found in a rather high number of foods containing HFCS; it’s when you take what could be a tiny amount and consider just how much HFCS gets consumed on a daily basis…that’s an awful lot of badness in food!  Isn’t the corn syrup bad enough?  I know that trace amounts of mercury have been said to be innocuous - it occurs in nature after all.  Still, if I’ve been told I have to clear a room for 15 minutes if a tiny bit of this stuff gets into the air in my house, I certainly don’t want to eat it!

I knew there was a good reason we started removing high fructose corn syrup from our diet.  This just makes me feel better about it.

What do you think: is the food industry poisoning us, or is this an over-reaction?

Today I am particularly thankful.  It’s a frosty 12 degrees with a windchill of -6.  I despise the cold above all other things, so why am I so grateful today?

1. For starters, the cold and light snow we got last night meant a 2 hour school delay this morning.  Usually, that would make me groan, but not today!  Delay meant that  a) I had to cancel my client and b)  no bus stop.  Both of which translate to me not having to be out in the cold.  I did have to clean & move my car, but it was a small price to pay in order to be able to stay home near a blazing fire.

2. I am thankful that our pellet stove is (knock on wood) in good working order today!  It’s a pain to have to clean every morning, but it is rather toasty in here, and for only the same cost as it would be to run a fan.  Gus loves it too, and he’s gotten pretty good about being near it for warmth without being unsafe.

3. On a more serious note, I am thankful that Gus has never been in a situation where anyone’s felt the need to physically restrain him.  I came across the story of  8 year old Evelyn Towry yesterday, and it tied my stomach in knots for the rest of the night.  There is something seriously wrong when a group of adults can’t think of any other means of handling a situation with a child that young - a child with known disabilities - that don’t involve physically restraining the child.  Clearly the school is in need of some education.  Best wishes to Evelyn and her family.

Chime in and share what you’re thankful for today.

I’m feeling particularly thankful today after reading some distressing things…

First, I’m thankful to be married to a Social Worker who has a clear understanding of the DSM-IV, which is the manual of diagnostic criteria for the mental-health field.   It’s hard enough to explain what it is, let alone follow all the complicated requirements for any diagnosis.

I am thankful for not only the brief time I spent as a teache, but for the environment I taught in.  I worked with incarcerated youth, ages 12-17, and most of them were eitehr functunally illiterate or had learning disabilities.  It made the job challenging, but it also taught me how to teach outside the box.  As I struggle to advocate for Gus, it really comes in handy being able to understand the different challenges facing the teacher, and it is useful to be able to come up with little tricks to help him and those who are working with him.

Finally, and this is the really important one, I am thankful that I am fortunate enough to have both my children living with me, safe and sound.  Niksmom posted about Frankie Macias, who has been institutionalized since 1994 - on a temporary placement.  Frankie has suffered horrible abuses, has been denied access to his family, and even though a community-based placement has finally been obtained for him, the Department for Developmental Disabilitiesin New Jersey has refused to release him!

So, please sign the petition asking Governor Corzine to have Franie released so that he might have a chance at healing and living his life.

Have a great night, and please share your gratitude in a comment.

This will be a non-autism related post…sort of.  I’ve just spent the evening watching the first African-American president become elected.  And I feel hopeful.  I feel hopeful that my bi-racial children will now grow up among a different world view, that there is now an image of success at a whole different level than I’d ever imagined.  I feel hopeful that no matter what my son’s differences, it has been proven in a very visceral way for me that the sky is truly the limit for him, for my daughter, for generations to come.

I’m rambling a little because I’m, honestly, floored.   No matter what happens now, beyond political alliance or color of skin, the majority of the people of this nation have stood up and looked beyond difference toward our best hope to achieve the common good.

So in that way, maybe this is a post about autism, about succeeding regardless of difference.  Maybe it is a post about possibility, and vision, and hope.  Yes, we can.  I will look at my son with the renewed belief that yes, he can too.

Ha!  They waited long enough to send it!

Maybe I should just rant about how the clocks changing has really upset our lives instead.  I woke up at 3:45 this morning and had to force myself to stay in bed for at least an hour.  The kids were up by 5.  It’s a very tense day here today.  My husband took today and tomorrow off all because of this historic election, which quite frankly has me nervous as heck.  I think Gus has picked up on this because he is completely off the wall this morning!

We went early to our polling place and did not encounter long lines.  Gus came into the booth with me, turned the little levers, and then pulled the big red lever to cast our vote.  I missed one little initiative that was hiding in the top corner of the ballot, but I didn’t mention this to Gus because he’d just get stressed over it.

The kids did very well in not making loud proclamations about the candidates, and Gus didn’t mention anything about how, “Alaska is going to become independent!” because he heard my husband and I joking that Sarah Palin isn’t setting herself up to run in 2012, but that she was planning on becoming the first president of an independent Alaska.  We always get busted when we don’t watch what we say around this boy.

I was going to post about voting rights for persons under guardianship or with ‘intellectual disabilities,’ but I honestly am too wired to say much on the subject that would be coherent.   I did find it disturbing that there are still 8 states that have provisions to deny people the right to vote based on a disability, and there are a couple who have some really deplorable language on the books at that.  The Americans with Disabilities Act is supposed to protect voting rights for persons with disabilities.  I never thought much about it before now, I mean, Gus is only 7, but I think this is something I’ll be looking at a little more closely and hopefully I’ll have something coherent to say about it soon.

We had a beautiful day for Gus’s soccer game yesterday and got a bit of a surprise.  A boy who he had been on the bus with two years ago was at the field watching his sister play.  The boy, T., was always a really sweet kid and so nice to Gus.  He’s in the 8th grade now and in “regular school,” which he was very proud to tell me.  It was great to see him!  T. sat at the sidelines with me watching the game, talking my ear off about any and everything, and volunteering to help out on the field if needed.  One of the players got a little tired out and lay down in the middle of the field.  T. was right there (he knew the girl) coaxing her back to her mom.  Really an awesome young man.

I’m having a bit of a dilemma.  T. does babysitting, and I will be needing one soon.  My biggest issue is that I have a general unease with leaving my kids with a) teenagers and b) males - any males (strictly my own issue and not indicative of any inherent inability of men to care for children) .  While my kids are generally good, especially for other people, you just never know when there will be an ‘issue’ and I always worry that one will crop up and the sitter won’t be able to handle it.  Now, one thing in T’s favor is that since he’s an Aspie and also knows Gus pretty well, he’d have a better insight into how to calm Gus if he got upset about something.  My concern would be pretty much the same as with any of the other teens I’ve considered hiring - attention and ability to control two rambunctious kids.  Also, T. doesn’t live very close, so having him babysit at night may be difficult.

On a completely unrelated note, someone forgot to give Gus the time-change memo.  He was up at 4, which was sort of 5, too early at any rate.  He’s back to the early rising and I’m thinking of trying melatonin to help with sleep, at least until we can get him into a pattern of sleeping a little later.

If you have any thoughts on either the babysitting issue or the melatonin, I’d love some input! Have a great Sunday!

Or lack of policy, more accurately.

Governor Palin gave a speech in Pittsburgh today.  I’m scouring the Internet, but so far have been unable to find video of the speech, but I have found some information , including a transcript of the speech. After reading it, I still don’t see anything new or particularly substantial about her plans, and I find some of her words contradictory to her past actions.

She did mention fully funding IDEA - great, only 11 days before the election and about a year after Senator Obama mentioned his intention to do so.  She talks about school choice for students with special needs, but some states already provide at least some level of choice.  Expanding that would certainly be a nice idea, but with the spending freeze that Senator McCain called for during the debates, where is the funding coming from?  Governor Palin claims that by reallocating funds already in the budget it can be done, but she neglects to give concrete information as to how.

In a Chicago Tribune article, quoted at Autismvox , her plans apparently include boosting early childhood funding until age 3, but what is supposed to happen to those children after age 3?

A couple of other issues are distressing.  First, she claimed that the special education budget in Alaska would have been tripled by 2011, but a big chunk of that funding increase is for a program called the Alaska Youth Challenge Academy, a boot camp for dropouts with behavioral issues.  Autism, Down’s Syndrome, Cerebral Palsy, ADHD…none of these, nor a host of other special needs, are ‘behavioral issues,’ so where is the funding for those students who wouldn’t be served by being in a boot camp?  When given the opportunity to advocate for individuals with special needs in Colorado, she opposed an amendment that would raise funds for those waiting for services - about 12000 people.

Governor Palin got in a dig at the Obama campaign, and her digs have been nothing but misrepresentations and double standards up to this point, by saying that his tax plan would tax trusts that parents establish for their special needs children, which is inaccurate.  As one commenter on the CBS News blog said:

“Sure, any special needs individual who is lucky enough to have a NET EARNING of $250000 per year in INTEREST FROM TRUST FUND will be affected a bit. We are talking about trust funds well above $5.000000 here. How many kids will be affected, I wonder? I”d love to see statistics on that.

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Posted by odnarusalka”Governor Palin fails to mention that the McCain-Palin health plan would allow insurers to deny coverage to those with pre-existing conditions.  Finally, Governor Palin spoke about the fact that children with disabilites grow up and that there needs to be support for them as adults as well.  Yet, she has yet to act on Maria Shriver’s call to Governors to employ disabled adults, and John McCain opposed the Community Choice Act, as mentioned in Becky Blitch’s blog.  So once again, the sound bites sound interesting but there doesn’t seem like there is much in the way of specifics, action, accuracy or truth where the Governor is concerned.  If this was her Hail Mary play, she seems to have just missed the goal.

As I was all geared up to start ranting about Dennis Leary’s disgusting comments in his new book, Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid, my husband made a point that completely defused me, “Why is anyone surprised?  He’s a twit.  He’s always been a twit.”

Well…yeah.  Can’t argue with that logic.   The offensive material:

“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

Some links to a few of my favorite blogs discussing the matter:

Autismvox , A Life Less Ordinary , Memoirs of a Chaotic Mommy , and Marla Baltes.

In fairness, here is a link to E!Online in which Leary feebly attempts to defend his words.

You know, I had gained a little respect for Leary when I watched a few episodes of Rescue Me.  I thought that maybe he’d grown up.  Apparently not - he still goes for the cheap shot and the easy target.  I may not be surprised, but I am still offended that he would call so many moms “inattentive” who are really giving their all to help their children, and that he would refer to so many awesome kids as “stupid.lazy or both,” who have to work infinitely harder to get through a day than their typically developed peers.  I mean really, how much more attentive could we be?  If I was any more attentive to Gus, the poor kid would get a hernia from lugging me around like a backpack.

I think this moron got his C’s mixed up.  A comedian is someone who makes people laugh with things that are actually funny.  A coward is a loser who would take a cheap shot at someone, turn tail, and then hide.  Don’t hide behind your lame excuses and justifications, dude.  Just admit that you were wrong, recognize that you weren’t funny, and let’s all move on - without my, or probably any autistic child’s parent’s, money in your pocket.  I prefer not to deal with people who “suck” as you so clearly do.