Friday, August 29, 2014

"Is There Anyone Out There"



I had a request to write on a specific subject.  I actually think it is a great idea for a blog.  I have been turning the idea over in my head for quite some time now, wondering how to approach this particular subject.  I could easily see myself going off on so many tangents, that it turns into a novel, rather than a blog.  The idea of breaking it up has occurred to me, but if I do that, do I write the whole thing first? or just fly by the seat of my pants and plunge into it, with no end in sight?  One part of me wants to tell it in a bunch of stories, but then it kind of loses the continuity.  By now most of you are probably saying just shut up, and write it.  Okay, “and here we go…”

Holden was born on May the 3rd, 2005.  From the beginning everything about Holden was easier than Zane.  His birth seemed much more routine than Zanes had by far.  He was a lot quieter baby than Zane was.  Zane had Pyloric Stenosis as a baby, which basically means he barfs up everything he eats, until he gets the condition fixed.  As new parents, people didn’t really believe us, that anything was wrong with Zane.  People would say, “All babies spit up”.  Okay, fair enough, but Zane was barfing, puking, up-chucking, throwing-up, going into turbo reverse, selling Buicks to a guy named Ralph, NOT spitting up.  Eventually people started to witness Zane the amazing human regurgitation machine in action, and these same people who were so quick to point out that all kids spit up, where now telling us to let them know if his head spun all the way around.  After some trials, and miss diagnoses, Zane was finally properly diagnosed, and had surgery at the ripe old age of 6 weeks old.  Needless to say, Zane was not very happy pre-surgery, and his first few weeks of life were quite a test for his mother and I.  

So along comes this second baby, four years later (gee I wonder why we waited so long).  He slept better, ate great, fussed WAY less.  We thought “wow, this is what it’s like to have a normal kid”.  I guess I don’t need to explain just how wrong we were.  Holden continued to progress, and make some great milestones in terms of his physical ability.  He crawled early, was standing early, and was walking by 10 months.  We were quite pleased with his progress.  There began to be some other signs though.  He did not coo as much as Zane had. When crawling around on the floor, he would pick things up, and stare at them for the longest time, where Zane would just stuff it in his mouth and move on.  I really thought we should have named Zane Hoover, instead of Zane. Also Holden would take off his diaper, as soon as he wet it.  We thought, “wow, he is going to be so easy to potty train.”  As it turns out, he did potty train earlier and easier than Zane, but he would also use his excrement as bathroom chalk.  I began to feel like there was a disconnect with him too.  I would play games like “where is daddies nose?” with him, with little result. He wouldn’t respond to his name, or make much eye contact.  This was at about one years old.  His mother and I had both worked with developmentally disabled kids, his mother WAY more than myself.  Autism was a well known term in our house.  I began to ask his mom if she thought he might be on the spectrum.  She said I was comparing him to Zane too much, and that kids progress at different speeds.  I didn’t exactly disagree with this concept, but it was more than developement.  It was a lack of connection to those around him.  He also wasn’t developing language.  Again, his mom explained that second children often speak later than the first, because the first won’t shut up long enough for the second to say anything.  Zane certainly fit this profile well! Still, I couldn’t get rid of the feeling that there was more to it.  

Holden learned to potty train at two years old, but still language was almost non-existent.  He had freakish upper body strength even as a baby.  He would push off with his arms while you were holding him, and you literally had to catch him, or he would push himself right off of you.  As a two year old he could pull himself up onto a counters and furniture, with just his arms.  By three he was able to climb a six foot chain link fence into the pool area, where he would proceed to jump in the pool fully clothed. By four he was making it over a regular six foot fence,  yet still language was nill.  By this time his mother was also in agreement that something was up.  We enrolled him in preschool at three, and discovered that he was galaxies behind his peers.  The preschool said his language (and inability to focus on anything) would prohibit him from being able to remain in that class, and recommended first five to us.  We took him to first five, and they initially thought he was just speech delayed, but after a few sessions, and one frazzled speech teacher, it was clear that that was not the problem.  This began the battery of tests, and interviews, and assessments, by every specialist you can think of, that ended with Regional Center diagnosing him with autism at four years old.

The whole process of having your child assessed is such a difficult one.  As parents with kids on the spectrum find, in the beginning, you want to believe with all of your heart, that they will find he is really not that far behind, and everything will be fine.  A few years into being a parent with a child on the spectrum, you want him to perform horribly on assessments, because that means more services.  I have written about this before, and could probably drag you all through those memories, but I think we accomplished what was asked of me, in terms of writing on a specific subject.  I will say this, if you think your child might be on the spectrum, even if it’s just a gut instinct, run with it.  The earlier you discover there is a problem, the more that can be done to help EVERYBODY involved.  If you have no one to go to, contact me!  You can contact me through my non-profit at www.artistsforautismawarness.com, I will personally respond to you, and answer your questions.  Ask anybody who knows me, I will write you, text you, call you, whatever you want!  No parent should feel alone in this!


I Have to make a quick note. The picture below is one of my all time favorite pictures of Holden and me. I use it every chance I can. I figured since this blog is about Holden's first few years, this picture works!


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