Charlie Is Autistic

Ok, I’ve squashed the last bit of denial that was keeping me from seeing that Charlie is autistic and have finally resigned myself to it.  Honestly, not fully knowing it until now has been for a variety of reasons.

 A G.P. won’t diagnose autism – only refer them to a specialist.  And my G.P. referred Charlie to a specialist last year, but I could never get them to call me back.  Soon after that I moved, and since then I haven’t had insurance.

But he had had a screening with the Special Ed people in Redmond.  Guess what?  They won’t diagnose autism either.  The most they would say was that “there is something organic going on with him,” and gave me a book on sensory processing disorder.

Then I moved to Iowa and got in touch with special ed here.  They referred me to Early Childhood Special Education and Charlie was enrolled in special ed preschool.  I thought it was interesting that they would put him in with autistic children, but it seemed like a good fit, and they said they felt optimistic that they could work with him.

He has made some really excellent progress in the special ed presechool.  But he still has so many problems that I have been researching autism after some comments by the people at daycare.

 My findings showed me he had PDD-NOS – which is a diagnosis when a child has MOST of the symptoms of autism.  I was still holding out….

 The main symptom he did not seem to have is the “non social” symptom, where the child doesn’t make eye contact and doesn’t want to be held and prefers to play alone.  Well, it turns out that is criteria for younger children.  And he did have those symptoms at the appropriate age.  Very limited eye contact and only would only tolerate being held if extremely tired or sick.  Even when he got hurt, what he mainly wanted was his Clifford (object over person).

He has all the other symptoms, and I have pictures and or video of all of them.  I just thought they were his own little unique quirks.  Just Charlie being Charlie.  But thanks to a (leading) question by Charlie’s teacher about whether his eye contact was improved from toddler-hood to now and whether he used to like to be held, I now have my answer.

Lately I’ve been searching on autism in youtube after seeing a picture in wikipedia of a child who had lined up all of his toys in a straight line and then fallen fast asleep next to them.  That was my kiddo (figuratively-speaking).  That was not a quirk as I had thought – that was a symptom.

So was the hand-flapping, spinning (without getting dizzy), developmental delays, language delays, “zoning out” with glassy eyes (which I have taken several pictures of because I thought it was so cute he had such a serious expression on his face), severe tantrums through age 4 and beyond, inability to pedal a tricycle (classic symptom), sensory processing disorder (what I thought was a diagnosis was actually a symptom within the syndrome), fascination with doors, light switches, ceiling fans (extreme fascination), need for routine, repetition, echolalia in speech (repeating what you say or saying what he thinks you will say and seeing speech as a ritual and not as communication), delay in potty training (we’re still working on it at age 5), and etc. and on.  He’s got them all.

It’s eerie to search on autism symptoms on you tube and basically see my child with different faces – meaning, children doing exactly what Charlie did.  And to see that it’s a symptom and not a quirk.  There is also something strangely calming about it.  For years I’ve known that something wasn’t right.  At least now I know what it is and that he’s not alone.

The only thing I don’t have right now is an official diagnosis, but that will come as soon as I get insurance again (very soon), and get him to a specialist.  As recently as a couple of weeks ago I was still in denial, and I wrote an article for Associated Content about his PDD-NOS.  I even made a post last week or so and referred to his problem as ADHD.  Well, it ain’t….

It’s autism.  And it scares me.  I’ve seen children with autism who are definitely much worse off than Charlie.  I’ve also seen children with autism who are definitely much better off than Charlie.  I’ve also seen normal children his age, and my heart drops into my feet when I realize that he is missing a normal childhood.

And although I wouldn’t trade him for anything, and everything he is makes him so special and unique, I really fear for his future.  Not only will he miss a normal adolescence and adulthood, it’s not known if he will ever achieve any sort of independence.

And I am an older parent and will definitely not be around forever.  Pretty much every hope and dream I had in life beyond having children is gone (don’t read bitterness into that – it’s a whole other subject) and has been replaced with hopes and dreams for Charlie to reach adulthood and be able to exist with at least a bare minimum of independence and hopefully a trust fund to carry him.  And the sincere and desperate wish that those who care for him after I am gone are caring, honest and have his best interests at heart.  Mean, uncaring, opportunistic people take advantage of many of us fully able-minded people.  I fear Charlie’s running into one of these as an adult without me there to protect him.  But then, that is wayyyyyy into the future.  (But that is pretty much my worst fear and what haunts me at night.)

So, my beautiful Sweetie Pumpkin is not what I thought he would be.  He’s not even who I thought he was a few weeks ago.  But he is very special (and I don’t mean that in a “special ed” kind of way), and he is very beautiful, and he is my son.  Period.

Here is a picture of Charlie with the “garden” he created out of refrigerator magnets. If you look closely, you can see a house (an “a” is its roof), the sun, some flowers with other magnets coming away from the middle as the petals, and the ground with tree trunks and such on it. He was EXTREMELY proud of this. No one gave him the idea to do this – he just did it out of the blue one day: