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   Friday, January 25, 2008  

Less of a Heel

My friend and her son took us up on our offer to go to the children's museum earlier this week.  The lowercase had a good time, my friend got out of the house and to be around other adults.

Their situation is considerably worse than I had thought.  By the time we left, I was holding back tears.  I don't know how she can deal with this.  I don't know how her husband can continue to deny that anything is wrong (he works for Mr. W and in conversation yesterday said that maybe he has a speech delay but that it just seems worse around us because the lowercase is such a talker).

At the entrance of the museum, there are huge salt water aquariums full of fish -- the lowercase says they are "Nemos and Dory's and Sharks and STARS!"  In the short time it took my friend to get his halter/leash thing out of the bag and untangled, he ran away three times.  Far away.  I told the lowercase to stay by my friend and chased her son down.

We went in to the first exhibit room and he almost immediately began to lose it.  He cried as we looked at the air cannon (really cool...there's a sparkly target near the ceiling that shimmers when it's hit).  The lowercase played and giggled trying to figure out how it worked.  We sat down at an activity table and her son was fine for a bit but got restless and wanted to run.  So we tried to go in this exhibit about perspective -- the floors are sharply slanted but the walls are straight.  It's difficult to stand up in and generally makes people laugh because of the tendency to stumble towards the back (lower) wall.  Her son went in of his own accord but then wanted to be DONE.  She cuddled him in her arms and rolled against the wall to calm him.  The lowercase then began dancing with the bigger kids at a dance exhibit (complete with dance dance revolution -- oh how I wanted to shove the 4 year olds off and dance like a fiend!)...her son cried again.  He did enjoy playing with the toy cars on a ramp but did not want to sit in the big cars and pretend to drive.

At that point, I suggested we go to one of the more quiet rooms.  He was alright in the train room, playing with the brio set.  And then he ran off so we all followed.  He went up a ramp and into the helicopter cockpit mock-up.  And fell apart because you can hear the sounds of the rotors and air traffic control on the radio.

The only place that he didn't get frustrated, upset, or run away was in a "sand" box (filled with some kind of small plastic beads instead of sand).  He made snow angels.  He found a sand mold in the shape of an airplane and pushed it around for a while.

But in all that, he didn't talk.  He didn't laugh.  He didn't really ever smile.  I can only imagine how frustrating it must be for my friend.  At one point there was a secret tunnel (in a display about mysteries in the reading section) and the kids and I entered it one way -- my friend wanted to go in from the other side and get some pictures of her boy.  Except that he started to crawl back out the way we had come in.  The lowercase was also with me and I didn't know quite what to do...at first I told her son to stop...and then remembered that he doesn't follow instructions.  And, I felt horrible doing this because he's a PERSON...but I grabbed the end of his leash (is that the right term?) and just held it so he couldn't run away regardless of his pulling as hard as he could against me.  All the while the lowercase is telling me something and pulling my other hand the other way.  And I think that's when my already broken heart just shattered.

We'd been there about an hour and a half, it was almost 11:30, so we decided to get some lunch and leave.  Her son lost it then when he grabbed food from her plate and put it in his mouth -- poor kid thought he was getting a pickle (he loves) but actually got a jalapeno (his first...he hates.  So much that it was evening before he would let food pass his lips again). 

And that was our day.  I think up to that point, I just saw his rough play and the inability to stop him from playing that way as a problem.  (And it is.  Don't get me wrong on that account -- it's something that bothers my son and that, when he plays rough with anyone, I remove him from the situation immediately)  We tend to do "adult" things when we go out together with the kids...meals out or walking through the mall with the boys in their strollers.  So all I saw was the rough play at our house and the extreme lack of talking (there are only occasional "baby" noises...the initial buh and muh type of vocalizing).  And I thought just those were bad and would take them a while to deal with.  But it is so much worse.

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  Comments about my post, "Less of a Heel":
It really does sound like autism (blah blah blah can't diagnose second hand/over the Internet, BUT) and that is sad and hard to deal with. HOWEVER, the sooner he starts getting services the better. I hope the EI folks get moving and he gets some therapy soon.
Wow, my heart is aching right along with you for your friend.

In the past few months, I had some minor concerns as D wasn't making any noises, or anything, but I tried to keep in mind that most kids will talk in their own timeframe. A few weeks ago, she finally started really vocalizing and it was a huge relief. I can only imagine the terror and worry that your friend is keeping inside.

We have some good friends whose son has some sensory issues, is unable to calm himself down, reacts to noises, etc. While I know Jen mentioned autism as a possibility, I perhaps wonder if it might be a sensory disorder, or one in combination with the other.

Either way, I'm sorry to hear of his (and her) troubles. May they get the help they need, sooner rather than later.

Kudos to you and your big boy too--I've no doubt that the time together meant a lot to your friend.
I work at a school for kids with learning disabilities, and one of my sons has sensory issues. I think your friend needs additional evaluations, either from EI or a private agency if EI is not coming through. EI sometimes uses a psych eval to determine PDD (whether he's on the spectrum). Aside from that, she should probably take him to her ped. and get a referral for a neurologist, who can also look into spectrum possibilities. Further, taking him to a developmental pediatrician specifically would help. They look for sensory disorders and pdd too.
From what you describe, it sounds like he's somewhere on the spectrum rather than an isolated sensory problem (because he does not seem to "connect"), but there are so, so many reasons that kids behave in these manners, and it's important to pin down the specifics without assuming too much. Also, like Jen said, the sooner the better has never been truer. With some conditions, therapies at this age actually change the *hardware* of the brain for the better! If there is one thing I'd tell your friend, it's to be pushy pushy pushy with EI and NOT take no for an answer, and to go outside of EI in the meantime if she has to.

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