Worried.

I’m feeling so very low right now.
I realize that so much of my personal feelings of satisfaction & contentment come from when Thomas is doing well. This could be dangerous, I suppose. Probably is. But when he’s our only child, and as I’ve said to people lately, we’ve put all our eggs in one basket there, it’s difficult not to feel terrific when he’s doing well, and feeling like shit when he’s not.
He’s started playing with his feces. Okay, his shit. There. I said it. It’s so upsetting I can hardly think clearly.
He’s been doing so well with potty training – even was dry for several weeks overnight. He was sleeping in underwear and was dry in the morning. But that ended over the Christmas break, and I’m hoping that once we’re truly back in the swing of a routine, it will go back to the way it was. But he’s even peeing through the overnight diaper, meaning that we have to wash his sheets and underwear & jammies almost every night. He even had a peeing accident last night while watching a video. Add on to this the new totally disgusting and disturbing activity of playing w/ the toilet water and poop, and I’m in despair. We think what he does is put one of his fingers up his anus when he’s in the bathroom by himself and pooping, and then smearing it on his shirt or legs. I even found it in his hair once.
So the obvious remedy is not to leave him alone in the bathroom. This is easier said than done, and so disappointing and frustrating since he’s been poop-trained for almost two years now. Back to endless time sitting in the bathroom with him.
Plus, it’s just disturbing, this new activity. It shows such a lack of…I don’t even know how to put it. People who care about wanting to be liked do not spread shit on themselves. Mental disturbance? Cognitive dysfunction? Psychosis? I could just cry thinking about it. What’s happening? He never did this as a small child – never. And I was so glad that he didn’t. Why now? What triggered this? Is it just that it feels cool to stick your finger up there? And he can hardly help himself around water – he could just be playing in the toilet water because he likes playing in any manner of water, but EEEWW. YUCK.
My poor boy. Now what? Are we entering into a very dark time for him? Do other more serious diagnoses or problems face us?

Good night, Goodnights?

I don’t want to jinx anything, but…it in the past two weeks (maybe more) T has had only one accident overnight. Other than that one time, he has been dry every morning. He's even been sleeping in underwear.

Could it be?

Are our days of buying diapers over?

Got the vaccine

Our county has decided to use their H1N1 vaccine supply by inocculating all the school children at their schools (whose parents have signed a release form, of course). I took them up on their offer, and T got the nasal flu mist today. He is in good spirits tonight, happy & a little tired, but earlier this afternoon, he quickly spiked a temperature of 100 degrees - but then it came down to normal w/in 90 minutes. They didn't even call me to come get him because it came & went so quickly. I'm feeling very relieved, but will still watch carefully for the next few days.

I told Rob last night that I felt like, with this decision, I was stepping off a path we've been on for 4 years and headed down a new path. Because of that, I have been feeling anxious about it. But I also have calmed myself by remembering that so much information has come to me this year about vaccines and their safety (or at least the other side of the story)...I have to believe that there was a reason for that shift, and maybe it was to prepare me to help make this decision to get the H1N1 vaccine for him. And relying on T as the best data & research we've got (and he's never reacted badly to any vaccine), we did it.

Now we wait for any reaction.

I think it is going to be fine.

H1N1 vaccine decision

We’re going to get T that vaccination. I’ve struggled with this decision for awhile, but Rob & I are in agreement. The final clincher came to me when I thought back on this year…attending the conference where I head Paul Offit speak, doing research on both the pros and cons of vaccinations, weighing our options and looking back at T’s experience w/ getting his vaccinations…and I thought that perhaps this is why all this pro-vaccine information came into my life this year. I was being prepared to make this decision. T has never had an adverse reaction to vaccines. He is fully vaccinated. He didn’t regress. And I’ve heard enough about the high-risk populations – he’s in two: 1) he’s under age 24 and 2) he is developmentally delayed and might have some neurological challenges. And I’ve also heard enough about dead kids.

I can deal with side effects. Hell, we’re already dealing w/ autism, if that’s what everyone’s scared of. But I don’t want to deal with dead.

But here’s the caveat: if at all possible, I don’t want him getting the vaccine with thimerosol. Research has exonerated this preservative, but I’m still not jumping up & down with glee over the prospect of injecting him with it. I was able to find a thimerosol-free injection for his seasonal flu shot, now I just need to track one down for H1N1. Wish me luck and good timing – it will probably have to be a “right place at the right time” sort of situation.

Now we just need to find a vaccine. Our county has held a few huge clinics – thousands of people lined up for hours – and I have not taken him to any of those. Yeah, standing line for hours with a child who has trouble holding still and exposing ourselves to all the germs that those thousands of people surely would bring…and then there would be no guarantee that he’d get a thimerosol-free version…nope…not signing up for that. So I’m praying for a calm, stress-free opportunity to get him either the nasal spray version or the single-dose injection.

Fingers crossed.

Birthday Party fun

T was invited to a friend's birthday party this past weekend. These invites are few and far between in our life, so I was pleased to take him…although I experienced a little trepidation because they are usually crowded, over stimulating experiences for him. Sometimes I wonder if it really is fun for him to go or if it is just something that I want for him. This birthday party was different.

This child's family had rented an indoor sport facility that had 3 large bounce houses ready to go. It combined "typpies" (typically developing children) and some fellow classmates from the Verbal Behavior clinic. The party was two hours long and included no official organized events - just playing in the bounce houses and eating pizza & cupcakes. T LOVES bounce houses of all sorts, and this day he even climbed in and around a big inflatable that had hoops to crawl through, poles to dodge and a slide to climb up and slide down. He had a terrific time on this, and even giggled when a little girl saw that he was taking his time on the top of the slide and started playfully pulling his leg to get him to come down. Let me emphasize that…laughing
with a peer. He had a huge smile on his face as he came sliding down.

Some of the therapists from the Verbal Behavior clinic also came. It was so wonderful to see one particular former therapist of T's play with him on her own time (once again, I am so tremendously moved and thankful for these incredible people in his life). When it was time for pizza, I went into my usual routine of getting T's food for him and having him sit with me. This therapist joined us at the table just in time for me to see that all the other kids were sitting together at little tables in their own little kids' area. So I asked T: "Do you want to eat here, or with the other kids?" He replied: "I want kids."

He wanted kids!!!! He chose to eat with other kids!!!! So he did. Word spread quickly among the therapists that he had chosen to eat with the other kids, and while they all recognized that this was tremendously cool, they confessed they were a little bummed that they weren't cool enough to hang out with. I grinned in acknowledgement, knowing that if we all do our jobs correctly, he will eventually "break our hearts" by not needing us anymore. And that's the goal – that's what we're striving for.

My little guy turns 8 in two days. Time is going so quickly. I can honestly say that I'm enjoying this time in our lives together so much right now…I don't want it to change, I want him to stay little and happy and loving his mommy…and yet again, I know that if I do my job correctly, he won't need me as much and I'll need to take my joy by watching him soar. And that is my prayer.

After lunch, he went back to playing. He grabbed a basketball, dribbled the ball with two hands while walking, and tried shooting some baskets into a regulation basketball hoop.

I believe he'll make those shots someday.

 

 

Our music (little) man

He's playing piano again! A few years ago he stunned us all by picking out the tunes of "Twinkle, Twinkle Little Star", "Mary had a little Lamb" and even "Happy Birthday" on the piano. So, playing it cool, we quickly got him piano lessons, and he promptly ignored the piano for at least 18 months. So much for finding his bliss for him. I got a view of how easy it would be to become Helicopter Parents, and just how he'd respond to that.

But he's now playing again and we've learned our lesson. This time we truly are playing it cool and not even going in the room when he plays. And what are we hearing? The warm-ups I teach/taught my voice students; major chords in several different keys, sometimes with both hands contributing; and most stunningly: "Sunrise, Sunset" from Fiddler on the Roof (which I am currently teaching to a new voice student). Not only is he playing, but occasionally he will SING ALONG.

It's about the most miraculous thing I've ever heard. I just vibrate with happiness and joy when I hear him sing. And on top of all this, he's singing with my voice student as well! Good thing it's one of his therapists, who takes great delight and joy in the unexpected duet.

Miracle at the library

I took T to the library Friday afternoon. He enjoys going because he can sit at one of several children's computer stations and watch the screen do cool things. Several times I have attempted to show T how the game works (if I can figure it out myself!), but he has taken to gently pushing me away and saying "I'll be right back", which in T translates as "Go away." J (He wants me to say "I'll be right back" and then leave, so he prompts me by saying it to me first. Brilliant reasoning, I must admit.)

Note: he has not ever played any computer games other than cause-and-effect games – press a key and something happens – and he hasn't shown interest in those in about a year. We've tried to show him how to point & click with a mouse and move it around, but until Friday, he never indicated that he caught on or showed any interest. Just sitting and watching.

There was a new game on his favorite computer, which looked pretty cool. It was a shape-matching game, and required no clicking of the mouse at all. You just swiped the curser over the shape at the bottom of the screen – which "picked up" the shape – and then you slid it over the matching shape at the top of the screen. I showed T how do to this; he replied by saying "I'll be right back", and I obliged. I came back after a few minutes AND HE WAS PLAYING THE GAME BY HIMSELF.

I didn't know whether to jump for joy or cry or play cool or what. So I stood there in disbelief, jaw dropped, hand to my mouth, in sheer and utter amazement. I then went over to the resource librarian's desk and asked what software was on the children's computers. At first, she seemed a little defensive or annoyed, but I explained that I was witnessing a minor miracle from my autistic son – that he was playing a computer game for the first time all by himself. Well, she was pretty excited about that and was calling everywhere to find out what the program was. She first asked if I could close out the game so we could find out what it was, and I said "Um, I'm not really wanting to interrupt this!" and then she realized how silly that was. After a few phone calls, she had gathered every possible bit of identifying information she could (such a good librarian!) so that I could order it for him. Then she said that this was worthy of notation in their log, and happily went on her way to document the miracle.

Then I stood there in awe. I called Rob to share the moment. He was stunned too. Not that we didn't think that he couldn't do it someday – we knew he could – but playing computer games was yet another way that we got to see just how different typically developing children are from him. Kids his age are computer whizzes. I watch his cousins maneuver the Webkins website and am completely amazed (brilliance in all its different forms runs in the family). But Friday, getting to watch him play this game was like witnessing a miracle. Once again we have proof that he is capable of learning challenging tasks. Every skill he gains is another step toward an independent life. I saw into the future and he was at a desk doing computer work. I've dreamt it, but the dream became more of a vision of possible reality today.

It was a magnificent day. You go, T.