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.

“Does he have issues? Cool.”

Children have provided us with some of the best questions about T, and today was no exception. We took him to the playground at his elementary school this afternoon because the city park where we usually go was packed with other families celebrating Mother's Day. There were some other children playing there, who greeted us upon our arrival. One of T's favorite things to do at a playground is climb the stairs all the way up to the tip-top of the curvy slide, sit at the top, and enjoy the view. Only occasionally will he slide down, but today was not one of the days he was feeling it. Thankfully, the other children were very busy with other parts of the jungle gym and it really didn't matter how long T sat up there. After a while, one of the girls came over our way and went up to the top of the same slide, a basketball in hand. She put it down, and T efficiently pushed it down the slide. We weren't sure if that was what she intended – probably not – but we retrieved it for her and she slid down after T made room for her. She chatted with us in that curious way a child on a playground will, asking when his birthday was. It turned out that she and T have the same birth month, which she thought was cool. Turns out she is just a few weeks older than T & goes to this same school. I told her that he comes here also on Friday afternoons. She was quiet for a moment, and then asked quite simply: "Does he have issues?" Rob & I grinned, and said that yes, he does have issues. I told her that he is in Mrs. E's class (the self-contained special education classroom), and her honest & straightforward reply was "Cool. Her class comes to our class sometimes and hangs out with us."

"Cool." It is just fine with her that he is different. I have to say that kids impress the hell out of me sometimes. It really shouldn't surprise me – I mean, the kids in this school grow up with the most impacted special education students in their own school, coming to their classrooms as they are able, and it is NORMAL for them. This question from this young girl follows the great question I got from another little boy at this school: "Is he artistic?" And again, when I said yes (with a grin), his response was "Cool. I have a friend who is artistic."

Moments like this make me want him at this school more frequently than one half day a week. I'm SO thankful that this school will be ready for him when he is ready for it, and I can't wait.

I honestly can't remember any interactions I had with any special education students in my public school career. Where were they? It certainly was a different time.

Packing List

I just had to update T's packing list today. Off the list came:

• Pull Ups
  
• Swim diapers
  
• Special foods
  
• Honey (leftover from SCD diet)
  
• Petroleum jelly & Desitin
  
• Pull Ups for diaper bag
  
• Bed rail
  

How far we've come. Woohoo!

We've told T that we're visiting relatives this weekend, and he has been saying all their names repeatedly all day yesterday and today. A shocker tonight: he named their previous dog, whose name we haven't mentioned in MONTHS! We met this dog Memorial Day weekend last year, but haven't talked about him in ages. And suddenly, there was T naming this dog. He really listens and retains language now…we have increased evidence of this every day, and I continue to stand in awe of this little guy. What else do you have going on in there, buddy? Can't wait to find out.

Excited to pray

Two nights a week, I put T to bed. Rob usually does the evening duties, but it is fun to have the chance to say goodnight to him and get nighttime snuggles before he drifts off to sleep. T likes to stick to routines – no surprise there – but Rob & I have managed to put our own spin on the evening bath time & reading routines. So from very early on I've sung a lullaby to him, and when I realized he was able to finish sentences, I taught him a little prayer as well. It is so very cute to hear his little voice finish each phrase and I love to hear it. Even so, I had gotten out of the routine because he likes to have three books read to him at bedtime, and by the time we are done with those, lately I've let the lullaby and prayer slip. But tonight I remembered to do them, and he was so happy! I started singing the lullaby and the biggest, most pleased grin spread across his face. When I started the prayer, his little fingers started rolling & strumming and he kicked his legs under the covers, vibrating all around – he was SO EXCITED to pray.

I happily went through our bedtime prayer – twice, even – thinking that I could learn a lesson from him about being excited to pray.

The last words of our prayer are "every day". Tonight, he repeated it to me. I said it back, and added that I love him every day, and every minute of every day. Then I said that I know he loves me, too. He looked at me intently, grinned, and said again "every day." "Yes, everyday. I love you every day. And you love me, too."

Every day.

Life is good

It's been awhile since I've posted. This is primarily due to two over-riding facts: 1) I'm so busy with everyday life and 2) T is really doing very well. We're in a nice groove lately and it feels good. He continues to impress us with how much he understands spoken language. He has gained so much confidence in using words – it's terrific. The biggest change I've witnessed was from last spring's Motor Activity Clinic to this year's. He bonded right away with the college student assigned to him, and stuck with him throughout the two hour time period. They went in the pool together and the student (I'll call him J) got him to let his legs float out behind him and kick right away on the first day – last year it took weeks. (T prefers the Wrap Arms & Legs Around Person In Pool With You technique, so this was no small matter.) And during the hour of gym time, they moved between about 15 different activities – no eagle shrieks, no protesting – T just went with his new buddy J wherever J took him. No trouble whatsoever transitioning between activities - it was SO cool. About an hour & 45 minutes into the 2 hour session, T saw me, walked toward me and said "Mommy's car." Okay, he'd had enough and was tired. But even there, that communication was terrific: There's Mommy, and I'm ready to be done with this, so I want to go to Mommy's car now. But he was excited to go back the next week, even saying "pool" repeatedly on the drive downtown.

Side note: I have to say that I love his new speech. No, it is not typical – and I couldn't care less. It WORKS and it's CLEAR and I love it. When he wants to leave, he'll say "Mommy's car". When he wants to be left alone, he'll say "I'll be right back" (which is what I say to him each time I go in the bathroom to see if he's done sitting on the toilet and he's not done – he's transferred that phrase to me going away, so now he has a way to say "go away". Awesome!

Did I mention that he's potty trained? I think it is safe to say that we are there. He is potty trained. I pause here to recognize just how monumental that statement is. I think I've never been as close to panic and despair as I was all those months and years I put in sitting in the bathroom with him, hoping and praying that he'd someday poop in the toilet. It started mere days before his 7^th birthday – his first poop in the potty – and he became more & more consistent until after a few months, pooping in the toilet consistently was no longer an issue – it was his habit and something he wanted to do. The next hurdle was getting him to tell us when he needed to pee. That took a little more work, but it was nothing compared to the years of work I put in encouraging him to poop. Then it was Pull Ups only for horseback riding and other longer excursions. No more. He's in big boy underwear 100% of the time during the day – diapers only overnight, and I can live with that! I'm so proud of him, and SO relieved. It's a freedom moment for mommy, too. He still tells us when he needs to go and we take him to the bathroom, but then he does it all by himself. Pretty soon he'll be completely independent, and I am filled with thankfulness and pride for all the hard work he's done.

I'll post another time about his new cranio-sacral therapist. She is a true gift to him and to us. She is in awe of him and loves working with him – and both Rob & I feel the same way about her.

My job is good. Work environment terrific, colleagues amazing. What's more: I come home every day knowing I've helped a fellow family with a special needs child. Rob's making good progress on his dissertation. And honestly, in this economy, we are thankful for having our home and for being able to provide for ourselves.

I'm kinda waiting for the other shoe to drop – have been for several months. Guess that's the expected side effect of years of trauma and angst. But the constant state of emotionally looking over my shoulder seems to be dissipating. I'm enjoying a lull from drama. It's all good. I better not regret typing that.

Another side note: Rob & I started brainstorming about writing an article on the emotional development or identity development of the special needs parent. In all our spare time. Hah.

 

 

It’s ugly out there

I live suspended between two realities. One world: at home and in our world of therapy clinics and loving people who dedicate their lives to working with children with special needs. Once through the heartache, this can be a beautiful place to be. (Recall the Welcome to Holland poem?)

The other world: one where a student with autism gets tazered by a police officer at school because 1) the school didn't follow the legally binding behavior plan that was in place and called the police when the student had a melt-down and 2) the officer that was dispatched didn't have training in how to deal with people with autism. This is the same world where a student on the spectrum was hit and killed by a bus at school because he was dropped off in the parking lot and had to walk through parked cars into a driving lane of oncoming traffic. Both of these horrible events have happened in my city in recent days.

I live suspended between having so much hope for our T's future and being so completely frightened by the world that doesn't understand him. It's an especially dangerous world for him, and it's ugly out there.

I will choose to continue to "look to the light, and keep looking there because there's way too much darkness" (a quote from a parent mentor, 80+ years old with a 50+ year old autistic son.) I must.

 

 

 

Christmas 2009

This Christmas was noteworthy. For the first time, T spent almost the entirety of Christmas Day with us. Now, this is no small matter - for several reasons. First, my family does Christmas the slow way: we open presents one at a time, and appropriately Oooh and Aaah over each one, try it on, play with it, hear the story of why it was purchased, etc. This only happens after we have been thoroughly breakfast-ed and coffee-d, much to my dismay as a child (because coffee takes so long to drink and everyone has to have several cups of it and there are PRESENTS OUT THERE, for crying out loud!) Then of course there are the eggnog breaks, and several timeouts for more coffeecake or cookies as the day rolls on. This Christmas was no different – the Opening of Presents started mid-morning and went well into mid-afternoon – and T sat with us almost all day. It helped that many of his presents were of great interest to him - toys that spun or whirred or ran down a track – but doggone it; there he was, right with us.

In previous years, he wouldn't be with us at all. He would only come join us in the room with the big tree and all the presents and wrapping paper when prompted, and opening a gift…well, that just wasn't something that came naturally. (A prime example of how our kiddo did not, until recently, learn from watching others' behavior and imitating it – EVERYTHING had to be taught to him step by step, and still does.) So there were always these stinging moments in previous Christmas mornings: a special gift from a family member would be presented to T all wrapped in pretty paper, and he'd just be staring off into nowhere in particular with the present in his lap – then I'd take his hands, limp as could be, and try to show him how to find an edge on the wrapping paper and start tearing, none of which he seemed to understand or be interested in, and once it was opened, it was usually ignored. Most of his Christmas day was spent in a separate room, watching videos while we opened presents. Another situation of the balancing act Rob & I live: joy and sorrow all wrapped up in the same moment. Joy at Christmas morning with my family around; sorrow that our son wasn't able to participate. I always hoped that someday he'd get it.

This year, he was much more aware of what was going on, and while we still had to pick up a gift and put it in his lap, he knew to rip the wrapping paper to open the present. Once opened, he played with the toy. SO majorly huge – and so different from even last year! He even seemed to get that Santa was one really cool dude. Quite often during the season, if he'd see a picture of Santa, he'd get very excited, smile at me with a HUGE grin and say "Santa!!!" And we haven't even played up the whole Santa thing at all! He MUST be picking up on these things by LISTENING and COMPREHENDING – much more so than previously.

I have learned from previous Januarys not to say "I think it's going to be a good year." So I'm not saying it. But…progress is happening. T is learning. This is ALL good.