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.

“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.

“Coat Off” and “Ezra Black Keats”

It's been a while since I've posted, and I'm quite thankful to report that the echoing of my name has vanished, for those of you who have asked. Thanks for checking in.

We continue with the intense Verbal Behavior therapy 32 hours/week, the Methyl B-12 injections and the detox-ing, and we also continue to see slow but steady improvements in behavior as well as expressive and receptive language skills. It is SO totally cool. Two very fun things came out of T's mouth today which I just had to share.

First: T has been able to request and label the action "coat off" for quite some time. This winter, he has a new coat which not only zips up but Velcro-s shut as well (fancy coat!) T is not yet able to open up the Velcro to access the zipper. Each time he wants to take off his coat, he'll look at me, reach to my hands and say "coat off." Today, because it is so blasted COLD, I switched up the usual coming-home routine by taking Chester outside before I had taken my coat off and had assisted T with his. I usually throw a frizbee to Chester, since he's been home all day without us around, so I took a few moments to play with him. After about a minute, T opened the back screen door, peeked around at me with his coat still on, and said "Coat off!" It was such a TYPICAL kid moment…as if to say "Hey Mom, you forgot something!" I laughed and came inside to help, and gave him a big hug for using words to ask me for help.

Second: Rob has been terrific about telling T the author and illustrator of the children's books he reads to him. T can now name the author of the small library of books he will allow us to read to him – very cool. One of his favorites from a few years ago, The Snowy Day by Ezra Jack Keats had been, until recently, shunned from his list of Allowable Reads. I'm glad to report that is has now been deemed acceptable to read it to him again. He likes it so much again that the author has become part of his echolalic repertoire, but with a fun, sweet and decidedly appropriate twist: he says "Ezra Black Keats". Gently, I try to correct him, but he is convinced, it's stuck, and now when we walk around the grocery or are on other errands, he'll flip his fingers and say "Ezra Black Keats." I just have to smile.