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.

"Suzanne"

I’ve written here before about fun echoics T has said, such as:

Therapist: “You eat with a…”
T: “Shovel”
…and I do have to report a new one from last week:
Radio: “This is NPR news…”
T: “...in Washington.”

Great fun, and a super party trick. However, a new echoic showed up last night, and I’m having a very different reaction to it. He’s heard people call me by name all his life, and yesterday, T started echoing “Suzanne.” I’ll admit it was funny at first, hearing my son say my given name. But this morning, as he was sitting at the table eating breakfast, he said “Suzanne. Suzanne. Suzanne,” over and over, doing his little finger flap thing. I know it was just a stim. But it really got to me. It broke my heart. This is the one child in the world that may ever call me “Mama” - and he only says it when prompted - but there he was, saying my given name over and over and over again and it meant nothing. AND I couldn’t respond. I ignored it – I had to – because I certainly do not want him to start calling me by name, which very well might happen if I give him a big reaction.

I got really angry, too. Every repetition of my name made the anger rise higher. Stop saying my name. I’m your mother. I am not Suzanne to you. I am your Mama. I have put so much time and energy and life blood into you, and I’m standing here ignoring you because you are saying my given name, because if I react, you will continue to do this. And the hell of it is, you don’t even realize what you are doing. It’s a meaningless stim. But it’s killing me. Do you know how much I ache for you to say “Mama” when you want me? How much I want you to cry out for me in the night when you are sick or scared? How on the few nights when you are able to say “Night night, Mama” unprompted (even though it is within the context of a very routine event every night), my heart leaps with joy? Every “Suzanne” was like a knife in my heart.

He never saw a bit of my heartache & anger. Had to swallow it and go on. I just had to outwardly let it go and go about my morning routine.

More emotions

So here we are, a few weeks into the whole detox (chelation) thing. A fellow mom from school asked me if I had noticed anything different – certainly a fair question. We are turning out to be the test run for a few other families at T's school – everyone is nervous about chelation – so naturally, they really want to know how T is doing. As with so many of these interventions, we have not seen immediate, remarkable results (i.e. "I took gluten out of my kid's diet and he started talking in full sentences the next day!!!") (I just want to smack those parents who have that result. Not very charitable, but honest.) But what we have seen is, for lack of a better way to describe it, that his brain synapses seem to be firing better. More connections, more requests, more intentional eye contact (i.e. "Can I?" expression that he has) and interestingly enough, he seems at times to be more emotional. Today was a great example.

He has overly sensitive ears, so things like disposals in the kitchen sink really hurt his ears and scare him. When I need to use it, I give him fair warning ("Okay T, loud noise") and he'll cover his ears and say "Turn it off!" when I do turn it on. But usually, that's that – it's not any big dramatic thing. Not today. We went through the usual routine, and after I turned it off, he looked at me, the lower lip started going, tears welled up in his eyes, and he started crying. And here's one heartbreaking aspect of T's autism – you can't console him. He doesn't want to be held – it just makes things worse…usually. So, I knelt down in front of him, took him by the hips so as not to overwhelm him, and said "Oh T, I'm so sorry. I didn't mean to scare you." He backed up a bit and hit the top of my head with his hands (it was gentle, but nonetheless a definite "you pissed me off" hit.) Side note: I don't outwardly condone his new little bursts of temper when he hits things in reaction to being angry or thwarted, but inwardly, I'm cheering him on. It's SO neurotypical! You go kid!!!) So I didn't react – a skill I've learned from his Verbal Behavior therapy – and then was completely surprised by his next action: he put his arms around my neck and HUGGED me. I put him on my knee and hugged him right back, and there we stayed for a full two minutes or so – hugging each other. He continued to cry on my shoulder…again…so neurotypical…and I held him and took it all in. His sobs calmed after a bit, but he was still holding on to me so I kept on hugging him, and didn't ever want to let go. My son was consoled by my embrace.

A God Moment.

When he was calm, he pulled away gently and said "Tissue" so he could wipe his nose. He did, and then went on his way.

We may never know if these developments are due to the chelation or just normal human development. What matters is that it's happening. I'll take it either way.