June 29, 2010
Posted by Alysia Butler under My Three Sons
, sensory processing disorder
| Tags: autism
, occupational therapy
, sensory breaks
, Sensory Processing Disorder
, summer vacation
The scene: Two days after school has ended. It is hot and humid outside – too hot to be out. It’s almost 10 am, and the kids have all been up for 4 hours already (you know, because there’s no school). Hot Wheels cars and trucks cover every room in the house, making it almost impossible to make coffee without tripping. Howie is in full blown out of control mode, running laps in the house and smashing himself into me and anything else he can find. Lewis is moaning like Chewbacca, doing his best to get my attention as he takes everything out of the pantry cabinet searching for something he can open himself. Gerry is overloaded with the noise already, on the verge of tears because there’s no quiet in the house at all. A diaper change becomes an impossible task, as Lewis wiggles and Howie hangs on me crying for a hug and Gerry stomps up the stairs. Just as I’m about to reach for the can of chocolate frosting I’ve hidden away for just such an occasion…
a knock at the door.
And in walks Mrs. L.
Mrs. L is an occupational therapist, good friends with Howie’s school OT. When I talked with his school OT about at-home services, she told me that her friend may be able to help. She works in a nearby school system, but has extensive experience with kids with sensory issues like Howie. I contacted her a few days before school ended, and asked if she’d be able to come out to the house and observe like “Supernanny” does, sit on the side, see how we all interact, then let me know what we need. Thankfully, she agreed.
I had worried that she’d come on a day when everything was running smoothly, like those days when you bring your car into the mechanic after weeks of it making a funny sound, and then on that day the car runs fine. But no, on that day our house was in full chaos. Mrs. L walked in to a sensory firestorm. And didn’t seemed bothered by it at all.
We sat at the table, and while Lewis climbed into her lap to draw on all her notes, we talked about Howie and all his issues. I had sent her a copy of his IEP, his OT reports and evaluations, his PDD-NOS diagnosis, and his early intervention notes so she knew all about his background. She was impressed by what he had had so far, and reassured me that we were on the right path. She talked to me while Howie was making noises and bouncing off the walls. The dog was barking incessantly upstairs. Gerry was playing a video game that I had asked him to turn off 10 minutes earlier. I was trying hard to focus on everything she was saying while filtering out the craziness around me. Mrs. L stopped talking, looked right at me and said “Three boys and a dog, eh? That’s a lot to handle.”
While that was clearly the understatement of the day, it was also our instant connection. She understood me. She knew that I couldn’t put in hours and hours of clinic therapy time. She knew that I was going to have problems keeping a busy and consistent routine for Howie, because I had other competing interests in the house. She knew that I was all at once overwhelmed and underachieving, a combination that leads to the type of morning we were having right at that moment.
Mrs. L broke it all down for me. She said she treats kids with sensory issues like they are a bank. We need to make sensory “deposits” in their bodies in order for them to get through the day without meltdowns and transition problems. She asked me if we’d ever been to a birthday party on one day when things went smoothly, and then another party a week later when things fell apart. The key, she said, was to examine what happened up to that party – on the smooth day, we had a good night sleep, lots of sensory input through play, a good lunch, and a calm ride all equal the ability to draw on the sensory “deposit” and get through the party. Throw in a tough night sleep, a change in routine, no lunch, and rushing around and this will deplete deposits and limit the ability to function at the other party. It made total sense of course. We all get a little “off” when days don’t go smoothly, but for kids with sensory processing disorder not having that reserve to pull from will make the rest of the day impossible to get back on track.
We talked about ways to build up those reserves everyday. Get him swinging high on the swings every morning for 15-20 minutes outside. If the weather’s bad, create an inside obstacle course that has both controlled body movements (stepping over a tower of blocks) and squishy input (jumping into a bean bag chair, then pretending to swim under it). She set up a course in the house, and as she had Howie move through it, she explained what each part was doing for him. She also suggested expanding our picture schedule, getting Howie involved in planning it that morning so he knew what was happening. We created an “oops” card to use when the schedule changes.
Then she did something no one had done before. She saw Gerry sitting there, desperately trying to figure out his place in all this. Mrs. L pulled him aside and explained to him what we were doing. She told him that Howie’s engine runs very high, and unlike him and most of us, he can’t slow it down on his own. We need to teach him how to slow it down, and the obstacle course or the swings were ways to do that. She told him that once he learns how to do these things, he will be much calmer and quieter, which helps us all. Mrs. L asked Gerry if he would help plan the next course. All of a sudden, Gerry had a role in this. His attitude changed, and he asked what he could do to be more helpful. I looked at Mrs. L with tears in my eyes and mouthed “Thank you”.
Mrs. L offered to come back again if wanted, but she didn’t think we needed consistent therapy if we implemented a few of these things. She told me to hold off on clinic work for now, and reminded me that we just needed to tweak what we had. With that, she said goodbye to the kids, the dog, and gave me a hug telling me to call whenever I wanted.
I closed the door with a sigh of relief. With her virtual “spotlight”, Mrs. L had pinpointed our most pressing problems, and guided us with a light to the solutions.
And for now, the can of chocolate frosting is still in the cabinet.
“And I feel
Quicker than a ray of light
Then gone for
Someone else shall be there
Through the endless years” – Ray of Light by Madonna
June 23, 2010
(or more appropriately, going to the golf course)
My mother is getting married this weekend. We are all very excited for her – she has met a wonderful guy and lightning really seems to have struck twice for her. When we heard the news I couldn’t wait to share it with the boys. As I was telling them all about it, who would be there, and when it would be, these words came out of Howie’s mouth:
“Mom? Will you keep me safe at Grandma’s wedding?“
Initially, I didn’t know what to say. I wasn’t exactly sure what he meant, and gave a quick “Of course! It’s my job to keep you safe.” and dismissed it at that. My kids have been to many weddings (including their other grandmother – how many kids can say they’ve been to both grandmothers’ weddings?) so it wasn’t the fear of the unknown.
As I found out a bit later, it was the fear of the known.
A few weeks later, we were talking about the wedding again. And again Howie asked me if I would keep him safe. As the wheels began to spin in my head, I asked him what he meant by that. “The music, Mom. And the noise. Will you keep me in a safe place so I’m not near the noise?”
Any excitement I had been feeling about the wedding turn to instant panic. Howie’s sensory processing disorder was about to take over any and all planning for the event. As I mentioned, we had been to several weddings before, including a few loud ones about 2 years ago. We spent most of the reception outside in the mud – Tim and I couldn’t even drag him into the tent when the music was playing. Finally we gave up, and went back to our room to escape. But that was different. We didn’t have to be part of the festivities. This was my mother’s wedding, and I (we) had to be there.
In the past, I would have melted into a total state of anxiety, my head filled with ways that this could go wrong. Instead, I called on my army of supporters – his teachers from school and his occupational therapists. They know him almost as well as I do. And I asked for help.
His incredible teachers and OT sprang into action and helped me form a game plan. First we created a social story for him about the wedding weekend. For those of you who don’t know what a social story is, it’s an “intervention attempt to improve the social skills of children with spectrum disorders by using individualized short stories to help them interpret challenging or confusing social situations. The stories have a specifically defined style and format. They describe a situation in terms of relevant social cues, the perspective of others, and often suggest an appropriate response.” (thank you Wikipedia) It’s a way of using pictures and words to help prepare the kids for what is coming, so that transitions are easier and the routine is predictable.
His teacher used pictures of our family to describe each day what was going to happen – from the day we leave until the day we come home. She used a format that was familiar to Howie from school so he understood it completely. She wrote places where he might see lots of people, prepared him that the party might be loud, and there will be a lot of unfamiliar smells from the food, and that he can ask in a “just right voice” anytime he needs a break. She had pictures of him in handsome clothes, and wrote that we would be taking lots of pictures. She even wrote out a list of 4 wedding rules for him to follow during the ceremony. His teacher came over to the house yesterday and went through it step by step. And although the picture she used for our car wasn’t exactly right as Howie pointed out, he really got it. At one point he told her that he wanted to be in a safe place for the wedding, and she showed him the page for asking for breaks and gave him the words to use with us. It was awesome.
Next we put on our SPD lens (thanks Martianne) and looked at the weekend through Howie’s eyes so we could anticipate his needs. I bought Therabands for the car ride up and have his weighted blanket ready to go for both the car and for sleeping. I’m bringing his own pillow for the bed. I asked my mother if she could put us at an end of the head table as far away from the dance floor and speakers as possible, and we’re bringing our noise canceling headphones. Tim’s in charge of taking him outside to the golf course area or even the car if he gets overloaded at the reception. We thought about at staying at a hotel when the weather looked like it was going to be in the 90 degree range because Howie sleeps in long sleeves and four blankets and there’s no air conditioning at my mother’s house. Now the weather looks a little more tolerable, and with some fans for air and white noise I think staying with at her house with my family will be possible. We’re going to stay busy – walks, kickball games with cousins, races before the wedding, lifting suitcases, obstacle courses – anything to keep his body moving as much as we can to give him the sensory input he needs.
And of course, lots and lots of hugs and squeezes whenever it is requested. Because after all, it is my job to keep him safe. Even at my mother’s wedding.
“Spring is here,
theeee sky is blue.
Whooooa! the birds all sing as if they knew.
Today’s the day, we’ll say, “I do”and we’ll never be lonely anymore.” - Going to the Chapel by The Crystals
June 20, 2010
(a tribute to my dad and my husband for Father’s Day. While the song title might not fit perfectly, I remember listening to this in my father’s Volvo as he drove us to school)
It’s now eleven Father’s Days without you. Some days it feels like you were just here, and some days it feels like you’ve been gone for decades.
I don’t know why it’s taken me all these years to actually sit down and tell you about what I’ve done since you left us. Maybe I just wasn’t ready. Maybe in some ways I wondered if you were disappointed that I didn’t run for re-election after completing your term as state representative. I knew stepping into your shoes then was the right thing to do since it was what you wanted. But when the time came to run again, it wasn’t right for me anymore. It wasn’t my life – it was yours – and I had to start my own life, discover who I am, and start my own family.
So let me tell you about this amazing family of mine:
Our oldest son is Gerry, and yes we named him after you. He actually looks a lot like you, and has my (and your) dimples. He’s incredibly smart, curious, kind, and thoughtful. He has already developed a commitment to community and social justice in such a way that it can only be genetic. Kids want to be his friend, and parents want their kids to be friends with him. Oh, and he loves baseball. He’s small and quick and is well suited to play second base or shortstop, just like you. I think you would be impressed with his skills on the field, and his love of learning off the field.
Howie is our middle little guy. He has huge brown eyes that light up when he’s excited, and they sparkle when he laughs. He’s loving and full of energy. I could call him our “spirited” one, but I’m not sure that’s an appropriate characterization. There’s always been something about him, even as a baby. He was a late talker and walker and had a difficult time adjusting to, well, life. He was diagnosed with autism spectrum disorder and sensory processing disorder at age 3 1/2. Hearing that there’s something a little different about your kid wasn’t easy, but in many ways it was a relief. So many of his behaviors were finally explained, and it helped to know that there was a neurological reason behind his issues. I’m lucky to have grown up in a house with you and Mom where you taught understanding and tolerance of different learning styles and abilities. It doesn’t make the days less challenging, but it gives me the strength to get through the hardest moments. I know you would be impressed by his knowledge of Hot Wheels cars and his fiercely strong connection to the people he loves and trusts.
Lewis is our baby, although he’s quickly approaching Howie in weight, height and strength. He has an incredible belly laugh and these terrific curls. He clearly takes after our side of the family in his love of food and table manners – there’s rarely a meal when I am not picking something off of his shirt or out of his hair (but of course, the same can be said of me). While he isn’t talking as much as we’d like at this point, he loves music and sings and dances along with everything from “Old McDonald” to “Golddigger”. He’s incredibly curious and has already developed a great sense of humor. I think you’d be impressed by his comedic timing, and he’d have you “eye-squishing” with his silly faces and games.
And then of course, there’s my husband Tim. I will be forever thankful that you met him before you got sick, and I’m so glad that he had a chance to know you. When Tim and I married 9 years ago, it was a sense of comfort to me that he understood me and and how important my family was. Over these years he has become an amazing life partner, and an even more incredible father. His bond with Gerry goes deep – they enjoy the same love of science and thirst for knowledge, and every evening in the spring they are out in the yard having a catch. With Howie, he shows patience in situations when I can’t and has gone the extra mile to learn whatever he can about ASD so he (and I) can be a better parent. He has looked for ways to connect with Howie and have bonded over a love of cars. And he has some strong connection with Lewis : Tim is in charge of his bedtime – reading stories, singing songs, and got him to sleep in his crib earlier than any of our other kids ever had. There’s is no doubt that you would have been impressed by his commitment to his kids and to me. While you probably would have disagreed on almost everything else, this dedication to his family would have been your common ground.
So while I had to step out of your shadow in the world of politics, you can see that I really did follow in your footsteps. I have created an incredible family, and am raising my children to be good to each other and the world around them. I have learned through necessity to be fierce advocates for them – as you were for us. My experience with Howie’s issues have taught me to be the voice for those who can’t speak, just as you were in your public political life. Where that might lead me in the future, I don’t know. But I do know that I have an incredible path set out for me to follow, thanks to you.
Happy Father’s Day to my amazing husband and all the other fathers, fathers-to-be and fathers-that-should-be.
“It’s not time to make a change,
Just relax, take it easy.
You’re still young, that’s your fault,
There’s so much you have to know.
Find a girl, settle down,
If you want you can marry.
Look at me, I am old, but I’m happy.” – Father and Son by Cat Stevens
June 16, 2010
I have a friend who loves summer vacation. She loves when her kids are home, and they have no place to be and no schedules to follow. She loves to just kick back in the yard, sit in the sun, and watch her kid run around.
That’s not me.
Truth is, summer terrifies me.
I can’t remember when that started. Maybe it was the summer when we moved here – Howie was 4 months old, Gerry was 4 years old and we didn’t know anyone. Howie was a tough baby, and would only sleep on me, wouldn’t take a bottle and cried a lot. We were pretty much trapped in the house and didn’t know what to do. Trips to the park were tough because I couldn’t watch Gerry and take care of Howie’s needs too. That got harder as Howie got older, and I tried hard to find things to do ahead of time for Gerry so he wasn’t stuck with us. He did camp after camp after camp until he was finally so burnt out on activities he wouldn’t leave the house. Last summer was the hardest by far – with a 9 month old Lewis and his naps thrown in the mix of the chaos, I was desperate for school to start again in September.
But something about this summer makes me more nervous. Howie has done such an amazing transformation through his school routine. His transition tantrums are less, he’s completely toilet trained (yea!!), and he has learned very good coping strategies for dealing with his sensory issues. Of course, that is with a very scripted school schedule, a one-on-one aide, and OT and special education supports all day long. On school days, I just had to fill in the gaps – time before school and the few hours afterwards until bedtime. Now that’s all gone. Add in Gerry home and wanting to do his things, and Lewis at the age when he refuses to just sit in a stroller at the park while I chase Howie everywhere, plus needing to be home between noon and two everyday for Lewis’ naps…I’m going crazy just thinking about it.
Howie’s only been home for one morning so far and has already needed four sensory breaks, been through 5 cups of juice (his calming mechanism), asked for 15 hugs and spent some time in his body sock. This is after already going to the supermarket and playing kickball outside with Tim before he left for work. It’s not even noon.
I’ve seen other people’s blogs where they’ve talked about their completely scripted summer days to help their child make it through each moment. We talked with Howie’s teachers and they agreed that as much routine and scheduling as we can do would be beneficial, so when he starts to spiral out of control we can bring him back to the picture schedule and show him what is coming next. I know he needs that predictability, that understanding of what is happening so he can regulate himself.
But it’s not me. And it’s not my life with my three boys. Life is going to get in the way. Lewis may need a nap earlier because he was up all night (like last night) and our entire plan may need to change. Playdates, rain, extreme heat – all will change our plans.
I will try to set up a daily schedule and leave some flexibility for plan changes. I’m trying to think of at least one thing to do each day to get us out – today supermarket, tomorrow Target for diapers. I’ve hired a mother’s helper to come be with just him for an hour or two twice a week, and summer school starts back in July with a shorten version of the school schedule. And I will hope for the best.
Meanwhile, is it September yet?
“School’s out forever
School’s out for summer
School’s out with fever
School’s out completely” - School’s Out by Alice Cooper
June 12, 2010
Last night I spent some time in the company of some amazing women. All mothers, all with school age kids under the age of 10, all of whom “get it”.
About a month ago, a friend and I had the idea to start a small support group. The original idea was for mothers or fathers of kids who are on the spectrum, and with the help of the school district, we reached out to parents to see if anyone wanted to meet, just to talk. Our first meeting last month was so nice that we decided to meet again. And last night, our group expanded. Friends brought friends who had kids on IEPs. Friends brought friends who had kids with diagnoses but couldn’t get IEPs. And as the sangria and wine and spinach dip flowed, we sat and just talked. Some of us were meeting for the first time. Without having to say it, we all knew we were in a safe place to share our feelings, vent our frustrations, and tell our stories. When one person talked, the whole room nodded along. Because we all “get it”.
This is what we “get”:
We “get” that no matter how many books or papers we read about our kids’ issues, we always feel like we’re reinventing the wheel and going it alone.
We “get” that even with the best of intentions, sometimes our husbands/family/friends just can’t understand what how challenging our daily lives can be.
We “get” that it’s frustrating to have to be our children’s best and sometimes only advocate, and wonder why the teachers/administrators can’t see the struggles that our kids have, and we wonder why it’s so hard sometimes to get them the help them need.
We “get” that sometimes you have to do whatever you can just to get through the day (or night), and if that means having your kid sleep in your bed or do laps outside the house at 9pm, then so be it. We know to pick the one or two or three most important battles of the day and deal with the rest.
We “get” that you would move heaven and earth to do anything to help your kid, but financially and logistically it’s not always possible. And we understand the guilt that comes with feeling like you’re never doing enough.
We “get” that sometimes the stress is too much to handle alone – the worries and wonder that keep us awake at night long after our kids have come into our beds at 2am. Will our kids talk? Will they succeed in school? Will they have friends? Will they have jobs, go to college, have a family of their own?
We “get” that we all have a fear of the playground, birthday parties, and family get togethers. But we know that we have to let go of that fear, surround ourselves with people who care and understand our kids, and get ourselves out there.
And we “get” that some of us couldn’t meet past 10:30pm, since that’s about the time when our kids start their night waking routine, and that in many cases we’re the only ones who can comfort them back to sleep.
As the sangria dried up and the last of the spinach dip was eaten, I asked everyone if they wanted to meet again, maybe skipping a month until August because summer can get so busy. The general consensus was we didn’t want to wait that long. We wanted – and maybe needed – to meet again in July. As one mother put it, “I might get a little crazy if I go that long without meeting with my girls!” Couldn’t have said it better myself.
“Lean on me, when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
‘Til I’m gonna need
Somebody to lean on” – Lean On Me by Bill Withers.
June 10, 2010
Happy 8th birthday! Oh, all the things I want to say you on this day! But you’re at Fenway Park with your dad right now for your special birthday game. I wanted to go with you (you know, because rooting for the Red Sox together is our thing) but logistically it just worked out better for Dad to take you. Plus, I think he really enjoys taking you to the games (especially because I got really good seats this time) and he knows we’ll spend less if he goes (you know we’d be coming home with more Dustin Pedroia bobbleheads and jerseys if I went!) I hope he remembers to have you look up at the scoreboard when the Red Sox wish you a happy birthday. Because not every kid can say they’ve seen their name up there not once, but twice now.
There are so many many things I love about you. First and foremost of course, is that you made us parents eight years ago. A life changing event in so many ways, of course, but for me it led me down a path I never thought I’d take. I was working 12 hour days and teaching when you arrived (in fact, I was writing curriculum when I was in labor with you), and had always assumed I go back to work. A few weeks home with you and I knew I couldn’t leave you. With your growth issues, you needed me. And so home I stayed. Eight years later, here I still am. My “job” is to now be home with you and your brothers. It wasn’t an easy choice, but one I never regret.
I see so much of both me and your dad in your looks and your personality. Actually, you look a lot like my dad did when he was your age. You have his athletic ability too, and I love that you enjoy playing baseball as much as he did. Like him, you’re small but quick with excellent skills. And you listen. How great was it that your coach this year said how much he liked having you on the team because you were so “coachable”. Like my dad, I think you’ve found a sport that you can enjoy for life. I love how you just want to go out and play ball – even alone – but it’s so much fun to watch you and your dad have a catch in the yard. I know your dad likes that too. He’s told me about how far you’ve come with your skills and you’re getting better than him! You and you dad are so much alike in many ways – you are both incredibly smart, articulate beyond your years, and have a curiosity and lust for learning that many adults don’t possess. I like listening to the two of you talk about cars, science, and how the world works. Now if I could only understand half of what you were saying…
I hear time and time again what a “good kid” you are. Of all of your special qualities, this one is the one that warms my heart. Your teachers have said it, your friends’ parents have said it – they all enjoy having you around. You’re polite, fun, engaging and easy going (and you don’t eat a lot!) Kids want to be your friend and parents want their kids to be friends with you. That says a whole lot about you as a person. You can’t teach that. That’s just you. And that is truly awesome.
But what makes you the most special is that you have become an amazing big brother. Howie looks up to you and trusts you and wants to be just like you. I know in so many ways, it’s quite annoying. I can see how upset you get when he makes his noises instead of words, or throws a fit when things don’t go just right. You’re old enough now to understand that he can’t control those noises or outbursts in the same way that you can. We’ve talked about how his autism affects his daily life, and all of ours. We’re doing our best to help Howie with his coping strategies, but I know sometimes we don’t do enough to help you with yours. Know that I am trying – I am trying not to yell, trying not to get frustrated by the day. I know I need to find activities that we can all do together so that we can better interact as a family, and not ones that pull us apart and do separately.
As Howie gets older, he’s going to look to you for help in his life when he has difficulties or challenges because of his autism. He will do this because of how awesome you are. He will do this because he knows you love him and care about him and you will help keep him safe, just as you already do. That makes you more special than many big brothers, and it’s one of the huge reasons we love you so much.
Happy Birthday sweetie. And next year that seat at Fenway next to you is all mine.
“Will you laugh just like your mother
Will you sigh like your old man
Will some things skip a generation
Like I’ve heard they often can
Are you a poet or a dancer
A devil or a clown
Or a strange new combination of
The things we’ve handed down” – The Things We’ve Handed Down by Marc Cohn
June 6, 2010
We found out last week that my son’s favorite teacher won’t be returning for his last year of preschool.
But I’m not hitting the panic button.
A year ago, I would have been in a total panic. I would have been a wreck, wondering how on earth Howie was going to get through the year without her there. But it’s because of all the amazing work that his teacher has done with him this year that I know things will be just fine.
Let me tell you a little bit about Mrs. M. In the interest of full disclosure, she is my neighbor and also my friend. But our interactions with her started even before we moved here 4 years ago, as she not only helped me enroll Gerry in preschool over the summer, but got him into a “Circle Time” camp at the school with his new teacher, so he would feel more comfortable starting at the new school. The kids that Gerry met in that class have became some of his best friends, and three of the mothers that I met at drop off and pickup are still my closest friends four years later. I’m not sure I want to think about how different mine and Gerry’s life would have been had we not started at that school when we did.
As Howie got older and we started to notice some definite delays in his development, I turned to Mrs. M for advice and help. As a special educator, she had information and resources and perspective. She gave me the words to use with my pediatrician, and was my sounding board after the early intervention evaluation. When the director at the private preschool where I had enrolled Howie when he was 2 1/2 called to say that they wanted to reduce his hours because of his behavior (her words were “he doesn’t have any sensory or processing issues, he’s just a badly behaved boy”) Mrs. M listened as I was almost in tears, helping me realize that they were the ones who were wrong, not me. Mrs. M was the team leader for our school district’s CORE evaluation of Howie when he turned three, and even though he was found to be ineligible for services, the school district enrolled him in her inclusion classroom for the remaining months of the school year when it was clear that he needed some extra help.
Thanks to her teaching style, her fantastic classroom aides, and the physical setup of her classroom (being an inclusion room, there were already accommodations in place in the room and the schedule), Howie did amazingly well for those few months. Summer came and went, however, and the return to school this past year in a class of 16 kids was difficult for Howie. It was clear to us that something was going on with Howie, and even with all the classroom accommodations still in place, he needed more.
I started the paperwork to get him evaluated for autism spectrum disorder, and without hesitation or complaint, Mrs. M filled out every piece of paper required by all the hospitals – some even three times as I tried to get him on three different waiting lists. She made sure all the reports were in order, and when the time finally came for our appointment, Mrs. M came with me to the parent meeting so that we could all be on the same page when it came to Howie’s diagnosis and what he needed for support. In truth, at that meeting, she was my support. Even though we all knew the ASD diagnosis was coming, it was helpful to have another objective set of ears at the appointment, and I left there feeling a sense of comfort and relief knowing that at last we were all going to work to get Howie on track at school.
That was six months ago, and the change in Howie’s behavior both at home and in school has been tremendous. He’s now in the full day special needs program at the preschool with a one-on-one aide, and she worked to design an IEP that is speaks to Howie’s strengths and weaknesses. He’s getting OT and social speech supports in and out of the classroom. She’s come to the house to help us set up activities for Howie when his behavior starts to spiral. Mrs. M worked with the preschool director to create a new classroom setup for next year – a full day inclusion program for kids like Howie, kids who don’t need to be in the special needs program for the whole day, but who still need the extra support and accommodations of an inclusion classroom. And more recently, she’s been my sounding board again as we got Lewis evaluated for his speech delays, reminding me to go with my gut if I think something just isn’t right, just as she did two years ago.
So when I found out that Mrs. M would be moving up to the elementary school to teach the full day inclusion kindergarten class, I could have panicked. The original plan was for her to teach that new classroom setup and be Howie’s teacher again. But as I listened to her talk about her amazing new job, I realized that we were in a great place. While Howie would have a new teacher next year, he would still be at his familiar school, with aides that he knows and kids he recognizes. The transition to a new teacher would be an easier one at the preschool level. The harder transition for him would come in a year – kindergarten is in a different building, with a different schedule, different kids, and a ride on the big yellow school bus. The possibility that Howie could have Mrs. M for kindergarten – the potential for some familiarity in an unfamiliar place – was a huge relief for me.
It’s thanks to Mrs. M that I can feel that relief. I don’t know where we would be without her guidance, compassion, and sense of humor. It’s a testament to her teaching skills that Gerry asked if she’d be teaching third grade so “he could experience what Howie did”. I hope that every kid and family gets to have a teacher like Mrs. M once in their school life. I’m hoping we’ll have her twice!
“Don’t you ever ask them why
If they told you, you would cry
So just look at them and sigh
And know they love you.” – Teach Your Children Well by Crosby, Stills, Nash and Young
June 1, 2010
I am sitting here, report in hand, reviewing the results of Lewis’ evaluation from Early Intervention. I’m having that strange sense of Deja Vu – and it doesn’t feel good.
We’ve had concerns about his speech (or lack there-of) for a few months now, concerns that I expressed at both his 15 month and his 18th month well checks with our pediatrician. At his 15 month check, I told our doctor (who I love) that I was worried that his language wasn’t progressing. He had some sounds, a few partial words, and “Dada” (which, for the record, I do not take personally, although it would it have been so hard for one of my kids’ first real word be MAMMA???) I told her that it was really hard for me to know what was “normal” anymore, since Gerry talked so early and never stopped, and even Howie had some words and sounds at this point. I wasn’t worried about his hearing since he followed directions just fine, responded to his name and clearly understood a lot more than we thought he did. And I wasn’t worried about any of his gross or fine motor skills. At that appointment, she told me to just wait, let’s see how it progresses and we’ll check again at 18 months. Those three months passed by painfully quiet, and at the 18 month appointment she handed me Early Intervention’s number. To misquote Ronald Reagan, I thought “Here we go again.”
The Early Intervention team came out on the day that Lewis turned 19 months, and did the Michigan Early Intervention Developmental Profile with him, a test that takes about an hour to complete. The profile covers everything – fine motor, gross motor, social/emotional interactions, both receptive and expressive language, and a section on self-care. Again, I had this weird sense of having been here before. Exactly two years earlier we were running these same tests with Howie, but with much different answers. Almost every question they asked me, I answered almost the opposite of what I had answered two years prior. Is he able to play away from you for more than 5 minutes? Yes. (but not Howie) Does he vary his play with different toys? Yes. (but now Howie – not even now.) Can he find an object when hidden from view? Yes. (again, not Howie). Can he eat with a spoon independently, build a 6 block tower, draw a circle, and follow new instructions exactly? Yes to all (and no to all with Howie, and some he just started doing this year).
We finally got to the speech/language part of the Michigan, and I told her that I knew he had some emerging sounds and some beginnings of words, but there wasn’t anything past that. By this time I was having a hard time concentrating. Each question and each task they asked him to perform up to this point was like a slap in the head to me. How did I miss all these things two years ago? Had I been paying better attention, would there have been signs that I needed to push for more services earlier on? And how come no one in Early Intervention said anything to me that would have pushed me to get Howie diagnosed earlier? Here I was again, watching this all unfold in my toy room with Lewis, knowing that siblings of children with ASD are more likely to also be on the spectrum, and I wondered if I had the strength to do it all again.
I pulled out every ounce of emotional energy I had to listen to the final part of the testing and hear their preliminary results. Part of me was embarrassed that they were even here, considering how well he was performing on most of the tasks. But the other part of me knew that the speech/language evaluator wasn’t hearing what she wanted to hear from him. She first gave me all his “scores” from the other parts of the tests – social/emotional level was at a 21 month developmental level, cognition was at 19 months, fine motor – 21 months, gross motor – 19 months, self care level was 16 months (but she told me that the Michigan seems to expect that kids are toilet trained by age 2, so we shouldn’t pay too close attention to this number), and receptive language was at a 23 month developmental level.
Then the expressive language. She told me that she was impressed with my grasp on speech/language lingo with my “emerging sounds” classification, and it was clear I knew what was going on. She didn’t hear any polysyllabic sounds from him. He only had a few vowel sounds in his babbling. However, his ability to name one object on request, his use of gestures to communicate, and the fact that he used two words meaningfully scored him at the 15 month level developmentally. In order to be eligible for early intervention services, he needed to have “scored” at the 14 month level. According to the guidelines, he was functioning at a developmentally appropriate level.
My heart sank. For most people, this should have been good news. He wasn’t so far behind that there was a “problem” that needed immediate help. He didn’t qualify for services, isn’t that a good thing? But I had been here before, two years earlier. Howie scored “developmentally appropriate” in all areas too, all on the lower end of the guidelines, but he always had one or two strengths in each category that pushed his score into the “normal” range. The only way we received early intervention services with him was that they picked him up under clinical judgment for his sensory issues, meaning that we know that something is going on but we can’t quite put our finger on it, so we’ll see if OT every other week for six months helps. And I was right there again with Lewis now.
I asked the evaluator about picking Lewis up under clinical judgment. Very honestly, she told me that she could, but because it’s only for a six month time period she thought it better to wait three months to see how or if Lewis’ speech improved. She gave me some very concrete suggestions of what to do to encourage his language skills, and told me to call her just before he turned two to come back to redo just the speech portion of the profile. I think she could sense my frustration, because she promised that she would be the one to come back and gave me her cell phone number to call even before the three months if I thought things were regressing or not progressing at all.
So, again, we play the wait and see game. We’re trying to implement her suggestions and we’re seeing a few improvements. Most of all I have to try not to panic. On the outside, I tell my husband and others that it is what it is, if he doesn’t talk, we’ll just do whatever we have to do to help him. But inside I’m a mess. Wondering if I have the strengths to do this all again. Begging him to just say “car”. Hoping that this isn’t another case of history repeating itself.
“just little bits of history repeating
and I’ve seen it before
and I’ll see it again
yes I’ve seen it before
just little bits of history repeating” – The Propellerheads