It’s the first night of the last day of school.
Howie’s laying in my bed in the dark, watching a show. I’m working on the computer.
“Mom? What age will I go back to Miss P’s class?”
Miss P is – was – his kindergarten teacher.
“You won’t, sweetie.” I replied without turning around. “She only teaches kindergarten and you won’t be in kindergarten again.”
I go back to working.
Five minutes later, I hear quiet crying.
Sobbing.
My kid does not sob. He cries – loud, shrieking, angry cries. But not like this.
I turn around. Howie is crying into his pillow.
“What is it? What is wrong?”
“I forgot to move my chair to first grade. I can’t be in first grade without my chair.” More body shaking sobs.
I crawl into bed next to him. He’s hiding his face in the blankets.
“Your chair? Oh…your special chair. The one with the therabands and the velcro?”
About two months ago, the amazing school OT was revamping Howie’s sensory diet for his classroom. She put therabands around the bottom of his chair so he could kick his legs while doing his work and not hit anyone. She put velcro on the sides of his chair and on his desk so he could rub his hands on it for extra sensory input. That chair made all the difference for him these last weeks of school. He knew that chair helped him.
And in his mind, the chair was staying put in kindergarten when he moved to a new classroom.
“I promise you we’ll get your chair and make sure it’s in your classroom for first grade. I will even make sure it’s there for your summer camp too. Okay? Don’t worry. It will be there for you.”
But then…he went on.
Because it wasn’t just about the chair.
“Why do I have to go to another classroom with a new teacher? I will really miss Miss P. Will Mrs. S be with me in first grade?”
Mrs. S was one of his aides this year. She really understood him and was with him today on his last day.
“And my friends! What about my friends? I will never see them again.”
I assured him that he would. That we could have playdates over the summer to make sure he saw them.
“But it won’t be every Monday, Tuesday, Wednesday, Thursday and Friday.”
Can I just pause for a moment?
In the midst of all this anxiety…as my son is shaking with tears…I see progress.
It’s the double edged sword of the special needs mom.
With this pain…the first glimmer all year of connection to peers. The first time ever expressing and understanding that loss of connection.
I pulled him in close and told him that we’d make sure he’d see his friends as much as possible.
The crying and the questions continued.
“How come none of my friends are with me in my new class?”
I had no good answer for that one, not one that was easily shared. Howie is going into a 1st/2nd grade combined class so there were only so many spots. The other parents would have had to first choose the mixed-level class to start, and then gender and all sorts of other things factor into placement. Plus, he had a hard time with the dynamic of his kindergarten class so having new kids around him made sense. Or so I thought.
“What if I can’t remember all the new kids’ names?”
At this point, I had sent Tim a quick text to come upstairs. I was about to start sobbing myself.
“Mom. I am scared to go to first grade.”
Pausing again to mark the moment. We have hit so many emotions in the past but never this one. Expressed so appropriately and so…painfully.
We talked through the fear. I told him that every year I was afraid to go to school but once I walked into the classroom I was fine.
Tim suggested that we get a class list and meet some of the other kids over the summer so they weren’t new faces in August.
Howie sat up straight. He turned his hand into a talking “puppet” and said, in the most age appropriate mocking voice:
“Hi. I’m Howie. I’m afraid of first grade.”
And he slumped back into the pillow and starting sobbing again.
Progress and pain.
Somehow, Tim got him laughing a few minutes later and he finally calmed down. He smashed his body into mine and asked if I could hug him.
“I love you, sweetie.” I whispered as I do every night.
Every night I get the same “I love you too” scripted response back.
Tonight I got “The same back to you.”
I’m not going to lie. I am wracked with guilt and joy tonight. The guilt, well, that’s obvious. All year long all I saw were the struggles. It was all anyone else saw too. He never mentioned the connections he was making with his teachers or friends, even when asked. I figured many of the “friendships” written about in his communication log were contrived social situations so he could practice his skills. I had asked about playdates but he never mentioned any particular friend. What I never realized was that he was connected to them all – any one could have been a potential good friend. For the past few weeks I have been so focused on just ending this school year and starting fresh. I couldn’t stand to read the communication log one more time. I couldn’t bear one more meeting, one more data sheet of tantrums, one more phone call from the school. All about me. Not once did I stop to think that my little guy would want or need something different.
The joy? The complete and total appropriateness of his reaction. The clarity of his expression of his feelings. His need to talk about it. The fact that it was about his chair but it wasn’t about the chair. It was the worry about missing the things – and people – that helped him the most.
I sent an email tonight to his team at school requesting that his chair be moved into a special room so it would be there for his summer program, and asking if it was possible for him to help move his chair into his new classroom before school started again.
The subject line of the email was “Just One More Thing…”
It’s always just one more thing.
Progress and Pain.

June 16, 2012 at 12:39 am
Now I am sitting here with tears in my eyes…My son’s last day of SpEd Pre-K was a week ago. He has had the same teacher and mostly the same classmates for a year and a half. Our school district has three schools with Special Day classes that are lumped together as K-2… He has been moping the whole week, has regressed to not sleeping by himself, his hands are back in his mouth, and so much more, but they said he didn’t suffer academic regression, so can’t be part of their summer program. We know several of his classmates are moving to Kinder right along with him, but have no idea what school any of the kids, including my son, will be going to. To make matters worse, there is no guarantee that he will even stay at the same school beyond Kinder, as that is how this district works. I can request that he stay with the same group until I’m blue in the face and it won’t make a difference… It sounds to me as though you are quite fortunate in the willingness of your district to work with your guys. We can’t even get OT approved beyond monthly observation/suggestion, even with his Neuro constantly sending paperwork to the school and the Kinder program has no specific ST program unless they deem it necessary… Again, even though his doctors all say he needs help, the district will not provide services…
Sorry this has gotten so long. It just really hit home for me… My son keeps asking for his teacher and his friends and really doesn’t understand that he is moving to a whole new classroom…
June 16, 2012 at 12:45 am
Not long at all. I totally get it…we were in that place too last year with the transition from a sped Pre-k program as well. It’s scary and anxiety producing for us as parents, and it’s so hard when you don’t have the answers for your kids.
I’m sorry you’re struggling to get services for your son. I wish that part wasn’t so hard, considering how difficult everything else can be too. Hoping for a smooth transition for you all. <3
June 16, 2012 at 11:40 am
Kalonni, I promise I’m not the “call a lawyer” type, but it sounds like you need an advocate (maybe a special needs parent who had success in getting services for her/his child) or lawyer to help you get the services your son’s doctor says he needs. Or perhaps you just need to do all of the things that let them know you’re aware of your child’s rights. Have you tried an advocatet yet? I have a friend in special ed law who may have some resources to suggest (books that show you how to prepare all of your IEP paperwork and communications so that you create an effective paper trail that makes it more difficult to deny services without the system risking litigation). In some systems, that’s enough to make them mind their Ps and Qs. In others, an advocate is needed. And in still others, they just won’t budge until a lawyer gets involved. Email me privately at suzbaker@hotmail.com if you want me to get some book titles and website resources for you. I’m in Atlanta and my friend is in Special Ed law in Georgia. But she may have suggestions on how to find a good advocate (or how to have a friend serve that role) in another state. Good luck!
June 16, 2012 at 7:24 pm
Thank you both for listening. Sometimes I wish I had people around who really understood what it is I am dealing with. I think my aunt finally has a better understanding of the angst involved in dealing with the district. After hearing me complain about what I was going through, she went with me to the last IEP meeting and was none too pleased with how we were spoken to… We have an advocate, but the district keeps scheduling last minute meetings which makes it harder for her to come and while I know I can reschedule whenever I want, I really felt this last meeting needed to take place before the last day of school so that my son would be able to say good bye to his teacher and aides for more than just the summer…
June 16, 2012 at 6:33 am
Oh that’s breaking my heart! That progress thing surely is a double edged sword isn’t it!! Yay for Howie though
June 16, 2012 at 7:49 pm
yup. the rollercoaster strikes again.
June 16, 2012 at 6:41 am
I know, I know. But oh my goodness, the way he can express those emotions! The way he includes you in his pain. Amazing. Also, I’d love to see a photo of that chair- that might be just what we need for kindergarten.
June 16, 2012 at 7:18 am
Honestly I haven’t actually seen it. It’s just be described by many people to me. I’ll see if I can get a picture of it.
June 16, 2012 at 7:18 am
just one more thing.
that’s where i am too – there’s always, always just one more thing.
i get every single piece of this. i’m revel with you in the glorious progress and i hold you close in the suffocating pain.
i get it.
i love you.
June 16, 2012 at 7:22 am
I know you get this. And I love you too, for so many reasons but most of all for teaching me to see the joy and hope in some of the hardest moments we face as parents <3
June 16, 2012 at 8:12 am
I am in tears. Oh. my. goodness. All of that amazing progress!!! I hope one day we can get there. I am so hopeful for Howie!
And you, don’t be so hard on yourself…the end of the year is very overwhelming…for everyone. Let all of this wonderful progress sink in…and savor it. Try to leave the guilt behind…as hard as that is to do.
June 16, 2012 at 7:45 pm
We’re working on it
thank you.
June 16, 2012 at 8:34 am
if the chair is heavy you know that his silly best buddy will be there to help him move it….one PLUS is that they will be spending some time together for the next two years!! xoxoxo um so will WE . yippee.
June 16, 2012 at 7:45 pm
I reminded him of that a hundred times last night and I know that will makes things better. As it will for me. Their teachers may not agree
June 16, 2012 at 8:55 am
I just want to give you both a hug right now. Change is so hard for us all. As a child, I could never sleep before the first day of school. My son will spend about the first half of any new situation either running around the perimeter of the group talking to himself or obsessively asking us the same questions over and over. Thanks for writing!
June 16, 2012 at 7:47 pm
I’ll be really interested to see how his summer transition goes and if this was the anxiety spike or if it comes again in August. I’m with you – I was the same way! Thanks for reading!
June 16, 2012 at 9:42 am
Dear A,
I keep hoping I will run into you on my way to or from school. I look like a stalker. If you saw me driving by I’m always slowing down and looking out my window for you. Your house always looks like I just missed you with chairs and bikes all about – just what a house should look like. Mine currently has broken water balloons and balls strewn about but we haven’t been outside for quite some time. Anyway, I have wanted to tell you two things. First, I love your blog. I just found out about it several ago and it is inspirational. Life changing, really. I kept an online carepage when my son (uh, let’s call him Elvis as his handwriting is so messy that’s what it looks like he spells) had cancer. It was similar to yours (but yours is clearly in a different league entirely) as I recounted experiences, wrote poems, changed words of songs and the infamous ‘quotes’ of people who sometimes really ‘got it’ and from others who clearly did not. Reading your blog brings back a lot of memories for me and also opens my eyes to families like yours. It’s also quite different in that your journey is so different. Have you read the piece about going to Holland when you were expecting to go to Italy? I’m sure that applies except you might have had an entire relocation package in your unexpected trip. Suffice to say, your blog is making a difference. The second thing I wanted to tell you is a short dinnertime conversation. My son, Elvis, is in Student Council so he helped out with the kindergarten field day. When I asked him about his day that day, he said it was awesome and he met the coolest kid at his station (freeze/refreeze). His name was Howie and he was so fun. When they were done with field day, they hugged each other. Howie made Elvis’s day. Thank you. Howie, you are making a difference as well.
I miss that little guy . . . Howie I mean, not Elvis (he still needs to clean up those water balloons!)
Love, Wanda
June 16, 2012 at 7:49 pm
Oh…that just made my day. We miss you terribly and found the car you made for him when school ended two years ago. Feels like a lifetime yet also almost like yesterday. I know you get this all so much, and I want you to know that I always felt like you got my kid right from the get-go. You are a difference maker in people’s lives. Not just for their kids.
Stop by whenever. We are always home. The bikes and the chairs are permanently out there out of laziness
June 16, 2012 at 10:14 am
Oof. So, so hard to read and not reach through the Internet to hug you both. I think this is the bitter and the sweet at its most extreme. Here is hoping that the summer brings even more progress, more connections…and more seeing beyond the fears. For both of you. Love you. Xoxoxo
June 16, 2012 at 7:49 pm
Love you too. Thank you
June 16, 2012 at 10:28 pm
oh… yes, there’s always something. always a reason to rejoice, celebrate and be encouraged. and that same reason can break your hearts. our dear little ones feel so very much.
the plan to meet some of the kids in his 1st grade class over the summer is a good one!
his language is beautiful, A.
June 16, 2012 at 10:42 pm
My little guy (also “on the spectrum”) just finished kindergarten, too. He was sad for a couple weeks preceding the last day of school. On the last day, I took pictures of him with his teacher and aide. My son asked me if we could put them in a photo album. So we put together a photo book of about a dozen pictures from the year. He was so excited for it to come in the mail. When it finally came, he had a huge smile on his face.