Every special needs parent knows that there are times when you have to step in and advocate for your child.
Sometimes, it’s at a parent/teacher conference. Sometimes it’s an IEP meeting. Sometimes it’s on the sidelines at a sporting event.
Before our kids have a voice or can advocate for themselves, we have to be the ones to speak up and help others learn how to help our children.
I did just that today.
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I had asked for this meeting with Howie’s teacher and his two aides. It wasn’t a demand but more of a “I need to come in.” It was becoming clear that they were having trouble understanding Howie’s sensory processing disorder and how it manifests itself at school. He was having more outbursts, more meltdowns and new physical aggressions – things we hadn’t seen in over two years. I needed to go in and help them understand my child.
I was nervous. I’ve never done anything like this before. They “knew” autism, but I had to explain SPD in a way that they would get him.
I read MOM-NOS’ post “A Hair-dryer Kid in a Toaster-brained World” three times while working on my presentation. It’s my go-to post always when trying to explain Howie’s brain. I knew if I could explain Howie’s SPD half as well as MOM-NOS explained autism, I would be in good shape.
I searched my brain for an analogy like hers. And it finally came to me.
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I met with the special education teacher and the two aides on a cold rainy morning. The four of sat in a small office, and I handed them my powerpoint presentation.
“My goal here,” I said, “is to help you understand Howie and how his body works, so that you can help him understand how his body works. Especially in the classroom.”
My presentation was titled: “All About Me and My SPD”.
I gave them a quick definition of what SPD is: a neurological disorder that causes a virtual traffic jam in the brain. I explained how it’s like autism in that way, but SPD is more about how the brain interprets the information from our senses. When it gets mixed up, it can cause a child to behave inappropriately.
I talked about sensory seekers and avoiders. I asked them to think about their responses in certain places. Do you like crowds? Heavy blankets for sleeping at night? Do you get nervous around lots of noises? Are you easily overwhelmed? I shared my fear of stores like Costco and Wal-Mart – how just being in those places made me so uncomfortable that I choose not to shop there.
I told them that Howie was both a seeker and an avoider. That we describe him as “being uncomfortable in his own skin”. And his aide gasped a little.
I made sure they knew that Howie has had these issues since birth. How I knew from Day 2 in the hospital that he was different because of his non-stop crying. That he wouldn’t sleep without touching someone. Stage 3 baby foods made him gag. He cried at loud noises and had no sense of space. He asked for hugs all the time – not out of love but out of desperation. He couldn’t sit still without moving and would run laps inside our house for hours. I told them he didn’t sleep through the night until he was four.
And again, they gasped a little.
We talked about his duel diagnosis of sensory processing disorder and autism spectrum disorder and how they work hand in hand. If you understand why Howie feels like he does, then you can understand why he behaves like he does. And I reminded them that we’ve worked with several occupational therapists to get to fine tune his therapy. This was not stuff that we made up.
We discussed the eight senses – sight, smell, taste, touch, hearing, vestibular, proprioceptive and the introceptive sense. I explained what each one was and Howie’s reaction to it all. We talked about that he never gets dizzy, how eating is hard for him, and how he drinks juice constantly to feel “full”.
And then, it was time to help them help him.
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I called the slide “What Does Howie Need for Success in School?”
•Think about how you interact with your car
–Before going on a trip, you fill up the tank with gas, check the oil, make sure everything you need is in the car
–Along the way, you fill up the tank as needed. You are proactive in making sure it doesn’t run out of gas
.–You monitor the warning lights but rely on the car’s computer to alert you when things are awry.
–You enjoy the ride but are always alert for a detour or a change in course
–You respect the path and know that it’s a journey, not a quick trip to your destination.
“We know Howie’s favorite thing is Hot Wheels Cars, right?” I said. “So let’s think of him like a car.”
•He needs to fill that tank.
–The mandatory tune-up in the classroom helps him fill his sensory tank for morning work
–For the rest of the day, sensory breaks should be “as needed” and not at set times-If he doesn’t need the break at that moment, he will protest. It will “overfill” his tank and not help him.
-We need to teach him to self-regulate and advocate for when he doesn’t feel “right”. He needs to be able to say “I need a break” and get one, even if it’s not at the designated time. If he’s told to wait, he cannot focus on anything but how uncomfortable his body feels. He will fidget, loudly protest, or not be able to sit. You will see an increase in non-compliance.
-As he gets older, he will get better at figuring out appropriate self-regulation in the classroom. But right now, he needs help. It may be simple as a something in his hands, or a little squeeze, or some heavy lifting in the corner. It may mean a walk outside, through the halls, or 100 jumps on the trampoline
.-You will learn his “warning lights” – his body moves quickly, or his voice gets agitated, or he starts in on uncontrolled nonsense talk. These are his “stims”. If spotted quickly, they can be diffused and redirected. If ignored, they will escalate quickly to more challenging behavior. His “engine” will rev up quickly. He’s familiar with the “How Does Your Engine Run” program. Using visuals help him understand where his body is at the moment, and helps divert his attention.
-If we listen to his internal “computer”, he will learn how to take care of himself more quickly and spend more time in the classroom with his peers. His greatest asset is his language. He is his best advocate. If he feels like he’s heard, he can also listen and be reasoned with. If he is feeling challenged, he will not back down. There’s detective work to determine if he’s trying to get out of doing something or if he’s out of sorts. He’s not hard to read. Just listen to his words and body.
•He needs to fill the tank without being removed from the classroom as much as possible
–Whenever he can, he needs those sensory breaks to be on the spot and not removed from his peers. He knows that he’s missing things, even if they seem to come at “undetectable” intervals. A sensory area in the classroom or at his table or cubby will help him self-regulate because he can reach for these things easily. These sensory areas can help every kid in the room.
–Positive and immediate reinforcement are the keys to his successes. The better he feels about himself, the better he’ll sit, the better about himself he’ll feel, etc.
•Enjoy the ride. Watch for detours
–Howie is an incredibly bright, funny, and sweet kid. His laugh is infectious. He will take you on the most magical ride this year. If you listen and get to know him, he will wow you, impress you, and make you incredibly proud. In that little body is a big kid waiting to get out.
–Our job as parents and his teachers is to help him show the world the amazing big kid in there. Our goal always has to be helping Howie with his interfering behaviors so that he can be among his peers. But our goal also has to be respecting his “quirks” and his differences, and helping him feel proud of the things that make him who he is.
–As his parents, we will always alert you as to the detours that may throw him off course for the day. A rough night sleep, illness, a fall…these are all things that can throw Howie for a loop during the school day. They may seem small to us, but they can affect his whole day. He cannot get “past things” like we can. A little argument in the morning, or losing his “earn” immediately…those will affect his day. We are always making slight corrections or changes to our approach with him. Pre-teachings, warnings…we all need to be three steps ahead of where he will be to help his body and his brain connect.
–He’s a one of a kind kid that doesn’t fit any mold. A first (and only) edition. Traditional strict ABA methods will not always work with him. In many cases, his sensory issues need to be addressed first. Fill up his tank, and the behavior methods will fall into place. If he’s left empty or is overflowing, his behavior plan will fall apart. It’s a long journey with lots of ups and downs. But he will get there if you let him.
–We are constantly thinking on the fly and out of the box for Howie. When we do that, he cruises down the road like a finely tuned machine. Sit back and enjoy the ride.
And finally, I gave suggestions for “filling his tank”:
•In the classroom
–Circle time: something in his hands (tiny car, koosh ball, etc)
–Bean bag chairs for quiet reading time
–“jobs” to help with sensory inputs (stacking chairs, carrying containers of toys, cleaning the board)
–Headphones during work time
•Out of the classroom (when needed)
–Walks down the hall (delivering notes to the office, etc.)
–Jumps on the trampoline
–Walk outside around the building
I concluded the presentation with a list of books and resources for them, with the strong reminder that Tim and I are their best resource. Use us. We have been living with this for 5 1/2 years.
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We talked for a while about immediate changes to his schedule. No more mandatory breaks at scheduled times, with the exception of the one first thing in the morning. They needed to be on demand and honored. We talked about the need to listen to his words and watch his body. And we shared that he is already becoming very self-aware – knowing that he needs putty at circle time to help him focus and “jobs” to make him feel proud and accomplished. His aides said that they are encouraging his classroom teacher to call on him more, that just because he’s not looking her in the eye when she’s teaching, it doesn’t mean he’s not attending.
I stood up to leave and the special education teacher said to me:
“Thank you. I see your child in a whole new light now.”
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There comes that time when we need to take a moment and step in for our children. No one else will do it for us. I believe in my son. I know he will move mountains if he’s given the opportunity to try. I needed his teachers to see what he could do when he is feeling like Howie.
I know in my heart they will get it.
And if they don’t, I’ll be right back there again leading the way. I believe in me too.
hand in hand
“Try what you need to try, No one should question why, Believe in yourself, Believe in yourself.
Folks may say you’re different, That you’ve gone and lost your senses, But the world is yours to walk in, Go ahead and leap the fences.
And you’ll see, Believe in yourself And the world belongs to you and me” – Believe in Yourself from Sesame Street (performed by N’Sync)
These three years have been a blur for me. He spent the first few months of his tiny life dragged from evaluation to evaluation for his older brother. The revolving door of therapists in our house is not an anomaly, but a normal way of life.
And now they come for him too.
The mommy guilt around the third child is tremendous. We have photos – I know we do. But they aren’t up. Or out. They are in file folders on various computers and memory cards.
I even forgot to order his birthday cake on time this week because I was dealing with a crisis with his brother.
But…
The best birthday gift to me came this morning.
Tim put two birthday hats on his head. Lewis started to laugh. And said:
“Mom! Daddy has two party hats on his head!”
Clear as a bell. A full complete sentence. Correct use of sentence structure. Spontaneous and unprompted.
His IEP is set. We have a wonderful plan in place to keep this progress going. His speech sessions start Monday. I see nothing but a bright future for him.
It’s all good from here. This year will be magical. It has to be.
Happy Birthday to my little buddy. Let’s go have some cake.
Did someone say cake?
“Three is a magic number, Yes it is, it’s a magic number. Somewhere in the ancient, mystic trinity You get three as a magic number.
The past and the present and the future. Faith and Hope and Charity, The heart and the brain and the body Give you three as a magic number.” – Three is a Magic Number from SchoolHouse Rock
I was sitting on the floor of our living room, listening to some music. The song “Wonder” by Natalie Merchant came over the speakers and I began to sing along. When I hit the words:
O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
I started to cry.
It had been a challenging morning, to say the least. I don’t know if the kids were out of sorts because I had been away, or if maybe I was the one out-of-sync. But Howie was up at 5am and had been verbally stimming and non-compliant all morning. He refused to get dressed/put on his coat/get in the van. Lewis woke up shortly after Howie left, and the pattern continued. Wouldn’t eat, wouldn’t get dressed. No coat, no car. We were 10 minutes late for preschool and I left him screaming outside his classroom with the teacher, still refusing to hang up his backpack.
The ugly cry was my company on the way home.
I had finally pulled it together enough to make myself coffee, eat an entire row of cinnamon rolls, shower, and get back for preschool pickup.
At home twenty minutes later, the song came on.
I was sitting on the floor, glasses off, crying.
“Why you glasses out?”
Lewis had come around the corner, a pile of Hot Wheels cars in his hand. I quickly tried to wipe away the tears.
“What’s that?”
He was pointing to one stray tear coming down my cheek.
“I will wipe it. I get paper towel.”
He went into the kitchen and grabbed a whole roll of paper towels, ripping off several sheets.
Gently, he touched my cheek.
“There. Alllll better.”
And it was.
I have a week that includes a special education parent advisory meeting tonight, Lewis’ first IEP meeting at 9am tomorrow morning, his 3 year old checkup an hour later, and our first monthly kindergarten parent/teacher meeting for Howie directly after that. Wednesday the kids have no school. Thursday we meet with a psychologist to determine what, if any, testing we need to do with Gerry.
Friday is Lewis’ third birthday. And if you have a kid with special needs, you know what that milestone means. No more early intervention. Fully in the hands of the school system. No more wondering if this is a phase that you won’t have to share. It’s real.
But that simple gesture of wiping my tears…
Reminded me of why this week is so important.
My kids need me to be their best advocate this week so that in turn they can show the world the wonders that I see here at home.
My kids – all three – are counting on me. That takes the sad right out of me.
“It’s all right to cry Crying gets the sad out of you It’s all right to cry It might make you feel better
Raindrops from your eyes Washing all the mad out of you Raindrops from your eyes It’s gonna make you feel better.” – It’s All Right To Cry by Rosey Grier (from Free To Be You And Me)
Yesterday afternoon, he came flying out of his seat on the van as I opened the door.
“Mom! Mom! I got an invitation! I got an invitation! Do you want to see?” He started fumbling with his backpack in the aisle of the van.
“Can we wait a moment to get out?”, I asked. “Say goodbye to your friends.”
“I got an invitation!”
As we got out of the van, one of his old preschool teachers drove by.
“Howie, say hi to Mrs. L!”
“I got an invitation!”
This repeated when he got inside and saw Lewis and again when Gerry got home. Together, we sat down and read the note.
Come to Jack’s birthday party. Bowling. October 22nd from 11:30-1:30
His first kindergarten birthday invitation. For a kid we don’t know. Yes, I’m sure the whole class was invited, but still…huge.
Howie jumped around so excited.
“Do they have Hot Wheels bowling shoes?”
“I got an invitation! I got an invitation!”
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This morning, Howie asked if he could send Jack a message. “For his party,” he said. “I want to tell him that I am coming.”
I told him that when he got home from school, we could send an e-mail message to him.
Little did I know, Howie meant that HE would send the message. As in, type it himself.
We sat down at the computer. I gave Lewis the iPad so that my focus could be on Howie.
“Are you sure you don’t want me to type it?”, I asked.
“NO! I’m going to. Now tell me the letters. I want to write ‘Dear Jack’.”
So we started. “First letter is D.”
“D…d…d…d…where is d…”
“E…e…e..e…where is e…”
“I need to go poop.”
“A…a…a…where is a…I want to make it uppercase…”
Get the picture?
I would respond with “The ‘I’ is on top.” And “You have to hold down shift and the letter together to make it uppercase.” And “The letter ‘T’ is in the top row, not out the window.”
45 minutes later, we had this:
DeAr JacK
I wouLd AppreciatE it come to yoUr BYRTHdAy party.
from Howie (sic)
“Can we send it now? How does the computer know how to get it to Jack?”
“That’s a great question for your dad. Let’s send it.”
Now I’ll admit that I surreptitiously cleaned it up a little so that it didn’t look like a ransom note. But I left the words intact. Along with a note to Jack’s mom that Howie wanted to write the words himself.
I’m pretty proud of him for this. He got the whole connection between getting the invitation and telling Jack that he wanted to come. And while it took forever for him to actually type it, he did.
He’s come a long way, baby.
Now to just get through the two weeks until the party.
“(Why don’t you check it and see one more time for me, you gotta) Wait a minute Wait a minute Wait a minute Wait a minute (Mister Postman) Mister Postman, look and see
(C’mon deliver the letter, the sooner the better) Mister Postman” – Please Mr. Postman by The Marvelettes
And a very happy 10th anniversary to my amazing husband. You make every day better and give me the strength to get out bed in the morning. Because of you, days like this are possible. Thank you.
That’s how long Lewis has been working with his speech therapist through Early Intervention.
Their last appointment is coming Wednesday. He’s turning three in two weeks.
When they started, his delay was quite noticeable. I could understand about 50% of what he said. Others…not so much. Getting services for him was a delicate dance – the SLP had been in at 18 months. Then 2 years old. Then finally again at 2 1/2 years old.
In June, two word sentences were hard to understand. He could label, but not complete phrases. Many consonant sounds were missing. No subject-verb configurations. And as their sessions went on, other things became apparent. Limited play skills. No eye contact. Difficulty maintaining attention. That all brought us to August and our developmental evaluation and the eventual PDD-NOS diagnosis.
Even in that August appointment, the gap between his receptive and expressive language was quiet apparent, as they noted several times throughout the report.
I took this video yesterday. Four months after therapy.
A “what” question in “What Mommy?”. An “I” statement in “I swimming” and “I can’t swim”. A conversation “Because it’s broken”.
Pretend play with goggles, swimming on the blue rug.
I showed this and another video to his speech therapist. She was shocked. And happy. And a little teary.
As was I.
My son is a perfect example of how a little bit of early help can go a long way. We are so grateful. And so proud of all his hard work to get there.
Now we have a lot of happy talk in our house. His voice is music to my ears.
“Happy talkin’ talkin Happy talk Talk about things you’d like to do You’ve got to have a dream If you don’t have a dream How you gonna make a dream come true ” – Happy Talk from the musical South Pacific
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Side note: I took this video and many others on our iPad. I truly believe that our iPad aided in my son’s success in learning appropriate speech patterns. He’s a whiz on the iPad and thanks to apps like “Speech With Milo”, “AlphaTots” and others like those, he learned sentence structure and letter sounds in a way that made sense to him. I’m saddened by the loss of Steve Jobs for many reasons, but the impact he had on the special needs community is immeasurable. On a personal note, he died too young from the same cancer that also took my dad too young. Just as I am grateful for the 13 months post-diagnosis that we had with my dad, I join with the world in being grateful for the years post-diagnosis we had with Steve Jobs. This family thanks you for your vision and for your faith in your products that changed an entire community.
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