In This Moment

(editor’s note: yes, another post about saying goodbye to an integral member of our team and life.  I have more to write about on other things…the words just aren’t flowing yet.)

Dear Mrs. T,

I don’t know where to start to say goodbye and thank you for all that you’ve done for our family.  I couldn’t even say hello to you last time I saw you without crying…not once but twice.

I guess like all things, I’ll start at the beginning.

You remember how we first met? Howie was turning three. He had been in early intervention for occupational therapy under “clinical judgment” for sensory processing issues but did not yet have his autism diagnosis. You went into the private daycare that he was attending to evaluate him to see if he would qualify for services at our public preschool. Remember how he was on the verge of being kicked out of that daycare? After you went to see him there, we sat around a very small table at the preschool and we discussed Howie’s eligibility for special education services. While he didn’t qualify at the time, the preschool team all agreed to let Howie start at the public preschool that March so you could keep an eye on him.

And keep an eye on him you did. You had me fill out the “Dunn Sensory Profile” and for the first time I was able to see quantitatively his sensory needs and differences. Questions like “does your child hug too tightly” or “does your child spin” were now indicators of sensory processing issues and not random unexplained things that my child did. You taught me words like “proprioceptive” and “vestibular” and explained to me what a sensory diet was in terms that I could understand. You consulted with Howie’s preschool teachers as we tried to figure out what was going on with him. This wasn’t something special that you did just for us. This was just what you do.

Remember when Howie did get his autism diagnosis at age 3 ½? That now we had a place to start with an IEP and goals and ways to help him? You were right there at his first IEP meeting to bring him on for direct services for fine motor work as well as a consult for all things sensory for him in the classroom. You gave me ideas for equipment and exercises that we could do at home to help him regulate. You introduced him – and me – to the How Does Your Engine run program and worked with him on his handwriting, his tune ups, and classroom fidgets. You were always willing to try new things and look at his programming from a sensory perspective, and never once dismissed an idea that we had to help him.

The incredible wealth of knowledge and experience that you bring to the table when working with a student and their family is extraordinary and we benefited from that immediately. You never once looked at the “autism” label and implemented a cookie cutter OT program around that label. I didn’t know it at the time, but I know now how seamlessly you worked with the whole preschool team to teach self-regulation, handwriting without tears, and fine motor skills.  You were part of my oldest son Gerry’s preschool programming and I didn’t even know it.

With your wealth of knowledge and experience comes this incredible way of predicting the future needs and successes for children. Remember when Howie “graduated” from direct service with you in kindergarten?  Remember how I panicked? You called me and reassured me that he was ready and you wouldn’t take him off your caseload if you didn’t believe that to be true.

Sure enough, Howie’s handwriting is better than everyone else in the family. You just knew he could do it.  You believed in his abilities when so many others did not.

With the reassurance that he was ready to come of your direct caseload, you promised that you would stay on as a consult for his sensory diet. You created specific sensory and self regulation/advocacy goals for him in his IEP. At this point in time, Howie was having a particularly hard time not only with sensory overload at school, but with learning what tools could help him “feel better”. You called me to say you were creating a sensory tool box for him to have in his classroom and asked for my input into what should be in there. You worked with me, his teachers and his aides to help teach Howie what he needed and how to ask for it. You never let him flounder.  You were always there to make sure he got what he needed to make it through the day.

I remember so clearly one IEP meeting when Howie was in first grade. I expressed my sadness and worry over his struggles and his inability to figure out what he needed. “Just wait until he’s 8 or 9 years old,” you said. “You will see tremendous growth not just in understanding and coping with his environment, but also in his ability to ask for what he needs to cope with that environment.” You were absolutely right. At our third grade IEP meeting, most of his self advocacy goals had been met.

You never said “I told you so” at that meeting, but I know you were thinking it with a smile.

And now here we are.  Your retirement.

You have been with us from preschool through the start of this year in fourth grade. You have watched my child grow in ways I never could have predicted (but you did).  You listened to every single concern I had along the way and addressed them.

Your institutional knowledge of my child has been instrumental in his successes and in helping him get the accommodations and services he needs in the classroom.

Your kind and gentle manner has guided him and me through the darkest of times.

You saw things in him that no one else did.  You changed his classroom to fit him and never once asked him to change to fit his environment.

You taught his teachers what his movements and mannerisms and outbursts were trying to tell them.  You believed that behavior is communication and you looked at his world through his eyes to see how to help him.

Everything that I now understand about sensory processing issues and autism, I know because I learned it from you.

I am grateful every day for what you taught Howie, his teachers, and our family about our sensory issues.

And I thank you for helping us embrace and not fight his unique way of interpreting his world.

Have a wonderful next chapter as you head off into retirement.  You will be missed, but never forgotten.

Love, Alysia

“No matter where I go

Every time I look back on this road

You’ll always be a part of who I am

Everything I’ve known

Every seed of greatness you have sown

Through good and bad

Your love has watched me grow” – In This Moment by KC Gan and Alison Yap

 

Put Yourself In My Shoes

“For my son, throwing up is the ultimate horror show of sensory overload.  He’ll avoid it at all costs…actually preferring to swallow it than throw it up.” – A conversation I had with a friend when my son was sick

Dear American Academy of Pediatrics-

I’d like to take this opportunity to respond to your position paper on Sensory Processing Disorder and its inclusion in the new DSM-V (Diagnostic and Statistical Manual of Mental Disorders).

I meant to write to you that night when the paper came out.  I read all the media coverage.  The articles with headlines like “Doubt Cast on Usefulness of ‘Sensory’ Therapies for Autism“, with quotes like “there isn’t much evidence that such therapies actually work” and “some other issue could underlie their reactions to stimuli, such as a behavioral issue.”

I read all this and I was angry.  How dare you? I thought.  We’ve been living with sensory processing disorder for over six years now.  Do you? How do you know?

I took the time to read your actual position paper.  I cooled off a little.  I needed some time to think before I could share how I felt.

But I’m not going to respond as a writer with interviews and counterpoints.  My friend Brenda did an amazing job of that with her post at The Thinking Person’s Guide to Autism.  I hope you read it.

Instead, I’m simply going to respond as a parent.

I’ll admit it.  I had no idea what sensory processing disorder was until about 4 years ago.  All I knew was there was something going on in my son’s body that I couldn’t figure out.  Back then, we called it “not comfortable in his own skin.”  He couldn’t sleep without touching me and would wake up every 45 minutes.  He wouldn’t eat anything with chunks.  Smells and noises threw him for a loop.  He wouldn’t want to be touched, yet he would smash his body into me and everything around him.  He couldn’t handle the world around him.

We called our pediatrician.  She told us to call early intervention.  We filled out the Dunn Sensory Profile.

It was the first time I cried as a parent over a form.  The questions kicked me in the gut.  It was clear that my son had “definite differences” in many areas.

We qualified for early intervention for occupational therapy for his sensory issues.  Once a week, the OT came to visit.  She would have him carry heavy balls around and knock down towers.  She put him in a body sock and sang songs to him.  She created obstacle courses and did joint compressions.  She “brushed” him.

I’ll admit it again.  At first I thought…what the heck is this?  How could this help?

But it did.  My son was calmer after his sessions with his OT.  Some therapies worked better than others.  We did what worked and stopped when it didn’t.

In preschool, he had a very set routine with the school OT for a in-school sensory diet that consisted of before school “tune-ups”, and many sensory breaks as needed throughout the day which included walks, jumps on the trampoline, and swinging in the therapy swing. We also had a routine at home. The school sensory diet piece got dropped at the beginning of his kindergarten year – or perhaps more precisely, the need for this sensory diet was not as understood at the kindergarten level – and we had quite a downward spiral in behavior in the classroom and at home. Now, with the guidance of the school OT, my son has a much better prescribed sensory diet in the classroom in conjunction with his behavior plan, and he’s doing much better.

Now, I’ll tell you, American Academy of Pediatrics, in reading the actual paper, there are some interesting pieces in there. One piece is is making pediatricians more aware of sensory issues, and encouraging parents to delve deeper into the route causes of the sensory overload. For many parents, like me, I noticed the sensory stuff WAY before any of the signs of autism spectrum disorder. I believe that any conversation about this between parents and doctors is a positive step, and you’re asking pediatricians to have frequent follow up appointments with parents who are doing sensory integration therapies. Stemming from this, I am also happy to see the idea of telling parents that it’s okay if one therapy isn’t working and to stop it and perhaps try something else.

But…

I know plenty of parents desperate for help and recognition of these sensory assaults who get dismissed by their doctors, or perhaps given an alternative diagnosis that doesn’t really fit their kid but allows them access to services. I wish you had told doctors to refer parents to a qualified occupational therapist for help with the sensory therapies, so that parents aren’t out there trying things on their own with no guidance. The two professions should be working together for the good of the individual child.

I have three boys, different as morning, noon and night.  My oldest definitely has sensory issues.  Hates certain clothes, incredibly picky eater, smells throw him over the edge, can’t stand noisy places. But no diagnosis.  My youngest?  Has the PDD-NOS diagnosis, but his sensory issues are almost zero.  No different from mine.

But my middle guy?  The one I’ve been writing about here?  The one with both the SPD and PDD-NOS diagnosis?

I firmly believe that my son’s sensory “fight or flight” reactions are the driving force behind all that he does. His inability to process his world is his biggest issue. Social skills issues, his hyper-focus, his sleep troubles – all sensory. I can say is that the therapies devised by our OT have worked for my son in helping him organize his body and thoughts.

I’d like you, the American Academy of Pediatrics, to spend just one day in my house.  Then perhaps, spend an evening with another child who has SPD.  And then, talk with an adult with sensory sensitivities. Just like every autistic person is different, sensory issues present themselves differently in every person as well.

I can tell you that it is real.  For my son, it is his reality twenty-four hours a day, seven days a week.

As his parent, it is my reality too.

Perhaps, AAP, we should shift our mindset away from phrases like “treatments that work” and focused more on “therapies that help”.

I can NOT behavior therapy away his SPD.

My child and thousands like him need access to the sensory tools that will help him cope.

I think that SPD should be a stand alone diagnosis.

Put yourself in his shoes for just one day.  Please.

Let’s keep talking about this.  I have a feeling that soon you’ll change your mind.

How can you resist this face?

Sincerely,

Alysia

“Your mind is made up you won’t even try
You didn’t even cry this time
You say that we could never see eye to eye
And one of us just must be blind

We have our differences
We’re still the same
See what we want to see
But you take a second look
And maybe things wouldn’t seem the same
If you could see what you mean to me” – Put Yourself In My Shoes by Clint Black

From the SPD Foundation: “Your voice is needed NOW to say that SPD does exist and that many are suffering. Research on SPD already exists, more than enough for inclusion as “a new category that needs additional research”!

Act NOW!  The final deadline to show informed support for the inclusion of SPD in the revised Diagnostic and Statistical Manual (DSM-5) is June 15, 2012.”

Click HERE for more information

 

Free To Be You And Me

notes from an Open Sensory Gym afternoon…

The boy sat in the giant red swing.  It was in the center of the room, swaying back and forth on the rope attached to the high ceiling. His mother (grandmother? caregiver?) pushed him back and forth.

“This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

The boy jumped out of the swing and went up to each adult in the room.

“This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

An hour passed.  He went from swing to trampoline to scooter board to crash pad.

“This is a leap year,” he said. “There are 366 days in this year. Every four years is a leap year. Do you know what this year is? It’s a leap year. How many Wednesdays are in this month? Did you know that this is a leap year? There are 29 days in February this year. It’s a leap year.”

My friend and I answered him each time.  Of course we did.

His mother (grandmother? caregiver?) started to yell at him.  “STOP Adam STOP!” she yelled from across the room. She looked embarrassed.  Or weary.  Or both.

It made me sad.  If there was any place that this would be fine – and understood – it would be in this gym.  He wasn’t bothering anyone.  Why tell him to stop?

Was it out of habit?  Or was she truly worried about what we thought?

I wanted to tell her it was okay.  That he could just “be” here.  But I didn’t. I don’t know why.

**********

After checking out most of the equipment in the gym, Howie gravitated towards a large purple therapy swing that was full of balls.  He climbed right in, zipped himself up and asked me to swing him around.  “Faster! Faster!” he yelled to me.  In a place like this, I could give in to his need to spin, spin, spin.

A little boy came over and helped me push Howie around.  Howie squealed with delight.  The boy introduced himself as Zachary and they ran off to play together.  Really play.  They climbed up on the crash pad and pretended they were jumping out of airplanes.  They sat together in the giant tires and pretended they were in spaceships.  As they ran from thing to thing I struck up a conversation with his dad.

“How old is he?” I asked.

“Five and a half.” he replied

“Oh, Howie is too.  Well, he’ll be six in March.”

The dad paused for a moment, looking intently at Howie.  “He’s not autistic, is he?”

I was totally taken aback.  Isn’t that why we’re all here?  “Yes, yes he is.” I say.

“Oh, wow.  But…he talks so well! I assumed he was here with a sibling, like Zachary is here with his younger brothers.  His twin brothers are four.  They aren’t talking…yet.” His voice trailed off.

I told him Howie had a diagnosis of PDD-NOS.  He looked at me like I had three heads.  “It’s part of the autism spectrum.” I replied.

It struck me that even within our own community not everyone understands that it’s a spectrum.

We talked some more about how tough it is for Zachary to be at home with his brothers.  They come to the sensory gym so that all three boys have a place that’s safe for them to play together.

“It’s so hard for him,” the dad said. “I guess he’ll grow up faster and learn more about life than other kids.”

We watched as the boys ran off together again laughing.

I had assumed that Zachary was on the spectrum.  His dad had assumed the opposite about Howie. 

I wanted to connect with this family of three boys.  I wanted help spread awareness of a different kind.  But I didn’t. I don’t know why.

**********

Someday, I will buy a “squeeze machine”.  So I can see this happy face all. the. time.

**********

I am very grateful to our local Autism Alliance center that opens its hearts and pockets to provide these sensory gyms during the winter months.   This is how we’ve spent our last two Sundays.  The equipment is familiar to my son from school.  But most importantly, he is free to choose what he wants to do and what he needs to do in that moment.  And both weekends, he has made new friends.

Can I say that again?  My five-year-old kid with deficits in social skills and pragmatic language made new friends.  You don’t have to have your degree in special education to understand why.

He’s comfortable.  He’s happy.  He’s safe.  He’s around people who are letting him be.

He’s free to be himself.

If only we adults could learn from that.

“Every boy in this land grows to be his own man
In this land, every girl grows to be her own woman
Take my hand, come with me where the children are free
Come with me, take my hand, and we’ll run

To a land where the river runs free
To a land through the green country
To a land to a shining sea
To a land where the horses run free
To a land where the children are free
And you and me are free to be
And you and me are free to be
And you and me are free to be you and me” – Free To Be You And Me soundtrack

 

We Can Work It Out

(note: I was tagged and asked to contribute to an IEP meme on Solodialgue – a way of sharing our experiences and knowledge of the process.  She’s an amazing writer and our kids are a lot alike, so I couldn’t say no. Here’s my contribution.)

I was out for drinks the other night with some friends.  And as much as we tried to talk about ourselves, the conversation floated back around to our kids.

I had just had our annual IEP meeting for Howie.  We were also going through his 3 year evaluation as well.

I told my friends about the meeting and about how I thought it went really well.  The discussion around the table was about how to make things work for Howie in school in a truly individualized way.  The actual definition of an Individualized Education Plan.  I went through the ins and outs of our new plan, why we made the changes we did, and how I feel like we’re all in a good position now to help Howie move forward.

“You made that happen.” my friend said.  I was a little startled, not quite knowing what she meant.

“It’s because you came to the table in a respectful and smart way.  You advocated for Howie and you knew what you were talking about.  They all understood that around the table.”

It was quite a compliment.  One that I will readily accept.

I need to be a major player on the IEP team to make sure my kid gets everything he needs to help him succeed in school.

**********

I could share the details of my son’s IEP here, but since every child is different and has different needs, I thought I’d go a different direction.

The IEP meeting itself can cause stress and anxiety for weeks leading up to the day, and the meeting itself can be quite daunting.  It’s usually the parent(s) and then any number of therapists, educators, and administrators sitting around a big table.  You’re discussing the most intimate and detailed issues about your child.  It can get emotional and painful quickly – on both sides.

I have worked hard to get to a place of mutual respect with all players on my son’s’ team.  So I thought I’d share how I’ve been able to make our IEP meetings successful so far.

I’m not talking bringing cookies and coffee to the meeting.

I’m talking work.  For me.

I have to do my homework: The IEP meeting can get overwhelming quickly as terms and jargon get thrown around the table.  Before our first meeting for my son three years ago, I asked a friend to send me a copy of her son’s IEP.  Not so I could copy it, but so I could learn the language used.  I understood that a flowchart would be used to determine my son’s eligibility for special education programs based on his autism diagnosis.  I became familiar with the different parts of the “grid” and delivery service methods.  I went to sites like Wrightslaw to understand the process.  And each IEP meeting, I make sure I know what each goal means and how he’s been progressing on them.  So that way, when our OT says “I’m going to move myself from the ‘C’ part of the grid to the ‘A’ part of the grid” I know that means that Howie no longer needs direct OT service work, but that she’s adding herself as a weekly consult to make sure his sensory needs are being met in the classroom every day.  Or when the BCBA says “We’re going to start taking more ABC data on Howie to better track his behavior issues” I know that means Antecedent/Behavior/Consequence data. That way, we’re not taking time to go over the details of the words in the meeting so we can have more time to have a philosophical discussion of what that means for my son. I also make sure I have read every report they have sent to us and have copies of the reports with me at the meeting.  I need to be as prepared as the other people at the table.

This also means filling out any and all paperwork that they send me.  For Howie’s evaluation, I had to complete a number of speech/language home assessments and a new sensory profile.  I did it the day I got them.  If I didn’t, I’m pretty sure I would have lost them in the sea of clutter in my house.  The therapists appreciated how quickly I got them back, because it makes their job easier too.  In our meeting, our special education director complimented me on returning the IEP meeting acceptance form and thanked me for answering the questions.  He said “Most parents just check off that they will be here.  They don’t take the time to answer the long term/short term goals questions, or write down what their child’s strengths and weaknesses are.  You help us by answering those questions.”  I can’t imagine NOT answering them.

I Know The Players: The names and titles of the people sitting around the table can be daunting : physical therapist, occupational therapist, school psychologist, special education director, etc.  But they are also regular people who play an important role in my son’s daily school life.  I need to know who they are and what they do before that meeting.  Howie’s OT has been working with him for three years now, and over those years I’ve gotten to know her well and she knows me.  So when she tells me in the above example that we’re dropping OT direct service, she looks right at me and says “We’ve been talking about this for a year.  He has met all his goals in amazing fashion” I know she’s telling me the truth and I trust her judgment.  Our speech/language pathologist is the same way.  She lives in my neighborhood and I wave when she goes by on her daily walks in the summer.  We stop and chat when we see each other.  Our special education director has a son who was in Howie’s preschool.  I send thank you emails. I drop in to school and say hello.  We have monthly meetings with his classroom teacher and BCBA to check in on how things are going.  I know them, and they know me.  They know my other two boys.  We aren’t strangers.  So when I walk in that room, there are no surprises and no unfamiliar faces.

Because we know each other, they know I will be as honest with them as they are with me.  I will give them the information they need to help my kids.  I made sure they had a copy of Howie’s recommendations letter from his developmental pediatrician before the meeting so they could read her suggestions and ideas.  I have been upfront about the fact that we have home behavior services now for Howie, and have even had his consulting therapist go into school to observe him there.  I’m not holding back, and I expect the same from them.

Because of this trust, they know I’m actually looking for information to help with Howie at home when I ask for weekly reports on his OT and social speech sessions and daily logs from his aides.  It’s not that I don’t trust that it’s happening, it’s that I want to be able to continue his work at home in a way that he understands.

I Know My Kid:  I am fully aware of my son’s strengths and challenges.  I’m not under any false impressions about his behavior, nor am I ignoring the progress that he has made.  So again, I know it’s okay to drop direct OT service from his IEP this year.  I know he has met his goals because I see him write, color, cut, fasten and zip every day.  I also know that his sensory challenges are not managed appropriately by him in school or home.  So I would never agree to dropping access to the OT room or a weekly consult to train staff to implement his sensory diet.  I’m also in full agreement that he needs weekly social skills session taught directly by the speech/language pathologist.  And I would never – at this point – agree to giving up his one-to-one aide, nor would I give up his extended year summer program.  And they know that.  It’s not about picking my battles here, it’s about knowing what my son needs.  So I’m not going to argue for services that aren’t appropriate.  But I will push for any and every service he needs for success at school.

I’ve learned to use direct and unemotional language in the meetings, but never letting them forget that we’re talking about an amazing 5 year old boy.  Our goals as a team are the same – to help my son succeed.  We’re all on the same page.

It’s still personal.  It’s still about my son.

My son’s team knows this and it leads us to creating a respectful discussion around the table.  We may disagree but we when we do it’s about the issues and not about personalities.

I have had to do a lot of prep work to get us to this place.  But it has yet to feel like they are out to “get us”.

**********

I’m not naive enough to think that this is some magic formula for the perfect IEP meeting.  I know that my experience, unfortunately, is not the norm.  I have friends who have done everything right and still end up fighting to get their kids even the most basic of services.  Money, personalities, and a million other factors can make IEP meetings miserable for all sides.

For me, the key has been realizing that I am equally as important as all the other people at that table – maybe even more so.  That is my child we are talking about.  His successes, his failures.  When he succeeds, we’ve done our job.  When he doesn’t, it’s not because of something he did.  It’s because of something we as a team didn’t do to help him.  I will make sure that his support team loves him and respects him as much as I do.

Our team is now heavily invested in helping my son reach his potential.  They want to see him smile every day.

That is our number one IEP goal.

“Life is very short, and there’s no time
For fussing and fighting, my friend.
I have always thought that it’s a crime,
So I will ask you once again.

Try to see it my way,
Only time will tell if I am right or I am wrong.
While you see it your way
There’s a chance that we might fall apart before too long.

We can work it out,
We can work it out.” – We Can Work It Out by The Beatles

 

Believe in Yourself

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.

**********

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.

**********

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.

**********

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.

**********

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.”

**********

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)

 

You Can’t Always Get What You Want redux

Yes, my husband rocks.  So much so that my post on envy, love and the sensory diet is up on the SPD Blogger Network today.  So if you missed it the first time, check out the great pictures of my son and my husband…all taken by me.  From the doorway looking in…

 

You Can't Always Get What You Want

Click Here for You Can’t Always Get What You Want

And while you’re there, check out some of the other amazing posts by parents of kids with SPD.  If you have a child with sensory processing disorder, think about writing for us.  You don’t need to be a blogger already.  Just a mom or a dad with a story to tell.  We want to hear it.

 

You Can’t Always Get What You Want

I have seen the promised land of therapy rooms.

I have visited these amazing basements equipped with swings, trampolines, a trapeze and quiet tent spaces.  Rooms filled with sensory balls and body socks and noise canceling headphones.  I have stood in the doorways of these spaces but have never crossed in.

Because it’s not my house.  Thou shall not covet thy neighbor’s therapy room.

I’m over at Hartley’s Life With 3 Boys with the rest of the story…I’m wanting what I can’t have.

You Can't Always Get What You Want

Click Here for You Can’t Always Get What You Want

 

Can’t Cry Anymore

In my family, we call it the “weepy gene”.

It could also be called the “cry in public” gene.   Or the “whenever I talk about my family or something emotional, I get teary” gene.  Or the “please don’t ask me to give a toast because I might not get through it” gene.  Several members of my extended family have this gene.

Not me.  I’m not a public crier.

Not that there’s anything wrong with crying, but doing it around other people is just not something I’m comfortable with.  As far as I can remember, there have been only two times in my adult life that I have become so teary that I couldn’t speak – once at my sister’s Bat Mitzvah, and secondly at the night before my brother’s wedding.  I didn’t even cry at my father’s funeral (probably because I let my brother do all the talking that day).

Not that I don’t cry.  I just end up saving it for the ride home alone.  Or in the bathroom.  Or in front of Tim (lucky guy).

So I certainly wasn’t going to cry during an IEP meeting.  Nope, not me.

I pulled out all my tricks during the meeting to keep my emotions in check.  I fiddled with my pen.  I pulled on my sleeves.  I broke eye contact when necessary.  I counted the days in my head until Spring Training starts.

There were two moments when I thought I was in trouble.  The first came after his school OT was finished talking.  She told us that he had met all his fine motor goals.  ALL. HIS. GOALS.  This was a kid who until last month couldn’t color, let alone write his name and all the letters.  He couldn’t hold the pencil right.  Now he’s zippering, buttoning, and drawing recognizable shapes and figures.  As she got up to leave, I thanked her for all her hard work this year, and told her how grateful I was for all she did.

“Oh no”, she said.  “This was ALL Howie.  He wanted to do this.  He wanted to learn.  He did this all on his own.”

With the tears welling up, I started counting the holes in the ceiling.

A few moments later, tears nicely pushed back inside, the team leader asked Howie’s one-on-one aides to talk a little about his progress in the classroom, and what they saw as his strengths and weaknesses.  We shared stories, went back and forth about some ideas, and as they stood up to leave, one of them said to us:

“We just love him.”

And the tears were back.  I whispered a “thank you” as I calculated that there were 51 days until the Red Sox started their season again.

I made it through the rest of the meeting on edge but tear-free.  We ran through his goals for the rest of preschool and the start of kindergarten, talked about his summer program arrangements, and worked through some of the sensory accommodations that might be necessary for kindergarten to be successful.  Right now, at preschool, Howie accesses the OT room almost as soon as he gets into school so that he’s able to function appropriately in the classroom.  This means that he misses some valuable social time with his peers during their center time, as he returns just as morning meeting begins.  The elementary school OT suggested that he might want to come to kindergarten 15 minutes early, so that if he needs the OT room, he goes before the other kids get there and doesn’t feel like he’s not part of the school routine.  Tim thought that maybe there was a way for him to get that sensory input at home before school started, and we agreed to start using some of our home services to work out a better before-school routine.  All of us around the table agreed that the more Howie felt like a full member of the inclusion class, the better it would be for him in the long run.

They all thought that with the right accommodations in place, Howie will be ready for kindergarten next year.

I left the meeting very proud of myself, having kept those tears at bay.

Until we reached the car.

I climbed into the driver’s seat and turned to say goodbye to Tim.

“You know,” Tim said, “if we have to get a dumpster to clear out the basement and put a equipment down there for him, we’ll do that.”

Cue tears.  Cue sobs, actually.  Giant ugly body heaving sobs.

My poor husband, who has seen this so many times before, knew exactly what to say.

“Are you crying because I said I’d finally clean out the basement?”

The joke to make me laugh when all I want to do is cry.  We both knew the cries were a mixture of relief and exhaustion.  Tears of pride because our son had been doing so well, but also tears because of the road still ahead of us.  Tears because we know we had done so much work to get him to be ready for kindergarten next year, but also knowing that there’s so much more we could and should be doing to help him.

I pulled myself together on the ride home, and was able to talk coherently with my friend about the meeting when I got back.  The tears once again were pushed way down under the surface.  Because that’s how I bury the weepy gene.

It’s clear now that my son is ready for kindergarten, and kindergarten will be ready for him.  The question remains, am I the one who isn’t ready?  And where will I go to hide the tears on that first day?

“And too much time I’ve been spending
With my heart in my hands
Waiting for time to come and mend it
I can’t cry anymore” – Can’t Cry Anymore by Sheryl Crow

 

Sleep Baby Sleep

School of Parenting

Course: Sleep Management 101

“Sleep Baby Sleep” – Case Study #1: The Butler Family Corporation

The Butler Family Corporation is a medium sized group located in a fairly small community.  The corporation is headed by the co-CEOs, Mr and Mrs. Butler.  They have three young boys ranging in age from almost 2 to eight years old.  The company’s main job is to provide clothing, food, shelter, unconditional love and guidance to the three boys to help create new valuable members of society.

Sleep has been an issue for the Butler Corporation almost since its first member joined a little over eight years ago.  The first child, Gerry, was a terrible sleeper.  While originally thought to be caused by the use of cloth diapers (Mrs. Butler thought that using them made Gerry wake up every time he was wet), the main reason for the child’s sleep issues were that he liked being with someone when sleeping.  Gerry took his naps on or next to Mr. and Mrs. Butler until he was 20 months old, until Mrs. Butler finally developed a good nap time routine.  Night times were more difficult, and while Gerry started out in his crib at night eventually he made his way into Mr. and Mrs. Butler’s bed.  Mrs. Butler was quite ashamed of this behavior, since all her friends had their kids sleeping in their own beds.  She never talked about it with anyone outside of the corporate inner circle.  It wasn’t until Gerry was over 4 years old that he stayed in his bed all night long. He has been there ever since.

About that time, the next member of the corporation arrived.  Howie’s bedtime struggles were worse.  Howie was colicky and woke up every 45 minutes to nurse.  He would only sleep if touching someone, and even then was up all the time.  Nap times were worse – every nap was on someone’s lap and even those naps were usually cat naps.  The problems were compounded by the fact that Mrs. Butler was also trying to take care of Gerry’s needs, so Gerry ended up watching a lot of TV and playing on his own while Howie slept.  Howie’s sleep issues became such a problem that Mrs. Butler took him to see many experts, including Dr. Ferber’s sleep clinic at Children’s Hospital at age 2.  Howie (and Mrs. Butler) endured one overnight sleep study and one 24 hour EEG.  The results showed abnormal brain “blips” that were diagnosed by Dr. Ferber’s colleague as “rolandic benign epilepsy”.  Mrs. Butler was told to basically ignore this – there had been no evidence of seizures and if none were observed by the time Howie was 11 or 12 years old, then he had outgrown the diagnosis.  Mrs. Butler was sent home with instructions to leave Howie in his crib screaming, and if he threw up, she was to clean it up and leave him in there, basically telling her that the sleep problems were a result of poor parenting routines.  Mrs. Butler was beside herself with this, and after a few nights of Mr. Butler trying the technique, Howie was back in the bed with them.

Mrs. Butler began to look for other reasons why Howie wasn’t sleeping, including reflux or allergies.  Howie went through more testing to rule out anything physiological.  Mrs. Butler had also found out around this time that another member would be joining the corporation in nine months, and the search for answers became desperate.  Mr. and Mrs. Butler knew that Howie had to get out of their bed with another baby on the way.  Mrs. Butler spent several months of her pregnancy sleeping on the floor next to Howie’s mattress, as well as sleeping in Howie’s big boy bed with him.  Early Intervention had been called in at this point, and Howie had been given the diagnosis of Sensory Processing Disorder by their occupational therapist (and later at age 3 1/2 his autism spectrum diagnosis).  He started working with the OT on his sensory issues and that was leading to some success at the sleep level.

In the fall of 2008, the final member of the corporation arrived.  Lewis was a better sleeper from the start.  However, he still started out in the bed with Mrs. Butler to ease with feeding as she recovered from her third C-section and almost 3 years of sleep deprivation.  Determined not to make the same mistake a third time, Mr. Butler made it his mission to get Lewis to sleep in his crib as soon as possible, especially since Howie was still having several night wakings per night.  Mr. Butler successfully achieved his goal on Christmas Day 2009, and from that moment on Lewis napped and slept in his crib through the night.

There was a period of time when sleep was going quite well for the members of the corporation.  Gerry was continuing to sleep fine on his own.  Thanks to weighted blankets, melatonin and a better understanding of sensory issues, Howie was sleeping through the night in his own bed at least 75% of the week.  He still needed someone to lay next to him while falling asleep, but was usually able to stay there all night long.  Lewis would go to bed in his crib at the same time as everyone else, and would stay asleep until the morning.  Mr. Butler was finally getting some sleep.

Mrs. Butler on the other hand, was having trouble.  She would wake up every few hours waiting for the shoe to drop.  After over 4 years of not sleeping, she was having trouble training herself to sleep soundly again.  Every noise she heard on the monitor or from the boys’ rooms in the middle of the night sent her out of bed quickly, trying to manage the situation before the whole house woke up.  If Lewis cried a bit, she would run into his room and pop his pacifier back in.  If Howie moaned or shuffled in his bed while sleeping, she quickly fixed his covers and weighted blanket so he would settle back down again.  Mrs. Butler knew that the alternative might be hours of screaming and crying, causing everyone in the house to be awake.  She was willing to sacrifice her sleep to make sure everyone else was getting the rest they needed.

This has been an ongoing issue for Mrs. Butler and the whole Butler corporation.  Recently, things have changed back to old sleeping patterns.  Gerry, while sleeping through the night, is having a hard time falling asleep.  Howie’s night wakings have returned, and increasing the melatonin dosage has not helped.  And Lewis, previously the best sleeper in the house, is fighting naps and bedtime, and is up two or three times during the night.

The challenges for the Butler Corporation regarding sleep are many.  The lack of sleep causes irritability and quick-tempered behavior from everyone, but especially Mrs. Butler.  This is especially hard for her because she has never considered herself a “yeller”.  The Butler Corporation is at their wits end, and would do anything for one good night’s rest.

The Case Questions:  As special counsel to the Butler Corporation, please identify and evaluate one or two strategies that you think would help keep this company afloat.  Consider the solutions that they have already tried, and analyze where they might have chosen a different path.  Recommend a specific action plan to help them more efficiently manage sleep in their house.

And if you can’t do that, just let them know that this happens in your house too, and that they are not alone in their sleep misery.

______________________________________________________________________________________________________

“Sleep, baby, sleep
Your father tends the sheep
Your mother shakes the dreamland tree
And from it fall sweet dreams for thee
Sleep, baby, sleep
Sleep, baby, sleep” – Sleep Baby Sleep, A Lullaby

 

Seasons of Love

Tonight was Back to School night for my son’s preschool. As I walked up the steps into the big brick building with all the other parents, a weird feeling came over me. A little bit of nerves, a little bit of sadness, plus a little bit of something else that I couldn’t quite place.

Until I remembered. This is where it all started. Exactly one year ago. This was the night when I realized that my son needed help.

Tonight I walked past the classroom he was in last year and glanced in as the parents were taking their seats in the little blue and red chairs arranged on the circle time mat. One year ago, that was me. The “Me” with the lump in my throat. The “Me” that spent every preschool morning arguing and yelling because my son wouldn’t put his shoes on. The “Me” that dragged him out of school kicking and screaming because playground time was over. The “Me” that hadn’t slept more than 3 hours straight in 3 years. The “Me” that just couldn’t figure out what was going on with my kid.

I stopped for a moment in the hallway and closed my eyes. I remember that evening so well. I remember barely listening to his teacher discuss the preschool curriculum because I was still stuck on how terrible his day at school had been. I remember half-listening to her story about how the kids had table time, and that one kid (no name given) kept taking other kids’ name tags off the tables and putting his own there because he wanted to play with the trains and only the trains. I remember knowing in my gut that was Howie, and while the other parents laughed at the anecdote, it made me want to cry.

I remember asking the aides in the classroom how things were going for Howie, and their response was “ask the teacher.” I remember staying late after everyone was gone and talking at length with his teacher about his transition issues, his meltdowns and his difficult behavior in the classroom. She told me that the general accommodations in the classroom weren’t working for Howie anymore. And I remember this incredibly smart and astute teacher telling me – without words – that we needed to get Howie evaluated by a professional.

And I remember crying the “ugly cry” the whole ride home from that Back to School night one year ago, knowing in my heart that she was right but not knowing what it all meant or even what to do next.

That night set in motion a chain of events that would change our family forever. There was the initial appointment with our pediatrician who told us that she didn’t think Howie was on the spectrum, but that he had some “spectrum-like tendencies”. There was the speech/language assessment and the hearing test to rule out anything physical as the reason why Howie couldn’t process two-step directions. There was the piles of paperwork as we tried to get him on every wait list possible for an evaluation, and the call three months later for a appointment with a developmental pediatrician. Then the diagnosis that we expected but still didn’t understand – autism spectrum disorder.

From there, much is a blur. The diagnosis allowed us to reconvene our special education team and develop Howie’s IEP. He was assigned ABA techs to work with him one-on-one in and out of the classroom. He had OT visits, social speech groups, and home visits. The school tailor made a program to fit his needs. I got PECS cards, visual schedules, and daily log sheets of his activities. I learned words like “stimming”, “perseverate”, and “sensory diet”. We gave Howie our undivided attention and divided our attention with our other two boys. We bought books, weighted blankets and therapy equipment. We learned behavior modification techniques and used phrases like “red choices” and “green choices”. We worked closely with the amazing school staff and that incredible teacher to do whatever we could to give Howie a chance at loving school and succeeding in life.

And…

What a difference a year makes.

I walked into his new full day inclusion classroom tonight with a smile on my face. My husband and I had met with his teachers last week and I already knew things were going well. He has two incredible ABA techs that really understand him. They are giving him the choice of starting his day in the OT room to help “get the wiggles out”.

Let me say that again – they are giving HIM the choice. Which means he has reached a point in one year where he is able to verbalize his sensory needs. My little guy, who one year ago couldn’t leave school without a total and complete meltdown, now understands his body enough to know what he needs. My little guy, who one year ago couldn’t lose a game or draw a picture without a complete on-the-floor tantrum, is now running races on the playground and bringing home pictures that he wants hung up in my husband’s office. Of course, this is all with his amazing teachers by his side, cheering him on. But still…after this incredibly hard year, filled with anxiety and confusion and tears and difficult work…maybe we’re finally getting somewhere. Maybe we’re finally understanding our son.

I sat through the entire curriculum presentation tonight feeling – for the first time in a year – that my son could do it. I looked around at the walls and he actually had artwork up for display. Every one of his teachers came up to me and told me how much they enjoyed having him in class. Every one of them told me how amazed they were at how well his was doing and what a difference it was, even from just summer school. One of his techs actually told me that Howie’s “the reason I love my job.”

What a difference a year makes.

And now, maybe there’s hope for kindergarten back to school night next year.

“Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year?” -Seasons of Love from RENT

In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles, in laughter, in strife
In five hundred twenty-five thousand six hundred minutes
How do you measure, a year in the life?”