January 7, 2013
My son’s sensory issues are well documented here.
But what about my own?
I’m exploring that at the SPD Blogger Network today. Come over and read: Say You, Say Me.
And while you’re there, click around. There are some amazing essays and great do-it-yourself projects to check out. And maybe you’ll find a moment to write something too? (I am the editor there…I have some pull…)
Click HERE for the SPD Blogger Network.
November 14, 2012
My friends.
Just when you thought you were all done with voting for a while…
Now I need your vote.
SenseAbility Gym, the sensory gym that we are opening in Massachusetts, is up for a chance at a $25,000 grant from FedEx. Businesses from all over the country are competing for this money in an online contest.
Here’s what we wrote:
SenseAbility Gym was established in May of 2012 as a sensory gym for special needs kids. As moms of children with autism, we have found that there are a couple occupational therapy centers in the area that occasionally offer public open gym time, but there is nothing in the area that provides the year round open gym services. With the autism rate rising to 1 in 88 children, we knew many special needs families needed a place for their children to play safely and find support and acceptance.
We’re a non-profit relying on donations, grants and fees paid by families who will use our gym. There is no other business like ours in central Massachusetts that provides the services that we will. We believe that children deserve access to the equipment used in their schools and therapy clinics. This will be a place where parents and children can go to socialize with other families with similar challenges. Our community needs this grant to get our doors open for these families and stay open.
The $25,000 grant will go directly into the programming and operation of the gym. We need specific therapeutic equipment for the gym that is expensive (things like therapy swings and safety mats). We are also offering specialized classes for kids in social skills and life skills and the money will go towards offering those at reduced rates. This grant will allow us to use other private donations for direct operating costs, giving us the rest of the money we need to open to the gym for families.
We need your vote today. And every day until November 24th.
Click HERE to vote directly.
Click HERE to join our Facebook event page for information and reminders to vote.
Click HERE to make a donation to our gym.
On behalf of all the kids in our community who will benefit from this, we thank you.
October 26, 2012
E-mail I sent to Howie’s teachers this morning:
Just wanted to give you a heads up with Howie and the upcoming hurricane. Howie is very sensitive to big changes in barometric pressure. I am as well but while it manifests itself in the form of a headache for me for Howie it causes big behavior changes. His vestibular system gets rocked when the pressure drops. I know it sounds weird, but we’ve seen it several times, including the last hurricane and that summer when the tornadoes rolled through western MA. It’s usually about 24-48 hours before the actual weather event comes in.
With this upcoming hurricane, I just read that the pressure will drop incredibly low. Based on the track of the storm, Sunday is more likely to be Howie’s harder day, but he could start feeling it as soon as today and into Monday. If you see extra stimming, or he seems out of whack, it’s probably that.
Hopefully we won’t be hit too hard! At least it’s not snow!
These are the types of e-mails I write lately.
The news today is full of reports of a “Frankenstorm” as Hurricane Sandy heads towards the east coast. Forecasters are calling for an incredible drop in barometric pressure as it hits land sometime late Monday and into Tuesday.
And so I write e-mails about meteorology and storm tracking and sensory processing disorder.
I know that for some people this connection makes no sense. As in “really? The weather affects your kid’s behavior? Come on. Weather changes were something that made old people complain about their aches and pains, but it’s not really real. “
It’s just an excuse for his bad behavior.
I’ve been at this long enough with my kid to tell you. It’s real.
I get headaches and neck aches right before a storm comes through. When Hurricane Irene passed near us last summer, it felt like someone was standing on my head.
I can verbalize it. I can explain what is happening and why. And people understand it.
My son can’t explain it why all of a sudden he needs to run laps or crash into things or spin in circles and stim. His reactions to the same trigger look like behavior problems.
It sounds like hooey to someone who doesn’t live it. But I’ve tracked it. Storms, moon phase changes, illness…all these things affect my son’s sensory system.
They probably affect all of our sensory systems. But most people have learned to cope with how we’re feeling. A few extra Tylenol. Or a nap.
Howie is still learning what makes him more regulated. He knows what activities make him feel better but he has yet to figure out the trigger or how to do it most “appropriately” for the setting.
I’m not making excuses for how he’s acting. If he’s being unsafe or not able to be in the classroom then he needs to be removed, redirected and helped. Unacceptable behavior is still unacceptable behavior.
I will however be proactive in helping those around him understand what is a sensory response versus what is a behavior so he doesn’t get into trouble for something he can’t control.
So that maybe he gets an extra sensory break during the day. Or two visits to the OT room versus just one. Or just a well trained eye on him looking for signs of discomfort and dysregulation.
And hopefully we can teach him why he’s feeling the way he does so that next time, he has the tools he needs to cope and feel better.
So I send e-mails warning of Hurricane Howie as Hurricane Sandy approaches.
At home, we’re stocking up on Stonyfield yogurts, fruit leather and flameless candles and padding the house with pillows and bean bag chairs for safe crashing.
Getting ready to weather any storm that comes our way.
Got our umbrellas ready
“Squalls out on the gulf stream,
Big storms coming soon.
I passed out in my hammock,
God, I slept way past noon.
Stood up and tried to focus,
I hoped I wouldn’t have to look far.
I knew I could use a Bloody Mary,
So I stumbled next door to the bar.” – Trying To Reason With Hurricane Season by Jimmy Buffett
September 24, 2012
Yes, I know that’s not a real song.
But I had no other way to title this. It’s an original title for a brand new project of mine.
It’s perhaps the most important thing I’ve done since marrying my husband and starting my incredible family.
My very dear friend and I are opening a parent-led sensory gym. As a non-profit. For kids just like mine.
We’re calling it “SenseAbility Gym: A Sensory Gym for Sensational Kids“.
But first…the back story.
**********
This winter, my friend and I took our sons to an open sensory gym in sponsored by the Autism Alliance of Metrowest. We watched our boys run around and play and smile. The equipment was familiar to the boys from their OT sessions at school so they knew just how to use it. As a bonus, my friend and I got to actually talk to one another. A few weeks later, we attended another sensory open gym, again sponsored by the Autism Alliance, this time at a private OT clinic. Again, the boys were in heaven. Jumping into ball pits, climbing through the squeeze machine, swinging around on the therapeutic swings. And again, we got to talk. Mostly about how we wished there was something like this open near us all year round.
I wrote about our experience there in my blog. I talked about how welcoming it was. How one child kept telling everyone it was a leap year and reciting the other years when a leap year had occurred. How Howie made a new friend there who loved to spin around in the closed up swing as much as he did. How happy our kids were. And that no one there batted an eye if a kid was upset, or melting down, or jumping up and down, or making noises, or making eye contact or not. It was pure acceptance and love for our kids.
Such a happy face!
My husband Tim read it, saw Howie’s happy face in the pictures, and casually said “You should open a place like that.”
I’m not sure he actually meant it. But I started to cry. Because I knew we had to open a place like that.
The next night, I went out with a few friends for drinks. All autism moms. I told them what Tim said. They said we had to do it.
The next morning, I went for a walk with another friend. She’s been my friend since our oldest boys were in preschool together. I told her to talk me out of it. She talked me more into it. And handed me a book on how to start a non-profit in Massachusetts.
The more we talked to people: parents of kids with special needs, parents of kids without special needs, therapists, teachers, you name it. Not one person told us it was a bad idea. In fact, they all said we had to do this.
We met with a business consultant to organize our thoughts. We relied on people in our community who took their personal time to sit with us and tell us what we needed to do to make this work. We sent out a survey and wrote a business plan. We asked my cousin to design our website and our incredible logo. We filed with the state as a nonprofit, with the attorney general’s office as a public charity, and received our 501(c)3 status from the IRS faster than anyone said it would happen.
And so SenseAbility Gym, Incorporated was born.
**********
So what are we? What are we trying to do? And why am I writing about this here?
SenseAbility Gym’s mission is to provide a parent-led sensory gym, giving children with special needs a safe, fun, indoor area where they can play and accommodate their sensory needs. This will be the first of its kind in the Metrowest area of Massachusetts. We’re modeling our gym after an incredibly successful sensory gym in Brooklyn, NY.
We believe in the fact that all children deserve access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics and we believe that parents need to interact with their children to learn what helps their child “feel better” and have fun. There are four important components to our mission.
Through this blog, I’ve connected with special needs parents all over the country and the world. The one common statement that most parents say is “I feel so alone. My child is the only one that has these extra special needs. I have no one to turn to for support.”
My friend and I know how lucky we are to live where we do. From the moment that we knew Howie needed extra help, we had people to help us. Our pediatrician referred us to Early Intervention to get help for his sensory issues from an occupational therapist. When he entered preschool, he was surrounded by a loving, caring, knowledge group of teachers and support staff who knew before we did what Howie needed. And when he received his autism diagnosis, we were instantly supported by this team here in town to get him the services he needed. And through that, he made friends. And I made friends. And without that…I don’t like to think about it.
We see the gym as a place not only for our kids and kids like ours to accommodate their sensory needs, but also as a place to build their social skills and interact with other children like them. We see the gym as a place where moms and dads can interact with parents just like them.
As Howie told me the other night: “SenseAbility Gym is a place where kids can learn to get along.”
We see it as an another piece of the support team helping families know they are not alone.
**********
I’m going to get numerical here for a moment. We know that as many as one in six children have sensory processing issues. That is from the SPD Foundation. The CDC reports that 5.4 million children between the ages of 4-17 have been diagnosed at some point in their lives with ADHD in 2007 and that number is rising. We know that 1 in 88 children – 1 in every 54 boys – are diagnosed as on the autism spectrum.
Taking a small seven mile radius around our town – the distance that people in our survey said they would travel for a service like ours – we know we have the potential of connecting with over 400 families who could use the gym. We’re guessing that people will travel farther and the actual number will be even higher.
That is over four hundred families that could finally connect and say “Me too.”
**********
And this is where you come in.
I need your help. As a non-profit public charity, we are completely reliant on donations, grants, and our membership dues to stay open. None of us are taking a salary. All the money we raise goes right back into keeping the gym open and running: rent, electricity, equipment, furniture, insurance.
Our gym will be located in Hopedale, MA. There will be one large open space with equipment like therapy swings, a scooter board ramp, a ball pit, and tunnels, balancing equipment and a squeeze machine. We’ll have one quiet “sensory” room with crash pads and low lights and calming activities. And one classroom space for us to hold social skills or life skills classes, or to be used as a sensory-friendly homework room for children who need that to get their work done. Families will be able to purchase memberships to access open gym times with their children. In addition, we plan to offer sensory based group activities, and have the gym available for private therapists to use with children and their parent.
We would like to have our grand opening in January 2013. To do that, we need $38,000 to open our doors. That includes purchase of all the equipment and furniture for the gym.
We are actively pursuing local and national grants to help get us closer to that number.
I need you to tell people about us. Maybe you know a family who has a child with special needs in our area who could benefit from a membership at the gym. Maybe it’s your own family. Maybe you work for a company that is generous with community giving. Maybe you know children who need to raise money as a community service project and they would like to purchase a piece of equipment.
I need you – my friends and family – to help make this gym a reality. Not just for my kids or my friend’s kids.
But for mom who told me at our town’s Day In The Park that her daughter needs a place like this.
For the parents sitting in an Early Intervention family group right now wondering where they could find a safe place to meet once their kids turn three.
For the dad who is desperately looking for a way to connect with his autistic son, but can’t afford the play equipment his child needs.
Every dollar donated goes to the gym and those families.
It’s a balancing act
**********
Last night, we held our first fundraiser in our town. The above is the speech I gave to the packed house that came for food, wine, chocolate, coffee and conversation. The room was filled with family and friends and strangers who are now friends. The most amazing part was it was not all people with special needs children. It was our community. It was teachers, parents, friends, therapists, and business leaders. They came because they wanted to support something that will benefit everyone.
We had a “sensory table” manned by my son Gerry and his friend. She’s an amazing young lady who, like my son, understands how much swings and fidgets and weighted blankets and headphones help their siblings “feel better”.
We raised a lot of money last night. We’re just under 40% of our goal.
But we still need you.
Clicking HERE takes you right to our PayPal donation page. We are a 501(c)3 organization and your donation is tax-deductible to the extent permitted by law. Every dollar goes towards get our doors open.
I want to be able to come here in January and post pictures of our grand opening. I cannot wait to see the smiling faces on the kids that come through.
And their parents.
On behalf of my friend and every family that this will help, thank you for reading.
To read the news story about our fundraiser, click HERE.
To read more about our plans, click HERE.
To make our dream a reality, click HERE.
July 26, 2012
So I am stepping WAY WAY WAY out of my comfort zone.
Next week, I’m heading to New York City for the annual BlogHer conference.
It’s a three day conference celebrating all things blogging. I’m heading down a day early for the pre-conference HealthMinder day, which will have specific special needs panels.
If you don’t know me, you may not know why this is feeling so out of my league. I’m the one much happier behind a computer screen than in a crowd. At a party, I’m hanging by the food and drink table or leaning up against a wall in the corner. I prefer to stay quiet, unnoticed. I get anxious and nervous at Costco, so giant conferences make me edgy.
But I just had to go to this one. And I have four reasons why.
Reason #1: In addition to writing here I’m also the managing editor at two other blogging sites. For over a year now, I’ve been a part of the amazing team at the SPD Blogger Network, a group blog for parents of children with sensory processing disorder. The site has a special place in my heart. SPD was Howie’s first diagnosis. Two years ago, when I started to write my own personal blog here, I connected with Hartley Steiner at her blog. She encouraged my writing and put my blog on her site. When she founded the SPDBN, she asked me to be there to help. And there I’ve stayed. We’ve created a loving, supportive and understanding community there on the blog site and on our Facebook page. It’s the place I come to when I’m feeling particularly low or incredibly proud. Every story is shared with honesty and love. I understand my son better because of the incredible people who write for us every day.
The SPDBN relies on posts from parents. Each day we post a new story. I’m going to BlogHer to meet other parents who share a similar journey and I hope I can convince them to come write for us.
(side note: I’ll be the one with the cute Otto the Octopus. See photo below. Made especially for me to take to BlogHer by the incredibly talented SPDBN team Karla from The Itsy Bitsy Spider. Find Otto, find me.)
She made those other cute guys for my boys. I may snag one of them to take with me as well…
The other site I help manage is The Oxygen Mask Project. It was started with my friend Shannon as a way for us to reclaim ourselves, reminding us that we need to take care of ourselves if we’re going to take care of our kids. It started small. We started tweeting with the #yearoftheoxygenmask, sharing what we had done for ourselves that day. For me, it was drinking my coffee when it was hot. And showering. While to many that sounds stupid, for me just doing that was a challenge. I was so busy getting people out the door to school/therapy/baseball/piano/therapy that there was never anytime for me. I hit bottom. And now we have 880+ Facebook friends and 52 posts from writers from all over the world. And every day we’re talking about how we’re important too.
There will be a special panel at HealthMinder day called Overcoming Burnout: Replenishing Your Reserves. I’m going to BlogHer because this is exactly what we’ve been talking about for six months.
Reason #2: Two of my favorite people are being honored at the special Voice of the Year. I can’t wait to hear my friend Varda as a reader for the “Heart” nominated posts. I expect there to be very few dry eyes in the house.
And I’m so thrilled that my friend Stimey was nominated as a Voice of the Year for her incredible post Not Even Wrong. This post changed my life. That’s not hyperbole. I read it at a time when we were having tremendous struggles with Howie and school. Her post about her son Jack changed EVERYTHING about how I viewed Howie’s school life, and made me step back and look at how we needed to teach him. Because my perspective changed, I was better able to communicate with his team at school and we all turned things around. I am forever grateful to Stimey for what she wrote. I’m going to BlogHer to tell her in person. Again.
Reason #3 goes with Reason #2: I’m going to be with friends. Including friends I’ve never met.
And, yes, I know that probably only makes sense to the blogging/social media world.
The best example of this is how I met my BlogHer roommate, Kristin.
Last summer, my kids’ school opening was delayed a week due to Hurricane Irene. I was completely stuck for ideas on how to entertain them when they were supposed to be in their classrooms. I whined about this on my blog’s Facebook page, and this angel named Kristin asked if I wanted to join her and her boys at their swim club. We had never met, but had a mutual Facebook friend and had become friends that way. I sent her a message saying simply YES! We chatted via email and text, and there we were at her swim club for the whole day. Our boys played and swam – sometimes together, sometimes doing their own thing. And because we were both autism moms…well the rest is history.
We’ve only seen each other once since that day at the pool. But when I decided to go to BlogHer, I asked Kristin if she’d go too. In addition to her amazing blog, she’s also written for the SPDBN and The Oxygen Mask Project. So now we’re taking the bus together down to the big city, and I’m hoping she’ll help me get out of the corner.
But this is what blogging has done for me. In addition to the incredible “in real life” friends I had, I’ve connected with a whole group of insanely smart, funny, snarky special needs parents who have taught me so much just through their words. I’ve been lucky enough to meet some of them before and now count them as my closest friends.
I can’t wait to meet this friend, and this friend, and this friend, and this friend, and this friend. I’ve been reading their work for so long and now I get to put a face with the words.
And I’m hoping a few other friends will come join me for a drink or two. Or three..
I’m going to BlogHer to connect with the people who have taught me so much.
Reason #4: I need to get away.
I’m not going to lie. This has been a long long summer. I need a little break. In addition to the usual summer things, I’ve started a new project and it’s been a lot of work to get off the ground. I’m stressed. And I’m taking it out on the kids.
I need a break to sleep. And shower. And pee alone.
I have to get some time to regroup. To feel better. To breathe. I’m going to BlogHer to find myself again.
I’m terrified of the three days away from my family. I’ve never been gone this long. But I know Tim and the boys will be fine. We have an incredible support system around us here who will help if (when?) things get sticky. I will have a social story ready for the boys so they are prepared too.
And when I come back I will be ready to take it all on again.
I’m stepping out of my comfort zone and going to BlogHer’12. See you there.
“Start spreading the news,
I’m leaving today.
I want to be a part of it –
New York, New York.” – New York, New York by Frank Sinatra
June 11, 2012
“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
May 24, 2012
So…I may have hit the panic button.
The permission slip for the kindergarten trip to the zoo came home weeks ago. I wrote it on the calendar and promptly forgot all about it.
It’s been that kind of month.
The panic started to rise last Saturday afternoon, when Gerry looked up at the calendar and said to Howie: “Hey! You’re going to the zoo?”
And Howie answered “I am?”
The panic hit full tilt that night when I was out with my friends, two of whom also have kindergarteners. We talked about the fact that the kids were riding on the “big” bus (not their mini-bus), and the trip was 45 minutes each way. With the whole kindergarten class and chaperones. And it was going to be hot. And unfamiliar. And a zoo.
One friend was telling me about the social story they had been reading with her son.
We had received nothing.
I went home and laid it all out for Tim, who was packing for a business trip.
“He’s had no prep and it’s a ZOO and we’ve only been to our local zoo twice and he’s been overwhelmed both times and it’s a long bus ride with all those kids and the smells and the noises and the lack of routine and you’re going to be away and it’s a ZOO!”
I took a breath. Tim reminded me that if I was really worried about how he would do, I could keep him home. Do something special with him.
“Ask him,” Tim said. “Find out if he really wants to go to the zoo.”
My panic calmed enough to sleep that night. For two hours.
The next morning, I asked Howie if he wanted to go to the zoo.
“Oh YES!”
Of course.
So late Sunday night, I sent off this e-mail to his team at school. Not just his teachers, but the special education teacher, the OT and the BCBA (board certified behavior analyst).
It went something like this:
I just wanted to check in about the zoo trip on Thursday. Howie didn’t know about it, so I was wondering what had been said to him or the class about the trip. I just had a couple of questions and thoughts about it, to help make it most successful for him.
Since this will be his first trip on the big bus, it’s bound to be both exciting and overwhelming for him. He and I have talked about bringing his headphones with him for the ride, and I’m hoping he can sit up near the front and with his aide. He may need a fidget or something to have in his hands for the ride as well to keep him comfortable or occupied. The noises, the smell and the crowds of kids and adults on the bus are going to make it hard for him to sit for the 40 minute ride there, and especially home.
Could you create a social story for him for both the bus and the zoo? He’s going to need the same bus visuals to remind him that the rules are the same as they are on Mini 1. He’s also going to need the story to include the rules for the zoo. We’ve been to our zoo twice and both times he’s been very overwhelmed by the sensory overload of the zoo. Again, the smells and the noises are a lot for him, and each visit we’ve had to take lots of breaks and avoided certain areas. I’m assuming that his aide will be his dedicated aide for that trip and not leading a chaperoned group so if Howie needs a break she can take him off somewhere quiet without interrupting the whole group.
If you send the story home with him by Tuesday, that will give us time to review it with him so he’s comfortable with both the zoo and bus. I assume his aides will have time to read it with him too. I’ll also make sure we look at the zoo website so he’s familiar with the animals there. If there are any that scare him or make him nervous, I’ll make sure to tell you.
I asked Howie if he wanted to go on the trip and he really does, so I know he’ll be motivated to be there. This is his first big field trip so he’s really going to need some extra supports.
Additionally, as I wrote in his home log on Friday, Tim is away on a business trip for the week this week. As you may remember, that was hard for him last time Tim was gone (back in November). He’ll need some extra love and care this whole week in addition to the help on the field trip.
Let me know if there’s anything else I can do to help make this field trip successful for him.
(note to self: don’t write e-mails to school when you are overtired, overwhelmed, and over-panicked. Your e-mails will be twice as long and twice as desperate as needed)
Monday afternoon, Howie brought home a nice social story about the bus ride and the zoo trip. His aide assured me that he would be fine and asked me to send along some extra chewy fruit snacks just in case he needed that sensory input at the zoo. Both the OT and his special ed teacher e-mailed me back to tell me they had it covered and that they were confident that things would go well.
I was still on the fence.
We read the social story on Tuesday and Wednesday, and he also read it with his home therapist (who, just by chance, had been to that zoo and told him all about it). We investigated the website and saw all the animals. He picked out his favorites.
I was still not convinced. I knew that the zoo trip would be a game time decision. As everything always is.
This morning was zoo day.
His repetitive behaviors were on an uptick. He was hitting himself in the head and babbling.
We read the story once again before school.
I kept checking in with him about how he was doing. “Are you sure you can go to the zoo today?”
He looked right at me. “The zoo is going to be A-ok”.
Well then. Game time decision made. Shoes on and out the door.
**********
My stomach was in knots from 7:40 am to 2:00pm. I thought for sure I would get a call to come get him. Once 2pm came around I knew he’d have to be back at school.
I was still a mess.
His bus rolled up at 3pm. I stepped on the stairs to help him off and one of the classroom aides was on the bus.
“Howie did AWESOME at the zoo!”
And a huge smile from Howie.
I thanked the aide profusely and ran inside with Howie. I checked his home log and read this:
the orange marker thank you is mine. it’s all I could find around here…
So the moral of the story is…it pays to panic.
Okay, maybe not.
I guess the moral of the story is that I have to let some things go. I have to let him try to do the things his peers are doing even if it terrifies me. And we have to make sure he has the supports and the preparation so he can do the things that others do. Him not going would have made him stand out more.
My kid ROCKED the zoo today.
And I may finally get some sleep tonight.
“We’re goin’ to the zoo, zoo, zoo
How about you, you, you?
You can come too, too, too
We’re goin’ to the zoo, zoo, zoo” – Going to the Zoo by Raffi
May 6, 2012
alternately titled: Holy Crap! My Kid Ate Salsa!
also alternately titled: I really needed to watch this tonight
Food issues? Yeah, we have a few.
Howie’s difficulties with eating go WAY back – starting when he was nine months old and wouldn’t eat anything with chunks in it. Stage 3 baby food? Not happening. Gagging and vomiting led to complete refusal of many foods. Add in his intolerance to anything made with corn, and his diet was extremely limited almost from the start.
And he has a long institutional memory for all things that made him vomit. He knows exactly when he gagged on a strawberry for the last time, and can tell me in great detail why a cracker made him puke (it was wet).
But we have a few go-to foods. Pizza. Crackers. Granola bars. Cocoa Krispies.
Don’t judge.
A few weeks ago, Tim was sitting at the table, eating some chips and salsa.
And then words I never thought I’d hear.
“Can I have some salsa?”
Tim and I exchanged glances, figuring this would never fly. The chunky tomatoes and peppers. The spices. The dipping of the chip into the salsa.
We gave him a bowl of corn-free veggie chips and some salsa.
Yup. Miracles can happen. Three bowls of salsa and 40 chips later I’m a believer.
Because holy crap, my kid ate salsa.
“Food, glorious food!
Hot sausage and mustard!
While we’re in the mood —
Cold jelly and custard!
Pease pudding and saveloys!
What next is the question?
Rich gentlemen have it, boys –
In-di-gestion!” – Food Glorious Food from Oliver
May 3, 2012
Thursday, April 12th
Tim and I are sitting in the office of the boys’ general pediatrician. We’ve just handed her the Vanderbilt Parent Assessment for ADHD. After a phone consultation the day before with Howie’s developmental pediatrician, I downloaded the form from the internet and brought in to the doctor.
The doctor looks at Tim. “Did you fill this out together? Do you agree with the answers on this sheet?”
Yes, Tim answers.
“Wow. Well, I don’t even have to officially score it. His numbers are so high. We’re clearly looking at adding an ADHD diagnosis here.”
I knew that already. In addition to finding the assessment on the internet, I also found the score sheet. Because I’m that mom now.
“So,” the doctor said, “let’s talk about what’s next. You already have all the behavioral supports in place. It’s time to talk medication.”
Again, we knew that already. We had done our research. The conversation was not if medication, but which one.
I was grateful to have Lewis sitting on my lap. I could focus on him and fight back the tears.
My friend asks me later that day through e-mail if I’m relieved to have this new diagnosis. She’s referring back to when Howie was diagnosed with autism back in December 2009, when I said how relieved I was to finally have an understanding of what was going on with my son. “It’s not like that this time.” I said. “It’s more like : okay, now what.”
Acceptance starts at home.
Friday, April 13th
I am supposed to meet a friend at dinner time for a political meet and greet. Lewis and I had spent an hour that morning running around, trying to find a place to fill Howie’s prescription. I sat at the kitchen table, fumbling with the medicine bottle.
I write my friend the following e-mail:
So…I can’t do it. I am a mess. I can’t go tonight. Getting the meds proved to be more of a trigger than I thought.
I know this is the right thing. I know this is the next path. Rationally I have no second thoughts. But I am terrified, anxious, worried…and sad. Really really sad.
I can’t get my game face on tonight knowing what tomorrow brings. Or might not bring. I kinda just want to cuddle up with Howie tonight as he thrashes around in his skin before everything changes.
So I’m sorry. I hope you get it. Well, I know you’ll get it. I really really wanted to go. Really really really.
Love, Alysia
Acceptance starts at home.
Saturday, April 14th – Saturday April 28th
I see the change right away. With one dose. He’s calmer. Clearer. Words and thoughts and feelings are coming out that never did before. His first week on the medication was our spring break week. We are able to problem solve and work things through. His clothing anxieties are gone. I don’t have to sit in the room when he played with his brothers to facilitate play. I wasn’t sure if I was just seeing something because I wanted to see it, but others saw it too. When Howie returned to school, he had his best week in months. School work was fun again. He’s interacting with peers, taking turns, and playing games. He has two amazing soccer practices.
Acceptance begins at home.
Sunday, April 29th
Things begin to unravel.
Anxieties are back with a vengeance.
Meltdowns are powerful.
I pull him kicking, screaming and crying off the soccer field.
Acceptance is getting harder to swallow.
Tuesday, May 1st
His aggressions return at school.
His beloved bus driver quit and he refuses to get on the bus to go home, instead screaming and flopping to the floor in the principal’s office. I’m called to get him.
He tears at his clothes for two hours before finally falling asleep.
He tells me he wishes he wasn’t human.
I can’t accept that.
Wednesday, May 2nd
I keep him home for a personal day.
We make the world’s best marble track and have cupcakes for lunch.
He has his best home therapy session in weeks and spends the evening at a friend’s house making homemade pasta.
I confirm our appointment with his pediatrician for the next day.
Acceptance is falling apart.
Thursday, May 3rd
I tell our pediatrician about school. She examines him and tries to talk to him about how he’s feeling.
He stares at the red airplane with the number 6 that hangs from the ceiling.
The doctor looks worried. She turns to me and says “This isn’t Howie.”
I nod.
We agree to take Howie off the medication.
We pack up our stuff and she looks right at me. “We’ll figure this out. It will be okay. You’re doing fine.”
I’m trying to accept that.
Tonight
I went downstairs to get a snack.
I slid to the floor and cried.
I cried because I believe that my son needs some medication in addition to all the behavioral supports he has. But I don’t know how to find the “right” one.
I cried because for two weeks I felt like my kid was back. The one that was all full of awesome when preschool ended last year. The one who laughed and ran and played and loved school and everything about it. That is my kid.
My kid is not the kid who hits his teachers and screams at his teammates on the soccer field or erupts in a fit of rage when someone takes his toy.
I refuse to accept that.
We will figure this out.
Together.
We have to.
“But I do believe
That not everything is gonna be the way
You think it ought to be
It seems like every time I try to make it right
It all comes down on me
Please say honestly you won’t give up on me
And I shall believe
And I shall believe” – I Shall Believe by Sheryl Crow
April 12, 2012
My son is in the middle of a complete sensory nightmare.
It’s his clothes. I think. I really don’t know.
I’m at the SPD Blogger Network trying to figure what’s going on.
Will you come over and help me?
Feelin' Alright. Not feelin' too good myself
Click HERE to help me and my son get through this.
