Back to School Sales and Must Haves for Your Sensory Kid

The leaves are turning.  There is a chill in the air.  The clothes are all picked out and their backpacks are crammed with pencils and fresh white paper.  The excitement surrounding the new school year is palpable.  

But for some of our sensory and spectrum kids it is a very anxious time.  They don't know what to expect.  They don't know what will be different this year and what will be the same.  Your son may be thinking about that awful sound made by the fluorescent lights in Room 32.  Your daughter may be worrying about how she got in trouble last year for needing to tap her fingers to think.  Your child may be thinking about how embarrassing it was to be moved to the front of the class because he kept leaning in his chair.  Your little girl could be dreading how hard mornings will be following her many restless nights.

For the families going into this year knowing their children may need a little help, I've put together a list of back to school sensory deals and products.  Some of these we have used personally and some have been recommended by other families seeing their benefits.  Before investing in anything you plan to use for your child for school use ensure it is allowed or can be added to their IEP or 504 as a necessary accommodation.

Chewigem USA

So many of our kids need oral stimulation, especially while trying to focus or when anxious and my son is no exception.  We have had weeks in which we had to throw away his shirt at the end of every single day.  When another child is upset he chews his shirt.  When he is bored he chews his shirt.  When he is worried he chews his shirt.  Having some alternatives for him to chew has been so helpful!  He still seems to prefer the shirt, but thankfully he will chew on a Chewigem option instead when it's offered.  He likes the Hexichews, but there are also more discrete options that can be worn as necklaces.  Chewigem USA has given us a special code for our followers to save 15% off their entire site if you want to check them out!  Code expires August 31st.

https://www.chewigemusa.com/

Use Code: B2S 15

Heartek Ear Protection

I can honestly say we would not have made it through last year without our son's earmuffs for noise.  He wears them on the bus.  He wears them at lunch and to assemblies.  He also has it written into his IEP that they will be available to him and he can use them any time he asks for them.  Often, just knowing that he has them in his backpack lowers his anxiety significantly.  You can get the ones we use on Amazon or the Heartek site has quite a few discounted styles right now.

www.heartek-usa.com

HICKIES No-Tie Shoe Laces

Both my ASD son and my typical son have a hard time with laces.  My oldest didn't want to wear velcro this year and my son on the spectrum no longer fits in most of the shoes with velcro.  Thankfully there are a ton of options out there now for adaptive laces!  HICKIES is having a back to school sale right now and you can get kids no-tie laces for $9.99.

www.hickies.com

Senseez Vibrating Cushions

Our oldest isn't on the spectrum but he is definitely a sensory kid.  He often talks about how he needs to move or pace to think.  He taps his fingers on the desk, wiggles in his chair and walks back and forth when he is deep in thought about something.  This year we are trying out a Senseez vibrating seat cushion for him.  He just started using it at home and it helps him a great deal with focus.  He even said that it satisfies that part of him that has to move.  We will just be using it at home for now, but I can definitely see how it would benefit a child in a school environment for focus or calming.  If you wanted to try one out they are having a back to school sale right now and you can get 20% off your order!  Don't forget to use the code.

Senseez.com

CODE: school

Bouncy Bands

In the same realm as the vibrating cushions are Bouncy Bands; allowing little feet to move while the rest of the little body stays still.  Kids can get their wiggles out without distracting other students around them.  We haven't yet used these personally, but I know many teachers who love them for their classes!  Bouncy Bands is giving our readers 15% off if you buy within the next two weeks.  Don't forget to use the code!  

Bouncy Bands
CODE: B2SCHOOL

Therapro Pencil Grips

One of our son's biggest academic struggles is fine motor and grip.  It unfortunately has made it hard for him to stay anywhere close to his grade level with his writing.  Thankfully, we have seen significant improvement over the last year in his writing through occupational therapy and accommodations.  One of those helpful accommodations has been finding him the right pencil grip.  We love these Zaner Bloser grips from Therapro, but it's all about finding the right grip for your child and they have a big selection.  

You can get free shipping right now for orders over $35.

Pencil Grips at Therapro

Wiggle Disk or Wiggle Seat

There are a number of variations of the wiggle seat.  This is an inflatable wedge or circle that goes on chairs and offers feedback and input for kids who have a hard time sitting still.  When our son was younger he used one of the smaller ones and it definitely kept him seated for longer periods of time as he was still able to move and get the input he needed.  AKC Kinetics has one on Amazon right now for $12.99 and you can use a $2.00 off coupon too!

Stability Seat on Amazon

Handheld Fidgets

The selection of fidget possibilities is endless and now that the fad is dying away a bit you can get them fairly cheap!  My oldest loves the spinners and the cubes.  Fidgets give busy hands something to do while kids are thinking or listening.  You can get fidget anywhere and everywhere; just make sure they are allowed in the classroom if they are needed.  Oriental trading has a sale right now on a six pack of the fidget cubes.  Just in case one or four get misplaced...

Fidget Cubes at Oriental Trading

Weighted Blankets

 I'll close with a product that at one time was a lifesaver for us because it saved the entire household countless hours of SLEEP.  Coming down from an overstimulating day is hard for our sensory kids even when they are tired or overtired.  A weighted blanket can help not only bring them down, but it can keep them down and cut down on night wakings.  It gives our son a feeling of security and offers the pressure and input he needs for his body to stay at rest.  Make sure you research the weight appropriate for your child's weight and size.  There are a couple sale options for blankets right now.

Check out Sensory Goods.  They have a special going and you can get your weighted blanket 20% off!

Weighted Blankets at Sensory Goods
CODE: FB 20

Another great option for a more personalized blanket is JudysLilQuiltFix on Facebook.  She made our son's blanket years ago and it has held up great through countless washes, trips and moves.  Send her a message and mention the Back to School sale and get $5 off your blanket!

I hope you and your child find some of these products helpful and useful.  Keep in mind everybody is different; so what works for one child may not work for the next.  It's mostly about trial and error and finding the right fit for your child's sensory needs.

Here's to a great school year!

Life being hard doesn't give you a pass to kill your autistic child

Did that headline make you sick?  Do you know what will churn your stomach even more?  Google "Number of autistic children killed by their parents".  Look at the faces, the names and the numbers just in the last year alone.  It's sickening.  And equally sickening is the aftermath; the excuses for the parent and the sympathy.  Not sympathy for the murdered child, mind you, but sympathy for the overstressed parent who murdered the child.  And, sadly, when a disabled child is killed even the ensuing trial becomes more about the parent's struggle raising an autistic child rather than about justice for the victim.  

Every time one of these tragedies is reported I try to understand the logic behind all of the "This is awful, but it is really hard" comments.  And I wonder if maybe someone who has felt desperate and out of control and helpless as a parent to an autistic child is sympathizing with the feelings that could lead up to such an evil act, but not excusing the act itself.  I get it, but that's such a dangerous path and slippery slope.  When we do that we lose sight of the victim's worth and the victim's struggles.  When we relate to a murderer's possible feelings because we are in a similar life situation and start to rationalize we are indeed defending their actions, not just their feelings of desperation.  

Even with our rhetoric in talking about day to day struggles raising a child with autism it's so important to be conscientious of how it is framed.  Anyone who has followed this blog for any amount of time knows I do not shy away from talking about the hard stuff.  But should the focus be how hard it is for me or how hard it is for him?  When we only focus on how autism negatively affects us, the parents, we are perpetuating the stereotypes and stigma that autistic children are a burden.  When autistic children are seen as a burden they are seen as disposable.  

Imagine if a similar argument was made regarding a typical child who was killed by his parent.  "I know it was wrong and I'm not making excuses, but that kid was really hard to raise and was always getting into trouble.  He had a terrible attitude.  Maybe the mom just snapped.  Who are we to judge?"

That sounds ridiculous, right?  Because it is.  There is no amount of parental desperation that justifies murder.  Ever.

The other aspect I see often brought up in light of these tragedies is the lack of support and the failures of a broken system.  Those are valid concerns and ones that probably should be addressed when we see an epidemic of a certain community of children and disabled adults being perpetually targeted by their caregivers.  Maybe some of these children would be saved with more resources in place.  It's likely that with better support and access to care we would see a drop in such cases.  That is a fight we can all keep fighting everyday, but when we make murderers our example for the community's need we are transferring the blame from them on to the system.  

The system is often failing families and it can be very hard, but parents must do everything in our power to protect our children.  They are worth it.  Their lives are worth living.  They deserve to live and those taken did not deserve to die.  They deserve justice.  And should be remembered and mourned; not just as murdered autistic children, but simply as murdered children.  These parents are murderers, not victims.  Their dead children are the victims.  

Like Mine

We met at a park

I wondered right away

But I knew for sure over time 

Your boy’s a lot like mine

I saw his explosive moments 

And the look of defeat in your eyes

I wanted to tell you 

Because I’m not sure you know

I saw his tears over the wrong color cup

I saw the panic in your eyes 

I wanted to say I’ve been there 

But I don’t know if you know

As kids around him play he lines up his toys

You play it off and laugh

I want to ask the question

But I’m not sure you want to know

Your boy talks in sentences

Your boy does okay in school 

So I’m not sure you see

I see how you look at mine

Because your boy doesn’t flap and rock

He doesn’t chew holes in his shirts

Your boy doesn’t say the same word over and over

Or need headphones to get through the day

After seeing your reaction to my boy today

It became clear to me 

You don’t want your boy to be

A lot like mine

I know you have heard of autism...

I know you have heard of autism. I know you may think you know what it means. I know you probably know of somebody who is on the spectrum or has a child on the spectrum. I know you have probably seen feature stories or read articles about amazing autistic minds and talents. But I wonder if you know much beyond what you have seen on a TV show or what you’ve heard in passing.

Do you know autism can be nonverbal, but it can also be very verbal? Do you know autism can be anti-social, but it can also be very social? Do you know autism can be debilitating, but it can also be enabling? Do you know autism can be sensory defensive, but it can also be sensory seeking? Do you know autism can mean aversive to touch, but it can also mean needing touch and pressure?

Do you know autism can mean brilliant, but it can also mean challenged? Do you know autism can mean gifted, but it can also mean in need of special education? Do you know autism can look like rocking and jumping and flapping, but it can also look calm, collected and introverted?

Do you know autism can occur by itself, but it can also be accompanied by other disorders that can make it that much harder?

Do you know someone with autism may be able to read and write, but may never be able to talk? Do you know someone with autism may be able to talk, but may never be able to read and write?

Do you know autism can make it next to impossible to sleep? Do you know autism can result in aggression when over-stimulated or dysregulated? Do you know autism can mean overly friendly and unable to read social cues?

Do you know autism can mean speaking too loudly for the venue, but can also mean speaking too quietly to be understood?

Do you know autism can bring on extreme interests, but can also mean extreme disinterest in surroundings, people or toys?

Autism can mean he can’t look you in the eye, but it can also mean talking to you just a couple inches from your face or reaching out to hold a stranger’s hand.

Autism can mean bolting and wandering and flight risks, but it can also mean debilitating anxiety that makes it impossible to leave the house.

Autism can mean one day he needs snuggles at every opportunity, but the next day he may scream he hates everyone over and over again.

Autism can mean not being able to dress oneself, but can also mean taking off clothes when angry or uncomfortable.

Autism can mean slower processing time, but can also mean unbelievable memory.

Autism can mean excitement for life and unmatched joy, but it can also mean lifelong struggles and sometimes needing lifelong care.

Did you know autism is so much more than we know or understand and the spectrum varies widely from person to person? Did you know the challenges and joys of living with autism vary widely even from one day to the next?

Maybe you didn’t know. But now you know. And the next time you might be tempted to make a judgmental look or comment you no longer have the excuse that you didn’t know.

Too Real and Too Tired For Nice

This morning while trying to drop off my child at school I stood in the middle of an office and watched him flail his body, try to throw things off desks and lunge at myself and his teachers.  While office staff looked on gaping and his teacher tried to separate his body from mine I heard him screaming he was going to kill us all.  Damn.  Did reading that hit a nerve?  I'm sure it did for all of them too.  Every time he screams terrible things that he has far too little cognitive ability to comprehend, I wonder if today will be the day that something he screams will get him arrested or shot.   That's our reality.  That's our autism.  I am scared to take him to stores.  The last time I had to carry him kicking and screaming out of a store the police were called.  They thought I was kidnapping him.

And the harder part is that when people think of autism they usually think of nonverbal or Asperger's.  They don't think of what a verbal meltdown brought on by anxiety or overstimulation could look or sound like.  Every time I am handling him and trying to keep his body safe in a parking lot I'm worried a video of it will end up on Youtube with a caption "Kids these days are assholes..."

And because this is our reality it gets really hard to care about anything else beyond the basics when everyday feels like a battle.  I am worried how this will go down when he weighs more than I do.  I worry how it will be perceived when developmentally he is eight but his body is sixteen.  Many days every ounce of my being is poured into trying to ensure he has the highest quality of life, trying to ensure he meets his highest potential and trying to keep him safe.

So, if he loses therapy because of an insurance issue or loses mental healthcare due to a coverage issue, I'm going to be a bitch to every person I talk to who failed him in that process.  If he spirals out of control and has to be institutionalized because he was not given access to what he desperately needed, I will knock down every door and blaze every trail to make sure he and others have access to it in the future.  

If there is a school safety issue and my kid's safety is at risk, I don't care how much good your school has done for him educationally.  Autistic children die in this country every single day due to seemingly insignificant oversights.  Safety oversights KILL OUR CHILDREN.  It is a BIG deal.  And if I don't feel like you understand it is a BIG deal I won't pull any punches when we discuss it.  And if you think I'm a mean, ungrateful parent so be it.

After nearly two years of a doctor telling me he'll grow out of it or it's just a phase I learned the hard way that professionals do not always know better than parents.  Now, if there are doctors or therapists who will not listen to our concerns I make my point louder and clearer and if they continue to ignore me, we move on to someone who will listen.

If you are a friend and asked me how my day was going these past couple weeks, I couldn't even pretend it's going okay.  I couldn't even pretend I'm not terrified and exhausted and I appreciate the friends who are good with a raw report of our reality.

Overall, I try to be a nice person, but there are times when I am too fed up, too tired and too worried for nice.  

   

   

Someday, I Won't Have to Write About Autism Anymore

Today, sweet boy, was a good day.  There were very few meltdowns.  There were a lot of snuggles.  You used your words to communicate your needs and frustrations.  You played with your sister nicely and compromised when needed.  And we had a great outing that left you smiling from ear to ear.

You had a moment of excitement at seeing an unexpected favorite thing while we were out and about.  You flapped.  You jumped up and down, yelled with delight and ran towards it.  You only saw the exhibit.  Not the people around it.  You didn't see the mother shield her daughter when she thought you got too close (you weren't too close).  You didn't see her smile turn into a disapproving frown when your voice was a bit too loud for indoors.  You didn't see her eyebrows furrow with a perplexed look when you kept saying the same phrase over and over.  You didn't notice how quickly they moved on to the next exhibit or the ones they skipped to get away from us more quickly.

I saw it and I'll admit it took a little bit of joy away from a moment that should have been nothing but joyful.  It didn't bother me in that I felt judged as a parent.  I got past that feeling long ago.  It didn't bother me that her kids were quiet and well-behaved and she clearly thought you weren't.  To each their own.

But it bothered me that she didn't know.  It bothered me that people expect you to wear an "I'm autistic" sign on your head for them to be kind to you in those situations.  It bothered me that she appeared to be scared of you because your mannerisms are a bit different.  It bothered me that I didn't even get a chance to tell her about you or explain you were just excited.  It bothers me that as much as we advocate and explain that there is still a whole world of people who don't know how autism can look.  And maybe they don't want to or care to know.  The optimistic part of me wants to believe that they would care about you and they would accept you, but they just don't know yet.  There aren't always great moments to educate the masses while we are trying to get through our day.  But we will try and we will keep explaining, and educating and enlightening at every chance we get.  And I'll keep writing about you and your beautiful mind until everyone knows.

Off Meds and Scared Shitless

It's been awhile since I've written.  In fact, it's been so long that my last post adamantly defended our decision to medicate our son.  Between then and now there have been some pretty major developments.  We've moved across the country.  We've started a new school.  Our therapy schedule has been turned upside-down.

All of our kids have rolled with all of these changes beautifully.  But for our son on the spectrum, I'm especially proud of how well he has done.  We've had some hard days.  He's been confused.  He's been angered by some of the changes.  He's been elated by some of the new experiences.  He's been saddened for the friends, teachers  and therapists he's left behind.

But, overall, he's done well.  A new school schedule has meant he's getting up at 5:45 to catch the bus.  It was such a hard adjustment.  So hard that he was regularly falling asleep in school for large chunks of time.  We asked his psychiatrist about lowering his meds. He was on board.

As we lowered them I saw some positive changes.  We wondered if we are in a place now in which he would do better without meds.  After all, he's had countless therapies and has progressed amazingly with coping and communicating.  We have been down this road before but I seldom talk about it.  Because the positive changes of reducing meds were followed by a terrifying fallout of psychosis, aggression and self injury.

And I was filled with guilt for taking him off or for putting him on them in the first place....I wasn't really sure.  And then different meds were tried instead to help him cope.  None helped.  So he was put back on an antipsychotic and I cried.

I know what we say about medication and stigma.  It's alive and well.  But this grief was so much more than that.  It was a grief that acknowledged that this is my child off meds and he cannot function, he's miserable in his own skin.  And it's a heavy reality.

Fast forward to now.  He's off of everything because after talking to a new doc I discovered last time around the fallout could have been withdrawal.  It could have been the new sleep med.  It could have been any number of variables.  Of course, it could also have meant he really needs it still and that is yet to be seen.

So, there you have it.  And I haven't said it out loud because I feel like it will be perceived as though I did the wrong thing putting him on it then.  Or we did the wrong thing taking him off of it now.  Or I will be eating these words in a month when we realize there is no other way right now.

But I have to talk about it because I want you to know there may be a season in your child's life in which medication is a godsend for their peace of mind and ability to function.  There may be another season in which they thrive without it.  This is not an "I've see the light and medication is evil" post. Not by a long shot.  For a time it saved his life, it saved his family. It may very well be a necessity again.  As he's gone off of it I've asked him everyday, "Do you feel happier?  Do you feel more in control?  Do you feel out of control?  Do you feel too fast?  Do you feel too slow?"  And he can answer. And I know that's a luxury not every family has.  They were the same questions I asked him when he went on meds or when we changed meds.  I just want to know what's best.  I want to read into his actions and listen to his words and just do what's best for him.

If you get nothing else out of this piece please know this: the decision to medicate is not taken lightly.  Nor is the decision to stop a medication.  We know the gravity of these decisions.  They weigh on us every minute of everyday.  Right now it's hard, but we're okay.  And I think it's the right call.  A month from now I could hate myself for making this decision.  I wish to god we all had a crystal ball.  But we don't.  We love our babies and will move mountains to help them feel whole, regardless of which path gets them there.

Does He Look Like A Zombie?

Every time someone writes about some children needing medication for their mental health there are always at least a few comments, verbatim:

"I don't want my kid to be a zombie."  

"I would never medicate my child!"

"There are so many other options."

"Parents who medicate their kids are lazy."

So I have to ask....Does this look like a child who is drugged?  Does this look like a kid without emotion whose life has lost excitement and joy?  Does he look like he's zoned out or miserable?  Does he look meek or as if all of his uniqueness has been stripped away?

I didn't think so.  I see a child who can go about his day without constant anxiety over what might come at him next.  I see an individual who jumps and rocks and laughs.  I see a boy who can now function, concentrate and attend long enough to learn and discover the world around him.  I see a brother who can now enjoy playing with his siblings because his aggression and impulse control are so much better.  I see someone who still experiences every emotion and still has some hard days, but can now get through those days in a more constructive way.  

I don't discount that some people have had bad experiences.  I don't doubt some kids have been medicated when it isn't needed.  I fully understand some individuals have been medicated against their wills and feel strongly due to that experience.

But please don't apply one experience to every other situation.  Every child is different and has different needs.  We would never recommend just changing diet or hoping for the best for a physical illness; why is a mental illness any different?

I don't see a zombie.  I see a happy boy who I love and would do anything and everything to support.

My Kid's Disabled, I Can't Vote Red Anymore

I have always believed that one's political views are the result of a compilation of his or her experiences.  I consider myself an independent because I simply can't get on board with all of the main pillars of either major party's platform.  Although I have leaned Republican in past elections (on foreign policy, military budget, states' rights, and fiscal conservatism), I have realized over the past couple of years that I can no longer vote for the majority of Republicans.  

Why not?  It's simple.  I have a disabled child.  And Republicans are doing everything in their power to make his life harder.  Before being immersed in the special needs world, I didn't know what I didn't know.  I didn't know how much families with disabled children are affected by legislative decisions and how life altering it can be when services are taken away.  Many of the state early intervention programs that got my autistic child to where he is today are now in jeopardy because Republican lawmakers cannot see the value in giving disabled infants and toddlers therapy now allowing them to reach a higher potential in the future.  The outpatient therapy that has helped him so much is consistently harder for families to access.  With the repeal of the ACA many families will lose their only chance at accessing life changing therapy for their autistic children.

The proposed cuts to Medicaid not only affect families who are in a specific income bracket; they affect future disability benefits that our children will need as they age out of the education system.  These cuts also impact families who have other insurance but use Medicaid to fill gaps in coverage for their disabled and chronically ill children.  How can these lawmakers look their constituents in the eyes when they are knowingly pulling the rug out from under their families?  And many Republicans are fighting against my son's quality of life so openly and so blatantly that I can only conclude they simply do not care.

As much as I understand the argument for states' rights, after living in states that could care less about educating or providing services for their disabled populations, I can't argue that federal oversight, protections and enforcement of those protections are absolutely necessary.  When you have entire states that care more about their high school football program than staffing their special education classrooms, one can't gloss over the disparity in special education from one state to the next.  Having lived in multiple states and having dealt with multiple educations systems, I can tell you that any time we are heading to a red state I cringe and I worry about what will be available and if my son will have access to a free and appropriate education.  

The new administration is touting school voucher programs as if they will be helpful to those in the disability community, but we have seen the results in states with robust voucher programs in use and they aren't good.  Charter schools are performing just as bad as public schools throughout Michigan and now public schools are even more underfunded than before.  Not to mention that a number of charter schools will not accept disabled children.  And most voucher systems for disabled children require parents to sign away their education rights and have no input on their kids' education.  What a joke.  As a country we have worked for years towards more inclusion of our disabled students and now our Department of Education wants to send all of the disabled kids to special schools rather than supporting them in an environment with their typical peers.  We are going backwards.

As a military spouse, I do not only worry about my disabled child's current access to education I worry about services after he ages out.  We have to decide where to retire at some point and as much as I love the people and atmosphere of many of the states in which we have lived,  I can't bring myself to commit to settling down somewhere that will offer him absolutely no support when we are gone.  Some of the states we love the most have done away with all of their mental health support and some specifically have said their residency programs will no longer accept autistic individuals.  I can't really wrap my brain around how archaic some states are when it comes to their disabled and mentally ill populations.  But the one consistent thing I see over and over again with lack of services, lack of appropriate education and lack of healthcare is RED.  Red state legislators are perpetually failing their constituents in these areas and they don't seem to care. 

Yesterday, the House passed the AHCA, a bill that would allow states to opt out of any mandated coverage for those with pre-existing conditions (pre-existing conditions that include everything from autism to pregnancy).  The bill also would greatly impact Medicaid funding for disabled individuals.  Every medical, disability and autism organization has expressed opposition to the AHCA and what it would mean for our most vulnerable populations.  And yet enough Republicans are okay with that that it passed the House and in doing so they made it perfectly clear to me that I can no longer vote Red in good conscience.  And for those Republicans who voted against this heinous bill, good for you, but your party is still disappointing so many of us.  

I have found that a number of friends in the disability community feel the same way.  Regardless of where we stand on other issues, we can't get past the Republican party's attack on Medicaid and education.  The AHCA now goes to the Senate and I hope against hope that I am pleasantly surprised and enough Republican Senators will stand up for my kid and vote NO.  But, sadly, I have lost hope that the Right cares about my kid at all.

*****Added Edit*******

I shut down comments on this post for a bit because I don't have time to respond to every angry liberal in the world, but I would really much rather have a discussion. I have voted for Republicans, I have more often voted for Democrat or Independent candidates (even before having a disabled child).  Over the last few years the GOP's attack on the disability community has felt very personal and solidified my choice not to vote for them at any level, regardless of my stances on issues other than healthcare and education.  Perhaps, rather than jumping all over this post the left could see it as an opportunity to bring the insane number of people in the disability community still voting red into the fold?  I am very socially liberal and very empathetic. But there are a number of people who may not be and they need to see that their vote does affect THEM even if they are only concerned with their own family's situation. There are also a number of people who would never know the ins and outs of Medicaid funding and health insurance nightmares unless they are impacted.  Then there's a lightbulb, not just for their own family, but they realize many families are impacted by Medicaid cuts and an ACA repeal.  People are not going to agree with every part of every party's platform, but there are a huge amount of voters in the the disability community that are still voting red and this post is written to identify with them.  Perhaps from the title everyone is assuming I woke up one day with a disabled child and a sudden change of heart.  Not the case for me,  but with a different title and a different tone, it wouldn't have gotten the attention it needs.  And I hope others in the disability community will realize that voting red is voting against their kid and/or against themselves.  Even with the many many angry comments (that really aren't fazing me because most of them I didn't read and for the ones here on the blog they are based on a lot of incorrect assumptions) this post is still accomplishing everything I wanted it to accomplish as a number of people much more conservative than myself are messaging me "Wow, the GOP really doesn't support my kid's best interest so even if I am _____ (fill in the blank: Christian, Pro-life, Military), I can't vote red."   So, you're welcome.

   

An Autism Mom's Review of Sensory Swim

In February of last year we enrolled our son in the Sensory Swim program.  A few months after starting with them, I wrote an article about the progress I was seeing and their methodology with autistic students.  We are finishing up with Sensory Swim due to a military move and I wanted to offer up a final review of our time with their program.  Drowning accidents kill way too many autistic adults and children and we, like many autism parents, worried for our son's safety.  Along with autism, our son has a number of deficits that work against him in a traditional swim lesson setting.  He has a speech delay, so he does not always understand and process verbal instruction.  He has ADHD and needs constant engagement and reinforcement to stay on task.  He has severe dyspraxia, which affects his core strength, fine motor and gross motor skill sets.  He has sensory processing disorder, which makes him very sensitive to sounds and other stimuli, making a number of environments hard for him.  He has severe anxiety and severe separation anxiety, making any new settings or working with new people difficult.

Initially I was very concerned that our son would not go with Andrew and Mary into the pool unless I was right there.  I also had a lot of anxiety myself that they would not be able to hang with him and that he might get aggressive or be too hyperactive during his lesson.  I was concerned for his safety in the water without me right there.  After just a few sessions most of those concerns were alleviated.  He enjoyed the water so much that separating from me was not that big of deal for him.  I also noticed that Mary and Andrew had a very good rapport with him and their other students.  They could not only handle his hyperactivity, but they expected it.  

We watched him over a few months get much more comfortable in the water.  They only worked in the deep end so that it forced him to attempt to tread water.  He learned how to hold his breath and "blow bubbles out" when he would go under water.  He wouldn't tolerate goggles, but got more comfortable with water in and near his eyes.  I thought, initially, well even if he doesn't learn to swim at least now he understands that he needs to try to get to the ledge or something to hold on to.  I thought at least now he knows not to breathe in if his head is under water.  And with how week his core is and how rough his motor planning is (at six he still cannot pedal a tricycle) I really did not expect much more.

Over time though, he started going a few inches further each time.  At first they would propel him and wait for his natural instinct to take over.  As he started getting a feel for it, over multiple sessions, they would back up further from the wall and encourage him to paddle heard enough to get to the wall.  They worked with him on kicks and paddling his arms separately as he couldn't seem to do it at the same time.  But eventually, he started kicking while he was paddling.  Once he got a little stronger and a little more sure of himself they would have him jump to them in the water.  They would back up a little more each time and he didn't seem to even realize that he was swimming.  He built on this and before long was swimming the width of the pool without any assistance.  It was really an amazing progression to watch.

After using Sensory Swim for about 15 months and observing them with my son and other children these are the things I like:  They don't shy away from harder cases or kids that hate the water and they go at the child's own pace and validate the child's anxiety.  They work with all age groups and meet the child where they are developmentally.  They know how to work with nonverbal, hyperactive and aggressive children (many swim programs won't even consider teaching children with these issues, regardless of their disability).  They use the deep end (where they can still touch but the children can't) for lessons and this seems to force the issue for kids who would otherwise be hesitant.  Once the child is starting to get it they give the child space to be independent in the water.  They will stay close by for safety purposes, but they will stay out of sight lines, thus encouraging the child to do it on their own.  Mary and Andrew are teaching seminars, printing materials and books, and answering questions for anyone who cannot get lessons with them but wants to know their methods.  They genuinely want to help our community and lessen the number of autistic children dying in drowning accidents every year.

I wish that Sensory Swim was available in more areas of our county as I truly believe they have the right attitude and methodology to help so many in the autism community learn to swim.  Because they have so much experience with special ed students and travel weekly to help as many families as possible, their lessons are more expensive than traditional group swim lessons making their program less accessible for some.  But for us, the proof is in the results and it was totally worth it.  I cannot put a price on one less thing to worry about when it comes to my autistic son's safety.

    

**I have not received any compensation, products, or services in exchange for this review.  I simply want other families to know what worked for us.

What About Me?; The Story Behind Our Autism Sibling Book

A little over a year ago our eldest son started having a lot of behavior problems both at home and at school.  He has always been our easy going kiddo and definitely the most mellow of our bunch, so imagine my surprise when I was called in for a meeting with the principal, the kindergarten teacher and a counselor to address out of control behaviors and outbursts that were occurring in the classroom.  What??  We had been seeing some emotional moments at home, but most of them seemed reactionary to living with a brother on the spectrum who has a lot of behaviors himself.

As I talked through the meeting with the school (a meeting at which they recommended therapy for him) it dawned on me that I was so busy tending to our autistic child's needs and behaviors that I had lost sight of how hard living in our home must sometimes be for a child.

"Are there problems at home?" they asked.

Wow was that a loaded question.  I explained, "Ever since the last move our autistic child's behaviors have been pretty bad.  There are a lot of mornings before school that he screams the entire time I am trying to get him ready.  He will go after me.  He will sometimes go after them.  Going from that to walking through the school doors ten minutes later, that's probably pretty hard..." my voice cracked.

His teacher spoke up, "He talks a lot about needing to be perfect and needing to do everything the right way.  He seems to get down on himself a lot.  His emotions lately have just been right at the surface and it takes very little to bring him to tears."

"He's definitely had to grow up fast and be the bigger person all of the time.  But he's usually such a happy kid.  I don't even know what to say.  We'll talk to him."

I didn't know how much to divulge. I was definitely being honest that I didn't know what had changed, but maybe that was the problem.  Nothing had changed.  For years Brennan (who is only a year older than his autistic brother) has had to hold it all together.  For years he has had to go into another room and lock the door when his brother is having a meltdown and trying to go after him.  For years therapists have come over multiple times a week to play with just his brother.  For as long as I can remember he has done everything in his power to keep the peace.  Even if that meant giving up his favorite thing or missing out on something he really wanted to do to avoid a public outing nightmare.  Even with all of that, I really thought he was handling it in stride.  He talked about knowing his brother is different and that he needs more attention and that sometimes he has different rules.  He always said he understood when birthday parties had to go a very specific way or when we couldn't watch the movie he wanted because his brother couldn't stand the sounds in it.

After talking to the school and an outside therapist I realized that although Brennan was talking a good game, there is only so much of that that a seven year old can truly grasp.  He knows things have to be different, but he won't really grasp the depth of why his brother is the way he is for quite some time.  And all of this time the resentment, anger and sadness about everything he has seen and everything he goes through have been simmering right under the surface.  He loves his brother and never wants to say when his feelings are hurt or when he is angry his brother takes something from him or hits him, because he knows it's not his brother's fault.  But that doesn't mean it's easy.

As I was looking for resources to help him understand everything he was feeling, I realized there isn't much available for autism siblings.  I saw a number of books that explained autism to siblings, but none that worked through these very real issues he was having and that I assume many autism siblings feel.  

After realizing how much all of this was weighing on Brennan he started counseling and he and I sat down and talked.   We talked about times he has been sad about having to leave something he was enjoying doing because his brother was upset.  We talked about how it makes him sad when he sees his brother hit me.  We talked about how far his brother has come and how now playing together is a lot easier than it used to be.  He mentioned that he loves helping his brother and trying to make him feel better when he is upset.  I asked him if he wanted to write down some feelings.  I told him that it always makes me feel better when I do.

I looked at what he wrote and some of it broke my heart and some of it made me very proud.  I told him there were a lot of other kids probably feeling the same way, but maybe they need a way to talk about it too.  He was very open to the idea of sharing his thoughts and feelings about being an autism sibling, but as we worked out some of the harder memories there were some tears.  At one point he said talking about certain memories was too painful and he got up and walked away.  He later came back to it and said he knew it was an important part of his story.

We formed his experiences and memories into a beautifully illustrated story about the up and downs of being an autism sibling.  As our illustrator Emily Neff brought the story to life, I couldn't believe how moved he was by his own story.  We kept our message positive, but we didn't shy away from the hard stuff.  We hope that What About Me? will help a lot of families that work everyday through the realities of living in an autism household but always try to see the beauty in being an autism family.  We are incredibly proud of Brennan for the person he is and the person he will be and much of that has been shaped by being an autism sibling.  We see in him compassion and empathy well beyond his years, and I am so grateful he was willing to share his story to help other kids.  

Now available: What About Me? A Book By and For an Autism Sibling