Monday, November 13, 2017

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.

Monday, October 30, 2017

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.

Tuesday, June 6, 2017

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.

Friday, May 5, 2017

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.

Saturday, April 29, 2017

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.

Wednesday, April 12, 2017

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.  

Thursday, February 9, 2017

When Life is Doom and Rainbows

Every time I write about something that is a harder part of raising an autistic child I am accused of painting a pessimistic picture of doom and gloom.  Every time I write about some amazing progress or breakthrough or positive aspect of autism I am accused of painting an unrealistic picture of butterflies and rainbows.  I guess that's why I always try to share the whole story.  But life, much like a post, will always present what we choose to see.  We can choose to see the good or we can choose to see the hard.  There are days when the hard overshadows the good and that's okay too.

I could tell you that this morning we got back evaluation results and our autistic son's speech is much better off than it was a year ago.  I could tell you that this morning he had a normal back and forth conversation with our school secretary and it made my heart smile.  I could tell you that he told me he loved me when he first woke up and that that's happening more and more everyday.  I could tell you that he was invited to a birthday party by a friend outside of school and I could tell you how special that moment was.

I could also tell you that upon arriving to occupational therapy today he threw himself down in the hallway and screamed that he hated me.  I could tell you that he nearly kicked through a glass door and that his sister had to be taken by another therapist to safety while we blocked and managed his meltdown.  I could tell you that right after that polite conversation at school he saw a teacher he didn't want to walk with and bolted away from me down the hall.  I could tell you that while I gathered him up he screamed obscenities and tried to bash his head into the cement wall. I could tell you I had tears in my eyes as I left the school.  I could tell you that while I'm thrilled we were invited to a party we most likely will not go because his behavior has been too impulsive for me to chance it.

All of that would be accurate.  And that was just this morning.  Our current status is not butterflies and rainbows and it isn't doom and gloom.  We take the doom a day at a time and we rejoice in the rainbows at every chance we get.

Tuesday, January 10, 2017

Military Autism Families Fear Loss of Services Amidst New TRICARE Policies

An ABA therapist working on fine motor skills
with a military child on the spectrum.
It's the same fight, different year for many autism families across our country.  As TRICARE rolls out new policies the ABA and military autism communities are scrambling to figure out what it all means and unfortunately it doesn't look good.  ABA is an autism behavior therapy that is currently one of the only treatments endorsed by the medical community to address maladaptive behaviors, help overcome deficits and delays, and provide autistic individuals the tools they need to communicate their wants and needs.  This therapy has been known to do everything from giving a nonverbal child words to reducing severe aggression.  It can reduce dangerous behaviors such as bolting and self-injury.  It can potty-train an 8 year who is still in diapers.  It can teach an autistic child how to feed and dress themselves.

Many autism families will attest that ABA therapy is value added.  Bonnie K. (autism parent) describes what a game changer ABA has been for her family: "ABA was a huge help for our family. My son went from combativeness and aggression to cooperative and able to attend school."  Because of similar testimonies and clinical findings most healthcare and state services are moving in a direction that will get more families covered (thanks to the tireless lobbying efforts of Autism Speaks and other organizations 45 states have now signed on to autism insurance reform).  While most state and private insurers are moving towards more coverage for autism families, TRICARE is making it more difficult to access the autism services it already covers.  TRICARE requires more ABA provider credentialing than any other insurance, which is costly and time consuming for providers making TRICARE patients harder to serve.  Their new policy (which was released at the end of November and started implementation on January 1st of this year) mandates providers administer and submit a behavior inventory every year for services to continue. This is in addition to the re-authorizations that need a specialist referral and severity level to be submitted every six months that families are already burdened with acquiring.  Many families have already had reauthorizations rejected in the new year due to the short notice for the required behavior inventory.  Thus military kids are already losing services due to the new ill-planned policy changes.
A military child with autism works on gross
motor and transitions with his therapist.

And that's not the worst of it.  The policy that most worries providers and families alike is the new requirement that already diagnosed kids will need to have diagnosing evaluations re-administered every two years to continue services.  The evaluations must be administered by an autism diagnosing specialist, many of whom have waitlists 12-24 months long for an initial evaluation.  And many of whom will not entertain the idea of taking up a valuable 2 hour evaluation slot for a child who already has a diagnosis when so many kids are awaiting initial diagnosis so they can start receiving services.  The new requirement that seems to be seeking a new diagnosis for a lifelong disorder has everyone pretty confused.  Military spouse Cassie J. voiced her frustration with the changes: "I'm just dumbfounded at re-diagnosing every two years. Are they supposed to outgrow autism?! The need for ABA may change, but the diagnosis itself will never change if they were initially correctly diagnosed by a qualified provider." 

An ABA therapist practices walking in the "wrong" direction
with her client.  He has struggled for months with rigidity
as to which way they can walk from his home.
Despite military health care facilities' continual pleas that they are undermanned and unable to carry out such testing, TRICARE has moved ahead with the new policy.  Military families are already facing waitlists every time they move, possible regression every time they move and nationwide provider shortages.  Provider and autism parent Kerri A. states, "As a parent, waitlists are already long. My children have been without services for 6 going on 7 months since we moved."  Advocates point out with the new testing requirements access will only be further restricted.  While families wait to be retested many fear they will lose services during critical times.  Autism parent Kimberly G. cannot imagine what such a loss would mean for her son. "ABA has changed our lives. I went from having a non-verbal, angry, unresponsive child to a verbal, happy, connected child. We went from not being able to leave our home due to meltdowns and anxiety to being able to go grocery shopping and go to church. My child went from not interacting with peers to being a kid that loves being around others and asks to play with friends. He is thriving...Losing services would be detrimental to him right now because he is on such a good path. He loves his therapists and the change in him is remarkable.  We live in a small town with one ABA provider. They are overloaded as it is. Having to deal with re-testing and re-authorizations, especially as slow as TRICARE moves, would be a disaster for us." 

An ABA therapist practices nice play with
a military autistic child who has had severe aggression
towards his siblings.
This action on behalf of TRICARE and the DoD has families wondering if the government is intentionally trying to limit access to covered services.  This isn't the first time TRICARE has slashed autism services and military families have paid the price.  In 2014, TRICARE planned to cut autism provider reimbursement rates in half. (  Many providers would have shut down, downsized or stopped taking Tricare clients leaving families with no option for services for their autistic children.  Due to the outcry from military families and the media attention, the Pentagon back-peddled and postponed rate reductions.  They later came out with a lesser rate reduction based on cost of living. (  These reductions hurt families in low cost of living areas the most as smaller providers collapsed under the red tape and lower rates.  Because of all of these changes and the surrounding uncertainty many military families' services went on hold or disappeared.  The most recent NDAA (after many senators and organizations' advocacy efforts) reversed these rate cuts, but for some providers it was too late and those areas are now without services altogether.

Families and providers are hoping these newest ill-conceived policies will be re-evaluated as well.  They are calling their Senators and reaching out to the powers-at-be in hopes that their voices will be heard.  But how long will it take the DoD to realize how detrimental these changes will be for families?  And how many military autistic children (who already face a great deal of challenges) will go without critical services in the meantime?


I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...