The Tail Wagging the Dog: Tales of a Therapy Dog by a Bone Tired Mom

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Originally Published as The Tail Wagging the Dog 9/2015

Our dog is a bit of a sonofabitch.

He is playful and fun and sweet and well behaved.

Until he is not. And it always catches us off guard. 30 rounds of chasing the ball and joyfully bringing it back is often followed by a random and somewhat humiliating drive-by where he passes me up, runs 3 yards over and pees on the neighbor’s dog. The ability to look nonchalant and nonplussed at the same time after your dog just defiled someone else’s beloved pet is something that only the parent of a child with Autism can pull off with Merylstreepworthy street cred.

These times I breathlessly call his name while chasing him in circles with what I believe to be an audible background soundtrack of the Benny Hill theme song, I will often submit myself to the idea of giving him back to the service dog agency. Wally came to us in a somewhat miraculous way. I relinquished the idea of a service dog for A2 years ago when I learned that an application was only the first step in a lengthy and costly fundraising and training endeavor–a cruel (but necessary)paradox for a middle class family supporting a child with a disability. So when I saw a post in a local Facebook mom’s group about this agency’s need for foster families for their breeding program it was a no brainer. He had been through an advanced training program, came with the bright orange “do not touch” vest (that as it turns out that as a whole people just ignore) and most importantly, neither of my children reeled away from him in fear of barking or jumping. I could get used to having to drive out to the agency on a moments notice for his doggie duty or the fact that as an intact male he has a certain
“je ne sais quoi” that at times makes me feel uneasy explaining to groups of gathering and inquisitive elementary school kids.

While this dog is not trained specifically for A2, I had notions of things. Wonderful things. He would have the gumption of a sheepherding dog and rustle A2 back off to bed at night allowing all of us a full nights sleep. He would have Lassie-like receptive and expressive language skills to alert us if A2 wandered off…or fell in a well….or were lost in a canyon. He would be A2’s best friend and would play ball, endure endless tummy rubs and kiss away tears. But alas, Wally is not trained to endure colossal meltdowns or high pitched screaming  and A2 is obsessed with Wally’s nails needing trimmed and is also wholly mortified by his noisy and explicit grooming habits.

It often feels more like they are roommates who met out of necessity on Craigslist.

We wanted Wally to be for A2, but really, we wanted him to be for us. We needed extra eyes, extra sleep and fuller hearts knowing A2 had a friend. But its not looking like this part was meant to be.

The surprise twist here is that I did not anticipate that Wally is here for A1. We didn’t see that one coming at all. I have watched A1 learn to use inflection in his voice to get him to follow a command or gain his attention. Wally’s presence is forcing A1 up out of his gaming chair to take him on walks or throw a ball or frisbee. He is quickly using perspective taking in a way I have never noticed in questions such as “Do you think Wally likes me? How can you tell?” or “Mom, I feel so bad. I wish I could give him some of my sandwich. Is this how you feel about me with my Celiac when other kids are eating gluten around me?”

My beautiful, slow to warm boy who would rather not touch or be touched is slowly but voluntarily petting, patting, feeding and cuddling Wally. Though it took me years to understand and accept that A1’s needs and worldview are just very different than mine, I have always known that forcing my motherly agenda would only reinforce his discomfort. And in a very rare moment–maybe the second time in his life just last night while watching TV he scooted closer to me on the couch, leaned in, and rested his head on my shoulder.

So Wally, you are off the hook. I will humble myself as I once again issue the world’s most awkward apology and assure the neighbors that we have no intentions of keeping their dog since you have clearly claimed him as your own just as long as you keep doing the stealthy, stellar job you were given to do here with us.

Autism Awareness Month. G is for Genetics (and Guessing)

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(originally posted April 2016)

G is for Genetics

I get asked often what I think caused my child’s Autism.  I believe it is completely counterproductive to even consider it until such a time that there is solid evidence.  They are here now. I love my kids fiercely. Our struggles would be the same whether or not we knew the ‘why’ part.

Infection in mother during pregnancy, vaccine accidents,  overweight in mother during pregnancy, gestational diabetes, inadequate iodine, diagnostic ultrasounds, prenatal stress, advanced paternal age at time of conception, pesticides both before and after gestation…I’ve read those all.  And they all have the same message:  “Dad….Mom (but more likely Mom)…you did something…IT’S YOUR FAULT.”   These theories are also part of what drives the Neurodiversity movement.  That is, that individual differences and biological diversity are a normal and natural part of evolution and Autism is no different, so it is not something to be treated. Behavioral disruption is misunderstood communication and all the comorbid conditions such as GI/bowel issues, intellectual impairments, mental health issues are just that. Something not related directly to Autism (a whole other can of worms within our community….).

Regardless of your belief system…there is only one thing we know for absolutely certain: NO ONE KNOWS WHAT CAUSES AUTISM.

To demonize parents who make decisions you would not necessarily make is also counterproductive. 

As parents we have an instinct to protect our children. When a parent watches the baby she knows slip away into a world of of silence or pain in front of her very eyes and no one can tell her why or really what to do..well….just take a moment to let that sink in regardless of your parenting/political/medical stance. I don’t have to agree, I just have to have empathy.

Here is what we do know.  There is a genetic component to Autism and it is likely paired with an environmental trigger.  Just like Type 2 Diabetes. You can’t develop this unless you have the genes.  You make it far less likely to get it if you get your butt up off the couch, exercise regularly and do not eat like a regular American.

We just are not 100% certain what that common genetic component or the environmental one in Autism.  I am not going to even pretend to know anything about genetics. The best I can do is tell you:

  1. Picture a city with 20,000 streets.
  2. Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them.
  3. Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people.
  4. (But what about the naval orange buying people!? Those are a lot like mandarins!)

That is what it is like trying to figure out the common genetic factor and environmental trigger together. When I had a discussion about this with a pediatrician 12 years ago she said to me: “Autism is caused by a genetics. Period.  To consider anything else is ridiculous.”

I sat for a moment and thought about that.  I then I wondered out loud, “Can you tell me another genetic epidemic in history that unfolded like Autism?” Crickets. I’m a pretty moderate parent…however it is no wonder that many parents are suspect of the medical system with that kind of definitive statement when the bottom line is WE DON’T KNOW.

Does it mean my husband and I have Autism? No, not necessarily…but who knows?  If we do carry that genetic material and we combined it….we no more caused the autism than we “caused” their big gorgeous brown eyes or fact that they may need to wear glasses one day. Their eyes could have almost just as easily been blue instead all things considered.   And if environment did play a role and all the Fruity Pebbles I ate during pregnancy kicked those  genes into overdrive as the environmental trigger, there is not a damn thing I can do about that now.

I have never felt the “shame of blame”…and I don’t think any parent should.

We are wired to procreate and continue population.  We can just hope that this kind of information will one day find the link that allows children who suffer in silence or physical or emotional pain to grow to be independent and happy…just like all parents want their kids to do.

Autism Awareness Month. Day 3 2015. C is for Coping

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In the most typical of situations sibling issues exist. For sibs of those with significant impairment, these kids are often the invisible bystanders. Their issues and needs sometimes take backseat to the immediacy and reality of their sibling with Autism needs. We ask them to deal with leaving fun events earlier than they would like, let embarrassing situations roll off their backs and stifle disappointment. The rate of having more than one child with neuro diversity is high. Sometimes, the less impaired child is asked to cope and step up in ways that would challenge even the most typical and mature of children.

Day 2 2016: B is for Behavior

Autism Awareness Month A-Z original 2016
B is for Behavior

Running through Water

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All behavior serves one of 4 functions.  To gain attention, to escape a situation, to gain access to something (usually tangible) or a response to an internal stimuli such as hunger, illness or exhaustion.  Seriously.  Just 4 reasons anyone does anything.  Think about it…you won’t come up with a 5th..I have tried.  Of course, if it were that simple we would all live in harmony.  However, there are some times it gets tricky.  For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify.  So if a child with autism likes to clap his hands near his ears is it because he likes the sound?  Or is it because he likes how his hands feel when he claps them together?  Or is it because it creates a little wind near his face which he likes?  To make matters even more…

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Day 1. A is for Aides

Autism Awareness Month A-Z 2015
A is for Aides

Running through Water

Day 1

A is for Aides.

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A1 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young…and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

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Sometimes We Smile (or Sometimes We Cry:Part 2)

I smiled 5 times today.

Three times in public and twice in private.

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I smiled within 30 seconds of arrival. My boy was flapping and waving with excitement to each bus. If given the opportunity, he would have run down the line to greet each one. Not the drivers, but the buses themselves as if they were fresh out of the stations of Sodor. Joyous in his innocence believing they each had their own personality. I saw him in a sea of adolescents, heads down, pushing past each other. Like the hustle and bustle of a subway train. Commuters with backpacks instead of briefcases. Shuffling, shuffling. Off to homework or tutors or practice for being the best at something since they were three. The commute to the next thing.  He sees me and gallops with an outstretched hand. I am greeted with a smile.  Always.

I smiled 5 times today. The instinct as a mother renders me helpless against noticing every single first-time. The same first times which beckon camcorders and cameras like the song of the siren and then whose passion slowly dissipates in the way the empty space between toothless grins are replaced by teeth yet too big for the spaces filled in. Our first times never end. Just more space between. My boy said his phone number out loud after years and years of practice. With no fanfare. He was just asked.

I smiled 5 times today. As I held up a wall, socially grinning and making deals with God. Chaperones milling about-clearing dishes, filling glasses- in a last attempt to seem as if they are helping while stealthy snaps from iPhones capture stealthy photos of their angels’ first dance. I am not a chaperone. They believe they are clipping gossamer wings for grounding by hiding in the shadows,  but their swans are molting on their own and would snap at outstretched fingers offering bread if given the opportunity. Mine laughs heartily and offers a thumbs-up when he sees a raised phone in his direction.

I smile and sometimes my child sees it happen and sometimes he does not. It doesn’t matter because he knows my humanness anyway, just like he would if his genetic dice were rolled differently. Today he did not see those drops of glistening joy and pride and I am no less embarrassed, no less ashamed, no less human for it either.  And neither is he. I have won the emotional lottery. And because of that, sometimes I smile.

My child is an enigma leaving us to figure out what HIS autism means, what HIS cognitive deficits mean, what HIS communication disorder means. And there are times none of that matters at all. He traverses along his own path, one others his age were expected to leave behind long ago by both parents and peers. One lined with The Wiggles and goodnight kisses and “marching parades”.  A path without expectation and never dissapating in private .  And because of that, sometimes, I smile.

My child’s joy is palpable and my heart levitates outside of my body watching him experience it. He can display the weight of his world, but then laugh at the same time if presented with the right silly face. I am never sure which emotion is primary for him but my own worldview tells me joy prevails because I could never do that. And because of that, sometimes I smile.

My boy wants to be part of the world. He navigates that weird and still uncharted middle school territory with explicit assistance. And when that help wanes, sometimes another child sees his light from across the room and without fanfare, crosses over, takes his hand and leads him to the dance floor to be part of the world. I am front row witness to the rare kindness and unconditional love we may have all forgotten before we went mad in this world.  All because my boy is just that worthy. And because of that, sometimes I smile.

My boy buoyantly flaps and hoots and repeats my name over and over and over in the space that should be the calm of my home. He also hops and beams and laughs when I walk away from my dishes, my reports, my vacuum when I cannot keep answering him from another room. He hops and throws his arms around my neck and kisses my forehead with a joy that is supposed to shed after our souls are deposited into these vessels given a name and a face. His love is like something from another place. And because of that, sometimes I smile.

These are the words of OUR life. He and I are both doing the parts we think we are supposed to do no matter how imperfectly executed. Because he is my best boy. Because I am only his mom.

And sometimes we smile.

 

 

 

 

 

 

Why I May Have to Abandon the Best Coping Skill I Have Ever Had

I wrote this one year ago today. As all of our social media accounts have thinned the herd so to speak to show posts from people who are more like minded or we have all done so on our own, there are days I still feel the same. But as people reconsider the last year and perhaps have changed perspective, the divide has grown deeper with those who hang on to their belief systems as history and policy begins to unfold. Many of us have been spawned out into political action to protect ourselves and our interests….on “every side” and may have entered territory and conversations we never thought we could have. As I sit here contemplating my words from 365 days ago, there are days I feel the same about shutting everything down but I glad I did not. I spent a good deal of the summer researching , advocating and educating others on the dangers of removing healthcare policy and instituting new policy that would ultimately devastate the lives of the disabled and ultimately devastate the lives of everyone else too. I was able to talk about how Medicaid actually benefits everyone, even the individuals who never need to access it. My tiny social media reach may not ultimately be influential, but when considering the big picture and ensuring all voices are heard, it is hard to know what the ripple effect could be.

Does social media continue to be a huge time suck and anxiety generator in my world? Yes. But the advantage of influence, the scope of message and finding , connecting and forging new relationships took precedence. But let’s face it….we have all been there since adding a blue and white bird or letter F to the screens on our phones and I suppose we at least all have that in common…

Running through Water

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My heart is sitting in a basket on my desk next to my computer.  I stare at it wondering if I should leave it where it is or if I should shove it back in my throat where apparently it now belongs.  I  am faced with a dilemma I have fleetingly looked in the eye before but this time I pause much longer as if memorizing the outline of the face of a loved one I may not see again.

I love Facebook. I am like a Pavlovian dog when I hear that DING! and will switch over from work to see whats going on my feed.  Facebook is the most existentially layered version of the real world I can imagine. Everyone from my closest friends to those folks who have crossed paths with me for a brief yet meaningful time are there.  It’s the place where my elementary school…

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Why I’m OK with Kids BOO-ing Mine This Halloween

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In U.S. suburbia at Halloween, if you are lucky enough, you get “BOO-ed”.

It is much nicer than it sounds.

Getting BOO-ed means opening your front door to find treats placed anonymously on your doorstep. You…I mean, your child… are to return the favor by BOO-ing another neighbor and so on and so forth. When we moved to our neighborhood 12 years ago, A1 and A2 were a toddler and infant respectively. Our development was full of mature trees, which also meant a neighborhood full of empty nesters. By the time the neighborhood turned over, my kids were much older than the new generation running the streets with strollers and trikes. A2 will watch what he calls “the babies” out our front window. The mothers are young and pretty even in their haze of exhaustion playing in the cul-de-sac and chasing down their little runners. I can relate to their frenzied outdoor fun since even with a 12 year-old, I too cannot just let my child out into the streets without supervision. Autism is an uncomfortable reality for the middle schoolers who in the neighborhood who don’t want me around.

But really, those little kids are functioning in their play where A2 is cognitively and they are at the age of humanness where they are accepting of his differences. For them, the differences are not about intellectual impairment, but rather size impairments as they watch A2 attempt to squeeze himself unsuccessfully into their Cozy Coups. Their questions are genuine and kind and they think nothing of him joining in the digging of dirt.

But most days, he will not join them in play. He knows those are the babies. He knows he is not. This often means I am benched from the cul-de-sac-exhausted-mommy-brigade that stokes glimmers of socialization and connection I had with other mothers when I was also young, pretty and still had energy.

Today, as he is every year since our street started filling up with little ones, A2 was BOO-ed. Twice.

Care packages are silently left at our door and I wonder which of our neighbors were sure to include him. Most know he doesn’t eat many solid foods, knows he might not notice something on our doorstep or spend much time with a special gift. I think despite my smiling isolation, I have neighbors who understand that being BOO-ed is about inclusion and is as much for me as it is for A2. And there is never anything spooky about that.

#autism #autismawareness #kindness #goodneighbors #halloween

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive

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The Grim Reaper takes a break to ensure his safety while the ill-prepared firefighter keeps his distance just in case

(originally posted 10/2015)

Though Halloween parties of my past are now called Harvest Parties at school, the anticipation of Halloween is still timeless. As a parent I find myself still caught up in  creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Harry Potters who could just very likely just be the same child over and over again capitalizing on those homes with full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal was for all our children to be included, be safe and have fun. I was perplexed when one parent refused to change the cookie decorating idea she had. “Kids who can’t make or eat them can at least enjoy them for how cute they are”. In what I believed was a teachable moment I reminded her that it still excluded them and also created a potentially dangerous situation. This parent became so incensed that she quit the committee. While I still get as excited about Halloween as the next guy, I was horrified as one of those children was mine. Another parent was willing to not only exclude him, but risk his safety because she was so excited about her adorable cookie project.
Halloween has become the holiday where those children with differences become the most exposed and have the potential to be the most left out. The numbers of children with food allergies and other differences have risen sharply since I was a child. As a parent with kids with food issues and also autism, it took me many years to figure out ways how to adapt the most super-fun holiday so it was still fun. Turns out, there are lots of ways to do this both as parents and as community members.

Here are some of the top ideas for the “BIG 3” to make Halloween still the coolest holiday ever
1. FOOD ALLERGIES:

a. PARENTS: Sort out the candy together so you can help teach him what is ok to eat. Have the “SWITCH WITCH” visit later that night and exchange that bag of candy full of offending allergens with a present. Your child will be thrilled to have the best of both worlds. And hey, there is no rule that says the switch witch can’t give you that bag to stash away and secretly eat after the kids are asleep.
b. SUPPORTERS:  If you paint a pumpkin teal and have it on your front porch it will alert parents of kids with food allergies that you have an allergen alternative available. If you are planning a class party, ASK about allergens—be sure to ask about brand specifics and preparation—that can all play a role in safety. Please remember what it would be like to be 8 years old where everyone gets to eat really cool looking cupcakes except for you. If that were easy to do, none of us would ever be on a diet. The willpower of a child with a food allergy is like nothing most of us can ever understand.

2. SENSORY DIFFERENCES:

a. PARENTS: Respect your child’s sensory difference. If noise is an issue, avoid those homes that go all out for Halloween. Your child might be in for a “jump scare” that will end his evening of fun. Costumes are not always made out of the finest of materials. Have him choose his own and try a number of options until one feels right. Contact your local support groups for special needs—there may be sensitive Trunk or Treat nights available which may suit your child much better.
b. SUPPORTERS: Teachers and room parents—if you have children with special needs in your class, tone down the scary a bit. Spooky music should not be on full blast and the mulling around of 25 kids in costume might be disorienting. Have a quiet space outside of the classroom where the child knows he can go to escape if overwhelmed. And for Pete’s sake NO BALLOON POPPING ACTIVITIES OR STROBE LIGHTS!

3. AUTISM:

a. PARENTS: Create visuals to help your child understand what to expect at school parties or trick or treat. Try on the costume ahead of time. If your child does not want to participate in Halloween festivities, don’t force them. Throw a small party at your house with old school fun and invite 2 or 3 children he knows for trick or treating. Stick to familiar neighbors homes and buddy up with a child who can model. Sometimes “just a hat” IS a costume with enough thinking on the fly.

Freddie Krueger
Freddy Krueger as a child…before all the drama. He just wanted to feed everyone cereal and soup.

b. SUPPORTERS: If a child does not say “trick or treat” or “ thank-you” he may not be being rude. He may not be able to speak or fully understand what is expected of him. Same goes for a child who appears too large or too old for trick or treating. If a child grabs a handful of candy or doesn’t seem to know what to do when you hold the bowl out, give them a prompt of what to do or physically help them. Their fine motor skills may be impaired and the ability to just pick one or two candies from a dish might be difficult. Still compliment an aspect of their costume even if it seems incomplete. This is still their Halloween too!

 Those of us who try to make our kids feel included no matter what can get very good at scooping up the world around, tying it in a different bow and re-presenting it to our kids and Halloween is no different.  With the help of our community, little tweaks can make all the difference between Halloween being fun or being truly scary.

When is School Choice Not Really a Choice?

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Originally posted 1/18/2017.

While it is understandable why a parent like myself with a child with significant disabilities within a public education and governmental system would feel overwhelmed by all of the details, the truth is I felt that way about political systems before I even had children. I am very Gestalt and particularly nervous when it comes to leaving out a detail.  The Whole Is A Sum Of Its Parts is most assuredly how I have always seen the world.  If I miss a piece, I promise I won’t understand the big picture.  Often the bigger problem is knowing whether I have missed a piece, so I comb and comb for those pieces until I end in a pile of crumbs.  And then?  Well…..once I sweep up…watch out.

Our collective current public educational system is fraught with problems that overwhelm me to even consider how they can be overcome in a fair and meaningful way.

And to be clear, this does not mean our educators are at the top of the problem list.  I would challenge anyone who believes this is the case to go spend one year as an educator in even a high performing suburban school district.  The financial, legal, logistical and social  constraints that exist would send a person without the passion to make a difference in the the lives of kids running to do almost anything else.  The issues that exist in public education are systemic in nature. They are systemic but not static so I have believed it possible to slowly turn the ship around.  Fully funding IDEA would be a great start…but that is the thing about getting overwhelmed by details. Out of survival, you hone in on what will have the most impact on your own world to create your own big picture.

It would be easy to turn this into a 5000 word article and focus on all the talking points about why public education is failing everyone and also on all the fundamentally terrific things public education is doing right.  But focusing on those things is the parlor trick we all seem to be falling for these days. The guy with the horns and the trident is awfully entertaining with his sleight of hand while we’re busy, a well heeled woman sitting before the Senate is making plans to create a systemic and fundamentally flawed plan to oppress and contain the most vulnerable children.

There is no time to yell about unions or standardized testing or who we are not listening to when we don’t have an adequate solution and you don’t have the details to understand why they are there in the first place. It’s like slapping yourself in the face.

Yesterday at the Senate hearing for confirmation of Secretary of Education, opponents of Betsy DeVos were alarmed at just how unqualified she appears to be for this position as evident by her lack of knowledge of crucial educational and fiscal details and seeming inability to directly answer questions.  Mrs. DeVos struggled in the brief periods of questioning to give details about how she will ensure/protect/educate. I am not so certain that having someone who understands every detail of public education is actually necessary or even preferable.

However, I do not believe that Betsy DeVos was one bit “confused” about the Individuals with Disabilities Education Act being federal law and not something that the states decide. I do not believe that she doesn’t understand the difference between proficiency and progress.  I do not believe that she was having trouble answering questions but rather she answered those questions loud and clear.

  • Should all schools, public, private and charter have EQUAL accountability standards when accepting taxpayer funding?
  • Do you think that all schools receiving federal dollars should have to adhere to the Individuals with Disabilities Education Act?
  • Should schools receiving government funding have to have the same reporting systems for bullying and harassment?
  • Will you enforce the law for disabled children should the charters go into place and they might be accepted at the charter?
  • Will you defund or privatize public school?

Instead, Mrs. DeVos let those members of the Senate know how happy she would be to make these discussion points in the future.

No…. I don’t think  Betsy DeVos was confused.  I think she doesn’t care, because in her world the devil is in THOSE details and it appears sometimes the devil comes in the form of anyone different or disadvantaged.

Her plan it seems is to create selective schools that she won’t state whether they will adhere to the federal civil rights protection for disabled students or potentially even for just their protection at all.  Over time, disabled students and socially/economically disadvantaged students, students with  behavioral issues are going to once again be segregated due to selective admissions processes, “waiting lists” differences in educational accountability and financial discrepancies between those who can afford the gap in tuition not covered by a voucher.  There will be no such thing as inclusion in schools it will vanish with the details.

For me, this isn’t a matter of lack of understanding or even sour grapes.  I live in a state where there is a “scholarship” program available for students identified with a disability which we used for A2 through pre-k and kindergarten. Given his Autism diagnosis, he qualified for (at the time) a $20,000 voucher through the state board of education to use with a scholarship provider.  Our district was still responsible for writing his IEP so we would meet annually to update.  We found an excellent match for him at a local private, not-for-profit Autism school and in just three months I was pleased to show our district the tight data tracking his improvements.

Short of realizing he wasn’t getting everything he needed in public school, overall, we had a positive experience using this system because the stars were aligned.  A kid happened to move away opening a spot in the classroom, otherwise A2 would have been on a waiting list.  Our district did not transport him so I was unable to work much so I could take him the 20 mile round trip jaunts twice a day. Things were very tight for awhile because we were still responsible for $8000 a year out of pocket toward the tuition.

The biggest trade off?  By accepting the scholarship, we relinquished our rights to FAPE (Free and Appropriate Public Education).  In other words our “school choices” were:

  1.  Stay put and spend thousands on attorneys to try to prove he was not getting an appropriate education (as evidenced by the amount of progress he made with a specialized ABA program)–but in the meantime, if we filed due process based on the law, he would have had to “stay put” until a resolution.  Which could be years.
  2. Find another school that could accept him, provide our own transportation, find $24,000 for three years of out of pocket expenses AND hope he gets what he needs because the private school technically does not have to follow the IEP.  Nor technically are there any repercussions for not meeting his needs.

Choice?  Like the Sophie’s Choice of the outcome of my child’s future.  They both sucked.  We only had a brief period of time to harness the little spongy brain of his.  We were very, very lucky it worked out the way it did.  But we were also very, very lucky because we are upper middle class white, intact suburban family with one paycheck that covered everything and a kiddo who did not present with behaviors too difficult to handle.  We were very, very lucky because the school was pretty great at what they did with a caring team to boot.  I am not against the idea of a voucher system and school choice, but in order for it truly to be choice, the playing field must be appropriately leveled. Otherwise, it is only really a choice for some.

Betsy DeVos wants to turn this ship around, but there is a huge iceberg in the way and only enough lifeboats for the privileged and the able-bodied leaving everyone else, including my beautiful boy to go down with the ship.  Our educational system needs fixing, no doubt…but first do no harm.