one house on the block

To those of you who read Diary without a further connection to autism, I am grateful. I beg you though, please, please always remember as you read …

Our autism is just one house on the block, not remotely representative of its neighbors.

Our friends need help.

And by God they need it now.

~ From Autism Street

– Diary, August 2011

~

We need you to help us address the dramatically disparate levels of support for people with autism around the country—from state to state, zip code to zip code and school to school. We need you to help us create a system in which a child’s services no longer hinge on their parent’s ability to advocate effectively for them. That is simply not what this country is— or should be —about.

~ From Dear Mr President

– Diary, May 2012

~

We talked about community service and how much more of their funding it needed. I told her that while we all know that Autism Speaks was founded as a research organization, there’s no denying that their rapid growth and enviable visibility have led them to now garner and control the lion’s share of autism donations (in some cases diverting money that in the past would have gone to local service organizations) and that there is therefore a responsibility to the community to funnel more of it back to providing direct services to those on the spectrum.

We talked about the desperate need for our President to acknowledge our community and to use his podium to help advance what is undoubtedly the next wave of the civil rights movement. We talked about the need for uniformity of services across zip codes, the need for a federal insurance mandate, the fact that no one’s going near anything with the word mandate in it.

~ From Inflection Point, my conversation with Liz Feld, President of Autism Speaks

– Diary, July 2012

~

He’s listened to me talk about the dramatically uneven levels of support around the country – from state to state, zip code to zip code and school to school. He’s listened to me talk about how much a child’s services hinge on their parent’s ability to advocate effectively for them and how – in this, the greatest country on earth – that is so desperately wrong.

~ From What Do You Want Him To Know? my conversations with Mike Strautmanis, Advisor to President Obama

– Diary, May 2012

~

And the differences in the care these kids are getting? It’s almost surreal. Reading the [Autism Speaks] wall or any of the other national forums, one immediately sees the dramatically different levels of service from state to state, zip code to zip code, doctor to doctor, school to school, classroom to classroom. From one parent to another they try to figure out what they must be doing ‘wrong’ because they can’t seem to get their kid the same kind of help that someone else is getting.

Autism doesn’t come with a handbook. Doctors issue a diagnosis – Congratulations! You’ve just won a life-long neurological disorder!, then send parents to their local schools and say, ‘Have at it.’ School districts scramble. Money is scarce. They hobble together plans. Parents with time, money, and resources who happen to live in the ‘right’ places are able to get what their kids need. Even then, it becomes a nearly full-time job – creating, negotiating, monitoring.

But far, far more often we find the most vulnerable children in schools being babysat, guarded, managed and warehoused rather than taught because no one in their world has a clue where to begin.

It’s happening EVERYWHERE.

Children who could so easily have a fighting chance at independence are watching time evaporate as politicians posture and pose and schools throw them into classrooms they can’t possibly handle with untrained aides who have no idea how to support them.

~ From Too Much, A Long Meandering Rant

– Diary Feb 2011

~

Because I believe down to the depths of my soul that it’s true – that autism comes in so many and such widely varied manifestations as to make their shared title a ludicrous farce. For God’s sake I say it so often I could type it in my sleep.

But nonetheless, I had this moment. This awful, ugly, human moment where I wanted to stand up and shout, ‘Stop! That’s not OUR autism! That’s not what WE live. That’s not my girl!’

And I hated it. But so too I was grateful for it. Because in it I saw the mothers and fathers and the autistic adults and their siblings who read about my girl – my girl who talks – by God she TALKS! – and who reads and who is identifying emotion and practicing self-calming and connecting and Jesus, making a friend, and I see them shaking an angry fist and saying, ‘Stop! That’s not OUR autism! That’s not what WE live. That’s not my child!’

And I felt it. I viscerally, painfully, intensely felt it. What it must be for the parent whose child has no words, who feels as though they live under siege – desperate to keep their autistic child and his siblings safe, cleaning feces from the walls again and again, awake around the clock, saying, how DARE you? How DARE you present your shiny, happy story to the world and say, ‘This is autism’? Cause that sure as hell ain’t OUR autism.

And in that awful, ugly, human moment I got it. And I wanted to apologize to half the world and curse the other half and then throw up my hands and walk away in defeat – because HOW? How the hell do we do this? How do we explain that they’re ALL autism? Cause ludicrous farce or not it’s the only word we’ve got.

~ From Our Autism

– Diary, April 2011

~

Hi Jess. So many of us are not as lucky as you are to have a large school team of people who “get it.” I think it’s more than likely we outnumber you. Would you please consider outing us and putting light on our struggles? You are how it should be, could be, can be.

I’m not good with metaphors or analogies, but I often think of the differences between our school experiences as you being in the light of day while many of us are trapped in the mines, chipping at the seams, trying to find our way out of the darkness.

We need air. Will you pipe it down to us, by acknowledging us? We are here. We need help. We are here.

~ An e-mail from a reader, yesterday.

~

I stared at her words trying to figure out how – how to acknowledge the vast differences in the way that each of us as parents or autistic individuals experience autism and the support we get – or don’t get – from our doctors, our communities, our employers, our schools. As I struggled to put the words together, I realized that I’d already written them.

But time has passed and stories have accumulated since then. And I’ve gotten complacent. I’ve forgotten that new readers join us and start where they start, joining our journey wherever we happen to be.

I haven’t said it in a while.

And it has to be said.

Again and again, it has to be said.

Autism is one word, but there is no one autism.

And there sure as hell is no one remotely consistent model of support.

It’s what keeps me up at night.

It’s what keeps me fighting for airtime with the people who might possibly help.

It’s why we all have to keep talking.

Thank you, S, for the reminder.

~

I typed something I thought might be poetic.

And then I deleted it all – one letter at a time.

It was a story about a house on Autism Street – I thought a pretty little metaphor might make it easier to say.

It didn’t.

The truth does not always fit into pretty metaphors.

My Brooke’s autism – our family’s autism – is a fact of our lives. It challenges each and every one of us – none more than my baby girl.

We walk a high wire, arms out, heads up. We search for our footing; we fight for our balance. We scan the crowd. We seek compassion. We sniff out pockets of understanding.

We hound the experts; we beg, borrow and steal the tools for our girl to live the fullest life she possibly can. We pray for acceptance. We try our damndest to celebrate what we have the luxury of calling her differences.

It isn’t easy. Not by a long shot.

But our neighbors on Autism Street live vastly different lives.

They live in houses where autism is about survival. Where there are no words. Where connection, engagement, a momentary, fleeting interaction is everything.

Where constant vigilance takes its toll. Where sleep is a precious memory. Where children growing up and growing stronger is terrifying.

Where tempests brew without warning and siblings are versed in self-defense. Where psychotropic drugs are a necessary evil. Where cabinets and pantries are secured behind lock and key. Where seizures are constant. Where skills once mastered vanish with the wind. Where potty training happens – again and again and again.

Where children vanish in the blink of an eye – wandering into the world armed with superhuman coordination, uninhibited by any sense of danger.

When we host a block party here on Autism Street, we’re reminded that our high wire act is really awfully quaint.

*

We need compassion, understanding and the tools to teach our girl to fly.

Our neighbors need HELP.

The need it NOW.

They need answers.

They need services for these kids – for themselves. They need a place to turn. They need a strategy – short-term, long-term, the distant future. They need a break.

Too many of them are living under siege.

*

To those of you who read Diary without a further connection to autism, I am grateful. I beg you though, please, please always remember as you read …

Our autism is just one house on the block, not remotely representative of its neighbors.

Our friends need help.

And by God they need it now.

~ From Autism Street

– Diary, August 2011

(and Diary, November, 2012)

17 thoughts on “one house on the block

  1. We live in a district where our Director of Education stated, “ABA is a cult.” Yes, this woman who oversees the education of all the children in our district stated OPENLY that “ABA is a cult.” Well, if it is, sign me up because it is the only thing that has made us able to survive day to day.

  2. jess,
    this post really hit home.why?because here,in bombay,finding a therapist who’s willing to listen and work WITH you,is so tough.With no regulatory systems in place, ive seen my share of questionable people. People who think that our kids are just nothing,who forget they have feelings. After being on this journey for 4 years i have finally managed to find 2 who can see my childs potential and are willing to teach him and not just make him do things.His present school believes in intimidating him, in creating a horrible sense of fear in him to get him to do stuff.unfortunately because of limited options we’re forced to stick it out. Thanks to parents like you i am more vocal about not putting up with crap and helping my son find his “voice”.

  3. Our school district, bless their heart, doesn’t know what they don’t know, They tried, they really did, but they had so much training and educating of the teachers and administrators needing to be done that anything they did to help our kids was pointless. They seemed to get the “idea” of autism (aspergers in our case) but if the child has a verbal ability to communicate and a higher than average IQ, they don’t believe that the deficits are real. They see them as imaginary from a child who is just being difficult. And in the public school world this translates to behavior problem. So… we homeschool, because they left us no choice.

  4. This is an amazing post. Thank you for sharing. We need some “standards of care” for our kids. We need a standard medical workup to include EEG, MRI, and gastro workup for any kids who show signs of issues.

    We’ve been on this journey for five years. Our autism has been many autisms throughout this period. When first diagnosed, we had constant sleepless nights, terrifying eloping, and a three year old who would wake up and spend time in his closet. A year later, we had an engaged but extremely hyper boy who was running into walls, walked on a broken leg & got three sets of stitches. A year later, we were fortunate enough to get into an NIH study & discover seizures that I suspected from diagnosis. Treating seizures brought calm, academics, handwriting, and the ability to enjoy a movie in the theater. This past week after experiencing gastro issues since diagnosis, we met a sympathetic gastro & got him scoped. The initial result: he has severe reflux. She asked if he complained after eating (no – he’s moderately verbal with a very high pain threshold). She said it looked really bad & is hopeful the additional tests will reveal some more answers. In the interim, she put him on Prilosec & his sleep is getting longer & better.

    Each of my son’s issues has been diagnosed by a different group. I’m a SAHM, ds is our only child and we’ve got health insurance. I’ve been grateful to be able to continue seeking out answers to help my son. I do wonder often about working parents, with larger families, different or no insurance, and this daily struggle in trying to make sure we are supporting our children the best we can.

    We can do better. As a society, we should want to. I choose to hope we will get there some day. All kids with all autisms deserve it.

  5. Thank you for such an important reminder, Jess. I have two little lovies on this spectrum, but they have wonderful early intervention, they speak, they smile constantly, and hug me often (now, my girl didn’t before). Thank you. I am reminded of my glass being very full.

    But thank you also for being the oxygen. You do pump it down the mine shaft. You pump it down with your words and this community. And by god I know families need more than that; but you can’t do it all. And you do this. And that is a lot.

  6. I am one of the fortunate ones whose daughter attends an amazing school for Autism. But when she is home it is a whole different story. The support we need at home isn’t there. As my daughter grows less an less people are stepping forward to help. I find myself alone struggling with her aggressions and worrying constantly when the next might occur and if this time I’ll be able to manage it. I hurt deep inside because I want to help her but I don’t know how or if I can. It is one of the worse feelings a mother can feel. I know I’m not alone but I still feel alone. Thanks Jess for continuing to fight for us all when you have your own battle to fight.

  7. Thank you Jess for shining the light. After many years, I am of the opinion that here in the U.S., I.D.E.A., though groundbreaking, is an incomplete idea. The CSE system in education must change to include more oversight and accountability. It is a broken system. Schools that gladly sneer at parents saying “if you don’t like it, take us to hearing.” Dismal outcomes ignored by the Feds. If only they could have a way to read the thousands of stories from parents caught in the same quagmire, maybe then change will come. It has to come.

  8. One of your greatest posts ever. I think we need help from lawmakers…perhaps designated minimum spending per ASD child as a percentage of a system’s budget, or federal vouchers. Lack of programming often stems from lack of desire to spend money on SPED kids, when the regular ed parents have the political clout locally. Obviously, we also need funding for some residential schooling for kids who get big and violent at home…or who become adults. When the money is there, the businesses will rise to meet the need. Perhaps Autism Speaks could consider organizing some lobbying by parents…

  9. So very well said. Even in our little family, my three children have three very different brands of autism. Some days it is awe inspiring. Some days it is terrifying. Most days it is exhausting. There is no one autism, but it is one word that serves as a key to this community, and for that I will be forever grateful. The best we can do for each other some days is just to be here to say “me too” or “I get that.” You give that to so many of us. Thank you.

  10. Another great post. I would suggest that you have your “followers” send the names of those school systems that do get it, and that you list them as a sort of honor role of great school(s) systems so that they are recognized by the blog world and perhaps others will want to follow or at least contact a great school system near then to emulate. Just a thought. People like and need to be recognized for their good works…
    Love you,
    Dad

    • Seriously…that’s a REALLY good idea! My son is almost 3 and was diagnosed with autism this year, and we are in a unique situation of being able to move anywhere in the country. Finding the best place for us to settle is a daunting task, and there are a lot of different opinions of which states/cities/communities can offer what is best for kids on the spectrum. I think compiling a list from parents, from those actually down in the trenches, would be immensely helpful for people just stepping onto this road!! There is no reason why we as a community can’t help ourselves, do the best that we can to point each of us in the best possible direction we can find!

  11. This post really hit home for me this week. We were right in the brunt of Sandy’s wrath. I’m wondering how many of our families in the area were not only displaced from their homes, but are now sending their children with complex IEPs and 504’s to completely different school districts until their homes and schools can be made inhabitable again. I am certain there will be many stories to come. I think it’s wonderful to continue to highlight the discrepancy between families like ours, who have exceptional services, and those who have to fight for every single nuance of their kid’s often inadequate educational plans. Thanks for remembering them Jess.

  12. People move to our state for our autism services little knowing that “zip code to zip code” is the way it is. The town next to us wasn’t going to give Bells the services she needed so our daughter had to move to our town where the rents are significantly higher. Rough for a single mom but necessary for our girl.

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