HELP EMMA'S DREAM'S COME TRUE
Emma looks completely “typical” and often acts typical as well ( yeah, whatever THAT means). It is difficult for many to understand and see why she is even on the autism spectrum. Until recently, It was hard for me to explain. I would begin to explain a situation we face, and another parent would enviably say,” But my kid does that too!” And I would be left feeling like I hadn’t gotten my point across, and many a person I just know are out there thinking I am a loon, and there is nothing going on for Emma.
Oh how I wish that were true. I’ve actually prayed that prayer: Lord, just let me be wrong, be a paranoid parent, a Helicopter Mom as they are called. Why? Because that’s an easy fix: I just mea-copa and admit my wrong doing, change, and we’re done. Sweet!
But it doesn’t work that way, because autism is real, and it affects now 1 in every 100 children in our country, and a staggering one in every 58 boys. Holy cow! When are we going to wake up and listen? Well, that won’t happen until we can SEE Autism. Here are some things that might help you to see, in case you need a hand:
Autism is a spectrum disorder. This means it can be severe or mild, or anywhere in between. On the mild end, a child /adult might appear in public quite typical, unless you can see the supports put in place to enable him/her to be so typical for the hour (s) you see them. For Emma this is a barrage of supports: from extensive dietary support, to environmental supports, medical supports, orthopedic supports, to sensory supports to behavioral supports to sleep supports. It’s all there. If we slack on one aspect, her functioning goes south.
Autism is a MEDICAL condition. Yes, really. Our children as sick, physically sick. They suffer from extensive gastrointestinal, neurological, immune and allergic and seizure related conditions, just to name a few. These conditions affect their ability to feel the world the way other do. Process food the way we do, live the way we do. They often need to protect themselves from things that don’t bother others: sounds, sights, smells. They are often constantly in a state of flight or fight.
Autism is a relational disorder. It affects these children’s ability to relate to other people in a typical way. Could you have a nice calm conversation with someone in a dark alley just after a mugging attempt on you? Could you focus enough to learn some “bizarre” facts or behaviors someone else seems to think you need, but in your mind might lead to you being mugged again? I doubt it. Many of our children live in this constant state, and the things we ask of them not only don’t make sense to them, they feel downright dangerous.
Often times many of the behavioral aspects of autism are related to rigidity and control. Because of the way their bodiesand minds have been affected by this illness, most children on the spectrum are rigid and controlling. It’s not just like your two year old who says “NO!” and refuses to do something. It’s like that on steroids, about almost everything. And conventional methods don’t break through the rigidity. It’s not about who can hold out longest, as is with most kids. Holding out longer only creates a larger barrier to connection with others, THE hallmark deficit in autism. Holding out, in the traditional sense, makes overall functioning for these kids harder. It’s a relational disorder, remember?
Autism is relentless. Families dealing with Autism are often sleep deprived. I know we are. Children and adults on the spectrum don’t generally sleep all that well. Parents of children on the spectrum are constantly on high or even hyper alert: Their children wander away, they get into things, they require constant supervision, and they hurt themselves. They projectile vomit and spew diarrhea across multiple rooms in the house. Or they don’t stool for days and become impacted (that’s when stool has to be medically removed from the intestine). It’s not pretty. There are no holidays, there are no weekends, and there are no days off. Even with respite care or programming, we’re constantly “on duty”.
Autism is financially uh, “challenging”. I almost laughed a few years ago when my husband, practically in tears, looks up from his hands and says,” I SHOULD be able to provide for you and Emma.” He’s a gardener for goodness sake! There are families where the parents are doctors and lawyers and successful stockbrokers or business people, and guess, what? Many of them are broke too. We’ve spent more healing Emma than an Ivy League education would cost us…without financial aid. There are so many services and effective medical treatments out there that are not covered by ANY funding source. Especially not private insurance. On the contrary to popular belief, we don’t just run out willy-nilly and buy the latest snake oil being sold. Our days and nights are filled with research, doctors, networking, and more research, to figure out where to put each precious, hard earned dollar and how to make it stretch. There are treatments I know would help Emma that I have waited on, for YEARS, till I knew more, had more resources, felt they were more appropriate, and that they were the best use of our resources. There are many waiting in the wings now. I won’t try them all; just the ones I think have to greatest chance of success.
You can recover a Child/ Adult with Autism! I want to shout this one from the rooftops! No, you didn’t miss read this. IT’S TRUE. You can recover from Autism. Not everyone does. We don’t know why that is yet, but neither do we know why some people recover from Cancer, and others do not. The important thing is to TRY. Typical western medicine has no answers for us: they believe autism is not curable, or even recoverable, and therefore give us no hope, few treatments other than psychotropic drugs that make those very real underlying medical conditions worse. But parents of kids on the spectrum have found the hope. We have searched it out relentlessly, and the proof is in the pudding. There is a growing number, thousands strong now, of families that can say they are done with autism. It’s a thing of the past for them. These children are now young adults, and ironically many of them are in college, captains of their sports teams, brilliant actors or actresses, or singers. They are active in their schools and communities. They have jobs and earn money. Yes really, and no I am not kidding. It’s because their parents refused to give up, refused to lose hope and fought a system hell bent on keeping our kids down. But they couldn’t.
I’ll say it again: Autism is expensive: Even if full recovery isn’t achieved, every part of this condition we make better, the less dependent on others our children will be. Translation: the less money YOU will have to pay to care for adults with autism. And pay you will. There is a large “cohort” of teenagers with autism coming into early adulthood soon. Most of them will need fulltime care for the duration of their lives. We have virtually no programs in place to meet this demand. One person was heard saying it’s a freight train barreling head on into our social service system. I’m thinking Tsunami myself. Maybe when that Tsunami hits we’ll begin to see.
I was speaking with someone today who mentioned another child with a more accepted medical condition in need of a medical device to help them. The family was looking into people/ foundations that could help them. The child had tried this therapy, had improved, and then had worsened when the therapy was not available. Sounds familiar. This child got sores on their legs and arms, and their eyes started bleeding or some such. Yikes. All hands on deck, this kid needs help! Yes, she/he does.
And so does my daughter. She doesn’t have blood coming out of her eyes, but she needs your help. Will you see her, and the millions of children like her, who need your support, understanding love, prayers and most of all your ability to think outside the box, and HELP, and believe? We can find out what’s behind this epidemic (those of us, both doctors and parents here in the trenches actually have a pretty good idea) that is stealing our future, but we have to be willing to look. At ourselves, public policy, “healthcare” as we know it in this country, Parental Rights, and our basic freedoms to choose. Please open your eyes and really see autism. Find a parent fighting for their child or loved one, and you find a portal in. A place, if you stop and take some time, that can help you SEE autism.
Ellen is a counselor, educator and Biomedical and Son-Rise mom extraordinaire. She has many years of experience in public, private, "typical " and special needs educational settings, as well as extensive training as an Option Process® Mentor Counselor through The Option Institute in Sheffield, Massachusetts, sister organization of the Autism Treatment Center of America
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