The Raven Lunatic

Still trying to figure it all out

Bernadine Spitzsnogel

Bernadine Spitzsnogel
Birthday
December 01
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All material on "The Raven Lunatic" blog is copyrighted by the author. Author of "The Luxury of Daydreams"--available on amazon and all major book sites.

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Salon.com
Editor’s Pick
APRIL 5, 2012 10:14AM

Putting autism in its rightful place

Rate: 40 Flag

A testament for early intervention.

Today is our son’s birthday. He’s a fine young man and we are really proud of him.  In a month he will graduate from college. We are optimistic that the path he chooses will be a good one, and that he will make a positive difference in our struggling world.

He already has.

Today I’m not thinking about that day more than twenty years ago when he was born, two full weeks after the doctor’s predicted due date.

No, today I’m thinking about what happened exactly twenty years ago today. In retrospect, that is a quite significant day in his life.

Why was that particular day so important? After noticing developmental delays in our son, his extreme contrast with his three male cousins about the same age, that day we went into our local Easter Seals for the first time.

Our son regressed in development at eighteen months. One minute my brother was taping our son in a high chair in their Iowa kitchen, and the baby said, “Hello, Uncle Andy.”  Within weeks, there was no language at all. No mama, dada, nothing, only a videotaped reminder that he did speak in a full sentence, one time.

Were we imagining things? He had a wry neck (torticollis) and needed physical therapy to hold up that melon-sized head. We weren’t too worried.  My husband's family is known for their large heads, and in that family is filled with very smart people with large heads. 

But things weren’t right. We made an appointment with our family doctor who recommended that we take our son to the local Easter Seals rehabilitation program for evaluation.

On this day, twenty years ago, we loaded up a screaming toddler, my mother-in-law, and my husband and I walked in to the center to see a group of specialists, including a world-famous neurologist from St. Louis Children’s Hospital who hosted clinics in our town.

After reviewing all the pre-testing, the expert told us that he thought our two-year-old had autism. Our son didn’t help the situation by screaming bloody murder throughout the exam and report.

What we couldn’t know then was that the child was just really ticked off.  He couldn’t express himself or understand language, what is technically known as expressive and receptive aphasia. Stroke patients often get this.

We heard the “A” word for the first time.

Autism.  Just writing it down now scares me. Twenty years ago there was no autismspeaks; it just wasn’t that common yet. Now the statistics are terrifying.  Are we better are identifying those at risk, or are there more children who have this confusing syndrome?

Our son immediately started attending physical, occupational and speech therapy.  At three he entered a state-funded program for therapeutic pre-school.  He was in special education classes until second grade and was then mainstreamed into a classroom of typically developing students. He continued with speech therapy until fourth grade.

He did not have full-blown classical autism.  At best, he has some traits of Asperger’s Syndrome. He also has Tourette's Syndrome and something called Benign Essential Tremor.

But the investment of time in therapy hours and at home exercises paid huge dividends in the long run.

By the fifth grade he was – by all accounts – a typically developing child with the same issues and challenges of any eleven-year-old. That year he won both the school spelling bee and geography bee. His academic prowess and intellectual curiosity kicked in, just like the other big-headed boys in the family. 

Writing these words it sometimes seems like a dream. When we got that uncertain diagnosis, we were devastated.  We didn’t know if he would improve or stay the same. He did not talk until right before age four. He was potty-trained late. We were afraid for his future.

Return twenty-two years and then fast forward two days.  We’re taking him home from the hospital in a little sweat suit with the name of our university on it.  When he was born, we immediately started talking about college for him.  We shared the dream that he would go to a better school than we did.  I’m not demeaning our college; it was a wonderful place for us and we’re grateful. But we wanted our son to have more.

When he was diagnosed with PDD-NOS (Pervasive Development Disorder, Not Otherwise Specified) we did not know what the outcome would be. When he was two, we didn't know if he would ever live on his own or even go to typical school.

Yet, because of the caring, loving hands of his therapists and teachers he progressed greatly. We were the lucky ones. Many of his classmates in pre-school had feeding tubes or no language or other life-threatening or life-stealing permanent issues to deal with, and only tiny increments of improvement. There were many children whose parents had abandoned them, and they were part of foster families. Or some children for whom the only decent care they received during the day was at therapy. And some who not only had a disability but abject poverty at home.

Our horizons were broadened and we learned just how lucky our son is.

Today our son is a typical Millennial.

 Neither he nor we forget how he got there. 

If you know someone who has a child with any symptoms of an autism-spectrum disorder, get them tested. Most parents know if something is not right with a child, but are simply to afraid to confront the truth. 

Early intervention can unlock potential  you didn’t realize was there.

If you know of a parent who is too frightened about what issues a child may confront, feel free to share this with them.  Encourage them to contact their local Easter Seal society or appropriate agency or medical professional.   

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Comments

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A wonderful story of hope and love and believing things can get better. The best to your son as he moves through this millennium.
How many autistic kids go undiagnosed and left to struggle on their own? "He's just a bone head... She's just spoiled!" Hmmm...
Congratulations on a brilliant and well-deserved EP.
Happy Birthday, big-headed young Spitznogel!!

Curious, really. I have to ask. Do you think it was his big head or your reluctance to push him out into the world that accounted for the extra two weeks in utero?

In either case, thank you Mother and Father Spitznogel for making a wonderful new person!
I'm so glad you caught it and hope this piece has a wide audience. What a proud day for your son and his parents that graduation will be.
@greenheron. I'm going with the Spitzsnogel stubborness, though pushing that big head out was a challenge. I did not enjoy sitting for the hospital's version of a steak dinner that next night.
Thanks for such an inspiring read. Good luck to all of you.
Congratulation on all counts. Wonderful posting.
You left a word out, Bamy, in this sentence: "Yet, because of the caring, loving hands of his therapists and teachers he progressed greatly."

I know why you left it out, so I will put it where it belongs. Here's the sentence the way it should read: Yet, because of the caring, loving hands of his parents, therapists and teachers he progressed greatly.

My congratulations to all, especially the graduate!
Bernadine ,good and healthy and haρρy birthday to your son’s birthday.I think that your story is the ρroof on what love can do..Your love between you and your husband..your and your husbands love towards your son.Love...can make only good...even in health..An excellent story of hoρe and love here..The best to you and your family,Bernadine .Rated with admiration.Best regards.
You know how much this hits home with me. You are one of the lucky ones. /r
great parents and a great son=a very hopeful outcome
I am with Matt.
Congratulations on this good outcome.
Rated
I know of a boy (not a relative, but a relative of a close friend) who is autistic. His parents are rather backward, to put it nicely, and refuse to believe anything is wrong with him. It is heartbreaking to see him and realize how much could be done for him to improve his development and overall well-being. People call him "stupid" and other names. Heartbreaking.
This is wonderful and a vital message that needs HUGE coverage. I hope you sent it to the national Easter Seal organization. If you are too shy, let me know. ;-)
I'm so glad my sister called my attention to your story--it deserves widespread recognition. I once worked at a center for "behavior disordered" children. Although I didn't work directly with any diagnosed as autistic, we did have one student whose mother worked with us at the center...so I am familiar with the extreme patience and faith required along with the worries...thanks so much for finding the words to describe your journey.
I hope he had a great birthday -- I know he has great parents and a great support system, and those are gifts he can't return for cash! Facing the issues you faced, I like to think I would have been as proactive...but the urge to think nothing's wrong must be strong...I'm sure there are lots of parents who will find inspiration in your story. Whether the eventual outcome is as happy as yours or not, we all know there's no long-term benefit of denial.
Thanks for sharing this inspiring story. And congratulations on a well-deserved EP.
in your usual straightforward, pragmatic way, this tells what is actually an incredible story. your son is lucky you were his parents. as you say toward the end, there are kids who don't get diagnosed or helped until more time than should be has passed, sometimes with terrible results. i know all too well (a grandson) what happens when one or more parents is in denial about their child. great post, a/b.
Bernadine,

This is so well written and makes it clear that loving family can make an enormous impact on a child with differing abilities.

Things are different now in terms of therapy and interventions. The family members, particularly the parents or caregivers, are a crucial part of the multi-disciplinary team for the child. The other team members--the ESPED teachers, (early childhood special education teachers), therapists and other specialists--all count on the parents.

That's because the parents are a child's first teachers. For your son, you were also his best teachers.

I hope you all enjoy your son's birthday celebration together.
Congratulations to you all!
What a wonderful story, and I can't help but also think if we let these programs die, due to cost cutting that some are choosing to do, how adversely effected everyone in this picture would be.
Choosing to sponsor programs with our tax money and contribute to the greater good brings everyone to a higher level, I fail to understand why this is a difficult concept.
But on a personal level what an achievement Bea, and a tribute to you, your husband and the medical community that supported your son.
Great story. I forwarded to a girlfriend who shares a lot of your story.
You are a marvel. Thank You!
Good for you! Glad you got early intervention and also that you are sharing your story. It is important for those who are not aware.
What an excellent post, Bea! I have a great nephew who I have believed is somewhere on the spectrum since he was around two. His father is one of the parents you described who was too frightened to hear the truth. The boy is a fine student, but is socially awkward and fearful. My heart breaks for him while his father says "he's just a little strange."

Lezlie
A great and important message!
My grandson is autistic. I knew he was special before he was born and thanks to support from speech pathologists, experts in fields of learning disabilities and communications, teachers and counselors, parents and advocacy groups, he continues to show us the importance of acceptance and tolerance and patience.
This is so wonderful! More and more children are diagnosed somewhere in the Autistic spectrum each year. I'm glad you found resources 20 years ago and had a knowledgeable Dr. to lead you in the right direction. I'm so happy for your son.
This was so, so inspiring. Thank you for sharing your knowledge and a very happy birthday to your son!
Fantastic! Your perseverence, dedication and choice of treatments did it.
I second what Matt said. You left out the word "parents."

I know how proud you are of him, and you should be. Good luck and congratulations to him.
Your son picked great parents. How incredibly lucky that he chose you.
This strikes me as an oxymoron. "He was diagnosed with PDD-NOS (Pervasive Development Disorder, Not Otherwise Specified)"

PDD-NOS even says in its name (not otherwise specified) that no one has a clue what the hell it is. So, its more a failure to diagnose the problem, while acknowledging that there is a problem.
Congratulations! I must share this story!
I agree with Matt. You deserve the bulk of the praise. I'm the mother of a child with Asperger's . I know. Blessings to you for raising awareness about autism too.
Sounds like your kid has Asberger's, not Autism. Still, raising a so-called healthy, normal kid is hard enough. I'm sure the challenges of any sort of Autism-like syndrome made it that much harder.

Autism is simply the name we have given the adaptations that don't lead to advantage for the organism we call human. It's not a disease. It's a condition of transitional evolution.

Still, for a parent, it's a tough condition. Glad you got all the help you needed to make it easier on you and your son.
Your point here is so well taken. I shall past this on to some friends who recently think there child is the same.
........(¯`v´¯) (¯`v´¯)
☼•*¨`*•.¸.(ˆ◡ˆ).¸.•*
............... *•.¸.•* ♥⋆★•❥ Thanx(ツ) & ♥ L☼√Ξ ☼ ♥
⋆───★•❥ ☼ .¸¸.•*`*•.♥ (ˆ◡ˆ) ♥⋯ ❤ ⋯ ★(ˆ◡ˆ) ♥⋯ ❤ ⋯ ★
Congrats to your son and brava to you, Bernadine.
Ah, Bea. You are a beautiful mom, and a wonderful writer. You are all pretty inspiring... xo ~r
Great article!

My sweet friend is struggling now with an older child with full blown autism. He's a handful, and I worry about her, mentally, physically, and emotionally.
Thank you so much for sharing your story and congratulations on the well deserved EP. This past year my grandson was born and then, within 2 hours, we were told he had Down's Syndrome. No matter howmuch you try to prepare yourself in your mind for these disabilities, it remains a shock. I am a huge fan of EI (early intervention). My daughter is lucky that she could remain home to care for her young children. A sad awareness has developed that not all states have the same resources as our state or, apparently your state, so volunteerism has to pick up the slack.
Again thanks for this and I'm off to train for the Down's Syndrom Buddy Walk in October.