My Autism Story: Kim Has 3 Kids on the Spectrum

Big Kid 6


Family Love
Kim's a mom with three kids on the spectrum. Her "bright boy" is an adult now, but lives at home and attends a day center for the disabled, while her two beloved "garden girlies" are in elementary school. She's been married for 21 years and has lived all over the place, including six years in Germany while her husband, Rick, served in the military.

Kim says one of the hardest things for her was "learning to accept the momentary heartaches" as her kids miss milestones and their peers pass them by. As she continues this journey with her husband and their three very special children, she shares a bit of her world, and valuable insight, with us. 

Here is Kim's story ...

How old were your children when you first suspected they might have autism? What were those initial signs? 

We first learned about autism when the bright boy was four; he was a handful as a baby and his development was always delayed. He needed to be held (and nursed) constantly as a baby and young child. His sisters were very much like him, but without the significant language delays and cognitive impairment. Sleep, eating, noise, light, textures: all were issues for the bright boy that made mostly mine (although, at times, my husband's) days splintered and nights fractured. Because of what we learned with the 12 year head start we had with the bright boy, we were better equipped to handle the garden girlies' issues.

 

In those first moments when you found out your children's diagnosis, how did you react? And how did that reaction change over time?  

The bright boy was diagnosed in the mid-1990's, at a time when the Bettelheim legacy was still felt. His book was the first I read; there wasn't much of an Internet at the time, and there weren't a whole lot of resources, either. There also wasn't the vaccine controversy, so it was very much a time of no real information to go on. We were told he'd need to be institutionalized as an adult as he'd never be able to live on his own. Unfortunately, it looks like that the bright boy won't be able to live on his own, but he's a happy adult and loves living at home, so here he will stay. We were exhausted, scared, confused and heartbroken with our son's diagnosis, but we worked hard to help him, we coveted the little sleep we could get, and we got a massive wake up call when he was nine and had a stroke. Nearly losing him, knowing that we can lose him because of his blood clotting disorder, got us over any pity party we might have entertained and we set about creating a life for him that provided him with emotional stability and value. We home-schooled him since he couldn't do the schoolwork his classmates were doing; plus, he was bullied and unhappy at school. When the girls were born, as they grew, our adjustment to the reality that they, too, were on the spectrum was an easier one because of our experiences with our son. We were still tired, but we were no longer panicked and we were nowhere near desperate. We had also learned to see ourselves in our children, to find the traits we held in common. We joke now and say "what did you expect when two uber-geeks and nerds married?"  They got our best traits, and they got our biggest issues, just magnified.

 

What is their exact diagnosis? And what does that mean in laymen terms?

The bright boy and the youngest girlie have autism, and the older garden girlie has Asperger's, although with the new DSM coming out, that won't matter, will it? We simply say they are on the spectrum.

 

What are 3 things you wish someone would have told you about autism that you had to learn on your own?

  • That developmental delays do not mean developmental stops. The bright boy's progress was often incredibly slow, but he's still making progress today, at age 20.
  • That the idea of a lack of empathy is incorrect; they are extremely empathetic, but they have to notice it.
  • That you will come to appreciate the refreshing honesty that your children offer you. That you will survive and thrive and so will they, if you give yourself time to adapt, if you will surround yourself with people who care, and if you accept that there will always be challenges.


What or who has been your greatest resource for information and support during this time?

I've relied a lot on research articles; I went back to school and earned a master's in psychology so that I would understand where the psychologists were coming from and so that I could better advocate for my children. But, I've learned the most about living with autism from the wonderful individuals on the spectrum that write blogs, Facebook, engage on forums on the Internet and from my three children.

 

What's been the most challenging part of dealing with a child with autism?

Working to balance the need for order and regularity with shaking up their world just enough so that they learn to adapt, and to distinguish which behaviors are not preventable and not intentional and which are typical kid behaviors that require a different approach. On a personal note, learning to accept the momentary heartaches that pierce me as milestones are missed and their peers pass them by. It was often especially hard with the bright boy and it was heartbreaking when we had to get guardianship of him at 18. It gets easier, though, when you remember that he's happy.

 

Tell us something about your children that is special or unique.

I love how deeply they feel, how easily they laugh, how their minds work, that they each have specialized areas of interest that we can explore together.

 

Finally ... The debate around the cause(s) of autism is very heated right now. What do YOU think causes autism?

I've been very fortunate to have access to wonderful academic libraries from the very start of our autism journey, and the time and inclination to pursue a scientific-based perspective on this. There weren't any books out there, other than Bettelheim's, pointing to vaccines or poor parenting. I read the research, a fair amount of it as it came out, and there was no struggle to work out the cause. My children are so very much like my husband and me and extended family members, but with more significant issues. All three pregnancies were very difficult. The literature is more than clear in indicating that genetic influences along with in-utero trauma almost certainly set autism in place by birth. My children didn't regress; they didn't gain abilities and then suddenly lose them; they were who they are from the moment of birth.

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cafemama cafemama

Thanks so much for sharing. I learned a lot reading this.

nonmember avatar Emily

Kim, I knew much of your story, but I never tire of reading your words. What struck me most about this interview was when you said, "They are extremely empathetic, but they have to notice it." Absolutely the best phrasing on this I've ever seen.

jones... jonesblair

I had twins that almost reached the spectrum..I felt so guilty for going against all my dad had been so adamently against - vaccines. They seized over and over, stunted growth - milestones, etc., I let them administer the vaccines, grimacing all the while - for what? FOODSTAMPS!! Four hundred for the boys. It was "mandatory" in order to receive the welfare. Since then, I haven't let them do it to my boys ever again. And since then, 5 years ago, I have studied for at minimum 3 hours a day with a study group and am absolutely, positively, one hundred percent sure it is vaccines. Madam, when and where did you have your baby? In arizona, a hep b vaccine is administered within the first 12 hours of life. THAT, right there starts the ball rolling...and rolling fast. Please, please go study more. Spend some time readingm reading, reading. You'll get MAD, YOU WILL BE SO SAD AND MAD AFTER YOU find out that it was ALL unnecessary. You really CAN have a healthy, happy, baby. I am only telling you this cuz', damnit, I really do care and want to help save even a few babies. start with www.nvic.com and www.drcarley.com and www.vaers.com

3Bear... 3BearsMama

My dh, our oldest daughter and possibly my youngest daughter are all on the spectrum. My dh has SEVERE ADD and the eldest was dx with Aspergers 2 years ago, and the youngest daughter is showing signs of ADD and emotional issues of some sort. I did not know about the controversy about vaccinations when our girls were all babies, but when I had my oldest tested using EAD/EDS for other issues the fact that pertussis was still in her bladder and kidneys from shots received many years ago, I started to read up...regardless of your belief if autism is caused by or triggered by vaccinations, the information alone should scare anyone into at least being informed and picking and choosing shots carefully depending on where you live, family genetics, etc...I, personally, believe that it is a DEFINITE contributor if not the specific cause. I love and live with 2-3 people on the spectrum and can't help but wonder about the cause, yet choose to dwell on what we can do now. There are some very interesting articles and sites that I would love to utilize but now that my dh (obviously) and dd (17) are too old to dictate what they eat, I will have hope that if my youngest is indeed dx with an ASD I can actually put these to test and see if they don't improve if not remove the symptoms that we all have to live with. Granted, all the symptoms aren't aggravating but if it is possible to make the most of who they are and the quality of their relationships, I am all for it.

nonmember avatar anon

There was a special on Autism on HBO last week on Awareness Day. They mention that the "reverting" that is sometimes pinned on vaccines was documented very clearly starting in the 1700s - children known as "fairy changelings." Children went to bed normal and woke up a changed child, as if they were possessed.

Also, quite a few vaccines are given without thimerosol or can be requested without it. For those who say you need to research this so you can see the 'truth', follow your own advice before deciding which side of the fence you are on. I don't know the answer, but as a scientist who cares about my fellow human beings, I will read all scientifically accepted studies and vaccinate against propagation of communicable diseases.

nonmember avatar Mom

I have suspected my eldest to have Asperger's for a long time and now I have another on the spectrum it doesn't seem so far fetch to doctors. There is even speculation about my other children. I think the hardest part for me was being blamed for how my children behaved no matter how much I did for them.

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