Family Autism Story: Three Kids on the Spectrum
Kim's a mom with three kids on the spectrum. Her oldest is an adult now, living at home and attending 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." She shares a bit of her world and valuable insight with us.
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 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 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 9 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.
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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 three things you wish someone would have told you about autism that you had to learn on your own?
1) 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.
2) That the idea of a lack of empathy is incorrect; they are extremely empathetic, but they have to notice it.
3) 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.
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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.
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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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