“Desperation” should not be a “fact” when raising a disabled child
An article in today’s Peoria Journal-Star highlights the “plight of parents caring for special-needs children” while saying little about the “plight” of the children themselves.
Libby Taylor, president of an autism support group, ANSWERS, and Dr. Sally Jo Winek, who has a daughter with cerebral palsy and works at Easter Seals in Peoria, both note how they “understand that ‘desperation is a fact’ when raising a child with disabilities,” while assuring that they certainly cannot “condone” Dr. Karen McCarron’s alleged killing of her three-year-old daughter Katherine McCarron on May 13th or Kellie A. Waremburg’s allegedly feeding her four-year-old daughter, Lexus Fuller, 100 over-the-counter sleeping pills and Phenobarbital on June 23rd.
- “The fact is that it is distressful (raising a child with disabilities). It is very hard. It could move any normal person to be a different person and consider things that they never considered before,” says Taylor.
- “My heart goes out to these two moms because I know what they’ve gone through. I know what it’s like. It’s overwhelming……My heart goes out to them because there isn’t a society right now that understands. You can’t condone what they did, but I can certainly understand the position they found themselves in,” says Winek.
The Peoria Journal-Star article, Opening Eyes, makes brief reference to “some” who have complained that “Katherine McCarron’s death is being
overshadowed by unnecessary sympathy for her mother”; only Stephen Drake, research analyst for Not Dead Yet, is briefly quoted.
I am an autism mother to nine-year-old Charlie, and I have been chronicling his and our family’s daily life for the past year on my blog, Autismland, and I have not been shy about discussing some very difficult moments (a spectacular tantrum on the playground, having to explain to the police why I had pulled over my car because Charlie was flailing, banging, and more in the back seat) or some very great ones (yesterday’s swim in the ocean waves, Charlie reading the words “car,” “yellow,” and “horse” this morning). And I am constantly taken aback to see life with an autistic child—-life parenting an autistic child—described as “desperate,” “distressful,” “devastating,” and in other negative terms. Yes, Charlie has been through some very tough moments—-yes, my husband and I have given up jobs and more to get him the best education that we could—-yes, I worry about Charlie’s future all the time.
And it is not only a good life, it a great life, that we live with Charlie. With and because of our autistic child. With autism.
And what would be truly eye-opening coverage about Katherine McCarron and Lexus Fuller is not more and more negative reports on the “toll” of raising a “problem” child, but something a lot more positive. Like about the toys—a red Teletubby, Po—-that Katherine liked, according to this photo, or what made her smile, as in this photo. Or of how Charlie rubbed his head after getting a crew-cut with Michael the barber, or how he stands up to pedal faster on his bike, and how that light comes into his eyes.
And about how living with, raising, and loving kids like Katherine and Lexus and Charlie is, or should be, a story of hope.
And this message of hope needs to be broadcast over and above any more reports of the “tragedy” and the “toll” of raising a disabled child.
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POSTED IN: Crime, Disability Rights, Family, Media, Parenting
14 opinions for “Desperation” should not be a “fact” when raising a disabled child
Valerie Brew-Parrish
Jul 9, 2006 at 3:08 pm
Bless you Kristina Chew. Your words are simply eloquent & Charlie is lucky to have a mom like you. I am so revolted by the myriad of comments that are coming out of the parents with kids with disabilities. They should have a banner that reads, “my kid is a burden. . .poor, pitiful, me.” Every time I had a success as a child my mom rejoiced. She took me to the school down the street and made me climb stairs to strengthen my partially paralyzed leg. Then, my mom would carry me home. Society made me feel like a burden but never my mother. Other kids with disabilities that I grew up with were not so fortunate. Some were abused, neglected and unwanted. The emotional scars from their families will last a life time. Scars on the soul do not heal. My grandson who has autism is a joy. And, yes there are times he has melt downs and finds it difficult to interact with others. But not a day goes by that we don’t thank God for letting this child be a part of our lives. All children need to be loved. Killing them is simply not an option. We must keep speaking out against these truly revolting parents with their whiny and self centered agendas.
Valerie Brew-Parrish & Richard Parrish
Kristina Chew, PhD
Jul 9, 2006 at 4:22 pm
Valerie, thank you—–it is thanks to parents like your mother and grandparents like you that things have been “easier” for my husband and me as parents of a disabled child. Life with Charlie can be quite an adventure and it is certainly one that I more than embrace and, indeed, take joy in.
Kassiane
Jul 9, 2006 at 5:25 pm
Send this to the gross PJS reporters? And the editor? Please?
Me calling them eugenicists and calling them on condoning murder isn’t working. I’ve lost patience though, the nice way isn’t working.
Meg
Jul 9, 2006 at 6:18 pm
I love both your sites, and can relate to many things you write about.
Hear, Hear to those of us who would give up everything, and change nothing for our quirky kids.
Kristina Chew, PhD
Jul 9, 2006 at 9:49 pm
Am sending this to the PJ Star. For sure.
And loving my “quirky boy” more than ever!
Vidya Ganesh
Jul 10, 2006 at 12:48 am
Thanks for this ‘message of hope’ Kristina. You are truly an inspiration. May god bless you, Charlie and your family. May god bless all those wonderful parents all over the world.
Mike McCarron
Jul 10, 2006 at 6:17 am
Kristina, thank you for posting this, it is a great article. You really care and it shows.
In previous posts I have stated that as soon as I read the lead in line “I don’t condone murder, but……”; I usually have to buckle my seat belt, because someone is going to tell me that due to the toll of autism they can “understand” getting to that “place” or “circumstance”. The place they “understand” getting to is a place where a person holds a plastic bag over the head of a three year old girl until all of the life is drained from her. They claim to understand that place. It is truly amazing that people with no facts, are so willing to draw conclusions and make these sweeping statements.
I don’t see anyone out there concerned over the “toll of murder”. Murder is a topic where words like “devastating” really apply. I have not seen a word about what it is like for a father to bury his daughter. His support group had to stand on either side of him in case he fell over from grief. My heart goes out to him and to Katie.
Murder is not an “understandable” option. Don’t kill little children! If these people can not accept that without equivocation, then they should not be allowed to offer support or advice to anyone.
Mike McCarron
Katie’s Grandfather
Kassiane
Jul 10, 2006 at 10:09 am
Mr McCarron,
Thank you for your continued posting. Your words are powerful. You are Katie’s strongest defender, and the defender of the other victims of the ultimate parental selfishness.
Thank you for letting us join you in the battle for the kids, and the battle against “support” groups that aren’t.
Stephen Drake
Jul 10, 2006 at 10:33 am
I agree, Kassiane.
I’m headed out of this state for a few days starting Saturday morning.
Mike, before I *do* leave, I would like to email this latest message of yours to virtually every “advocacy” contact I have in the state and label it a reaction to the latest coverage in Peoria - and commentary from ANSWERS and an Easter Seals employee.
–Stephen
Kristina Chew, PhD
Jul 10, 2006 at 11:07 am
“Support groups that aren’t”—–that is quite an oxymoron, indeed.
Mike McCarron
Jul 10, 2006 at 3:11 pm
Stephen,
Use my posting as you deem appropriate. I feel that Kristina’s original post is much more powerful. It sends the message that every group should be picking up and using. Her post defines the acceptance and love that must be showered on all children, with and without autism.
Mike
Kristina Chew, PhD
Jul 10, 2006 at 8:37 pm
Mike, once again I am honored to hear your words. I am contacting the PJStar and its reporters.
Autism Vox » Karen McCarron, Alison Tepper Singer, and misplaced compassion
Jul 11, 2006 at 7:41 am
[…] I am more than familiar with the “autism reality” presented in the Autism Every Day video. My son Charlie is no savant—just learning to read some sight words and one great bike rider and ocean swimmer—-and he has done and does plenty of the behaviors (head-banging, biting, screaming on top of manhole covers in public places) that lead people to associate autism with words like “nightmare,” “devastation,” and “desperation.” […]
Jury Selection Begins in Trial of Karen McCarron
Jan 2, 2008 at 11:42 pm
[…] was killed and about her lawyer’s repeated efforts to postpone the trial—and about why desperation should not be a fact when raising a disabled child. WMBD (central Illinois) also has a […]
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