Riding the Roller Coaster of Life with Autism
“Riding the roller coaster of autism” is how Kitzi Muniz describes what it is like to raise her four-year-old autistic son, Christian, in an article in today’s Portage Daily Register (Wisconsin). Another autism mother interviewed, Amy Crimins, has a 14-year-old son Blaine, who has Landau-Kleffner Syndrome, a rare neurological disorder that “may be misdiagnosed as autism” (according to the National Institute of Neurological Disorders and Stroke) and in which children often have seizures.
Crimins is also the autism consultant for the Portage Community School District and a number of her statements hit home for me.
“‘Every day we have laughter, and every day we have tears…… There are families who go through everyday life without much emotion.’”
“‘Parents are apprehensive about what they’re going to give their child or whom they can turn to……..That’s why a relationship with a school district is so vitally important — knowing and trusting that the district is going to provide the best that they can. There comes a point when you need to embrace your school district and its educators and work with them.’”
If I may extend Muniz’ roller coaster analogy, I must say that our life with Charlie has been the best ride of our lives, through every down and up.
And every unexpected twist and turn.
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POSTED IN: Education, Family, Parenting, Treatment, Uncategorized
7 opinions for Riding the Roller Coaster of Life with Autism
Joe
Jul 5, 2006 at 9:21 am
>There comes a point when you need to embrace your school district and its educators and work with them.
I’m willing to work with my district, but I’m not sure they are willing to work with my son. I’m not sure many of them understand the meaning of the word “individualized.”
Wade Rankin
Jul 5, 2006 at 10:02 am
To echo what Joe says above, we have spent two frustrating years trying to work with our school district. At one time, we thought we were making progress in establishing a partnership, but they continue to revert to their one-size-fits-none playbook. We have spoon fed the district what our child needs, and they continue to ignore their legal and moral obligations. And when our hard work at home, together with the cooperation of his teacher and principal at the individual school, result in some degree of progress, the district administrators slap themselves on the back and talk about how good a job they are doing. Our son’s progress is despite those administrators, not because of them.
Sorry to rant, but I’m afraid our tale is all too common.
Rose
Jul 5, 2006 at 10:56 am
Ben was in school for 6 years before we came upon a regular classroom teacher who got through to him. (She loved him, and ASKED to be his teacher…you can’t put that in an IEP!) His resource teacher during 5 of those 6 years was great, but regular ed teachers are so reluctant to give up the pull of the almighty, all-equalizing gradebook. But the teachers who got through put Ben first. He is a very bright student, if he feels you care for him and will work very hard, but he won’t give a hoot if you don’t.
We used to work 1-4 hours a night on homework. No one but a mom whose been through it understands, unless it is the teacher themselves. I have a sneaking suspicion each of Ben’s memorable teachers had a tough time in school.
With RTI, or Response to Intervention being a part of IDEA 2004…I’d hope once the onus is put upon the SCHOOL and not the CHILD…we will see teachers breaking their backs to give our kids the accommodations they deserved all along. At least Peter Wright thinks so…http://www.wrightslaw.com/idea/art/goodlaw.optimist.pw.htm
Frankly, this surprised the hell out of me…
Rose
Kristina Chew, PhD
Jul 5, 2006 at 11:34 am
Joe, Wade, and Rose:
I could definitely write quite a saga if I had to detail our last year experience with what is no longer our school district, as we have moved. For the first 2 years we were determined to do what we thought would be our part in the partnership, from advocating for teaching methodologies that we had found useful for Charlie at home to making ourselves a visible presence at PTA events and meetings (I was PTA co-president and newsletter editor one year), at special education parent meetings, and more. I can’t tell you enough about how…..awful…..we felt when we made the decision to take Charlie out of his classroom in that district, forever, back in November 2005. I can only say, at that point, I had pretty much stopped believing not only that any partnership could be possible, but that Charlie could be educated.
Now we’re in a new district and certainly worn and tired but (one hopes, one hopes on) a bit wiser. I don’t know. But if there is one place in which I will never give up advocating for Charlie, it will be in regard to his education. Learning is for life, I truly believe—-now I expect setbacks and obstacles and, yes, conflict. I hope to keep on smiling through it all.
Julia
Jul 7, 2006 at 1:25 pm
So far, we’ve felt reasonably fortunate with our district.
It’s small, and the school board and administration seems to be fairly logical and sane. I’m afraid that might change over time, in which case we’d have to look at other options, but so far, everyone has been interested in making sure Sam does as well as possible. Everyone. (And everyone working with him, except the aides, were at his last IEP. And if either of his siblings needs to go into the PPCD program, we know he or she will be welcomed with open arms.)
Kristina Chew, PhD
Jul 7, 2006 at 2:17 pm
I hope things stay that way—for Sam and your sake!
It’s hard as parents not to feel simply antagonistic towards administrators, for sure. I have been talking on and off to a colleague who used to be a superintendent and have been more than impressed by his compassion and care—-he did choose to retire as soon as he could.
Julia
Jul 7, 2006 at 2:32 pm
Well, the only relative I’ve had who ever was a superintendent was the superintendent in a district that gained great notoriety. :( So I’m not happy about him. (Never met him.)
I’m afraid that as the district gets bigger (it’s growing in population at an insane rate right now), it could get worse. At least right now the school board has indicated that if we have all our kids at the same age to be in the same school, they’ll give us whatever waiver we need to put any non-disabled kids in the same school as the special needs class. (A neighboring district is refusing point-blank to do this for one woman with twins, one not needing any special intervention, one autistic, so she’s got her kids at 2 different schools several miles apart, which I don’t think is good for anyone in the family.)
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