There’s a saying that when you’ve seen one autistic child, you’ve seen, well, one autistic child. Meaning that no two kids on the autism spectrum are exactly alike. Each child has their own quirks and struggles and trying to find the apples-to-apples comparison is nearly impossible.
And if you look at the autism spectrum, itself, you’d see that it includes autism, Asperger syndrome, and pervasive developmental disorder not otherwise specified or PDD-NOS (how’s that for definitive?). Although each of these three have their own definitions and characteristics, there are overlaps in symptoms and each seems to have higher and lower ends of behavior children will display.
Considering my own experiences with my son Matt, kids from his school, and following other blogs such as Lost and Tired and It’s a Wunderful Life, the truth of the matter is everyone’s experiences are different. The kids have their own set of problems but the parents also have a vastly different range of what (and how) they deal with on a day-to-day basis.
This, too, adds to the complication.
While the kids themselves are obviously the focus, they still are but one – albeit large – variable. Home environment, school, diet, access to therapies and healthcare, and parental involvement all have their place. There are others, but you get the point.
I still cherish the saying by Charles R. Swindoll that says “I am convinced that life is 10% what happens to me and 90% how I react to it.” In today’s terms, it simply means “attitude is everything”.
I commend my wife for spotting Matt’s speech delays early on. Without her quick actions, God only knows what our son’s situation would be today. Matt was tested, diagnosed and receiving three types of therapy before he was three years old.
Yet some parents aren’t that quick to react. Some parents deny for the longest time that something might be wrong. Others will sit back and say that it’s up to the schools to “fix” the problem. And still others will just accept that their child has autism thinking nothing can be done.
Matt has autism – the 10%.
The 90%?
Speech, behavioral, and occupational therapy prior to age three. Diet changes. Chiropractic care. An aggressive IEP (individual education program) agreed upon by us, the teachers and therapists at school. We also tried an incredible speech program for the iPad called Proloquo2Go.
With my new job and switch in health care plans, the first thing my wife looked into was autism coverage. As a result, Matt now receives additional speech therapy up to 45 sessions per calendar year. It’s not ideal, but it’s absolutely worth doing.
We also push social and group interaction with Matt and other children/adults. And although differences exist in how we raise Matt compared to his twin brother – our expectations for manners and proper behavior remain consistent.
And you know what? It’s working. I don’t know what part might be working better than anything else, but does it matter? Matt’s progressing in just about every way and I’ll be damned if I’m going to start second guessing the reasons.
Listen. Autism sucks. You’ll never hear me say otherwise. Yet I’ve said it before and will say it again: even with Matt’s quirks, I’ll match him up against just about any other 4-year old in terms of intelligence, behavior, manners, etc.
That kid has a great attitude. It would be a disservice to him if the wife and I did not.
My daughter is dyslexic. It took four years of private tutoring, twice a week every week, including summers, for her to assimilate the 26 letters of the alphabet, in order to access her education in a meaningful way. An hour or two of help every school night was a given. She was enrolled into the Honor Society at Saint Damian School in Seventh Grade. She was accepted into Marian Catholic High School. She went on to Saint Mary’s at Notre Dame, where she qualified for the study abroad program, studying in Ireland her sophomore year. Recently, she made Dean’s List, while carrying 18 hours. I’ve continued to give her help when needed, in both High School and College, and it’s only quite recently, 2nd. semester of her Junior year, that I’m no longer being asked to edit her papers. She’s currently looking into where she’ll attend graduate school as she’d like to teach Anthropology at the College Level, (while chaperoning digs during the summer breaks). Having taught in a public school system for 35 years, I never expected them to, “fix the problem,” as I knew the realizable help offered was a myth. Like you and your wife, I also never looked at the situation as a problem, but as my responsibility as her mother. Knowing how the system worked, I didn’t allow testing, until I knew she would never deliver the discrepancy in test scores needed, to qualify her for an I.E.P. I wasn’t about to license anyone with the opportunity to water down the curriculum or lower expectations for my daughter. Let’s not forget, the credit goes to her, as she never gave up on herself, taking dance and riding lessons, making volleyball, soccer, and tennis teams, while playing the flute in her grade school band and participating in the color guard, in an extremely, competitive, H.S. marching band program. I’ll admit, working inside the system had a lot to do with beating the system. I knew what questions to ask and I knew where to go for help. I learned how to hold an annual review without an I.E.P. I never hesitated to address anyone who treated my daughter less than a human being should be treated. I would be remiss if I didn’t mention, I am very familiar with how a parent’s heart breaks, at the site or thought, of their child drowning in school, nor am I not familiar with the sheer exhaustion that accompanies obstacles like HMO’s. However, I’m happy to report, that while living in a very modest home, driving a car for 22 years and sometimes skipping family vacations to afford these opportunities for my daughter, if I had to do it all over again, I would. Every time I look at her and see the beautiful, intelligent woman, God intended her to be, I’m reminded of that light in the tunnel, totally accessible to any parent of a child with special needs. Kudos to you and your wife! Your son is a very blessed young man!
[My daughter has an older brother, born with epilepsy that went undiagnosed, due to the HMO that wouldn’t conduct testing. He was socially delayed, but graduated from Saint Damian, Marian Catholic, and Loyola, (on time, did it in four years, after transferring from Holy Cross at Notre Dame, where he played college baseball and marched in N.D.’s band). He is currently applying to graduate school to become a physical therapist].
KEEP THE FAITH!
Hi Mary – indeed your daughter/son certainly overcame a lot and probably proved a lot of critics wrong along the way. And you’re right: it’s the kids themselves who absolutely need to have the right attitude if they want to overcome just about anything in life. We all do.
I can’t even imagine what’s going on in young Matt’s mind on a daily basis. Fortunately, he’s slowly letting us into his world (or perhaps just coming and joining us in ours). He’s got a lot more uphill battles to face, but so far he’s handled everything thrown at him pretty well – which certainly makes us all believe he’ll continue to do so moving forward.
All very true. The word “spectrum” is used with autism for a reason — every child with autism is different. I work with kids who have autism relatively often as a teacher, and it is incredibly true that they are all so very unique. I have had three students with Asperger’s and all three were different. Interestingly enough, only one of them had an IEP, though, because the other two were not diagnosed until they were in junior high. Both of those students’ parents didn’t consent to any testing or evaluation until 8th grade. It was so difficult as a teacher to see the signs but not necessarily be able to do anything official to help those students because there was no IEP in place. Once those students had official diagnoses and IEPs were in place, the kids were much better served in school. One of the students, a girl, had such a terrible time functioning in school until her IEP she ended up making strides during 8th grade and went on to high school with very little problem whatsoever. Early diagnosis is key to getting those important services! Great post!
I appreciate that ren and you’re right: the earlier the better! We’re happy with how things have gone so far. Yeah, it’s painfully slow at times but the results are there…
Wonderfully said, Mike. You are a gifted writer … think about it?
Thanks Rod. And while I like writing these little blogs – a) they actually take me a long time and b) I get to do them on whatever I darn well please.
Unless someone were to pay me a decent chunk of change to do that – I have no problem doing something like this on a part-time basis.
HMMMM … “decent chunk of change” means different things to different folks. Gates and Buffet versus a minimum wage person for example.
Maybe you can start by editing/proofreading my book before my final submission? A decent hunk of change here is a hundred bucks or so? Interested?