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Special Needs Parenting (SNP): I did NOT sign up for this!
by Jodi Hobbs-Saunders,
Mother and home educator of two special needs children
Jun 03, 2012 | 1991 views | 0 0 comments | 11 11 recommendations | email to a friend | print

C: You’re going to hit those people on the bridge and kill them. Aaaaahhh!

C: Is there a state where U-turns are legal? Can we move there so you won’t be breaking the law anymore?

C: Just admit it. You’re confused. You have no idea where we are. You’re lost. We’ll never find the highway and get home.

Then he came home, got out craft materials without asking, drew two poster-size pictures of traffic lights and taped them to the walls with electrical tape. Clearly, we got home. I plead the Fifth on the U-turns. There were no news stories that night about bridge hit and run victims. There might have been a man who actually got in front of my vehicle and waved me from turning onto a one-way street … but I’m not discussing that either.

This is a description of a recent car ride home from an optometrist appointment with my 9-year-old Asperger son Connor in the backseat. The diagnosis of Asperger’s falls on the Autism Spectrum, which is a range of symptoms including deficits in communication, social skills and restricted/repetitive behaviors and interests noted by the age of three. Children on the Autism Spectrum often have other conditions occurring at the same time, as such my son is also diagnosed with bipolarism (a mood disorder causing often quickly changing extremes in mood) and Attention Deficit Hyperactivity Disorder (ADHD). Individuals with Asperger’s feel compelled to follow rules. This can apply to both rules they have learned about the world (such as traffic laws) to rules about play they may have created for their own toys.

Connor has many behaviors that isolate him from “normal” people. He recently took electrical tape and made lanes all over our laminate wood flooring. Even I can’t figure out where it’s permissible to walk and have received the equivalent of several “jay-walking” tickets. He spends hours building and programming complex Lego Mindstorms robots that walk, crawl and roll like a tank around our house. He rocks back and forth, vocalizes/hums and hits himself in the head when overstressed. Connor needs to eat and drink every three hours (almost to the minute), or he becomes incapable of higher reasoning and violent behaviors can occur.

Sounds pretty dry, doesn’t it? It might strike you as a mix between way too much medical jargon and some bored housewife’s wannabe Kardashian 15 minutes of newsprint fame. I only wish that were true. I didn’t agree to write a column for the same small, hometown newspaper that serves the area where I graduated high school quite a few years ago to brag about how glorious my current lifestyle happens to be. I’m writing about exhausting, embarrassing and frustrating details of our daily life to help educate others who, perhaps, see that their young child seems a little different but is getting the brush-off when they question their pediatrician. Maybe these writings will help other parents muster the courage to seek a second or even third opinion.

I’m writing to let other caregivers who are depressed by the often overwhelming nature of being in charge of every facet of another human being’s medical, psychological, social and educational care on a daily basis that they are not alone. I am the primary caregiver to two special needs children. Their medical and psychological diagnosis make their childhoods difficult for them to go to school and form friendships like other children. The same diagnosis have finally forced me, after running my own business for seven years, to close my doors and devote 100 percent of my time to their education and medical appointments.

I’m proud to yell from the rooftops that I wouldn’t have it any other way. Yes, my days and nights are long, thankless and frequently full of tears (not to mention endless medical bills). While we are unable to conclusively diagnose famous historical figures now, it’s been theorized that several notable minds that changed the world possibly had Asperger’s like Albert Einstein and Isaac Newton. I remember the day the psychiatrist told us Connor’s Asperger Syndrome diagnosis. When we got home, Connor asked me what “syndrome” meant. I told him the doctor misspoke, that there is no such thing as Asperger Syndrome. At our house, we see Asperger’s as a gift because we are lucky enough to think outside the box and see the universe from a viewpoint few will ever share with us. As his mother, it’s my job to ensure Connor understands how very precious that gift is and how it’s worth every sacrifice we make for it.

Editor’s note: We don’t know how this article made it into our paper; it is possible that some nut hacked our system again. In the rare event you enjoyed it, however, please comment on our FB page and/or contact the author at snp.ididnotsignupforthis@gmail.com.



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