Becoming a parent to a child with disabilities isn’t so different to becoming a parent to any child. You go into labor, push, push, push. End up with a C-Section anyway, but in the end, there is a baby. The baby is a baby, he’s my baby. I love him more than anything on earth, no matter what.
Then you leave the delivery room.
And all of a sudden the expectations can become overwhelming. As a parent of a child with disabilities you have to become a student.
First a student of medicine. The terminology must be deciphered; ASD that’s a hole in the heart…not a big deal, you learn after his first dentist appointment 2.5 years later, one out of every 250 people has one. But it was pretty scary at 4 days old.
Medical professionals spend about 2 hours learning about Down syndrome in medical school. They are told in that two hours that people with Down syndrome are profoundly mentally retarded, pacify the parents, dole out antibiotics, the kids will be sick all the time anyway.
Then after doing your own research, you find out there are actually vitamins that keep your baby from being sick all the time. But the medical professionals poo-poo them. Well, not all of them.
That is when you become a student of Human Resources, interviewing the medical professionals to find the ones that actually have taken time AFTER medical school to learn more.
Geneticist: An extra 21st Chromosome. Thanks to the Human Genome project now we know what in our bodies is on that chromosome and what might go wrong, or might not, it’s still a gamble.
You never stop learning more about the medical aspects. Continuous learning it is called in the professional circles.
Then you become a Comforter. Comforting the friends and family members who think it is awful your baby has a disability. Comforting new parents for years later continually telling stories of your beautiful baby and all he has accomplished as they sit in wonderment after a medical professional took all their hope away.
Then you become a Social Worker, learning the maze of available services, what they do, how they will benefit your child. And when your beautiful baby is three years old and thrust into the school system, you find out that you could have had more service, had you only known to ASK and your child would be more advanced developmentally had he received those services.
Oh, don’t forget those secretarial skills, filing, filing all those papers, evaluations, medical records…you never know when you’ll have to refer to them. And filling out endless forms, that all ask the same things over and over again.
The next Master’s degree is in Education Administration. You learned as your child left the Early Intervention years there were services left on the table, you have become more adept at asking the correct questions. Always looking for the appropriate classroom placement. Touring, interviewing and visiting every available classroom. Then because you ask all those questions, and seek help within the system, you are labeled a ‘Troublemaker’.
Then you get your Law Degree. By studying the Education Code you find the legal basis for your child’s educational options, and as you present those legal choices you get labeled again. As a ‘parent who won’t settle for less than the best’ for her child.
That cute baby.
Oh yea, Advocate, there is some of that in there too.
Then you major in Marketing. Public Relations. First you have to market your child to the educational professionals, who don’t normally teach children with disabilities in their classrooms. While you market your child, you work on your public relations, because, after all you have that label “troublemaker.” Your child’s future depends on your success. That’s a lot of pressure.
Then you major in volunteerism. Volunteering in the district then at the school, truly caring about all the students at the school. Truly caring about all the students in the special education system. Encountering the most wonderfully accepting people you could every dream to know. And encountering parents who have given up, and are on depression medication. Their children are left to “the system.” The constant studying has left them drained, nothing left to give.
Then you become a Psychology major. Then it turns out that your child isn’t allowed to have any behavioral difficulties. Students who don’t have disabilities aren’t held to as high behavioral standards as students with disabilities. And when your baby, your cute baby hits another kid, because he can’t say, “Leave me alone,” with his words he’s the one who gets in trouble.
Then you become a Behaviorist. Disciplining your child, as you are expected to do, and not daring to allow the other darling to have one bit of blame. It is your job to figure out WHY your child exhibits certain inappropriate behaviors, and advise the school personnel on how to deal with those behaviors.
Then you may become an author, writing about the experiences to help parents coming behind you to navigate more easily. Learning the publishing world—another Master’s Degree.
What will my next degree be in? I can’t say, I will know when the challenge arrives, and I have to crack the books on a new subject. I will refuse depression medication, and I will never give up for my baby, my cute baby.