Thursday, March 27, 2008

what does it mean to be the parent of a child with special needs?

it means you're going to have to fight. it's almost one of the first things you learn. but i have to say we've had it pretty easy. no major battles as of yet. our biggest issue is calling the eye doctor to express that we're having concerns about our son's vision and we'd like to move up our regularly scheduled appointment, their response was we have an opening 5 months from now which is only one month sooner than our regular appt! frustrating? yes, battle? no. you just call "Super Pediatrician" and the eye doctors office calls back first thing the next morning explaining they have an opening tommorrow. but "Super Pediatrician" can't help us with this one. this is going to sound foreign to most but PA is considering adopting a "Consultative Model" for therapy services. the short of it is that instead of seeing your physical therapist, your occupational therapist, your speach therapist and your developmental teacher on average of an hour a week, EACH, you'll now only see the developmental teacher regularly and other therapists much much less as they will teach you everything you need to know, so you can essentially do it yourself. ha! DIY therapy, the title to my new book. why go to school to become a therapist when you can do it yourself! to big budget balancers in the government that sounds like a great savings, to a parent of a child with special needs it sounds like you're throwing us out to the curb..... before i rant and rave i'll sum up my feelings with my letter to those who can make a difference.

To Whom it May Concern,
We’re going to be parents! Oh how exciting. I always knew I wanted to be a mother. Now I’m at the right age, I married to a wonderful man, and it was so easy. I can’t wait for this little one to arrive. We’re going to go for walks, take them to the school bus stop, and go to baseball games in the summertime. I have so many plans…. The results from your amniocentesis are in. Yes, your baby has Down syndrome.

Millions of babies are born each year. There’s no prior schooling, you just have to be of reproductive age. It’s very natural. Many people plan on this their whole lives. No one plans on having a child with special needs. I was never educated in caring for a child with special needs. What am I going to do with a child with special needs? I’m going to love him. I’m going to care for him. I’m going to defend him until I no longer have breath in me. All those things come without trying. It happens when you learn they’re growing inside of you. It happens when you labor to bring them into this world. For me it was automatic. The best way to support him while he’s learning how to walk, the right way to spoon feed him so he doesn’t end up with an entire meal of sweet potatoes up his nose and down his chin, the right things to be teaching him so that we’re pushing his development and helping him strive to be his very best, those are the things that I’m now forced to learn. My peers watch their children crawl when children are supposed to crawl, walk when they are supposed to walk. Their children guide them to the next step, the next developmental milestone. Meanwhile my family continues to grow. Not only did I welcome a sweet baby boy, but I also gained a physical therapist, a speech therapist, an occupational therapist, and a developmental teacher. These loving, caring supporters swoop in to save my life and the future of my son. They provide me with the information I so desperately need. On a week to week basis. On a week to week basis my son is ever changing and needing new things. On a week to week basis I have new questions. On a week to week basis I add to my ever growing list of concerns. I already learn whatever I can from them and implement it into our daily routine, but I didn’t go to school for this. I have suddenly ended up in a crash course for early childhood development. Students in this field don’t go to class once a month. They don’t read a book on their own and get handed their diploma. Considering that most parents of children with special needs acquire quite an education from their children I cannot, in my wildest imagination, think of suggesting taking away the learning tools of these parents, the therapists. We already fight to enroll our children in typically developing programs. We already fight for the funding to give them everything that we possibly can to further development of these smart, loving, willing to learn children. This support team of teachers and therapists are the people who let us know what our children are capable of. They tell us to teach them, to love them, and support them and they show us how to do it. How are we supposed to help our children strive to be their very best if we’re left without our “textbooks”, without our “professors”, without our “education”.
I am striving to give my son all I can. He is entering Kindergarten, at a typical age of 5, with the ability to read and the love of learning. I will love him no matter what he accomplishes or who he ends up becoming. But if we’re looking for him to be his most productive self, someone who can give back to the community it’s imperative that you understand that he and I and my family would not be who we are today if it wasn’t for our “family”. Our “family” of physical therapists, speech therapists, occupational therapists, and developmental teachers, and the time they devote to our needs and to our education.


Anonymous said...

amen to that fara. It is the whole pendulum thing money needs to be saved so they cut back services but in 10 years when it because obvious that intensive early intervention is beneficial you will be sure to hear many more voices shouting out. You are an amazing parent of a child with special should write a book!

Caroline said...

What a beautiful and insightful post. You might not be into politics (like you say in your more recent post) but you are a well-educated, from-the-heart activist who fights for what is right. People like you will change the world.