This morning I started thinking if there was just one thing I could tell families of children with disabilities who are just starting out on the journey that we have been on for so long… what would that be?
Here is my answer:
I just want to offer one suggestion for parents of young children with disabilities or those with children newly diagnosed… So often reading topics in this parent group, I feel really OLD because my son with disabilities is 16, actually he will turn 17 in May!
Julian’s life changing brain injury happened when he was three months old; it’s been a long journey for us. He was only 7 when the most life changing thing happened to me, I was selected to be part of Partners in Policy Making in Texas. The first week-end of Partners training you meet an amazing mom, advocate and author Kathie Snow. That meeting changed my life and how I view everything about my son’s life….
Not every state offers Partners in Policy Making anymore (dang budget cuts!) but you can still read Kathie’s book “Disability is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities.” Kathie also has a website full of great articles at www.disabilityisnatural.com
I love my dog eared copy of her book, and often reread it to refresh and recharge myself. It’s hard to explain to people who haven’t read the book or embraced Kathie’s philosophy on life, but for me the big change was to stop apologizing to the world for having a child with a disability and instead accept and appreciate the miracle of life that Julian is. He is as much a human being as anyone else on this planet, and he has a right to a life as full and vibrant as he wants it to be. Kathie has a “so what” attitude about disabilities. It doesn’t matter what kind of disability or how many labels… our children are people first.
Let me give you two quotes from her book and then I will get off my soap box.
In her book Kathie says, “I spent the first three years of Benjamin’s life wondering when things would get back to normal. Then one day the sobering realization hit: this was normal for our family.”
One day her son Benjamin told her he didn’t want to go to therapy anymore, he just wanted to be a regular kid. Kathie says, “I heard him – finally- and on that day, we were set free. Contrary to the dire predictions of professionals, the sky didn’t fall when we said no to special ed preschool, and then no to therapy. In fact, just the opposite happened: Benjamin (and our family) thrived. Along the way, I regained the common sense I had lost in the jungle of professional jargon, expert opinions, conventional wisdom, and intrusive interventions. Our lives were once again our own. We were back to living normal, natural lives. We left clienthood behind and rejoined our community as citizens. Your child and your family can do the same. And you can begin dreaming for your child again.” (pg 11)
So…. this email is NOT an advertisement for Kathie’s book, just a small piece of advice from a parent who feels like an old hat in disability world to parents who might be at the start of a journey. Please don’t apologize to the world for having a child with special needs, take the “so what” approach and start expecting the world to treat your child like the amazing person that they are, start expecting your child will be included in everything just like everyone else because they are PEOPLE first. When we as a community start acting like our children with their service dogs are a normal every day part of the community we live in, the community will see this as the new normal…. because it is.
When we approached the school district about the SD going to school with Julian we assumed it would be the new normal and didn’t offer the possibility of no. Yes, our lawyer was at the IEP for other reasons, but my approach was still the same…
When we enrolled Julian in Tae Kwon Do, we didn’t ask the director if he was comfortable with a blind student… instead we acted like it’s perfectly normal for a blind kid to take martial arts and approached the director with the attitude of what can we do to make this a great experience for Julian AND the other participants. My list could go on and on and on, I just wish all parents could have the confidence to approach things like this is perfectly normal… because for us it is!
I have brown hair, you might have red hair or blonde hair. So what!? My child can’t see as well as yours might, so what?!!? That doesn’t take away the one thing we all have in common, the human experience. We are all people first.