Posts Tagged ‘lifelong care’
Do You See Us?
Do you see us? We are the parents who have always parented in an altered universe, and now we are being asked to live in yet another altered universe with no end in sight. Do you see us? We are the parents whose children highly depend on structure and routine to feel secure and safe and less anxious. We are the ones who need a multitude of people to support our child’s ability to learn, to play, to speak, to toilet, to eat, to walk, and to participate in the…
Read MoreAchieving Independence
I believe in honesty, transparency, and reality. So, I would be lying if I said I wasn’t scared about providing lifelong care to my son. And there are times when that fear can consume me. It will eat me up at 3 am if I let it. But I’m working on it. I’m working on managing my fears and worries. And I’m working even harder on teaching my son all that I can to help him achieve his greatest level of independence. I push. I pull. I teach. I hope.…
Read MoreWhen Parent Turns Into Caregiver
Being a parent is something I always dreamed of. Being a parent meant raising my kids to be great people, to teach them values like kindness and honesty, and hopefully send them into the world as adults who could make a life for themselves. When I was pregnant I imagined their milestones in front of us. Finishing primary and secondary school, hopefully onto college and graduation and lastly a career that they loved and that both challenged and fulfilled them. In the same breath I imagined myself and Brian as…
Read MoreThe Things I Took for Granted
There is this saying, and I’m sure most of you in the autism world have heard of it. Something to the effect that “special needs parents have a child in the newborn phase for many, many years longer than most.” I’ve been thinking about that a lot lately. How it’s pretty crushing, but it also couldn’t be more true. My son Noah still cries and screams to communicate most of the time. The only consistent words I would say he has are — “Pete” when he sees him on Mickey…
Read MoreThe Things Special Needs Parents Should be Talking About
There is a part of this special needs parenting thing that I’ve been thinking a lot about lately. I never thought about it when he was younger. Honestly, it never occurred to me as a thing to think about. I was so focused too. Focused on helping him in the moment. So this never occurred to me. But now that he’s almost 9, and we can breathe, and he’s at peace, it’s starting to creep in. This thing. This new worry. It’s seeping in around the edges of my acceptance.…
Read MoreAutistic Teen left with nowhere to live after his Grandmother Dies
If you ask any special needs parent about their greatest fear surrounding their disabled child, I promise you it will always be the same. Who will care for my child after I am gone? That thought has haunted me many times. And it’s a complicated question as well. My son will need lifelong care. He will be a man, not a small child. I don’t know where he will be cognitively. Or if he’ll be able to bathe himself. Or buckle his own seatbelt. I don’t know if he will…
Read MoreSkeletons in my Closet
I am so much older and so much wiser these days. And yes, so much more thin and worn out than when our eighteen year old daughter Jazz was given that autism diagnosis at age three. In those early days, I swallowed every book, watched every documentary, attended every autism-related conference in order to get a handle on this thing life had thrown my way. I was puzzled by the old moms I encountered and their silence. As a newbie to autism, I was naïve perhaps as to what changes…
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