Whenever I discuss Ethan’s autism with friends and family, the conversation usually centers on how he is sleeping (or not), or what progress he is making in one of his therapies. We might also talk about milestones he has reached, but until recently, I’d never discussed my hopes for his future.
I was catching up with an old friend and she wondered what I hoped and dreamt for Ethan’s future. I had a surprisingly difficult time answering that question and our conversation made me realize how much I avoid thinking about the future. Of course, I hope most of all for his happiness, but I hadn’t really thought beyond that.
It’s much easier to envision hopes and dreams for my future self. More than anything, I hope to join the ranks of those parenting special needs children who have found peaceful acceptance of their child’s condition. I’ve felt it before, but it was brief, fleeting. About one year after we learned of Ethan’s deafness, I embraced the beauty that is American Sign Language and felt a sense of pride that my little boy could be part of the deaf community. It seemed like less of a disability and more like an opportunity, a membership to an extraordinary and mysterious culture. That’s what helped me cope with the notion that he may never hear or speak.
I’m not sure where to look, or how to find this same source of acceptance with his newest diagnosis. Rather than celebrating his difference, the activities and therapies we do now seem more like a rejection of who he is and who he’s becoming. It’s just a matter of perception, really. So how do I change this mindset?
For now, I stay focused on the blessings in our lives, and I think that’s pretty effective for the most part. I look at all the compassionate people that work with Ethan and the friends and family who “have our backs”. I thank God for our health, that Ethan is alive and healthy, that we have a roof over our heads, and food on our table.
What else can I do?
Ethan actually hears now thanks to his magical cochlear implants. He has been learning to speak, too. He’s full of surprises ;-)
That is a very beautiful post. I think you articulated what many parents feel about the push (through therapy) to "change" their child, vs accept their child.ReplyDelete
Also, I don't think acceptance is a destination that you finally get to. For me it is more fluid and back and forth. So you don't need to pressure yourself to "get to" the finish point of acceptance, because I don't think it exists.
I think happiness is a pretty darn good goal for every child in terms of their future. Many parents who have typical kids never truly figure that out.
I hope you hear from some parents of kids with autism who can talk about how they struck a balance between therapy (which can feel like a rejection of who your child is) and acceptance.
That is AWESOME that Ethan is hearing and speaking. And I remember a year or two ago seeing the most adorable photo of him on your web site and thinking "what a great kid!"
Oh thank you Louise!ReplyDelete
I haven't even considered that acceptance isn't a final destination. I see what you're saying and it makes perfect sense. We are all going to have good days, and bad. Days when we beam with pride, and days when we fall down. That's life no matter who you parent.
I guess I just want to find "easier".....
I'm 21 and was born bilaterally profoundly deaf. I have a cochlear implant, which I got a mere 2 years ago. I LOVE my implant, I ADORE music, and I too am learning to speak. :) Getting Ethan implants was a wonderful decision that will allow him access to a whole new world that he would not otherwise be able to access because of his deafness. He will hear the laughter and chatter of people in a busy mall, the quiet chirping of birds outside a window, and his own voice, as well as that of his mother. :) It is NOT a rejection of his deafness or anything- it is just another tool you are handing him. I hope nobody in the deaf culture gives you any trouble about it.ReplyDelete
Ethan is adorable. My stepbrother has autism and used to speak in scripts ALL the time and hardly made eye contact. Now, he seems ... well, almost "typical" for lack of a better word. Based on my experience, I'd recommend reinforcing joint attention and trying to teach him empathy through showing him that his actions affect others.
Good luck :)
Wow! Thanks Tasha! So glad your inplant is working out for you!ReplyDelete
It has been just over two years since we got an official diagnosis of autism for our daughter. I remember the days leading up to the diagnosis during which I knew already what the answer was but resisted with all my might...praying, pleading that it would be almost anything else. Our prior experience with autism made it especially hard to accept the notion that this disorder could be the root of our daughter's struggles. When I let it the fear eclipse everything. I especially dreaded hearing the words fall from the doctor's lips. It was hard, but the world kept turning, and that alone helped me realize that after midnight comes dawn. We got busy providing the best supports we were able to, and my daughter's progress has been astounding. We view her various therapies (mostly through school) not as trying to "fix" her, but as supporting her efforts to reach her potential. We've all changed in the last two years. Acceptance in our family and in our community is an ongoing process, but it does get easier as we go.ReplyDelete