A while back when I sat on a TVO panel about raising kids with special needs, the host asked me: “How does a parent know that they’re doing enough? That they’ve done everything they can?”
At the time I thought this was a bit of an odd question. I can’t imagine the parent of a typical child being asked: “Are you doing enough?”
And implicit in the question is that if we “special-needs” parents only do enough – get our child the right therapy at the right intensity at the right time – our child will “overcome” their disability.
My answer was that most of the parents I met were superhuman in their attempts to get their child the best therapies and support them in every way possible.
I was reminded of that last weekend. One of the parents on the unit told me that she spent $30,000 to get her son private speech therapy. To pay for each one-hour session she had to work one-and-a-half days as a cleaner.
I noticed a Dad who was always here on the weekend. Weekends can be long and slow and a bit sad, I find, at the hospital. There aren’t as many activities going on. Many staff aren’t here and some inpatients go home. It’s lonely. No one wants to be in hospital, but especially not on a weekend, when you expect to be out doing things.
On Sunday as I was about to go home with my other kids I bumped into this dad. He mentioned that he was leaving too. But he was about to walk out to Bayview and begin a 90-minute TTC route home.
I was exhausted and could barely cope with driving 10 minutes home and I couldn’t fathom how this man was about to begin his journey, which would certainly be unpredictable on a Sunday night.
Now I knew what it entailed for this dad to spend the weekends sitting with his son. He didn’t want his son to be alone.
I think most parents of kids with disabilities do more than enough.
At the time I thought this was a bit of an odd question. I can’t imagine the parent of a typical child being asked: “Are you doing enough?”
And implicit in the question is that if we “special-needs” parents only do enough – get our child the right therapy at the right intensity at the right time – our child will “overcome” their disability.
My answer was that most of the parents I met were superhuman in their attempts to get their child the best therapies and support them in every way possible.
I was reminded of that last weekend. One of the parents on the unit told me that she spent $30,000 to get her son private speech therapy. To pay for each one-hour session she had to work one-and-a-half days as a cleaner.
I noticed a Dad who was always here on the weekend. Weekends can be long and slow and a bit sad, I find, at the hospital. There aren’t as many activities going on. Many staff aren’t here and some inpatients go home. It’s lonely. No one wants to be in hospital, but especially not on a weekend, when you expect to be out doing things.
On Sunday as I was about to go home with my other kids I bumped into this dad. He mentioned that he was leaving too. But he was about to walk out to Bayview and begin a 90-minute TTC route home.
I was exhausted and could barely cope with driving 10 minutes home and I couldn’t fathom how this man was about to begin his journey, which would certainly be unpredictable on a Sunday night.
Now I knew what it entailed for this dad to spend the weekends sitting with his son. He didn’t want his son to be alone.
I think most parents of kids with disabilities do more than enough.
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8 comments:
I never feel like I am doing enough though and I think that if my son didn't have delays I wouldn't feel as bad, it's too hard on us moms.
Louise,
If we are to be completely honest, the answer to this to question is the same as it would be for any other child, disabled or able bodied: "has the parent done all they can?" With this in mind, I acknowledge that most parents of children with disabilities must be supernatural in order to assist their kids. In short, "It's part of the job." Moreover, I also believe that the majority of Mothers of left holding the bag, as most Fathers aren't like D'Aracy of the loving soul mentioned above.
Thank you,
Matt Kamaratakis
Hi Elizabeth -- I'm glad you found us and I look forward to hearing more about your son.
I think the reason why you and many of us parents feel like we're not doing enough is that the focus, especially when kids are young, is on rating where their development is compared to typical peers and focusing on what they can't do. That puts a lot of pressure on parents and makes it hard to accept and enjoy their kids for who they are.
Hi Matt -- The answer should be the same for any parent, but what I was trying to get across was that people don't put that kind of judgment on parents of kids who don't have disabilities. No one would ever ask me if I'm doing "enough" for my other children. It's just not a question they would ask. But that question is seen as being legitimate for parents of kids with disabilities. And I think that's because there is a perception that through intervention our children can be "changed." And while many children can benefit from therapy, some will always have certain disabilities.
How did your meeting with the surgeon go? I hope you liked him/her and got some good information. Have a great weekend!
I did think that question was odd and wondered if that was my perception or if the interviewer did think ' that if we “special-needs” parents only do enough – get our child the right therapy at the right intensity at the right time – our child will “overcome” their disability.'
I believe that most people probably think that. I always understood that therapy was the answer for disability - until I had a child with a disability ... :)
I received my copy of bloom today! thanks!
Lisa
What a strange question, it should have been more about that feeling, I think that most of us have at some point, that we are not doing enough.
The "are you doing enough" for parents of typical kids... hm, maybe the only comparison would be the (competitive kind of way)parents may discuss which private school and what out-of school-activities they are looking for - it's not a formal question.
Whatever happened to "the good enough mother"?
"good-enough mother," the imperfectly attentive mother who does a better job than the "perfect" one who risks stifling her child's development as a separate being.
Donald Winnicot
Hi Louise,
Thank you for explaining your question and point of view to me, as there are so many thinks that I wish to share. Hence, I'm to take a few days to write my response and send to you via email. What you decide to do with it is entirely your choice.
With regards to my doctor's appointment yesterday, I am finally going to receive some help. As in turns out, I am a good candidate for a "left tibia rotational osteotomy", as it will keep me walking and active. However, I'll probably need the some procedure proformed on my right knee at some point. One must also keep in mind that there an 18 waiting period. Needless to say, "This isn't Sick Kids or Bloorview Kids Rehab." I will share my experiences with everyone, so parents may prepare themselves for the future-- in this respect, the battle is far from over, but no will be in dark.
I also promise to continue to be here for you and Ben.
Have fun with all your kids this weekend.
Matt
With this i
YES
i have many grateful parents on my caseload, but i always, always, Always tell them that they are the main reason their child is progressing--even if i did daily therapy with their child, they are with the kiddo the other 23 hrs/day. parents are amazing.
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