Wednesday, July 27, 2011

I don't like explaining disability

A wonderful social worker here at Holland Bloorview sent me a list of commonly asked questions by parents. 'How to explain your child's disability' was at the top of the list.

This made me wince a bit because when my son was younger I was more proactive in explaining his differences -- both to him and to others. But somehow I seem to have lost my touch.

Because of Ben's communication problems I've never been forced to answer questions because he asks them. When I do bring up the topic it's intentional and from my perspective. I probably don't talk about some of the harder aspects of his condition in a way I would if he was to question me directly.

I honestly don't know how much he thinks about his differences or whether he just accepts that he is different. The only recent question I remember is Ben asking when Darcy and I grew tall. He has severe short stature.

When Ben was young I explained his differences in a simple and functional way. For example 'he knows what he wants to say but his muscles won't listen to him.' Or 'he doesn't grow the way other kids grow.' Or 'he uses sign language to talk.' Or 'that's just the way his ears were when he was born.'

I had a more sophisticated explanation ready for the later years. I would explain that our genes are like an alphabet that when put into words and sentences tells the body how to work. But Ben is missing a couple of letters. So his body isn't getting the right instructions.

I've only used this explanation once, when one of my daughters had questions. But in general my other kids don't ask questions about Ben. And sometimes I think that's because they know it's still a painful subject for me.

I know it's my job to educate and reassure them. But sometimes I just don't have it in me to be upbeat and okay with his syndrome.

There's also a part of me that sees Ben as 'different' but not disabled and somehow lacking, which seems to be the common public understanding of the word disability. So there's a part of me that bristles against putting the focus on his disabilities when talking with him, his siblings or others. I’d much rather talk about how many fish he caught at camp or how his being fills us up so full that when he’s away our chests hurt. The first couple of days, we kept thinking we could hear him and had to remind ourselves that no, he was gone.

And perhaps there is even a part of me that wants to deny some of his disabilities. For example his intellectual disability. Maybe there's a part of me that believes that if I just don't talk about it, it isn't real.

Ben wasn't diagnosed with an intellectual disability until he was 13. He is hard to test, and the first thing the psychologist said when she finished was: "He doesn't have mental retardation. He has the ability to reason." Then he scored worse on the tests than she expected.

When we were preparing for his life plan day, one of the descriptors he chose to share was that he was smart (in addition to gentle and funny). And he is, in an unconventional way.

I was reminded of how I really don't like explaining Ben's disabilities the other day when I met with Gary Bunch, a scholar in inclusion at York University. Gary agreed to meet with me to talk about Ben's school placement next year.

Ben is not going back to his segregated school. He is going to a regular high school that has a unit for students who are deaf and hard of hearing. These students don't have intellectual or physical disabilities. They are quite typical other than their hearing loss. They have some classes in the unit and go with interpreters into regular classes as well. Ben wouldn't normally be placed in this program because our board groups children in special-ed by intelligence (I wonder if I’d developed my alopecia young if I’d have been placed in a class for only bald kids!).

The board is allowing this placement because I pushed for it and involved our school trustee and superintendents.

I have a lot of concerns about how Ben will do, but I know that I don't want him to live his entire life in a segregated setting and now is the time to prepare him for a larger future. As I spoke with Gary about the transition he reminded me of how important it will be for me to educate the teachers and students about Ben.
In the past I've never had to explain that it's hard for Ben to learn.

We never told Ben that he had an intellectual disability when he was diagnosed. I realize this probably goes against parenting and disability ‘best practices’ but a part of me didn't want to tell him that it's so much harder for him to learn. I was sick of the multiple health and physical disabilities he was already dealing with. Every time we got a new diagnosis, it felt like a part of him was being taken away. I didn't want to take anything else from him.

For some reason, talking about how his muscles don't work properly is so much easier than saying that his brain doesn't work properly. I don't want to tell him that, much less describe it to a class of high school students.

But I guess it's a part of coming to terms with my son’s syndrome, something I thought I had already done so long ago. It surprises me when it sneaks up on me, the grief and resistance that is still there after all these years.


Everything you shared makes so much sense to me. I really like how you place the focus on Ben for who he is...... as a whole unique, full and wonderful human being. I am not suprised at all.

sending a hug & compassion your way... i imagine this process spirals in ongoing surprising ways. keep breathing:-)


I miss you and Ben so much! I keep telling myself, "I want to visit Louise, but she has a job to do!"

Anyhow, I was 30 years old when I was diagnosed with multiple learning difficulties Needless to say, "It nearly killed me; I had already fought so hard to overcome my physical disability." Nonetheless, I am able to write better than most people. In fact, I would consider Amy Julia and you, my only equals.

Hence, I would never explain to Ben the full extent of his problems. I would, however, choose to share an element of truth that can only help him. Hence, tell your son, "Due to your disability, you learn differently --you learn like Matt."

I love you guys.

Thanks so much Barb. I am glad that you are here!

Thanks Tekeal. It is so good to hear from you. How are you and how is Livia? Any plans for trips to Toronto? xo

Hi Matt -- We miss you too. We'll have to get together in mid August when Ben is back.

Thanks so much for the idea of likening Ben's learning differences to yours. When we were in Chicago, we had a waiter who looked just like Ross from Friends and Kenold thought he looked exactly like you!

Hi Louise,

Your post struck a chord with me today. I am a generally upbeat person and I have always found questions about Caelan's disability extremely difficult to deal with. I really avoid answering these kinds of questions too deeply unless they are raised by someone who genuinely has a need to know. I outright side-step any questions from strangers or acquaintances who have curiosity only as a basis for asking. Sometimes I resent the fact that as a parent of a child with a disability we are assumed to be an open book - for professionals, friends and others. Sometimes I feel that by the time I have explained Caelan's multiple disabilities that I need to spend another 15 minutes talking about all the wonderful facets of his personality and all of his personal accomplishments just to tip the conversational mood back to a positive discussion about my son rather than a list of "can'ts".

Take care, Natalie

A disabled woman once wrote an article saying that her parents wanted her to be 'normal" like everyone else so they always integrated her into school and lots of other activities. As she got older she realized she had few friends with disabilities and had hardly even met anyone like herself. Eventually she did connect with others both within the disabily community and made some good connections. She felt like her disability was something negative or bad and not to be talked about. so sometimes is it O.K to embrace the entire person disability and all. "We love all of you. Maybe the disability is small part but its also makes you who you are. kids may hear the word at appointments, at school and many other places why does it have to have a negative connotation...are we victims of societal norms??
What makes us afraid to talk about? I guess its all in the way it balances out....Food for thought......Jill

During a group discussion with kids 7 to 12 years old with special needs at a camp this summer, we asked them how they would respond if someone asked them why they walk or talk differently? We all burst into laughter when after a child said he would say "I was born this way".... we started to sing the line from Lady Gaga's song "Baby I was born that Way!!!" and we are proud of it!! Bravo Kids!!!

Natalie! -- it is great to hear from you!

And I do 'hear' what you are saying and understand. Thank you so much for sharing.

I would LOVE to see Caelan again and meet your daughter. Let me know if you're going to be at Holland Bloorview at all!

Hi Jill -- Thank you for writing!

You make a very good point about not falling victim to social norms. I think we have to be very clear in our own thinking about what our values are and what matters.

I think it's very important for our kids to have relationships with people with and without disabilities and to talk openly about disability.

I think one of the reasons I wrote the post was to get across the idea that while parents may put on an upbeat attitude in explaining their child's differences, it's painful when the focus is placed on the "can'ts" -- rather than the person, as Natalie mentioned.

I hope to hear more about your experiences!

Hi Louise,
It can be really helpful for parents to explore their values and emotions. I think the woman who didn't meet disabled kids realized her parents wanted the best for her. Also your point about focussing on the cans rather than the cant's is so important. Sometimes peoples values and beliefs have them stuck or simply the grief holds onto them. Its good you have a blog to get people is a process and it's great when people can try to just be open a little. Sometimes it is the child that inspires people to grow and expand their world even in small but significant ways.
There is no perfect answer to this question...but great to explore it from different points of view. Jill

sigh it is hard. I hate the what is wrong with her question that I get sometimes from little ones.. I always answer Nothing! walking and talking is harder for her but she is working on it. I'm sure there is something better I can be saying.

I'm nervous about the choice I made for Ashley to be mainstreamed for grade one. I hope Ben's new school setting is enjoyable and the kids embrace him. Thanks for sharing your journey with Ben it has been very helpful and makes me feel like I'm doing the right thing for Ashley. I hope so but I guess time will tell.

Hi Barb G -- Thanks so much for your comment about Lady Gaga's song. It's a great message!

Hi Jill -- I hope my post didn't convey the message that I was putting my son in only mainstream settings. If anything, it's been the opposite in the last few years. I feel there needs to be a balance, and being around people with and without disabilities is very important (I always laugh when I write without disabilities, because to me it simply means without visible disabilities). Are you a parent or a professional?

It is great to have your perspective here! Louise

Hi Sherry -- I don't think there's anything wrong with your response to "What is wrong with her?"!

I will be rooting for Ashley and look forward to hearing about her experiences in the fall.

I think we are always trying to do our best for our kids. xo

(I am not extremely religious nor a rock star follower but I can't help smile when I hear these lyrics by Lady Gaga:) so here they are.....simple but clear: I think we can all appreciate the message
Whether lifes disabilities left you outcast or teased
Rejoice and love your self today
Cause baby you were born this way
I'm beautiful in my way
cause god makes no mistakes
I'm on the right track baby
I was born this way, yeah!

My response if a stranger asks "what is wrong with him?"

a) The asker is genuinely concerned and offering to help. Then I respond with: "Thank you for your concern, but I prefer not to talk about it."

b) The asker is just plain nosy. Then I respond with: "I prefer not to talk about it."

I think it would help Ben to know he learns differently. And his teacher probably needs more detailed information.

Congratulations on bucking the system and getting Ben integrated!