Sunday, June 27, 2010

Do you feel self-conscious?

Do you ever feel self-conscious when out and about with your special needs child?

In the lead up to getting Ashlea's first wheelchair, I was very apprehensive about going out in public in it for the first time.  Not because I was in any way embarrassed or ashamed of her, but because I felt like it was such a public 'coming out'.  I felt like it would be like going back to the beginning again and feeling like I had no skin.  Prior to having the wheelchair I was under the illusion (delusion perhaps?) that it was possible that people didn't realise Ashlea had a disability.  I felt like I could duck through the shops fairly anonymously, without too many stares.

But the arrival of the wheelchair meant that it was bloody obvious that my child has a disability.  Someone commented on my blog earlier in the year that something about the age of 4 is hard for parents to cope with.  I agree - and I think it is because it is the age of 'coming out'.  Before that your child just looks like a young child - the differences aren't so obvious.  But when they hit 4 and start going to preschool and getting ready for big school, the differences smack you in the face.

Anyway, back to my original point.  The wheelchair.  I have been surprised at how quickly I have adjusted to being out and about with the wheelchair.  I often don't even think about it - except for the when people stare, but mostly people just smile because Ashlea is so cute with her pigtails and sunglasses as we potter around the shops.

The one time I DO feel self-conscious though, is when I see 'before' friends.  People who knew me before Ashlea, before disability.  All my current friends know our situation.  At the birthday party last weekend, I bumped into a 'before' friend.  I haven't seen her much since the girls were born (due to circumstance - nothing deliberate).  Then I saw her a year ago and she asked how the girls were going and when I said they were really good she asked:

So, they're both walking now?

Um.  No.

It's kind of shocking to tell people that your child can't walk.  And they probably never will.  Not many places for the conversation to go after that clanger.

Anyway, I felt self-conscious seeing her on the weekend.  Not because she made me uncomfortable in anyway (the opposite in fact), it was just that it reminded me of how confronting it can be to see a child in a wheelchair.  Of how confronted I still am by the fact that my child is the one in the chair.  There is no denying that Ashlea can't walk when she is out and about in her chair.  The thing is that the denial doesn't belong to anyone else but me!  I can't deny that I have a child with a disability as I carry her to her wheelchair.  I can't deny how different my life is now.  I can't help but think back to life before.  Before disabiltiy and wheelchairs and heartache.


Beth said...

My 2 1/2 yr old daughter has Down syndrome - it's definitely noticeable - well, maybe only to me most days. I hate going places because people always ask HER: "whats your name?" "How old are you?". She has a few words, again, only I can understand, but she wont say or sign her name or age when asked.

She walks differently than other kids, and her head and shoulders look a little funny. I dont like when my sister puts Laurens hair in a ponytail, cuz then you really see the back of her neck and how different it is.

I'm sorry for venting this on you - I haven't even told my husband this.

Your girls are beautiful, by the way.

My 11 month old can do more at 11 months than Lauren could at 18 months. It hurts me to see that and I feel so guilty to compare them, but I do.

T said...

I don't know if it helps, but from a carers perspective when I take the kids out in wheelchairs from the camps - I feel so proud!! Prouder than I would with a neurotypic child :)

Alison said...

Thanks T - I too feel so proud of Ashlea. Maybe that is where some of the grief comes from as a parent - I am so proud of her, but when we are out in public there are a lot of people who just see what she can't do, rather than what she can.

Beth - It's so hard to see your child obviously developing differently than their peers and especially their siblings. I think over time it definitely gets easier - grief becomes a more occasional visitor rather than a constant companion.

Sarah said...

Yes I do aswell and Violet is only in a disability stroller at the moment.

I think the age of 'coming out' is very true.

Anna said...

I don't think I have ever minded the wheelchair thing. I have always been quite proud.
And when I am out and about with Ryley and he has his Specialist School jumper on, he gets far more nods and smiles than if he doesn't, which makes me feel a bit better.

But I do feel a cringe whenever I come across someone from 'before'. I guess I half expect them to call Ryley a 'retard' and that always puts me on edge.
Somedays you just don't want to have face someone's reaction.

Adoption of Jane said...

I think your right about the age thing. I think now that my baby is 3 1/2 people are really shocked when they talk to him and he babbles. I think the more we get out there the better it will be. Or maybe the more we won't care.

n0thingbuteverything said...

I remember when we first went out with S and his kaye walker. In fact, even before that I remember asking his physio if it was 'OK' for me to take him out using it. I am still not quite sure what I meant by the question, but I think it was part of this same 'coming out' biz. Now, I forget that a 5 year old who uses a walking frame isn't the norm and I must have just made myself oblivious to stares and points because I am sure they are there, but I just don't see them. I DO however always hear kids commenting on it. 'What's that for?' is the most common question. I think the reason I zone in on the questions is because I am always curious to hear the answer from the parents. I'd say, on a positive note, that 9/10 parents get the answer right (i.e 'it helps him walk'). 1/10 will totally screw up by telling their child to SSHHHHH as they push them away or say something inappropriate. All part of the journey I say :-). At least life isn't dull.

ferfischer said...

I know what you mean about "before" people. I have this too. Our life is TOTALLY different than before. When I see a "before" person, I have a lot of trouble, and I usually end up crying. But then, after that, I'm ok. Then the before person becomes an after person, but the first time is always hard, and I have to tell the story over and over. Well, that and the "prognosis" question. It's especially overwhelming to "before" people when they see us with my crew, and they feel totally overwhelmed with what they see and all the equipment, and the other two kids running wild, that it's hard to even spit the story out. Anyway, yes I feel self-conscious - although we still get the "oh she's sleeping" comment sometimes when I'm holding her and she's floppy.

Amanda Daybyday said...

Gosh, it's so true. We fed my daughter with an NG tube for a little over a year. I struggled going out in public with her because of the looks she'd get from other people. And now at 3 1/2, people are starting to talk to her and she has no words to respond. I hate the question, "how old is she?" Hate it. Cuz she looks and acts like she's 2 - if that. What do you say to that? Well, she's 3, but she's developmentally delayed, so...

Anyways, you've got a real point about the coming out. I get it.

I get the coming out part. It's coming for me as she gets older