Small boy looking puzzled: "Mammy, who's in that buggy?"
Mammy: "Well, there's small babies and big babies, and that's a big baby."
I was completely speechless, and just glared at her. I guess that was a bit unfair as she probably did not know what to say to her son. Often small children - especially girls - will wander over to Smiley and ask about her. I tell them that she was born too soon and hasn't learned to walk or talk yet. "Will she ever?" they usually ask. "I don't know, I hope so," I usually reply.
Part of the problem is her (adult-sized) buggy. Most 13 year olds are in wheelchairs, but for us that would mean staying indoors whenever it is wet or cold - as in about 11 months of a typical Irish year. If we only got out on sunny days, you'd have to cart us all off to the funny farm. I found Smiley's wonderful "Bug" buggy on the net and it has everything: playtray, rainhood, footmuff and shopping net - it's fabulous, but confuses onlookers who just see a very large (baby's?) buggy.
Since I was in town to buy Smiley a spring coat, I decided she needed a new look: one that says teenager, not tot. So we did the rounds of the clothes shops and I discovered that she now likes trying clothes on - not so different really from any other teen really:
We ended up totally on-trend with a couple of over-sized hoodies, and leggings in black and denim. So what now - how do you provide a typical teenage experience for a girl with severe physical and intellectual disabilities? Should I consider a little eye-brow reshaping, perhaps a dusting of mascara? And when the transformation is complete, should she be going to discos, perhaps for teens with special needs? It's yet another problem to consider, but I've no answers at the moment.
Smiley is such a special young girl who is growing into a very special young woman. Let her personality shine through and guide you rather than worry about the perceptions of others who do not know her. Everytime I see a picture of her she has such a huge smile on her face and she seems truly happy. If she wants more I am sure she will find a way to let you know. xx
ReplyDeleteThat photograph is fabulous and now I know why you call her Smiley:) Her name says it all and when you reach the time for those issues you will find the answer too. Jen.
ReplyDeleteSmiley is such a joy. The fact that she loves Britney Spears videos says it all - definitely a teen my dear! Just as she communicated to you she likes trying on the clothes, as her mother you inherently know when she is happy, when she is sad, therefore trust in your own instincts - you will know when is the right time to introduce new things to Smiley!
ReplyDeleteThat's a really tough question and without meeting Smiley I wouldn't know but I have to admit that when I've seen other children with disabilities that are dressed like their parents that makes me sad. I hope you know what to decide when the time is right.
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As has already been said, your daughter's personality will guide you. My daughter has gone from being happy dressed like a much younger child to suddenly having a meltdown about handbags and jeans!!! Now we have to contend with being in love this week! She may be a bit late to all this fashion malarkey compared to her 'normal' peers but 'normal' is over rated!!!!
ReplyDeletesmiley is so smiley! she is beautiful! i bet that she knows what she wants and knows how to get it too... she'll guide you, i know she will. the transition between seeing eilidh as a baby and a toddler has been hard for me - her needs are those of a baby but she can back chat and throw a tantrum like a toddler - i can't imagine what the move from child to teen is going to be like... thanks for sharing this post
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Ooops it looks as though I never got around to replying yo the original comments on this post, so just to say many thanks to @Helen, @Jen, @Irish Mammy and Chic Mama.
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@Jontybabe - yes my dd loves handbags too x
@ ever hopeful mammy - yes it is very strange having a teenager who loves clothes shopping but still watches the Tweenies!
H isn't quite two yet but is still functioning at about a 6 week old.I am very (perhaps overly) aware that he is technically a toddler and go to great lengths to make sure his brother Cheeky doesn't refer to him as a baby. Part of this is also making cheeky aware that H's lack of speech and inability to walk isn't because he is a baby and will grow out of it. I also make sure he wears bandana bibs instead of baby bibs for that same reason. So I can imagine your shock in penneys, but you're right- the other mum might just not have known what to say. Smiley is such a lovely smiley girl/ teenager. I love the photos you share of her. X x
ReplyDelete@LittleMamma - So glad you like the photos, and like you, I don't use baby bibs xx
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ReplyDeletehelpful. Keep on posting!
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