C was definitely one letter that conjured up a lot of words for me…
Carer, Condition, Chromosome, Crisis, Clinical Negligence (OK that’s two words).
I even started about cats, because without the comfort mine has given me I wouldn’t be writing this at all.
I’d like to be brave enough to write a post on class and disability, because I have a theory on that, but this early into my blogging life I think I’ll leave that one for another time.
You've been sucked into a green eyed battle of weighing up the needs and abilities of another ‘special child’ over that of your own.
For me as a first time mum, this incredibly self destructing practice happened early on and actually wasn’t really my fault.
Despite an early diagnosis (when my daughter was a couple of weeks old) I forged on with attending ‘mainstream’ mother and baby groups run by our local health visitors.
To start with the rest of the mums were all in pretty much the same state of mild shock that babies don’t come with a guidebook and that they sleep for shorter periods that we’d all been lead to believe.
A month in however and these meetings took a turn for the worse.
The health visitor asked us each week to introduce ourselves and our babies and now also insisted that we name one new development our child had made the previous week.
If this in itself didn’t raise the checkered flag to competition then by the time the third or fourth ‘update’ had been given, you could feel the tension in the room growing.
Lucy was, and still is, severely delayed. In fact we weren’t able to report many of those early milestones until most of that group of babies were starting nursery and their mums were on to having their next one.
Call me stubborn, but I started to make things up.
By week 8 Lucy was “showing clear promise at the piano” and similar talents.
I got sick of the boastful remarks the other mums made, as if they themselves had had the simple achievement of blowing raspberries (which believe me took all my mental strength not to do in those meetings).
At six weeks old, Lucy was also diagnosed with hip dysplasia and put into a Pavlik harness 24 hours a day.
This changes the position of the legs to keep the hips in place, it also makes the baby look like a spatchcock chicken.
My beautiful baby was wearing a contraption which looked so alien and uncomfortable and nothing like the pictures of babies in the Mothercare catalogue.
I gave up the comparing thing with ‘normal’, healthy, non disabled babies from there on in.
At about 6 months, the developmental gap was marching ahead and as bitter as I was about it, I knew when to quit.
I then hit a new all time low, comparing Lucy to other special needs children, and started to quietly obsess that if so and so was walking, talking, eating etc by a certain age, that gave us hope.
Only it didn’t.
Comparing two children even with the same disability is futile.
Up until this point I genuinely believed that all people with Down Syndrome were similarly affected. How wrong I was.
It also didn’t make any difference what so ever to Lucy’s prognosis.
Yes it makes it harder that she has a unique condition, she is in effect a SWAN (Syndrome without a name).
I have tracked down one family with an adopted daughter in America with nearly the same unbalanced translocation.
The instant relief I felt in not feeling completely alone was soon overtaken by that niggling comparison, which really is like an itch I’m not able to reach to scratch.
Then a close friend of mine (also a special needs mum) put me straight one day.
I had praised (and envied) her daughter for starting to walk and she firmly said to me “It’s not a competition”.
I was taken a back a little, it’s all very well to say this when your kid is winning the competition. But after a while I came to agree.
Our kids are not on the same playing field as each other they therefore cannot compete or be measured by the same set of standards.
Take the pressure off of yourself and give your brain a rest.
You deserve to be allowed to see your kid for who they are without comparing them to who they could have being if things were different.
They also deserve to be appreciated for who they are now, not what they might or might not be able to do in the future.
Love in the end is the most important need and ability.
Loving someone for who they are really is the most any parent can strive for, and is something some parents of non disabled kids fall short of every day.
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