This YouTube video made by a mum of a child with CP is so beautiful, so poignant and so very close to home in many ways for me. It deserves to be shared, and hopefully watched by many. What an amazing little guy in the video. He and his mum are stars.
I feel I am particularly well adjusted to having two so called children with ‘special needs’ . It’s a pretty rare day where I find myself getting glum or feeling the whole ‘why me’ thing. Cup half full girl that I am, I honestly find I am mostly drawn to the positives – the fact that both of them are doing so well, the fact they are such lovely kids and the fact that we have been very lucky in so many ways and have had so few setbacks.
But, when it comes to eczema – which all 3 of the boys suffer from terribly – I am beyond frustration. I feel silly that it’s itchy skin that gets me so upset and makes me feel stressed. I feel embarrassed and even a little ashamed to admit how sorry for myself I feel about dealing with it- especially when I know so many other families who deal with such significantly more burdensome issues.
And for those families (you know who you are), I apologise for making such a big deal about this and believe me, I do know that in the bigger picture, we are so lucky, so very very lucky that this is the biggest drama we’re facing right now.
But the thing is, it just ISN’T fair that in addition to all the other issues my boys are faced with, they also have to contend with itchy skin that wakes them all night long, causes constant discomfort and requires frequent medication and treatment.
Much more than that though, it isn’t fair that doctors, honestly, have no idea how to help. Sure, they can prescribe creams and the odd blood test and tell us to bathe them in bleach baths (highly diluted), dress them in cotton clothes, keep the heater down low, watch what they eat, don’t touch animals, don’t play in sandpits, sleep under blankets rather than doonas, get rid of carpet, vaccuum regularly, avoid dust, try this cream, no that cream, no this cream, take this antibiotic, use this antihistamine – and I could go on and on and on.
We’ve spent more money than I care to remember over the past 5 years on eczema treatments, creams, medications, naturopaths, private dermatologists, skin prick testing etc etc. not to mention the money it costs to modify their diet and buy ‘safe’ food for them to eat.
But still, they wake with itchy, red, uncomfortable skin.
I honestly take advice from anyone and I am willing to try anything. Anything.
Because if the boys don’t sleep well, then neither do we. My husband and I argue over what we fed them, which cream we used on them, who’s going to get up and comfort them etc. We all end up sleep deprived and even more grumpy. S can’t study well at school, M misses out on playing with his new best friend in the kinder sandpit and I get phone calls from school, kinder, childcare asking me if I should come pick them up because they scratching and uncomfortable. It’s not fair on them or on any of us
Over this last fortnight, we have spent close to $700 on a new naturopath, new blood test and new supplements for S – whose skin is by far the worst of the boys at the moment.
As a result, he’s going to start on a severely restricted diet as we try to remove some possible food sensitivities from his diet in the hope it will allow his body to stop attacking his skin.
I know some people think naturopaths are quacks, but I am not one of them. I have a lot of faith in a GOOD naturopath and I am keeping all fingers, toes, eyes and ears crossed that THIS TIME we’ve got an answer that is finally going to allow us to all get some sleep.
When M started 4 y/old kinder this year, I talked to him about it being his ‘first’ year of doing it. He was that far away from being ready from school that I couldn’t even begin to imagine that we wouldn’t be spending two years there.
How much can change in a few months!
Last week I had a meeting with his kinder teacher. She talked in glowing terms about his ability to join in with his peers, his good behaviour (ha, wish we saw more of that at home :-)), his manners, his kindness, his engagement in the kinder program and the fact that, in her words, he didn’t at all ‘stand out’ as being in any ways behind the other kinder kids.
And he has a friend! A real friend, who takes his hand and chooses to play with him, who has drawn many pictures of him to take home, and who told me, when I was dropping M off at kinder last week, “M is my very very best friend”.
Thrilled is too mild a word to tell you how happy, and proud that all makes me feel.
Of course though, I wasn’t that shocked. We’ve been watching him develop at an amazing rate, making great gains in almost every front. He’s become more mature, more engaged, more creative, more vocal, less angry…
Yes, behaviour wise we still have a long way to go at home, but it’s brilliant to know that out in the world, he recognises and follows the rules and more than one person who knows him socially have expressed shock that he could ever throw the mind numbing tantrums that we see at home (and the bite marks on his brothers don’t even seem to convince them….).
We’re starting to see a psychologist next month to help work on his behaviour management at home, where it’s clear we need to help him self regulate that behaviour and be as much of a team player at home as he is elsewhere.
M is a gorgeous, fun, exciting and fascinating little fella. I am so looking forward to hearing the psychology behind why he finds it so easy to keep control at kinder but so easy to lose it at home. I had to raise my eyebrows pretty high when his kinder teacher told me that the biggest area he needs to work on is asserting himself with his peers because he lets them boss him around and will back away rather than standing up for himself when he should.
Most of all, I am looking forward to seeing my little guy start school next year. I am so excited for him and exceptionally proud of him for how far he has come. The diagnosis of autism has been in fact nothing but a positive for us, allowing us to look at him a different way, accept who he is and help him grow into a strong, independent and HAPPY boy. Thank goodness also for the early intervention funding that has come along with the diagnosis. What a blessing to not have to stress about finding funds to access the support and services that he needs. It’s a shame it only goes to age 7, but it’s so great for us for now.
This is the beautiful mothers day present he made for me at kinder yesterday. Love love love. And feeling very confident about the future.
Happy mothers day to all the mums out there