Parenting special needs kids: things I’ve learnt

So Saturday saw me taking Jasper to the birthday party of one of his kindy classmates. MAN it has been quite some time since I’ve hung out at a 5 year old birthday party and whoooeeee they are as fullonathon as I remember them.

In Jasper’s class there is a little boy, J, who has special needs. I thought that perhaps it was albinism with learning difficulties but have since found out he has Prader-Willi Syndrome. But this is all a mute point. The kid has special needs. He’s in a mainstream pre-school setting at a community pre-school with huge longstanding credentials in inclusive teaching practice. But again, that is by the by.

For you see, I got to meet his Mum and well, it was like a little window into my soul. I’m not going to say this woman was me eight years ago when I too had my special little guy in an awesome pre-school and a firecracker of his brother killing me not-so-softly but there was so much in her that I remember from all those years ago.
There she was, gently but firmly trying to wrestle J from his place beside the trestle table laden with food. Coaxing him to join in with the other kids. Threatening him with leaving, moving bowls of lollies away, covering food with serviettes all the while doing the same with his little sister who was fiercely determined to work her way through the entire contents of the table with the only thing stopping her being her mother and/or Grover who basically had taken one look at the spread and set himself a similar goal.
Eight years ago I would have been doing the same thing. Guiding Oscar to join in with the others. Firmly yet calmly trying to call a halt to the inhalation of foods laden with sugar, salt, thickeners, colours and all those other things that are going to KILL US ALL. Trying to manage the subsequent meltdown all while presenting an incredibly together, in control, competent front to the rest of the adults present.
But dudes, I wasn’t fooled for a minute. That facade is so fucking fragile. It takes one thing. One little incidental comment from some old biddy in the supermarket, something totally well-intentioned from a family member, feedback from a staff member and BAM it all comes crumbling down.
I wanted to say to her, ‘go! Go and have a coffee or wander the shops or just go and sit in your car listening to the radio! He is fine, I’ll watch him and his little sister too! GO!’ But I figured seeing as I’d known her for a sum total of three minutes perhaps that was not appropriate and/or she would totally think I was a loon. I mean, maybe she has got it all together, maybe she actually does have it all in control, but those behaviours so said otherwise.
For you see, in my experience, when you have a child with significant special needs there are some key ages that act as milestones for you as much as for your child. At around the age 3 or 4 you hit a wall. It’s a therapy wall, an energy wall, a realisation wall.
There are HUGE pressures put on parents of special needs kids in the 0-5 age bracket both real and perceived. ALL the literature says the more early intervention you do the “better” (ie less disabled) your child is going to be. Now just re-read that sentence, imagining it is your child and ask yourself, ‘if someone said to me, that what I do with him/her between 0-5 will totally determine if their future is one of promise and success or one of hopelessness and failure, how would I react?’.
You’d react with one – maybe TWO! – speech therapists, a physio, an occupational therapist, you’d be in a swimming class, probably some sort of kinder-gym program and then also be accessing an early intervention service. You’ll spend inordinate hours on the internet investigating the latest snake-oil salesman offering magical cures and while your brain says ‘get real’ your heart says, ‘what if’. You’ll try every alternate therapy there is and implement the most ridiculous diets and regimes humanly conceived.
Now, work out how to fit all those various appointments into a week, then work out how you’re going to pay for it, then allocate all the time at home to be doing everything all those therapists are telling you to do at home and there you have a very robust drinking habit with an equally comprehensive eating disorder and hell let’s just admit it, some serious mental health issues.
Forget how the kid feels.

Maintain that for a couple of years.

So you hit 3 or 4 years of age and suddenly your happy, goofy, compliant little man gets to the threshold of the speech therapist’s room, utters the one sound he can utter on request and refuses to budge, screaming blue bloody murder if you so much as try to coax him into that room.

And you have hit the wall.

I could see it in front of me in this woman. This mother doing everything right. Everything expected of her plus more. And I could just see it in her eyes, that if someone had given her a hug and said, ‘it really really sucks and it doesn’t get any better but you just get used to it and that is totally OK‘ the facade would have fallen. Perhaps not then and there, maybe in the car on the drive home or maybe later that night when she finally got some time to herself.

Because dudes, those early years are so goddamn scary, and lonely and isolating and overwhelming and man, did I mention scary?

And through all of that I realised something. I realised that I’m not that woman any more. That I have grown, changed, softened AND hardened.

So what? What would I have been like if I knew then what I knew now?
– I would have let Oscar hang at that food table because to him, that was being at the party. That was being a part of it. That was fun. *

And that is totally OK.

– I would have let Felix eat his way through that table because you know what, it’s two hours of one day of one weekend in one week in one month of one year. OH sure, there would be more birthday parties and sometimes even more than one a weekend but you know what? Reread that first sentence.

And that is totally OK.

– I would have let them be and gas-bagged with the other mums.

And that is totally OK.

It all sounds so simply doesn’t it, so, nothing. But man, it is everything.

I still have to work at it but I now know that my definition of inclusion, my definition of fun, my definition of anything is different to that of Oscar. I have learnt to look to him for how I need to react – is he happy? is he safe? is he involved in a way that he is comfortable? – then either let it be or intervene.

Do you know how fucking liberating that is? Oh sure, there are times it feels like free-falling but man, the load that is gone from my shoulders.

Take footy training yesterday. The first for the season. Oscar sat on the sidelines for a while (Felix is the one playing) and then off he went to the side of the coach. He got a ball. He occasionally joined in but otherwise just hung by the coach. Totally in.his.element. Happy.  Yes, I have moments of worrying he’s being a pain in the arse for the coach but I have that quiet word with him later that if that is ever the case just send him back to me. It has never ever happened.

Take Felix’s cricket training this afternoon? Again, Oscar watched for a while and then he had a bowl and joined in the drills they did later. None of the boys care/stare. None of the coaches mind one jot. And there’s Oscar – happy and involved in a way that suits him.

It has taken me a long time to reach this point. To not hover, to not make excuses, to not be apologetic. Let him be.

Oscar's first day of high school, February 2011.

It’s so easy to say it now. At four I wanted him desperately to be in there running with the pack, to be doing anything age appropriate. And that is totally understandable. J’s mum is on her own journey. I just wanted her to know she is not alone.

* In this mum’s defence (although that is not the right word) I am aware of the very real issues associated with Prader-Willi Syndrome and diet/eating etc and that adds an extra layer to her management in this regard. Absolutely.

 

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  • kim at allconsuming

    And well done if you got to then end of that diatribe!

  • Alex

    Kim, you write amazingly well. Your eloquence and ability to describe the emotional and visual of the situation is stunning.

    I love that you are in a space where your mantra is 'that is totally ok' is great. Yoda has nothing on you!

    :o)

    Thanks for sharing that. I get so hung up on the details of life with 2 kids that I lose the big picture. Thanks for reminding me.

  • Eleanor

    Alex is 100% right. The combination of your sensitivity, honesty and eloquence is a GIFT. It's a gift you've been given and a gift you pass on to your readers.

  • Paola

    What you said, how you said it.
    God I wish I were like you. Where you are. Able to understand and give.

  • fifi

    I suppose its a good thing to cry this early in the morning as it cleans my eyeballs out.

    Legend.
    And I think I recognise the scenario with the party table, and my daughter didnt have special needs. I wish I had been able to say to myself "its all ok"

  • trash

    I'm with Fifi. I think what you have said here in this post is applicable to all parents. Let the children just be who they are. Watch as necessary, lead where appropriate and accept who they are.

    Thanks for sharing your view.

  • sooz

    And aside from all the general awesomeness that is you, I'd like to add that having met Oscar, it's really evident in him that whatever you are doing is right! Just look at how Amy related to him. Complete stranger, BOY, not like the kids she knows and not once did she bat an eye or feel or act weird or keep her distance. You have focused on the right stuff – the being a part of the bigger picture. I totally salute you.

  • Anonymous

    Kim, my 12 year old has different special needs to your boy, but aside from 1 extra boy in the mix ( I have 3 & I gather they are similar ages to yours) – i am at the same stage you are. Holidays with other people are a nightmare, which we try to avoid, but other than that, we have learnt to let go, and let our boy be himself & enjoy himself his way, which may be filming the other kids playing sport, rather than actually playing – he isn't interested, and it isn't worth the heartache for us! But, this realisation, is something that comes with development (yours & theirs!) and having great people around you, who are accepting & willing to help out sometimes. Good luck on your high school journey, we have just had an interview for our chosen school,, so fingers crossed. Siobhan/Shivi1.

  • Kill

    I remember at my engagement party, you with Oscar a babe in arms, and B looking at you in the same way – her heart was breaking for you because she knew something about the journey you had ahead. You are surviving, learning, coping, growing and can now see how far you've come – this in itself is a victory you can celebrate. It's been OK, is OK, will be OK

  • Duyvken

    You're a star, dear Kim, a brightly shining star!

  • blackbird

    You've said this all so beautifully and your grace shines through in it.
    What makes you brilliant is that you didn't try to advise/comfort/encourage her.
    What makes you wonderful is that you know she will come through to where you stand now and it's all part of the journey.
    Oscar is lucky – and so are you.
    Lucky AND smart.

  • Suse

    That is such a huge thing, to learn to let your child be.

    I struggled with it for years with my eldest (who doesn't have special needs but is definitely slightly … odd).

    I salute you too.

    Yadza!

  • Badger

    Dude. You are wise beyond your years, you know.

    I was JUST coming to this place with my boy child when the teenager hormones kicked in and threw me for a loop. EVERYTHING out the window, back to square one.

    So now I am trying to work my way BACK to that place, now that letting him be involves entirely different stuff than it used to. Gah.

    But anyway, yes. You are correct. And brilliant.

  • Jennifer

    Yes. Yes. and more Yes.

    Beautifully said. Thank you for doing so.

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  • This post is brilliant, thank you. So wise and beautiful and enlightening.
    Melita recently posted..Queenager with a Cause

  • Ada

    Your post made me cry…thanks, I needed to hear it because my special needs three year old is driving me crazy!

  • THANK YOU! I was in the middle of a twenty-four hour meltdown – even having a rant on my blog didn’t seem to help this time – when I found your post and now I feel a lot better.
    My journey has been different, having a boy born too early, but the feeling right now is similar.
    Thank you again x

    • Every single story is different but there is a commonality in the human condition that makes us find each other, to know we are not alone, not the only ones struggling, that there are other people who ‘get’ it. And while it will never be alright it will be a bit less raw, hard and horrible. You will, once more, grow comfortable in your own skin and the bad days will become further and further apart. But know this, you are not alone.

      • Tamara

        Thank you. My special needs child is 5 and I am a year past that mother – asking not why? but how? You have answered my question! Thank you xxx