Finding Out Your Child Has Learning Disabilities

Things keep happening to me that only happen to other people. I’ve already blogged about my second baby being born with a congenital heart defect and having open heart surgery when he was 2 days old. That happened in July last year. When the doctor first told me, hours after Zaki had been born, I thought to myself ‘this can’t be happeningΒ because I’ve read about this sort of thing but it only happens to other people‘. Well it did happen and we got through it. But I’ll admit that I got through it by the skin of my teeth and almost lost the plot more than once.

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I took Zaki home and genuinely believed that once we were all settled my little family would be in for an easy ride for a while. At least a little while. If not forever. I mean, after something as terrifying and traumatic as that how could the universe possibly heap any more shit on us?

Unfortunately we didn’t qualify for the easy ride and more shit was on its way.

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Within days of being home I started to realise things weren’t quite right with my oldest boy, who was 2 years 1 month old when Zaki was born. I wrote about some of my my concerns that he still wasn’t talking here. Well, he’s now 2 years 9 months and still not talking. He still hasn’t said mama or mummy…

If you read my blog regularly you’ll have realised I’ve been quiet lately. Not just here but on social media too. I’ve been trying to come to terms with the fact that my gorgeous boy, the kid that changed my life and taught me what true love really is, has learning disabilities.

Now I’m coming to terms with it, and I fully understand what it means, it’s actually not as scary as it sounds. But at first I was an absolute wreck. It was all I thought about and I spent every waking moment obsessing about it and what it meant. I cried and cried and cried. Then I cried a bit more. Mostly because I was scared. I had no idea what the future would hold for my sweet, precious, gorgeous, innocent boy. Well I still don’t. And I’m still scared and I still cry. But much, much less now.

He hasn’t had an official diagnosis yet but I’ve had enough dealings with doctors to recognise the warning shots that we’ve been given from them. And I’m switched on enough to realise that he definitely has learning disabilities.

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It all started to become clear when a paediatrician carried out a hearing test on Omar about 3 weeks ago. This was after 12 sessions of speech and language therapy hadn’t really had much effect. The paediatrician told me that Omar was delayed not only with speech and language but also with social and emotional development. That set me off on a crusade of Internet research, which although can be hit and miss, I have to say, did prepare me for what was to come. I read that a delay in 2 areas or more means Gloval Development Delay (GDD). And GDD means learning disability. I still hadn’t really accepted it though. But deep deep down, I knew.

I found an amazing group on Facebook, of parents dealing with similar situations and through that group I found a lovely, supportive beacon of light in the form of another blogger. She prepared me for the emotions I was about to go through. She gave me hope and positivity too. She has been nothing short of amazing. Even though we’ve only messaged online and I haven’t actually met her, I feel like I’ve known her for years. She’s called Janine and she’s great, check out her blog here –Β Unhinged Mummy.

I finally, properly, fully came to terms with reality a few days ago when a private speech pathologist told us that Omar is severely delayed and is operating at a level at least a year younger than his actual age. She predicts that he will talk but not for around another year. Although obviously she can’t guarantee it. I took comfort in that though and I’m praying she’s right.

She used the terms ‘learning disabilities’ and ‘special needs’ and it was hard to digest but once it had been spoken out loud by a professional there was no going back. It was out there and I had to take a deep breath and do what needed to be done to help my boy.

These years are so so important, if gains are to be made, they will mostly be made before a child is 5. I keep hearing that early intervention is the key. He needs as much support as possible as soon as possible. Great! Let’s put it in place. If only it were that easy…

Everything takes so long and services have been ruthlessly cut, meaning there just aren’t enough resources to go round. I’m already fighting and battling to get my son the help he needs and I’m only a few weeks into what it going to be a really long, hard journey. It’s actually so cruel, the way this Tory government is slashing funding for services. Services for the most vulnerable in society. It actually disgusts me, actually physically disgusts me. Anyway, I digress…

 

So back to how it feels when you find out your child has a learning disability. Grief. That’s the overwhelming feeling. Nobody has died but there is a sense of loss. Loss of the child you thought you were going to raise. That’s not to say I love my baby any less, or wish he was someone else. Of course I don’t. I wouldn’t change him for the world and that’s the truth. But I am so,so sad that his life won’t be as easy as I thought it would be. He will have to work so much harder to achieve every milestone and it just all seems so unfair.

Aside from the grief, I also feel a huge amount of pressure to do everything I can to help Omar to develop and also get him the professional support that he needs. I’ve already hounded his health visitor and early years co-ordinater. I’ve contacted pretty much every nursery and pre school in the area and been to look round a few, trying to figure out where he will get the best help. I’ve spoken to professionals who should only really get involved after a diagnosis, just by being pushy and pressing for help. I can almost hear their eyes rolling when they answer the phone and it’s me again, the pushy mum in the early stages of accepting her child has learning disabilities. But I don’t care. I’ll gladly be a pushy, embarrassing mum if it helps my boy.

It’s a lonely situation to be in at first. It feels like everyone else is going in one direction with their kids and I’m going in another direction with mine, to a place unknown. But slowly I have started to realise that Omar is still Omar. Nothing has actually changed, it’s just that now I’m more aware and now I know for sure he’s different to most other kids.

Maybe harder times are yet to come. We don’t yet know the cause of his delays or how much progress he’ll be able to make. Maybe I’ll be a wreck again once he has an official diagnosis, or if his speech doesn’t progress. But for now I’m trying to take each day as it comes and see the positives.

So here we are. One boy with learning disabilities and one boy with a congenital heart defect. It’s not the life I thought we’d have but it’s the only one we’ve got so we’ll live it together and just as before, I’ll be doing everything I can to make sure it’s a happy one for my beautiful boys.

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They F*ck You Up

They fuck you up, your mum and dad.

They may not mean to, but they do.

Yep. Philip Larkin hit the nail on the head with ‘This Be The Verse’. We can all probably attribute some of our issues to our parents and the way they did (or in some cases didn’t) raise us. Even if they did their absolute best Even if they were attentive and doting and as mumsy and dadsy as could be. 

And if we know that our parents messed us up then we have to know that we’re messing our kids up. And we can’t stop because we don’t even know we’re doing it.

But it works the other way too.

They fuck you up, those kids you had.

They make you feel helpless, useless and like you’ve lost control.

And that pretty much sums up how I’ve been feeling for the last ten days. I don’t mean that I haven’t been coping with the general parenting stuff or that I’m tired or my house is a tip. Well yeah, that too. But it’s more serious and it’s got me feeling like absolute crap. To the point that I couldn’t face writing any blog posts or even watching tv. I just wanted to cry and sleep. Sleep brought sweet relief from having to think. 

You might have read about my baby Zaki and his heart. Open heart surgery and a 3 week stint in intensive care saved his life but he so very nearly died and life was hell for a while. Then it got better and I dared to think that we might be in for an easier ride for a while. Because we deserved it after what we’d been through, didn’t we?

I know it doesn’t really work that way but I thought that after something so awful, that was our fair share of crapness done with and there’d be nothing else major coming up. But yeah, it doesn’t work that way.

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I’m not quite ready to explain just yet but there are things going on with my oldest boy that are breaking my heart. I don’t have proper answers yet but what I do know is that we’re going to be in for a tough time of it. Again. And yes, I am feeling sorry for myself because quite frankly, it’s not bloody fair.

I’ve been a total mess but I’m starting to pull myself together now, for his sake, so I can get him the help he needs. I’ve done an awful lot of crying and wallowing though and I’m guessing there’s more to come.

See, this is how our kids fuck us up. They make us vulnerable because anything that hurts them or impacts on them in a negative way, hurts us a million times more. And I’ll be honest, I find it hard to deal with. Especially when everything is totally out of my control and nothing I do will change the outcome.

I’m sure it’s not healthy to love our kids to the extent that we do. For our whole happiness and wellbeing to depend on their happiness and wellbeing just cannot be healthy. And that’s how they fuck us up.

Get out as early as you can,

And don’t have any kids yourself.

Lately I’ve found myself telling people they really ought to consider not having any kids… ‘I mean, if you can live without them, do. Don’t put yourself through it…’ I said.

Now that my kids are here I love them with every fibre of my being, of course. I couldn’t live without them. But if I could stop my currently childless friends going through the pain that they bring, I would. I don’t buy into the ‘oh you need the tough times to appreciate the good times‘ school of thought either. I can do without the tough times. Honestly. They do nothing for me.

Just give me the good times, please. I promise I’ll appreciate them.