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 happening 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 – 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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Tax Hell (Project 366 – Day 15)

I’m pretty sure I’m one of the most disorganised people on the planet. I seem to function best when I’m in a last-minute panic and “the fear” has set in. “The fear” being the terrifying prospect that I’m going to miss the deadline/bus/wedding. All of my best uni assignments were done at the very last minute and any exam revision I did was done the night before. My method works, I get decent results. But it’s bloody stressful. 

Which brings me to today’s photo, which in itself is stressful to even look at: 

  
My husband owns a shop and I do pretty much all of the admin stuff, including the tedious tax return. In true Me style I’ve left it until the last minute, which means I’m now spending every free minute trying to get it done before the looming deadline.

It’s quite handy in a way though because the deadline is just before my birthday, which usually means my husband is so relieved I’ve done it on time that I get a decent present. Win! Told you my method yields decent results 😁.

When Silence Isn’t Golden

My son is two and a half years old and he doesn’t talk. He doesn’t say mummy, he doesn’t say daddy. He never has. At the moment the only thing he does say is “oh no”.

As a baby he babbled away, giggled and cooed when I expected him to; there was no sign that he would be late talking or that anything was wrong.


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With each day that goes by without him saying anything I get that little bit more worried and that little bit more sad. I’m desperate to have little chats with him; to hear about what he did at nursery; to listen to the nonsense that 2 years olds come out with. I feel like we’re missing out on so much. And I feel guilty. Did I do something wrong? Did I not chat to him enough? Did I chat too much so that he couldn’t get a word in?

Last night I dreamt that he was singing along to ‘heads, shoulders, knees and toes’ whilst doing the actions and I was so so happy in that dream.

Until about 4 months ago I didn’t worry at all. He was so good at other things I just thought he was a late talker and he’d soon be chatting away. But when his 27 month check up came around with the health visitor he was extremely behind when it came to speech and language. That included understanding. He didn’t understand simple instructions. He understands more now (get your shoes, get your cup, etc.) but he’s still very behind. And my fear is that he won’t catch up; that he won’t ever talk normally.

I’m a natural born worrier and when I’m faced with something I don’t know much about I read and I research. Inevitably that means a lot of Internet research, which isn’t always a good thing. So far I’ve convinced myself that my boy has several different disorders (speech apraxia, autism, even brain damage) and occasionally convinced myself that actually he is fine and any day now I’ll hear that word I’m so desperate to hear; mama.

We have a speech therapist involved and my son goes to a really good Montisorri nursery 3 afternoons a week and they’re really trying to help him along too. We follow all the advice given; my sister bought him lots of different flash cards; my brother tries to encourage speech through play with his favourite toys; but so far nothing. And it’s really hard to keep up the enthusiasm when you’re faced with a wall of silence.

My family and some close friends know how much the issue is affecting me as a mum. And I end up explaining it to other people too, for example when a friendly old lady in a shop tries to talk to him. “Sorry, he’s not being rude, it’s just that he doesn’t talk yet, he’s got a speech therapist, I’m sure it won’t be long now, he says ‘oh no’…”. I end up with verbal diarrhoea to compensate for my boy’s lack of speech.

People tell me not to worry because worrying won’t change anything. Well, yes, I know that, but to get my brain to chill out about this I’d probably have to be sedated. When it comes to our kids how can we not worry?

And the biggest worry is that he won’t ever talk properly and he won’t lead a happy life. Everything will be harder for him, he won’t be “normal”. It probably sounds dramatic but I’m being honest and laying out my fears. And I know this might seem like something trivial to be fretting over to another parent whose child has a severe disability for example, and I get that, but for us right now for me this is my biggest worry.

For now I just have to keep encouraging him and keep hoping speech will come. On the one hand I’m told that the earlier the intervention the better the outcome but on the other hand no diagnosis can usually be made before a child is 3. It’s really frustrating not knowing what the problem is but the thought of him being diagnosed and labelled almost has me in tears too.

Sorry for the melancholy post, I just felt the need to share. And maybe someone might read who has some helpful advice. Although if I hear “well Einstein didn’t talk until he was four” one more time I reserve the right to climb the nearest tree and lob apples at people’s heads indiscriminately.

  

Linking with:

A Bit Of Everything

Five Ridiculous Decisions I’ve Made In The Middle Of The Night

 Do any of you have these amazing thoughts in the middle of the night while you’re up feeding the baby or struggling to get to sleep? I don’t know whether it’s boredom or severe sleep deprivation that causes them but I suffer from them badly. Here’s a few recent ones:

1. I’m going to go back to uni to re-train as a doctor. I’ll specialise in paediatric medicine and it’ll be great. (I’m not and it won’t. I’ve got a weak stomach and the sight of blood makes me queasy.)

2. Tomorrow I’m going to go buy some paint and redecorate the living room. I’ll paint over all the crayon drawings on the walls and it will look super. (Not happening. As well as having a 2 year old and a 3 month old to look after and entertain, I’ll be knackered from being awake half the night with the baby and my deluded thoughts.)

3. I’m going to open an Etsy Store and sell lovely bespoke goods, all hand made by clever old me. (Well nope because I’m not actually crafty in the slightest, despite really wishing I was, and I have nothing to offer Etsy other than hard cash when I’m buying stuff other crafty types have made.)

4. I’ll sign up for the London Marathon and  run the whole thing and raise loads of money for charity. (Nice idea and perhaps something to aim for but I should probably at least own a pair of trainers before I set my sights on a marathon. The egg and spoon race would actually be beyond my capabilities right now. No really.)

5. I’ll write a novel. It’ll be semi-autobiographical and hilarious of course. Everyone will want to read about the life and times of Me and I’ll get really famous, probably. I’ll end up having to choose between Graham Norton and Alan Carr because I’ll be so popular I simply won’t have time to appear on both of their shows. (I think the fact I’m blogging about my deluded thoughts is evidence enough that any novel written by me is hardly going to become a best seller.)

Come the morning I explain to my middle-of-the-night self why such decisions are ridiculous and must be reversed, never to be thought of again. So my middle-of-the-night self just keeps coming up with new crazy plans each night. 

Surely I’m not the only one this happens to?!

Linking with:

You Baby Me Mummy

The Fall

My two year old slipped on the stairs last Saturday and was left with a huge carpet burn on his face. I’ve been racked with guilt ever since 😔. 

  
For his age he’s really good at climbing, running and generally storming about being boisterous, so he’s been going up and down the stairs unaided for a while. This was the first mis-hap and because it was on my watch I feel like a massive failure 😭.  

Why do our kids have the ability to make us feel so bad? He’s not doing it on purpose; he doesn’t know he’s doing it. But every time I look at his perfect little face with a massive scabby burn down the middle I feel terrible. Obviously if this had happened to a friend’s child and she was blaming herself I’d tell her to stop being so ridiculous. But I can’t tell myself that for some reason, so I’ll just have to carry on feeling guilty until the scabs fall off. 

Update: the nose scab has fallen off (and is on the loose somewhere in my mum’s house) just leaving the upper lip scab looking like a Charlie Chaplin ‘tache.  

 

Obsessive Nature

My ever loving mother often tells me she’s sure I have Aspergers Syndrome “like her off the Chase”. Whilst I don’t think I do (I’m very social and not intelligent enough for a start) I can’t deny that I have an obsessive nature.

When I become interested in something new it totally dominates and I HAVE to master it/understand it/beat it/constantly read about it/collect it ALL! And I can’t rest until I do! I usually manage to find an enabler who will indulge me, which is nice. They politely listen to me bang on about the current obsession and sometimes I even manage to drag them in too.

  
Right now, it’s 5am and instead of snoozing straight after feeding my baby at 4am, I opened up the WordPress App on my phone, downloaded a tutorial on WordPress, watched a couple of videos from said tutorial and then spent ages working out how to add a profile photo and then choosing one. Clearly, none of this could’ve waited until sunrise!

So it seems that my current obsession is WordPress. But don’t worry, usually what happens is the obsession peters out to become a normal healthy interest after a few weeks. Previous obsessions are varied and include crochet, Liverpool FC (more specifically Fernando Torres), face contouring, Emma Bridgewater pottery and prams. There are others that are just too strange to list and frankly, might be cause for concern if you don’t personally know me.

Oh dear, I’ve made myself sound very odd haven’t I? 😐

IMMA BOUT TO BLOG MY SOCKS OFF! (OR NOT)

I’ve wanted to start a blog for ages. I thought it would be a great way to use my brain again, which is something I haven’t really done much of since I stopped working in mid-2013 to have a bubba. I also thought I could share my (bound to be wonderful) ideas here and maybe vent the odd frustration or two (or two million). Then a little while ago one of my besties started blogging and she’s great at it; I got blog envy and that’s what made me actually take the plunge.

But now I’m here and wondering what the deuce to blog about! I’m sure I’ll get the hang of it and be producing witty must-reads soon enough. But until then, bear with…