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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The Dangers of Boris Johnson

The debate about whether or not Britain should leave the EU (or Brexit, if you want to be cringey about it) has got me seriously considering whether it’s really in our best interests to allow everyone over the age of 18 to vote on the matter.

Most people I know seem woefully ill-equipped to cast a vote on an issue that will have huge social, political and economic ramifications. They know next to nothing about politics and even less about the European Union and what membership of it involves. In the coming months some of them will read around the subject, consider the pro arguments, consider the con arguments and then come to an informed decision. Some of them won’t bother. But most will still vote.

They will be swayed by the media. Be it the Guardian, Loose Women or even Facebook. And they will be influenced by the politicians and celebrities wading into the debate with their passionate and compelling arguments as to why Britain will thrive and all but take over the world if we exit the EU. Or wither away and probably sink into the sea if we dare to go it alone, depending on which camp they are in.

Which brings me to Boris Johnson. Just after he’d made his statement announcing that he would be backing the exit campaign a friend of mine who has very little interest in anything political said to me, ‘I bloomin’ LOVE Boris Johnson’. Yes. LOVE. Usually a politician counts themselves lucky if they are tolerated. Then on Friday night whilst watching Gogglebox I was aghast to hear the hilarious, orange one say the same thing! She loves Boris too. And what’s worse – she trusts him!

I am certain no other politician could compel my friend or the hilarious orange one from Gogglebox to declare feelings of love. Only Boris.

 

Boris Johnson © Wikipedia Creative Commons

 

Good old Boris. Or Bojo, if you prefer. Seemingly bumbling through life on his trusty bicycle, his hair flapping in the wind as he rides through London amongst the people that elected him to be their mayor. Most of whom he should probably have offended one way or another over the years, with his pro-hunting, anti-gay marriage, racist, elitist ramblings.

Except the man seems to be unable to offend because with hair that ridiculous how can anything he says be taken seriously anyway? But it is serious. Politics is serious. The decision on whether or not Britian should be in the EU is serious. And Boris isn’t actually bumbling through life at all. He’s just trying to make it appear that way. It’s part of his brand.

His brand that has become so popular it’s almost as if he is exempt from the standards by which all other politicians are judged. He has shown disdain for homosexuals, for black people, for working class people, for Muslims -basically for anyone that isn’t the same as him – and yet he was still elected to be London Mayor. How the hell did that happen? 

It happened because for some reason, people seem to think that when Boris is bigoted or prejudiced it’s just because he’s quirky. He is just making a stand against that old chestnut ‘political correctness gone mad’.

He’s just being honest.

He’s just saying what he really thinks.

That should be applauded shouldn’t it?

Oh wait, what he really thinks is racist?

Well, it’s just Boris, he doesn’t mean any harm.

Look at his hair! Ha ha ha!

But he is causing harm. Boris wrote that he was scared when he came across groups of black youths in parks and that racism was ‘natural’. Exactly what message was that giving out to society? That we should judge people based on the content of their character? No. That it is ok to judge people based on the colour of their skin. Because that’s what Boris Johnson does.

Owen Jones hit the nail on the head when he said “At the moment if Boris Johnson ran naked smothered in honey down Whitehall – people would go LOL Boris Johnson what a legend”. Utterly disturbing imagery, I know (why honey, Owen? So sticky…) but he’s right.

Boris tapped into a gap in the market for ridiculous, humorous, unkempt looking politicians and ran with it, appearing on programmes like Have I Got News For You and the Jonathan Ross Show to cement his ‘hey, I’m just here to have a laugh’ image and simultaneously peddle his ridiculous views. He actually said that bicycle helmets make no difference to cyclists if they are involved in road traffic accidents on one of those shows. What an idiotic thing to say. Why would he say that? Because it was of benefit to his career, that’s why. The man’s a self-serving imbecile. But a self-serving imbecile with a following.

And I admit, it’s often hard not to smile at some of his more trivial utterances and his posh, cheeky chappy sound-bites. But that’s all they are. Sound-bites. To reel us in.

He has cultivated this image of a say-it-how-it-is, no nonsense, loveable fool and gained a huge following of people who know next to nothing about politics but will vote for Boris because ‘he’s a legend’. They like him. They trust him. And now they will vote to leave the EU because he says we should.  And that is dangerous. Not least because Boris’ reasons for believing Britain should leave the EU seem to be unclear and are probably motivated by his own political ambitions.

Of course Boris isn’t the only high profile figure campaigning in this debate, but he is the most dangerous in my opinion. His title of politician affords him an automatic gravitas that he doesn’t deserve. He’s seen as a “legend” in today’s overused sense of the word, yes, but also an elected MP, so he must know what he’s talking about, right?

Even if he does (which I doubt) what makes people so willing to believe he has their best interests at heart? Why do they trust him? It’s no surprise that Boris ended up in politics. Yet another self-entitled, ex- Etonian, ex- Bullingdon Club, elitist to grace the Tory Party.

Usually such figures (and there are plenty to choose from) just don’t appeal to the average voter and why should they? They’re from another world. But Boris’ apparent likeability (which quite honestly, I can’t fathom) somehow masks all of the characteristics many would usually find pretty loathsome and gives him the added bonus of seeming trustworthy.

I don’t believe Boris has a clue what’s best for Britain in terms of the EU, or most other issues for that matter. That’s not to say he is stupid. To create and promote ‘Brand Boris’ took intelligence and guile and it has paid off. But even if we give him the benefit of the doubt and assume he has got a clue, let’s not be fooled into thinking that he cares about anything other than his own career or that he had the interests of the Great British public in mind when he announced that he would be standing firmly in the exit camp.

And it’s all such a shame for democracy. Yes, I understand that we should all have a say. No, I don’t have a better system to present to you. But can we really be totally comfortable knowing that there are potentially millions of people who know nothing at all about the EU and will be voting on Britain’s future based on the fact that they like Boris and his hair? So far it seems that his statement has made no difference to the polls but one eccentric, well publicised outburst from Boris and all that could change.

Just because you like Boris (and his hair) doesn’t mean he likes you. Or cares about you. He only cares about himself and people just like him. He’s fooling you.

And that’s why he’s so dangerous.

Valentine Bore

  
Am I the only one not feeling the Valentine vibe? I don’t know why but I just can’t get into it. And I usually love an occasion. Any occasion will do – Pancake Day, Halloween, Eid, Christmas – I really get carried away and go to town on the celebrating. I LOVE the seasonal aisle in the supermarket, I love buying tat that will only be used for one day. I love it! I’m a brilliant example of a consumer. I fall for every cheesy advert going. 

But Valentines Day just fails to enthuse me. My Instagram feed tonight is full of photos of couples having romantic meals together and gushing captions about “forever Valentines” and “he still looks at me like he did when we first met”. I can’t get on board. It just makes me cringe. 

  
I was in Tesco on Friday, I saw the cards and what not and just couldn’t be bothered to have a look and choose one to give to my husband. I had even less inclination to think of a gift to get for him. For once I’m actually hoping he hasn’t bothered to get me a card or present either. (The chances of my hopes coming to fruition are very good.)

I briefly, for a split second, considered making one of those voucher books for him today so that I could whip it out on the off chance he does present me with a gift. You know the type of thing – ‘IOU breakfast in bed’, ‘IOU [insert an activity you really don’t want to do but occasionally feel you have to out of a sense of duty]’. Needless to say I thought better of it and ditched the idea. 

Am I just a hardened old hag who’s lost all of her sense of romance?! I really can’t work out why I’m not scattering rose petals about the place and demanding we exchange cards and presents whilst taking Instagram friendly photos. It’s a mystery.