He Said Mummy!

Yep. My boy said mummy. Today he just decided was the day and he said ‘hello mummy’ and then he kept saying mummy alllllll day. And it was beautiful. 


He’s 3 years 1 month and 24 days old. I’ve waited a loooong time to hear the word ‘mummy’ come out of his gorgeous chubby little mouth. It was worth the wait. 

When I first found out for sure that Omar had a speech delay I blogged about how worried I was that he wasn’t talking and how desperate I was to have little chats with him. It’s hard to convey to people how much a ‘speech delay’ affects almost everything. It doesn’t sound serious but in reality it is. It’s not just that Omar is a late talker, his understanding is delayed too. There have been times that I’ve despaired that he would never talk, never understand, never say mummy. And while he’s still very delayed I can see that he has made progress and he’s trying and that’s all I ask of him. 


I will confess something I’m not proud of – I’ve been scared that Zaki would say mummy before Omar. I’ve been hoping it wouldn’t happen. I can’t lie, it would hurt to see his younger brother by 2 years ‘overtake’ him. But now Omar has said it I can happily work on Zaki saying it too. 


There have been some really dark days over the past 12 months as I’ve come to terms with Omar’s problems but today has been a great day. Whatever happens, however much he talks or doesn’t talk, he’s my gorgeous, beautiful, happy boy and I wouldn’t change him for all the world. 


To any other parents going through the struggle of having a speech delayed child I promise you this – it does get better. 

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It’s Been A Long Time, I Shouldn’t Have Left You…

… I sincerely hope you had a dope beat to step to. (If you don’t get it, never mind.)

Hello! I’ve been gone for too long, I know. I lost the will to blog to be honest. Lots has happened and I’ve been busy and stressed and feeling like I should be doing more productive things with my time rather than writing my self-indulgent little blog. But I do love my self indulgent little blog, so here’s a quick update on my life:

What I’ve Been Doing

DIY! Of sorts. I finally finished Zaki’s bedroom and I love it! I’m pretty proud because I did it all myself, from the painting to hanging the wallpaper, to putting up the shelves. No doubt I’ll go off it within a year but for now it’s my fave room in the house.

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What I’ve Been Buying

Too much stuff for my kids, that’s what! We go on holiday to Spain next month and my kids have about 6 outfits for each day we’re there. I, however, will be wearing the same ASOS dress I bought in 2014 day in, day out if I don’t get my act together soon. Always the way. Anyway, one of the best things I’ve bought is this t shirt for Omar. I love it!

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What I’ve been watching

Peaky Blinders, Peaky Blinders, Peaky Blinders. I am OBSESSED.

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I am totally obsessed. In true me fashion. And that means I now know all there is to know about Cillian Murphy, who is just so bloody beautiful. Heart eyes for days I tell you! Anyway, I came late to the party and recently discovered Peaky  Blinders on NetFlix. It was so bingeable it didn’t take me long to catch up and I watched the season 3 finale on Thursday night with every other sane person in Britain. Ahhh Thomas Shelby, how I love thee.

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If you haven’t seen Peaky Blinders you NEED to. I’m serious, stop what you’re doing and go and watch it right now. I never watch stuff people enthusiastically tell me I need to watch (probably part of my insulant nature) but don’t be like me. This is the best thing I’ve seen in years, you’ll love it!

Omar Update

He turned 3! My boy is 3 whole years old. I can’t get my head around it. We didn’t have a party this year because quite frankly he didn’t really get involved at his last two so I avoided the stress. I had planned on having a mini tea party but illness struck our house and it had to be postponed. I will still do that for him but with no pressure on him to play party games that he has no desire to play. We had some lovely days out to celebrate anyway. We went to a huge farm and Omar loved the outdoor play areas but the cows made him boke. To be fair, they did whiff a bit haha. 

 

He is still progressing with his words and communication, just very slowly. He says about 30-40 words now but still not mama! When will he say mama?! I really can’t wait for that day.

Zaki Update

Zaki is still doing well but he’s had a sickness bug that stuck around for ages and caused him to lose 4lbs so I’m trying to fatten him up again now. He has a cardiac check up tomorrow, keeping everything crossed that his echo scan shows all is ok. Zaki will be 1 next month, which is ridiculous quite frankly! He was only born 5 minutes ago. He cruises the furniture really well now and can manoeuvre himself off the sofa. He’s desperate to be able to walk and chase after Omar but his little legs aren’t quite strong enough yet. 

So that’s about it really. Or more accurately that’s all I really want to share on my blog. Sorry if you’ve found this post a bit dull, I felt I needed to kind of catch the regular readers up (if there even are any!) and thought this would be a quick way of doing that.

Comparison Is The Thief Of JoyΒ 

Once again I need to start by apologising for neglecting my poor little blog. Life has been quite hectic and I just haven’t found the time but I’m back now. 

So, since my last post on Omar, (Finding Out Your Child Has Learning Disabilities) which was about a month ago, there have been some developments. The main one being: we have some more words!!! For such a long time he would only say  two words (oh no and ball) but over the past 4 or so weeks this has increased to 20 words! (Not that I’m counting or anything.) His receptive language (understanding) also seems to have improved a lot and he generally just seems to be engaging more. The little toad still hasn’t said mama though, I’m so desperate for that word to come!

  
I’m not sure whether these steps forward he has taken can be put down to the brilliant speech therapist we have started to see; an online video program we started called Gemiini; or whether it was just time for him to start talking more. But I’m just so glad he’s moving in the right direction and we’re going to keep doing what we’ve been doing and hope it continues. 

With each new word he says I get ridiculously excited and it lifts me for the whole day. The first new word he said spontaneously was cat. We were walking down the street and he pointed to a cat and said ‘cat’. I wasn’t quite sure I’d heard it right and didn’t dare believe it. But then later that day he also said cake and balloon. I was so overjoyed but didn’t dare revel in it too much in case it was a fluke and he’d be stuck on those words for months and months and months, the same way he was with ‘oh no’ and ‘ball’.

But his words continued to increase and I’m so proud of him. I make him work hard with the tasks the speech therapist has given us but we make it fun too and so far so good. 

  
He also had an appointment with a paediatrician a few weeks ago. She was great and spent over an hour with us. She saw Omar in action; he was in a whirlwind mood and kept filling toy pans up in the doctor’s hand washing basin and then trying to soak her with them (I know it shouldn’t have been funny but it so was). He also managed to hit her on the head twice with a ball, clapping and cheering afterwards both times (which leads me to believe her head was the target). Anyway, she didn’t really tell me anything I didn’t already know in terms of his development. He is delayed. We knew that. But she did say ‘he doesn’t have autism’. She actually said it like that. Not that she doesn’t think/believe/suspect he has autism. Just that he hasn’t got it. I don’t know whether she’s able to know that just from one hour with him; I thought a team of people would need to be involved to make that kind of decision. But anyway, that particular paediatrician doesn’t think Omar’s on the spectrum and neither does his speech therapist. Honestly, I don’t think he is either. I’m not ruling it out though. Just in case. His behaviour definitely isn’t typical but it doesn’t seem to fit with autism either. I’m stumped to be honest. 

 

First day of his new pre school
 
Omar has started at a new pre school recently too and the staff there are so supportive. He’s only been 6 times so far but I’ve got high hopes about the place. I’m especially hoping they can help with his challenging behaviour. They seem firmer with him than his last nursery and are working on boundaries, which can only be a good thing because he has no concept of them at the moment. 

So at 2 years 10 months Omar says 20 words spontaneously and copies around another 5. I know this is waaaay behind typical kids his age but he is talking and at one point I genuinely feared that he never would. His 25 words bring me joy. 

On the way home from pre school, when he points to a tree and says ‘tree’ I’m so so thrilled. I’m ecstatic! I’m walking on air! Until behind us, I hear a child younger than him taking in full sentences, telling their parents what they did that day. 

Then it hits me again how delayed Omar is and the grief comes creeping back in. 

So I have to block all other children out at the moment. Because comparison is the thief of joy and I won’t let anything steal this joy. For now, other children are irrelevant. Even yours. Sorry. I will still be pleased for you when they reach a milestone or make you proud. I will like your Facebook posts and leave kind comments on your Instagram photos. And I’m not being fake, I am genuinely celebrating that achievement with you. But I’m ignoring the age of your child and I’m oblivious to their stage of development. It’s the only way at the moment. I need to preserve my joy. 

I hope you understand. 

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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Project 366 – Day… who knows?!

Predictably, I’m woefully behind with Project 366. Once the OCD of keeping up to date wears off, full on laziness sets in. I have a photo from each day, I just haven’t uploaded them yet. 

  
Anyway, here is yesterday’s photo. That’s the 21st February. I’ll have to work out which Project 366 day that is when I catch up. 

Omar looks so different without all of his big bouncy curls. I don’t think I like it. The curls must stay. 

Kid Constipation

*Warning: this post contains poo talk and general rankness*

I know I’ve been AWOL for a while and as per my previous post, the reason was my poorly 2 year old. Well, we got the the bottom of the issue (literally the bottom) and he seems to be almost back to his usual self. 

He had been vomiting every day, starting  around 2-3am, for a week and he’d had diarrhoea as well. So in the early hours of Wednesday morning I decided to take him to a&e because he appeared to be dehydrated and was refusing liquids. And quite frankly I couldn’t handle the prospect of further nights of hardly any sleep. 

It wasn’t the first time he’d gone through a longish period of diarrhoea and vomiting either. The previous times our GP had said it was virus and I’d just assumed he’d picked up a bug at nursery. But after the third episode I thought it must be something more than just a bug. 

Sleeping in the pretty grim looking children’s ward room

From a&e he was admitted to the children’s ward to be rehydrated and so a few tests could be done to figure out what was going on. Long story short – he was so impacted with poo that the new foods he was eating had no room to digest in his already full gut, so they were coming back up. Lovely. Constipation had been an ongoing problem but because of the diarrhoea I’d assumed he was clear. Not the case. The diarrhoea was food squeezing around the mass of stuck poo, in a desperate bid to escape the overcrowded gut of my son. 

As I said, constipation had been an ongoing issue. My second child was born with a congenital heart defect, very nearly died, and was in hospital for 6 weeks after he was born. During that time I stayed in hospital with him, for the most part in a hospital a few hours away from where we live. My eldest had just turned 2 and he stayed with my parents, and although he was well looked after, he was unsettled. It was the first time he’d been away from me for more than a few nights at a time and I was only seeing him once or twice a week when he visited the hospital. It was during those awful weeks that the constipation took hold. 

What causes constipation in children?

I had no idea constipation in children was so common until I took my boy to a clinic and it was rammed full of bunged up kids. The paediatric specialist explained that it is really common and there are several causes for constipation in a child; it’s not always as simple as just putting it down to diet. 

Illness – a period of illness, just a simple cold or tummy bug, can cause constipation.

Habit – if a child passes a painful stool once they might be fearful of going again and try to hold their poo in. Leading to harder stools and a vicious cycle. 

Diet – obviously if a child isn’t eating much fibre it can cause them to be constipated. 

Historic – some babies are born with bowel issues and might be constipated from birth. 

So how can it be dealt with? Initially I tried all the usual remedies; apple juice, prune juice, lactulose, etc. When they didn’t work my GP prescribed Movicol (a powder that is dissolved in water) but that still didn’t work. What was required was a disimpaction regime, which was started off at the hospital. The backlog (log! Haha!) had to be cleared out so the number of sachets of Movicol I gave my boy was doubled every day until he had the worst diarrhoea anyone in the history of the universe has ever had. I’m talking a tsunami of brown water from the bog of eternal stench exploding from his backside. In fact it was worse than that, I don’t even have the words.  

 

The universal chart of poo. Aim for a 5!
 
Once the stuff coming out was brown water with bits in I knew he was cleared out and we could reduce the Movicol to a maintenance dose. I’d been given a handy poo chart so I knew what consistency of poo I needed to aim for. (Seriously, I can’t believe the words I’m typing sometimes.)

When a kid has been constipated their colon becomes enlarged (doctors call it megacolon but that makes me snigger!) so Movicol is required, sometimes for years, to help retrain the gut and get it back into shape.

Although the doctors were generally great, no one really told me what to expect with the disimpaction regime or how I would know the poo mass had been cleared out but I found this great website, which has a lot of info: The Children’s Continence Charity. I’d recommend checking it out of you’re ever faced with a poo query. 

Or you could always ask me. I’m pretty read up on kid constipation now. Can’t say it was ever something I intended to master but such is a mum’s life!

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.

  

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