Saying Nothing Says A Lot 

I get it. Talking about learning difficulties is awkward and uncool. People don’t know what to say so they just skip past it, as if I haven’t even spoken. I do get it. 

But I still get pissed off. It still pisses me off that my thoughts and feelings aren’t acknowledged. Not because I’m important and deserve to be heard, but because I’m seemingly being ignored while parents of typical children are eagerly chatting away to each other. 

Remember that scene in ‘The Beach’ (the Leo movie with the All Saints song) where a man with a manky leg is taken to the opposite side of the island to fester and die alone because his presence is ruining the enjoyment of the idyllic beach for the other non-manky legged inhabitants? Well I’m the man with the manky leg. Me talking about the struggles I have with my child with learning disabilities pricks the parenting bubble of the ‘normal’ mums and they just want to enjoy that god damn beach without me ruining it for them. 


I commented on a well know blogger/vlogger’s Instagram post the other day. It was World Book Day and she’d posted some corny shit about how children are made readers in their parents’ laps. Then some other earnest parent smugly commented ‘a child who reads is an adult who thinks’,  as if she’d imparted some massive and important pearl of wisdom. [Insert eye roll emoji here.]

My comment wasn’t bitchy or self pitying, I just wrote that my child had no interest in books due to his learning difficulties and I wished he would sit on my lap to read. I guess I was trying to make the point that it isn’t always down to the parent if the child isn’t into books. And it doesn’t mean that my child will not think as an adult because he didn’t read ‘That’s Not My Train’ as a 2 year old. 

Straight underneath my comment an online children’s store account wrote ‘reading on laps is the best!’ and then went on to try to flog the blogger a book that was conveniently stocked in their shop. They totally ignored my comment.  Insensitive. But it’s okay, they had a book to flog. 

What pissed me off though, was that this blogger then replied to the childrens store account but ignored my comment completely. Just totally ignored it. Like it wasn’t even there. And she’d seen it because it was directly above the one she was gushing over. 

If this face doesn’t say ‘pissed off’ I don’t know what does

Okay, she doesn’t have a duty to reply; okay she might have been busy; okay she might have overlooked my comment and not seen it. But I doubt it. I think it was too awkward and she didn’t know what to say. So she ignored it. It happens a lot. 

Some of my own friends ignore the issue. Just never mention it, like it isn’t happening. And if I start to talk about it they close down; don’t reply; change the subject. One even told me she wasn’t being rude, she just didn’t know what she was supposed to say and it made her feel uncomfortable. Jeez. Sorr-y. 

Other friends try to help. Send me links to articles about how one boy ‘beat his autism’ when his mum cut out gluten from his diet. Or tell me how a friend of a friend had a son who didn’t start to talk until he was 5 and now he wouldn’t shut up. Or tag me in posts on Facebook about how great dogs are for children on the spectrum. 

Some friends tell me what they think I want to hear. Try to convince me that there isn’t actually a problem, he’s ‘just a typical boy’, he will ‘grow out of it and be fine’. I actually feel for these friends because I too can be guilty of telling people what I think they want to hear. People pleasing. It’s an affliction. 

A few friends just listen. Even fewer actually ask me how my boy’s doing. How I’m doing. Ask me how I’m feeling, if I’m getting enough sleep, if I’m getting enough help. They tell me they admire my strength but if I’m not feeling strong it’s okay to lean on them. They’re there for me. They don’t have the answers but they’re there for me. These friends are few but they’re invaluable. 


If you have a friend like me I implore you to be amongst the latter group of people. Don’t profess to know how they feel, just ask them and listen. Just be there and let them know you care about them and care about what they’re going through. I never expect anyone to give me a solution but sometimes I just need to be able to talk and put my worries out there. Without fear of upsetting someone with my sadness or making them feel uncomfortable. 

And if you don’t have a friend like me but if someone happens to mention their child’s disabilities to you, for the love of God don’t ignore it. Respond to whatever they’ve said in some way. Being a special needs parent is hard enough as it is without feeling we’re being ignored. 

We’re not looking for solutions and answers, we just need to talk things through and let out our worries/fears/emotions sometimes. Or in my case with the blogger, give another perspective; speak out on behalf of those who are different. Remind people that not everyone is going down the same path with their children and we matter too. 

Comparison Is The Thief Of Joy 

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 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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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.

 

At What Age Should I Leave My Baby Overnight?

It started when my baby was 4 months old – my friends suggesting I leave him for a day and night to hang out with them. They are good friends, great friends, and I have no doubt they believed it would be good for me to be away from my kids for a night. To relax, to eat a meal without being interrupted every 10 seconds and to get some gorgeous, uninterrupted, deep sleep. It does sound good. Especially the sleep part. That sounds marvellous actually.

At 4 months old I wasn’t ready to leave my baby
But it was never going to happen that early on. My baby had a rocky start, which no doubt has made me super cautious with him. But regardless of that, I really don’t think I would’ve been ready to leave him at 4 months old, even if he hadn’t had heart surgery. I wasn’t ready to leave my first baby that early either. So I told my friends that and they accepted it.

My baby is now 7 months old and the issue has come up again and again. My friends and I would excitedly be arranging something through a group text chat and it would dawn on me that they were assuming we would have an overnight stay somewhere. And that I would be fine that. But I’m not. Not yet anyway.

And there’s another issue… my husband works unsociable hours and he wouldn’t be able to look after the kids if I was away for a night, so my mum would have to step in. Can I really ask her to have my baby overnight knowing that he is the world’s worst sleeper and still has at least one night feed? I don’t think I can. That’s assuming she was even free to look after my kids on the night in question. She still works part time and has other commitments that keep her really busy. It’s also assuming that she would agree to have the baby overnight and she won’t, she’s too worried he’ll stop breathing or turn blue.

Still not ready to leave him at 7 months.
But aside from all that, I am just not ready. Even if my mum was itching to have the baby overnight, or there was someone else I trusted to look after him, I’m not ready to leave him for that long. I’m not ready to not put him to bed and I’m not ready to not be there when he wakes.

Am I being clingy? Do I just need to convince my mum to have him overnight, bite the bullet and go? Or is it still too early and my friends just don’t get it? If it is too early, at what age should you leave your baby overnight?

I suppose the answer to the question is, when you’re ready. When you’re ready because you feel your baby’s ready. When your baby wouldn’t be distressed at you not being there. When a night away from your baby wouldn’t just be a huge worry-fest consisting of tears on the drive away and a million calls home. When you would actually be able to enjoy the time away to let your hair down and put yourself first for a little while.

I’m not there yet and I don’t know when I will be but I refuse to give myself a deadline of say 10 months, 1 year or even 2 years. When I feel ready I will leave my baby for a night but not a minute before.

My friends don’t get it, they think I’m being over-protective. They don’t say that but say other things like ‘oh your baby’s a tough cookie, he won’t even notice you’ve gone, don’t be silly…’ etc. They don’t seem to get that it’s me who isn’t ready for a night of separation yet. Or if they do get that, they think it’s totally unreasonable. 

And don’t get me wrong, I know there are some mums (and dads) who leave their baby’s overnight much earlier. Through choice or through necessity. I’m not saying they shouldn’t, or judging them at all. The same way I hope they wouldn’t judge me for not wanting to leave my baby yet. 

  
I don’t think there’s a golden rule when it comes to this issue. Except only leave them when you are ready to. Otherwise the night away won’t be any fun anyway and what’s the point in that? My view is that you may as well bank the babysitting hours for when you are ready to go all out and have a baby-free blast. 

I’d love to hear other people’s views on this. Do you agree with me or am I just being a massive mumbot?

Little Snoopy Bargain! (Project 366 – Day 39)

  
Not the best photo of Zaki but how cute is this jumper?! My sister found it in H&M for the bargainous sum of £1! Yep, one English pound! 

We had a Snoopy video we watched over and over again when we were kids (although in hindsight it was really weird – Snoopy had a row with Charlie Brown, ran away from home, ended up encountering loads of ‘No Dogs Allowed’ signs and moved in with a girl who made him wear a dress and have tea parties.) But anyway, I’ve had a soft spot for Snoopy since then so I totes love this jumper.

Here’s hoping my sisters finds more £1 Snoopy bargains!
  

Rusky Business (Project 366 – Day 37)

  

I know it’s not the done thing these days to give your baby a rusk but Zaki had one and he absolutely loved it! He was making all kinds of appreciative chomping noises and actually cried when he’d finished it, haha!

Weaning has been more difficult with Zaki than it was with Omar. To start with he wasn’t keen on solids AT ALL. He would spit everything out and screw his face up. After about 3 weeks he got used to eating and would tolerate it but still wouldn’t put anything in his mouth of his own accord, so baby led weaning was out. 

5 weeks on and the situation is much easier now. He will happily gnaw away on toast, banana, courgettes and of course rusks!