My Joshy Bear

With a newborn baby (well not so much now – she’s 14 weeks tomorrow!), I’ve been quite bad for not writing about my beautiful first born recently. And we have had a lot going on with Josh so I thought I’d fill you all in on how our boy is doing.

I’ve had suspicions for a while that something was not quite right with Josh. In some ways he is so switched on but there have been areas he has fallen behind on; his speech has yet to develop beyond the odd single word here or there, he finds busy social situations very overwhelming and there are several basic milestones he’s never achieved such as waving or pointing.

Up until Josh was approaching two years of age everyone said to me to just be patient, to give him time, that boys are typically a bit slower than their female peers. And this came from everyone from family to the health visitors. Yet I always felt deep down there was something amiss that I was going to have to investigate further. I guess it’s true that Mum always knows best.

We had Josh’s two year check and at the first one (bear with me) they had recognised he was stalling in some areas and said they’d review again in six months. But within a matter of weeks the two year check appointment was duplicated. Rather than call them up and say we’d already had it we decided to go to it and really push for the support it was becoming apparent we were going to need. Fortunately we were listened to and we had a really thorough appointment where we were instructed to set up a self referral to the speech and language therapist which we did straight away. I was beyond devastated to be told that the wait list was 18 weeks. This was at the start of February  and the wait sounded like it was going to take forever.

However around this time Josh’s nursery stepped in and put together an individual education plan tailored to Josh’s needs and mannerisms and pushed for the speech and language therapy from their side too. And it worked because as I write this at the end of April, we have an appointment to meet with a therapist this afternoon at the nursery following them observing Josh for an afternoon. It’s still been a long wait but not as long as 18 weeks which is positive and I can’t praise his nursery enough. He is now attending two full days a week and is downstairs with the older children and although he doesn’t particularly play with the other kids he happily plays alongside them. His confidence has grown which is beautiful to see and he skips off without looking back when we drop him off.

A big milestone for Josh this week – getting his hair cut. This is something he’s found genuinely traumatic in the past but with the help of my amazing hairdresser and a lot of home comforts, he’s looking beautifully handsome and did so well!

So a lot of you will be wondering what other things I’d picked up on with Josh alongside the lack of speech. He’s always had some funny little quirks; since a very young age he’s had an attachment to blue toys. No matter where we go he will find a blue stacking cup or blue building block and carry it around, refusing to be parted from it. At around the age of two we noticed he was doing a lot of lining up of things and having to have things in a particular way. I haven’t tried to fight this though; in fact I praise him for it. Every bath time he will get all the bottles and toys around the bath and line them up in a row. I don’t want his quirks to be something he has to shy away from, I want to celebrate every aspect of him.

Turning two brought the typical toddler tantrums and combining that with Josh’s frustrations and struggle to communicate meant that some of the meltdowns we’ve experienced have been colossal. I’ve been hit, had my hair literally pulled out and had him throw anything and everything he can get his hands on. I’ve had to learn quickly how to handle things. I don’t ever leave the house without an array of blue items in the changing bag – seeing and having them gives him comfort, I am guessing because they are familiar to him. Another tip I got given which has really helped was to bear hug him when he’s in that meltdown territory – it compresses the nervous system and helps to calm him. I used this technique the other day and it really helped; we’d gone to a lovely local play place and were meeting my lovely mother in law there. We had arrived first and I could see Josh wasn’t impressed t having to wait in the car so I thought we’d walk in and sort payment and my mother in law could meet us in there. But as soon as we got to the entrance to the building, Josh went to run all the way down to the outdoor play area. With Holly on my hands as well and someone eyeballing me as we’d not gone in and paid yet, I tried to explain to Josh that Mummy had to go in and pay. Even writing that now I feel stupid, because he was never going to understand.

My words were met with sheer fury. It was probably the biggest meltdown I’ve had to deal with to date and I had to do so in a public place with people looking (although I must say I didn’t feel judged by any of the Mums watching – they were all very sympathetic glances, as if to say “we understand, we’ve been there”) but I just had to zone them out and concentrate on handling a situation that could get out of control. Thankfully Holly was content in her car seat and paying no attention to the impending meltdown her brother was having. I had my face hit, scratched, he had a load of my hair in his tiny fists from where he pulled it in anger. He had perfected the “my body is made of lead” stance and picking him up was proving near on impossible as he was kicking out.

Every part of me just wanted to bundle us back into the car and get us back to the safety of home where I could cry with Josh. I felt panicked, lost, and like I was failing for not instantly calming him. But the logical part of me wasn’t having any of it. I was telling myself “you are not getting back in that car” over and over. I wasn’t failing, Josh was just gone. I can’t think of how else to word it, but once he is in that zone it takes some time to pull him back. Above all I was doing my damned best in a very difficult situation. Then like some sort of angel my Mother in Law and her friend were suddenly there and without any fuss, they just took Holly and all our stuff inside so I could deal with Josh. Another tactic I tend to use is removing him from the situation; so if we’re at home we go to a different room for example. This place was a massive indoor and outdoor play centre so my best bet was to just take him to a different area. I managed to carry him over to a quiet garden area, got him some milk and held him tightly in the bear hug as he drank it and calmed, getting his breath back and fortunately he got through it. It was difficult to see him go through such a massive loss of control but we ended up having a lovely time and Josh had a great play for over two hours. So really it was a victory for us both.

Some days are tough……

Some days are incredibly hard. I’ve got Holly too remember so I’ve got to try and keep her happy, calm and not picking up on the stress of Josh going into one of his bad moods. I’ve quickly learnt the things to do to help Josh; distraction is always a winner. Some days we overcome the stress of it all and other days I am crying out of guilt, or not knowing exactly how to pacify him. A lot of the time I am just excited and Sam comes home to these carnage like scenes! My husband is amazing but being the one who stays at home (and that is my choice) I am the one who gets the shit end of the deal when it comes to the tantrums. And it’s hard sometimes because I feel like I am always the one trying to handle his meltdowns and taking the shit that comes with him yet Daddy is undoubtedly the favourite, I guess because he’s not the one at home telling Josh no for this that and the other.

But when Josh is in a good place, which he is a vast majority of the time, he is such a joy. He’s funny, he’s cheeky, he’s a bundle of energy. Even in the last couple of weeks we’ve noticed him showing more interest and affection for Holly, he’s attempting to repeat more single words and he is loving the sunny weather so he can run off his energy in the garden.

It took me a while to even say the word autism although it was what I suspected from early on. And I found it quite hard at first when I spoke to family about it and they agreed they’d had similar suspicions. But I am in the process of educating myself; I am learning about what autism really is (not the scare mongering crap you read on Mail Online), what it involves and opening my mind to how it might affect Josh’s future, if that’s what this is. We have a long way to go before we get a diagnosis of whatever this is but I want to have knowledge and understanding of what it could be. I don’t want to be scared of the word. I want to embrace it and I refuse to feel any guilt or embarrassment. I don’t know what I am going to be dealing with but I know I want to be the best Mum possible to my boy.

I don’t know what today’s observation will bring but it’s a start. A step in the right direction. We’re doing everything we can to help Josh, from learning makaton (Mr Tumble actually has his uses) to making sure that there are always things he finds comfort in within easy reach. We are trying to make life a bit easier for all of us but it’s all trial and error and for all of us it’s a constant learning curve. But we will gt there. Josh will get there – he’s my first born and it breaks my heart when I see him frustrated. I will do everything in my power to help him and make sure he continues to have a happy childhood and life.

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2 Comments

  1. April 26, 2018 / 12:47 pm

    It sounds like you have had a lot on your plate hun but it’s promising to hear that things are moving in the right direction and it will be good to get some more clarity on where Josh it at with the observation – whether it be a diagnosis or perhaps not. You sound like you have an amazing mindset about it all and as always you know we are all here for you over at #coolmumclub xoxo

  2. April 26, 2018 / 7:41 pm

    Oh darl, that sounds like a total rollercoaster. The first few months dealing with two and with all this worry on your plate too. It sounds as though you are tackling your fears in the right way, learning about ASD and reaching out to the right people. My step dad is a consultant in ASD and I’ve been to some of his talks, it’s such a broad area and *if* Josh is diagnosed, there is plenty of help out there for both of you. Always here honey xx
    Thanks for linking up to #CoolMumClub – fab to have you back Maverick!
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