Playing the Waiting Game

I feel like I’ve spent a good year waiting for things.

Waiting for Josh to turn two (the magical age everyone told me to wait to till he might start to speak), waiting for the inevitable appointment with a speech and language therapist which transpired into waiting for a whole load of other appointments. Waiting for paediatricians, occupational therapists, hearing tests, doctors appointments.

Some of the waiting has become a joy; the sort of excitement normally reserved for a 6 year old patiently awaiting Christmas morning. Waiting for Josh to speak, waiting for the new word of the week or month; hearing his voice is the biggest reward for the patience.

Josh has now had his long awaited (11 months) assessment with another paediatrician and associated experts (Speech and Language and Occupational Therapist) in which he was watched for less than an hour but almost certainly defined by these three strangers who know far more than I do about what we’re dealing with. Its almost crazy to think these three people have such a massive part in my child’s life; more so than perhaps they realise. To them that day, Josh was another patient, a child with additional needs that they needed to narrow down in order to diagnose him and advise us on the way forward before discharging him. They’ll have gone home that night and most likely, switched off from work, as we all do. In my head though they play a huge part in Josh’s life at the moment and now I patiently (not my forte) wait to hear what they think. Because their diagnosis, which may be another 8 week wait, will determine Josh’s immediate future. We don’t know how things will be in the long term, and I suspect they don’t either. But they will be able to give us an idea of the severity of Josh’s autism ( the highly likely diagnosis; “it’s unlikely to be anything other than autism” is what we’ve been told so far) and how we proceed with things over the next couple of years.

I wonder if they know the power they have. I wonder if they have any idea how badly I just want to hear their thoughts, what went through their head when they observed him. Their “findings”. That’s what the meeting is called where we will receive a diagnosis; “a findings meeting”. Like he’s some sort of scientific discovery! Not a detrimental meeting that will potentially give my son a label that we and he will have to embrace, accept and, in our own way, celebrate so that he only ever perceives himself positively.

I admit, quite ashamedly, I’ve found the paediatrician meetings draining. Because they, quite sensibly, give you a different paediatrician at each of the two thorough observations Josh has had, in order for them to have two expert opinions, you therefore have to go through everything twice. The questions, them wanting to know when you started to suspect something, what you thought, what were the signs, how is his behaviour, what are his meltdown triggers. By the end of both appointments I felt like I couldn’t even answer their questions. Not because of some petulant attitude or because of any form of denial, but because I felt so so so tired.

I think about it every day. Autism. A word, a condition, I never thought would be part of my life. Why would I. Why would anyone until they’re suddenly up against it. And it’s not the easiest of things to educate yourself on hence why there is such a vast spectrum. It’s a minefield. Interestingly at the recent assessment the paediatrician asked my husband and I if we had gone online in an attempt to read up about autism and learn a bit about it. My husband, a methodical and logical man said he had (which I feel is a big thing for him; it’s all part of the acceptance). He would want some sort of answers – to know which of the typical traits Josh displayed, in order to get a realistic idea of this was what we were dealing with. I respect that he did that so much. I think it would have been a big thing for him even though I doubt he’d ever admit that.

My answer to the paediatrician, be it wrong or right, was no. I have not gone online and read up about autism. I’ve flicked through a few leaflets that I’ve seen in the centres were we’ve had appointments that will have been put together by a marketing department trying to define a massively vast disorder that can affect each individual completely differently with perhaps limited knowledge. But other than that, no. I’ve not “researched”. I find it hard to put into words why not. I wouldn’t say it was denial; I knew something was wrong a year ago when Josh had a parents evening at nursery and I was the one who mentioned the word autism.  But I’ve found being a Mum to a child as complex as Josh quite isolating. Lonely. Not because I don’t have supportive people around me because believe me, I do. But I find it hard to find anyone who gets it. So through my blog and Instagram I reached out to other Mums in the same boat as me. And my God did I find some gems. Other Mums who just knew. Who just got it. Who knew a meltdown for us isn’t just a tantrum but an upsetting and scary episode for our kids who are often misunderstood by others. I explained this to the paediatrician and although I could see he wasn’t expecting that answer I also saw that he respected it.

Speaking to these Mums helps me cope. They don’t know it; I don’t think they realise how much they help. There are three women in particular who are always there with a kind ear, similar experiences and advice. They understand that feeling of dread you have in your stomach when you have to wait somewhere more than a minute (I’m not exaggerating ). They understand my need to do a reccy of someones house before I visit with Josh. They understand why the thought of a holiday in the sun abroad fills me with dread now (something I never thought I’d say). They celebrate with me when we’re having a good week. They get the tears of joy when I post a video of Josh saying a word. Don’t get me wrong, my family and friends celebrate these wins too and feel the ecstatic emotions, but I have to say, these Mums save me some days because we’re in the same boat.

And now here we are. Once again waiting. In a way I can’t wait for the meeting, to get the expert advice, to push for support and guidance on certain areas and to hear an expert confirm what I’ve long since suspected. There’s also part of me dreading it though…. because you get the diagnosis and then get discharged. Yep; here’s your child’s diagnosis of this life long condition that people don’t know much about, off you go. That is a scary prospect. I am keeping faith that I will get advice and support and that we won’t be left on a limb but I have no doubt we’ll have to fight for it. And we will.  But I have to admit, for me as a Mother, I have found it all so massively overwhelming, and I still do.

But y’know what. Tonight I put Josh to bed, and I sang Twinkle Twinkle Little Star to him. And he attempted to sing it back. I encouraged him with big proud tears in my eyes and a heart that was about to burst. He’s trying.  He’s giving everything a bloody good go. And the pride I have in him, even when he’s pushing my to my absolute limit, is indescribable. He is, quite simply, amazing. A beautiful, unique, funny and amazing little boy. And he’s my son. How proud am I to say that!!

I turned 35 last week. And I feel like I’ve learnt more in the last year of my life than I have in the previous 34 years combined. I’ve learnt patience. Don’t get me wrong; I still am a bad tempered cow in the car (Sunday drivers….!) or if Sam is taking ages when we’re trying to get out the house (honestly, is it a man thing?!) but when it comes to the important things, I have come to realise it takes time. Time to learn, time to accept, time to listen. Time to realise I am not alone in this ever changing hand that life has dealt us. Time to realise through all the challenges we are actually pretty damn lucky compared to others who are dealt far more cruel hands in life.

Who knows what the next 8 weeks will teach us. Who knows what the next 8 years will give us quite frankly. But I’ll continue to share our journey. And one day Josh can read it back and know how incredible he has been from day one, label or no label.

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