“It’s unlikely to be anything else”. These were the words spoken by Josh’s paediatrician, all but confirming what we had long since suspected but had waited months upon months for professional confirmation on. Josh has autism.
When I was pregnant with Josh, besides the sickness, it was the most exciting time. In fact, it is what inspired me to create Beauty Baby and Me. I was so excited, proud and ready to be a Mummy. I read every book and magazine I could get my hands on to prepare myself for labour and for motherhood. Of course now I know, those books and magazines don’t prepare you at all, although they are lovely to read at the time. But one thing I never read up on, that never would have entered my head was autism. Or, in fact, any additional needs a child may have. Because in your head you’re growing this perfect baby. Once you’ve had that 20 week scan and you get the all clear that everything appears well and good, then in your head that’s it; I’ve got a healthy baby coming. He or she will be walking and talking by one, meeting those milestones you get told about such as adorable clapping and waving, you’ll be merrily weaning by 6 months, you’ll be potty training at 2. You think you know everything… until you have the baby.
Of course for the first year of Josh’s life I still thought all of these things. It was when he turned one and I noticed there was no cute waving, or high fiving, or clapping or pointing, that I wondered, quite simply, why not. When his speech didn’t come along beyond inane babbling, I worried further. His nursery and health visitor picked up on his lack of social and communication skills. But everyone, from the professionals to our family, advised I wait till he turned two before being overly concerned. “All children are different, they develop at their own rates, he’ll speak when he’s ready”. I heard all the kind and reassuring cliches.
I think I knew. I think certainly by the time he turned two and his development had all but stalled I knew then. But yet autism is the one thing I never googled. In fact I’ve only really started to google it in the last couple of months in a bid to educate myself. Because despite it never entering my head before, autism is now a massive part of our lives.
It affects things that typical parents deal with every day, that probably drive them crazy and that they take for granted. I actually watch friends of mine potty training their kids with envy. We will have to do this with Josh but how on earth do you do this with a child who can’t say to you they need the toilet. Where do we begin?! I feel pangs of jealousy when I hear that friends have got their toddlers sleeping in beds now; I am longing to do this with Josh but I can’t do the bribery of reward charts and a new duvet set because that’s completely lost on him. He doesn’t understand. The envy I felt the day I took Josh to the park when he had the most epic of meltdowns, and I saw all these other kids running around playing in the sand whilst their Mums fondly looked on and enjoyed a chat with their Mum friends, it had a hold over me. Ashamedly I have to admit it was very much a “why us” moment.
But this is us. This will be our lives. Yes I’ll crave the normality that others experience with their toddlers. I’ll have fears of Holly also suffering with the condition and will be manically watching every milestone in the hope I will see her point, clap and say Mummy. Because every single day, I ache to hear Josh call me Mummy. I physically ache for it. I hear other kids driving my friends mad with constant “Mummmmmmyyyyyyy” and I think “you are so lucky”. It’s a typical, daily, mundane situation for most Mums but it’s one I’ve yet to experience and long to.
After our meeting with the paediatrician last week, which was actually very positive because now we know what we’re dealing with and what our next steps are, it felt like it took a day or so to sink in. By the end of the week I felt tiredness like I’ve never known – and that’s coming from a Mother with a complex toddler and a seven month old who behaves as though she is allergic to sleep!! Every part of me felt what I can only describe as heavy. The tiredness, mentally and physically weighed down on my body. I couldn’t shake it off. I could feel anxiety gripping me because of the exhaustion. I found it impossible to muster enthusiasm for anything from a hot cup of tea (Mum life holy grail) to a new perfume. I had no energy to muster any sort of emotion. I didn’t cry, I didn’t feel angry, I didn’t feel relaxed. It was almost as though I didn’t feel anything. A friend came over to take me out for a chat and a coffee and when I tried to explain to her how I felt there was only word I could think to describe it, and that was “lost”. Lost in this new world I hadn’t expected to be thrown in to.
Josh is teaching me, every day, how to be a good Mum to him. How to cope with his needs. If I’m honest I can feel myself withdrawing a bit from socialising. Not great, but I think the fact I can see that makes me realise I need to address it. It’s hard. Autism is such a vast spectrum and with some children it is very visually apparent; you could walk into a room and immediately recognise there is a child there with autism because of their mannerisms. With other children, like Josh, you could see him merrily playing with a toy and babbling to himself and not have a clue he is autistic. It’s not until the shit hits the fan when he can’t get the toy to do what he believes it should be doing, or when he spies someone else with a blue cup that he is going to make it his mission to have, that sends his mind into overload and him into meltdown, that you recognise that things are a bit extreme. And from the outside looking in, it’s more likely to just look like a kid being a little shit and a Mother not coping. But as we know, that is not the case.
But every day we survive. I am trying to do everything I can for Josh at the moment and I can’t lie, my mind is overwhelmed. I am sticking to activities and places that are “safe”, that we know, and although it’s making me see less of my friends, I am reluctant to step out of this comfort zone we’ve built ourselves. I need to for both mine and Josh’s sakes though. I’ve found a couple of local groups which I am going to try and hopefully over time I will make friends with other parents going through what we are. I know I need to start looking at the specific ways to do things like potty train a child like Josh, and I am also trying to do daily activities with him, one to one, to improve his concentration skills and encourage his speech. My mind is constantly ticking over “what next” and I am doing all this whilst also raising Holly. Perhaps this explains the uber tiredness because quite frankly, some days are very hard and very lonely.
I don’t quite know how to end this blog post; that’s how all over the place my mind is at the moment. But I started Beauty Baby and Me because of Josh; he was my inspiration. Now he inspires even more than I could have ever imagined. My blog will always be a space to write honestly about being a Mum and that includes writing about Josh and what we deal with day to day. I’m so grateful to those of you who read regularly and I hope you’ll stick around to see how our journey continues.
PS. I love the following words; they sum things up beautifully: