Two years ago I wrote a piece on how even though I parented so instinctually I ignored my gut feeling that my son Alex was autistic and how we managed to get on the waiting list for a diagnosis appointment.
Unfortunately for us, and many others in our situation, it did not go smoothly and he only received his diagnosis last month after having to seek a second opinion in a hospital over two hours away.
Alex is nearly six now and in his final term in reception at the local school. For me the need for him to get a diagnosis was so that he knew the reason why his brain worked a bit differently to others. Until he was officially diagnosed we hadn’t mentioned the word autism to Alex, this was a personal choice and was right for us in our situation. However, we did talk a lot about differences, especially as he is becoming more aware that his peers are different to him.
We always spoke about how differences could be a positive thing and how his brain working a bit differently means he is very able in picking up patterns and learning math.
When I sat him down and said that these differences we were talking about were due to the fact that he was autistic he asked if being autistic meant he was entitled to more pudding! This isn’t to say that it’s all been easy for us, the heightened anxiety mixed with the need of things going how his brain wants has led to a lot of tough days, but somehow we get through them.
For me I’ve experienced a wide range of emotions. On the train home I felt sane and validated. This was due to the team that worked with us in the morning as they truly listened to what I was saying and looked at all the reports people had sent in about Alex. Finally having an answer from a professional, even though I knew it myself, made me feel peaceful and not crazy. I haven’t felt sadness over it yet, which feels odd to me in itself. I cry a lot, I am a very overemotional person but feel like I didn’t cry as I knew the answer years before my conscious brain caught up to what is going on.
The main things I’m struggling with now are anger and envy. I’m angry at the world that getting the support for my child is so hard and time consuming.
I’m angry I have to fight so hard for him to have an equal opportunity to succeed at school as his peers.
I’m envious that other parents I know don’t have to spend a large portion of their spare time writing in communication books, preparing for meetings with the school SENCO (special educational needs co-ordinator), filling in sixty page forms to get a little extra funding to pay for additional things my son needs (such as therapies and groups aimed at children with additional needs) and the fact that when something is labelled as sensory or as a disability aid the price somehow needs to be increased ten times.
I’ve had to pay and complete a course off my own back as we were stuck in the NHS version of purgatory, in line for an appointment but not far enough in the process to access any real help. I feel like I have lost my mum identity, yes all parents advocate for the needs of their child but this is so much more than that. I feel like I am doing the jobs of five or six people and missing out on true mum time with my son.
At the end of all of this I know that we will both get through this and I am sure that I’ll come to accept the new mum role that I now hold. We will keep celebrating the milestones, no matter how much later they come for Alex and we will keep pushing forward because I can already see that my lovely little boy will turn into an amazing adult when he grows up. I am very lucky to have found my tribe. We don’t meet up often but we are there for each other online, it is an easier way as hardly any of us get any sleep! Finding these people has helped me tremendously. Without them I don’t know how I would have got through all of this.
Having someone who understands the stress of appointments and emotional rollercoaster of the whole process makes you feel less alone.
I also feel like I can share Alex’s milestones with them and them joining in the celebrations with me. Where some of these milestones are years after his peer group has already met them I find it hard to share with a lot of people as they may not see how much of a bit deal it is to us. Just because they may arrive a bit late doesn’t mean we shouldn’t properly celebrate these new skills.
April is Autism Awareness Month. Most people have heard of autism but a lot of people don’t really know what it means in real life.
The journey is both amazing and extremely difficult so a lot of the autistic community isn’t asking for awareness this month, they are asking for acceptance and this can only be done through educating ourselves.
Remember that autism is a spectrum and that means people on the autistic spectrum all have different needs to one another and in turn will act differently. Understanding why some autistic people stim or why some use ear defenders can help form your knowledge around autism and other additional needs. And be open with your children about differences, every one of us is different and this needs to be something that is celebrated not used against people. Knowledge leads to awareness and with kindness you get acceptance. A little kindness can go a very long way.