I have always wanted to be a mother; I have been blessed with three amazing boys who fill my heart and life with so much joy. All three pregnancies were healthy, they all grew and achieved their milestone accordingly. But when my second son was around 18 months old, he caught a virus/flu, he went from being a happy and independent baby. To a clingy, withdrawn and quite baby. After he overcame his sickness, I began to notice that he was no longer saying the few words that he once did. No “mama” no “dada” and the other small words that children around that age would say. It was clear to me that something had changed and that we needed to seek advice. When you have an older child, you cannot help but compare them and it was apparent that my sweet boy could no longer maintain eye contact or communicate with me verbally.
I went to the GP to report my concerns, he referred my son to speech and language therapy and for a developmental assessment. The referral did not take that long, because by the time his second birthday came, we were already doing the first speech and language session. The speech therapist was fantastic, she worked with us as a family to support and encourage his speech. In one of our sessions, she mentioned that she thought that my son might be autistic, no one had said this to me previously. So, when it came time for his developmental assessment, I was ready with my questions and to share my concerns. During the developmental assessment, I questioned whether or not my son could be autistic, and I was assured that he just had a severe speech delay something that he would grow out of. Each year after the developmental assessment continued but no referral was ever made for an autism assessment. It wasn’t until my son was around six years old, when I started to read up more about autism and realised that a lot of things that I was reading related to my son. He still couldn’t maintain eye contact or communicate verbally. I then decided that someone needed to make a referral for an autism assessment, I asked the GP and the school to both make a referral as I had read that the process was a lengthy one.
Words cannot begin to explain how to describe the pain of your child, not calling you “mummy” and how hard it was not knowing what your child is saying. His way of communicating was to tap and point. It took some time for me to realise that my son was now non-verbal, he was getting frustrated when not knowing how to communicate with us. As the years went on, with the help of a great speech and language therapist. We now have a 11-year-old, who is growing in confidence and can have a verbal conversation with most people. Work is still being done with a great speech therapist, to continue to develop his speech.
We have had many challenges, but along the way I have learnt that asking questions, raising my concerns with the relevant people and follow up on matters that concerned me. For example, if I was waiting longer than a reasonable time for an appointment, many phone calls would follow to ensure that an appointment was made, or a report had been written in due course.
Our journey has been a world wind that has taught me so much, I continue to fight for what I believe is right for him and us. There have been so many times when I have cried, because of the stress I have felt trying to find the right environment for him. Whether that is school or finding the right professional to support him. I feel like I am always fighting someone, somewhere for something and I may feel like that for a long time. Because, if I have learnt one thing it is that an autism mother/parent is always prepared to fight for what they believe is right for their child.
There are still times where I have been in public with my children, and someone gives me a strange look, or you hear the oddest comment. Mostly, because I am that parent who is not afraid to take my child out even if they are having a bad day. Whether that consist of my son having a full meltdown in the supermarket because the lights are too bright or if he becomes overwhelmed with the noise. In the early stages before a diagnosis, I had not learnt about a sensory overload or that taking a trip to the supermarket would be so stressful on him. But many times, I believe that it is the attention I received from the public, that made that situation even more stressful. Because often you don’t receive a caring glance or a helpful voice asking are you in your child, okay? It is the judgemental, confused looks that makes you feel as if you are a bad parent. There was a time when we were having breakfast in a café and my son refused to eat his toast, because it was covered in butter. Little did I know that he did not like butter on his toast, or most wet foods. Yet, I heard voices over my shoulder, “how rude?”. Now I constantly have to explain to people that the behaviour that my child displays is not because he’s rude, or not because I’m a bad parent it’s because he’s autistic and he does things differently. Some people within society need to take time to allow parents to be parents, unhelpful comments and judgements are unhelpful when you’re trying to comfort a child in distress. Now if I see a child with their parent/s in distressed anywhere, I offer help because I have been there and I know how stressful situations like that can be.
I’m not sure if I said this before but, I am sharing my experiences with the hope that someone can relate and feel like they are doing a good job. It can be extremely challenging going through an autism journey. Pre-diagnosis for me was the hardest time as there is so much, I didn’t know, so much I hadn’t been educated about and feeling like I was still getting to know my child. Before a diagnosis, in my opinion, professionals tend not to want to communicate with you on how to effectively support your child. After diagnosis so many doors open, so many support measures are put in place and there are countless parenting groups/courses you are offered. If you are lucky, sometimes accessing the services can be challenging for some. But keep fighting, keep strong because at the end of the day no one knows your child like you do.
Cherilee x
