The purpose of this blog is for me to have somewhere I can empty the contents of my mind. I am a worrier, an over thinker and a ‘lets read into this situation 16 gazillions times more than any sane person would’ kinda gal. When I speak about autism, I do so as a mother of an autistic son, I am not a professional and I do not claim to be one. All I can do talk about my experiences of raising a child with autism and what the reality of that situation looks like for me and my family. Parenting is such a hard topic to write about, in the sense that everyone has an opinion on it and how it should be done, even if they themselves have no children. Talking about parenting a child with learning/developmemtal delays or something such as Autism Spectrum Disorder or Sensory Processing Disorder can open up a whole new can of worms. So as I stated, I can only really talk about my reality and hope that people can support and encourage me on my journey and I would love to think I can do the same. I have put this little paragraph as a little intro before moving on to my main blog post so people can try and read the post with a little more understanding of where I am coming from.
The autism we know may be different from the autism you know or may have heard of and that is ok. It’s called a spectrum. This is something that I have to remember on a daily basis. My son Zachary is a real little social butterfly, he is so chatty, generally loves hugs and even the odd kiss,when he goes to nursery one of the first things he will do after hanging his coat and bag up (thats part of his daily rituals/rountine, that must not be tampered with) is run over to where the other children are playing and join in with whatever the activity is they are all participating in. Now this comes as a surprise to most people as it goes against the stereotype of an autistic person, he doesn’t exactly sound like rain man (on a side note, can you believe I haven’t ever seen that film). With Zachary he is in an interesting situation, where many people look at him and they will say, there is nothing wrong with him. He looks fine, he can greet people, he doesn’t tantrum very often and generally appears to be neurotypically normal.
With Zachary you almost have to look for the subtle hints, that are so easy to miss. It is the fist clenching, the flapping of his hands, the mouthing of objects. Its when he looks at you and appears to make eye contact, but he is actually looking at your forehead, or when he physically recoils when you try to make physical contact. When he is at home and he sits on the arm of the sofa, its because he doesn’t want to be near any one. When his younger brother tries to play with him and he screams, before he has even had a chance to touch him. Its the tip toe walking, its the inability to maintain a conversation or tell you what he did that morning. Its the fact he doesn’t always know what to do when someone is hurt or upset and will often lie on the floor and pretend to cry. It is the fact he doesn’t know how to say more than ” Hello, Yes and Goodbye” when talking on the telephone. The fact he is still completely nappy dependent and will not even attempt to communicate when he has been to the toilet. It is the fact he is able to count to thirteen and yet has no concept of what numbers actually mean. It is the fact that he gets completely over stimulated and this can result in him either completely shutting down, to the point where he physically will cover his eyes and ears or even just zone out (this normally only lasts for a few minutes) or even worse like today, when he becomes some distraught he completely loses the ability to function to the point he can not eat, walk or speak. communicating solely through screaming and hysterical crying. When the only thing that will calm him at times of distress are repeatedly watching the same videos of himself over and over again, Deep pressure massage to the point you worry you are hurting him or taking him to his bedroom where it is completely dark apart from his new space rocket led lights and watching him place a pillow over his head as you gently make a noise that resembles white noise. These are the moments i don’t doubt his diagnosis, we are lucky, I don know if lucky is the right word as I don’t wish to imply someone who experiences this more than us is unlucky. However for us, the big things don’t happen too often and lots of things we have learnt to work around.
It is really difficult to write about autism and not sound negative. With Zachary it is difficult as sometimes as he can appear to ‘blend’ in rather well, you fell like you are isolating him for no reason. Then when you take him to a Special Educational Needs group, you are told how ‘normal’ he and high functioning he is, to the point you feel like you shouldn’t be there. I wouldn’t change Zachary for all the diamonds in the world and as I have said before, he wouldn’t be Zachary without his autism and sensory processing disorder. Zachary has come such a long way in such short time, he has really come out of his own world which he was completely immersed in last year. Now he is out here with, he is just unaware of many things, one of the things I am truly happy for is that he is not aware he is different. When he was at nursery and he wanted to wear a witches dressing up costume and a boy inc his class came up to him and said ” Why are you wearing a dress? Dresses are for girls” I just thought wow, Zachary has no concept of the difference of boys and girls, let alone defining certain things for one particular gender over the other. Another time a girl asked him why he wears nappies, he nodded and said “cereal” I laughed as I thought not only did he not understand the question, but he has no idea the other children don’t wear nappies. I love that about him, that he isn’t bogged down with working out societies agenda for him, he just does what he does for enjoyment and receives real pleasure from simple tasks such as blowing bubbles, water play and making funny voices.
Zachary has such a captivating personality, that you don’t care he has development delays, he is 12-18 months behind in most areas, but I don’t care, he has maintained the same level of delay for almost 12 months and that is fantastic as he is still progressing. This is a snippet into the autism that we know and as I said it may be different from what you know. I take comfort on the days I take comfort on the days i try and convince myself there is nothing wrong, that is a spectrum and I also take comfort on the days like today, when there is not a shadow of a doubt in my mind he has the right diagnosis, that it is a spectrum and we will meet people on all different places on that spectrum and they are all as unique my wonderful Zachary.
Just remembers his saying when you meet someone with autism
Thanks for reading