Autism Awareness Month Day 18

Monday Monday…
Nae-Nae was still off school today and she has a thing about having 100% attendance so she needed to confirm with me that she had an inset day. She knew she did but she came to me asking “Is it Inset day today?” I replied Yes. A few minutes later she came back again “Is it inset day today?” I replied “Yes Nae-Nae.” She then asked “What does inset day mean?” I explained it was a day when children do not need to go to school. She knew the answer to it she just asked for reassurance that there was no school for her.
She got her breakfast and then went back to her room to play. On the way back to her room I was on my way to the bathroom to get ready. She came to me again asking “Is it inset day today?” At this point I refused to keep answering the question. I told her I had answered several times this morning and the answer doesn’t change. However, she still needed to hear it once more. She pleaded with me to give her the answer she already knew, so just to settle her anxieties I replied “Yes it’s inset day, you go back to school tomorrow and if you need to check it any more go to the school’s website yourself because I’m not answering this question any more.” She smiled and went away but I’m pretty sure she went to the website to check there too but I went into the bath so I left her to it.
She is at the stage where school attendance is so important to her as that is the message she hears, I wonder how many years this will continue..? JJ was the same though but more relaxed about taking time off when he is poorly. He never used to like missing school under any circumstances. One day the school was closed because the heating had broken down and both children cried for hours. Lots of other children were out playing and rejoicing but not my two, that was their biggest nightmare. They liked the routine and structure. When they were at school and it was wet playtime and JJ was in reception he used to cry about that too. He thought that he had done something wrong and he was being punished, bless him. He didn’t understand that it raining meant it wasn’t a good idea to let children play in it. His reception teacher had to physically take him outside each time and show him how wet it was as to why children needed to stay in and it was not anything to do with good or bad behaviour. This went on probably until the end of year 1. No matter how many different ways it was explained, via pictures, tv programmes etc, he still didn’t get it until one day the light switch came on for him and he understood. He had very limited language at that point so he couldn’t articulate himself so he would spend most of the time crying. It used to break our hearts.
He was a happy boy but he was frustrated a lot of the time as not only didn’t he speak but his understanding of language was severely affected. He suffered from glue ear too so a lot of the time he couldn’t hear properly either. Every noise was amplified in his head and it used to make him scream and cry. The vacuum cleaner and the blender were big issues for him in our house. I would have to take him outside if MrJK needed to hoover. Thankfully, MrJK doesn’t have the obsession to hoover everyday like someone I know and love dearly lol, because if he did I would have had to take JJ out everyday. He was petrified of those sounds and they caused him so much distress he would cry for hours after too, so getting him out was the only solution.
When I look back on all of this and see him now, it’s like there was a miracle,  a complete transformation had occurred. Although the change was over time, there was a particular development with both of them when they reached aged 7. It was like something in their brains connected for the first time. I can’t explain it fully now but one thing we noticed was their bowel movements changed rapidly then, their hearing improved and anxiety around certain noises stopped suddenly. It’s something I will explore more in later blogs…Well I have to wet your appetite for more..!
Back to today… I took JJ to school and returned home to work from home as a garage were meant to collect my car for repairs. I waited in all day though and by 4pm they still hadn’t arrived so I called them and they apologised. I was a bit annoyed as I could have done some client visits but hey I managed to finish all my reports and start on other admin tasks I had which I need to tidy up ready for handover.
After work I had some music sessions with some awesome kids. It’s the highlight of my week and hopefully soon I can do more of it. Seeing children explore instruments in the way that they do and seeing them release levels on energy especially on the drums, fills my heart with joy. I’m so blessed to be a vessel for these children and give them the opportunities. The drummers in particular usually come in bouncing off the walls but by the end of the session they are exhausted and calmer like the drum has taken away the stress. But seriously when I feel stressed the drum is a good release.
JJ used to do drumming with me but he found it too pressurising as he just had the expectation that he needed to achieve results really quickly because I was his mum. He is quite goal orientated. I just wanted him to enjoy the instrument but he didn’t quite get that.  However I needed to do some recording for my website so I asked him if he would do a demonstration while I recorded. He reluctantly agreed but when he sat on the drum after he followed the sequence I wanted him to follow, he just started playing. I walked away so he could have his moment because he kept looking at me for reassurance which was making him focus on a goal like in his head he wanted me to acknowledge that he was doing something right but I didn’t want to do that. I just wanted him to feel the beats he was making and enjoy the release. He sat there for ages tapping and working on different beats. It was beautiful and I shouldn’t be amazed but I was. When he relaxes about it he is a natural. He has a good ear for sounds too. I came back in the room and gave him a blindfold that I use with my drummers to get them to learn where everything is without looking so they can also feel the beats. He put it on and wow! I thought I was gonna cry because he was making such a joyful sound. I need to find more time to give him these opportunities just to feel and not pressure him to want to learn but encourage him to use it for self-therapy.

When I came home Nae-Nae asked me if I can draw up some new behaviour rules for this coming term to help her re-frame from doing things that will cause her to be internally or externally excluded from school. She really wants this her last term in school the best term ever but she knows herself that the summer and the Autumn terms, the terms of new beginnings and change aren’t the best terms for her. We discussed some self management strategies and created some visual reminder tools. She asked me to make a copy to take into school too. She is used to me creating things to take into school now she even expects it. I had to stay awake to pick JJ from youth club so this gave me something to do to keep me occupied.
When it was time I collected JJ and his friend who JJ invites to social events the club runs and came home, bathed and bed. Another fruitful day.

Just a quick disclaimer… When I write these blogs I often have to mention establishments like schools, places of worship, my work but I never mention the names or ever mention the town in which I live. This is so I can be free to express without any repercussions. I have been bitten once… One day I wrote a blog and someone that knew me personally misunderstood what I wrote and as it caused discomfort that person contacted an establishment and reported me. But for the fact he/she knew me they wouldn’t have known the establishment to contact but more disappointingly, it was a misunderstanding that could have potentially affected the work I do with families and affected the positive relationships I have build up with particular agencies. I had to print out the blog and took it the establishment who then read it for what it was and all was ok. I wish that person just contacted me directly for clarification. The reason why i’m saying this is, if you read anything that doesn’t sit well with you please comment in the box below. You can do so anonymously and we can discuss it, or you can contact me via email. All details are on the contact page. If you know me personally, please respect that I am also doing this to give the reality of life so read it as a story in a book.  If you want to comment about anything else, please feel free to d

Thank you!!

Peace and love

MrsJK