Autism Awareness Month Day 10

Happy Sunday again. Wow this part of the week has come around  quickly. Even though the days are lighter for longer it just appears that time runs faster at this time of year. It’s psychological though.
I woke up really refreshed from a good night’s sleep. After all that driving yesterday and waking up early I needed it. I was getting ready for church and talking to JJ reminding him that I’m taking Nae-Nae to a party after church to check if he changed his mind and wanted to come. It was a party of my friend’s twins who are a year younger than Nae-Nae so JJ just thought of young children and no one to hang around with his age so he declined. If I was running the entertainment he would have come in a work capacity to help me out. He’s good like that and I pay him a small allowance for those contributions.
I reminded JJ that it was a superhero party so the twins want all their guests to dress up. JJ responded with the most beautiful thing “That’s easy mum, you don’t even have to dress up just go as yourself.” He knows how to flatter someone. His future wife is going to feel as high as the sky! That was such a lovely thing to say and even in my modesty I was touched greatly that he recognised some superhero qualities in me. Ok I can’t fly but yes the almighty has given me a great level of strength.
However the superhero status does not always work in my favour. People often view me as superhuman because I responded in that way, so when I may have been low or needed help, people assumed that I’m ok because I’m always ok or I gave that impression. I probably showed that I didn’t ever need anything but that was because I wasn’t very good at asking for help either, at risk of being rejected. That was a real lonely place sometimes. Nevertheless, I learnt in the last year that it’s ok to show my vulnerabilities too and not be superhuman. The day after my step son was murdered I thought it was ok to go to work. I got there and I cracked. What was I thinking? Well I was thinking that there’s nothing I could do to solve the situation so perhaps just carry on as normal… Huh??? I know how silly!! My household didn’t object to me going to work either because equally, they view me as the one who holds everyone and everything up most of the time so how can I not be the motivation during this time?  I learnt a valuable lesson to be vulnerable to the Lord and not try and be in control all the time because there comes a time when those superhuman qualities I thought I had were meaningless. Super heroes get tired too!  I took time off work for a while just to because I needed to and that’s something I never ever do. I’m the one that would go to work half cut, shivering and coughing spreading my germs because I have too much to do and don’t want to let others down. It was a sad state of affairs too so when this situation happened I totally put life into perspective again and transformed my mind. Never again will I think it’s not ok to be vulnerable and never again will the people closest to me think that’s not ok for me to be like that also because the Lord is our strength not me!
I went to church and played the bass guitar during worship which was wonderful. I do love serving in that way. I got a bit lost in the sound of the bass guitar and went to a place in my mind beyond where I was. Music does that to me though. It’s always been a place to connect beyond here and it’s been very therapeutic to my journey.
During service I was on children’s church duties. There were a couple of new children and this is where my superhero qualities came into play. There’s one thing that most parents with children on the spectrum have or they develop and it’s hard to shut it down… It’s like a superpower. It’s what I call the ASD radar. The radar that gives you the ability to spot another child on the spectrum from miles. I don’t like to go round diagnosing other children but this radar can identify certain qualities that match the criteria. Instantly my radar tuned into one of the children so I responded to that child in the way that I knew would match the needs they had. After service I just boldly asked the parent whether their child was on the spectrum. Yes that could have blown up in my face but thankfully the parent smiled and confirmed it. I used this as an opportunity to have a chat and I explained that I have two children on the spectrum and also support other children. From experience I know that many parents are relieved when they know that someone else in that environment knows, but not just knows but really knows because they live it too. There’s less you need to explain to that person about your child in those instances. Even though all children on the spectrum are very different, many parent with children with additional needs may not know your child but instantly they can respond to your child in a way to match their needs as they are used to doing it with their own… Well I like to believe that it true anyway.

I rushed off home to get Nae-Nae and I ready for the party. I knew we wouldn’t be early so I explained that to her so she will be aware that other children will be there before her, however the main activities won’t commence until later. She seemed alright with that. She loves the twins. Even though she hasn’t seen them for years she always remembers them as their birthday is a day after hers.
When we arrived Nae-Nae clung onto me and she was really uncomfortable. I could see her face filled with anxiety, bless her so I took her inside in a quieter place for a while. She complained about the music and wanted me to turn it off but I reminded her that I wasn’t in control of the party and we are guests so the hosts will do what they wish. I reminded her that she was adamant that she wanted to come but we can also leave at any point if she’s uncomfortable. She wanted to stay but decided to stay inside for a bit. My friend noticed. Her twins are on the spectrum so she has that super power radar too. She gave Nae-Nae a present she bought for her and as it was something Nae-Nae really wanted this distracted her from the anxiety for that moment.
My friend wanted to take a photo of everyone in their superhero costumes so she asked if Nae-Nae wanted to come out to be part of it. I could see Nae-Nae wanted to so I asked to my friend if she could pause the music just for the photo then I know Nae-Nae will come out. She agreed, she knew why, no other questions needed. Nae-Nae bounced out for the photo because the music was paused but when the music resumed she remained outside. She was still a little uncomfortable but I knew it wasn’t just the music because she was looking round at all the other girls playing together and she didn’t know any of them. She had that desire to socialise but it was clear that she didn’t know where to begin.
We played some party games and as the first one was competitive Nae-Nae opted to be a judge instead of competing. This way she didn’t have the anxiety of winning and losing but this did mean she wasn’t in with a chance of winning a prize. Due to this role I could see her start warming up and losing some discomfort. Then my friend took her on the bouncy castle and it was going so well until a particular song came on. She ran off the castle like she was in pain. My friend quickly changed the song but Nae-Nae still couldn’t bear it so went inside asking me to close the door. She didn’t want to hear anything. We sat together on the chair and I hugged her as she started crying. I talked her through the situation through her tears. I just comforted her and reassured her that there’s no rush to go outside again. We can stay where we were for as long as she needs and if at any point she just needs to go home, she should let me know. We just sat there hugging for a while.
All of a sudden Nae-Nae overheard that they were about to play pass the parcel. Now she dislikes this game because she fears she won’t get a chance to unwrap. However, she remembered that prizes are given to participants so if she doesn’t join in any games she won’t have the chance to win anything. Through her tears she ran out and asked to join in. Thank the Lord, the music stopped on her as soon as she joined in. Now this wasn’t even orchestrated by my friend because she wasn’t looking but I think it was orchestrated by the Almighty. This was the turning point of the day for her. Nae-Nae opened a layer got a prize and her light bulb switched on. The discomfort left her. She played on the bouncy castle with other children, she laughed, she danced to the music, she did some karaoke. It was like a different child from the one just an hour later.
At which point I was able to relax too and have some fun. When she is uncomfortable one thing she also hates is watching me get involved as I love to do. There’s no way I was allowed to sing along to the songs or grab the microphone. However when she was happy, this was ok for me to do. So you know I hopped on the mic and started MCing. One lady came up to me and asked if she knew me. I hadn’t seen her before but I thought perhaps she had been at other parties of this friend. She complimented me on what I was doing and suggested when she masters her DJing skills she’ll recruit me as her MC. I just laughed but in my head you know I was cooking up a plan…
When it was time to go, Nae-Nae called me but noticed I was dancing away to one soca tune like it was carnival time. She was happy to let me finish as she found the swing at the back of the garden and was happy to play on that for a while. She came back and found me minutes later and picked up my bag. That was my cue, so we said our goodbyes and left. When we got to the car I told Nae-Nae how proud I was of her as she cheered up from the miserable place. She gave her own self assessment “I was miserable at the start but near the end I became happy and had fun.” She then mentioned something which I did identify about the day. “Mum it’s hard to make friends sometimes but I really want to.” I knew that’s what a lot of her anxiety was about as she looked around at all the other little girls playing happily together and it hurt her that she just wasn’t comfortable to just approach them and join in. This conversation led on to what will happen when she gets to secondary school and doesn’t know many people as there’s only two other girls from her current school going to her secondary school. We spoke about the children she might know from other places that currently go there or there may be some in her year but we just don’t know they are going there yet. She named some people she knows from church and the clubs I run that go there and she felt so much better that there are people she can find that she knows. I acknowledged that it might be hard to start with but she’s a loveable girl so it won’t take long for people to love her and want to be her friend. She was happy with that.
I am less worried about her making friends because I have seen it done. I worried massively about JJ as he went to a school where he only knew one other boy who got in via appeal so wasn’t placed with JJ. However three years later he has lots of friends and the other children value him so much that he was selected as form rep for two years running. This gives me a sense of peace that Nae-Nae will find her feet fairly quickly and also have a good circle of friends. I have faith for that. It’s her desire so I’m sure it will be made possible. Meanwhile she will keep attending the things I run outside of school as she has got lots of friends there.
I often see the media explain that children on the spectrum don’t have a need to socialise. Ok what probably happened was they observed one or two children who didn’t appear to have that need to socialise and there you go all children with Autism are like this… Err wrong! Some children maybe but not all. My two are the complete opposite. Sadly this is what happens with this diagnosis. Although it is so broad, everyone is still grouped together. This is one reason why I want to create awareness and tell my own stories because I guarantee you won’t find another child completely identical to JJ on the spectrum and I’m 100% certain there is not another Nae-Nae on this planet. Therefore, we need to treat every human being on face value and children on the spectrum are no different but actually their differences are even more profound so even more reason to respond to them within their uniqueness.
There’s seriously a different story everyday. I could literally do this all year round and every day will be different. As much as I love doing it, I’ll just stick to daily stories throughout April and then return to weekly and adhoc blogs thereafter. I would really value your comments and feedback so please feel free to post a comment. But if you know my first name because you know me personally, please don’t post it here because the admin team won’t be able to approve your comment but MrsJK is perfect lol. Thank you!

Peace and Love

MrsJK