Autism Awareness Month Day 23

Today I decided I needed to chill and lay in bed for as long as possible. MrJK was up and out around 6.30am to do the food shopping. He likes going early in the morning as he states that the fresh items are put out then.
As he left I rolled back over with the intention of shutting my eyes for a bit but then entered Nae-Nae asking for soft boiled eggs. I reminded her that today was Saturday not Sunday and I usually make it on Sunday. I was trying to make her inflexible just because I was lazy. She wasn’t buying it though and told me she doesn’t have to have it on the same day of the week all the time. She told me! So I told her to give me 10 minutes and she agreed but got in my bed with me.
She wanted a hug and a kiss and after that she put her heavy legs on me. She needed that pressure obviously but I didn’t so I told her to please move her legs otherwise I will tickle her. She didn’t move so she was tickled. So she screamed with laughter asking me to stop so I told her she needed to move them for me to stop, so she moved them and I stopped. She put them back on so I tickled so yes same thing laughter, movement, stop. Then repeat… After a while I was tired of tickling her so I just laid there and let her put her legs up. Her response was “Mummy my legs are up and you aren’t tickling me, why not?” She’s so funny! So she pretended she doesn’t like me tickling her but actually she loved it. That girl!
I made both kids eggs and toasted soldiers and ate some myself. We all went back to bed to eat there as we normally do on a Sunday. I don’t usually have Saturday mornings off where I have nothing to do so I made the most of it and remained in bed as long as possible.
MrJK came home but then went out again because by this time the other shops were open. I’m not sure why he didn’t just wait until 9am in the first place and go to the trainer and clothes shops he wanted to go to and then buy the food on his way home? Actually I do know why he didn’t wait. It’s going against his usual routine…
While he was out the second time I took the time to prepare for worship tomorrow. I am leading worship in church so I spend time meditating and hearing from God as to what songs to use. I have a song folder that needed sorting first so I had paper all over my bed. Enters Nae-Nae with a crafty look on her face. She went over to the fan that MrJK had just bought down from the loft and attempted to plug it in. I wouldn’t let her as I don’t like her plugging things in at the moment but because I was surrounded by papers it was hard for me to move. I told her it’s not hot enough yet but she said she just wanted to test it. She seemed so interested in it too. She then said “mummy please I need to do a prank.” Silly me didn’t quite understand what she meant but in order to have peace again I knew she had to do it and then go. I called JJ as he is older and able to plug things in sensibly, so he did it and left her with the controls. Then came the prank… She pointed the fan towards my bed, turned it on and watched all my song collection fly in the air all over the place. She laughed her head off as she watched me try and save everything. I had just put them in an order to re-file and everything. I had no idea she meant she wanted to prank me and I just didn’t click and walked right into it.
When Nae-Nae was satisfied that she had caused chaos she switched the fan off and off she went to do her homework and left me to clear up. I have really lovely children don’t I? It was funny though and I would have laughed if she had done it to someone else but as I was on the end of the prank the humour was less. However, feel free to have a good laugh at my expense.
After a few minutes, I could hear Nae-Nae asking JJ to help her with a maths problem. It sounded like he was giving her a method to work it out but because it wasn’t the way she has been taught she thought he was wrong and was getting quite annoyed with him. Poor boy was just trying to help her. It’s not his fault that methods for working out maths problems have changed since he was in year 6. Nae-Nae got so annoyed that she just went for JJ and I could hear the screams and the fighting.
I left them to it for a couple of seconds as I knew JJ could handle himself but it wasn’t stopping so I called JJ to try and just remove himself from there and come to my room and let her calm down by herself. He did that and she chased after him with objects in her hand throwing things. She threw a cushion at him and he blocked it. I put on something from YouTube on my phone loudly to distract her. I could see her trying to come out of it but then still trying to continue the fight. She then went for my dressing table and took one of my perfume lids and threw it across the room just missing his head. I had to intervene at that point as she was taking it to another level. When I got near her she tried to go for me so I restrained her gently just by holding her wrists gently with my thumb and finger around them and placed them by her side. She was still able to kick but not properly as she needed her hands up for balance so I blocked the attempted kick with my leg.
I just stood still in that position until she calmed down. I walked with her to her room still holding her wrists gently and sat her on her bed to talk to her. We discussed what the issue was and how she dealt with it and how it wasn’t appropriate. JJ didn’t deserve that treatment as he was only trying to help her and if she behaves like that in future he won’t be as willing. I told her to apologise to him so she did and he accepted it with a hug, bless him.  She explained that the work was too hard and she needed more support. I asked her why she didn’t call me. She explained that I was busy picking up the papers from the prank. Hmmm. She knew that she caused chaos and as I was tidying it up she didn’t think she could call me. Interesting…! I explained that the prank wasn’t very funny (although it was) and it did cause chaos for me but she could have still called me anyway.
We sat together and worked out the maths problem. She showed me the method she was taught but the issue was she had forgotten one stage of the method so she knew she wasn’t getting to the correct answer. I googled the method she was taught and good old Google there was the completed stages. This triggered her memory and she was so happy and continued. I sat by her for a little while until she felt confident again. Then I went back to finish preparing for tomorrow while there was calm.
When MrJK came back I jumped in the bath and got ready to go to an event for women at church and then do some shopping for the art and design club on Monday evening. The other staff had some brilliant and wacky ideas for it so I just needed to get the equipment so I decided to take one of them with me to help. We had fun at the event and on our shopping trip.
We bumped into a man who was out with his children on their scooters. I know one of his children to be on the spectrum and he has currently pre-verbal. I don’t know why I felt extra touched by the fact that dad was out with the children but I was. He reminded me of MrJK. Just like I said yesterday about families from my ethnicity not always willing to accept support, from my experience watching men from my ethnicity being so hands on with their children with special needs is not common sadly. A lot of them leave it to the mum’s mainly. This might be a cultural thing too. I watched the dad for a while and he was so good with his boys. He looked like he totally get it. It just touched my heart. I gave him a leaflet for one of my charity clubs a few weeks back but I hadn’t heard from him about that but at the same time I didn’t ask him as he was busy. I know if it’s meant to be, there will another opportunity.
When I got home, I noticed that MrJK had bought himself some nice new trainers and plimsolls. I joked with him asking where was mine? He opened one of my shoe cupboards and showed me why he didn’t think to buy me anything. Ok my bad, I have enough footwear and it’s overflowing. MrJK likes the way I lace up trainers so they were left on the floor waiting for me but he didn’t say anything but when he left the room I thought I’d be nice and just do it. While I was lacing them JJ entered the room to ask me something and he stopped and was intrigued by what I was doing. Now…for JJ to be intrigued with laces is a big step.
Laces caused JJ high levels of anxiety. The thought of them makes him panic. This is because we spent years trying to teach him to tie his shoe laces. We bought lace training tools, we tried lots of different methods but his fine motor skills were severely delayed that he just couldn’t move his hands in the way that was needed and hold the laces at the same time. We left it for a couple of years, tried again with all the different methods still it wasn’t happening and he was getting really distressed every time. We would have to buy shoes and trainers with Velcro or slip on shoes for school so that he could manage but if a pair of trainers that he really wanted for the weekends has laces I would thread them in such a way that he just needed to tuck them in or MrJK or I would tie the laces for him. As he gets older he finds it more and more embarrassing for his parents to bend down in public to help him tie his laces so he would only use the tucking in method or we just have to buy footwear without. This can be quite restrictive at times especially as he likes a particular style of trainer, the basketball type and to get them without laces, doesn’t happen often.
Anyway, as JJ was looking at what I was doing he said he knows how to thread the laces he just can’t tie them. Well I’ve never seen him thread laces either so I asked him to show me by bringing one of his trainers with laces. Without hesitation he did, which like I said is not something he would ever want to do. I took the laces out and threaded two holes while he watched me then I asked him to take over. His coordination still wasn’t great but he was managing it in his kind of way.
Then something just dropped in my mind to ask him to tied the lace. I hesitated at first because I imagined the stress it would cause him just mentioning it. So when he finished threading I told him I would tie the lace using the easiest method and he should just watch me. I told him just watch that’s all. I explained the steps as I did it and did it very slowly. When I had finished I asked him if he wanted a go. He answered “No thanks,” and started to look all nervous. However I just untied the lace and tied it again slowly while he watched me. I praised him about threading the laces as he has never done that before in my presence. He smiled. I asked him again if he wanted to try once and if it didn’t work for him that’s it I won’t make him do it again.
OMG he agreed and slowly picked up the laces, I could hear his heart beating faster. He looped one side, then looped the other side, crossed them over like I showed him, tucked one loop in the gap where I told him to place one finger and then pulled it through. OMG!!! He did it!!!! His little face was just a picture!!! I wanted him to totally believe that this wasn’t a one off and I gave him a suggestion on how to improve it slightly. He listened, took the other trainer and tied a perfect knot. I thought I was going to cry. He looked like he was going to cry too so I hugged him! It had only taken 14 years… but he did it!
I know this is something he feels so bad about not being able to do and he is a little ashamed about it and he wanted to conquer it one day but he never thought it was possible. Today something just connected and it’s clear that his motor skills had improved somewhat so he was able to move his hands in the way that was needed. I tell you I was ecstatic. That right there was a breakthrough. This means we won’t have to be restrictive in the shoes we buy. OMG it was like a weight that was lifted. It will also help JJ’s confidence and self esteem. It might be such a little thing to others but trust me this is life changing.
I was on a roll and told him, maybe it’s time to tackle the bike too. He looked horrified! That’s another thing he just couldn’t connect with but its restricting him as his friends can ride a bikes and he isn’t able to go to the activities he is sometimes invited to do because he can’t. He felt so bad that his little sister can ride a bike and he couldn’t. He doesn’t want a three wheel bike to go out with us so when we ride he is on the scooter. I know it really gets to him but I don’t make an issue of it. However I know deep down he wants to do it.
I encouraged him some more and told him how proud I was of him for conquering the laces. I told him that he is a conqueror and anything he wants to do he should be able to do it and if it means having to battle with it and conquer it, that’s what he can do with our help. I told him he doesn’t have to do it now but it was clear that his motor skills have developed so it will probably be a lot easier for him and if it’s not, that’s ok we can try again next year. He smiled and agreed.
I thought it will be a bit much to do it today so I thought I’ll plan towards it just not tell him the day just yet as he will be anxious about it. I was just so happy he overcame the issue with the laces. I took a picture of it to remind me and he said mum don’t post it on Facebook. Aww bless him! I totally wouldn’t do that to him either but this blog is secure as I don’t confirm his identity but if you know us then I know you will totally keep this confidential and not go and congratulate him as he would be mortified. It made my year I just couldn’t keep it to myself. Besides I want you to understand the reality of life for us.

These children have to go through so much just to overcome some things other people may take for granted. JJ is a real sensitive soul and having to watch people do something effortlessly that he finds so difficult isn’t easy for him. He put it at the back of his mind but seeing his face when he did it showed that it totally meant so much to him to be able to do it one day. I’m totally crying right now as I type this.
My children have come so far and with God’s help they will be all that they want to be. Not what I want them to be but who they want to be themselves. I will support them in whatever that is. Not all children will be able to get great GCSEs, A Levels or go to University and if my children’s purpose isn’t to do these things then I will totally support them in whatever God has for them but if it is their purpose then again I will totally support them and not tell them that they can’t! All things are possible!

Peace and Love

MrsJK