Autism Awareness Month Day 16

Over half way through the month… wow it’s flying!

I have so much to do at the moment so I was up doing those admin tasks while the kids were finishing home work and playing. MrJK went food shopping as he does and came home and finished some housework. I had a booking which was cancelled and then another commitment but due to my workload I just couldn’t get there. I hate being behind with work and admin so until I feel in a good place I have to do the work.
I felt like I needed a bit of a clear out too in order to prepare for the new phase in life so I started doing that, throwing things away and clearing out the boot of my car. The boot of my car often holds the masses of my junk. I don’t dare bring lots of junk or unsorted paperwork into the house as it will not survive, so my car, my lockable filing cabinet and my handbags store it as they are the only places MrJK doesn’t access lol. Well he does try sometimes and I come home and scream so he is trying to step back a little so he doesn’t have to hear my mouth.
I felt loads better after I had de-cluttered. It really makes a difference to the state of my mind. Anything that doesn’t belong in the next phase of my journey needs to go now, so I have been sorting out those things too. Out with the old in with the new. This may sound harsh but there are people that were part of my journey in the past for good or bad reasons but they can’t come with me now and those that are meant to come with me will so I have to let go and let God. New season, different reasons.
JJ needed some things for school and I want him to take more responsibility for things he needs and choose them himself, so instead of going to get it for him like I usually do, I interrupted his game playing and told him he had to get ready and come with me to the shops while Nae-Nae stays with Daddy. I think he was a little surprised as he usually just gives me a list and I get it or I go to the shop and once I’m there I will FaceTime him to show him what’s on offer and he chooses that way. We do that with clothes shopping too. He is not a fan of clothes shopping so if i’m not buying it online I will go to the shops and if hes around I will call him for his opinion or I will just buy it because I know it looks good and my fashion tastes in my opinion are great. I think my children always look great in what I buy. If you know them and you do not agree, please remember to tell me. I’m getting better with constructive feedback lol.
He got ready and came out without a coat. It was dry at the time but I could see the clouds were grey. As I drove off I told him that although we are only going to one shop he should have bought a coat with him as its about to rain down heavily. He questioned “How do you know?” in a sarcastic kind of way. But at that precise moment the heavens opened and rain fell. He turned his head to look at me like ‘huh?’ I just smiled and reminded him that I have superpowers and he laughed his head off! I actually wonder whether the Almighty enjoys having a laugh with us cos the rain couldn’t have fallen at a more precise time. Literally, as soon as JJ asked how I would know, there it came. I knew it would rain at some point by the looks of the clouds but the timing just made it look like I really had that insight. JJ was very impressed!
We went around the store and it was lovely to see JJ push the trolley and select what he wanted. He usually has to share pushing trolley duties with Nae-Nae, one holding one end and one holding the other just so there’s no arguments. I also needed to get items for the club tomorrow so JJ took charge of that too and selected what we needed. I saw some things and was about to pick it up but he told me no lol. He reminded me that the other children never eat it and it so it’s dead money and what we have is enough and there will be less wastage. Gosh I should take him shopping with me all the time as he helped me save money.
Dinner was being cooked when we got home so we waited for it then ate and we all returned to our stations. After a few minutes I had to break JJ’s playing time again as there was a report I needed to do with him for his annual statement review which is now converting into a Education Health Care Plan. I needed his views on his progress and further support needs. I knew this would be an emotional experience for him as I needed him to be totally honest about his needs for support. Although he is doing brilliantly there are still things he needs which sometimes he doesn’t ask for because there’s an element of him that doesn’t like to stand out. We also had to explore the things he didn’t like doing which may be having an impact on him reaching his full potential. When we discussed this, he got a bit upset but I reminded him that gosh he is like a walking miracle but we all are still a working progress so perfection is far off. It’s ok for him to still have certain difficulties and certain needs and it’s our job to work those out and find ways to help him either manage it or overcome it. I reminded him of his story so far and praised him for his achievements and explained that this plan is not designed to trip him up or make him feel bad but to help him reach the goals he has for himself and what we have for him. However I must admit watching him get emotional pulled on my heart strings too but I held back the tears for his benefit.
Once we had worked on his views I let him go back and play so I could work on the parents views which were similar but I had to go little deeper and make further requests for things I believe will help him even more. What he is getting is working well but there’s always room for improvement and I’m not one to settle for good if excellence is in sight. Please don’t get me wrong the support he gets is amazing as it has brought him this far but as he is approaching GCSEs I think there is a little more that we can all do to help him succeed to the level he wants to.
JJ wants to go to university but he admitted that he was worried that his grades alone won’t be enough to get a place he wants because there will be lots of people with equally high grades that would want the Uni place he wants so he is going to have to sell himself in an interview. He acknowledged that speaking aloud in groups or people he doesn’t know isn’t one of his favourite pass times and he still lacks confidence in some areas of communication so he wants opportunities to help develop that skill even though he doesn’t currently enjoy doing it. I had some ideas which I noted in the parents views. I read them to MrJK to check that I had captured the views of both parents correctly not just mine and he was happy with it so one down. I have to do a similar report for Nae-Nae tomorrow but not for an annual review. I did think I could do them both in one day but no, one alone is emotionally draining.
Nae-Nae entered my room as I was tidying up my notes and there were some guidelines for the plan on the floor that she picked up and started reading. As she read it her face dropped and she said “Mummy I don’t have special needs.” Nae-Nae isn’t in the same place as JJ in acknowledging the diagnosis and accepting she has some needs. She does not like the label of it but it’s mainly because of her fascination with rare conditions and medical science, so she doesn’t like to identify herself with having things like that and she is very conscious about difference and not wanting to be different.
I had to explain it in a way that she understood but not just say “Yes you have got special needs and this is why…” I suggested that the term special might not be the best word for it and to be honest it’s not my favourite word to use to describe it. I explained that needs can also be defined as characteristics and everyone is made differently with different characteristics and there are things some people find easy to do whereas others might not and some things make some people sad and that same thing can make other people happy. So far she was with me. I had to give her life examples of some of her friends at school and I started with them and she joined in by saying a particular person doesn’t like doing homework because they are lazy. I suggested that maybe they aren’t lazy but they have a characteristic that doesn’t make doing homework easy or enjoyable in the same way she does. She smiled. So I took it to her and reminded her of some of the things about her but I did it in an american accent from a point of view of herself “I don’t like music playing at lunchtime in the playground so I have to go to a quiet area etc…” “I want to be the first person in school everyday and open the gate with the caretaker…” And so on… She smiled and gave me some more examples. I used that to say those are her needs which maybe different to her friends needs and some needs require more help which is why some people call them special.
Nae-Nae really tuned into this and it seemed like she really got it and was content with my explanation. It is a hard one and it’s not always easy to pitch it right so they don’t equally feel that they have some sort of disease but also acknowledge that they may need extra help beyond their peers in some areas of life and that’s ok as everyone is unique even those with the same diagnosis are different to each other.
Nae-Nae knows that JJ and her have the same diagnosis but she doesn’t respond well to the word ‘diagnosis’ because of her perception of what a diagnosis is in relation to her knowledge about medical science. She doesn’t like to have the ASD label attached to her name and if she sees it she will cross it out! She found a register book at a venue once and she shouldn’t have opened it but in the notes near her name it suggested that she had ASD. She hit the roof and got a pen and crossed it out. The adults around dealt with it appropriately and then I was called in after and I took it from there. However she should not have opened and read that book either so I dealt with her on that too.
It is something we are currently working on with her at home and today was another breakthrough moment as she bought into what I was saying without feeling negative about the way she was made. I know she was created for a beautiful purpose and I always keep reminding both children of that despite what the reports say about them now. One day it will all become clear. Everyone has a purpose in the place/state that they are and not ever one will have a transformation story but I believe that everyone will have the opportunity to fulfil the plan for their life even if their life on this earth ends in a way that we consider to be premature.
Nae-Nae returned to her room then returned a few minutes later stating that she wants to play Awari – the bean game with her daddy. Not with me but with her daddy. Apparently I had made some mistakes with the rules and daddy corrected it so she now knows how to play it properly. It was a mere state of forgetfulness as I hadn’t played it for a while. They had been playing it together everyday since we started playing it this week. I was sitting in the spot in my room where they play the game apparently so Nae-Nae asked me to move while she called her dad to come and play.
It was so sweet watching them play and MrJK wasn’t even letting Nae-Nae win on purpose but she was flooring him. Each game she won he gave her a reward and a smaller reward if they drew and planned to give himself a reward if he won but today he didn’t win a single game although they drew twice. Somehow this game is quite miraculous for Nae-Nae as I have never seen her play a competitive game with no anxiety and be so relaxed about winning, losing and drawing. She said she is going to take the game to the next charity club session that I run so she can teach others. I was also thinking I need to get one for her new secondary school for when she needs time out as seriously it’s like therapy to her. MrJK suggested that he’ll buy a few next time he is in Ghana.
MrJK and I chilled out watching BGT and this is a time when it’s clear that we are so connected and so in tune with each other. When we see something outrageous or funny in our minds we will both turn and look at each other on cue and there are no words needed to explain what we are both thinking. We equally are touched by beautiful pieces at the same time. We like different things but actually we are very similar in our tastes of a lot of things. When people say certain people were made for each other I agree. I didn’t understand this before but every year that passes I understand it even more. There is no one that I have met so far in life that is more suited for me and my journey. I may have learnt the ‘hard’ way but I still learnt.
I’m forever thankful for my blessings warts and all.

Peace and love

MrsJK