So tomorrow MO is having his next assessment. We have compiled a 4 page document of examples of his spectrum traits. It is awful having to write down all the things that are ‘wrong’ with him, all the things he struggles with and all the things that we struggle with. It isn’t nice having to write down these things but we know the more we can bring the more likely the consultant will help us.
Take yesterday for instance, we were meant to have the assessment in the afternoon however Thursday we received a letter stating it was moved. We had prepared MO for weeks slowly explaining, slowly pointing at the calendar to let him be aware that he would be coming home after lunch to go to a special place he has his hearing tests. we had prepared him as fully as we could, so to get the letter to say it had been postponed was beyond frustrating. So I decided we would go to my mums house after school yesterday. What a lovely time MO and the other kiddies had, running around, having fun. No one would have the slightest idea something was amiss.
Then today, from the moment he woke up we were paying for the slight change of routine. He woke me up twice during the night, now he generally wakes up in the night and I can hear him but he generally doesn’t wake me up, now this was either because he could hear BBG wake up (this is very unusual she has slept through since 8 weeks) or because he was unsettled. All I know is that at 7am the worst of it started. The bouncing off the walls, the odd noises he makes, the clenching and shaking of fists and arms, the winding his siblings up and hitting them, taking things that aren’t his, bouncing off the walls literally. Within the hour and a half of him waking up to getting in the car for the school run it had felt like I had told MO to calm down, to say sorry, to stop, every 10 seconds. He then got to school and we could tidy up the tornado MO left behind and relax hoping he would be calm when he got home.
During this school time, we watched BBG and did her home physiotherapy with her. She is slowly doing the exercises more and more and getting strength. However with every step forward there seems to be a step back and although she is doing a lot more head control, it is like her muscles just give up. She gets frustrated as she wants to sit up but can’t physically lift her head, so we have to hold our hand out like a prop and let her rest her head on our hand and then the bad feeding comes in. She won’t swallow correctly and can only suckle for a minute at a time before just refusing out of sheer tiredness. We will carry on her physiotherapy, at the moment for every 30 minutes of exercising her neck she spends about 3 hours recovering. Hopefully this recovery time will slowly decrease and she will slowly tire less. Just seems like she is doing so well and then she reminds us that there is something wrong. We were looking at car seats the other day as BBG is getting to long for her first stage one so thinking we need to get a bigger one that then converts as she grows. We researched it and the car seat that is ideal for her, that has the padding and support for her bad days, swivels round so we can easily get her in it and is just perfect is double-triple the price of one we were planning on getting her. I have no idea how we will afford this if our grant application gets refused, if this is the case we will ask the physiotherapist about the ordinary seat we found that we think will fit her needs – not as well but enough – I guess this is the start of everything, the start of the special equipment which is so expensive so finding alternatives, and figuring out what equipment we need the specialised versions and which we can adapt. The car seat is the one I keep changing my mind on as it is a safety thing…. I don’t know we will cope and we have a month or 2 to figure it out.
Anyway, Dad did the school run today, and MOs teacher needed to talk about his behaviour. Generally he can contain most of his behavioural issues at school, he does the odd MO ball, he generally is a dinosaur 90% of the time and the empathy just is not there but he generally behaves, but today he couldn’t, he continued on his spiral upwards of chaos. That’s one thing MO can’t do, he can’t calm himself down, once he has gone over a certain level of emotion (happiness, excitement, anger, frustration) he can’t come back down from it. So unfortunately the slight change of routine yesterday affected his schooling today, it isn’t the first and it won’t be the last time. It has just made me realise after school must stick to the same routine no matter what. At the moment he is sitting peacefully next to me, watching you’ve been framed. Guess what, routine is back and he is calm. At least tomorrow he should be calm. He will react to the assessment and having his school routine changed on Thursday so the consultants probably won’t see the change but we know Thursday will be awful for MO.
While Dad was at horse riding with BG, I was at home, SB was watching cbeebies alone, he didn’t want me with him as he is a big boy, he came and got me to tuck him in and read a bed time story and that was it, but all of a sudden I just broke down. Dad must have received about 10 texts in 5 minutes. I just went into overthinking everything. I was blaming myself for MO and BBG, I was blaming myself for SB and BG not having enough attention. I was letting Dad know I was scared, that I can’t cope any more. As much as I try to stay strong I still have moments when I just cry, times where I don’t think I am the best mum to my kids. Times where I look at MO and think if I can’t cope with the assessments how is MO going to cope. How is MO going to cope with secondary school when he can’t even deal with slight crowds, when I know that when he is older he will be very clever and if he uses his gifts of logic and building correctly he will be amazing but what about the years up to this point. The years where he desperately wants friends but he can’t deal with the fact that friends want to sit with you, they want to play with you. The years where teenagers and children aren’t nice to people that are socially different. The years where he has to deal with so much change, high school where his timetables change termly. He will get through it because we will make sure we do everything possible to help him deal with everything. At the moment we just have to take everyday as it comes, every day where he is bouncing off the walls, everyday where he is just angry and lashes out and breaks everything, everyday where he is quiet, everyday where he just sits and plays with his logic games. He will get through so we will get through. I think it bothers me and dad more then it bothers MO.
Anyway tomorrow is a different day, I will be a bag of nerves tomorrow but it will be fine. It’s just another box to tick at the end of the day. Now off to have my curry(Dad always treats me to a take away if I am having a rough day)