Author: Super Autism Mum

Update

Its been a while since I used this – life kind of got in the way. We have been struggling alot with anxiety and we are back to the GP in a couple of weeks to ask for referrals. There is more to my son. I am certain he also has learning disabilities – he is 13 and still unable to read or write so we need a formal diagnosis of this as there are different avenues to access support if this is also on his record.

I am stressing at the fight ahead of us as I know it is not going to be easy to get them to assess for just learning disabilities – it is normally in conjunction with an autism assessment – but he was diagnosed aged 4 so this is not something that would have been looked at so young. We have already been told by school that he wouldn’t be assessed for just learning disabilities – they checked with the Educational Psychologist.

We will wait to see what the GP says and take it from there. Here we go again!

Its Never Easy

I’m having a tough day today. I worry constantly about my son, his future and what will become of him. Sometimes it overwhelms me. We have a very small family and I worry that once we are not here, he will be on his own. I wake up in the middle of the night worrying about this.

I can go days and be ok, then I read something or see something, or hear a friend saying what their child is doing, and realise he will never do that. I have even distanced from friends and their “normal” children as its been so hard to watch.

I wish I could be ok with this autistic life we lead, but i struggle so much with it. My close friend asked me the other day if I had spoke to a therapist about it all, and to be honest that has never crossed my mind. You are given the diagnosis and basically left to navigate the journey on your own, but maybe its something I need to look at. If i told anyone what goes on in my head they would be shocked! But maybe its time to open up to someone and talk through my concerns and try to come to terms with my life.

Makaton

Since his speech and communication has been improving, we have been using Makaton less and less at home. He will still use it if we are struggling to understand what he is saying and of course we still watch and copy Mr Tumble.

Makaton has been an AMAZING tool for us and has help stop many a meltdown. They still use it regularly in school and I still follow the Makaton page on Facebook and receive emails from www.makaton.org

I have noticed that since we have stopped using it so much, I am forgetting it all! It’s something you need to do daily to keep it fresh in your mind. The good thing about Makaton compared to British Sign Language is that Makaton is more simple and obvious so if I can’t remember the official Makaton sign, I try to sign as best I can, an hope that I am not too far off!

Chewy Tubes

So, chewy tubes have been so successful that one is demolished already! This just goes to show how anxious he is, one side of the blue one is completely chewed that I have had to cut it once already, now need to cut it down again!

The red one is worrying me as he keeps twisting the long bit into the top part and I think it may eventually snap off 🙈

Bought from Amazon red green and blue

Lockdown 3.0

This lockdown has been so much tougher. He has been really anxious. He doesn’t want to leave the house and spends the day jumping constantly. I bought a mini gym trampoline which we used to have years ago. It is helping. He is also putting everything in his mouth, even chewing his clothes. I bought more chewy tubes which he hasn’t need for years either.

He has regressed so much. We have taken so many steps backwards that I have lost count.

It was announced this week that Primaries 1 – 3 will go back to school in 2 weeks if cases continue to fall. But he is Primary 4. It was added that those with additional support needs will go back if it is demonstrated that there is a need. School are waiting on clarification on what on earth that means. Of course there is a need!

I have emailed the First Minister and Education Secretary for clarification but as yet no reply. I have asked that a phased return of school includes his unit and such like it across the country. There is only 6 in his class so social distance is possible.

We are also struggling to get him off the iPad. He goes into full meltdown when we try to take it off him. I use everything that worked before, giving him a time left countdown, having another thing ready for him like a book or snack. I have noticed a real change in his behaviour being on the iPad more. It can’t be helped alot of the time as I need to work, but it is becoming a real problem.

Hopefully once he is back at school things will improve as it’s hard work just now!

Communication Developing

Communication is an area people with autism have difficulties with. Our son is 8 now and is developing, at a very slow pace. He was non verbal until a couple of years ago. His speech is improving and we have less instances of us not understanding him now which is a good feeling. For the first time I see progression.

Understanding is still a problem. If I ask him, what did you do as school today? He just looks at me. If I ask, did you paint in school today? He will say yes, and then I check with the teacher if he did – often getting no as the answer! But I keep trying and hopefully he will understand one day and we will have a conversation.

A lovely moment happened yesterday. The school bus arrived to drop him off after school. He jumped off the bus and said “Chloe Mario and Luigi” (we are going through a Super Mario phase) then went into the house. This is normal, he jumps off the bus and runs in the house knowing I have a snack ready for him! But this time he came back out holding his Mario and Luigi figures and held them up for Chloe, who sits behind him on the bus, to see. He stepped on the bus again for Chloe to get a better look at them. Chloe was excited saying she loves Mario, and he had a big smile on his face. It was so nice to see him interact with a friend ❤