Super Autism Mum

It’s been a tough week. He is going thru a phase just now saying “no spitting” then looking like he is going to spit, but then sucking it back in at the last second – though not always catching it on time and he actually does spit.

I have tried everything – I was saying nicely at the start, that’s horrible stop that, its disgusting. He kept doing it. I tried to ignore it. That didn’t work, he got louder and louder until I had to acknowledge him. I tried shouting at him to stop, which I felt terrible about, I hate shouting at him, but it didn’t work anyway! Now, as a last resort as I have reached the end of my patience, I will stop whatever he is doing if he does it. Take the iPad off him. Take his book or toy off him. Whatever he has in his hand I will take away from him. Last night he wouldn’t stop, so I put him to his bed an hour early.

He normally goes to his bed around 8.30pm so last night was 7.30pm – and he was still awake at 11pm when I was going to my bed!

We got new windows fitted yesterday, and due to them having to settle for 24 hours, we had no curtains or blinds up. The room was dark-ish, but the street light shone through. I was putting his lack of sleeping down to the room been brighter than normal. Until I got up this morning.

I got him up and when I put the light on, I saw that the reason he wasn’t sleeping last night. He had picked all the silicone from the bottom of where the new window was sealed.

I am already exhausted from dealing with the “no spitting” issue all week, this has pushed me over the edge. He is away to school now and I have spent the last 30 mins in tears.

Sometimes being an autism mum breaks you. Today I am broken.

It’s been an interesting few months to say the least! The coronavirus pandemic has had such a huge impact on everyone.

Back in March when we went into lockdown, we were so fortunate to have a run of great weather. We are lucky to have a garden and a big trampoline. We would have been lost without it. Our son needs to jump and we see a huge difference in him when he doesn’t get that release.

At the start, we stayed home all the time and we were in the garden for fresh air. But it got to the point that we really needed out. The restrictions allowed for an hour of outdoor excersize a day, but it was a few weeks before we took advantage of this. My husband was still working , though he was only working mornings, and I was working from home, so it was me and our son 24/7. Around 10am we went out a walk each day. It was quiet so I felt safe, and we went the same way each day which took around 40 minutes. I walked and he was on his scooter. I tried a few times to get him to go a different way, but he kept to the same loop each time. He was happy with the route so I didn’t push it. There was enough change happening so this was a bit of stability.

My parents didn’t see him for 3 months. Going for seeing him almost every day to not seeing him at all was a big shock to everyone. He asked for them alot but they spoke every day which helped.

The carers centre called us to make sure we were ok. I can honestly say we were great. I was reading on the Facebook groups that I am in, of lots of kids really struggling with the change in routine, but we settled into a new routine quite quickly. Breakfast, schoolwork, walk, lunch, schoolwork.

I thought lockdown was going to be really tough but it has actually been ok. Our son needs alot of attention and can be very demanding. It has been challenging at times, but overall things have went well.

I saw this online and liked it. No author name quoted to give credit.

Many months ago, my dad seen an interview with a man who had written a book about life with his autistic son.  My dad said it was a great interview and as a result, he bought me the book to read.  It has sat at the side of my bed for months as I just couldn’t read it.  The thought of reading it made me feel sick.  I guess it is in the category as me not being able to talk about my son’s diagnosis, I don’t want to read about another boy in the same position.

I have tried to read books on autism, but I find it all too hard to read.  I suppose it’s still me coming to terms with the reality of the situation.

I always read at night.  I have a kindle, but its not the same as a physical book and I am always at the library getting new books.  With the libraries closed just now, I plucked up the courage to read the book my dad got me.

I am not going to name the book because after reading this book, I feel like mentally I am right back to years ago and I have had to pick up my medication again to calm me down.  If I was the author, I would be devastated to think my book had had this effect on someone, hence me not naming the book.

In a nutshell, it is written by a father with a few chapters by the mother about their autistic son, from birth to now when he is around 19.

The part that has me sick to my stomach is when they say they know their son won’t ever have a girlfriend, will never have a job or be able to live on his own. Further along the book they talk about what will happen when they die with no other siblings or close family members to look after their son.  That he will end up in a care home looked after 24/7 by strangers.

It made me look at our situation, which is very similar.  We are a small family.  We have no other children, and my sister has no children.  So my son is the only one in the generation and all I can think about is how he will be alone.

As we all know, the autism spectrum is so vast and no 2 people are the same.  Who knows what the future will hold for our son.  Reading this book, if the spectrum was a physical line, this boy was at the far end and I don’t think our son is as far along as he is.

Our son is almost 8, and at the moment I am really concerned about the fact that he cannot read or write. I know this is what school is for and I also know he is very underdeveloped and not a typical 8 year old.  If I look at where he was a year ago, to now, I see a big improvement, so I just need to hope the reading and writing will come in time.

In the meantime, I have learned that I will never read another book on autism.

I am a big cinema fan. I love going to the cinema and escaping in a film. I always have. I love getting sweets and popcorn and just getting excited about what I’m about to watch. I would go to the cinema every day if I could!

The cinema has always been a big part of my life. Whenever I need a pick me up, I escape to the cinema.

Before our son was born we had a Cineworld card and used to go all the time. I’ve take loads of family friends kids to the cinema, and couldn’t wait to take my own son.

Daddy took him to the cinema 3 years ago to see Kung Fu Panda 3 and he done well. I didn’t go as we thought his first time would be best with just daddy as I would get too excited! This was before diagnosis. He stayed for most of the film but got too agitated so they left before the end.

We tried to go as a family a couple of months later, but we couldn’t even get him into the screen.

Any time we pass a cinema when we are with him, I always take him in just so he can wander around but when I ask if he wants to go in, he always says no.

The Sonic the Hedgehog movie trailer has been getting shown on TV all week, and he kept asking to see it. I said he would need to the cinema, and he said ok. This conversation happened many times over the week, so I checked for the first showing on Saturday and it was on at 10.30 am at the cinema beside us.

I asked if he wanted to go. I said they could go to the shops for a sweetie, and he could wear his ear defenders as sometimes it was very noisy he said yes!

So, off he went with daddy and for the next 2 hours I was so nervous.  What was happening?  Did he go in? Has he stayed in?  has he watched the movie?  has he been aggitated?  So many questions!

 

Finally daddy phoned to say he done really well.  He got a bit jumpy on the seat and kept turning round to see what was happening behind him.  He kept his ear defenders on the whole time but he did watch the movie and seemed to enjoy it.  at the trailers the new Trolls movie was advertised.  When he came home, daddy said to him “tell mummy what you are going to see next” and he said to me “going to see Trolls”  I asked if mummy could come and he said yes.  So proud of him today.

 

This was shared to our school support group page, I can’t read where it originated from to give photo credit.

When we got the diagnosis, my dad told me to tell my line manager and my Human Resources department that I am a registered carer now. But I just couldn’t. My parents are retired so I am lucky that they are available for me if I need them. I didn’t see any need to tell my work when I have them close by to support me. It’s still so difficult for me to talk about it.

Last week an email was sent out in work from our HR department detailing a new Carers Policy that was now in place. If we are a carer, we were to log on to our staff profile and tick the “Carer” box on our details page. I done that.

At my monthly meeting with my line manager we were chatting bout holidays. I let her know I was going to have an issue soon when my parents are away and I have no childcare, that I can’t leave my son with anyone. I didn’t expect to be having this conversation, and all of a sudden tears were rolling down my face! I wasn’t sobbing, but I couldn’t stop the tears flowing! I explained I was his registered carer that he has some issues and a diagnosis that I can’t talk about. I’m sure she clicked on to what is was when I said it’s developmental.

I did feel better after our chat, but I was also annoyed with myself. She didn’t need to know. Damn tears!!!

I told my work friend (who knows) what I had said, and she told me it’s ok to tell people.

I really don’t know why I can’t say it more. Embarrassed? Not wanting pity? Maybe it’s that I’ve not come to terms with it myself? Will I ever?

When we were attending the Glasgow Club gymnastics, one of the coaches told us about a gymnastics club within Bellahouston Sports Centre that had disability classes.

When the Glasgow Club classes didn’t work out, I always had the disability classes at the back of my mind to try at a later date.

Our son had been asking to go to gymnastics for a few weeks, so I called and arranged to go over to see the disability class.

I was really impressed with the set up, it looked like an Olympics training gymnastics room!

When the class for our son started, they let us take part to try it. It’s a 90 minute class, the first half is at the mats where they do some stretching and games. They then have a wee break and juice before using the apparatus.

It was a nightmare!! I was trying to get him on the mat to take part, but he kept running away over to the apparatus wanting to jump on the trampolines. I ended up getting quite upset and was glad daddy was there to take over for a bit to let me calm down.

Thinking about it now, I had taken a trampoline loving boy to a room with trampolines and didn’t allow him on them. I tried now and next, I tried explaining he would get a turn on the trampolines after stretches on the mat, but nothing worked. He just wanted on the trampolines.

It’s not the cheapest of places to go to. There is a joining fee of around £20 and an annual insurance payment of £19 plus its £20 a month for the class.

The coaches were very friendly and welcoming and encouraged us to come back, but I think for now we will stick to going to the trampoline parks.

I just saw this on a group page I’m in on Facebook and love it!

Photo credit unknown