Super Autism Mum

The department I work for do work experience talks in schools, so I sent them to my son’s school which is close to my work. It meant I had to tell them about my son incase the school said something.

Luckily, the two people that go to the schools I am good friends with, and actually one knew already as we socialise together and she has met my son several times. I just had to tell the other one.

I felt ok going up to his office, but the closer I got to his door I started to feel emotional. I told him it’s something I don’t tell anyone as I can’t talk about it – then the tears came! I told him and he smiled and said not to worry, the talk will be ok.

They visited the school yesterday. I told my son they would be in school, the teacher said he got very embarrassed and shy when he saw them. Even though he knew my friend would be there he still kept close to the teacher.

I came into work this morning and the other person said to bring my phone to his office, and he filmed a short video for my son saying he hoped he enjoyed the talk.

Some people are just wonderful.

Oh, here come the tears again!!

My cousin’s grandson was diagnosed with autism a few months ago. He is 3. I don’t really know this side of the family as they live away from us and we don’t see them, but due to a family illness recently, they had been visiting alot so I was seeing him regularly and chatting about autism and his grandsons reactions and also his approach to dealing with it.

He gave me his daughters email address and I forwarded on some course info, and we chatted a bit. I was conscious that it is alot to deal with and she may not be ready to chat yet, but I let her know I was here if she needed me.

Sadly, the family illness resulted in a funeral. We took our son to the funeral – there was no one to watch him – plus he was very fond of the person and, although he didn’t know what was going on, it meant alot to me to have him there to say goodbye. He was great during the mass, and at the cemetery he threw some dirt in over the coffin and said goodbye. I know he didn’t understand what was happening, but I explained it as best as I could, and he may understand and remember this when he is older.

The family all gathered at a social club afterwards, and the little boy was there. He had on a t-shirt that said “Autism is my Superpower” and was acting just like our son at 3. He was clinging on to his mum, and she had the Argos book which he was flicking through which was keeping him calm.

The mum was coping so much better than me. It seems her way of dealing with it, is to tell everyone about her son and being very open about it. Something I cannot do.

We are keeping in touch so hopefully I can be some help to her, even if it’s just to listen to her vent.

I’ve been on anti anxiety medication since around a year before we got the diagnosis, and I’ve never felt ready to come off them. I see my doctor every 3 months for a chat and my new prescription and at my last appointment we talked about reducing the dose. I was unsure but I was back this week and I got a prescription for half the dose. She said if I feel I’m not coping, I can take 2 tablets.

I’ve realised that I am coping with my son alot better now but I still struggle with my husband’s reactions. He doesn’t cope well when our son is having ‘autistic moments’ and I find dealing with him really hard.

So, I will just need to see how the lower dose is. It’s not something I want to be taking forever, so this is the first step in coming off them completely.

Wish me luck!

I go to mass every Sunday morning at 11am with my dad and sister. My husband and son used to come too. It was fine when our son was younger, he used to run down the side and it was ok, it’s a family mass so there are lots of kids. As he got bigger, we couldn’t get him to sit down as he was so used to running down the side, we decided it would be best if he stayed home.

We took him to mass on Christmas morning. I was armed with Percy pig sweets and juice and books to keep him busy sitting, but he was so engrossed in watching the choir and listening to the priest, that we didn’t need these. He sat at the front to see everything, and so many people commented afterwards on how lovely it was to see him and how well he done at mass.

It’s the same people at mass each Sunday sitting in the same seat, which always amuses me. I have been talked into doing the collection each week, so everyone smiles at me and a few extra people chat a bit more after mass.

Yesterday after mass, a woman who I see every week with her husband, daughter and granddaughter, came up to me and asked how my son was doing, asking how old he was now. I said he was great, now 6 and a half, how did that happen?! She brought her daughter in on the conversation. She said remember my son was the wee boy who ran up and down the side. I said that’s all he wants to do, we struggle to get him to sit for long periods. Then I said it – he has been diagnosed with autism. Even as the words were coming out my mouth I had so much fear saying them, and couldn’t believe I was actually saying them. I drove home almost in tears, so much emotion going through me. Almost 2 and a half years after diagnosis and I finally said the words. My doctor will be proud of me!

When my son was younger he had alot of frustration with his lack of language. It didn’t help us that alot of his words sounded the same; purple, apple, tumble. He got so upset when we couldn’t understand him, but the second you said the right work, he calmed instantly. It still happens, but he doesn’t get quite as upset as his skills at telling you what he is saying has greatly improved, he will gesture and sign and we are learning how to read him too.

Communication is not all about speech.

We have seen a huge improvement in this since he started primary 2. His speech is really coming on but also his communication with us in gestures is fantastic. We are having fewer and fewer frustrating meltdowns now.

A few weeks ago it was daddy’s birthday. For night time I had picked up crisps and sweets to have a wee party. I said to our son, ‘will we have a wee party for daddy’s birthday?’ he said yes!

I went into the kitchen and put nibbles into wee bowls and brought them out and we had a lovely wee night just the 3 of us.

At the weekend I asked our son, what will we do? He said ‘a wee party’ ha ha. Ok, let’s do it!

Further to the Lego Therapy course, I bought a couple of Lego sets from eBay. I didn’t want to pay too much just to get him started. I bought 2 house sets and made them up. One was hinged so could open and close, the other was a 3 storey house with outdoor pool and trampoline! I tried to get him to help me make them, but he wasn’t interested.

Given that autism means imaginative play is difficult, I know he wouldn’t play houses with them, but I was glad to see him pretend jumping the figures on the trampoline. It’s a start! He liked to carry the hinged house and open and close it, but he didn’t look at the other house.

I saw a rollercoaster set on eBay and bought that, thinking he may need the Lego to do something. This has been the best money ever spent! He loves it! He will put the figures on and off and spin the rollercoaster round the track:

Lego Rollercoaster

On the back of the success of this, I bought the Lego big wheel:

Lego Ferris Wheel

This was expensive but we felt we need to try things to get his interest in something other than the iPad! I had £70 of Amazon vouchers which helped with the cost. The rollercoaster was such a success we wanted to capitalise on this and create a funfare. It has been great seeing him engage with the Lego figures – even if it is just to pull them apart and rebuild them!

I am working on a ‘Holiday’ page with information of the holidays we have been on and challenges we came across. I could split this into pre and post diagnosis, not that our son changed, but our handling of everything changed.

I live for my holidays, always have. Although accounting was what I wanted to do, I didn’t want to go to University. I just wanted a job, to get money, to go on holiday. I ended up, talked in to it by my dad, going to college which was only 2 years. I was the only one in my class who then didn’t go on to University but I am not a studious person at all. I have recently returned to studies and completed a professional accounting qualification. I was talked into it by someone in work, but I’m glad they did.

We have a holiday booked for July and it is a 4.5 hour flight. He has been great on flights so far, so I’m not worried about it, though this will be the longest flight he will have been on other than when he was a baby.

I can’t wait to take him to visit family in America who haven’t met him yet. We are planning Florida next year and hope that family stateside join us. Then, the world is our oyster as they say!

I just need to realise that it will take us a bit longer to do things. We need to wait till he is a bit older before doing longer flights.

An idea that came up at the final meeting of the preschool placement, was the idea of having a sensory box. Our son likes to chew things alot and puts pretty much everything in his mouth, and he likes the feel of things, in particular the reversible sequins. He loves moving them back and forth.

Preschool suggested having a box of sensory items that was readily available to him when he needed sensory relief.

For his birthday in July last year, I made up a box of items I picked up on Amazon and eBay and also some bits and pieces I picked up from Home Bargains. You don’t need to spend alot, I didn’t. I put them in a gift bag and he loved it! I done the same at Christmas and will do the same for his birthday this year.

Here are a few ideas:

Our carer’s centre ran a Lego Therapy course tailored specifically for ASD. I was intrigued by this, so put my name down to attend.

It was ran by a lovely woman who has set up her own company doing this. I thoroughly enjoyed the course, who wouldn’t enjoy a morning of Lego!

Our son wasn’t interested in Duplo, in fact I have just recently sold the 3 sets he had on eBay as they were brand new and never looked at. I am very keen to get him interested in Lego as everyone loves Lego.

The course told us how it can improve their focus and help with their imagination, something that people with autism struggle with.

Game ideas:

• Make a Lego target for Nerf guns to hit off
• Spot the difference – make 2 shapes/pictures with a difference in one and find the difference between them
• Spot the difference – take a photograph of a shape/picture then make it differently and spot what the difference is
• Make your own instructions – take photos on the iPad to incorporate the iPad into play with Lego
• Make 2 identical boxes of Lego pieces, but have one piece missing from a box, engage by saying “your blue piece is missing, would you like mine”

After discussing game ideas, we were split into groups of 3 and asked to name ourselves:

1. Engineer – the person with the instructions who tells the supplier what brick is needed
2. Supplier – the person with the Lego pieces who gives them to the builder
3. Builder – the person who puts the pieces together

We then had to work together to make the Lego items, in our group we had a house, car, dog, table and chairs to make.

I started as the builder then moved on to being the engineer. It was really difficult to describe the bricks to the supplier:

• Flat white one row four dots
• Thick green two rows six dots
• Blue four dots on top and slant to the left

Try this – it’s not as easy as you think it will be. But we managed it, and it showed us how difficult it can be following instructions from descriptions just like our children do.