Month: April 2018

I was shown this at one of the courses I went to, and I think it is a brilliant example of how the autistic mind works

The Sally Anne Test

I started this blog as I was going through a hard time with my son. I thought, there must be other mum’s out there feeling like I do. Maybe by doing a blog (if anyone ever reads it lol) they will see they are not alone. I have hardly told anyone about the diagnosis – I don’t know why. I just find it very hard to tell people. I don’t want them to think he is anything but perfect I suppose. Maybe I am embarrassed, I really don’t know. He is very tall, which doesn’t help when his speech is so poor, as it makes him look a lot older and that comes across worse. I just explain he has developmental issues – that’s not a lie.

He has been in a great wee mood the last couple of days. We are noticing his speech is improving and he is turning into a wee comedian. He makes silly noises and when we laugh, he does it again or something similar just to make us laugh. Though we can’t make too much of a fuss of him. He HATES that. He gets very embarrassed and very quickly becomes very anxious and agitated.

His teacher has told us to get him into drama classes as he dramatizes everything. We notice that too. He copies things happening on TV, or poses on photos or pictures.

It’s been a good few days, let’s see how long it continues!!

Before I had a baby, my mum always said that it was my responsibility to look after it.  In her generation, you married then gave up your work to look after the children.  That’s what she done, and expected me to do the same.  Then my son arrived and my mum couldn’t wait to get her hands on him!  She said these days girls go on to college and university and get lots of qualifications they shouldn’t give up work when children come along! Ok mum, you can have my son while I go to work!!

Initially I returned to work 3 days a week, building to 4 days after 4 months.  Having a Wednesday off was fun, we would go to softplay or just out a walk and I enjoyed being with him.  It’s all I ever wanted.

We got the diagnosis in the October, almost a year before he started school.  Things had become hard work with him. He was and still is, very much a mummy’s boy.  He can be very clingy with me and it can be draining.  It is getting better now – thanks to the iPad!

So when he was starting school, I rearranged my shifts in work to be able to drop him off and pick him up from school every day, working every day but shorter days.  When we got the language unit placement, the arrangement is that a bus picks him up and drops him off.  My mum advised me to continue with the shifts I am currently on and keep my Wednesday off.  What??!!!  My mum advised this??!!  The woman who initially wanted me to give up work and look after him!!

It was the best decision.  I have had a few fun Wednesdays where I have gone to the cinema, or a wee day shopping.  But mostly I just need a day’s break.  I do feel that I have not had the benefit from it yet – and it’s been 8 months!  I spend my Wednesday going to the supermarket or going to shops to pick things up, or going to the doctors.  When what I really need is a day at home just pottering about.  Maybe next week!

It all started last week when our son had an autistic moment, and my husband shouted at him to calm down. We tried to go into town but he was having none of it. He got out the car then started getting really anxious. I knew straight away it wasn’t going to happen, and so did my husband, but husband isn’t coping well with these outbursts and said “we can’t do anything anymore”. I remained quiet. It takes me all my energy to deal with my son, I can’t deal with a grown man too! This led to a full blown argument when we got home. I won’t go in to all the sordid details, but I’ve been feeling really low since.

Is this my life now? Firefighting constantly!

Husband gets annoyed with himself for acting that way. But it’s getting more and more regular. Our son is having more and more autistic moments as he is getting older and becoming more aware of everything.

A friend in work I was talking to yesterday messaged me last night to ask if I was ok as I was a bit flat and not my usual self. I thought I was hiding it well lol! She is one of the very few people who know about the diagnosis.

I still don’t feel myself. I can’t put it into words. I feel down and on the verge of crying and I just feel like being on my own.

Yesterday at lunch time I went to a coffee shop myself and just sat staring into space. I needed to be alone.

For someone who is a chatterbox, I just don’t feel like talking just now.

We watched a show last night about how the system is failing autistic kids. My heart went out to the parents crying out for help and put on waiting lists for months on end, or getting no support at all. One parent was told her son behaved the way he did due to bad parenting. That’s appalling!

We have been so lucky – so far! I was scared initially doing the autism assessment when our son was so young, but it enabled us to set up the right schooling for him and has turned out to be the best thing we done for our son.

After agreeing to the have our son assessed, I was so scared.  I tried to cancel it but the paediatrician said no, let’s do it. I’m glad she did. It was my fear stopping our son getting the help he potentially needed.

I hope we continue to receive any help we need, we have been fortunate so far. I was at a course not long after we received the diagnosis, husband had man flu so didn’t make it! Everyone was introducing themselves and giving a short introduction, with everyone saying how they are struggling to get help and support. I was embarrassed when it came to me and said so, I said  we have been very fortunate with the support we have received. The course leader said not to be embarrassed, I was an example of how the system should work.

I am updating the pages on this blog with all the help and advice we have received and what I have done to get this in place.

Sometimes I have to realise that the past is in the past.  There is no changing what has happened, it’s done.  Learn from it and move on.

I find it difficult to do that. I go over every detail of everything, even things that happen 20 years ago! I find it difficult to let go and move on.

What if I had said that? What if I had done that? Would it be different? I’ll never know, so why dwell on it? If it happens again, do it differently for a different outcome.

I used to think I had no regrets. I said to myself, I done what was right at the time. But I have so many regrets. If I had lived my life differently would I be in the place I am now? If I had taken a different path, what would my life be like? Would I be happier? Would I have an autistic son?

My son is my world. He saved my life. I would do anything for him and give him anything but I wish I could make life easier for him and I can’t. That breaks my heart. I’m not always going to be here and I know he needs me to be. I pray as he gets older, the autism isn’t from the far end of the spectrum if that makes sense. Hell, if I am praying, I pray the diagnosis was an error – but I know that’s not the case.