Super Autism Mum

We struggled to have one baby, I never even thought about having another as we were so lucky that IVF worked for us.

When our son was around 2, I started to think about having another baby – assuming we would need to go through IVF again this time paying for it ourself. We had enough savings to do 2 rounds. I was almost 40 so time was against us. For around 2 weeks it was all I could think about. Then I just thought, we are so lucky let’s have a great life as a trio! We didn’t even try to have another.

It got me thinking, this was all before we had our sons diagnosis. He brings us so much joy, but we also have such a hard time with him and days that are so upsetting and frustrating for us and him, if there was a second child, how much harder would that be? What if the second child had a diagnosis too? I really don’t think, in fact, I know I couldn’t cope with 2 autistic children.

I have met many parents at courses I have been at. I have kept in touch with 2, from 2 different courses and we are now our own little support group. One mum has 2 kids, only the oldest is autistic. The other mum has 4 kids, only the youngest is autistic. I have also met another mum where all 3 kids are autistic, but most parents I meet only have one child.

Is there a fear of having another child after an autism diagnosis for your first child?

So in the tradition of bank holidays, DIY was planned! The kitchen was being painted finally, a year after it was fitted! My job was to keep our son occupied.

I planned a morning at the science centre then some lunch, this would keep us out the house for about 3 hours. I was debating whether to still go as it was a beautiful day but knew I had to get our son away from daddy and grandpa while they painted. He would just get under their feet.

Off we went with no problems. He LOVES the science centre so I knew we would have lots of fun. I charged the camera so I was really to take mega photos!

We parked, wandered in and paid then as soon as we got to the escalator to go up to the first level, he said no no no, I want to go home. He wasn’t overly agitated so I thought I might get away with pushing him a bit. I tried everything! No go! I asked why he didn’t want to go as he always has so much fun, he said he wanted daddy and grandpa.

I have a feeling my son takes after me. I have terrible FOMO – fear of missing out! Lol. I think he wanted home as grandpa was there and he wanted in amongst it.

We grabbed a bit of lunch then headed home to play in the garden.

I often get really upset when this happens as it’s a realisation that my son is different. Watching the other kids wander in and up the escalator knowing my son can’t do that today is hard to take, if we went tomorrow, who knows, he may go up no problem. It may just be the way he feels today. It’s frustrating as I know he will love it, but it is what it is and I have to just say, not today – got a refund for those wondering!

Today I didn’t get upset as I was happy to be going back to the sunshine in the garden!

On the whole, my son is ok with a change of routine. There have been a few times over the last couple of years that he has had a meltdown when something has changed, but overall we are lucky that he is ok most of the time when something changes.

One thing that does cause problems is bedtime! Daddy always puts him to bed. When I used to put him to bed, he wouldn’t let me leave the room. I’d try to go downstairs and he would be screaming. Even when I got downstairs, we would have about 30 minutes of him shouting before he eventually tired himself out. Daddy then stepped in and said he would do bedtime while I hid in our room until he was down!

This works really well – until daddy is out at bedtime and it’s back to me to do it!

I did try, but again when I tried to leave the room he would be shouting on me to go back to him. If I ignored him he would cry and I can’t leave him crying. I don’t agree with controlled crying, but that’s a personal opinion. I very much agree with you do what is right for you.

So, one night I had no energy for the constant running up and down the stairs till he tired himself out, so I just asked if he wanted to sleep in mummy’s bed. Oh yes he did! I can’t leave him though, so I just lie with the tv on and he falls asleep. Perfect! It also forces me to lie in bed and relax. Plus, truth be told, I love it!! I love when he sleeps in with me. The first couple of times it happened, I never slept a wink, but now I sleep fine.

Thankfully it doesn’t happen very often! We are too old and tired for social lives lol.

So the teacher wrote in the school diary to let her know if we wanted a homework task sent home once a week.  I think it’s a great idea!  Start now to get into the habit of sitting at the table to do his homework.  Trying to get him to sit will be fun!!

We are nearing the end of P1 and they are now attempting to write.  They have been going through the phonics learning letters, and from what I can gather from the diary, S and A are going well and they have started on T.

Sometimes we hear him singing to himself “a,b,c,d,e,f,g” then it goes off tangent a bit lol!  We get a p,q,r  then somewhere we hear z!  But wow, it’s amazing that this autistic boy who is so under developed for his age is now saying part of the alphabet.

Here is one thing I have noticed over the past couple of years.  Parents of “normal” kids expect their natural development.  Saying the alphabet at this stage of P1 would be normal.  I’m sure the first time it happened they had the well done moment.  When our son does something, we know it is a massive achievement and we are so proud of him. Even if it is just a simple thing that a “normal” child would do, we know if takes much more effort and determination for our son to do it.  This means we get such an overwhelming sense of pride that a “normal” parent may take for granted.

The best bit of advice I received was from our last Speech and Language therapist.  She told me this when I was at my lowest and really helped me see through the autism:

THERE IS NOTHING HE CAN’T DO, IT WILL JUST TAKE HIM A BIT LONGER TO GET THERE

I keep this in mind as it is true.  There is no stopping him.  The world he sees through special eyes is different to him but he will make it in the world, he will find his place.

I know everyone probably thinks this, but I really do have the best bunch of friends.  It’s taken until this age to know who my true friends are.  Those I can be totally myself with and tell them anything.  They give the best advice and listen to me when I need it.  Not necessarily to help me, no one can imagine what it is like to be an autism mum until you are one, but just to let me vent and get things off my chest.  You have no idea how much I need that at times.

Friends I would have considered very good friends don’t know about my son.  But why haven’t I told them?

I just can’t do it.

Sometimes it’s on the tip of my tongue to tell someone.  Or I am talking about something and I almost say something that gives the game away and I go into a total panic.

So, know that if you know about my son, that I count you as a special person in my life.

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.