Autism & us

 

I have 3 sons aged 19,9 & 4 (2023 edit they are now 26,16 and 11).  They go by the names Things 1,2 & 3 just like in The Cat in the Hat, a bit naughty but cute all the same.

I’m married to Shane he is our protector & defender, a brilliant Dad & Stepdad and we live in Cramlington in Northumberland in a detached house in a quiet cul-de-sac.  Sounds tranquil, peaceful maybe?  Not a chance.

In July 2011 our youngest son Reilly  was born (Thing 3).  A tricky pregnancy with frequent visits to hospital to treat Obstetric Cholestasis a disorder which only affects some pregnant women and causes jaundice, tiredness and extreme itching; really extreme I used everything from forks to toilet brushes in my quest to soothe the itch.

He was born a few weeks early and was absolutely perfect.  Beautiful in fact, still is.  He quickly became part of the furniture and life just rolled.

Reilly developed typically like most children.  He was walking before his first birthday but never really babbled.  He would smile and pay interest to everything around him, he would shout for his brother, ask for a bottle; ask to go to bed and of course he had defiant no.

Literally overnight it stopped and everything changed.  I remember thinking maybe he’s a bit off colour, maybe he just doesn’t want to talk today but days turned into weeks which have ultimately turned into years.

I would watch him constantly.  He hated playgroups, when we were out and about with the push-chair he would growl at people commenting on how cute he was.  He had no interest in other children whatsoever.  I was always making excuses not to take it personally, he did it to everyone.  Where had my placid, smiley little Reilly gone?  I knew.

He hated me singing nursery rhymes, I’m not the greatest singer granted but what child hates their Mam singing?  This one did!  I was forever saying Reilly what does the cow say praying for a moo but instead was met with nothing which led to is it his hearing?  Why doesn’t he turn and look when someone comes in?   Of course his hearing was tested and was perfectly fine. I knew Reilly was autistic, his Dad was more reluctant to see it. He would have many answers as to why Reilly behaved the way he did ranging from I didn’t talk until I was four he’s just the same as me to I don’t really like people either.

By this point it was pretty much set in stone for me and an appointment was made to see a specialist.

I cannot put into words the stress that entered our lives at this point.  Appointment after appointment with speech therapists, doctors, psychologists etc and as well as dealing with everyday family life our thoughts were now consumed, really consumed every waking minute with:

• how will he be in the future?
• will he ever talk?
• will he be independent?
• will he be able to work?
• will he live with us forever?
• will he be bullied?
• what happens when we die?
• can he go to school?
• where will he go to school?
• is it my fault?

His brother would continually ask why is Reilly so boring.  He doesn’t want to play with me.

The list is endless I could go on.

I was managing on approximately 3 hours sleep per night as Reilly didn’t sleep often crying for four hours at a time. Thing 2 was that distressed by the sleeping antics he was staying with his grandparents most nights.  On top of this I alienated us, finding it easier to stay at home than deal with meltdowns in public.  Saw less and less of friends and family and quickly felt pretty much alone and depressed (more so than usual). Childcare became rare other than my parents on occasions as no-one else felt capable to deal with his meltdowns and it really was and still is a pretty big ask.   My sister in law Kelly has been a great soundboard she gets it completely, been in my shoes and walked the miles.

This almost brings us up to current day.

I get a little more sleep these days Reilly takes melatonin to fall asleep (Melatonin is a hormone made by the pineal gland, a small gland in the brain. Melatonin helps control your sleep and wake cycles). I put this off for a long time thinking I was failing him, this was probably mistake number one.  You cannot function without sleep it is no good for you or your family.  It doesn’t always do the trick and he does sometimes get up at 3am but sometimes on magical nights I can get a whole 7 hours!

Reilly has been to nursery, mainstream school and is now settling into a special needs school.  I still haven’t heard him say Mam but i’m hopeful (2023 and he calls me Nan).

There are lots of stories to be told about our adventures and i’ll skip back to important milestones such as diagnosis and school in more detail so i’ll leave my introduction here.

I am not an expert in autism, we get by and are learning all the time but I do know how bittersweet it is to raise an autistic child like Reilly.    Sometimes it hilarious sometimes its soul destroying but one thing for sure is he is loved, we have his back and will do everything we can to make him happy.