Siblings on the Autistic Spectrum

Growing up, I knew I wanted children, a family of my own where I could let my children know that they were loved and always be there for them (somewhat opposite to my upbringing).

I met Hubbie as a single mum, two became three, became four with the arrival of T and then five with D’s arrival. I felt complete.

Bearing in mind that T and D were 18 months apart, it was a busy time. I’d either be balancing one on each hip or smile as my little “pack” followed me everywhere, leaving behind a trail of Match Attak cards (in T’s case) or play food and playmobil characters (in D’s).

And then something unexpected happened, teachers at D’s nursery recognised within her first term that her speech, social skills and ways of doing things were far behind her peers, we investigated online ourselves whilst waiting for the first of many appointments and one word came up again and again – autism.

D’s official diagnosis came when she was 4.5 and T was 6, it was an unfamiliar path we travelled as we journeyed from grief (for the child we wouldn’t have) to fierce protection of our frightened little girl who suddenly had this “label”, one that she would always carry.

It was hard to explain to T about his sister, we took to saying that our brains were made of puzzle pieces and, with his sister, hers over-lapped in some places (areas) and had a bit of a gap in others, it seemed to help him, he’d see D melting down or becoming extremely anxious and say “that’s her puzzle piece doing that, isn’t it?”

(I used this puzzle piece scenario before I was active on social media and realised that puzzle pieces seemed to be used by a lot of autism organisations, it made me think “Jeannette, you’ve got this, now do more to get awareness out there”.)

There were times when I sensed that T felt embarrassed, for example if he’d be eating lunch in the hall at school and D was refusing to come in as she was over-whelmed by sensory issues, times when there’d be a sports day or assembly and I felt torn between the two, do I comfort my over-whelmed daughter or watch my son compete? In a way, it felt easier on T that D received her SEN statement and moved to SN school, we wanted him to enjoy school life without feeling over-protective towards his sister all through his school day, because he was.

When T was diagnosed with high functioning autism at age 10, it was more of a relief than a surprise, his traits were becoming increasingly apparent in public and however much he masked them during the school day, he was having issues with fellow pupils and teachers.

So, my determination to raise awareness and acceptance of autism became doubly so.

Having two children within the vast autistic spectrum isn’t always easy, at times I feel like I should have a referee’s whistle but that wouldn’t work, T would respond quickly (as his passion is – and always has been – football) but the shrill, sharp, sudden noise would terrify D.

I can’t say they’ve ever really “played”, whether it’s an attempt at a board game or a splash in the pool, T will always make it competitive, try and guide D into a contest and then get frustrated and annoyed when she doesn’t want to or melts down, it’s at those times that I hanker briefly for the traditional “oxo advert” family, the children all smiling around a table, eating the same food and cracking jokes, only briefly mind.

It’s not all doom and gloom, D might not “get” traditional jokes and humour but she absolutely loves “Keeping Up Appearances” and “Mr Bean”, even though she’s watched them so many times she knows exactly who will say what and when, slapstick obvious humour. T is more droll and more sarcastic in how humour and tone, he also does a pretty fantastic withering glare, which more-often-than-not is aimed at his sister, if he disapproves of something.

But, they have each other’s backs and are extraordinarily protective of each other, even if it’s not always shown.

T had a residential school trip in January and the only contact we had was via any pictures that were placed on twitter, any “is he eating? Blimey he looks thin and tired” thoughts were kept to ourselves as D seemed really pleased to see her brother was okay too.

So, there you have it, they might not always “like” each other, there are some days when they barely tolerate each other but that sibling protective element is there, it just doesn’t always show itself.

Love them both, so proud of them and the daily challenges they face x

• «Previous Post
• Next Post »