GUEST POST: ‘My brother has an intellectual disability’

Liz* writes….

“My brother (T) has an intellectual disability which became evident when his speech ceased to progress around age 2. He is now 16 and I am 18. The cause to this day is unknown; he has autism-like characteristics, a mild to moderate intellectual delay, and problems formulating sentences and articulating his thoughts. 

I was two when he was born; from what I remember we had a very normal brother-sister relationship and would communicate in our own ways as many young siblings do. I never recognized him as being different in any way until I got to primary school and realized he wasn’t going to be attending the same school as me.

My parents were very careful about how they structured our lives. They weren’t sure if T should be included in much of my schooling, and they didn’t want his disability to affect my life. They asked me when T was about to go to high school whether I minded him attending my school. I was all for it, but my biggest worry was that he would be bullied. In the end they decided against it, as my school didn’t have good facilities for coping with the special needs children. Like in many other schools, the kids were often bullied, and the teachers failed to fix the problem.

My parents always wanted me to have a normal life with T, and I truly have. Between the ages of 2 and 6 he was a bit of a handful. Tantrums were a daily occurrence, and due to his virtually non-existent speech many of these weren’t due to crankiness or anger, but more frustration in not being able to communicate what he wanted or needed. T and I were always together as kids, and from a young age I assumed the role of his carer when mum wasn’t around. Actually, even when mum was around I was still in my role, often prompting her to remind me that I wasn’t T’s mother.

I have dealt with my fair share of young bullies, and kids who have obviously never seen or been told about disabilities. Because T looks completely normal, many kids cannot understand how he could produce noises and sounds which do not make sense to them. They don’t understand how the tiniest hint of mockery or teasing in their voice or behavior can send T into an angry rage because he doesn’t understand.

My role of carer for T was one I took on willingly, and, I believe, subconsciously. I felt – and, to a certain level, still feel today – that I must always look out for him, assist him when buying things, and speak for him so nobody knows he has a disability. But when I do this, it isn’t teaching him anything. Still, it’s so tough standing right by him while he struggles to articulate what he wants to say to an ignorant teenager behind the counter.

Often mum and dad would come to me asking to interpret or try to understand what T wanted when he was young. We somehow seemed to understand each other without language, and this assisted his communication.

T was accepted into a wonderful special school at aged 6, and was taught to speak by a wonderful teacher who holds a special part in all of our hearts. Since then his development has soared. He has developed improved writing skills, exceptional maths skills, and is now at the age of 16 an accomplished sportsman playing with the Special Olympics (which I would recommend to anyone who knows a disabled teenager – the people who run it are truly fabulous and the friendships formed are so heartwarming).

Our development as siblings has been tough at times; we get along 99.9% of the time and are each others best friends. I have always felt a constant need to help and assist him, even with things he can do. A couple of years ago T became upset because his special school didn’t have ‘high school’ written in its name; he assumed because of this that he was still attending a primary school or a school inferior to high school, and became devastatingly upset. He expressed a desire to move to a normal school, at which time we had to explain to him that he had a disability, and that his school was the best option for him. It was by far the hardest months of our lives as I watched my parents struggle to know whether they had made the right decisions.

We all cried and cried at how tough the whole situation was and how much T just wanted to be normal. We never knew that he thought he was different. Was he comparing his life to mine? Was I responsible for him believing his life was abnormal? My parents assured me no, but I’m still not convinced. Soon afterwards, T made a nice large group of friends and became more comfortable at school.

We share joy in so many things and I’m so proud of his accomplishments. I introduce him to all my friends and they adore him too. Still, I have always been very picky about which friends I invite over. I am not particularly social now, nor was I as a child, perhaps because I was always anxious and caring for T. Mum always encouraged me to invite friends over but I didn’t have much interest, so the kids at school never had any idea my brother was disabled.

As I’ve got older I have often forgotten to even mention to my friends that my brother is different when they are meeting him. Most of the time they pick up on it, or I briefly explain it to them. Most people find it uncomfortable to ask but I’m quite at ease talking about it.

I never struggled to come to terms with his disability as my parents did, because I more or less grew up with it, and honestly can’t imagine him any other way. As a kid, though, I think I did struggle with the attention that he required. My parents were always very conscious of giving me one-on-one time, however when things were busy and T was struggling, I would demand attention for almost anything, which looking back was extremely selfish. As my father always let me know, he and mum loved us both equally, yet they always knew I would be ok.

In the last few years whilst thinking about my future I started to realise that I would eventually be the sole carer of T, which I was always prepared to do. However, we have a very small family, and when my parents are older and unable to care and support T there is only me. These thoughts made me anxious; support is essential for everyone and what if my husband doesn’t want him to live with us? What effect will it have on my career? Will I be able to travel?

I ended up talking to mum about most of my thoughts, and, as guilty as I felt about doing it, it made me feel better. All mum could say is that she was sorry T was like he was, and she apologized that she couldn’t provide another sibling for me. As you can imagine, this conversation ended in tears. I ultimately think about what it would be like to have a second sibling, that extra support. I know that my parents had always planned to have 3 children but when T became so difficult to manage as a toddler another child was completely out of the question, and I understand that now.

I am prepared to take him on whenever he feels he’s ready, to give mum and dad some space would be good. I’ve researched all the support networks and met quite a few people involved with them which will help me when the time comes. I think the key is not to think too far ahead, which I have a tendency to do, and live my life by the day.

I have learnt tolerance, happiness and utter joy from my sibling. Though times have been tough, he is still my best friend, the one who never fails to say “bless you” when you sneeze (even if you’re downstairs and he’s upstairs), and the caring and eager boy who has massive dreams for his world. He is looking forward to starting a TAFE course next year which is part of his year 11 studies, and will be competing at the national Special Olympics Games in Adelaide. Whilst being a parent of a disabled child is difficult, siblings struggle sometimes too, although I believe we learn immeasurable love from our experiences.

Liz has asked me to share the siblingsaustralia website with you: which is a great resource for siblings of those with a disability.