For Families With A Child With A Disability

via Community Submission

At 27 months old I was given a sibling. My brother, Glen.  New Zealand – 1984.

a young girl and her baby brother

These are my personal experiences and views on having a sibling with a disability.  I’m sharing this to encourage awareness.  I aim to avoid motivational quotes and inspirational clichés as we all see enough of them on Facebook! As romantic and true as they mostly are, I will get to the nitty gritty, as that may be more useful.

The early days

Glen has Rubinstein-Taybi syndrome (RTS). It’s a very rare syndrome (estimated 1 in 125,000 – 300,000 births) and characteristics include short stature, moderate to severe learning difficulties, distinctive facial features, and broad thumbs and first toes.  Glen is non-verbal although he is very loud and generally able to get his message across! In his bedroom he is screaming…”Aaaahhhhrrrrggghhhaaah!!!!” He’s excited as he’s watching Elvis on his computer. He spent about a year in a wheelchair after an unsuccessful operation to install metal rods in one of his legs to try and straighten it. He is able to walk unassisted now but will always be dependent mentally and physically. He currently lives in an assisted care house a short drive from my parent’s farm with his flat mates.

Two young kids riding on a wooden horse

When Glen was born my Mum and Dad did the very best they could.  He didn’t achieve the milestones of sitting, walking & talking when he should have or at all.  They knew something was not right with his development but no one could give them answers.  It was a very hard time for my parents and they were a bit lost until it was finally determined that Glen definitely had learning problems. Then they could be helped. They had the help of an understanding paediatrician, a pre-school education group and then a special school.  They couldn’t imagine the circumstances if they didn’t have that support. To be involved, Mum and Dad have been on school committees, treasurers and helpers in general and for special projects.  I was happy to be involved also.  I loved going to Glen’s school shows – they were a delight!

His specific problems went undiagnosed for the first 16 years of his life. I remember all through my childhood explaining to those kids who asked, usually quite bluntly at that age, what was wrong with him. “It’s what we call Glen syndrome & it’s just one of those things.”  We didn’t have any leads until a parent at his special school saw a picture of a child with RTS in a book that looked just like my brother.  Mum and Dad then made contact with Dr. Rubinstein, who first described “Rubinstein-Taybi” in 1963, in Ohio.  The doctor confirmed that it was very likely that Glen had RTS.  This meant we had a bit more to go on; things to look out for, life expectancy, ways we can assist him, but there are so many varying factors with RTS that it’s still very much a see how we go journey.

Our sibling relationship

We had our sibling rivalry like the best of them but I assume that it was over slightly unusual things than most.  At 31 he still enjoys toys meant for a 3 year old so we have always had noise – the annoying repetitive tune of a music box, an electronic shriek of an Elmo guitar and many movies on high volume – Grease, Sound of Music, Mary Poppins and Annie are all great favourites.  I remember having to go into school one day saying “My brother ate my homework.”  But for me, that was normal.  I don’t think anyone ever made fun of me and I never searched for disapproval. My tolerance levels are high, generally. Having a special needs brother has its benefits.  

With my brother not able to speak, a lot of my childhood was spent pinning the blame on him! “Mum! Glen tipped the pot plant in the bath!” – “Mum! Glen spilt your perfume on the carpet!” – 6 hours into a car journey no one complained when I said “Mum! Glen threw his music box out the window!”

We have been grateful on many occasions for the convenient car parks that come with having a mobility card.  Free entry to the zoo and aquarium, front row seats anywhere and more often than not, a higher level of kindness shown towards our family.

Coping mechanisms in the family

I often have people say to me “How did your parents cope?”  I think the answer is they have just had to.  You have to be strong as it’s the only option sometimes.  Of course they would’ve had moments when they didn’t cope, I understand this more now that I have my own children.  But you have to pick yourself up, get the support you need to keep going and crack on. The alternative is not attractive.

I feel appreciative that they put so much effort into spending time with me as I know they were worried I may feel the lack of attention with all the medical appointments and special needs of my brother, but to me, that was life.  

I didn’t know any different and certainly don’t feel as though I have missed out. I think as a child it’s the most important thing, to feel loved.  And I knew I was loved. There was no great sense of sacrifice.  My life was somewhat different to a lot of my friends but that made me a bit unique and I kind of liked that.

We have always relied on humour in our family.  This may seem insensitive sometimes but we all have our different ways of coping.  Things happen and if you don’t laugh, you cry. For example, Glen was into belts for a long time so every time he’d meet someone he’d make them sit down, mount them face first and reach for their belt.  If you weren’t wearing a belt, you were dead to him, next please! If you were wearing a big black belt with studs, lucky you, you now have a new best friend and he will want to kiss you! It’s been an interesting ride observing reactions to his behaviour. Mostly I see people trying so hard to be cool but they cannot hide the terror on their face towards his unpredictability.  What on earth will he do next? I think that is perfectly understandable. I have a fear of birds for that same reason.  It’s ok to be uncomfortable, let’s remove the stigma from that.

We also push him occasionally.  For example on his 21st birthday we took him to an amusement park.  He mostly enjoyed himself but the log flume may have been a bit intense for him.  We were smiling and laughing to help ease his fear but he didn’t understand that it was just a ride, of course.  What were we thinking?! The look on his face and eagerness to exit stage left told us that he thought we were in real caves with extremely trippy creatures closing in on us.  He certainly wasn’t enthused about the 17 meter plunge into the water below! “It’s all going to be ok, fun fun!!” we shout! At least we didn’t take him on a roller coaster I suppose.

What having a brother with a disability has taught me

Growing up with Glen has taught me to make the most of any situation and not sweat the small stuff – sorry unavoidable clichés.  

I believe you can never assume that someone’s life is perfect or “normal” as you never truly know what someone is challenged by whether physical or mental or both. As my dad says “Everyone has some ‘imperfection’, some not readily evident. Just some more than others.”

My proudest moment was seeing him in a suit at my wedding as he walked up with Mum to present me with a horseshoe gift. It was a surprise for me and I was completely overwhelmed.  Even people that hadn’t met him before were in tears.  It was a special moment for everyone to appreciate how sharing challenges with others can produce such rewarding moments.  I was thankful so many of my family and friends could witness how emotional that was for me and I’m sure that Glen gave them a gift towards greater understanding.  There is no need to be ashamed.

Glen is my only sibling and I didn’t really think too much about what my life would be like if he wasn’t born with a disability.  Sure, we think about what he may have been like (definitely a computer geek, good on him), but I don’t think about how different our relationship would have been.  Through marriage, I now have two “relatively normal” brothers and this year I will gain a sister.  I admit that it excites me to have experiences and connections with them that I wasn’t able to have with Glen but each relationship and friendship is unique.   He is who he is, we love him and I feel blessed to have a sibling at all.

I seldom judge myself against others.  We are each on our own journey but having a brother with a disability has taught me how important it is to support others.

We are absolutely blessed with a very supportive and caring extended family.  The attitude of our family is that having a member with a disability is not the end of the world, as some may think. Having said that, we would love that he didn’t have a disability.  It’s just not the hand we were dealt.

To parents that may be worried about the effects on a sibling… the nitty gritty is that it can be annoying; constant noise, lack of freedom perhaps and being unable to put Christmas presents under the tree in advance. However, I know I am stronger and happier within myself for having Glen as my brother. I may even be a more gentle and patient parent because of him. The benefits outweigh the disadvantages by a country mile and the older I get, the more I recognise this. It really is the beginning of a new adventure in which everyone learns so much about themselves and each other.  That is my normal, I am grateful and we look to the future with open hearts.  I am honoured to be his big sister.

Jules is originally from New Zealand, but is based in Singapore where she’s a mom and she volunteers regularly at the Riding for the Disabled Association. She rode horses competitively from the ages of 7 to 17 and her brother, Glen, rode regularly for the same organization in New Zealand. She loves being able to care for kids of various disabilities with the experience of caring for her brother close to her heart.

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