May I just start this post off by saying that this is a title of an incredible book that made me cry when I first read it.
The full title is Being the other one – Growing up with a brother or sister who has special needs by Kate Strohm
The reason this book touched me so deeply when I first read it, was because it was the first time I had felt validated for being the sister of a special needs brother. That someone out there finally acknowledged that I mattered too even though I wasn’t the one with special needs growing up.That even though I wasn’t the one that demanded as much attention as my brother, I deserved to at least have my frustration, my anger and my sadness acknowledged. This is something I never had validated as a child. It was near my 30th birthday that I finally understood a whole other side of my childhood that also lead to my CPTSD diagnosis.
Too much responsibility on a child can interfere with normal social development and the establishment of independence. From a very young age, I became a ‘mini mother’ to my brother and my mum and dad just allowed this, as it was easier for them. This and the addition of both of them suffering with NPD, made things extremely difficult for me and of course my brother. It was an abusive & neglectful environment and I was told repeatedly by many kids my age that I was always too serious growing up.I always resented that and thought there was something wrong with me. On the other hand however, I also realised how much the grief of having a disabled child or sibling, is unsupported and unknown by normal families.
Siblings of children with special needs are usually expected to grow up faster than their peers.While parents have to focus so much attention on the child with special needs, many siblings learn to look after themselves.
Another big problem for siblings is that they end up feeling very isolated, because nobody understands how tough it is, to always put their needs aside for their special needs brother or sister.They also tend to feel a range of emotions that they never get a chance to discuss, such as anger, depression, embarassment, fear & guilt.
Siblings miss out on attention from parents, learn to put the needs of others first before their own and at times they may also wish they had special needs so they would have the same attention from their parents. They may at times feel pressure to be perfect to make up for their sibling’s special needs and also may have built up resentment towards the brother/sister with special needs, because they get treated with more leniency in all regards.
I love my older brother very much and would do anything to protect him. It isn’t his fault that he has these special needs and even though I will always wonder what it would have been like to have a ‘normal’ 36 year old brother now, I am still glad he is in my life and that we can share our feelings and fears.
The sad reality for me is that if my parents were healthier and better able to offer unconditional love, then both my brother and I would have been allowed to be ‘our true selves’. We both would have been allowed to make mistakes and not get punished for them, we both would have been allowed to express our likes and dislikes without being rejected and we both would have been able to better deal with our sadness. Him for the fact that he knew he wasn’t normal and felt rejected because of this and me for the fact that I never felt important enough, because I didn’t have any special needs. It is a sad reality that, even though our family was never balanced due to my brother’s special needs, I greatly believe that it was MORE my parents’ NPD that caused the greatest harm. The reason I say this is because since meeting my husband and his family, I have finally witnessed a healthier family dynamic where there was is one disabled child and one healthy child.These 2 boys are now my nephews but when I was living in Greece I started nannying for my now sister in law and looked after the youngest of the 2 boys.
For privacy purposes, lets assume that the youngest of the 2 boys is called ‘Peter’ and the eldest is called ‘Adam’. Peter was the youngest of the two boys and was around 8 years old when I started looking after him whereas Adam was 12. Peter unfortunately suffered a stroke at the tender age of 3 and ended up with special needs and semi-paralysis in both his right arm and leg. This meant that he wouldn’t be able to use his right arm and leg as he once used to. Also the older he got, the growth in his right arm & leg were also compromised, which resulted in him limping and not being able to use his right arm properly. His special needs aside from this, were also in regards to his learning and attention span. I was employed as a nanny, to play with him and help him after school, whilst his mother worked. I was also asked to make sure that both boys didn’t get into too many arguments or aggressive play fighting as brothers sometimes do.
The difference I noticed in this family, was the fact that both boys were allowed to be individuals and most importantly were allowed to be kids. Neither of them had to help around the house, be ordered around or asked to do too much for the mother. Peter and his brother were both treated fairly when it came to discipline and Adam was allowed to have a sense of freedom in his own life to pursue many hobbies, have time to himself and grow in confidence. He was never asked to help with his brother, he was never asked to stop what he loved doing, was never asked to be someone he was not. The only thing I would have maybe done differently as a parent, is given Peter a different type of attention, as unfortunately despite his disabilities and unlucky path in life, I can see that he acts in a very attention seeking way, in an almost narcissistic way. His mother never appropriately grieved the loss of her healthy child and has since always talked about how good he is at everything, when the reality is that this poor kid is unable to really do anything.
I am not a parent myself and would never claim to know what it is really like, so I am not judging my sister in law in any way. However, it is a real shame that Peter, who is now 12 is showing more and more signs of narcissism, is feeling more and more ill at ease with his peers and is watching his now 17 year older brother do all the things he will never be able to do. This is a very harsh thing to watch. I have a lot of compassion for both my sister in law and Peter but I must admit, I feel a little jealous of how wonderfully Adam has turned out to be. He is a good looking, smart and talented young man who has values, respect and kindness. He is able to self reflect and one day admitted to me that he is quick to judge people. This came after I talked to him a little bit about my parents and my estrangement to my father. He listened incredibly attentively and was very sensitive in his response. He said that there are a couple of kids at school, which seem very quiet and a little bit strange and at the beginning he thought they were weird. After he got to know them however, he said that they had had a really difficult childhood and were actually lovely boys. When I say that I am a tiny bit jealous of my 17 year old nephew, I mean it in the kindest way possible. The jealousy comes from comparing my own childhood and teenage years, which were incredibly difficult due to neglect I suffered. Unlike my nephew, I didn’t and still don’t have a healthy amount of confidence to live a fulfilling life in the way that I know I could have. I am content but I know I could still make improvements. I also have suffered from depression and Complex PTSD from the age of 15-16..My nephew doesn’t have any mental health problems whatsoever and thank goodness for that! So when I say I am jealous, I still have my moments of feeling grief for how things could have been different for me.
Unfortunately, it took me a long time to grieve my lost childhood in many ways. This only happened in the last few years, in a deep enough way and I guess I still have some more grieving to do..It is never too late to start your life from scratch and with my recovery, self-help reading, therapy, blogging & love from my closest friends & husband, I am feeling much happier and more content with my life.
My brother is also happier, as he has also tried to distance himself from our mother (which he knows was abusive) and it is only our parents who are now missing out on quality time with us, as we will no longer tolerate their abuse.
my child within 