Lessons from my mother and brother

[IrmaJean]

I thought to share some more about my childhood and my experiences of growing up in a household with a disabled family member. My eldest brother is severaly autistic and mentally disabled. The first year of his life was seemingly uneventful and normal, with no indication of any problems. In fact, he was advanced in gross motor skills and was walking at 8 months of age. Apparently, at around age one, he even spoke a few words. My mother said he seemed to slip away shortly after and lost everything. He would sit on the floor for hours and spin plates, watching intently. My parents took him to several doctors, received conflicting advice and none knew exactly what was wrong. I suppose back in the early 60's there wasn't as much information readily available about autism. Eventually there was a diagnosis, but with it came more confusion as to how best to help him. Most suggested institutionalizing him, to which my parents refused. One said teach him sign language, another said don't teach him...My parents were understandably confused.

There were two other boys born within 4 years time and 3 years after that, I was born and the family was complete. It was very painful watching my parents struggle...and most especially my mom, who essentially gave her life to him and all of us. It took its toll on her and she eventually became ill with a number of diseases and died at a fairly young age. She also spent a lot of time trying to hide her struggle, though it was always very visible to me. We were bound together and were a close-knit family...I believe in large part due to these circumstances. Undoubtedly we all had a lot of responsibility in aiding with the care of my brother.

My brother loves music, swimming, going for walks, swinging and jumping on the trampoline. We had a lot of equipment in our backyard that he would spend hours utilizing. He also has something called Pica, which means he eats anything and everything and often things which aren't edible. He would eat non-stop and we had to take some measures to control this. Ropes on the refrigerator, locks on the cabinets and doors. It was very difficult to take him out in public without outbursts and looks of dismay from onlookers, which were very painful for all of us. I would describe the relationship between my brother and mother as almost symbiotic in nature. They moved in tandem as a team and knew one another very well. It was very beautiful and touching to watch and often left me in awe.

I think the experience of having a disabled family member had a huge impact on my personality and in who I've become as a human being. I learned a great deal from my mother about loving. I have also learned from her mistakes of not meeting her own needs. In therapy, every major thing I discovered about myself went back to my mother, my brother and my family. I am, in fact, still making discoveries about myself through this. On the down side, I viewed myself as powerless and unimportant in being unable to stop the pain and suffering. I also now am very aware of my need to protect and keep others safe. This is something which I must be careful to balance as it is not always helpful or healthy in excess. My eyes were open to emotional pain at a very young age and this is why I am particularly sensitive to the pain of others now. It helped me learn to value relationships and family and the sacredness of love. It helped me to understand that imperfections and flaws are something that we all carry with us and this is part of what makes us human. I also think my childhood helped me to become a empathetic and compassionate person. These are traits that I value about myself.

My brother has not been the same person since the passing of my mother almost 18 years ago. He struggled a great deal after her death and my father was unable to care for him after having a stroke. Recently he has found some stability in the group home he is in, so this has been a relief. There is a photograph that my mother had put up in his room a very long time ago that still hangs on the wall. It's a waterfall and it reads "If you do not understand my silence, you will not understand my words." Whenever I look at that photo, I can't help but tear up. I see my brother's struggle, my mother's struggle...and maybe all of our struggles. We're all here doing our best and just hoping that someone is listening to us and understands... and that they might hold our hand along the challenging path ahead.

I'm talking about myself a whole lot here, but I opened this thread as a place where others might share their experiences of life with a disabled person that they love very dearly.

[Aaron.X.C]

Deleted...

[danni]

Gosh IrmaJean,

that is so beautifully written!!! I don't have anyone with disabilities in my family but I have worked with people with disabilities for many years in my career. Some of my masters work was in autism in fact.

What you describe about your mother and your family is just amazing to me. I watch how families with a child on the spectrum struggle now and I can't imagine how hard it must have been then. It is such a testament to your mom and all of you that you banded together to help him and support him. Another part of it I understand totally. He is family. First and formost he is her son and your brother and that trumps everything else!! Don't get me started on Autism though or you'll be in for another of Danni's soap boxes!!

But....here's the other thing your story left me with.... What about you??? With all the time and committment that was necessarily spent assisting your brother, was there anything left for you? Who protected you? Was there nurturance left for you? You are such a natural caretaker and I can see how that came to be but what about now even? Who takes care of you? I could be wrong here but it seems like you give and give and give. I just hope there's room in that to soak in the love and care that we have for you!! You are appreciated and your kind heart and gentle spirit are a gift to all of us here!!

[LaLa]

Thank you, IJ for sharing this!

I don't have any experience with a disabled person, I only write to thank and... as Danni has written it so nicely, it's only left for me to say I agree with Danni

[Calla]

I would just like to echo the other comments. Thank you for sharing. You are clearly extremely compassionate and empathetic. These are amazing qualities and I am glad you value them. But as Danni says I hope there are people taking care of you. You give so much to this site, karma owes you a lovely big payback

[IrmaJean]

Thank you. I appreciate your kind thoughts.