The Forgotten Sibling

One thing that I’ve learned about having a disability is that family plays a very important part of your everyday life! I live with my two amazing parents and an incredible little brother who has gone through it all with me. My brother is my rock, even though we fight all the time, I cannot imagine what I would do without him and he is only nine years old! Ever since he was born, he has had to cope with so much and basically had to raise himself! He’s always been very supportive and never jealous. 

Being a sibling of a child with special needs comes with its own challenges. We may have obstacles but there’s one thing that we both have in common: we love to play together. Because of my disability there has been many times where we don’t get to play like your average brother and sister. We have had to come up with different ways of playing together. We are never able to play catch or board games and had to miss out on a lot of the things normal kids get to do. Lucky for us, when I got my new Quantum power wheelchair, things changed for the better. Now I can kick a ball around the house using the base of my wheelchair or elevate my wheelchair at iLevel to play board games with my brother. Sometimes, we even play Limbo! Who would have ever imagined that would be possible! 

Another challenge that siblings face is being able to identify what is normal. Ever since my brother was little, he always thought that the hospital visits, late night suctioning, and modified play was how the entire world lived. Whenever he saw me struggle to do something, his first instinct was to help me without me asking. Once he got to school and saw other kids struggle to complete work or do a puzzle, he automatically would walk over and start finishing the work for the student, thinking that that’s the normal thing to do. He had to learn that at home it’s okay to do that, but when you’re out in the world, unless someone asks for help, you can’t just do their work for them. This became a bigger issue as he got older and didn’t always understand when it was okay to help others and when it wasn’t.

Sometimes parents focus so much on their child with special needs that they often don’t realize that their other child may be feeling left out. Most parents don’t mean to do it but feeling overwhelmed sometimes with helping special needs children can cause parents to forget about a lot of things. It’s important to make sure that you spend an equal amount of time with both your children to prevent anyone from possibly being depressed or acting out because of wanting attention. My parents have always made an honest effort to treat my brother and I equally and I feel that it has helped him because now he feels that he is just as important and valued as I am.

Siblings of children with disabilities and special needs are more important than we think. They are our support system and we must keep our siblings strong mentally and emotionally so they can be there with us on our journey, through thick and thin. 

About Sakina Shamsi: Sakina lives in New Jersey with her parents and brother. Although she has spinal muscular atrophy type II, Sakina lives a full and independent lifestyle. She is active in the disability community and enjoys horseback riding, baking and crafting. Click here to learn more about Sakina.