Advice From a Special Needs Sibling

11:34 PM


I was 13 when my parents got the call that a baby boy needed a temporary home. Always wanting a third younger sibling, I jumped at the chance of being able to take this baby boy in. I remember the day we picked him up like it was yesterday, my mom and I went and left my dad and two younger siblings waiting at home. I followed my mother into a white-washed room with a rocking chair and a couple scattered toys on the floor.  I saw him wrapped in a receiving blanket, held by his biological mother. In that split-second that it took to lay my blue eyes on his big, beautiful, brown, ones my heart grew. I learned a lot about love that day. I learned that true love is selfless. Willing to give up everything, not in fear of rejection or separation.

As time went on visitations and revelations happened. My family soon learned that my foster brother wasn't a typical baby. Seasons changed and as he grew older my parents discovered, with the help of a couple dozen specialists, that this toddler's brain was different. And though not every "quirk" could be labeled by a textbook it was determined that he fell somewhere on the Autistic Spectrum.

As a fearless teen that thought that no harm could ever come to me or my loved ones, I was in denial for quite some time that Joshua was autistic. I claimed my parents were making it up, and he actually had behavior problems that could be fixed by the correct discipline and parenting. No one wants to believe that their family member has something "wrong" with them. That they aren't "normal".


We adopted Joshua after a few years of the crazy roller coaster that is foster care. He became my legal brother, even though he had always felt like my "real" brother. I didn't start loving him more the moment that piece of paper was signed. That day something did change though, a weight of worry was taken off my shoulders. The weight of worrying every single day that he would be put back in the situation where he came from. The nights of crying myself to sleep on tear-stained pillows over the fear of losing him were only bad memories now. I knew that my two other siblings felt the same way. We weren't afraid to love him anymore, even though we always loved him with our whole beings. True love is selfless.

Joshua has thrived with our family and I thank the Lord every day for him, but even though he carries our family's name he also still carries the brain abnormalities inherited from his biological parents. We've been through all the therapies and doctors appointments, the brain scans and the every test imaginable. My parents have given everything up to make sure that he has the best care possible. It all comes down to this...autism isn't curable. It isn't going away, he isn't going to out-grow it. It can't be disciplined out of him or not taught to him. 


My brother is autistic. Yes, that means that he will have a more difficult time than most of us adapting to the "regular" world. Yes, that means that he and my family may have to do things unconventionally. Yes, that means that I have to use extreme patience with him every day. It also means having a brother that is incredibly bright. A brother who is intrigued by things that the rest of us take for granted. A brother that cares for people with an extreme love that I can't describe. This is a brother that I am proud of. True love doesn't look at abnormalities or fear of being loved back. True love is selfless.

Being a sibling to someone with special needs is challenging, to say the least. He's my first thought when I wake up and my last thought before I fall asleep. I dream about his future and pray that it will be spectacular and that he is able to enjoy the things that the rest of us don't appreciate as much as we should, such as friendships. I pray that he doesn't get made fun of for his special quirks and when he does I pray for myself, that I would have a level head. As a special needs sibling, there is nothing that makes me madder than someone making fun of my brother. Children are one thing, but adults are another. So here is some advice from an adult special needs sibling to adults that don't know what appropriate behavior is...

Don't judge my parents for their parenting style
You aren't his mom or dad and you have no earthly idea what it is like to wake up every day and pray that you are making the right choices for someone with special needs. You cannot punish the special needs behavior out of someone. You have no idea what a burden that is, so don't pretend like you do. 

Don't give me or my family advice 
Again, unless you have someone with special needs in your immediate family, don't give me your input. 

Don't feel sorry for me
Do I wish that my brother didn't have autism? Yes, but I am not going to live every day wishing for something that is never going to happen. I love life and my brother so there is no need to feel sorry for me. 

Don't talk about my family behind my back
Words get around and they hurt. Don't talk about my family and our choices behind my back. Period.

Don't talk about my brother as if being autistic is his only characteristic
My brother is a vibrant, loving, bright, musically talented little boy who loves dinosaurs. He is not merely a diagnosis.

The bottom line is, even if you don't understand autism don't be scared. If you have questions ask me or my family. We will be happy to give you more information about my brother's special needs. Thanks to all my friends that understand this and have taken the time to get to know Joshua on a deeper level, to those who have seen past the diagnosis and have found a very beautiful, playful little boy. 

True love is selfless, and I am so thankful to be given the privilege of loving my little brother. 

GRACE

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1 comments

  1. This is beautiful, Grace. Well-written and insightful. Joshua seems like an amazing little boy, and what a great sister he has to help him on his path in life. :)
    -Amy F.

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