This is a guest post by Leah Kelley of 30 Days of Autism. Leah is a K-12 Special Needs Resource Teacher and blogs about her experiences both as a teacher and as the parent of a child on the spectrum. I found Leah after reading her wonderful post Treasures I Found at the Thrift Shop: Autism and Understanding. Leah also presents on issues regarding autism and literacy and has been published in reading/language educational journals. I think Leah is a fantastic writer and advocate for our community, and I am so pleased to welcome her to Flappiness Is. Today’s post specifically addresses a topic that has been on my mind since viewing Alicia Arenas’ TED Talk “Recognizing Glass Children” – a powerful talk about the hidden pain of siblings of special needs children. Having a neurotypical child as well as a child with ASD, I have been giving this subject a lot of thought recently. In this post, Leah shares her and her daughter’s thoughts on the sibling experience. Thanks, Leah!
I have a beautiful daughter who will be 18 next week. Nika was almost 6 when H was born. He was like having a real baby doll and she was just awesome with him. Nika was precocious and very social: she talked early, walked early, and she was and is very musical, witty, articulate, academically bright, and strong-willed.
Tonight before dinner H was showing Nika the butterfly knife that he created out of Meccano, and his Villagio (our name for Value Village) leather jacket. (Lately H is working to emulate Mutt Williams – son of Indiana Jones from The Kingdom of the Crystal Skull.)
Nika said he looked like a small biker. Then she added, “Somebody once asked me if there was ever a Zombie Apocalypse what would you want to have with you? I replied with: A convoy of armored trucks and my little brother, because when all else fails he will find a way to make something useful out of the rubble and remains of civilization.“
The two of them then got into a hilarious conversation about how Nika would be the driver because H’s feet won’t reach the pedals, and laid out contingency plans, roles, and responsibilities in case of an actual Zombie Apocalypse.
This is a good place to be… and my policy is… when the going is good, sit back and enjoy, because it will get tricky again soon enough. I don’t need to go looking for tricky or troublesome – it will find its way to my door. I love this interchange because it is representative of the amazing relationship that is developing between my children. H adores his sister, and he misses her deeply and terribly when she is not around, and Nika is coming to a place where she is able to really see and admire certain qualities in her brother, and I see in her some budding advocacy tendencies. I like that!
Some of the best advise we had when H was diagnosed with autism was that it was important to understand that a sibling goes through the same process of grief that the parents do: shock, denial, anger and finally acceptance. I suspect that neurotypical siblings (NT sibs) can also feel guilt that they do not face the challenges of their sibling and/or that they have no right to complain or feel life is difficult. This is huge pressure for a child.
The lives of NT children can be deeply affected as the entire family system works to accommodate the complicated needs their sibling with autism. It can be difficult for the NT sibling to express any negative thoughts without feeling like they might be terrible or not worthy of love. However, the feeling of being pushed aside is understandable and at times likely justified, and parents need to be open to the expression of this so they do not drive these feelings inward in an unhealthy manner. It is understandable that an NT sibling might, at times, feel resentful. Life just got a whole lot more complicated.
It can be hard to be the sibling of a child with autism. It can be hard to have to tone things down and keep a calmness to routines because your mom is constantly watching and saying things like, “OK now… that was funny, but let’s not rev H up.” When you are excitable and full of life and fun, it is difficult to have to rein in impulse so that your parents are not stressed by your brother’s potential melt-down.
There have been times when H has said insensitive things and really hurt Nika’s feelings. There was an occasional time when he hit her, and many times when he has irritated her with his persistent talk about his present topic of interest. Usually – these have not coincided with Nika’s interests.
It can be hard to have the sensitivity to know that your parents are anxious and worried and that they have to focus so much time and attention to the newcomer. It can be hard not to want to set him up and see his wheels spin, and bug him to get back at him a bit for what you know your family is sacrificing… for what you may be sacrificing.
Nika was willing to help me with this post, but when I asked what she would like to share she said, “I don’t know… I don’t really think about it anymore. I am just so used to it.”
So I decided to interview her:
What is your earliest memory of your brother?
Laying at the cabin and reading him Little Rabbit’s Loose Tooth or some other book.
What do you remember feeling about him being different?
I remember that you always seemed busy with him and I felt pushed off to the side. You were busy taking him to tests or staying up late working on funding stuff. Sometimes you’d be so tired from dealing with him that when we got time to be alone together you would fall asleep. I understood but it was still frustrating.
What are your hopes for H as you see him get older?
I hope that he can live a normal life just like anyone else and that he can take care of himself and be on his own and be his own person.
What role do you think you might play in his world?
To be there for him if he ever needs anything. To be there to listen to him and give him advise. Just to be there when ever he needs me to do what ever I can.
What is your favourite thing about your brother?
He is fun to be around – It is always an adventure. He is just chill and laid back. We can hang out together and it is easy. He may not have advise for me but I can talk to him and he listens.
What has been a hard thing to get used to?
Just that he is slower to learn and respond and sometimes I forget that.
What makes you mad?
I don’t know… just when sometimes he seems to not be listening and it feels like it is on purpose, but it might be just that he didn’t hear me or it didn’t register.
Is there anything H has taught you?
He has taught me how to be strong, because I know that school is rough for him and he has always made it through and he seems to stay true to himself.
What advise would you give to siblings of a child with autism?
Tell the other child to be understanding and that it is not always easy. It is strange that no matter how mad you can be at your brother or sister – but if someone bothers them you are right up there to defend them. You may feel it might be easier to have a sibling that is so-called typical, but you love them and they are still your brother or sister either way and you love them no matter what they struggle with. I believe that having a brother with autism has made me a stronger and more rounded person. This has given me a better understanding of the many types of people out in the world that may seem like everyone else but may be struggling with challenges that we can’t see. So having a sibling that has an invisible disability has made me realize the truth and relevance behind the statement “you can’t judge a book by its cover”
You can cry – I might too…
My little brother is my best friend and even though it is sometimes a struggle I would not change him for any other brother or sister in the world. I accept him for who he is and I just hope that some day the world can do the same.
Thank you Nika, for sharing your thoughts, memories and insights. Love you honey!
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