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Autism and Siblings: "I’m Here too, Mom!"

Collateral_damage By Remy Nirschl

During one heated moment with tears in her eyes, the look my neuro typical daughter gave me, said it all, “I’m here too, mom”.  

Nicole, my twelve year old daughter, is considered neurotypical compared to her brother.  Yet, having a younger brother with autism is not very typical at all.  One evening, I exploded when my daughter just kept pushing all my buttons.  She bursted into tears and said, “everything is about Richie.  Richie, Richie, Richie”. 

Disability affects the entire family.  My husband and I had grieved when our son was diagnosed with autism and through the years have come to terms with it.   Life experience gave us the tools to cope with our son’s diagnosis.  I realize now that Nicole is grieving as she and her brother is growing up.  She is seeing how different her brother is and how we function as a family compared to her peers.  Alone and isolated, limited life experience makes it difficult to cope.

Through the lens of my daughter’s eyes, her experiences are not typical among her peers.  Normal conversation with her brother is limited due to his speech apraxia; his sensitivity to sound and food allergies make it difficult for our family to go to restaurants.  Then there’s the hurtful comments made by her friends, “he’s weird” during those times he becomes very hyper and excited.  At the age of wanting to fit in, she tries to defend him the best she can without causing drama among her friends.  Drama is a daily occurrence among twelve year old girls.  Her hurt, I admit, is part of my doing as well.  Because my daughter is capable of doing many things unlike her brother, my focus tends to be more on his needs.  I’m certain there were times she has reached to me and my husband for help but our focus were on our son or we were just purely exhausted. 

The look on Nicole’s face that day reminded me that “autism” has affected her too.  Her needs are not lessened in comparison to my son just because she is neurotypical; it’s just different and equally important.   Recently, I’ve been taking advantage of those times when there is peace in our family, to ask my daughter how she feels.  She has since expressed feelings of jealousy for the extra attention her brother gets; embarrassment of his behavior in public; frustration and angry feelings when vacation gets interrupted; and feelings of guilt for having negative reactions towards her brother whom she loves. I’m sure there are a lot more she has not yet disclosed to me.  I often wonder if she has feelings of anxiety for the future.  Does she feel she may have to be responsible for him one day? 

Despite these feelings, I see what autism has given my daughter: patience, acceptance of differences in others, loyalty towards her brother when friends make mean comments, compassion and kindness towards other people.  Nicole is s at the age where she is currently challenging me and my husband beyond our limits. I’m sure she will continue to push our buttons, but that look she gave that one heated moment will temper my response.  This article is dedicated to you Nicole.    “I love you and yes, I see you”, Mom.


Remy Nirsch' is married and mother to two children, daughter Nicole (12 nuerotypical chid) and son Richie (8 yr old diagnosed with autism). 


 

Comments

Bernadette

wow remy, you really captured the family dynamic well when you deal with autism. We have yet to take a "family vacation", which now that my son's friends are going on real vacations, he is getting jealous of them. THanks for shedding light on this difficult topic.

kasey

This is our situation exactly.....my daughter is 10 and my son is 7 and you hit every nail on the head! God Bless!

cg

I grew up with a sister with a developmental disability, so I know first hand the impact of what my nt son goes through. Because of this, I'm able to support him and his feelings. My husband and I have worked very hard to make sure our nt son has as "normal" of a life as we can give him. Unfortunately it doesn't go away...I know that I will be responsible for my sister once my parents pass, but I try not to dwell on that; however it makes me think on what I need to do when my husband and I pass as it will impact our nt son.

K Fuller Yuba City

Autism steals the life our children were meant to lead. And not just the affected child's life.The path of the whole family is changed. I feel lucky that our youngest is the affected child, and that his siblings are 7 and 8 years older. There was more understanding because they watched him regress, lose language and fall into the abyss of Autism. They were there through it all. And because they are older, they were and are such a huge part of the team that has brought him back.
We all need to give the siblings extra hugs and kisses and thank-you's.
Think of the giant club they are in. The club of siblings caring for an affected brother or sister when we parents are gone. There will be millions in that club...millions.

Twyla

This brought tears to my eyes. Thanks so much for writing about siblings.

Angie Mercier

I am in tears. Our older daughter now ten, took a back seat when her sister was so out of control day in and day out that I was occupied doing damage control. Her schoolwork suffered because I simply was not able to help her and she barely slept with the hours of crying in the next room.
She then continues in the back seat when I dove into learning and implementing everything I could about diet, supplements and treating my poor toxic little girl.
Things have since calmed down and she is doing my better, they both are actually but yes the sibling bear a burden I don't think I will ever fully be able to understand.
My 10 yr old too has turned out extremely compassionate, patients and her ability to rise above.
It can be so easy to forget that yes, their needs are equal just different.
Than you for this article

Diane

One day my typical son - who happens to be a twin to my ASD child - yelled - I wish I had autism too. It broke my heart! Our typical kids have so much to deal with. Another day he came home and said his one classmate - who happens to know my ASD kid was making fun of him at school - mind you my ASD kiddo has never stepped foot in this school - so it was disheartening to know he's getting made fun of in a school he's never even stepped foot in and my typical kiddo had to deal with that - school is one place he can fit in since basically 99.9% of the kids have never seen nor met his brother (he goes to private school placement). Also dealing with my typical son who likes to parent his brother - any resrouces for that? Sometimes its good - like when the ASD one runs away in the store - but day-to-day its not since he's a sbiling not a parent.

The only silver linig is that through my sons sibling and extended family - there is more awareness of ASD and its impacts. Hopefully this will in the future lead to good things as this web grows - it will be inescapable.

Alison MacNeil

The collateral damage in my household is named 'Neely' and she is an nt, 9 yr old sister to her 5 yr old asd little brother, Nick. She currently has the following sign on her door;

"Dada's unfair a lot. Mummie's unfair way too much. They like Nick better than Neely, yah right, I can think of one thousand reasons."

I was pretty worried when she was younger and Nick had just been diagnosed and was an absolute mess that she thought her real name was "Just a sec' Neely", because that is how her life played out. Last year in the height of Barbiedom, all of her Barbies were speech therapists! She's inherited my earliness problem and the mornings are a total bear while we try to squeeze 17 supplements into Nick while she stands around with her backpack on, shifting her weight and sighing "is this the last one?" before I can take them to school. Sometimes I dread her school events because they are so emotional for me. While all the other nt parents applaud adoringly while the kids perform a play, I swell with feelings about how unfair it is Nick will never be able to handle something like this, how privileged these parents are to live 'Autism Free', and how much of my daughter's life I've missed since the last one of these little school functions.

Perhaps the most painful moment for me came while driving her to school one morning last year. I'm a psychotherapist and I asked Neely if she would like to talk to someone about her feelings about having Nick her in her life? With tears (she rarely cries) she said "what would be the point? They can't make him better, they can't make it (the autism, not the brother)go away, no one knows how to help us." After dropping her off three minutes later with some pathetic attempt at comfort, I swerved off the road and cried buckets ( I very rarely cry) because she articulated my feelings exactly.

Something has shifted in the last 6 months. Nick's made a bunch of progress on Lamictal, Dave and I are calmer, more philosophical about the Autism road ahead, less plowing forward with therapies like our hair is on fire. And it is abundantly clear to me that I am not willing to lose my nt child while trying to save my asd kiddo. Nick may have to get a little, tiny bit less better but we all get to go forward as a family. Thank you for giving me the opportunity to spill all this.

michele i.

Thank you for this great piece. I have three boys- and the one who is now considered "typical" is also the one who pushes my buttons the most. I know he just wants my attention. Sometimes it is just so hard to meet everyone's needs in the family. I've been trying very hard lately to give him the attention he needs, but it is not enough. I know he just wants me to see him too.
I'm going to try harder.
Thanks for sharing.

Benedetta

Lisa;
My son is now 24 years old Aspergers.

We have been through DPT reactions that lead to a stroke. We have been though seizures; many hot, unexplained fevers, and headaches; incontinence at school; non verbal;strange staring spells; pulling out clumps of hair because he said ticky things; totally heartbreak when he was desparate as a child to pedal a tricycle, loved wheels; trying to keep him from laying down in the road, so he could feel a wheel; classic autism most of the time; grand mal seizures; absentee seizures; constant myclonic jerks; dignosed later with PDD-NOS, and then dignosed with tourettes.
Now today he has a sense of humor,he is fun to be around, unless he gets in one of his moods which is rare. He is very spiritual. We have the epilepsy under control, he goes to a small community college and has enough hours to have his electronics degree, but he likes CAD so is still taking a few more coursee like that. As soon as this front goes by and it stops raining he will be mowing the hay, and titer it tomorrow and rake it the next - and his grandfather and father is going to see this year for the first time if they can teach him to bale it.

I think Forrest Gump's mother said it best "Life is a box of chocolates, you never know what your going to get"

The majority of America does not really know what that means,and they giggle. If they really knew what it meant they would find it a good piece of advice. You are not far into your journey. It was not what you expected and neither will anything you worry about be either.

Yes, I too worried about the future and most of the stuff I worried about turned out to not be an issue - other things that I never saw coming turned out to be an issue.

So when you catch yourself worrying about the future, stop - you don't know what that future will be and you will only make yourself sick.

n

I am always glad to see compassion from sibblings and relatives. The hard fact is some of us totally lost friends family and our lives due to autism. This world is about "me". Teenagers are to cool to be compassionate and try to help another person. 30 mintues in church and theyre lives go on afterwards. Your child ask why don't I get invited to anything. Whats worse is they look through your child as if they weren't even there. I look forward to the next life. The scores will be evened. God bless you all.

Holly

"Being the Other One" by Kate Strohm is a great book about the experience of growing up with a sibling with special needs. She travels the world and interviews siblings as adults and there are some remarkable patterns among the siblings: eating disorders are very common, depression, difficulty with intimacy/relationships, feelings of guilt, fears about their responsibility, etc. I highly recommed the book. I read it when my nt daughter was 5 and it has helped me to focus on her needs tremendously. Tragically, my sister in law who will turn 19 this summer, has suffered immeasurable growing up in the shadow of my brother in law's often violent ADHD which later turned into a bipolar dx (though my husband and I feel he was hfa and vaccine injured and misdiagnosed early-- ritilin was the treatment rather than early intervention). I gave her this book as she was completing treatment for anorexia/bolemia, and it meant a lot to her to read about other's experiences. Today would have been my brother in law's 21st birthday. He took his own life in December ("suicidal tendencies are a rare but serious side effect" of the anti-psych meds he was taking). Siblings suffer tremendously, and we have to give them the tools they need to live a full life in spite of their sibling.

Heather

Autism really does affect the whole family and I often find myself forgetting that my older ("NT") son is affected just as much as I am. My children are younger- my "NT" son is 7 and my son with ASD is 6- so a lot of that worry about fitting in hasn't happened yet, yet just a few weeks ago C looked at me and said, "It's not fair!". He was referring to the fact that sometimes we can't go to things because if I don't have another helper I honestly can't keep an eye on both of them- B takes all of my attention.

It's not fair- my mama instinct wanted to say "Well life's not fair"- but he was right. And I had to acknowledge it and build in some extra C time.

Lisa Clark

I am the mother of an 8 year old boy. I always obsess on what happens in the future. I think this is a very legitimate concern for parents with young sons on the spectrum. What do you do with a child mind in a grown mans body? Everyone says You should not worry about it, it's far away. I disagree. It is sooner than everyone thinks.

Holly M.

Collateral Damage -a very appropriate picture. When my now 16 yr old daughter was 12 she took a magazine "maturity" test and it said she was 40 years old. This saddend me deeply. She wants to be a doctor and employ her siblings and buy a large property so they can live close-by. A teenager shouldn't have to think like this. She puts way to much pressure on herself.

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