Sunday, April 10, 2011

Not His Brother's Keeper

The other night Ethan and I were talking he was getting ready for bed. He told me he really wishes we'd had another child, that he also had another "regular" brother or sister besides his autistic twin, Jacob.

As Ethan gets older I try to give him more and more straightforward answers, figuring he's old enough to handle reality and truth of his life, albeit the somewhat "light" and what I think is vaguely age-appropriate version.

So I explained to him that there were two reasons why we hadn't had another child. First off, I was pretty old to be a mom when I had him, and we were unlikely to have been successful in having another. 

And then there was the autism factor, that since we'd already had one kid with it, the chances were much higher that we could have another. And that just wasn't a risk we were willing to take. If he thought one brother like Jake was tough, how would he like two?

He still wasn't convinced. Besides being able to play with them, he told me, he thought it would have been helpful to have someone else help him to look after Jake when they're older and their Dad and I are gone.

Talk about moments that stop time.

I told him that we didn't know for sure that Jacob would need looking after, that he might grow and change in ways that astonish us. And also that if he did end up needing some help, we would make sure to set things up in a way that he would not feel unduly burdened by his brother. Whew.

What surprised me the most about that extraordinary conversation was that Ethan was being so calm and rational about it. Because for some time now, most talk of his brother has usually been of the yelling and screaming variety. I am used to hearing this:

“I hate Jacob! I don’t want him to be my brother. Why did I have to have a twin brother with autism? Make him shut up! He is the meanest, most annoying brother in the world! I wish he were never born! I want you to give him away to someone else! I want you to send Jacob away. Forever!”

To say things are difficult between them right now? An understatement on the order of calling the Pacific Ocean a small pond.

When they were younger the dynamic was different, three year-old Ethan longed for his brother to play with him, talk to him, acknowledge him. But Jake was mostly just in his own world, much more likely to relate to adults rather than children, if he was going to relate to anyone at all.

When The boys were four and going to two different pre-schools a few blocks away from each other I had this conversation with Ethan after dropping Jacob off at his school:

Ethan: “Mom, I wish that Jake and I both had Autism or we both didn’t have Autism.” Tears jumped out of my eyes.

Me: “Why honey?”

Ethan: “So we could be the same and go to the same school.” 

I was so full of love and sadness at that moment. And Ethan so full of longing for connection. But fast forward a few years and the toll of constant rejection and disappointment has worn away all the compassion, turned everything bitter and Ethan full of anger and resentment.

And this is how we live now: Jacob wants to play with Ethan all the time, while Ethan wants nothing to do with his brother and, except for rare, magic moments, will not give him the time of day. Jacob hates being ignored, and like most kids has decided that negative attention beats no attention at all, so spend his days annoying the living crap out of his brother.

I have a category tag on my blog: “Ethan and Jake do NOT get along” and it brings up a lot of posts.

Some quotes from them:
“Life with Ethan and Jacob is not easy these days.  They have no relationship with each other, we do not function as a cohesive family unit much.  A moment here, a moment there, is all.  Otherwise everyone is in their own individual bubble with me running back and forth between everyone like a crazy person trying to mold some cohesion where none naturally flows.  And then the fighting, the constant fighting.”

“Five minutes with the kids exhausts me. And don’t you know it’s school vacation week! And I would be looking forward to spending time with the kids, if we all could do the same fun things, if my kids actually enjoyed being with each other.

Actually that’s not the problem. Jacob loves being with Ethan, wants to play together all the time.  Ethan would prefer for his twin brother to be swallowed by a black hole never to reappear again. And I have a week of this to look forward to: Jacob pleading and pining and Ethan yelling and rejecting, unless I separate them, but there are two of them and only one me.”

“This morning hearing Ethan so happy playing with his friend brings it all back, the dashed expectations: My sons will not be lonely they will have each other. Instead, today Ethan is happy and Jacob is lonely.  Most days they are both lonely, Ethan bothered, angry and Jacob hurt, rejected. And I can’t fix it, I just don’t know how, I feel like a failure as a mother. “

Clearly this is a major issue in my house. My kids fractious relationship probably causes me more agita than any other one single thing in our lives.

I also know that I am not alone in this, that it’s an issue for nearly every family in our situation. I wanted to find out more about what others are experiencing, and how they are -- or are not -- handling things, so I went hunting on the internet, trawling through other people's blogs, but it was really time consuming.

So I decided I wanted to start a focused dialogue about this, and what better way to do that than to create a space for it on my own blog.  I invited some special needs parenting bloggers who have more than one child to write about their experiences in a series of guest posts. Thus "Special Needs Sibling Saturdays” was born.

In my introductory post to the series, I wrote:

“Special Needs kids and sibling issues? An explosive combination. Nothing makes me cry more. Not the death of my father. Not autism in and of itself. But this: the extremely difficult relationship between my twin sons, one on the Autism Spectrum, one not.

I don't have a handle on it. I have NOT figured out how to make it work in our house. There is yelling, there are tears. There are often two unhappy, lonely, angry boys and a mother who is at the end of her rope in our house. I am not proud of this. I am saddened, deeply troubled.

That my children mostly do not get along, that it is so hard for us to function as a cohesive family unit?  Is probably the single most consistent source of pain in my life.

So that's what I'm hosting a guest series about. Not what I do best, but what I do worst. Because that's what I need to hear other voices about.”

The series launched with this lovely post: “My Brother, My Brother” by Alysia of Try Defying Gravity who also writes here at Hopeful Parents (as do quite a number of my guest bloggers) and has now been running for three Saturdays. 

Reading all the posts that have been published so far (and the ones that are pouring in, soon to come) has been a wonderful and very helpful experience for me. And from the feedback I’m getting, these posts seem to be resonating for folks out there too. I am very glad to be able to do my small part in creating dialogue and community.

So please come by on Saturdays to visit and read. And know that whatever is going on in your house -- whether your kids are each others best friends and helpers/teachers or whether they get along like snakes and mongooses -- you are not alone.

Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.


  1. My older son Cameron is on the spectrum. My younger son has a rare disorder called Eosinophiic Esphagitis were he is allergic to all foods and can not eat. Cameron has to work extra hard at being aware of his younger brother and his severe food allergies by constantly washing his hands and remembering not to play rough bc of his brothers g-tube.. Marselles has to understand Cameron likes to be alone and not bothered sometimes and it can get rough but what I do is try to find activites that they both can engage in but also allows a level of independance like Art projects and Leggos.. It can be hard.. Marselles tends to cry a lot more bc he misses his brother but by focusing on acitivites that they can both enjoy... it allows for them to be together (for marselles) but have fun individually (for Cameron)... just a thought

  2. Thank you for this...I have been struggling lately with this. My oldest daughter told me the other night "I hate my brother, He is annoying, I feel trapped" She is USUALLY a Huge help with her brother, but as she enters her teen years, He seems to push her buttons more than usual and I feel lost sometimes. It seems like all the "Mommy daughter days" in the world do not help. My Younger daughter has told me she wishes her brother did not have Autism, so He would play with her. I do all that I can to ensure my girls have lives outside of Autism, but then there are days when I feel like I am just spinning my wheels.

  3. Both of my children have autism, though they are affected very differently by it. We've gone through this. My son, 11 not wanting anything at all to do with his sister, 6 and being so heartbreakingly mean to her. It was crushing for all of us. Me having to explain to my daughter that her big brother "just wanted to be alone" or whatever...trying to keep a balancing act so he wouldn't be raging and she wouldn't be crying. It was a nightmare. I thought it would never end. But it seems to have.
    In the last 6 months to a year, they get along much better. They play together, and laugh and tell secrets. And it's nice. I would say that now we have more of the "typical" sibling bs. Not that it's fun, but at least it's not soul crushing. I hope it lasts. I hope it lasts a long time. One thing life with Autism has taught me is that there's always a "next thing" lurking around the corner. Things settle down for a minute only to rattle and rise up again in the next.

  4. Goodness, what a useful post! I have only had a chance to skim it, but I'm interested to hear about the sibling Saturdays you've done.
    Have you thought about creating a circle of support around Jacob? This would be friends and family who care about Jacob and who meet once a month to start with to look at how they can support the family. I thought if Ethan could see that in fact the circle around Jacob was wider than the immediate family, he would feel more reassured about the future. These circles of support often later are involved in developing life plans for youth/young adults (again, very intentionally talking about how the person will be supported in the future). Again, this could be helpful in alleviating fears.
    Thanks very much for sharing this Varda. Will go back when I can read it properly. xo

  5. think I had post traumatic stress syndrome after the last long school holidays! also felt like a useless mother and so helpless to change the awful conflict in our home between my 9yr old on 'the spectrum' and his siblings- 4yr old twin brother and sister. I worry so much about the damage to their little hearts and how they will feel about him when theyare older - was so comforted before by the thought of him not being alone when Im gone because he has them.

  6. you are such a fabulous writer
    I loved reading this
    I hope their relationship gets better

  7. So much of this reminds me of my twins. They are both on the spectrum but so different from each other that one seems almost NT most days. He often asks why his brother can't come to his school, etc. Heartbreaking. Their relationship, like every relationship, will change and evolve -- I hope that for mine and yours.