Saturday, July 2, 2011

SNSS: I am the Sister

Today brings a completely different voice to Special Needs Sibling Saturdays. Last week the stark. raving. mad. mommy. interviewed her children about their siblings…

Now, I bring you Luna, a young woman who is not a mother (yet) but who has a lot of experience with autism… as a sibling. Both of her brothers are on the autism spectrum.

She also has experience caring for children - other people’s - as she has worked as a nanny. She writes as ababynanny on her blog
Hand in Hand in Lala Land.

Obviously NOT a Mommy Blog, although she openly admits to “hanging around mommy blogs.” Most SN/Autism mombloggers don’t have paragraphs like this in their posts:  ”I wonder what would happen if I totally started dancing to this song down the aisle of the library?  The only trouble is, my skirt would definitely slip down and I’m not, as such, actually wearing underpants.”

(Oh, to be young, footloose, and fancy free again.)

If you go there, be prepared to hear the interesting, sometimes random thoughts of a bright, funny, unconventional young woman exploring the world and her place in it. 

But first, read this moving post about her experiences as the sister to two autistic brothers, here:


I Am the Sister – by Luna (aka ababynanny)

I am a 21 year old girl, not yet a mother, but I think a lot about autistic kids because both of my brothers are autistic. Growing up watching my parents try to raise my brothers gave me a lot of huge, huge fears about motherhood.

But reading (some might say stalking) Autism Mom blogs – especially stark. raving. mad. mommy. – is helping me to see how mothers can be content with their special needs families, loving their kids and knowing they are awesome. Right now I'm really coming to terms with my future motherhood.

I am the youngest child in my family, with two older brothers and one older sister.  My oldest brother David (now 32) has Asperger’s syndrome and my brother Tyler (now 30) is mildly autistic with developmental and learning disabilities. Although these guys are my “big brothers,” my sibling relationship with them, growing up, has been far from typical.

When giving a definition of autism, a doctor might tell you about the impaired social interaction. Real life translation: I can’t remember ever receiving a hug from either of my two older brothers.

The doctor might tell you about low IQ.  Well, I can tell you that ever since I’ve learned to read, I have been reading aloud to my eight years older brother instead of the other way around, and we both love it.

The doctor might mention restricted and repetitive behavior, but I’ve experienced the variety of having a brother who can always tell me about the latest movies and Broadway plays, and can’t rest until he’s collected them all on DVD. (Don’t call it obsessive.)  There’s a whole lot about life with autism that a doctor can’t tell you.

In some ways, my brothers are a challenge.  Growing up, when I invited friends over, I had to educate them first. I'd take them to the stairs in the laundry room on their first visit, and clumsily but confidently talk about things like poor reading skills and special ed classes, while they always listened quietly and respectfully.

My brothers required more attention from my parents in many ways. And people with Asperger’s syndrome typically have an emotional maturity rate of about 2/3 their age, so for years I’ve had to deal with the frustration of a “younger” older brother in both David and Tyler.

And yet, overall, I love the experiences I have with my brothers.

As a little girl, it didn’t seem strange - in fact, I was lucky - that the person I played dolls with was my teenage brother, Tyler. David, always very smart, would teach me about interesting things that most people wouldn’t, from ancient history to modern medicine.

Whatever intellect or sociability he may lack, Tyler paints and draws and is one of the most creative people I know.  Despite Tyler’s supposed limited ability to relate to people, he has a streak of compassion that runs deep and that I admire.  

For some reason he has this adorable weak spot for vulnerable women.  He gets tender and nurturing around them. Tyler has a volunteer position (supervised by other adults) taking care of the toddlers at our church while their parents are in class.  We had a single, pregnant relative living with us, and every Sunday he would always bring her a Dixie cup full of animal crackers they had been feeding to the kids.

He's unusually high functioning for someone with his type of disabilities. He can't learn easily, but he wants to SO badly!  He has a voracious appetite for books. He is the favorite visitor of our librarians and the employees and Barnes and Noble, and he can take the bus there himself.

Tyler collects books he cannot read and his teacher used to report him copying from the pages of books for hours, which strikes me, as a lover of reading, as poignant and tragic. He is however quite well read through all the books he listens to on tape. When tested, his scholastic skills fall around kindergarten level, but his vocabulary is relatively off the charts at high school level.

My relationship with Tyler now breaks my heart.  I adore him, but in a very distant way. I used to spend hours playing dolls and writing stories with him when I was little. I brought the writing skills, but he brought the play and imagination.

As I got older, we both outgrew that, and he got... annoying. He could be a such a brat, and I could never work out our tiffs with him the way I could with a typical sibling.

Even being around him, today, as a young adult, makes me feel overwhelmed with frustration. I feel like gritting my teeth listening to him go on and on about some movie.  I think my guilt adds to my annoyance. Why can't I just be patient and accepting? I pray for help with that.

I feel a strong desire to enrich his life. This is because he's so limited by lack of socialization, lack of independence, and lack of, well, the ingenuity and opportunity and comes with intelligence.

I genuinely WANT him to come live with me and my future husband when we have a settled home someday. Nieces and nephews would enrich his life so much. He is pretty low maintenance as far as day to day stuff and needs lots of alone time, so it wouldn't be intrusive or a big deal. Then my parents could have a life.

I was a live-in nanny on Long Island recently. The family went on vacation, and said Tyler could come stay with me.  I excitedly emailed my mom - Tyler had been saving up for a trip to New York, (he loves Broadway) for FOREVER.

Well, I think he was expecting a wonderland, but Manhattan is OVERWHELMING for someone with autism! My mom ended up coming on the trip, and he ended up needing her for support, but also resenting her taking away from our freedom and fun with her stress.

His favorite part of the whole trip was when he and I were alone and I took him out for some "real New York pizza" in a boring Long Island strip-mall. He told everyone about it.

Then there’s my brother David. The way David affected me really messed me up.  I was afraid to have kids.  No kid could possibly have been harder to raise than David.  And ya know it's genetic.

He was hell. My parents did EVERYTHING THEY COULD THINK OF for him. AND NONE OF IT WORKED. They tried to shield me from it, but I could tell.

My poor parents just wanted a simple life.  They wanted to raise a few average Christian kids who would do things just right: go to college, get married, make them some grand kids.

Instead they got psychiatrists and doctors and government aid and social workers up their butt forever.  And my dad, a great provider, has worried constantly about paying all our mental health bills and, as moral support to David, attended a million and one support groups. 

My parents are, and weren't to begin with, the most emotionally healthy people, and I am unique in my family for the way I have addressed that as I became an adult and really worked hard to get better.  But one thing I do really admire my parents for is the way they tried and persevered and supported my brother.

I was supposed to be the good one. Quiet, eager to please, precocious, even "wise," I was their last and easiest kid. Until I hit my preteen years and the stress and lack of emotional support in my home became too much for my hyper-sensitive self and I slipped right into the pit of depression that genetics had ready and waiting for me.

But, too bad for me, my parents had completely been run out of steam for that sort of thing with David. They would angrily have "talks" with me about my slipping grades, and I would get the eerie realization they thought they were talking to HIM, not me. 

They would say, "We've tried everything and nothing works on you." David could not be motivated to change by any reward or punishment under the sun.

But I hadn't done anything...

The thing is, David doesn't just have Asperger's, he has severe depression (that started way too young when he was teased at school), OCD tendencies, severe ADD. He is completely negative and self defeating.  He made a lot of bad choices and brought a lot of darkness into our home.

He was sweet to me growing up.  I was his "favorite," the least obnoxious of his younger siblings, and I cried and ran out of the house the first time my parents had to kick him out for behavior they couldn't accept in their home.  I even watched him be escorted away by a police officer once.

I am PROUD that David REFUSES to think inside the box, I am PROUD that he is so very smart, and PROUD that he always maintained a goodness and sweetness even at his lowest point.  He is proud of his unique approach to the world and absolutely refuses to change it, even though I think it would make his life easier.

He wants to help people, and I'm sure what he's been through has made him empathetic.  He's a cat whisperer, full of faith, and knows everything about everything. He's amazing, really.

Having my brothers around has taught me a lot about open-mindedness, acceptance, and individualism. Through Tyler, I’ve had the opportunity to work with many people with disabilities, including assistant-directing a play for developmentally disabled adults, something I never would have chosen to do if it wasn’t for my experience with my brother.

And occasionally David's quirks can produce comedy that is the stuff of family legends.

Like the time he randomly got it into his head, to write a letter hoping to convince our grandfather that he should, like David, give medication a shot. Our grandfather is probably mentally ill, but is the kind of narcissistic jerk who makes everyone around him miserable, without being aware that he has faults.

From one dysfunctional man to another, David's letter (that never got sent) began with a tactful opening and then went: "It is my opinion that you are insane." The entire family laughed about that for months!

I do have a bottom line.  And it is that my brother's are freaking SPECIAL people.

If I could tell parents anything, it is that autism is not the end of the world. Try to still be happy. David has finally grown up a little, did great with lots of biofeedback, and is slowly taking college courses and wants to become a nurse. He's a good person, always was, and we always loved him.

He's perfect, really. Both my brothers are. That needs to be all that matters.

Oh, and LAUGH.


I don't know about you, but this post made me laugh and cry. It made me think a lot about how my autistic son Jacob affects his brother Ethan, and what I ask of and expect from Ethan on a daily basis. 

That Luna has been through so much with her brothers and still clearly loves and values them gives me much hope for their future together. 

If you want to hear what Luna has to say about other things, go to her blog Hand in Hand in Lala Land.  

You might want to try this post about actually loving kids, or this one written to the fathers in her life on Fathers Day, or this funny one on keeping a sense of humor about kids tantrums. Also if you just want to get inside the head of a sweet, funny 21 year old? Try this post about, well, you'll see. 

Luna has also written a guest post on Scary Mommy about why it's hard to be a nanny. Well worth the read.

You can also follow her on Twitter, where she tweets as  

Thank you Luna, for sharing the story of your life with your autistic brothers with us here, today.

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