Posts Tagged ‘autism parenting’

Sibling love part 2: Did the aliens take my boys?

Who are these boys and where are my sons????

I thought that my boys tolerated rather than liked each other.  They are both on the autism spectrum but they are so different.

Philip is mathematically and musically oriented– it goes with his perfectionism. Josh has little tolerance for math, likes music but doesn’t want to read the notes. There are more pressing things to be perfectionistic about. (Perfectionism, although in different areas, is definitely a common trait with those two.)

They both like diy stuff but in radically different ways. Philip likes to make the tools talk and act like the ones on Handy Manny.  Josh wants to go into construction.  At 2 years old, he knew the names of all Dad’s tools and helped Dad build a small wooden trailer.  When he’s stressed, he grabs his tool box and scrapwood and pounds away building interesting objects.

Philip doesn’t mind that he’s a loner. He’d rather be alone most of the time. He was one of those kids who had a problem with eloping (hee hee… when I first heard that term I pictured him eloping to Vegas… but not that kind of eloping, of course). Josh likes being with people. When he first moved in with us 6 years ago (he’s my stepson, but I claim him as my own!), he was always two steps behind me.

Philip’s room is neat.  Josh’s room… well, we haven’t seen the floor in a while. When they shared a bedroom it wasn’t pretty.

And so on and so forth.

So today, when I heard this exchange, I was taken aback. For two boys who have communication issues, this was major.  I was so glad I heard this when they were unaware that I was listening.

Josh: “Sorry, Philip, I have to go to school now. I’ll miss you and I love you.”

Philip: “Well, I love you and I’ll miss you too.”

Josh: “You’re the greatest brother in the world.”

Admittedly, Josh did have a sarcastic tone, as most teenagers that I know. Being somewhat skeptical, I considered that Josh might have been joking.   But then again…

This is just one more example that there is more than meets the eye, especially with kids on the autism spectrum: feelings that aren’t voiced, words that aren’t expressed, real human beings behind the stims and the “off” behaviors.

Knowing this lightens my load.  Sometimes I don’t give my kids the benefit of the doubt, and sometimes I get burned out and way too skeptical.

Today– I feel that maybe, just maybe, we have a “normal” family!  🙂

Sibling love

Today I received the most beautiful photos of my family. They showcase the love that my kids have for one another.

Let me back up for a sec. My friend and fellow “autism mom” is learning to be a photographer.  Well, actually, I think she already is a talented photographer, but she’s taking classes to get the “credentials” (oooh, aaah).  This past fall she took a film photography class and asked if my family would be willing to be the subject of her portfolio.  As the humble mom that I am (ahem…) I said, “Of course!”

Her project for this semester was named “sibling love.”  In it, she had 3 pictures.  One of Philip (10 year old, has autism), one of Meg (6 year old, no diagnosis), and  a picture of Philip and Meg sitting in the tree in our front yard and smiling at one another.  My heart just melts!

Meg is Philip’s best “play therapist.”  She is the one person who relentlessly taught him to pretend:  acting out stories they see on tv or read in books, and running  like a horse, among many other things.  She is his partner in crime when it comes to ganging up on Mom and Dad.  She is the dancer when he plays his keyboard.  She is his translator.

She adores her oldest brother, too, especially now that he has a tv in his room.  They want to have “movie nights” and try to sneak in the not-allowed-except-in-the-dining-room snacks that they love to eat.  She is his cheerleader and defender.

She is trying to figure out the world right now and is wrestling with the autism thing.  She recently said to me, “Philip has whole autism, Josh has half autism, and I have no autism…. right?” Right, honey! Her explanation of the differences on the autism spectrum are as good as any others I’ve heard lately.

I am so grateful that she loves her brothers.  I am so grateful that she sees the gifts in them.

Although I do worry sometimes that Meg doesn’t get enough attention from Mom and Dad and that, as a sibling of two autistic brothers, she has quite a heavy load to bear, I celebrate the wonderful of her love for them (and vice versa), and how they’ve grown because of her (and vice versa).  I often witness her acceptance of others outside of our family who are different.  She is growing into a compassionate, accepting, loving person.

Words

I am thankful for making words.

I read this and froze in my tracks. My son wrote this on his construction paper “leaf” at school for Thanksgiving 2010.

I began to remember all the times we wondered if he’d ever speak to us.  I remembered when he was three years old and, putting him to bed one night, he said, “I love you” to me for the first time.  I cried, and told my husband and called my friends and family, even though it was late.

I recalled how we used to not give him anything he wanted, putting everything out of his reach, until he would say the word for the item.

I remembered how his only words were echolalic terms.  He would only repeat or “script” words from movies, books, and songs.  I remembered how happy I was when he told me the first time, “I want…. Daddy?”, as if he were unsure he could want Daddy.  I remember (as does my husband) how I unlocked the bathroom door where Daddy was… um… busy… because Philip used a complete sentence and expressed that he wanted someone he couldn’t see for the first time!  Philip stayed in the bathroom with Daddy until Daddy was done.

I remembered how we slowly and painstakingly helped him ask questions and request what he wanted, how we used and are using sentence starters to help him have conversations with friends, how we role played before social situations what he could say when someone asked him such things as “How are you?  Do you like school? What grade are you in? How old are you now?”

And, more recently, I remembered with tears in my eyes how happy I was when I asked my husband if he would put Philip to bed and Philip said, “Daddy, tell Mommy no.”  How he answered me now when I asked him how his day was or what he wanted for dinner.

Philip wrote, I am thankful for making words.

I am thankful, too.

Welcome to the lighter side

Ahh, autism.

When my son was first diagnosed, I had a panic attack and then went into an anxious depression.  I believed all my dreams were dashed.  I wondered who this boy I called my son really was.  Previously I was afraid of people with differences or disabilities. Was he now one of “them”? I wondered, “What did I do to make my boy this way? How can I fix it?”

My stepson, who didn’t live with us at the time, had been diagnosed wih autism 6 months prior.  The day of my son’s diagnosis, my husband and I decided to stop trying to have more children. The very next day, I discovered I was pregnant.  I just knew it would be 3 out of 3 with autism and that I wouldn’t be able to cope.

It took me a few weeks to realize that my boy hadn’t changed.  He was still my son– my pride and joy and light of my life.  I dropped the self-blame, and set out to learn all I could about autism, and how to have a relationship with my son and raise him to live to his fullest potential.

About a year after his diagnosis, when my daughter was 6 months old, my stepson unexpectedly moved in with us.  I went from 1 to 3 children in 6 months, and two were on the autism spectrum!  I once again went through a period of extreme anxiety.

I don’t remember how long it took, but one day I saw the lighter side. I could either approach this with a sense of humor or drown in frustration and sorrow.

I chose the humorous approach.  Then came advocacy, social stories, educational journeys… and I approached them also with as much humor and lightness as I possibly could.

Humor and lightness are the approaches that work for me.  Yes, I still get frustrated, and yes, we still have our “moments”, however every day there is laughter in my house.

The goal of my blog is to share with you the ways I have found to lighten the load and brighten my days, and share what I have learned and continue to learn along the way.  Comments are welcome.  Thank you for stopping by!