Siblings: Raising A Son With Special Needs

I used to lay awake at night worrying about Willie's brothers and sister. What had he done to them? How had his presence and neediness and tantrums and basic existence shaped them, changed them, and even traumatized them? I read every book about the topic of raising siblings with a Special Need's brother. We participated in SibShops, a therapy support group. We talked about the elephant in the room endlessly. And then Willie moved out and they grew up and I forgot.

Until last night. I went to see this movie, a Documentary, called My Hero Brother:   http://www.myherobrother.org/ It was a loud reminder that when you have a brother with a disability, it does in fact change you. The movie was so authentic, as it didn't shy away from the harsh realities of this situation.  At one point, one of the sisters said that being born after her Down Syndrome brother was like being raised in a black hole.  She openly discussed how she used to hate him. It was this same sister who volunteered to hike the Himalayan Mountain Range with her brother with a group of others just like her. The love portrayed from this sister to her brother was breathtaking. The hope this movie gives, as is the Director's intention, is a gift that definitely keeps on giving. 

Another theme the Director Yonathan Nir, talked about after the movie was how isolated siblings of those with disabilities are. Yonathan says it is often a self-selection process. I noticed that phenomena once with one of my kids.  None of his sleep-away camp friends knew he had a Special Need's brother for several years. He made that choice. He went to this overnight camp to lose that part of himself.  I remember being dumbfounded by this. But thing is in the movie, these siblings found others who in fact also had a sib with a disability. Now they could share that bond with a whole group of peers. Their entire identities could be revealed.

Check out the trailer to My Hero Brother: https://www.youtube.com/watch?v=vwrbgVrrSSU. And go see the movie. Share it with your kids. Share it with your Special Need's communities. Share it with with your schools. It is a gift you can give all your children. For after the trek to those mountains in India, each of these brothers and sisters, one with a disability and one with not, grew closer then they had ever imagined possible. That is HOPE wrapped up in a box, meticulously gift wrapped, and topped with the sparkliest bow imaginable.

Babies: Raising A Son With Special Needs

First I received a picture text message of Willie holding baby Jane and smiling. Wow, I thought and felt, a happy moment amidst a gloomy time. But then the phone rang and my caller ID indicated it was the head of Willie's day program.  I jokingly answered that I was only accepting good news, knowing this wasn't that. And another shoe had dropped:Willie had crossed another boundary.  He had thrown a chair at a staff member. Luckily she ducked and he missed.  Can't talk about this right now as it is too raw.

Can and want to talk about the text message conversation I had with baby Jane's Mommy after that other shoe crashed into my world. That wonderful Mama said that "she brings out his gentle side."And when you look carefully at the photo, you will recognize that true definition of gentle in my Willie.  For he can be "mild in temperament or behavior; kind or tender, " as the definition describes. Certain people definitely bring this side of Willie out.  More and more, I know he responds to what you think of him. So it is no wonder that he is best with babies right now or those very few who remember his gentle side 100% of the time.

The problem however is that this gentle side of Willie is getting buried underneath his anger, frustration, lack of self-control, what he thinks others think about him. And unless we can figure out a  way to bottle the baby karma and keep it around Willie 24/7, I am afraid he will fail in this thing called life. For baby Jane is not afraid of Willie as others are. She feels his genuine goodness, perhaps even his brokenness. She reflects his potential and true essence.  Jane reflects unconditional love. Willie is drowning in his own feelings of unworthiness and self-hatred. 

I don't know what to do to save him. 

The Comforter: Raising A Son With Special Needs

Willie has a sixth sense about people. Teddy, his closest in age brother, is going through a stage where he just can't stand Willie. Willie obviously is aware of this. So how does he handle it? He steals Teddy's comforter right off his bed. Way to warm Teddy's heart. NOT!

There is a pattern here: one of stealing Teddy's things. It mirrors their relationship as well. In the past, Willie has nabbed Teddy's precious earphones, although he had almost the identical and quite expensive pair.  These incidences irk Teddy, as they should. As these brothers grew up almost as equals, their relationship has always been close, not necessarily a positive one, but intimate none the less. Willie watched as his younger brother surpassed him in all skills by the age of 5. Teddy, who looked up to his big brother as only a little brother can, became disillusioned with Willie sometime around age 7. Give or take a couple years. In present life, Willie looks on as Teddy continues to excel beyond him. Teddy was the one who got to go to College, despite Willie's yearnings for such. Teddy had a girlfriend, which is one of Willie's greatest desires. Their lives mirror each other: even if the mirror is distorted and sometimes broken.

So when Teddy asked me where his comforter was when he arrived home after a New Year's Eve getaway, another reason for Willie to be envious, I knew in the pit of my stomach where it had disappeared. For if your little brother's life is and continues to be so much better then yours, if he gets to do so much stuff just because he doesn't have a brain injury, if he isn't even being nice to you, what do you do? You steal his comforter and take it with you when you go back to your other home. What better way to get Teddy's goat? That cozy, blue down comforter has been on Teddy's bed for over a decade and provides warmth and comfort to Teddy as he sleeps. Willie's sixth sense guided him to grab that and try to wrap some of Teddy's good energy and non-special needs life around his troubled and splintered spirit.

I hope it worked for I am returning it to Teddy next week.