Tuesday, March 7, 2017

Birthdays: Raising A Son With Special Needs

Birthdays are important days in our family. You get to pick out your favorite meal or restaurant, along with your favorite type of cake. You get lots of presents. Even more attention. Everyone is on their best behavior and the birthday person feels oh so special. Except not this year. For Willie is here now, every day, day in and out, soaking up all that attention, good will, all those narcissistic tendencies that the birthday person deserves.  In case I thought things were going smoothly with Willie home, my daughter rudely reminded me yesterday that this is not the case at all.

Heidi turned 14 yesterday. She is a tough cookie, having been raised under and through the tumultuous energy of 3 older brothers. Heidi doesn't cry. She is as even as they come. A happy light, making her way in this world both independently and lovingly. But yesterday all bets were off. Not only did she cry lots, her mood was all over the place, and happy was not in her repertoire. Even though she had presents galore to open and a favorite restaurant for dinner, she felt bad, sad, and mad!

This was all in reaction to Willie.  I knew something was wrong when she was super quiet in the afternoon. But as we all loaded in to the car to go out to dinner to celebrate her birthday, Willie in the front yet again, she just lost it and ran out of the car. For besides silently demanding the front seat, Willie had brought all the attention to himself, as usual, and complained about it not being his birthday.  The rest of the evening was a musical chairs version of our family with 2 cars being taken to the restaurant, Willie storming out of the restaurant at one point, my husband rushing him out the restaurant before the surprise birthday dessert came, and then some.

At one point during her tear filled rants, Heidi said something like "for just one day, I want to come first, have today be about me, sit in the front seat, be the most important."  For just one day. But Willie doesn't allow that.  As she repeated "he always gets his was," my heart broke in two.  For she was right, from her perspective it seems like that. And for that one day, her special birthday, she was right to want to be the priority.  But there is not enough air or room in our house, in the car, in the restaurant for them to both be first. We all make pretend Willie comes first, bowing to his moods, sending platitudes we don't necessarily mean his way, allowing small concessions all day long.  And my daughter let me know, in no uncertain terms yesterday, as she turned 14, that she is not OK with this.

Now we have to figure out what to do with all these ambivalent feelings and changes in our family dynamic, as Willie is not going back, as Heidi requested last night.  As I mend my hurt heart this morning, I take solace in the request Heidi made as we drove home from the restaurant, in a separate car from Willie, of course.  She asked if she could go back to our family therapist.  From that request, I hang onto a small tidbit of hope for our family, as we timidly navigate our new waters.  Thank you Heidi for being brave enough to speak the truth.

Friday, February 24, 2017

Ice: Raising A Son With Special Needs

Willie moved home. It's been 8 years since he lived with us. This has been building. He has deteriorated in his program over the past 2 1/2 years. The last 6 months were particularly perilous, having moved to a new residential provider. Long story. Willie experienced trauma. Needs healing. So we have moved him back with us to wrap him in love and safety.

I don't like living with Willie. I dread it. It makes my life immeasurably harder by the amount of food I must prepare and monitor, the amount of laundry I must take care of, the books I must pick up, the requests and demands I must contend with. It is exhausting and overwhelming. But it is right for now.

The ice issue is a toughie however. Willie likes all things in excess. So when he fills his giant cups, steins, flasks, what have you up with ice, they are full to the brim. This usually creates a mess, as spilling naturally occurs. The other problem is there is no ice left for the rest of us. As I contemplated what it would be like to have Willie here full-time, I worried about the ice. It seemed a problem I couldn't solve or one I couldn't let go.

As with all things with Willie, I do not correct or criticize. That is a given, if you want to have a peaceful and loving relationship with him. Poor guy is so defensive and super sensitive, more now then ever. And guess what? The dreaded ice issue is actually going fine. We are not running out of ice. The messes are minimal. Somehow, Willie's need to use an exorbitant amount of ice could be lessened as he knows he is not leaving anytime soon. Perhaps his need to use all the ice was because he was anxious about leaving the nest, as he has done off and on for the past 8 years. Perhaps all my concerns about living with Willie once again, will play out like the ice. Perhaps Willie feels so comforted to have been truly heard and seen that he will be more pliable to our house rules then I had considered. Perhaps....

Fingers crossed. For it has only been 6 days.

Wednesday, February 15, 2017

Extra-Large: Raising A Son With Special Needs

Dressing Willie in nice cloths has always been important to me. It's true that if he looks good, people will respond better to him. Because Willie hates trying on clothing and even taking him shopping has it's perils, I often find myself wandering the aisles on my own, providing nice, cool cloths for my Willie.

Willie has always struggled with his weight. Food is a trigger. Food is a preferred activity. Excess is a given. Walking is a non-sequitur. Any exercise at all is frowned upon. When your body is hit with brain damage and doesn't cooperate well with your mind, why bother moving it more then you have to? I get it!

As I have shopped for clothing for Willie through the years, I have made my way up through the sizes. First, I had to buy Husky sizes when he was in Boy's clothing.  Then I always had to find pants with elastic that  still looked fabulous. These days Willie prefers a belt and ripped jeans along with his brown, woolen cloak, topped off with his awesome cowboy boots.

Lately, Willie has been secretly eating foods in the middle of the night. We were informed of this last week. Cookie Dough. Ice Cream. Shrimp. Hoping he isn't eating it raw and frozen. This disturbing new trend only adds to my worry about his increasing size and health implications.

So yesterday off I went on another shopping trip. I bought a new size for my Willie: all Extra-Large cloths. My heart has dropped. For even though, I saw sizes bigger then Extra-Large hanging on the racks, I know that Willie needs to stop putting on the pounds now more then ever. This predicament just represents the quandary we are in with Willie to a tee. Is it his personal right to eat what he pleases, when he pleases, in the amounts that he pleases? Or can we/they limit this? Please let the answer be the latter, for I don't want to go shopping ever for that XX-Large!

Wednesday, February 8, 2017

That Holland Poem: Raising A Son With Special Needs

We all know it. That dreaded Holland Poem: http://www.child-autism-parent-cafe.com/welcome-to-holland.html  I always cringed when I read it. My husband liked it. After a while, I sort of forgot about it. But I definitely remember the message of the poem.  After all, Willie has taught me many valuable lessons, introduced me to wonderful people, and of course forced me to never sweat the small stuff. So Holland, as a destination for this life, is actually OK.

The other day we were driving home from yet another visit to yet another potential new program for Willie. The process is exhausting, requiring the patience of a saint, which Willie has taught me too. This program seems surprisingly promising. Kernels of hope are beginning to banish the deep dread and despair that has taken over since Willie has basically "failed our" of his current program of the past 2 1/2 years.

And then my husband says: "That trip to Holland is never over.  It just keeps going."  What he meant was that we thought we had learned all the lessons, faced all the challenges, and that Willie was just fine by the time he graduated form high school at 21. Instead, we have come to find out the challenges are just as fierce post high school, just different. The Holland we are living in now has all new rules, new expectations, and a very different language.

The author of the Holland Poem, Emily Kingsley, wrote a sequel, and perhaps this is what she meant. For some reason, and maybe it's just us, we thought we had arrived once Willie was an official adult. As it turns out, he keeps growing and changing and certainly needing new things.  And we are still his advocates and interpreters of the world.  The new rules in our new Holland are screaming loud and clear.  We have finally interpreted that language and we are listening.

 Still despise that poem though.

Wednesday, January 25, 2017

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 Brotherhttps://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.

Thursday, January 12, 2017

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. 


Friday, January 6, 2017

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.