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.

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.

HOLIDAY CHEER: Raising A Son With Special Needs

Below is part of an email I sent to the Directors of Willie's new program.  In the spirit of the holiday season, one of good cheer and honesty, I share a vulnerable slice of my Willie life. The names have been changed to protect the innocent...LOL:

"I want to share some thoughts and observations I have about Willie.

First of all, Willie seems completely oblivious of problems within his new home, including any issues with Jake or Matthew. (Jake is one of Willie's new housemates and Matthew is a staff member.)  As you know, Willie tends to perseverate when things are upsetting him, so his optimism about his new house is hopeful and genuine. Willie says that he and Matthew got into a fight: that is all. I want to be clear that neither my husband nor myself hold any grudges against Matthew.  We are completely aware that Willie can push people's buttons and we completely "forgive" Matthew for anything he may have said. My husband felt a warmth and positive authenticity yesterday from Matthew when he picked Willie up. Moreover, he described Willie to appear to be comfortable at the house, seemingly fine with Jake as well.  Which brings me to my next thought, which has to do with Willie and his "reputation."  I know you all have to take things that come out of Willie's mouth seriously, especially threats to others. But I fear that because of the one incident with his old housemate, Willie's reputation has been marred. I would offer that it is possible that we all need to ignore any threats Willie may make or did make towards Jake. I know this may be difficult but my guess is that this type of language will go away if ignored.

My other observation about Willie is that he seems calm and more even then even last time he was home.  I would suggest that Willie's new medicine is doing it's job.  However I am acutely aware of how Willie perceives most words and actions now based on the Behavior Plan Meeting we had. I have noticed that Willie hears my words as criticism and that if I first approach him with a loving or kind comment, he is much more responsive.  I guess I didn't ever realize or want to accept how poor Willie's self-esteem is and how distorted or paranoid his hearing and thinking can be.  

So I guess my message is that I feel hopeful about Willie's success in his new home, despite the issues that have arisen.  In the spirit of infectious positivity, I encourage you all to do the same. For as we know, Willie feels our vibes more then we know."

The Death Penalty: Raising A Son With Special Needs

I don't normally have a thought that includes both the Death Penalty as well as my son Willie. But this piece came on NPR about whether or not those with Intellectual Disabilities could be eligible for the death penalty, and Willie immediately popped into my head. A sad indictment on his current state. This issue is being heard before the Supreme Court currently and is really about how to define Intellectual Disabilities, by state or federally.  Read more here in this USA Today article about the current controversy in Texas. But what caught my attention was the statement about the high or borderline individuals with Intellectual Disabilities, those with IQ's in the 70's. And I immediately knew that Willie is considered high, for so many reasons, among them his eloquent ability to speak and interact with others, as well as his strong reading skills. And the idea that those with Special Needs may not be responsible for killing someone caught hold in my heart and thoughts and hasn't yet let me go.

If you read my blog regularly, you know that Willie is in a dark place.  Read this post to catch up on his latest struggles that unfortunately include harming another individual:  http://whoishetoday.blogspot.com/2016/11/willie-trumps-all-raising-son-with.html
We have been considering how responsible Willie is for all his actions as of late.  For we thought we had all the supports in place, the social stories, the parent check-ins, the prompts, the extra staff, etc, yet Willie still charged his housemate. I realize now that we can talk to Willie till he is blue in the face, and sometimes it just doesn't matter. Willie said he just couldn't take living with him anymore and he just snapped.

This is the type of statement I imagine someone with Intellectual Disabilities might say, after they killed someone.

What I wonder about Willie is if he is not at fault for hurting his housemate, whom he despised, pushed his buttons, and clearly bullied him, then where do we go? For if Willie cannot be held to a standard of personal responsibility, how can we help him, prevent this from happening in the future, and keep him safe? And if God forbid, he ever truly harmed another person, what would happen then? For if Willie is not accountable for his actions, who is? The Brain Damage? And if so, can we give it the Death Penalty?

Ambivalence: Raising A Son With Special Needs

Willie just left yet again. He was home with us for 14 out of the last 18 nights. It is a similar cycle every time we do it. The yearning for him to go. The desire to get your regular life back. The multiple burdens that are uniquely Willie, lifted.  And then he goes. The ambivalence sets in immediately.

Is he OK? How does he like his new bedroom? How hard was it to get him to take that shower? How bad was his mood when it was time to get up at 8 AM, as opposed to no schedule at all? The dread that he is coming home again for the holidays. The yearning when you watch the special needs adult working out at the Y.  The wondering if he is at his local Y doing the same? The relief that you don't need to provide those 3 gourmet and hearty meals for him every single day. You can unhide the candy jar. You can finally attend to your 13 year old's need to have more of your attention. You scour his bedroom. You get it ready for the next time. The dog is just so sad that Willie is gone. And you tell her, he will be back soon, with joy in your heart. The mixed emotions are overwhelming.

 I am left with the image of my 24 year old boy-man, becoming more and more disabled as he ages, while simultaneously becoming more and more independent. Perhaps I am full of ambivalence because that is what Willie is as well.  And as my husband says, it is much harder for him. It must be. Poor guy.