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.

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!

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.