It was brought to my attention that I should write a letter of intent so that when my husband and I are no longer on this earth, people will know what we want for Kyle. What kind of  life do we want people to help him have? In particular, what are the experiences we want for him and with whom.  It should not be a guessing game. Or a time of desperation and drama. 

This brings me back to the writing of Heart’s Desire in my book, Breathe. I started to collect my thoughts back then but never completed the project. For the last few years,  “Letter of Intent” has been sitting on my to do list. The guidelines given to us eons ago by our special needs trust lawyer have grown moldy in my file. 

Why is it so hard to get started? Maybe because I come face to face with my mortality. Slap. It is there, right in front of me when I think about writing this letter of intent. Heart’s desire. Final wishes. Call it what you will. It asks when I am gone and when my husband is gone, what is it we want to see happen in Kyle’s life? The answer is I don’t want Kyle to be without us. Aha, but that is not an option. That is not on the checklist because life says he will be here a good 25 years without us.. maybe more or maybe less.  So what’s the second answer?

I have a list of questions to ask myself as I write this Letter of Intent or LOI.  LOI as in “loyal”. I am loyal to my son. So if I am loyal I will see to it that he has the opportunity for the best life possible after I am gone. But who is going to love him the way I do? Nobody. Hopefully he will get other brands of love and it will have to be enough because that’s the only option. 

 Perhaps the key to this LOI business is just getting started. Allow myself to show up at the page the way I did when I was writing my books and feeling blocked. I always tell people “just show up” and the rest will take care of itself. That is the first step. Maybe I will have to show up at a blank page a few times before my fingers begin to move, delving  into the uncomfortable places.  What if the words don’t come? They may not flow right away especially if uncertainty is standing  in my way. 

Maybe it would be easier to percolate on this LOI business for a few days. Throw the question out into the universe and watch the ideas rain down on me. And when I hear one, collect it by writing it down on my  LOI insights list. This feels like less pressure than sitting down at the blank computer screen or page. When I have a few, then I can begin assembling them like a puzzle. More ideas are likely to follow once the initial juices begin flowing. 

This should not be so hard, my critic tells me, and maybe you are thinking this too. No it should not. Technically. But realistically it feels very hard. I know after all is said and done and this LOI is completed, at least version one, there will be a great sense of relief and even accomplishment and a secure feeling of being prepared. I’m sure this will be a “living” document that I will keep revising as the years go by. Preparation is a good thing.

Are you with me on this? If you have a child with special needs who will need lifetime support (extensive or even minimal) you owe it to him/her and those in his/her village to decide on what you want to happen after you are not here to make it happen. Maybe you are not finding this as difficult as I am and you have already jumped right in. Or maybe you have one written and tucked away with your important documents. Good for you. 

If not, let’s buckle down together and get this done so when the time comes, everyone will know exactly what we had in mind for our children who will depend on others to help them live a full, rich life. 

Now where WAS that list I started back in 2008??

Jeff Stimpson, writer and speaker to educators and professionals is a guest blogger today. Having grown up in an apartment building in NYC, I confess to spending  part of my childhood joy riding the elevator.

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I take the suggestion of my wife Jill and decide to walk my 13-year-old son Alex around the upper floors of our apartment building when he gets home from school. This to combat his new bolting problem: leaving the apartment and darting into neighbors' apartments.

"Going to 15? Going to 14?" he says when we get on the elevator. "Not going to 15!" This is mimicking me telling him he's not going to visit floors. This comment of mine has, in recent weeks, propelled Alex and his autism and his impulses out our front door and up the stairs (slam! goes the stairwell door outside our apartment) to discover who among his upstairs neighbors keeps their doors unlocked in the late afternoon.  He also likes to make the shapes of the numerals 1, 4 and 5 with his fingers.

This bolting thing is killing me. I hate that he barges in on neighbors; some of his favorite drop-in targets seem stern-faced and uncharmed. It's one thing to have a little kid plow through your door, but another to have that door almost unhinged by a 4-foot-10 young man who needs a shave and maybe medication.

Jill has suggested letting him run, me escorting, to "get it out of his system."

"Not going to 15..."

"As a matter of fact, Alex, we are going to 15."

We start there. Alex darts off the elevator and makes a 1 and a 5 with his fingers, rocking on his legs with rapture. Then we get back in and drop to 14, where he does the same thing, except he makes a 4 and not a 5. Then he gets back in and hits "15" and we bob from 10 to 15 and back again, up and down. Do the neighbors mind this? I keep an eye on the floor number light inside the elevator, and the down arrow never lights, which means no one's requesting use of the elevator.

This beats the fights and the tussling and the scenes of dadly anger in front of neighbors riding the elevator.

"Fifteen!"

"You can't always dig in your heels with Alex," Jill has said. "He'll just dig his in harder."

We spend maybe half an hour, up and down, down and up, between 15 and 10. At no time does anyone seem to request the elevator or get on. "Alex, where next?" I set a timer on my cell phone for three more minutes, and show him ("Three!"). Once he does bolt from the elevator to try a neighbor's knob. "No no no doorknob! Leave the neighbors alone!" More and more he stays in the elevator car when the door opens and just uses his fingers to make the numerals. Maybe this is more about the numbers of the floors, more about just getting out a little bit after a day at school, than it is about barging in on neighbors and making his father want to evaporate.

By five o'clock, Alex is on the couch back in our apartment. I've secured the door with locks and alarms and a baby guard on the knob (a baby guard, for God's Sake!). He sits quietly and punches up videos on his tablet computer. Floorwalking seems out of his system for this afternoon.

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of "Alex: The Fathering of a Preemie" and "Alex the Boy: Episodes From a Family's Life With Autism" (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger's Digest, Autism Spectrum News, Fatherville.com, and The Autism Society news blog.

He and we had 19.75 days.

He had 19.75 days of feeling good. Peaceful. Happy.  Joyful. He had 19.75 days of a full life. We had 19.75 days of enjoying him and knowing he had a full life.  Eating out. Swimming. Getting to know his new assistant. Starbucks. Trying and loving a new drink. Reconnecting with an old friend. Shopping. Enjoying his food. Volunteer work at Horses Help.... yes, even in the Phoenix summer heat.  Walking, walking, walking... lots of exercise. Rising early and being ready for the day before anyone else. Rising to challenges. Participating in as much life as he could. Having a competent role in many little things. All the day to day living we take for granted when we are healthy.

And in the last few hours before the 19.75 days were up, he got to experience Phoenix’s relatively new attraction, the Musical Instrument Museum also known as MIM.

They say music is the language of the soul. I know it is certainly the language of Kyle’s soul. In fact, in the box that asks you to check primary language on various forms, for Kyle, I would have to say MUSIC. Music gets in there where other things may not. Music really speaks to Kyle. He was in heaven listening to  the music samples from all over the world. Tammy and I thoroughly enjoyed observing his reactions to different instruments, beats, sounds, etc. Watching closely, we noticed so many different responses to the varied music. What a delight for all of us. 

Though I was really grateful to be able experience MIM with Kyle, I had no idea how precious those last few hours would turn out to be. Just a few hours after being home, Kyle went into another cycle. Again, out of respect for his privacy, I will not go into detail. But if you have been following my blog you know that he has been struggling with this for awhile.

I have to admit I was taken by surprise, though in hindsight there have been subtle clues that something might be brewing for the last few days. But still, I did not expect it. I really thought he might be done with them. He was sitting comfortably in his chair and all of a sudden, he looked different to me. His affect changed. Yes, in an instant, everything appeared to shift. He was experiencing something. He grabbed my hand and held it tight as if to say "please don’t let it take me, please don’t let this happen to me again." I could see he was frightened, really frightened. “It” was coming and both of us were powerless to do anything about it. He was being taken before my very eyes and all I could do was hold his hand and try to comfort him. He wanted me to sit with him and hold him and squeeze him tight. So frightened, he did not want me to let him go. I wanted so much to do something, to stop “it”, but there was nothing I could do. So I just held on tight and so did he.

Within the next few hours, he would continue to slip away and by this morning, he would be gone and replaced by a different Kyle. I know this sounds kind of dramatic, but this is exactly how it feels and appears to those of us who know him well.

He’s resting on and off today, incredibly tired from this thing that has taken him. I hope this one will be milder and shorter than the previous ones. I have more support than I have had in the past and that feels nice. I can be stronger and better when I am there for him. We’ll be moving on to Plan B soon. Or is it Plan Y?

19.75 days. Precious.

So if you only knew you had 19.75 days before your life was going to change drastically, would you do anything differently?