Expectations

I am breaking a rule today, I am writing about The Littlest Buddy, and for anyone that reads here that is part of the special needs community.

**If you are relatively new around here, The Littlest Buddy is diagnosed with a rare genetic disorder called Smith Magenis Syndrome. You can read about what it is HERE, and how we reacted to it HERE, and after all that if you are compelled you can go HERE and purchase a copy of Do Fun Stuff, a charity album that was made to raise money for new research. More about that later.

Cole and I recently had the pleasure of discussing The Littlest Buddies development on the phone with Dr. Ann Smith for a few hours. Ann is one of the original pioneers of SMS research and one of the geneticist's that made the discovery in 1982 of the deletion in chromosome 17 which is the culprit for all of the problems centered around SMS-- she has dedicated her life to putting this puzzle together. From the beginning of her research and caring for the first wave of diagnosed cases of SMS, Ann used to run a support hotline out of her own home, and would stay on the phone with frustrated and confused families, she would do what she could to navigate this syndrome with them. She continues to this day, despite her insanely busy schedule to make herself available to families in need. It's truly an amazing thing to get to speak to someone that intimately knows SMS. Let me say it again, it's absolutely incredible to have that kind of access to a Doctor that not only cares deeply about the person affected by Smith Magenis Syndrome, but also about the family. She has a warmth and a humor about her that makes you feel like, it's all going to be okay, we are in this together.

After speaking to her and hearing that she quite liked the way Cole and I had been handling some of The Littlest Buddies rougher moments in life, she felt like some of this information could possibly help other families. I have no idea if anything we do could help. It all seems silly when we do it, but it has worked for us. I think like most families navigating life with a person who has special needs there are many times throughout a day where you have a moment where you think to yourself, I can't believe this is what I have to do to keep things calm.

The Littlest Buddies entire life is based on rigid expectations that he places on his day, his night, his rituals. If something doesn't go the way he had envisioned or prepared his mind for, there is no telling what his reaction will be. His tantrums tend to stay on the light side, meaning just a lot of crying and carrying on, a small amount of hand biting and slapping, but nothing bloody. We have been lucky in that way. In our family, one of the things we were having trouble with was the "pop in" but really whether you have a special needs child in your family or not, who really likes a "pop in?" The older The Littlest Buddy gets the more he likes his day to go exactly the way he expects it to. So a sudden unexpected visit can really rile him up, so a quick impromptu visit would often leave our house in complete chaos for a couple hours. Most people know at this point that they have to call ahead, and it is very simple to just get LB excited about a visitor over the phone, this way he has time to prepare himself for a new person. We put him on the phone when they call, and he invites the person over, and it puts him at ease. As for the people that still manage to just randomly stop by, we created the do over. It started as a joke out of pure frustration. Cole had come home from work early, and just walked in the door, and LB freaked! He is slapping his head and saying, "no, no, no, no, no, no, mama." So Cole just looked at him and said do you want me to do that again? and he said "yes" through a bunch of tears. So she just walked right back out the door, stood outside for a few seconds, and I said: "I think Mama is home?!" and then she walked in the door, and he was happy, and yelled out, "Mama's HOME!!!" As genuine and sweet as if she had just appeared for the very first time.

So we tried this with anyone that popped in on us. We ask them to please get out of our house, and go back outside and we do a "do over." How this actually works I have no idea. I mean he is standing there and watches the person walk back out the door, stand outside on our steps and wait, and then walk back up and knock again. The key here is that we all pretend like this person just showed up, so we are all like. "OH hey!! Look who is here." Whether it makes sense to us or not doesn't matter, it calms him down instantly, and it's just based on him knowing exactly what will happen, and then it happening exactly that way.

Here is an example of how important expectations are to The Littlest Buddy. At night when he is the most anxious and wired, he looks for anything he can do to keep himself calm. He gets his calm of course from knowing the result of an action, so he started clicking his light switch on and off. Each time he clicked the switch, the light did exactly what he expected it to do, it went on and then off, and so then he decided this felt so good and soothing that he started doing it hundreds of times in a row. Non-stop. For hours. This felt better to him than sleeping did. So the lure of the switch, the comfort he felt from that clicking was better than sleep. Nothing we could say to him would make him stop doing this. I would lay in bed wide awake night after night listening to him click the light switch on and off. I finally had to go the hardware store and buy covers for the light switches to keep him from doing this so we could all sleep again.

As frustrating as it was, it gave us the best insight into what is soothing to him. It gave us the ability to manage his days better, knowing how crucial cause and effect is to him. Looking at his days with a set of his expectations attached to it is a huge alley to us. So really it comes down to planning and communicating well. A reoccurring theme amongst SMS families and something you often hear families vent frustration about is the feeling that they are "trapped" in a routine, or they are a "prisoner" to the schedule, they can't escape the rigid schedule they have to keep to avoid major disruptions, so simply making lists with LB and helping him plan his week, and then being sure to follow up on the planned events is a major help. For every new experience we build into the day, it has to be balanced by a certain amount of his comfort activities. Visual lists, and calendars, and post-it notes make these new things real events that he can prepare for. Simply building verbal excitement and lore of a proposed new thing doesn't do as much good, as showing him on a calendar, or going over a list he helped to write. The Littlest Buddy also has a cork board with all of his favorite things attached to it, Cole painted the words to his favorite things on wooden door hangers, like "ice cream" and "Wii Bowling" and "Swimming". We found out that having a physical representation for the things he likes to do was key in using his likes and interests as an alley to navigate the day. If he can physically see it be taken away for bad behavior, or granted a privilege for good behavior, he is more careful not to lose it, or diligent to gain it back.

This all feels preachy to me, writing this stuff out, anyone with a special needs child has their own way of managing a day and a night. What works for one family, will never work for another in most cases, because the kids are just so different. I do know that all of this boils down to making sure that a balance is found, and creating as many happy moments in a day as possible. The laughs, and the hugs, and the sweet moments that occur in a day are so essential to sanity and strength.

Most people have the ability to recover from broken promises and disappointment from unfulfilled expectations, regardless of how easy it might be for us to move on from something not going our way, you still feel it in your head and your gut, and it stays with you. I am still feeling like a huge failure from a built up expectation I had from a job I lost, it has been months, so I keep all of that in mind when dealing with LB. When his emotions seem the most illogical and frustrating, I just remember that he is acting out emotionally exactly what I am feeling inside my guts when something I was really planning on and hoping for doesn't happen. My personal reaction to it, just might be to be kind of a dick, to be silent, stay in my head, be grouchy. LB just happens to react with emotional outbursts that he can't control. So give him something he can control and it calms him down.

I mentioned at the top I would say more about the charity album "Do Fun Stuff" it has almost been a year since the release, and after that one year mark, I will be donating the total amount of money earned to Dr. Ann Smith to help fuel along a case study she is in the midst of. It feels so tremendous to be able to hand over funds that will go towards hard research. So there is still a little time left before that album turns one, and if you are just now learning about this album. Please take a visit and you might just like the album enough to buy it anyway, regardless of the charity. There is also a place to make a separate donation of any desired amount located on the official "Do Fun Stuff" widget, it is a link to PRISMS who has been accepting donations on behalf of this fundraising effort. it's right there at the bottom of the monster, on the right side. Every little bit helps, and every cent goes to the charity.

For those of you who helped make this album a huge success, and helped to spread the word, a "Do Fun Stuff Vol. 2" is indeed in the works. I decided that I wanted to see what a release would do closer to the holidays :) So stay tuned as that develops.

If anyone is curious about how other families are dealing with SMS you can also read HERE about a wonderful family that is figuring out these challenges as they go day to day and doing a really fantastic job of keeping their spirit and making their kids lives as rich as possible. Their Little boy is around LB's age and it is spooky sometimes how much they look and move the same.

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