Changing Winds

     I have often said, when speaking of my oldest sons moods that "you just never know which way the wind is blowing" or "depending on whether or not the moon and stars are aligned in his little mind" is how the day might go. Since it is difficult to understand how he processes things it is hard to predict how he might react to things or how a day might go. In short, every day is a crap shoot.

     But not lately. I am not sure what the cause is or why there is a change, but I looked at my husband lats night and said "he is simply easier lately". We pondered for a minute what the cause might be. Was it camp? Is it the new school? Is it simply that he is getting older and understanding more. Are his communication skills better and so he finds that people understand him better? Is the change actually in us? Are we calmer? Do we have a better handle on how to deal with him? Is the fact that we have fully accepted who he is and what our life is the reason? Or is it a combination of all of these things.

     A few months ago, maybe even closer to a year, I woke up one morning and realized that my life was difficult. I know that sounds ridiculous considering that everyone else on earth already knew it but it seems I was a little late to the game. What I mean is, obviously I recognized that I had a big challenge in life, one that many others don't face however, I simply thought (and often verbalized) that everyone has to play the cards they are dealt and these are my cards. There are no choices, as a parent you do what you have to and that is it. I downplayed the difficulty of the situation. Not that when issues came up or that when we had a rough day I didn't have my meltdowns or find it hard. It was more that I looked at the total package and spoke about it as if it just was. And then one day, I vocalized that my life was hard. As if it was some great epiphany! I think that was a turning point for me. It was in that moment of fully accepting that it was hard, and that it was ok to say so, that I began to feel more comfortable in my own skin as a mother of a child with special needs. It was in the recognition that it was ok to admit it that I let out a major sigh of relief and probably acceptance. I thought I was already there but obviously I wasn't fully there until that moment.

     So maybe that is the difference, or maybe it is all of the things that I listed above. It is also possible that we are having a good month and next month will be hellish or maybe not. Maybe this is the beginning of the season of change. Either way, I will take it happily and hope I am not jinxing it by writing about it (I know you are thinking that Amanda, so please knock on wood for me as only you can). 

     I found myself at the Apple Genius Bar for the millionth time this month on Monday. While waiting for my turn I overheard Dumb and Dumber (as I have been fondly referring to them in repeating this story) talking. Dumb mentioned that she works with special needs children. Dumber responded that it must be tough to which Dumber replied "yeah it is, the parents are the real idiots though".  I will stop there in my recitation of the story because the language and opinions only get more colorful. If you know me, you know it took all of my restraint not to get up and voice my opinion but since I had already labeled them Dumb and Dumber I decided it was probably a waste of breath. If I can try to extrapolate some wisdom from this eavesdropping (and I recognize that is a stretch) I would say that maybe there is some merit to it. The idea that our children sense our emotions and react is very real. Maybe just maybe my son sees that I am calmer and so he is too.

     People often come to me for advice about issues with their children. Fair warning, it is entirely possible that I give bad advice so this is in no way a suggestion that you ask me, but I think I will give some at this moment to parents who are behind me in this journey. Don't think that just because you are the parent of a child with special needs you do what you have to do. You are selling yourself short. Many people would simply pull the covers over their head and not get out of bed. They wouldn't deal with it. They wouldn't be their childs best advocate. Instead they would cobble along and do what they can. Pat yourself on the back, admit that your life is difficult. Fully accept your child and your situation and in that moment I think you too will begin to feel the season of change.

The Gift That Keeps On Giving

     I have already written about our visit to camp and how amazed and impressed we were by what we saw.  How special and incredible it was to see our son there and watch him thrive. When we sent him to HASC it was with the hope that he would have the best summer of his life. I truly did not understand the impact it would continue to have on our every single day.

     The first incredible moment happened when I picked him up from the bus after camp. I stood there and watched the way the counselors hugged him and didn’t want to say goodbye. The way he smiled and laughed and had an expression of pure joy on his face. The smile on his face when he turned to me and said “how many more weeks until I go back to camp?”

     What has been even more amazing is seeing the continual impact that camp has had on him. He is calmer and easier going. He has something to talk about that he loves other than the mail. He has true friends and people who he misses and can’t wait to see again. He has fun games and activities that he picked up at camp that he continues to play at home, things that really keep him occupied, which is definitely something new. He is easier to transition, he started a new school the day he got back from camp and we had almost no issues at all. He adjusted quickly and easily to both the new school and going on the school bus everyday.  He is simply put, happier.

     But the absolute and truly most amazing gift is the counselors and the people who love him. We had the opportunity over the holiday to travel to Israel. My family lives there and so we usually go twice a year. It is not usually an easy trip to make with Yonatan. It is difficult to take him out of his routine and bring him to a place where he really does not have anything to do but eat candy and hit up all of my parents neighbors for ice pops. Usually the entire trip is about survival and making it to the end. Our last trip there, over pesach, was exceedingly difficult and ended in our shigella nightmare (previously well documented in this blog).

     Not this time! This trip was wonderful. Yonatan was calmer and easier to begin with. However, what I truly attribute our amazing trip to are the incredible people who came to spend time with him. Counselors from camp who just wanted a chance to hang out with Yoyo because to them that is an amazing way to spend a day. The boy who is working with adults with special needs this year and came to stay with us to help out, who opened his heart to Yonatan and had a blast with him. Greatest of all, was his counselor who spent most of the holiday with us because he loves my son so completely and adores him.  Watching them together made my heart sing and my lips smile all day long. So instead of two weeks of difficulty and disaster we had a wonderful trip. Our other children got to go places and do fun things; Yonatan learned to ride the bus in Israel and went on the light rail. He actually did things outside of the house, every day, for the first time ever. And every day my husband and I had an opportunity to see the magic of HASC before our eyes as we watched the most incredible 18 year old boy come to hang out with Yonatan during his vacation because that was really all he wanted to do and where he wanted to be. He didn’t come because he thought he had to or because the food was better at our house than in school. He came each day (even on days he wasn’t supposed to) because he just couldn’t stay away. And it was incredible.

     And so, when people ask me if I got a break this simmer and if sending him to camp was good for us I have a new answer. The break I got was not having him out of the house, because I love when he is home. Our break was knowing that for the first time ever our son was someplace where he truly belonged. He was in a place where he was normal and everyone “typical” was actually “non-typical”. What gives me joy about having sent him there is that for the first time in his life I was able to give him unadulterated happiness and joy and an opportunity to be considered perfect as he is. And that is the break my soul needed.