What the warm days bring....

I have been finding it more and more difficult to find time to blog. I have things that come up and find myself "writing" in my head, but don't actually get it onto the computer. My work as an advocate has picked up, tis the season, IEP season that is. I know the feeling all too well. Spring always seems to bring up my own anxieties. It may not even be about school, but there always seems to be a combination of stresses that bring out mini panic attacks.

I love the beauty of these spring days, the warm sun finally showing itself after a long winter. But those high 60 degree days with spring flowers blooming also remind me of how much my mother loved those days. It was during these kind of spring days that we also found ourselves in the hospital with her. It was 1993, the year that she died. I remember one of the days my husband and I left the hospital for a few hours. We were driving through the beautiful neighborhood surrounding Blodgett hospital, the sunlight flickering through the trees. The wide boulevard with huge homes flanking either side. It was jarring after spending days and nights at a vigil by my mothers bedside. I already knew that she wasn't really with us anymore, but it wasn't quite "over". I was in a haze from lack of sleep, only 25 years old, and knowing that this would be last time of seeing my mom who was only 20 years older than me. I'm an only child so we had a particularly close relationship. I remember the feeling more than anything. The confusion over feeling the sunshine, the warmth, the rebirth of trees and flowers, but the loss of my mother at the same time. I said aloud, "this is her favorite kind of day" while looking out the car window. Words that I think every year and cause the heaviness in my chest. The toxic combination of loss and panic and sadness, that I often wonder if it will ever go away. It seems to be compounded by the stress of planning for another year of Daniel's school, the crazy schedule at the end of both children's school year, and the promise of summer. What I can't figure out is why I don't see it coming. What can I do to prepare myself?

I have finally thrown down the gauntlet and started exercising again. Not only have I been carrying around an extra 15 pounds, but the feelings that I carry start causing pain in stress points in my back and shoulders. I remembered back to 5 years ago and a Dr. had talked about fibromyalgia possibly beginning. He talked about exercise being a great way to combat the stress and pain. I jumped into it completely and started to feel better, physically, than I had in a long time. When I exercise I do it all or nothing, much like everything else for me. I don't have much middle ground. I can already feel some of the pain lifting from my back. I need to keep it up, but it is definitely taking away from other things, like writing that are also therapeutic for me. Today I chose to stay home from exercise and write this. I didn't have any idea what I would write about when I sat down, sometimes I'm surprised at what I start typing. The exercise needs to continue. It is a great stress reliever.

Writing this also helped me come to a conclusion about summer. Yesterday was the last day of Daniel's Kinesiology swim class. He had a wonderful coach this semester. J, I'll call him. He taught Daniel the breast stroke, they swam LAPS! It's so good for Daniel to get that physical exercise. With the extra anxieties he has, I know that we need to continue the exercise for him too. Maybe it will help him even out his system also. But we all know how difficult it is to get our kids to do this sort of physical exertion. I'm thankful that swimming is a way for Daniel to do this. After swimming yesterday, J, offered to continue to work with Daniel through the summer, either swimming or LIFTING WEIGHTS! My first word was "interesting". He thinks it would be really beneficial for Daniel. His body is so huge and strong, but he could use more toning. I can see how it would help his swimming and possibly help him get more in touch with his body. If anyone could do it, it would be J. They really bonded. After writing this I decided that I'm definitely going to take him up on his offer. I was explaining to Todd and Zachary last night what J's idea was. Zachary looked at me and said, "that's what we need, Daniel to be STRONGER, if he hit me he'd kill me". He was joking, sort of. He doesn't hit Zachary but he will scare him and be aggressive. Zachary noted that Daniel hit his own leg in the car yesterday so hard he yelled out "OUCH!!" afterward. What would happen? Would the added strength be a positive or a negative? Would it help his channel some of his own discomfort and anxiety or make him even stronger and less able to judge his own strength? As usual, I won't know until I do it. That's the way it is with everyone, isn't it?

I can only look forward to summer, hope our plans for next year work out, that Zachary's changing schools next year will be all that he hopes it will be. That the transition into summer will slowly take away the heaviness in my chest. That the spring rebirth continues to bring a new year of hope.

It's the Little Things

Thursdays tend to be hectic for us, schedule wise. Yesterday didn't change any of that. But at the end of the day I had one of those moments that makes you remember just how far you have come. It astounded me.

Our usual schedule is this: Before my first stop I pack up two swimming bags, one for each boy, complete with towel, suit and goggles. I make a snack for each of them and bring a drink. Pile it all into the car and go pickup Daniel in my car at his bus stop. Once I have him, I drive to Zachary's school. Then we drive to MSU to Jenison Fieldhouse for Daniel's swimming. Sometimes my husband picks up Zachary part way through Daniel's swim or sometimes I leave mid swim drop Zachary off at a different location and rush back to get Daniel before he finishes. Then when all is said and done we go to dinner. It is a carefully choreographed dance that needs precision timing to pull off. But it works for us.

I was tied up at the post office, literally. I could not get out of the parking lot. (Happy tax day!) I admit this is my own fault by waiting until this time to put my state taxes in the mail, but it is what it is. I was panicking thinking I wouldn't get to the bus stop on time. I barely made it. Daniel got in my car, I asked how his day went and he said very calmly and matter of factly, "I was a little stressed in computers today."

me- "Oh, I'm sorry, what made you stressed?"

D- "something disappeared from my screen" (still calm and not reliving it before my eyes like used to happen. He'd be back in the moment and be reliving it. I believe it has to do with how his memory works.

me- "I know how frustrating that is, I get upset when that happens too."

And that was it. We drove to Z's school and got in "the line". At some point Daniel usually starts escalating and worrying that he'll be "late for swimming". We do this EVERY week and every week he worries and frets and stresses about how many cars are in line. He began again and I reminded him (as always) that we don't have to be to Jenison until 4:00 and we have at LEAST 20 minutes. I remind him to look at the clock. But this week, he calmed down.

Next phase, we arrived at Jenison fieldhouse and waited for his MSU student to arrive. And we waited. And waited. I asked the professor if he had heard from Daniel's guy, he had not. Daniel was pretty patient. He looked at me and said, "is Josh sick?" Which was a great question. I said I wasn't sure and how about he go change and wait on the bench in the pool area. (this has never happened before) We went to the pool. I was chatting with my friend and looked down (I'm in a balcony) and Daniel was quietly sitting on the bench, by himself, holding his goggles, waiting. It was 4:15 by this time. No Josh. I yelled down to D and told him he was doing a great job waiting. Then I yelled to the teaching assistant and suggested that maybe???!?! he wasn't coming and to get Daniel in the pool with someone else. He did, although it took 5 more minutes.

It crossed my mind that many things had interrupted his schedule and now he'd be swimming with a different coach which would mean a different routine in the pool. I tucked that thought away and resumed my chatting and waited for the anxious yells to come. But they never did. Not once.

After swimming he came out dressed and said, "why didn't dad pick up Zachary?" who was standing next to me. I said Zachary was really tired and didn't feel great and was skipping swimming today. This alone, in the past, would have sent him through the roof. He would have cried and been "worried" and said he missed it etc etc. Nothing. We were walking to the car and he said, "now we are going to Spartys" a cony place Daniel loves, and I said, "nope we are going to Olgas that's where I told dad we'd meet him". Nothing. Just an "ok".

It was only then that I thought of the huge number of things that went "wrong" on that day. Previously any one of those changes would have set him off to the point that he would have had a terrible night and never recovered from it. But he endured all of them, in stride. These are the little things that make it so difficult for families with autism. Life happens. But when it does it can be so upsetting for our kids that they can't take it. He was having a good day, but I realized in that moment how far we have come. I was thankful that all of the work we've put into helping him deal with his days has paid off. We aren't done, but it was so satisfying to know that HE felt more relaxed and able to deal with the changes. The daily things we say to him to help him through the stress are working. He's maturing, he's dealing. It made for a pleasant day. It felt....normal. It was nice to flash back and see how far we had come, once again. It made me smile.

Different not Less

Those are the words that rang throughout the new Temple Grandin movie currently playing on HBO. It is On Demand, if you have it, until May I believe. I will watch it again and again. I will show it to my 10 year old. Maybe even to Daniel if I can get him to watch part of it. That would be interesting. I have had the pleasure of meeting Temple Grandin once and watching her speak twice. For those of you who read me who do not have children on the spectrum I'll briefly explain, but I recommend you somehow watch the movie. If you are near me, come over we'll watch it together. But only if you don't mind me crying at odd times. I don't think the movie is sad at all, but it continuously moved me in ways that surprised me.

Temple is a woman with autism, obviously. Not Aspergers, autism. She is in her 60's now which puts her at a time growing up when no one really knew about autism. This makes her story even more powerful. They show Temple's mother (who I have also seen speak) being told it was mom's fault that her 4 year old wasn't speaking and wasn't bonding to other children. She is a very strong and smart woman but the fact that they all rose above this still amazes me. Temple now tours the world talking about her autism and because of her autism can tell you things about her childhood and the way her mind works that is FASCINATING. I have always been interested in her because she is so similar to Daniel. There are certainly areas that are different, but through the movie there were times when Todd and I would both start chuckling at the smallest thing because it was DANIEL. Or I would say what Temple would do next because I knew what Daniel would do. I can't wait to watch it again and again.

Todd and I both met Temple years ago. I'll guess 6 or 7 years ago. She was speaking in Ann Arbor and we drove over to see Temple in the morning and her mother in the afternoon. It was an amazing combination. The child's perspective in the am, the mother in the pm. We were sitting at a large round table as you are at most of these events. We were in the front. After Temple finished it was lunch time and she sat at our table since there was room available. Besides Todd and I everyone else at our table were "professionals". They all immediately started asking her questions. All at once. I remember thinking, what is wrong with you people? You know she has autism right? I use the sentence "I have met her" loosely, because she was sitting next to Todd and when all of the questions started she turned toward him to block out the clutter bombarding her and said, "what do you do for a living?" He answered, "I'm an engineer." Then everyone else was gone for her at that lunch. She talked to Todd the whole time. While everyone else made the mistake of overwhelming her sensory system, Todd was a life line. He was an engineer, she could talk about that. And they did. It makes me smile just thinking about it. No one else was very happy, but really, it was there fault!

Back to the movie. I thought Claire Danes did a wonderful job portraying Temple. The few times I've seen her, her accent, her movements were all there. When Temple would come across something that was upsetting to her or would set her off (seemingly for "no reason" to an outsider), they would flash to the pictures she was seeing in her mind as a way of explanation. It was really well done.

Temple has her Ph.d in Animal Science. She has designed over half of the systems used for cattle in slaughter houses in North America. While this seems an unlikely topic for a movie, I found it very interesting. She loves animals and is completely in tune to them, which they show throughout the movie. It is partially that love that inspires her find a more humane way for them to be slaughtered. Her rationale is they are here, they will be food and we should respect them for it. She does yet she also has the disconnect of the cattles final outcome. Her respect of animals reminds me so much of Daniel. There is a scene where she walks into a horse stall, the horse is going crazy, rearing up and very dangerous. Temple walks up to it and calms it down. She walks into cattle and sees how they move. She lays in the middle of the cattle looking toward the sky like Daniel does laying on the trampoline or sidewalk staring at the sky. She brings calmness to the animals and they return the favor. I have seen Daniel do the same thing with animals. He has no fear, just calm understanding. Lucky for Temple she spent summers at her aunt's farm and this helped her tremendously. Watch the movie!

Most of all, when Temple speaks of the things her mother did for her that changed the course of her life, (not institutionalizing her as recommended, for one) my heart pulled. She knew that had her mom listened to the Dr's her world would have been totally different, but she had never expressed that to her mom. Instead she has a doctorate and helps people all over the world with her public speaking and her books. I had an experience last week talking to a mother for my job that showed me with a few changes in fate how different Daniel's life could be. I am working as an advocate and this woman's story tore me apart. I felt like her son and mine were so similar and yet the point he was at in comparison to Daniel's was very difficult for me to hear. I cried when I hung up the phone. I cried for the mom, who was at a loss of what to do, and frustrated with her school system. I cried for the son, who is being cheated from his potential. I cried for our systems that are still in place in 2010. Temple, born August 1947 (the same year as my parents) somehow overcame that, but we still have some of the same crap going on today. There are still some schools who don't know how to handle the children who are different. Different not less. The children aren't incapable. You just have to take the time to understand them. Figure out what makes them tick. People did that for Temple. Her mom, her aunt and a teacher and mentor. We have given Daniel these opportunities and he has many many people in the schools that know what he can do. It was hard for me to see the similarities and the differences. I guess that was why the movie was emotional for me. I could see the differences but also the similarities with Temple and Daniel. It gave me hope. It also tore me up. But the message that our kids are Different not less, is the most important thing to draw from it. Please watch it and give me your feedback.

Unexplainable Moment

Setting: an evening in Michigan. The first day in the 70's. The kids played outside all evening. Things are winding down and Daniel is in his bedroom, on the 2nd floor playing with his things and going through his nightly ritual. Zachary is getting ready to go to his room. We are in the family room on the 1st floor. He comes to me and says he doesn't like his book he is reading. He is looking for something different. Todd suggests he look for something in Daniel's room. I was a bit hesitant. Daniel does not like books out of order in his room. In fact he knows if anything is out of place, despite the huge amount of things arranged in there. Instead I asked Zachary if he'd tell Daniel for me to get into the shower and we'd figure out something else.

Zachary goes upstairs, delivers the message and goes to his room. Daniel gathers up his things and on the way to the shower, opens the door to Zachary's room.

Daniel- "Zachary, I am taking a shower, DO NOT GO INTO MY ROOM."

Zachary runs down the stairs to me with an amazed look on his face.

Zachary- "mom, you won't believe this, I think Daniel read my mind. He has never told me to stay out of his room, it's like he KNEW that I wanted a book out of there."

I have to say, it kind of gives me chills. I can't imagine he heard the conversation, he was upstairs on the other end of the house. The vents in that area don't lead to his room. Zachary was stunned, amazed and confused....what do you think?