Happy Mother's Day

More. That is the word that keeps coming to mind. I've been thinking about what it means to be the mother of a special needs child. More. I feel like I have perspective because I am simultaneously parenting two boys and while we are a family, the parenting of these boys often seems to be running on parallel planes. We are so often together as a family, but it's different. It's hard to explain.

The other day I was talking to a friend of mine, who recently learned the diagnosis of her beautiful child. It is not on the autism spectrum, but a life long life changing diagnosis. She had just had a walker delivered to her house from a PT to help her child. She said to me,"that's not supposed to be in my house, it should be in someone elses". That keeps running through my head. Sometimes it's hard for us to believe that these are the things we need to deal with on a daily basis. A feeling of how did I get here? Having a child with special needs can at times make you need to dig down deep to find more strength. When I'm talking to teams of professionals who have gathered to talk about my child, sometimes it will overwhelm me to think that all of these people are gathered to talk about my "little" boy. The boy who has had obstacles to overcome since the day he was born. It could be much much worse, this I know, but sometimes I need more strength. The decisions that need to be made for such a simple thing as riding your bike around the block take more planning and more thought than with my other child. You worry more, you plan more, you cry more and the joys, when they come are stronger and more overwhelming. This is not saying that he is loved more. But it is different. My sweet sweet Zachary is such a love, he is just taking a different path than his brother.

I am ALWAYS told, "you have so much patience, much more than I could have". I've said it a million times. I was probably one of the least patient people around. You are not born with a pot of patience to draw from that is one size, with some people having more than others. It is constantly refilled and rejuvenated. I remember the exact moment that I realized that something needed to change within ME. Not within my child who was screaming and hitting and having a complete breakdown. Daniel was maybe 4 1/2 and Zachary 1 1/2. Daniel and I were literally rolling around on the floor. I was trying to restrain him from going after Zachary and he pushed me backwards. I was holding onto Daniel and squatting down so when he got leverage on me we were rolling around his room trying to gain control of each other. I was trying to protect him from hurting himself or his brother. It was a low. I was at a loss. It was a scene that I can picture like I was looking down from above at all of us and it was at that moment that I realized that if I didn't change how I reacted to these situations they would never ever change. I needed to find more patience, more calmness, more strength and maybe even more love. I think I've found it within myself. I'm not perfect and sometimes I still need to walk away to calm myself down to find it again. The reward is that with all of the lows the highs are so very very satisfying. It can be more glorious, more rewarding, and more satisfying. I am a truly blessed mother and wife. My wish is that all of the mother's out there, whether they are the parents of children with special needs or not are able to find all of the things that I have. While at times it can be exhausting, defeating, and maddening, it can also be more, so much much more. I am so very lucky to have the family that I do. Happy Mother's Day.

Autism the Musical

I finally had the pleasure of watching Autism the Musical the other night. I have had many people ask me if I'd seen it yet. Each person who asked me about it wanted "my thoughts" on the documentary. I'm sure it's because the documentary is pulled right from our lives, except for the fact that Daniel isn't in a musical, yet.

I'll start by saying I know each one of those kids. Not personally, but I mean I have known a kid very similar to each of those 11 kids from the movie. I have been around a lot of kids with autism. A LOT. There is one thing that is for sure. Just like all kids, everyone is different, everyone has their own strengths and weaknesses. While I found these kids interesting I wasn't very focused on them at all. Partially because there was never any doubt in my mind that they could pull off the musical. I knew they could. I heard some reviews of people who were amazed it could be done. I wasn't amazed by that. All that the kids need is a leader and someone with the patience, (there is that word again!) and the know how to get something like that done. Would some wonderful artsy person from East Lansing put together a production, please? Daniel would be first in line!!!! Man that kid loves to perform!

Anyway, what I was focused on was the parents. First of all, kudos to them for putting themselves out there for us all to see. At times it was raw. At least to me. It struck a few nerves. First of all the marriages that were disintegrating before our eyes. I read somewhere once that over 90% of marriages end in divorce in these situations. That statistic is nearly as shocking as 1 in 150 being diagnosed with autism! This doc. pretty much showed that. The men and women were so far apart that you could see how they wouldn't be able to find each other again. Mostly, they didn't. Some broke up during the filming and my bet is some of the parents have since divorced. I found the parents reactions from retreating into a depression, to becoming the angry mom who fights all the time very very real. Which one am I? It made me wonder. I think that at times I have been every parent in that documentary. I heard many times the word "crazy" come up. As in Dr's think your crazy, school districts, teachers etc at some point, all think your crazy. Been there on all of it. But the moms are thinking, "I have to do this, I have to do whatever it takes to help my child". Somehow I feel they are judged by this. We are all judged. But my question is, if they don't do it, who will?

I had a soft spot for Lexi. She is 14 in the doc, she sings like an angel. AN ANGEL. She is very echoalic. So is my Daniel. If you don't know what that means, someone says, "it's snowing outside", they say back "it's snowing outside". She imitates people, perfectly. So can Daniel. He can do any voice and have you down pat. It's amazing. He echos videos, books, computer games, constantly. Every single thing is stored away in that brain. Every single syllable. Amazing. He seems to be much more able to converse than Lexi is, but that's hard to know from what I saw. And she is HAPPY. That's what I think of Daniel. Happy. It's the kids who land more near Aspergers that I think have a harder time, as I think you see in the film. It's the bullying, the almost being able to fit in, but not quite. They are just close enough, that they get pushed away because that small amount separates them too much. Like they say, that last step, it's a doozy! That breaks my heart, because they so desperately want to fit in. I loved how "Coach E" wrote the musical based on what they wanted. Wyatt, for instance, talked a lot about bullying, so it became part of the show. With a song called "Sensitive" as his solo. That was awesome and inspiring.

Kids like Neal I find very interesting. How they can't verbalize at all, yet he can type out very deep thoughts and questions. Fascinating. Maybe it's fascinating because it's almost the opposite of Daniel who talks, almost, constantly but has a very difficult time pulling together his own thoughts. I loved Henry. The dinosaur loving son of Stills from Crosby, Stills and Nash. He knows everything about dinosaurs. That's almost an autism cliche!!!

The thing that I most recognized with the kids in the film and my own is, did anyone else notice how they seemed "normal" in the beginning? The use of home movies of these kids as toddlers was brilliant. Lexi and Neal I thought, had good eye contact, they smiled, interacted. Daniel had the same thing. That is what is so frustrating. You had them. They were there in front of you smiling their beautiful smiles at you. Not only with their mouths, but with their EYES. The light was there in their eyes. Then one day it's gone. It goes out. Then the tantrums start, then the withdrawing into themselves starts. The Dr's say "don't worry, it'll pass". "They are manipulating you, they are 2 they are 3". Whatever. You know it isn't true. You know they are gone. But you don't know where or why. Maybe that's why us moms "get crazy". We saw them there, right before our eyes and we lost them. So we think, if we just try hard enough, they'll come back to us. Daniel has that twinkle back in his eyes, sometimes. It isn't always there. Sometimes he is in his own world. Wyatt has a wonderful dialog about this in the film. But when he comes out. What a joy is had!

If I did it right this should be a link to a trailer of the movie. Somehow, rent it if you haven't seen it!


http://www.youtube.com/watch?v=S-B3M_RX6FU

Cabin with Grandpa

After Charlevoix Grandpa Sneathen wanted to take both boys to his cabin. His friend and his nephew would be there also. Over the past few years we (I say "we" meaning Todd) has taken them out fishing many times. Daniel's switch has finally flipped, as we say. He is now a "fisherman". One who loves fishing. He could sit there with his pole on the water all day and be as happy as can be. This is his Daniel's usual way. First, you take him out to try something new. It goes rather poorly, usually. You try again, and again, and again. etc. Then somewhere along the line something magical happens. It all becomes ok. Sometimes, more than ok. It can possibly turn into a life long love for him. As with everything, it just takes him a while. Sometimes a long while. That's why you keep trying. You just have to. That is probably why whenever one of those surveys goes around the internet and I send it out and the question of name one word used to describe me. Almost every single person says PATIENT. It is a virtue after all. But it can also learned. Take it from me. You can learn it. I did. So has Todd. We were probably, at one time, the two most impatient people on earth. My how things have changed. When you hear the word autism said to you, you better dig down deep and find patience, and quick. I'm reading the book Eat, Pray, Love right now. The Italians say each city has a word, then they go on to ask what is your word? One word that describes you. I loved that Rome's word was SEX. I think my word has to be patient. That pretty much embodies our life.

This first picture shows Daniel with his smirk on his face, I asssume, showing Grandpa the fish he just caught. Of course when he swung it around to show Grandpa he hit Zachary in the head with it, which explains the look on Zachary's face. Speaking of patience. . . Zachary is one amazing kid.

So here is Zachary's equal time and his sweet smile showing his catch. Way to go! I believe these were taken on Shupac Lake. My spelling may be off, but whatever. You see, girls are not allowed at the cabin. So I don't know the ins and outs of the surrounding area. This is me crying . . . . not really, but I let them believe they are pulling something incredibly special over on me that just the boys "get" to go there, while mom has to stay home and do things, like shop, for instance. It's so unfair. Really. Do you believe me? But really the "cabin" is a very special place to them. We are lucky to have something like that. How many 8 year old boys do you know who know how to shoot a bow and arrow or a BB gun? Properly I mean, with good old fashion safety instruction? Not many. They get to fish, shoot targets, make fires, ride atvs. All very manly. I wonder if they grunt in the old Tim the Tool man Taylor style when there? Remember that? Very manly indeed. One thing is for sure. They make memories that they will have forever. They are doing something with their grandfather, and usually their father too, that binds them all together. Meanwhile I'm at home, usually cleaning like a crazy lady (vacuuming for sure) and then out shopping for a few days. It's all good. Thanks Grandpa!