I am continually amazed by the people and opinions I come across in this journey of ours. I truly had this image (before I ever started) that every professional I would have to work with, would have the best interest of every child in mind, they would know what needed to be done and move forward. While I truly believe that those in the medical and educational fields do mean well, I am amazed at the double talk, I constantly get. Everyone wants to undermine the other person and they contradict themselves wildly. That is just appalling to me.
Several months ago, I approached Sam's preschool teacher with the idea that he could have autistic tendencies. I have noticed things from the time he was little, but whenever I bring them up, people often brushed them aside. This time, I pushed harder. I requested an evaluation be done. But I didn't stop there, I went out and set up my own evaluations to be done privately. I wanted to cover all my bases.
The first evaluation to come back was from the school. We didn't get the initial results from the school psychologist, but rather from the preschool teacher basically telling us that the testing showed he was fine and that he wasn't on the spectrum. I was so excited! I told everyone. A week later, we got the results from the private psychologist. He diagnosed Sam with PDD-NOS secondary to his xxyy syndrome. We took that information back to the school only for them to try and undermine what this Dr. from the University of Utah had told us. They said he used outdated tests and basically that he was either wrong or it didn't really apply to Sam in the classroom. The school pyschologist actually told me that his social problems were not a big deal and didn't need to be addressed now, however, they would keep that diagnosis on file so that if he struggled with friends at a later date, then they could see about doing something about it. What? That makes no sense to me.
Then there is the ongoing debate for children with ASD (autism spectrum disorder) and other developmental delays on whether they should be taught with a behavioral approach or a sensory approach. The school (at least in our district) will only approach it from a behavioral approach. However, new studies show that if you can reach a child at that core level and work on fixing what is causing the problem, you have a chance of building a real relationship with them and helping them to develop into higher levels. The behavioral approach mostly teaches patterns and scripts. I'm sorry, but I want more for my little boy. I don't want him to go through life with memorized scripts to say in social situations. I believe, with all my heart, that he can have more! I want him to feel and share love! I want him to experience this big, beautiful world in the way that most of us are able to and take for granted.
I have been reading "Engaging Autism" by Dr. Greenspan. It teaches DIR or the floortime method. When I asked the school psychologist about her thoughts on this method, she told me she didn't know anything about it. Am I crazy that I don't want my child to go through a system that is not even willing to look at other types of beliefs and methods? Am I crazy that I don't want something so strict and structured that it forces my child to behave perfectly within their model and completely fall apart at home or in outside social situations? On some levels, Sam has improved over the past year in school. They say he is perfect in their setting. However, his behavior at home has completely deteriorated. His relationships with those closest to him are distant, most the time. He pulls away from my touch 90% of the time. He rarely makes eye contact with me and he has yet to spontaneously express love to me in any way. If I tell him I love him, he looks away. I want more, and I refuse to put up with what this school is offering. I truly don't know how I will accomplish this. There is an amazing private school that I would love to send him to, but there is a waiting list and expensive tuition. But, I want something different then what the school is telling me to do and what they are offering.
I know I will find the answers, and I know there will be little moments of pure joy because I am willing to fight so hard for him. One thing is for sure, I am done fighting with "the system". I only have so much energy. I choose to put that energy into Sam and my other children. I won't spend another precious bit of my time on a system that is broken and failed.
Wednesday, April 28, 2010
Tuesday, April 27, 2010
Long overdue...
Well, I don't have any pictures for today, and I know that I am over a month late in updating. And I will be honest, I don't know that I have anything of interest to say, but at the end of the day, I need to write about so many things. Especially after days like today, when I feel like the weight of the world is on my shoulders, and I can hardly breathe from the weight of it. I realized that I need to write it out. I need to keep a record of how hard and yet beautiful this journey can be. There is just one thing, if anyone besides me reads this, I am not writing this for sympathy or pity. I don't need anyone feeling sorry for me on tough days, because this is just my life, and I have to find the joy in it, any way I can. And part of finding that joy is recognizing the painful and dark days. There really can be no light without dark. So, please know that my ramblings are for me, more than anything else. Maybe someday, when I am better at handling these challenges, I can look back to days like today and see the progress I've made.
The day started very early for me. I was tired and went to bed early last night, but woke up at 2 a.m., wide awake and thinking about all the things I can't seem to get done during the day. I think about the visiting teaching appointments I meant to get made, I think about the kids' bikes I keep forgetting to drop off and get fixed or the eye appointment for Abby I need to get made. I think about how I didn't get my exercise in for the day nor did I eat the things I had planned to eat in order to lose some of this weight. The list goes on and on. And when the rest of the world is sleeping and infomercials are the only thing on t.v. these lists seem even more impossible then they do in the middle of a crazy, busy day. Finally at about 6 a.m. I was able to doze off. 45 minutes later, I was awakened by Sam, slamming a door and hurrying down the stairs with Chipper's monopoly game. He had wanted to play it the night before, but I told him to wait. He never forgets those things, from the night before. The first half of today was spent trying to appease his obsession with wanting to play a game. We don't have any that would be appropriate for his age, and I didn't feel like another trip to walmart just to appease it. Yesterday the obsession was bubbles, and there was no rest until I bought new bubbles.
By 10 a.m., as I tried to spend a few minutes on the phone making visiting teaching appointments, he found a marker and in just seconds, he had drawn on the couch, the bean bag and the piano. When I took it away (while still maintaining a conversation) he ran upstairs screaming and locked himself in the bathroom. As I tried to get the lock open, he pounded on the wall until Noah woke up. Noah had only been down for a nap about 10 minutes. By the time, I got Noah out of bed, Sam was back down the stairs and outside on the trampoline. It was exhausting and I feel so out of control. This is a normal day for me. I don't get anything done I just do damage control. I feel like he is running the household and we are all on pins and needles, as we ride out the meltdowns, try to keep him from running away and don't even get me started on what it is like to leave the house.
I was very happy when that bus pulled up, just after 12. I sighed a breath of relief and collapsed on the couch. I had no energy for the growing list, although I was able to get the bikes to the bike shop and my appointments made. He was gone for 4 hours, and by the time he returned, I felt better. I love him so much, he just wears me out. I feel like my other 5 children get the worst of me, because I have nothing left. I told John today that I feel like my emotional reserves have even run out. I truly feel so empty and sad. I feel jealous by the smallest things. That is so bad of me to admit. But, I saw a woman out jogging and I felt jealous that she had the time and energy to do that for herself. I can't even shower unless there is someone to specifically watch Sam for me during that time, and even then, I usually can hear him screaming when I get out. I no longer have a life. I feel like I wake up and survive until bedtime and then I collapse for a few hours only to wake and worry and feel guilty about all the things I'm not accomplishing. I hate this so much. I'm tired of crying every day. I'm tired of getting my hopes up about one new thing that might work, only to have it fail miserably. I want to feel normal. I want to blend in when I go out into public. I want to feel happy again. And to add to all of this, we just learned that Sam will not get summer school. So, I will have no break for 3 months. John will be gone some weeks for days at a time, and I will deal with it alone. I know that so many care and want to help, but the reality is I don't even know how to ask. I don't know how to reach out. And I worry that when I talk about these challenges that people get sick of hearing about it. I know that there are far worse challenges in life, and things could always be worse, but for me, right now, I feel like I'm drowning and I will never get out. I also worry that by the time things get more easy and doable, then I will look around and my other children will be all grown and gone and I will have missed so much.
Anyway, I know things will improve. I know I will find answers, because I have to. Life is meant to be enjoyed, and I will find a way to do so. I will find success for Sam and I will find a way to help him without it being all about me. I truly can't imagine how frustrating the world is to him, right now. I'm sure my hopelessness can't even hold a candle to his.
The day started very early for me. I was tired and went to bed early last night, but woke up at 2 a.m., wide awake and thinking about all the things I can't seem to get done during the day. I think about the visiting teaching appointments I meant to get made, I think about the kids' bikes I keep forgetting to drop off and get fixed or the eye appointment for Abby I need to get made. I think about how I didn't get my exercise in for the day nor did I eat the things I had planned to eat in order to lose some of this weight. The list goes on and on. And when the rest of the world is sleeping and infomercials are the only thing on t.v. these lists seem even more impossible then they do in the middle of a crazy, busy day. Finally at about 6 a.m. I was able to doze off. 45 minutes later, I was awakened by Sam, slamming a door and hurrying down the stairs with Chipper's monopoly game. He had wanted to play it the night before, but I told him to wait. He never forgets those things, from the night before. The first half of today was spent trying to appease his obsession with wanting to play a game. We don't have any that would be appropriate for his age, and I didn't feel like another trip to walmart just to appease it. Yesterday the obsession was bubbles, and there was no rest until I bought new bubbles.
By 10 a.m., as I tried to spend a few minutes on the phone making visiting teaching appointments, he found a marker and in just seconds, he had drawn on the couch, the bean bag and the piano. When I took it away (while still maintaining a conversation) he ran upstairs screaming and locked himself in the bathroom. As I tried to get the lock open, he pounded on the wall until Noah woke up. Noah had only been down for a nap about 10 minutes. By the time, I got Noah out of bed, Sam was back down the stairs and outside on the trampoline. It was exhausting and I feel so out of control. This is a normal day for me. I don't get anything done I just do damage control. I feel like he is running the household and we are all on pins and needles, as we ride out the meltdowns, try to keep him from running away and don't even get me started on what it is like to leave the house.
I was very happy when that bus pulled up, just after 12. I sighed a breath of relief and collapsed on the couch. I had no energy for the growing list, although I was able to get the bikes to the bike shop and my appointments made. He was gone for 4 hours, and by the time he returned, I felt better. I love him so much, he just wears me out. I feel like my other 5 children get the worst of me, because I have nothing left. I told John today that I feel like my emotional reserves have even run out. I truly feel so empty and sad. I feel jealous by the smallest things. That is so bad of me to admit. But, I saw a woman out jogging and I felt jealous that she had the time and energy to do that for herself. I can't even shower unless there is someone to specifically watch Sam for me during that time, and even then, I usually can hear him screaming when I get out. I no longer have a life. I feel like I wake up and survive until bedtime and then I collapse for a few hours only to wake and worry and feel guilty about all the things I'm not accomplishing. I hate this so much. I'm tired of crying every day. I'm tired of getting my hopes up about one new thing that might work, only to have it fail miserably. I want to feel normal. I want to blend in when I go out into public. I want to feel happy again. And to add to all of this, we just learned that Sam will not get summer school. So, I will have no break for 3 months. John will be gone some weeks for days at a time, and I will deal with it alone. I know that so many care and want to help, but the reality is I don't even know how to ask. I don't know how to reach out. And I worry that when I talk about these challenges that people get sick of hearing about it. I know that there are far worse challenges in life, and things could always be worse, but for me, right now, I feel like I'm drowning and I will never get out. I also worry that by the time things get more easy and doable, then I will look around and my other children will be all grown and gone and I will have missed so much.
Anyway, I know things will improve. I know I will find answers, because I have to. Life is meant to be enjoyed, and I will find a way to do so. I will find success for Sam and I will find a way to help him without it being all about me. I truly can't imagine how frustrating the world is to him, right now. I'm sure my hopelessness can't even hold a candle to his.
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