Friday, April 30, 2010

Why do I feel like a bad mom?

Wow! What a week! Well, maybe more like a two weeks. It started with what I now call the infamous baseball incident. Alex has been really interested in watching our local high school baseball team play. One game, they let him keep a ball that he later slept with and took to church with him. He then proceeded to loose the ball down the sewer drain in the street. One thing led to another in an attempt to console him (including a trip to the local fire station) ending with the team signing a ball for him after a game (they are such wonderful people here...his principal has a son playing on the team and his aide is one of the coaches with a son playing). I felt horrible though for the way I handled his obsession with the ball. Yea, yea, yea, I know that "typical" children have things like baseballs that they obsess over. Those with Autistic children know what I mean when I say they really goes beyond obsession. It simply wears you down.

I think the most frustrating thing is that it seems to me that all of the "dealing" with Alex falls to me. I am the one who is always here. I love my husband but he isn't always here and he wasn't here when the ball went down the sewer. He wasn't here this week when he didn't have his AR book in his backpack and Simone didn't have her lunch and he spilled syrup on his shirt requiring me to bring all of these things to school. The thing I am struggling with the most is the feeling that I am dealing with all this alone. I know deep down that my husband does what he can do when he can do it but others close to me are continually letting me down as well on much deeper levels. So I feel, once again, I am doing it all or more importantly maybe I am doing it alone. Now, it isn't anyone's responsibility to raise my children but my own. Don't get me wrong, I know that. However, if he had cancer, would everyone act as though it wasn't there? Would they think I needed help? Would they ask me what he or I needed? I often wonder.

This week was Alex's first time taking standardized testing. I was nervous myself so I can only imagine what it was like for him and the other kids, teachers and parents. This had to be the worst week for him. Answering questions in a format he is not used to the material being presented in. Not having his normal routine to his days. I tried to be supportive but after being called into the school twice this week and seeing him agitated after school....and today especially looking totally wiped out walking home from the bus stop, I cried. He even let me hold him after school today as he cried (and I continued to cry) and said that he wanted to "quit school". I had to talk him into going to tennis today after school, thinking the release of energy would be good. He was frustrated for not "winning" in their drill at the end of the class. He then wanted to practice by bouncing the ball off the house and lost the tennis ball in the gutter. Again with loosing a ball!!! You have got to be kidding me. Husband again isn't home to help and he goes to bed crying with me not being as supportive as I should have been.

I'm still struggling with the whole should I work thing and the more I think about it the less confident I am that I won't have to put everything on hold again for my children, husband and especially Alex. However, I feel that I am not happy personally/with my identity and where I am and if mom's not happy then nobody is happy.

On top of all of this, I have become obsessed with the new TV show Parenthood. The parents dealing with their child with Asperger's syndrome is sooooooooo us. When I watched this week's episode where she was asked to work for old friend running for elected office like she used to do, she was so excited and after being offered a job, had to turn it down feeling that she needed to be home I found myself sobbing on the couch. I was crying to the point that my husband couldn't stop me. Deep down I know that I am blessed that I not in a position that I have to work but why do I feel so awful that I feel like I can't work?

Friday, April 16, 2010

Are fictional stories always fictional?

I really, really enjoy reading. One of my favorite authors is Jodi Picoult. I had multiple people tell me that I needed to read her new book "House Rules". I wasn't sure I was strong enough to read it knowing it was about a "child" with Autism that was accused of murder. Anyway, what got me to read it was Alex's first grade teacher (Simone's current teacher) calling me over spring break telling me how she sees her (now adult) son and Alex in the main character, Jacob. She said she couldn't put it down and wanted me to read it so we could talk about it. She dropped it off by the end of the week. I was finishing another book at the time and of course as soon as I started I it I loved it!

What I really like about Ms. Picoult's storytelling is that her research makes you feel that this could be a true story. Also, she seems to take on big, often controversial, issues. Lastly, she makes you see all sides of the issue. In this book she does the same. She has each chapter in a voice that is either the mother, the brother, the boy with autism, the detective, the attorney, etc. Anyway, I found that my words were being communicated in this book through the chapters where the mother was speaking. I could hear Simone's voice in the brother's voice and, if Alex could tell us more about how his world is, I am sure that his words would be similar to Jacob's.

So, in this book, Jacob has obsessions. Being Autistic this is no surprise. His obsession currently, with the help of a police scanner, is crime seen investigation. He watches a crime show religiously at 4:30 (Alex watches a kids' game show at 4:30). His therapist is found dead and from there the story goes. I can't give more information without giving it away but I, like my kids' teacher, didn't want to put it down.

I encourage everyone to read this book!

Saturday, April 3, 2010

Major Milestones!

Well, Spring Break is almost over. My husband took the week off and the task to keep us, especially Alex, busy was at hand. After being home a lot for snow days while dad was out of the country, I just couldn't see us spending another week at home. We needed to keep busy. So, we decided to spend a few nights in Columbus at the Fort Rapids water park. It wasn't Florida but there was a lot of water.

The kids had a great time. Simone rode all of the big slides. I was amazed when I went on them that she actually did rides that were, to me, a little scary. Alex stuck with the smaller slides and the area where the bucket dumped on you. My parents had taken him to this water park a few years ago and they said he rode a big ride with my dad but I'm thinking he was scared and has bad memories from least that could explain why he wouldn't go down those slides. I know that he would have loved it if he would have tried because he does big slides at our outdoor pool all the time. Oh well, we didn't push.

The big milestones for him over the Spring Break were trying new restaurants. First, before we left for the water park, we went to see Honk! the musical that my nieces were in. It was a long show but Alex, although antsy at times, watched the whole thing and laughed out lout many times. We then went to eat at Max and Erma's for grandma's birthday. This was the first time we ate out with family that wasn't Frisch's or McDonald's. He ordered for himself - "I want cheese pizza and water with no ice". He wouldn't try their freshly baked chocolate chip cookies, which surprised me, but we know not to push too much. We were just happy he sat there without complaining at a new restaurant especially after sitting so long at the musical.

Then, a few days later, it was on to the water park and 3 days away from home. We ate breakfast in the room both mornings. The first night was pizza from the hotel. The first lunch was McDonald's. Then we met up with my sister and tested him again. We ate at my husband and I's favorite restaurant, Bravo's. Alex had fun playing with the pizza dough and making an animal that they cooked in the fire pit. He ordered again "cheese pizza and water with no ice". However, when the pizza came, it had parmesan cheese sprinkled on it and he started to cry. I felt horrible. We couldn't ask them to make another pizza could we? The waitress was awesome. I explained our situation and she offered right away to have the chef make another one. My husband took Alex to watch the pizza being made and cooked in the oven. This was no kid-sized pizza mind you!! When he came back with his pizza, he proceeded to eat half the pizza - about 4 big pieces!!

Earlier that day, we did have some stress issues. We decided after lunch (before going to meet my sister) to test drive some cars because we were close to some big dealerships. I was driving us around with Alex in the 3rd row back seat and looked back to see he was crying. He was so worried about not continuing our "vacation". He kept saying "we are running out of time, we need to go back to vacation". He was also on edge about going to see my sister saying the same thing about time and vacation. I am amazed though that he could do so well with going to he new restaurant even though he was obviously on edge.

The last day after check out, Simone picked the restaurant where we would eat lunch before heading home. She decided we would eat at Applebees. This was big too because we hadn't tried eating there before and we had to pass his favorite - Frisch's - on the way to Applebees. Again, he ordered "cheese pizza and water with no ice" as well as a side of french fries. He ate and ate and ate. So, maybe we didn't change up what we ordered that much but the pizzas were each a little different (different crusts, etc) not to mention these were places we couldn't get him to go to before without a meltdown!

Since we have been home, there have been issues with repetitive behaviors and recently obsessing about when we are coloring eggs and if there are cracks in the eggs but he has come so far that I can't complain about that.

Tomorrow, Easter, will be another big test - big family gathering at my mother-in-law's with more than 50 people. These large family gatherings have always a challenge. Alex usually tells us when he is ready to go home. We have learned not to push it too long and just leave when we need to. I am hopeful he will eat something there and usually take some food with me that I know he will eat.

The holidays are always stressful especially when there is a big break from school involved. Overall I am happy about how well it has gone. I just hope I didn't jinx it!

Happy Easter!