Wednesday, September 15, 2010

To blog or not to blog

So, it has been months since I last blogged. My husband is not in favor of my blogging and we had a discussion about it. My purpose for blogging is for other parents of Autistic children to read and hopefully feel they aren't alone. Also, my blogging helps me to feel that I am not alone because I know that there are other people in the Autism community that will find this and connect.

Alone, that is what I feel a lot of the time. In addition to really having a lot of alone time when the kids are in summer programing or are at school, I am often alone after the kids get to bed and my husband is on a business trip. I find myself angry a lot and not able to focus on positive things because I don't have a specific purpose while alone (or something to do that would not let me be alone).

I posted one day on Facebook that I am working on "acceptance". This is an ongoing struggle on many fronts. Is it acceptance of Alex? Does his disability require acceptance from me, family members and maybe eventually himself? Is acceptance of this disability ever something I can attain and should I be expecting that of others if I myself am having a hard time with it? Acceptance of being a stay-at-home mom and not able to find a job outside of the home? It has been 2 years of looking, preferably for a part-time job, and having people slam doors in my face...even by "my church". Acceptance of the way people have reacted to Alex and our situation or, even more so, not reacted. Acceptance that those I thought should have been there for me/Alex/our family haven't been there for me and will not be there. Acceptance of the continual disappointment. Acceptance that Autism is something Alex and our family will always live with.

So, that is where I am right now.

Wednesday, June 30, 2010

Summer is in full swing

It is hard to believe that tomorrow is July! Why does it seem that summer flies by when you are old but as a kid it seemed like an eternity?

June for Alex was a few days at TCEP a childcare place we use some during the school on a drop in basis. They do great things with the kids, including field trips! Yesterday they went to Ohio Caverns. Cosi is in the near future! For two weeks in June, Alex participated in Stagecrafters camp at the High School. They did a fabulous job learning Alice in Wonderland, Jr. At the end of the two weeks there were 3 performances. It was a rocky start at first but soon, Alex got the hang of it. The best, and worst, part was when they got to the unbirthday party song. Alex was in the group of kids playing musical chairs with Alex. K and I looked at each other and could almost not watch. We know Alex's competitiveness and worried that there could be a meltdown right on the stage. Wouldn't you know that his "part" in that scene was to pull the chair away from Alice at the last minute and win!!!! I'm wondering how long it took the directors to figure out that Alex should have that part!

July will involve more "tutoring" for Alex along with a camping family trip for a few nights. Both kids are also doing tennis in the park and enjoying that. Soon we will be buying school supplies, backpacks and shoes!

Wednesday, June 2, 2010


Well, it is almost here....summer....the weather is great and how amazing I feel after a few days at the pool. The kids have their last school day tomorrow. I have to say that I used to feel very anxious about the end of the school year. I remember feeling so lost after Alex was diagnosed not knowing what to do with him once school let out. He was too young for "camps" and it just seemed we were getting into a routine with school and it was out for the summer. Not to mention the fear of regression.

My husband and I have always worked hard to get him programing throughout the summer including camps and therapies. This was not easy nor cheap but we did it. I feel now that we are on a summer auto pilot. We have out local childcare place - yeah TCEP - where the kids can go for a few days a week....we have our local pool....we have local teenagers that can help out when I need them....oh, and who can forget Mrs. Walker who wants to work with Alex throughout the summer and refuses to let me pay her. WOW!

So, that leads me to talk about my employment status, which is still unemployed :( I feel like I have the support structure there now to help me go back to work but it hasn't happened yet. I have wonderful people in the community working to find me job leads. I have a promising lead that I hope works out soon. Either way, I'm just going to enjoy my time with the kids this summer and hope it all works out in the end.

So tomorrow is the last day of school and I'm not anxious at all...We have come a long way!

Wednesday, May 12, 2010

A new season?

So, Mother's Day went pretty well this year. My hubby and the kids did well pampering me with meals and gifts. The biggest part was that I didn't cry at church!!! Simone loves to make me cards and can't wait to give her gift so I got it the day before :)

Alex has been doing much better at school lately and seems to be less antsy. I am so grateful for his teacher taking the time to work through hard times and communicate with me about what is going on. I also can't say enough about his teacher from last year...Mrs. Walker....she took my SOS call and went to work. She's been keeping Alex after school occasionally to work with him on his reading and one day when I was just stressed out (and he was too) she kept him for 3 hours - WOW!

Mom is still trying to decide what to do with her life. I feel as though I am verging on a new season of my life where I should do something for me. I thought that something could be a part-time job but maybe it is a full-time job. I've put my name in on a few things and am hoping that the right thing happens. We shall see. I have had many people tell me that they see me everywhere in the community, which makes me happy. I've enjoyed getting to know Tipp and in only 18 months feel like we have made it our home.

As I write this I hear Alex singing all the songs from the Kidsbob 17 album....he is talented! Must get that from his father (well maybe the voice but his moves are mine!)!!

Saturday, May 8, 2010

Mother's Day is another Mother's Day. This day over the past few years has been difficult for me. Usually go to church and hear this message about being mothers, etc. and cry. I cry because I feel like my mothering is challenged more than other mothers. I feel like I don't do a good job with the mothering (see last post). I cry because I feel like the support from the mothers in my life hasn't been there for me while I am being challenged. I feel bad that I want time to myself often on Mother's Day and my wonderful husband has given me that a few times (taken the kids away so I have some quite time). Why would I want to not be a mother on Mother's Day...??? Yet, I saw a mom post on Facebook that she wanted a house where the kids didn't argue so taking them away would be the answer...maybe I'm not the only mother who wishes for that on Mother's Day.

This mothering thing, specifically the mothering of Alex has taken a lot out of me and required a lot of me specifically the last 7 years. Sometimes I am just so tired/worn down. I even feel like screaming "Is it my turn yet? When do I get to do something for me???" I also wish for more than one Mother's Day and yet, wondering if mothering every day is just that...Mother's Day.

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!

Wednesday, March 24, 2010

When things are good...when things are bad...

So, it is hard to believe it is closing in on the end of another school year. Wow! Time does fly. Last night we watched Simone perform on stage at the 1st grade program at school. She looks soooo old! She recently got her ears pierced and is forever keeping me on track. It was such a nice program and wonderful to see her enjoying her performance - she gets her performance skills from me I'm sure!

However, the night ended on a sad note. All the kids in the program got/wore cool t-shirts and of course Alex wanted one and obsessed about not having one. He even wrote a letter to Santa asking for one next Christmas. Needless to say I didn't handle it well. I am just so tired of Alex always obsessing about what others have, not winning, not being picked, etc. We had a similar problem with his end of the year program for Upward basketball. Now, I talk about this and people with typical kids will say "even typical kids do this". Well, Simone is typical and she doesn't take it to this extreme! It is draining. He did so well with basketball and to have it end with a program where they picked a few kids to win things was frustrating. All kids got something in the end but of course it wasn't what he wanted :( The worst part was last night ended with Simone giving Alex her shirt because she felt bad for him. Will she have to be the understanding sister that gives up a lot for her brother all her life?

Lately I have noticed that I have mentioned Alex and Autism in public more. Sometimes the reactions I get like "even typical kids do that" frustrate me. Sometimes I wonder if I should just not say anything about it/our situation. Do people really care? I know they don't understand because they aren't living it. Am I trying to educate people who really don't want to be educated? However, I think if people know that Alex has Autism and our family is dealing with this and then they meet someone else who has a child with Autism, maybe they can be a little more understanding and even say "hey, I know this family, do you know them?". Hmmm.

I'm still wondering what to do as the mother of Alex during the day when he is at school. Things are good now....however, things can be bad on a certain day or maybe even during a school year. When things are good they are good. But like last night and after the Upward program, things are bad. Will I be too stressed out to be patient (people say I am patient - somehow I don't see that as one of my character traits) if I get a job outside the home. My husband thinks I need a job for about 15-20 hours a week. I guess when the right opportunity comes along, I just need to be open to it and we'll see. I need to try to keep Autism from making me not do something. I need to stop worrying in the future things could be bad or that I'll have to give that job up. I should work while it is good and deal with it when it is bad. It is what it is and will always be with us.

Monday, March 1, 2010

No more excuses....

So, every time I login I realize how long it has been since I have written anything. No more excuses! This winter has been interesting. Although the kids are able to keep themselves occupied well and really have been playing together well, the many, many snow days as well as Dad being out of the country for most of that time has worn mom down!

I keep trying to decide what to do with my life while the kids are at school. Do I really need to do something for pay? Should I just enjoy this time and continue with my volunteer activities? I have recently been appointed to a local board seat and am going on a local radio/TV program as the news girl once a week.

I say "no more excuses"...does that apply to mom? I feel like I often use Alex as an excuse as well as my husband's travel for not working. Would I feel better/have more self esteem if I worked outside of the home? Can I handle full-time? No more excuses. I'll keep my eyes open for opportunities and if the right fit comes my way, I 'll jump on it!

Alex is playing Upward basketball and is doing great. It has been awhile since he has played basketball. He is really picking up on the defense and scored multiple times his last game!! He is soooo competitive though! I have no idea where he gets that from...!!?? He is doing well in school. I see him taking more interest in reading but still doesn't want to have anything to do with it until just before bedtime when we have our reading time. I do notice him taking more chances with his reading instead of asking us for help on words. The first day back to school after many, many snow days though was hard. God Bless his principal when the lunch menu that they had initially put out was changed due to all the snow days and the menu item the day they went back changed. He had the kitchen make Alex a piece of pizza because after all "the menu said pizza"!! He is also getting more social with adults like at swim practices/meets for his sister. He is, however, repeating TV shows/movies that he has memorized. He starts by saying "can I tell you a story?". He is also still really obsessed with what time things are like what time to leave for the bus and when basketball practice is. He gets really upset, repeats over and over that we will be late, especially for basketball.

Simone is finishing her indoor swimming season. At the last meet we had her try a 50 meter where she has to go down the pool, turn around and come back. No flip is required but wouldn't you know that little stinker did a flip turn!!! She rocks! Mom and Dad couldn't be more proud of her! She loves to read and tell stories and write stories. Her sentence structuring is awesome! She is our child that always has ailments...this hurts/itches, has a cut, etc. These often pop up when it is time for bed.

Husband and I did have some date time last night. We saw Wicked, the was beyond amazing! We had such a great time! Mom was still recovering from a cold that lasted almost a whole week so there was no smooching - ha!

Tomorrow I am off for some birthday party supplies for both Alex and turns 9 and the other turns 40! I can't believe Alex is 9. He has comes so far in his 9 years. Wow! Love that kid!

Sunday, January 17, 2010

Wow! I just read through again my last blog, which sadly was too long ago! That was some heavy stuff I wrote. Since that time, I have been actively trying to find that special employment. I declared 2010 as "The Year of Cara". I have had some interviews and possible job leads but only one recently that I am excited about. I am waiting to see if I am hired.

We visited a "new" church today. We have been there a few times already. I really needed to hear about "what's on your mind". I struggle sooooo much with my thoughts controlling my heart, body, actions, etc. I am a "thinking" person and find myself worrying a lot - especially about Alex and my husband's travels. That is why momma needs a job...keep me busy! I cried through the end of church and I cried at home. Now, I am feeling that this blogging stuff shouldn't happen every couple months. It is good for the mind and soul!

Alex had one of his best Christmas breaks. He was able to tell us when he had enough of the big family Christmas and I took him home! Thank God for Autism! My excuse to leave a big family gathering!!!!

He was a bit whiny getting back to school after break. He came home many days saying "I don't want to do 2nd's too hard...I want to stay home with you and help make lunch". He had a page of math homework (front and back) and complained about how it would be too hard. He kept saying it over and over and I just kept working in the kitchen ignoring him. Before I knew it it was done and done correctly! I think he likes to just say things over and over as a calming mechanism. I guess what is on his mind just comes out over and over....interesting!

Simone has been busy with swimming. We have attended 2 swim meets where she has placed in both her individual events at both meets - getting 1st place in both events at the last meet. She enjoys practicing a lot and the meets are getting easier for her, especially now that she has a DS like all the other kids. "Mom did you know that there were thousands of kids in Pictochat room A at the meet?"

I just read a friend's blog about her training for triathlons and I am motivated today to go for a run. I haven't been feeling well - having episodes where I am dizzy so I'm going to take it slow. My doc says I have a virus that is going around and gave me an anti-viral medicine. We'll see if it works. I still had a dizzy spell getting up in the night last night.

Looking forward to good news this week!