Its a Great Day!!!

Seven weeks ago, Marissa's school life was turned upside down. Marissa's trusted companion, Sarah, (aide) had her baby a month early. It was clearly unexpected and Marissa was not prepared. The school had done some work and had hired a new aide for Marissa during Sarah's absence. For the past seven weeks, Marissa has hit, laid in the floor, had to be picked up early, lost recess, several time outs, and extreme melt downs. Marissa lets say, hates change. She just can't cope with a world that is not organized or unpredictable. She also needs someone with a sense of humor to help her divert from her bad behavior. In the midst of all this, she also has had some medical issues that we have had to deal with as well as turning seven. (Side note: For those of you who have seen me recently, know I have cut all my hair off- this is why. It was either cut it or pull it out, I chose to cut it). She has been short tempered, hard to soothe and impulsive. We have tried every type of reward and consequence imaginable, but no luck. She just continued in her pattern of bad behavior.

So yesterday, was "D Day", Ms. Sarah returns. I wasn't sure if I should have gotten to school early to lay out the red carpet, hire a band and gets lots of balloons. We've been counting down this day since, February 10, and yes, you guessed it Marissa had a great day- NO HITTING. In case you missed it, NO HITTING. The first day is 7 weeks. A wonderful, glorious day! Today, was a repeat- NO HITTING. I pray that she will continue to be on this upside in her behavior.

Often times when I write this blog, its about the struggles and challenges of raising a special needs child. We still have those, but I love it when we just have moments of being normal. When she blends in with her peers or we are out in public and she acts like or better then every other child, its times like those I cherish. We don't have many of them but when we do, I want to celebrate, that is why I am sharing this with you. It takes a lot of energy for her to do so good and she has to suppress a lot of her sensory issues to maintain some sense of herself. Every day I become more amazed at her strength and resilience. She is still simply a miracle.

Happy 7th Birthday!

Today, we celebrate Marissa's 7th birthday. It is always a day of mixed emotion. Thankful that she is still with us and we are able to celebrate but yet a day of reflection of where we have been. This time 7 years ago, we began to find out slowly the medical issues that Marissa was facing and had no idea that one day she would be diagnosed with Autism. The next few days I relive those days of her being in the NICU. And as I look over this past year and the challenges she has faced, I can't help but call her my hero.

The other night I was telling Marissa's story to some new friends and they were amazed at how this little girl has so much going on inside. Every day she continues to fight all the odds and remain strong. While we are currently battling some behaviors at school, it is a testament to her strength and resilience.

We don't know what is in store for us this year. I hope that she will begin to manage her OCD a little bit better and stabilize her behaviors at school. I pray that she will remain physically healthy and that all her organs will continue to support her. I pray each day that God will continue to use her to influence others.

Thank you to all of our special friends and family that came to celebrate today. You help Steve and I each day by being apart of our lives. We are truly blessed that you have invested yourselves in Marissa. We hope that she had blessed you as well.

HAPPY BIRTHDAY, MARISSA!

Living with OCD

I have started this blog entry at least a dozen times, but it always seems as if I am whining so I delete it and close up my computer and move on. Most of you may know that I broke my foot two weeks ago. This change in Marissa's routine has pretty much made her come unglued. This is also Marissa's "growing season". (I call it that because she primary grows once a year and it is usually around her birthday). Growing season impacts her in every way from physically growing to emotionally growing. This year it looks as though her OCD (obsessive compulsive disorder) is getting worse and she is becoming less tolerable of outside influences. Lots of fun times.

So I thought, I would share some of Marissa's OCD with you and give you a little peak into our daily lives. Here are Marissa's top five obsessions:

1. When Marissa brushes her teeth at night, she has to wear a costume necklace. Her favorite is a yellow disco ball necklace. This is the only time that she will wear any type of jewelry.

2. Marissa is very particular about her clothes. Those that know her, know that her favorite color is yellow. For the past two weeks, she has wanted to wear something yellow everyday. Thank goodness, yellow is the color of the season. She also does not like jeans. She only wears jeans on Wednesday's because this is therapy day.

3. Each stuffed animal has its place. If its not in the right place, we have a slight melt down. She gets a new stuffed animal it has to take its place in the basket beside her bed and then can slowly work up to possible sleeping with her one day in the bed. Some animals have only gotten to the bed once and now have been banished back to the basket. (Kinda makes you think Toy Story is real- like what is going on in there).

4. Marissa's current obsession are the chuggers from Chuggington. Each chugger has a place. Currently, two are in the "training yard" and are not able to come in the bed. Yes, they sleep with her....in alphabetically order and they all have to look at her and be connected. On a rare occasion they have to be placed upside down, but still in alphabetical order.

5. Marissa is a game show junkie. She loves Family Feud, Wheel of Fortune, Lets Make and Deal and Deal or No Deal. While most children love cartoons, Marissa loves game shows. We have watched the same episode of Family Feud from 1979 at least a 100 times.

Well, I hope you at least got a little bit of a chuckle from this list. Some of her obsessions are so unreal that it is amazing Steve and I have not gone crazy. Living with OCD and Autism is like living in the movie "Fifty First Dates". We do the same thing every day at the same time. No changes, no modifications. This is the way we live our life and its what make Marissa a little more unique then she already is.

Is there a switch?

I guess you could say that today was a hard day of parenting. Frustrating and discouraging. I am beginning to think there is a switch in her brain that turns on and off sweet loving Marissa to a very defiant Marissa. I've tried to change the way I do things but I just can't seem to win for losing. It is such a mystery that there are times, when I fall to the ground in tears, just wish I could figure this all out.

I am one of those people that try to find solutions, look for solving problems that are out of the box. I am an encourager, a cheerleader for my friends that are going through their own trials. But, I can't figure out my daughter. One of my friends today, said "chin up, Amy". That came to me in the middle of the battle tonight.

As much as I am sad right now, I am listening to her as she is in her bed singing, "Silent Night" at the top of her lungs and it brings a smile to my face. I do try to live each day as though it was her last. I always go back in after she calms down and tell her how much I love her and she says she loves me too. And just like that the switch goes back to my sweet loving Marissa.

Gotta love Autism.

Love.... Parenthood

I'm not sure if any of you have ever watched it but there is show called "Parenthood" on NBC. In the show, there is a boy named Max, who has autism. In last night's episode, (that I just watched because there is no way I can stay up past 10), Max calls his mom a "b*****" and begins throwing things at her. She gives him a punishment that he doesn't take so kindly to. As his way of trying to make up, he makes his mom dinner. He "makes"mac-n-cheese, carrots and puts a lot of other things on the table to fill it up. It was a remarkable moment for me as I watched it and I shed a tear as I thought about the future with Marissa. (For those of you who don't know- Marissa only eats pancakes, eggs, hash browns, mac-n-cheese and pizza).

I have a very good friend that is going through a very tough time. As I was writing her today, I was listing off the things that Marissa doesn't have or do. Like, she doesn't have friends, doesn't play with Barbies, and will never be able to have children. I will never be a grandparent and I don't know what her future truly holds for her. I think she could be successful and I want her to be successful but I honestly don't know what she will be capable of. But, as I think about the things that she doesn't do, I often neglect the things she can do. So, as I think of the moment in Parenthood when Max "made" his mom dinner- it reminded me of the special things that Marissa does for me. The simple hug, or the "I love you mom", or even just her smile. They may not happen for days at a time, but when they do, my heart melts. Sometimes is is just the simple things that make life a little sweeter. I hope that as we begin 2012, that each of you will look at the simple things your children do for you. Don't take one minute of it for granted. There are some moms out there that long for the those experiences.

Happy New Year!

Survived the Holidays

Holidays are a little tricky when you have a child with special needs but especially with autism. Marissa gets over stimulated very easily and then begins to act out by hitting, screaming, throwing things and just over all whiney. While we had tried to make some changes in this years routine to make it more manageable for her, it still was not enough to help her. The break and lack of routine also don't help much with managing her behaviors. But school will be here soon enough and so we just enjoy this time that we get to spend with her.

Every once in a while I like to throw in a comment about what is great about having a child with autism. Marissa is a giver and not the best receiver of gifts. Christmas day at our house this year took almost 4 hours for her to open her gifts. (She only had 10). But its the enjoyment out of it, in everything there is a routine. "Read the bow (tag under the bow) whose it from", "all thank you mommy and daddy" (before she opens it), "thank you, I love it" (after she opens it). This year I switched from pattern paper to plain paper to see if that made a difference in how she opens a present. It seemed to help some as she was not ripping a pattern but I realized it was the thoughts and her thankfulness that she wanted everyone to know about. Also, she hates a mess. So after each present was opened the wrapping paper would have to be immediately put in the trash bag. No lingering paper on the floor here.

I hope that each of you had a wonderful Christmas holiday. This year I just took time to enjoy the day. Whether you have a child with special needs or not Christmas time can always be a challenge. I wish each of you the best in 2012. Thank you for taking the time to read my blog and allowing me to share this journey with you. Each of your comments help me realize that I am not doing this alone and that I do have people who care about Marissa, Steve and I. All I can say is that you are appreciated more then you know. Happy New Year!

Fun Times Are Here Again!

The one thing I know from my employment is that when a child experiences a trauma they will often regress back to the last milestone that they accomplished. Marissa has proven this theory to be true and has begun to hit and kick again. She honestly started it immediately after her surgery but four weeks later she is still hitting and kicking. I was hoping it would be for just a few days but she continues to do it. She doesn't hit or kick all the time but just at certain times, like changing her clothes. I don't know why. It doesn't make any sense. We have done the same thing every morning since school started but now we have a little power struggle to endure. Fun times are here again!

On another note, Marissa continues to make improvements since her surgery. We won't know if the surgery actually worked until December 22nd. They will do a Urodynamics test at that time. While I don't pray for any child to have pain, especially my own, I do pray that she will be able to feel the tubes and that we know this surgery was not all in vain. If this surgery did not work, then we know that at some point her kidneys are going to fail. But, I must stay upbeat and positive, Marissa is doing better then anyone in their wildest dreams could imagine.