I am learning.....at a snails pace.

I am learning and unfortunately had a snails pace, that I am not going to be able to conquer or even overcome all of the obstacles that Marissa has to face.

I am learning that her hitting, while sometimes she has control, most of the time she does not.

I am learning that not all that she does is personally towards me, it just so happens I am the one standing there when she feels the urge to hit. I am learning that she has such a sweet side and a great personality, although, she hides it deep inside.

I am learning that alot of people put emphasis on things that just are not that important. I understand now that each hug, each kiss, and each "I love you", is not to be taken for granted. I have learned to cherish these wonderful things she does, especially when she does them spontaneously.

I am learning that each day I have with her maybe my last. I am understanding that this is the way for anyone, but even more true for my beautiful Marissa. I pray each day, this rare chromosome disorder does not end up taking her life.

I am learning that Marissa is stronger then I am. She is braver then anyone I know. I am amazed by her resilience and her fight.

I am learning that Marissa is my hero.

Your Not Being Nice

The hitting venture still continues. Each morning, somewhere along our morning routine, I get hit. Sometimes, it is just a tap and sometimes it is an all out explosion of hitting. Yesterday, Marissa took both hands and hit me on both sides of my cheek. Today, it was just a small tap on my waist. Each morning, I get hit. I have tried many tactics, tricks, games and bribes. But, to no avail. So, I am going to try and take another spin on this hitting thing- "your not being nice".

I have decided that if she is not nice to me, by hitting me, then I won't be nice to her and take away some of her many things. Okay, so your thinking, "you haven't taken away stuff before?". Aahhh, but I have. Only to give them back a day or two later with no improvement. So this time, I'm going to add another level of my disappointment with her actions. I know, I know, this is not going to work either.......

So, Mother's Day is next Sunday. She loves to give gifts. So, now I am suggesting that she give me the "gift of no hitting". My husband likes this idea because then he doesn't have to go and buy anything (although, I am saving this one up for a new car). The count down is on.... 7 more days until "Mother's Day" when hitting will cease in this house. (Got my fingers crossed).

Autism Awareness Month

As I sit here, the reality of Marissa's autism is very real. She is also sick currently which always compounds the situation even more. We have lived with this diagnosis for the past two years. However, we are gratefully that with her chromosome disorder we were able to have early intervention services in place when she was six months old. This has been such a struggle for us and especially for me. I had to grieve the child that I did not have and come to gripes with the child I have. Some days are easier then others, but we take one day at a time. There are lots of things Marissa is unable to do. Like now for an example, she is sick but she doesn't have the ability to identify what feels funny to be able to tell you, "my stomach hurts" or "my head hurts". Instead we have to play the wonderful guessing game. When she is sick she is what I call "hyper sensitive". Like now, she is standing beside me saying "something is wrong with my socks, mom can look at my socks". I look, nothing is wrong. Two minutes later, she says "mommy, I got something in my mouth". I look, nothing is wrong. Then she says, "mom, can you look a my finger". Over and over we do this. Move from her socks to her mouth to her finger without really knowing what is truly wrong. One would think it would be hand, foot and mouth disease, but its not. It would never be that easy. She can't tell me how her day went at school and she really doesn't have "friends" in the sense that other kids have friends. She makes funny noises and has major meltdowns. I often feel that I live the movie "50 First Dates" because nothing in my day is different when it comes to her. Recently, as I have listened to my friends talk about their children I have complied a list of things I am grateful for having a special needs child, who also has Obsessive Compulsive Disorder. So, here is my top ten list: 10. Marissa is not interested in the latest and greatest toys. So, I don't have to worry about tracking things down or stalking the Internet to make sure that perfect gift is under the tree at Christmas. 9. Marissa loves computers and electronic stuff. So if I can't figure out how something works, give it to her and in a few minutes she has it all figured out. 8. Marissa loves clothes. She has to make sure that everything matches. No dressing herself and wearing crazy outfits to school. 7. Marissa loves order and structure. Everything has it time and place. 6. Marissa loves music and songs. I have learned to stretch my creativity by making up songs to going to the bathroom to brushing teeth. 5. Marissa is the ultimate picky eater. So I buy yogurt, pound cake, mac and cheese, pancakes and waffles and we are covered. 4. Marissa's room is always very clean. Everything has its place and she hates it to be messy. 3. Marissa loves different languages. French, Spanish, and Chinese. We are covered. 2. Marissa has a memory like you would not believe. So I can tell you who got in trouble at school, what they did, and what she learned that day. Not by her telling me, but at night when I put her to bed, she presses "play" on her brain and I know. This really scares the teachers. (Yes!) 1. Marissa is so unique and I thank God every day that he gave her to me.

Hitting Dilemma

I am beginning to wonder why God has chosen me for this journey of raising Marissa. In the recent weeks Marissa's hitting had subsided. We almost went four weeks with no hitting. I thought that we had been successful in moderating this problem. Now, she turns 6 and it is back with a vengeance. I am tired and I am worn out. I feel like a punching bag. Do you know how it feels to be hit in the face by your own child? It is the worst feeling in the world. I can physically feel my stomach drop, my head throb and my heart cry. I can handle most things, but this is beginning to be impossible. I've tried everything from taking things away to the easy button at Staples, nothing is working.

So as I sit here, I am crying. It has been a long time since I've cried. I went in her room after I escorted her to bed, hoping that physically seeing that I was visibly upset she would understand, she just looked at me and told me to shut the door. Then I noticed her bed, she has put her elephant, cow, Mack and bear in her bed and line them up like her dad and I always do. The funny thing about that is her room was dark and she has a basket full of animals. I am not sure how she accomplished that, but she did.

I pray that God will give me the strength to help her overcome this hitting dilemma. I pray that this will be something I look back on and think "wow, that was a trial". As with everything, this to shall pass. Oh, I hope it passes soon. Because a girl that can get four stuffed animals out of basket of forty and line them up perfectly in her bed, in the dark, can certainly learn not to hit.

"Mommy, I just hit you!"

One of the challenges of raising a special needs child is the delays in which they decide to do typical child behavior, with a twist. Marissa is about two years behind. Not all behavior is delayed, just the "best" ones. Like hitting.

The thing about hitting is that it should or could be controlled, but not when you have a Rissa. We have tried just about everything including bribery, but still the hitting continues. The positive in this is that she doesn't hit other children. Some days her hitting is so bad that when she goes to hug me I have put up my arm to block the hit. Only for her to wrap her arms around me and say "I love you mommy". Its an interesting world in which I live. One in which the hardest moments often become the sweetest.

My most recent decision to try and stop the hitting is to ignore her when she does it. So she will hit and hit. Then she looks at me with that precious big eyed look and says, "Mommy, I am hitting you". Like, "hello, lady- I'm hitting you what are you doing!". This seems to get her for a period of time but then the saga still continues and I am still getting hit.

As in everything else, I hold true to know that "this to shall pass".

First Day of Kindergarten

On Friday, Marissa had her first day of Kindergarten. One by one each child came in with their parents in tow. The smell of new back packs, glue, crayons and paper filled the air. There we stood, Marissa and I, with great hesitancy. Almost looking at one another thinking, "Do we have to do this?".

Marissa has an attendant with her. The teacher wanted all the children to sit in their seats. The room got quiet and Marissa threw her first fit of the day. It was so bad, I had tears in my eyes but knew that I could not intervene. Today, was going to set the course between her and her aide. I wanted to say to all the parents who were looking at her with such disdain "she has autism people!". But, I didn't. I stood their trying to be proud like the others but inside I was crying, wanting to take her and run. I couldn't, I knew that, but still I had the thought.

That night, she came to me and said, "I was mad today". I said "you were". "Yes". "Why?", "They made me sit, I don't like to sit", "your a big girl now, you have to sit", she was quiet, then she says "I don't want to be a big girl". I laughed. Because, I don't want her to be a big girl either.

So we are now on day three, and she is doing better. She doesn't like it, but she is better then she was. And tomorrow will be another day.

Being Kind

Due to Marissa's new attitude in life, noncompliancy (if that is a word), I decided that each night before she goes to bed we would do a little devotional about being kind to others and kind to herself. I am not sure that she really gets it, but it makes me feel better to know that at least I am giving her some type of a lesson. She must be getting it confused though, like last night, I had to put her in time out and she hollers, "Am I being kind?" it becomes quiet and then I hear her say "Yes, I am". I didn't say anything, I just kept my back to her and smiled. What I wanted to say was, "your being kind because your in time out".

I have learned some lessons about being kind, since Marissa came into my life. I have learned to have more tolerance for a child who screams in public or has a "tantrum" it just might be that the child has autism. I am more compassionate to a caregiver who is with a child in a wheel chair. I have and understanding that those around me just might be struggling and just a smile is all I need to do to be, well, kind.