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.

Saying Lots of New Things

For any of you that have actually met Marissa you know that her vocabulary is small (what she's willing to share anyway), she hardly never speaks spontaneously, and sometimes it is hard to understand her. That is until recently. I have now realized that every word I speak goes into her brain and she saves it to use at the most convenient time for her.

An example of this is when she was refusing to listen to me when asking her to clean up her books. I ask her why will she not help, and she says "I'm old". Really? This is the best you got. Or as I am trying to get dressed after putting on several outfits, finally found one that I thinks is okay and she replies "your going to wear that!". Then she proceeds to say "nooooo mommy". I think this is more of her obsessive trait then actually my outfit. Oh, well.

In any case, she is finally using "her words" or maybe they are just mine- on replay.

"Biggest" Episode Ever!!

Parenting a special needs child is like the weather. One minute the sky is clear blue and the next it is a severe thunderstorm. No warning no "beep, beep" from the TV. Its just here. Tonight, this is what happened.

I try to ignore, she comes in the living room, says "mommy" and then proceeds to bang her head on the wall. She cries. I give no response. She moves over the chair, climbs in and says "mommy" and then proceeds to knock off the pictures off the end table. We move into her bedroom, as I say its time to go to bed. She then hollers, "Dora pajamas", I get them out, she then begins to hit her legs and head, because there not the right Dora pajamas. Do I need to say more? It lasted for over 15 minutes. I was defeated. I came out to the kitchen and stared out the window, this is it, the storm has passed. Now the sky's are just cloudy and I am feeling a little blue.

A New Day

Everytime we have to go to UVA, I always think to myself today is a new day. We are going to learn something new about Marissa, have our reality check, and then they send us on our way. Bad news and all. As we are making the return trip home (1 hour 15min) we sit quietly as we try to absorb all the information we just received.

This last trip to UVA was eventful as always. We had to go see a Dentist for the first time and then to the Developmental Pediatrician. We were 1 for 1. Good news at the Dentist, although she did not cooperate at all. Bad news at the Developmental appointment. At 5 years old, we made the decision to put Marissa on a low dose of medication to help with her behaviors. We struggled to make this decision. As we sat acrossed the room looking at one another, watching Marissa with her fixation on the chairs, we only had one answer to try it. This was the worst day. I wanted to cry. I just feel like I could do something different, other behavioral modifications to help her. At the end, he said "You have done all you can do". Really? I have honestly done it all?

So it is a new day. A new day that I never wanted to venture to. A new day where I wanted to change the clock back to when she was 1 and life was easier. Just another day.....

The Biggest Temper Tantrum Ever

Lets start from the beginning. Marissa and I had such a good night. We ate dinner together, she was doing new things and then it came the big one. The one you read about it, but the one you hope will never come. And then at the moment when you least expect it- Wow- its there full force.

So you wonder what was it over, changing her diaper. There was kicking, screaming, head banging, slapping of the legs and hitting. It took me 15 minutes to get her in a position to be able to put her pjs on for bed. I then had to put her straight to be. For both of us. She finally calmed down.

I took her favorite things away, gave her a sad face on her award board, and told her good night. I love that little thing but she can push you to your limit. After about 5 minutes, I went in told her goodnight and tried to process what had occurred. Five minutes after that, she was fast asleep.

Waiting....waiting.... and more waiting......

Well, here we go again. March has always been one of our hardest months. Its a combination of her getting one year older and the change of winter to spring. She always gets sick in March and sometimes I find myself holding my breath that we make it through the month without a hospitalization.

So here we go again. She now has "pre-pneumonia". We had to take her on Friday to get x-rays of her chest so that they could be sent to UVA. But, no one has called us back. Yesterday, my nerves were such a mess I couldn't even eat. Today, I decided that since she is acting better, then we mind as well make the most of it ande headed to the mall. Now, she is in her crib coughing. Ugh, I guess I screwed this one up.

Hopefully, on Monday someone will call us back and let us know how her lungs are. I am still trying to figure out the mystery of why the hospital closes but the sickness doesn't....hmmm.

Is this what 5 is going to be like????

Okay, so on Saturday we had Marissa's birthday party and so she is "officially" 5. Oh, boy is 5 here with a vengeance. Today, is the first day that she got 3 sad faces at school with the word "defiant" written in her book. I had to go and get her from school and she cried all the way home and for an hour at home. She was whiny, bossy and grouchy. Ugh. Frustration is setting in and the great fear of the unknown- is this what 5 is going to be like?

Turning 5!

Last Thursday, Marissa turned 5. Tomorrow is her big party day. This week, I have noticed that she has started to do more age appropriate things, but yet it is also a reminder that she is not able to do what other 5 year old do. Her birthday is always a celebration. We mark this day by thanking God that He has chosen to give us another year with her. Her life expectancy, like any of us, is a concern. But, they didn't think she'd make it 1 an here we are 4 years later, celebrating.

As I write this, she has curled up next to me on the couch, watching "Dora". In this moment, my heart wells up with all the love I have for her. While she can be quite testy and defiant (or independent- however you want to look at it), most of the time. She can also be funny, loving and gentle.

Happy Birthday, Marissa! Mommy loves you- more then the sun and the moon and the stars in the sky!

A Very Long Time...

Okay, so it has been a very long time since I have written. The holidays, work and lets not forget the winter/spring sickness that avails us each year. As Marissa is getting to turn 5, she has "coughed" for the first time. However, her developmental delay, leaves her more frustrated then ever! She has been out of school and driving pretty much everyone crazy. But, she is bouncing back and has begun to eat.

We have learned more about her this past year then we have in the years past. Her birthday reminds us to be thankful that we have had another year with her and that she continues to defeat the odds. The government is trying to take away her services and no doubt that this year will be us more challenges in trying to get her everyday needs met.

I have also decided that this year we are going to have a real party- to celebrate this great milestone. She loves Romp-n-Roll, a local children's gym, and so we are inviting all 10 autistic boys in her class as well as a few other friends. She is excited about having it there. She loves Rompy! I have decided that I did not like 50 people crammed into my house. So it is a win-win situation.

I will also try to be more diligent in writing my blog. Remember I said "try".....