Tuesday, December 8, 2009

What's your phone number?

Well, at school they are teaching Marissa her full name, my full name, address and phone number. Cute right? WRONG! On Saturday, she at least asked "what's your phone number?" 500 times- and I am not exaggerating. So now she has added "what's your address?" "what's your full name?". Her first question when I wake her up in the morning is "what's your phone number?". It goes down hill from there.

Cute, no. Funny, sometimes. Annoying, all the time.

Monday, November 30, 2009

Star Student Award

Today, Marissa came home with the "Star Student Award" for her character. She was chosen by the school for her respect, responsibility, trustworthiness, and citizenship. I am so proud of her! Much better then the best dressed award she got last year.

Thursday, November 12, 2009


Yesterday, Marissa had her first bad day at school. The teacher wrote in her book "defiant, needed redirection on numerous occasions". Although, when I dropped her off that morning I told the teacher that she was being "uncooperative". How did she go from being uncooperative to defiant?

So, what do I do? A typical "normal" child who had this in their book would get into trouble have some sort of consequence. A special needs child doesn't understand any form of punishment. She can not consistently be defiant and need redirection, can she? As a parent, shouldn't I do something. Hmm. I'll think about it.

Today, she had no problems. No redirection needed. No defiance. So, I'll just wait and see about doing something the next time.

Wednesday, November 4, 2009

"I can do so many things"

Each weekday begins with the same routine: 7:30am start waking her up by 7:45am she is out of her bed and ready to eat. She eats two pancakes and applesauce with her medication. The pancakes have to be on a certain plate with her sippy cup on the headlight of rocket (her place mat). She continues to ask "how many pieces?" "are you done mommy?". Over and over again. We finish eating, she asks "whats on TV?" I tell her "Shaun the Sheep" she yells. We sing, and get dressed. I leave to put our stuff in the truck and warm it up for when she gets in. She yells. She has two chores in the morning: turn off the TV and the lights. She yells as we attempt to accomplish both of them.

On the 20 minute ride to school, she will continue over, over and over again say "mommy" but wants nothing. We get to school, after counting school buses, surprisingly each morning we always see three. I take her in, we go to the office, I get my sticker and we began our long walk back to her classroom. Today, we fell three times, as she was waving to everyone in the hall. Most of them know who she is- which is funny being she is not that social in any case maybe she will be a future politician. She stops at each place that the class stops, points out all of the boys bathrooms and finally we are on the home stretch. We get in to the classroom, off with her coat and she waves "bye mom" as all of the kids scream her name. Off I go to work.

When I get home, it is immediately, "what to wear tomorrow?" "play a game" "I ungry" "what's your favorite color mommy?" "daddy working?" "whose on the phone?" "when Fortune come on?" and over again it goes. Rest comes at 7:30pm, we walk to my bedroom where we begin the nighttime routine. We have to change her diaper, put on pajamas, all while she is squirming around. Just when you think to yourself "really this is it" she proudly announces "I can do so many things". This is where I smile and realize that she can do so many things.

Each day begins and ends the same way. Its what's in the middle that counts. In the morning, I am rushed and she is rushed because of that. At night, is when I see all that she is learned throughout the day. While not all days are perfect or even joyful as a parent- she can do so many things. Things I never thought in a million years that I would see her do. So I smile. Because all that I do is to help her do so many things.

Thursday, October 29, 2009

Candy Walk Day

If you have a special needs child then you know going trick-n-treating is not really an option. You have to become creative with the costume, because they are not going to wear the store bought ones, and in and out of the car, or carrying them sometimes just isn't possible.

So today at school, they had a candy walk for all of the special ed pre-k and kindergarten classes. The children were dressed in Thomas the Train, skeleton, fire man, and one little boy dressed like a bunny. He looked like the kid from the "Christmas Story" and you could tell he hated every minute of it!

So let me set this up for you....

There were about 30 special needs children, about 20 parents/grandparents, and a hour of solid walking slumped! Fun, fun, fun. Some how I got my own child who at minute 30 began, "no more candy, no more candy" and a boy in her class that has some ticks and occasionally screams. The child in front of us, was grabbing the eraser to erase the blackboards and my child was taking off the papers of the children's desks. It was hot and a tad bit crazy. As the parents were moving the children in and out of the classrooms, I noticed that we all had a look in our eyes that said "I am doing this because....".

I volunteered to stay with her during her candy walk so that I could experience trick-n-treating with my daughter. Experiences that I think a lot of parents take for granted. It was worth seeing all the children dressed in their costumes and proudly getting their candy from the kids. I am doing this because even though she drove me crazy, I love her with everything that is in me and couldn't imagine her doing this without me.

Monday, October 26, 2009

The Joy of a Crayon

As "normal" people, we have all held a crayon and colored. Marissa has not. I think that I have probably spent about $50 in various writing utensils, including every make of crayon known to mankind. She has always disapproved of holding or coloring with any writing utensil. So imagine, my dismay when tonight in her school folder I found that she has homework! Four homework pages that all have to deal with coloring, cutting, and gluing.

I reminded her that we have homework. She seemed excited. I sat her in her high chair, moved her up to the table, and took out what I believed to be the best of the 100s of crayons we own. We read the directions, she picked up the crayon and she colored! She colored! We did 3 out of her 4 pages. We colored, cut and glued! It was practically painless (although a bottle of wine was chilling in fridge)!

Success. Marissa loves school, now she loves homework. We are making some progress and are moving in a positive direction. It is simply amazing- the joy a crayon can bring to a child and a mother. Hmm, I wonder what we will do tomorrow?

Sunday, October 25, 2009

Repeative by Nature ?????

So today was one of those days where Marissa repeated everything. The same question, over, over, over, over, and over again. At times, it grates on my nerves, and today was that day. She's in bed now, so that day is over.

I did discover yesterday the joy of having a special needs child. We drove an hour away to see Dora at a furniture store. When we got there, the line was wrapped all around the store with a two hour wait. We were not waiting. She saw the store and said "Dora!", I made a split second decision and told her that "Dora had to leave there was a problem with Boots", she never cried, no yelling or screaming. We went to the mall instead. When we got back home, she happily told her daddy "I saw Dora!". She watched the DVD of Dora all the way there and all the way home, in her world she did see Dora. Am I a bad mom for this?

I should clarify, the joy wasn't lying to my daughter, but she didn't know if she was there or not. I think deep down she loved shopping more then standing in line for hours for someone she might of been scared of- just like Santa Clause.

Thursday, October 22, 2009

The Best Day Ever

For the first time ever Marissa spoke to me spontaneously. She very rarely says anything without it having a question first, but today she did. She looked at me and said "I love you mommy, your a great mom". I started to cry and of course she just looked at me and went back to watching her show. I was on cloud nine- all day. As bad as the rest of my day went, it wasn't bad at all because for the first time in four and half years my daughter told me that she loved me and I was great!

Monday, October 19, 2009

First Day of School

Today, was Marissa's first day of school. I survived.... she loved it. Of course, I am so tired. She had to get up at 7:30am, two hours ahead of when she usually gets up. She took a two hour nap, so we will see how my evening goes. She went to the "potty" (not really), played in shaving cream, and traced her name. Wow! Big accomplishments for the first day.... I wonder what tomorrow will bring.

Friday, October 16, 2009

School Visit

Today, I took my little girl to "big" school, where she will start on Monday. I am nervous as can be. Her teacher is very nice and everyone is very excited to have a girl. Marissa is the only girl in her class, and the first on the teacher has had in three years.

She was excited! She moved all around the room, playing with the different toys, counting things but saying "no" to most things. I think it will be good for her, because she will be with other children like her. All boys. This year ought to be fun!

I am nervous. (Oh, I said that already). When we left the school, I asked her what she wanted for dinner, of course, she wanted McDonalds.

I'll let you know how Monday goes.....

Tuesday, October 13, 2009

Not such a good day...at UVA

Okay. So today not a good day. I have discovered that in some of the numerous doctor's appointments, that hearing the information never gets any better. You can know it as a mom and as a professional (I am a Social Worker) but "knowing it" and "hearing it" sometimes are just too much.

Today, we got the official word that Marissa has autism and also mild cerebral palsy. She also has some OCD (obsessive compulsive disorder). The doctor was very kind and explained everything to where it was very understandable and made sense.

So, here we are. Starting a new phase, new challenges, knowing that nothing has changed but now we have a label. Even though we live with it everyday, the label some how makes the facts of our life come a little bit more a reality.

So now we get to add three more diagnosis to a litany of other diagnosis. We added three other people into our lives and we now begin a new journey, down a different road, with an unknown outcome.

Hey, but a least I have the memory of our normal day at the beach while we were on vacation, right?

Thursday, October 8, 2009


Okay. So today is one of those days where you think to yourself, "there is nothing wrong with her- she is normal". In the past, her foot hits the sand and we head back to the house. But, not today. She rolled in the sand, tried to bury herself in the sand, and then did the most crazy thing- she laid in the sand.

This is one of those days where you are so happy to see sand all over your child- you don't know what to do with yourself. Like is it worth renting a plane with a big banner saying "Marissa played in the sand". Is this a miracle? Are we making advances? Is she.... well.... normal?

Today, was a day I wish I had more often. The type of day you dream about as a parent with a child of special needs- a normal day at the beach.

Sunday, October 4, 2009


Okay. So our first day at the beach went fine. Not grumpy, no whining, no fussing. Today, another story. After playing with sugar packets (adding, subtracting, counting, differen colors) for breakfast, we finally got to eat. Tonight, she kept asking everyone what we were drinking, around the table over and over again. Now, she is walking around, demanding that everyone do what she wants. The joy of vacation.

Monday, September 28, 2009


We all went to UVA today for a follow-up for Marissa's heart. LLLLOOOONNNNGGGG day! More tests, but surprisingly she did well. Usually we leave these appointments with major headaches...not today. No good news but no bad news either.

However, at a "teaching" hospital you have one doctor, then another, before the actual doctor comes in. By then you have said all you wanted to say and you just sit in the chair saying "no problems, when do we come back, okay".

You always end the day...tired.

Tuesday, September 22, 2009

Funny Things

Do you ever wonder what children think? She comes up with some funny stuff. Today, she was talking to herself outloud asking questions. An example, "Where are the Mr. Remotes?" She then moves to the other side of me "Oh, there they are". I move them, like she insists, and then she moves around me and says "Oh, there they are again". Never really talking to me, but to herself. Funny.

Ok, so maybe not to all of you. But, remember she is not like every other child out there. Her "sense of humor" is also different- which makes mine- different.

Monday, September 21, 2009

Glimpse of the Past

In short, we had no idea that Marissa was going to have any problems- we expected a healthy, bouncy baby girl. But, instead we were blessed with a little girl who has Chromosome #2 Duplication. Believe it or not, she is it. No one else in the entire world. Just her. With this disorder, she has developmental delays and several health impairments. We have been back and forth to UVA on a monthly basis. We thought we almost lost her at 3 months old, but she has proven to be stronger and stubborn more then anyone can imagine.

After 3 1/2 years of trying to have a child- God gave me the blessing that I was wishing. I wanted a girl- with no brown eyes. That is exactly what I got! So, I can't ask why this happened to me, right?

Raising a child with nothing to compare her too is very hard and frustrating. There is absolutely no information or connection with parents of a child who is unlike any other. Which is why I decided to do this blog. Share my frustrations and my joy with all who choose to read it.

If you are reading this, welcome to my world.

Oh, and P.S.
In my life, I don't have many good days. I guess it is all how you judge it. Tonight, no temper tantrums, no head banging, no throwing hands on the wall.... a good day.

Friday, September 18, 2009

Why am I doing this?

I decided to write this blog for a couple of reasons. The first is to "vent" to the world about all of my ups and downs being a mom of a special needs child and secondly hoping that someone may read this and not feel so alone. Unlike other children, I have nothing to compare to her to and I have no information that would be helpful to predict her future. All I have is the understanding that she is "teaching us". Sometimes this is just not enough.