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 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.