My Big Speech!

A few weeks ago I was the guest speaker at A's preschool's annual auction/fundraiser. This fundraiser brings in thousands of dollars for their amazing inclusion program. Every year they have one parent, who has a child with needs, come and talk about their child and how the school has affected them. I was honored to be the speaker this year. There were over 700 people there, and I was nervous. But I think I got my point across...I was able to talk A's amazing journey, as well as tell people what a fantastic thing inclusion is.

Below is my speech. For purposes of anonymity (since my blog is anonymous) I changed some names. But the speech is the same.

My daughter A is now 4 1/2. She has been at ABC since being in Funtastics at age two. When I came to my first auction/fundraiser a few years ago, I knew that one day I, too, would be up here talking. Not because I like public speaking, but because A’s story is worth telling. And I am thrilled to have the opportunity to be able to share with all of you how fabulous I think this preschool is. I want to tell you about A’s journey first, and then tell you how being at ABC has affected her.

I should backtrack by telling you that A has an older brother, D, who is two years older than her. D is a very healthy, typically developing boy. I had no reason to believe that my new baby would be any different. It was a healthy pregnancy, with a healthy ultrasound. A was born by planned c-section at 38 weeks. I went into the surgery thinking that I would give birth to my daughter, spend a few days in the hospital, and be home in a few days.

I’ve heard it said that the moment you find out you have a child with special needs changes your life forever. From that moment on, as with any life-changing event, everything can be categorized as happening before or after finding out. Some people find out their child has challenges while still in-utero, from an ultrasound or amnio. Some people find out as soon as their child is born with an obvious birth defect. Some people don’t find out until a few years later, like when a diagnosis of autism arrives. Still others find out they have a child with special needs much later in life, like if their child is injured in an accident.

I knew something wasn’t right from the moment A was born. The first indication that something wasn't right was that A was born with a cleft lip. This was shocking to me, as we had had an ultrasound and this did not show up. However, she had been in profile during the ultrasound, so I can see why it didn't show. I was in shock, and was devastated. How could my baby girl have a birth defect? I thought it was the worst thing that could have happened. However, I fell in love immediately, and was fiercely protective. This is our first picture together, and you can see the fear in my eyes. I had no idea what was in store for us.

I shortly found out that having a cleft lip is far from the worst thing that can happen. Within 2 days of her birth, A had lost almost a pound, despite the fact that I was desperately trying to nurse her. She was taken to the NICU (neonatal intensive care unit) at the hospital and then transferred to the NICU at Children's Hospital, where she remained for the next 12 weeks. It turned out that she had a vascular ring, which was a blood vessel coming from her heart and was wrapped around her trachea and esophagus. This was affecting her breathing and ability to eat, which led to her severe weight loss. At 10 days old, A had heart surgery to cut that blood vessel...but where the ring was around her trachea was still very floppy; it wasn't rigid like the rest of the cartilage. This led to severe breathing difficulty, as her airway kept collapsing on itself. During the 12 weeks she was hospitalized, we found out about many more birth defects, including but not limited to: a paralyzed vocal chord, severe vision impairment, she was deaf in one ear and hard-of-hearing in the other, and had no semi-circular canals, which are the parts of the inner ear which control balance. We had to insert a feeding tube into her tummy, because with the breathing difficulty she never did get the hang of eating, breathing and swallowing at the same time. Eventually she also got a breathing tube, or tracheostomy, because her breathing issue was so severe. I seriously did not know what her future would hold.

After we discharged from the NICU, we were hooked up with an early intervention program. We had a fabulous teacher, S, who would come to our house once a week to work with A, teaching her developmental tasks. When A was about 2, S asked us if we were interested in the Funtastics Program at ABC. She told us it was a program for 2 year olds, that even though I would have to remain on campus because of her tracheostomy, it was a drop-off program, and that it would be great for A. I jumped at the chance, since for the previous 2 years all of A's outings consisted of doctor's appointments, therapy sessions, and shuttling my son D to his activities. She was in class with B, and L and with early intervention teachers M and M. It was amazing to see her in a school environment, doing art projects and playing on the playground.

Soon it was time to decide where to put A for preschool. I had 3 choices. Choice #1 was ABC of course. Choice #2 was the special needs preschool run through the local school district; and Choice #3 was the preschool where my son had attended. I really didn't want the special needs preschool; cognitively A was right where she should be, and I didn't think it would be an appropriate placement. I just knew that A would rise to meet any challenge, and felt that a special needs preschool wouldn’t provide the kind of challenge I was looking for. I’d always dreamed that she would attend the preschool where my son went, which was through our synagogue. It was a great school, offering a good curriculum and a Jewish education, which was important to me, being Jewish. But when I talked to the preschool director, she was very wary. She was concerned about having A there. She wasn't walking yet, only crawling, and the director was concerned that she would get run over on the playground. She voiced concern about this, and concern about that. I knew about the inclusion program here at ABC, and the director told me that they wanted A. They WANTED her! It was music to my ears. But what really put me over the edge in my decision making process was something that one of her early intervention teachers told me. She said that the child doesn’t need to be ready for the school; the school needs to be ready for the child. My synagogue was in no way able to cope with a child who wasn't walking and had a speech delay, but ABC was. My decision was made.

A was in the 3 year old class last year with H, D and M. And this year she is in the 4 year old class with J, S and N. I wanted to make sure to mention each teacher by name, because each has had a huge impact on A’s life.

To update you, A started walking this past January, at the age of 3 ½. This summer she got both her feeding tube and breathing tube removed. Her speech has blossomed. She is learning to go down a slide without falling over. She is starting to write letters of the alphabet. She is a social butterfly. All in all, the grim future I envisioned for my daughter has not come to pass. She has exceeded all my (and the doctor’s) expectations. She is a true miracle child.

So that brings me to the question of what does being in an inclusion program mean for my daughter? For one thing, it's been great socialization. The kids just love her. When we walk in in the morning, the other kids often shout “A's here!”. They love to play with her, and she loves to play with them. You have to understand that before A started school she rarely played with kids her age, partly because we'd been so busy with therapy and doctor's appointments but also because of the typical “second child syndrome” where the first kid gets more!

Secondly, she gets the role modeling of typically developing kids. Her speech has vastly improved since being in the school. She has been asking to go potty (even though she isn't potty trained yet) because she sees her peers going potty. Just last week S showed me some letters she wrote after watching her peers practicing writing their letters. Without typically developing kids to model, I am convinced that some of these gross motor, fine motor, speech, and self-help skills would have been slower to develop. She drinks out of a sippy cup normally, but now drinks out of an open cup after watching her classmates do so at snack time. My child, who never ate and was on a feeding tube for a few years, is now in a lunch program at school.

Third, because it is an inclusion program, and there are kids here of all sorts of abilities, the kids don't look at A as being different. Yes, in previous years she had a breathing tube in her throat, crawled instead of walked, and was virtually unintelligible. Even now she will always have hearing aids and glasses. But I don't think the other kids even notice that. There are kids here in wheelchairs, with glasses, with Down Syndrome and autism. What a great lesson for kids of all kinds, that we should look beyond what people look like. I would like to think that all kids who come through this school are raised to be more tolerant, and grow up to be more tolerant and accepting adults.

Fourth, not only do I feel a huge level of acceptance for A, but I feel a level of acceptance. The other moms here, not just in her class but in the school, don’t shoot me looks of pity like I get at other places. The moms here get it; either they themselves have kids who have needs, or they don’t have children with special needs but know that this is such an accepting environment.

Finally, last but not least, being here in the inclusion program gives me a sense of normalcy. Yes, A has hearing aids, 8 hours of therapy a week and a list of doctors a mile long. At least she no longer has a breathing tube and feeding tube! But now, thanks to ABC she also has birthday parties, playdates, field trips, artwork on the fridge, paint splattered clothes, stories to tell and songs to sing. It’s all I ever wanted for her; to do what other kids her age are doing.

I cannot speak highly enough about the staff here at ABC. They all seem to honestly care about A. But it’s not just A---it’s every child here, whether or not they have special needs of some sort. Typically-developing or not, the teachers embrace each child who walks through these doors. From my observation over the past 2 ½ years, they don’t give any child special treatment. They encourage each child to be the best he or should could be. I’ve seen that first hand with A. I am convinced that she wouldn’t be flourishing the way she is today if she weren’t here. It’s been such a blessing, and I’m thrilled that I got the opportunity to share with you all tonight.