Helicopters And News Trucks

She came home from school, went in her room, curled up on her bed and said she was scared. When I asked why she said she didn’t know. Once again anxiety had taken hold of my daughter and I didn’t know why.

It wasn’t until dinner time that I was able to figure it out. She mentioned that there were helicopters flying above her school and news trucks parked outside. She didn’t know why they were there and was frightened as she saw them coming out of school. To her it was scary. My daughter that thrives on predictability was thrown off guard. What she normally sees looking through the window in the van that takes her home was different. Things were different as she left school that day.

Unfortunately in this day and age when we see helicopters hovering above a high school and news trucks parked out front we automatically think tragedy. Unfortunately as much as we try and shield our daughter from hearing about and seeing “bad things” she is aware of them. How very sad it is that she came home from school that day scared. How very sad it is that our children now instinctively have acts of violence ingrained in them. I wonder if my daughter was the only one frightened that day or if there were others.

As I explained to her that the helicopters and news trucks were there to cover a story about a sports team at her school she became less afraid. There were no bad guys shooting up her school and she didn’t need to be afraid.

This story of our high school soccer team has sparked a united front from our community. The team was about to be disqualified from playing a championship game because of clerical errors made by adults. Our community however, stood together and protected our children from the harsh realities of this world. Our children learned, at least this time, that if you stand up for what us right and fight really hard, sometimes you can win.

Why then is it so hard to win against the risk of violence that our children are faced with in today’s world? Why should our children be coming home from school, going into their rooms, curling up in their beds and saying they are scared? It’s time that we as a community stand together to make sure our children are protected from the wrongs of this world. How that is accomplished I don’t know. Perhaps as a community we can stand together and figure it out. Perhaps next time my daughter won’t come home curl up in her bed and say she is afraid.

Abby

Our journey has introduced us to many other families traveling on their own journey. Abby and her family are one of those families. Somewhere along the way Abby and my daughter’s paths crossed and a friendship was made between her mother and myself.

Our daughter’s paths are different but their journey’s are similar. Abby attends the May Institute, a private special education school. My daughter attends a public school. Both of our girls are in programs that suit their needs and have made great progress since their paths crossed so long ago.

I had the honor of attending the May Institute Gala where Abby’s mother, Jolie, was the guest parent speaker. Jolie shared her family’s story of their autism journey. A journey she said, ” like everyone else’s filled with joy, headaches, crying, laughter, growth and amazement .”

Abby’s path steered her to the May Institute where she was able to make substantial progress. Jolie refers to her daughter’s school as a hone away from hone. She calls the staff a part of their family. A family that makes decisions together.

Abby found her success at the May. My daughter found her success in public school. Two girls with ASD on different paths but each achieved success because they were in the right program. Two girls that call their school a home away from home. Two mothers that consider the staff at their daughter’s school family.

Oftentimes families on this journey are faced with the hard task of finding the right program for their child. My daughter was able to progress in public school but I know so many other families whose child couldn’t. Our public schools are very unequipped to meet the needs of all of our children. To those families like Abby’s that have had to go through the pain, sleepless nights and pay the attorney fees to get their child into the right school I applaud you.

When our children are in the right program wether it be a private or public school amazing things happen. They learn to become more independent and with independence comes happiness. Every child with autism is different, every child with a disability is different, every typical developing child is different and each deserves a chance to succeed. Each and every child deserves “a life well lived a life well loved.”

Abby and my daughter have been fortunate to each find the place where they belong. They have taken two different paths yet their journey is similar. A journey of joy, headaches, crying, laughter, growth and amazement.

Click on the link below to hear Abby’s story.

https://www.mayinstitute.org/news/inside-may.html?id=2963

Choose Happy

My daughter likes to hang a 12 month calendar in her room. Every year it is a different theme. One year it was dogs, another year it was Anna and Elsa from Frozen, this year it’s unicorns. She loves to flip it over every month and see what the new picture is. This month, for November, it is a unicorn with the words Choose Happy.

I often mention happiness when I talk about this journey. It’s ironic that her calendar should say choose happiness this month. For it was in the month of November that the person who made me understand happiness passed away.

Strangely enough she was one of my daughter’s team leaders. It’s probably not too often that a team leader makes such an impact. This one did and she made me realize the direction we always needed to go in.

We had a rough start as we entered our new world of IEP meetings and the invited guests known as “the team”. We really were clueless as we sat and listened to all of these people read their reports. We signed the first few IEPs but when our daughter was still making no progress and still miserable we started questioning everything and disagreeing with the team. The team leader would sit at one end of the table and I would sit at the other end. We would always lock eyes and try to read each other’s face. This lady was so good at not letting you know what she was thinking. She once told me she could never read my face either. We both agreed on this one.

We disagreed however on a lot of things. Because the team leader was not allowing the team to hear our voices we were forced to hire an attorney and pay thousands of dollars so that our voices would be heard. You would think under those circumstances there would be anger. Yes, in the beginning I was angry, very angry.

As time went on this one particular team leader gained my respect. There was a phone call one day when her voice honestly cracked and she mentioned something personal about her own story. It was that one personal moment that made a difference. And it’s those people that have shared something about themselves that have made the greatest impact. I understand that we all have to be so very careful about what we say and do around each other because there is always that threat of a lawsuit. I’m saying, however, it worked better for us when we gained that personal connection. In those meetings she was always tough as nails. We sat at opposite ends of the table but I respected her and I felt she respected me. As the years passed and she was no longer our team leader she always asked how Kelsey was doing and was genuinely interested.

Unfortunately cancer took her away a few years ago. The last time I ever saw her we hugged which seemed so strange at the time. Never in a million years would I have thought I would ever be hugging my daughter’s team leader. She asked me if my daughter was happy. I said, “yes,very.” As I walked away I realized no one had ever asked me that before. From that point on I understood how we would keep moving forward. Happiness would always be the place we were trying to get to.

Getting there isn’t easy. You face many bad days along the way. Happiness doesn’t mean there are no rules, boundaries and responsibilities for your child. It’s because of those rules, boundaries, and responsibilities at home, in school, and in the community that happiness is found. It’s about the consistency of those expectations that make things predictable.

This journey forces us to continue moving and unfortunately happiness is not always a permanent place. In a few months as my daughter ages out and begins to venture down an unfamiliar road happiness will be something she will have to find again. But she will. She will because someone once pointed out to me that is the ultimate goal to achieve.

Halloween, Autism, And The Blue Pumpkin

As Halloween gets closer the number of posts about the blue pumpkin increases. The idea of the blue pumpkin was thought up by a mother of an autistic child. She thought if people saw her child carrying a blue pumpkin they would be more understanding when he didn’t run up to every door and say trick or treat. First and foremost, kudos to that mother for trying to be proactive for her child. Kudos to that mother for trying to find a way to make Halloween more enjoyable for her child.

The idea of the blue pumpkin has caught the attention of many. Some think the idea is wonderful. Others however believe it is stigmatizing. They point out we should not have to put a label on our children in order to have people be more accepting of them. People after all should know that not every child ringing their doorbell is the same. Some of our children are different and have different needs.

One can’t talk about the blue pumpkin without comparing it to the teal pumpkin. The teal pumpkin project was started in 2014, again by a mother, to raise awareness to food allergies. The idea is to put a teal colored pumpkin in front of your house to alert those children with food allergies that they can choose a non food “treat”. The difference here is that the teal pumpkin doesn’t single any child out. The teal pumpkin project enables the community to send the message that they understand your needs and will try to accommodate you. The blue pumpkin does the opposite. It asks the community to understand your needs so they might be able to accommodate you.

There has been an increase in autism awareness and inclusion for the last several years. Unfortunately it is not nearly enough. Our communities and schools may say they are inclusive but they really aren’t. Instead of going on and on about colored pumpkins we should be talking about how we can eliminate the need for mothers having to make sure society understands their child. In a great community people would put out a blue pumpkin as well as a purple one. In a completely inclusive community however, there would be no need for teal and blue pumpkins. That orange pumpkin out front would be a welcoming sign for all.

Finding Her Voice

If you asked me then where I thought we would be today I would have been very very wrong. It’s amazing to see how my daughter who would not talk to anyone when she was younger can talk their ear off now.

My daughter learned to talk at an early age. By the time she was one she was stringing words together. When she was in preschool however she would not talk to anyone other than her own family and in her own house. We were told she was very shy and would outgrow it. How were we to know otherwise.

Kelsey started kindergarten and still was not speaking to anyone other than us. It was then that we sought professional help. After doctors visits and evaluations she was diagnosed with selective mutism. Selective mutism is a disorder in which a person is capable of speaking but because of anxiety they can’t. It’s frustrating to the child and everyone around them.

Anxiety and selective mutism had a powerful grip on my daughter. She was miserable at school and would come home and fall apart. Not being able to communicate her wants and needs led to major meltdowns. Sometimes it took hours before she could finally calm down. I’ve said this before but when my child could not communicate it was like hell on earth. A hell on earth that not everyone can understand.

We chose to try medication to see if it would help her speak. It did. Soon after taking anxiety medication she started whispering to her teacher at school. Eventually the whispers turned into louder words not only to her teachers but to her peers as well. Medication worked for her and improved the quality of her life. Kelsey had found her voice. The frustration and meltdowns were beginning to lessen and she was able to start moving ahead.

Today as a young adult she still has difficulty in unfamiliar situations and with unfamiliar people. Through the years it’s something we have learned to expect. We have also learned how to handle it. When she is comfortable and the conversation is right however, she can and will talk your ear off.

It seems like another lifetime when we were in the clutches of selective mutism. We fought hard and never gave up. Long gone are those days of silence and meltdowns. Kelsey’s voice was found!

Lobster Macaroni and Cheese

She came through the door with a big grin on her face. I knew right away that she had a story to tell. Some days she comes home and can’t wait to tell me about her day. She can’t wait to tell me her new story. Kelsey is a story keeper. When someone tells her a story she never forgets it.On this particular day her teacher told her a story about a weekend trip and ordering lobster macaroni and cheese at a restaurant. For the life of her Kelsey can not imagine why anyone would put lobster on macaroni and cheese. As she was telling me the story about her teacher’s adventures she kept asking me in disbelief if lobster macaroni and cheese was a real thing. Perhaps one day she won’t question it and tell the story differently. But for now I enjoy hearing it just as she tells it.

Through the years Kelsey has had many people help her along the way. What she remembers most about the people she has interacted with are the stories that they have shared with her. Most people don’t realize the impact that sharing something as simple as a story can have. It’s these stories like the lobster macaroni and cheese that keep my daughter happy and secure.

Not a day goes by that I don’t hear a story that someone has told her. We’ll be in the car or eating dinner and all of a sudden she starts to tell us one of her stories. Some of them are from long ago and I’ve heard over and over again. She never forgets them and hangs on to each and every one.

Stories connect us to one another. My daughter is very fortunate to be connected with so many people in her life. Some of these people she sees every day some not too often anymore. She carries all of their stories with her though and smiles as she tells them. Through the years she has gained much more than just the goals on an IEP.

Realizations At The End Of The Road

Maybe it’s because this is our last rest stop, our last year in public school, or maybe it’s just because I’m now one of those old folks that is so much wiser but this last leg of our journey has made me very aware of how fortunate we are. Perhaps it’s the reminiscing part that is forever running through my head these days but I have realized the great respect I have for the many people that have helped my daughter and us as a family get to the point we are at now.

Often times along the way we felt that it was us against them. At some points we have had to hire an attorney to be on “our side.” I know what it’s like to be an angry parent. Never would I have thought back then that we would be in such the good place we are today. We may not have always agreed but we were always able to compromise and a great deal of respect was made along the way.

In the beginning as a young parent with a newly diagnosed child it’s hard to comprehend why other people don’t feel the same urgency and need for services that you do. It’s incomprehensible that the world doesn’t feel the same way about your child as you do. We get angry at our school district, we get angry at our team, we get angry at the world. You become panic stricken and want everything done now. Starting out on a journey traveling down an unfamiliar road and not knowing where you are going to end up will make you do and say anything that you think will lead you in the right direction. It’s when you learn to work with the people around you that you keep moving forward.

And now as our journey with our daughter is about to take a new turn I’ve realized that even when the times we were in a really bad place or the wrong program we always found a way to make things right. Sometimes we put our trust in people we hardly knew but it’s some of those people that stayed with us through the years that have earned my deepest respect. Today I realize how fortunate we are to have met so many people on this journey that we have so much respect and gratitude for.