Mrs. Sweeney’s Ornaments

Through the years my daughter has been fortunate to have had some wonderful paras. They not only provided her with the support she needed academically but with the emotional support as well. They learned what worked and didn’t work for my daughter and capitalized on it.

Anxiety has a great hold over my daughter. It has always made her journey that much harder. It was much more difficult when she was younger. Going off to school most mornings was a hard fought battle. I was exhausted by the tine she finally got there. She was in a panic and the day had only just started.

There was one particular para in elementary school however that Kelsey latched on to. Suddenly she was looking forward to go to school to see Mrs. Sweeney. Mrs. Sweeney made her laugh. Mrs. Sweeney made her feel safe.

My daughter and Mrs. Sweeney became good buddies as the year progressed. This para was such a motivator and positive role model for her. She taught her how to work and have fun at the same time. School really wasn’t a bad place.

When my daughter moved on to the next grade with a new teacher and para Mrs. Sweeney remained a big part of her life. There were unexpected emails all in pink checking in to see how things were going. There were Valentine’s Day cards in the mail always full of sparkles and glitter. And there was always a Christmas gift. For many years she would receive an ornament to hang on the tree. Each year Kelsey would find a special place on the tree to hang Mrs. Sweeney’s ornaments.

This year as we were decorating the tree and putting up Mrs. Sweeney’s ornaments I was reminded the difference one person can make in the life of our children. The journey is hard and not asked for. Perhaps though we are the lucky ones. Lucky to know firsthand what kindness is. Lucky to have met Mrs. Sweeney and so many others that have made a difference.

The Elves

It’s Dec 1 and those elves on the shelf came back. And yes we have two of them. It seems that a few years ago Joby our original elf, got lonely and thus Buddy the Elf came into the picture. This year those elves came back with a letter and a purpose.

My daughter does not like change. If everything could stay exactly the same forever that would suit her just fine. When we got a new kitchen table she was quite upset. Getting a new mattress for her bed was not so easy. And now when we mention that we will be needing a new car soon she makes it clear that she will hate whatever we get. Unfortunately this coming year she will age out of school and transition to adult services. This transition is going to be very difficult and I have been working with her school since September to try and make it as easy as possible.

Through the years my daughter has made me do a lot of thinking outside of the box. Talk about having a fried brain, mine has been fried, baked and broiled beyond repair. So with what little energy I have left I’ve decided if I have to put up with those annoying elves everyday that make me sometimes jump out of bed at 2:00 a.m to move them I’m not going to let the opportunity of their return pass us by. Those elves are going to be a part of this transition process and are going to teach the lesson of change.

The elves suddenly appeared this morning with a letter to my daughter detailing what they have been doing since they last visited the shelf in our house. Santa’s workshop was getting very overcrowded and he needed to open another one. Some of the elves had to leave the workshop at the North Pole and relocate to a new one somewhere in the icy North Mountains. Santa chose his best elves, Buddy and Joby, to help start up the new workshop. Joby is a little sad about the move however and is still trying to get used to her new surroundings. Hmmm. Something similar to my daughter moving to a new program when she ages out. I bet however by the time Christmas rolls around and those elves have to go back to the workshop we will be able to have convinced Joby the Elf to give her new surroundings a chance.

Those elves will move all around our house until Christmas Day. They will get into all kinds of mischief but will teach a lesson too. Perhaps when my daughter transitions to a new program and is in new surroundings she will remember her two elves, Buddy and Joby, and how they felt when they moved to a new workshop. Yes call me crazy but that is how we function in our house. I wish it could be as simple as just moving the elf from one spot to the next every night but it isn’t. We do things different here and that’s okay.

Some Things Never Change

It’s been a Frozen 2 weekend for us. My Elsa and Anna obsessed daughter has been waiting for the release of Frozen 2 for months. Finally the day came and all of the questions she has been asking were answered. Some of those answers she was happy with, others she wasn’t.

We learned in the first movie that the Frozen phenomenon wasn’t just about the princesses. It was also about the songs. Most of us can belt out at least a few lines of “Let it Go.” Disney held true to their promise that Frozen 2 would have just as many memorable songs as the first movie. The song “Into the Unknown” being its anthem song.

As I sat there in the movie theater though with my daughter it wasn’t “Into the Unknown” that captured my attention. It was another song called “Some Things Never Change..”The song is about the passage of time and how we all keep growing older. It says that although the future is unknown somethings never change. It struck me because soon my daughter will be aging out of public school and moving into adult services. As unfamiliar and unpredictable as that is going to be there will always be one thing that never changes. It’s the bond between us.

Time is going to keep moving forward. The day will come when all the questions we have been asking about this next phase of our daughter’s journey will be answered. Some of those answers she’ll like, others she won’t. I’ll hold her tight though and she’ll make it through.

“Some Things Never Change” from “Frozen 2” soundtrack:

Yes, the wind blows a little bit colder. And we’re all getting a little bit older. And the clouds are moving on with every autumn breeze. Peter Pumpkin just became fertilizer

And my leaf’s a little sadder and wiser.

That’s why I rely on certain certainties. Yes, some things never change. Like the feel of your hand in mine. Some things stay the same

Like how we get along just fine

Like an old stone wall that’ll never fall. Some things are always true. Some things never change. Like how I’m holding on tight to you.

The leaves are already falling. It feels like the future is calling.

The winds are restless. Could that be why I’m hearing this call? Is something coming? I’m not sure I want things to change at all. These days are precious .Can’t let them slip away. I can’t freeze this moment. But I can still go out and seize this day

The wind blows a little colder. And you all look a little bit older. It’s time to count our blessings Beneath an autumn sky

Some things never change. Turn around and the time has flown. Some things stay the same. Though the future remains unknown. May our good luck last. May our past be past. Time’s moving fast, it’s true Some things never change

And I’m holding tight onto you. Holding on tight to you. Holding on tight to you. Holding on tight to you. I’m holding on tight to you

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.