Finally we have a program set up for our daughter when she turns 22 and ages out of the public school system. This part of our journey has been hard and frustrating. Oftentimes I felt as if I was drowning in an unknown sea. Every time we would come up with a plan a wave would come crashing over us and knock us down. Every time we thought we found the right program that met our daughter’s needs we were denied by the state because there was not enough funding to cover the cost. Finally after many months of grabbing my phone every time I heard a whoosh I got the email saying a program was approved.
Now what? Now comes the scary part. The papers have been signed and the plan is in place. Now the reality sets in. In 81 days my daughter’s life is going to be totally disrupted. She will no longer be a public school student on an IEP. She will no longer be picked up every morning and taken to the place she loves. Instead, she will become an adult in a day hab program.
She’s scared and I’m scared too. She’s scared because this is unfamiliar to her. All that is predictable and familiar is going away. Her comfort zone is about to be taken away. She is expected to be brave and do one of the hardest things she has ever done.
And me, I’m petrified. My biggest fear is that she’ll run. My daughter is not a runner but she has occasionally bolted when she was really scared. I can count the times she’s done it on one hand but that doesn’t make it less frightening. What if she does it now? What if she does it as an adult in an adult program? It’s a thought that never leaves me.
Our journey has been filled with many rough times along the way. Perhaps it’s just because it’s in the moment but this process of transitioning into adult services seems worse. Change is not easy and as difficult as this is going to be I know we will get through it. As scared as we are we will continue to keep moving forward on this journey one day at a time.
For years we would sit in the back far away from all of the action. I often wondered who those people were up front and admit sometimes I felt envious. When my daughter was younger she was unable to tolerate crowds and noisy places. When it came time for those school vacation things like the circus or Disney On Ice we were always the family sitting in the back.
Having two older brothers meant that Kelsey had no choice but to come along for the ride. While her brothers were enjoying the show Kelsey would be covering her ears, closing her eyes and squeezing my hand so hard that my knuckles would turn red. We spent more time in the bathroom than actually watching the show. Despite it being so very hard to go to these events we kept going year after year.
Eventually Kelsey’s older brothers lost interest and didn’t want to go anymore. Kelsey however saw this as routine and expects that we will go every year. The funny thing is that since we stuck with it and kept going as hard as it was year after year we were able to keep moving closer and closer up to the front row.
A few years ago we bought tickets to the 3rd row for Disney on Ice. It was a risk because we never sat that close before but the time was right. We had been going to the show for several years and Kelsey had become so much more comfortable in crowded places. Sitting up front really is a different experience. It’s louder, it’s brighter, the people are closer to you and you can feel the cold from the ice. Through the years however, she learned to use ear plugs and knows that my hand will be there to squeeze.
Those 3rd row seats turned out to be a success. There was no stopping this family now. Next year it was going to be front row seats. And yes it was! We the family that for so many years sat way up there in the back were sitting front and center in the front row. It was hard, it was frustrating, it was tiring, but we never gave up. The journey is hard but the destinations are amazing.
Soon it will be time for you start a new amazing journey. In a few months you will be leaving school and starting a new program. It’s going to be very hard and scary for a while but I know in time you will be accomplishing great things and you will be as happy as you are today.
When you started high school and started going out in the community there were many things you had to learn to do. One of the first trips you took was to Ocean State Job Lot. You took the MBTA bus and were a little overwhelmed. The bus seemed so very big and it wasn’t easy to get on and off of. It even started to move before you were sitting down in a seat. You made it to the store and with your teacher’s help you bought two cans of soup. Kelsey I still have those two cans of soup. I kept one and took the label from the other one and put it in the locket that I have worn around my neck every day since. That day you took the bus was nerve racking. There were so many new tasks that you had to learn to do but you survived. You survived that day that was so new to you.
Look at you today. The bus isn’t so big and scary anymore. You even took it without a teacher the other week.You can go into a store now and buy something without your teacher’s help. Those things that were scary before don’t seem so overwhelming anymore.
Kelsey whenever you start to learn new things or go new places and are feeling scared and anxious I want you to remember those two cans of soup. With practice you can accomplish anything. Sometimes it takes a long time to learn new things but you have proven that you can do it. It’s okay to be scared and anxious but it’s not okay to give up. Where would you be if you gave up after that first bus ride and your trip to the store? It wasn’t easy but you did it.
I am so proud of you for all that you have done and can’t wait to see all the new and exciting things you are about to do.
It’s here. The last IEP is here and taking up every thought I have. I knew it was going to happen, I just didn’t know how tired I’d be at this point. These past few months have been a journey in itself. The road to transition is not an easy one.
To be able to prepare my daughter for this next transition I had to prepare myself first. In the beginning I was full of fear. Fear of making wrong decisions, fear of leaving behind something that I have known for the last 17 years, fear of leaving behind the people that have become my support system, the people that have become my friends, family, and mentors. Suddenly I found myself leaving the place that I had learned so well to navigate and arriving at an unfamiliar destination that I knew little about.
Next came grief. When you’re in a good place and have to say goodbye, it’s sad. My thoughts are filled with all of the happy days. There have been many many days when my daughter came bursting through the door after school grinning from ear to ear and anxious to tell me about her day. There were many proud moments when goals were met, goals I never imagined could have ever been reached. My phone is filled with pictures sent from school. I have picture after picture of my happy daughter, my proud daughter, my silly daughter, my daughter doing amazing things. It’s strange but the bad days, the rough times are not on my mind. The days that brought so much anger and frustration don’t really matter now. Instead, it’s all of the good things that I remember and that is what makes it so hard to move on. I’ve cried many tears knowing it’s time to start saying goodbye.
Somewhere along the way however, I reached the point of acceptance. This IS going to happen, this WILL happen. My thoughts then are let’s MAKE it happen. There is so much more for my daughter to accomplish and do. There are so many more people to meet and places to see. In order to grow and thrive we all must take risks, our children included. My daughter is about to begin an exciting new adventure (okay, exciting but terrifying) and I’m ready to get her where she needs to go.
Now it’s time to let her in her own way reach the point of acceptance. She must accept that she will be transitioning into a new program and entering a whole new and very unfamiliar world. This may be her last IEP but it’s not the last of her incredible journey. It’s going to be a bumpy ride for some time but not forever. There will be much sadness and many tears along the way but there will be the day when her smile returns. When that day does happen she will be able to realize that she still has all that she left behind that day she sat at the conference table for her last IEP meeting and all that she has gained as she continues her journey. Every last leads to a new beginning and begin we will.
The road to transition has taken a hold on me this week. As this journey takes us farther down the road and closer to the day my daughter turns 22 I become more and more fearful. Afraid of the unknown. Afraid of not knowing what this next destination will hold for her and us as a family.
Transition, I have discovered, is not an easy thing. It’s like traveling to an unfamiliar country that you thought you knew about but once you got there you were totally lost. As our daughter got closer to turning 22 and aging out of public school we heard more and more about transition. It was always however just a word, it was never a reality.
And here we are today facing that reality. A reality for me but not yet for her. She still has no idea of what lies ahead. We are now at the point of the process of finalizing where her destination will be. Getting to this point has not been easy. As it becomes more final it gets more scary. We know the destination but little else. How she is going to get there, how long she’ll stay and what she’ll do when she’s there still has to be figured out. After all of that is done we then have to explain it to her.
Just how does one explain to their child that functions on all that is predictable that their world is about to change? This perhaps is what frightens me the most. Her world is about to be rocked and she won’t understand it until she actually goes through it. As a mother this is a hard thing to deal with.
I’m bracing myself for the rough road ahead. There is no doubt in my mind that eventually she’ll do fine and this transition will just be one more obstacle that we have made it past. Getting to that point however is going to be awful.
The transition process has been and continues to be an unsettling time along our journey with our daughter. The process forces us to keep moving ahead even though we are unprepared. Knowing that she is going to have to make an incredibly hard transition haunts me each and every day. Thoughts of not knowing where and when we’ll be able to stop and rest easy again have taken hold of me.
When my daughter was young she was often referred to as being quirky. It wasn’t until she reached middle school that she was formally diagnosed as having Autism.
I began to notice when she was in preschool that she was different than the other kids in her classroom. I came in to her room one day early to pick her up and I noticed all the other little girls were playing together and she was off playing by herself. She seemed to be the odd child in the corner. This pattern continued throughout elementary school. Not by choice, she would have liked to play with the other kids, she just didn’t know how. Those social rules that come naturally to most of us didn’t to her.
At home she was obsessed with her dolls. The dolls became her friends. She would talk about them like they were real. There would be stories about one of them having a birthday or being sick or going on a field trip. We knew them all by name and there would always be at least one of them coming with us wherever we went. When most other girls her age could leave them at home she couldn’t. Her dolls absolutely had to go wherever she went. Again she looked like that odd girl carrying her doll with her.
She preferred to stay at home and going anywhere took a lot of planning. Every time we would go to a shopping mall she would flop outside the door and refuse to go in. If we did manage to get inside she would clutch my hand for dear life and cry. It wasn’t until much later that I realized it was the noise, the people, and the confusion she couldn’t stand. I wish back then someone could have explained to us how best to help a “quirky” girl.
Elementary school was challenging. She continued to lack social skills and couldn’t keep up with her peers. It was overwhelming and she was letting us know things were not right by have meltdowns every day after school. There was no place for a “quirky” girl to fit in.
It wasn’t until middle school that all of those quirky things she was doing turned into a diagnosis of Autism. She was now the “Autistic” girl. It came as no surprise to us. It just took a long time to get to the diagnosis.
Often times “quirky” girls are diagnosed much later than boys. They are labeled as being shy or nurturing or yes spoiled. Girls, especially girls that speak well, are skipped over and left to see if they’ll grow out of their quirkiness.
As for the diagnosis, it doesn’t change my daughter. She is still who she is. It does however make it easier to explain to the world why she is who she is.
My daughter has epilepsy. We are fortunate that her seizures are very controlled and have been for some time now. That however doesn’t make the worry go away. I’m always waiting for the next one.
Most days it’s just a thought in the back of my head. When she’s not feeling well however that thought starts to take hold of me. This was one of those weekends. It’s Sunday morning and she has slept over 12 hours now and still not up. I sit and wait. Chances are she’ll get up and be feeling great and just needed the extra sleep. It’s nearly impossible though to get that “what if” thought out of my head.
What if today’s the day of her next seizure? She’s had seizures since she was a baby and we have become quite familiar of what to do. We automatically go into seizure mode. There is no thinking of what to do, it’s just a very natural instinct that takes hold of us. We get her through it, put it behind us, and continue moving on.
Being able to move forward however doesn’t mean that the past is behind us. To this day I have flashbacks of the days when her seizures weren’t controlled. The 911 calls, the emergency rooms, laying awake next to her all night in a hospital listening to her breath. Those memories stay with you forever.
But as I sit here waiting for her to wake up I eventually take control of my fears and realize that the chances of her having a seizure today are slim. My heart goes out to those parents whose children have multiple seizures every day. I can’t even imagine how they make it through one day to the next. Those parents are the incredibly strong ones.
Having a child with a medical condition is scary. Feeling helpless as you watch your child suffer is awful. Over time however you learn to take control, control over as much as you can at least, and that helpless feeling lessens. You become better educated about your child’s condition, you seek out the best doctors and learn to advocate for the things they need.
Having a child with a medical condition also teaches you about what really is important in this world. It’s not about who wins or loses a football game (even though that can be quite painful sometimes). It’s not about if your favorite restaurant closes or if your tv show is cancelled. The little things in this world are not important. Our family, friends and neighbors are what’s important and sometimes we need to be reminded of that.
It’s been 14 hours, I go into her bedroom and wake her up. She pops her head up and asks if it’s a school day. I say no and she says she is going to sleep one more minute. I’m relieved that she didn’t wake up to a seizure. She’ll get up and we’ll go about our day. Today will be a day to be thankful for. In the back of my mind though I’ll be waiting for the next seizure.
I sat awake most of the night. The house was quiet and the only sound to be heard was the frozen rain hitting against the window. Deep in thought each raindrop felt as if the tears of 2019 were being let go. 2019, a year filled with tears of happiness, joy, sadness, and frustration. Tears that most mothers know very well.
2019 was a year of success. My daughter met many goals and made great accomplishments. We give much credit for this success to our village. Our village of people, some that have been with us forever and others that we have just met this past year. Some of you probably don’t even know the role you play. We know though, and your kindness and support often bring tears to my eyes.
Despite all of the good days 2019 brought, the year was filled with bad days too. These are the days you don’t see posted on Facebook. These are the days of a girl overcome with anxiety crawled up in a ball on her bed unable to function. Days of a family angry with one another because there is no where else for the stress to go. Days of feeling so frustrated with the world we live in and trying hard to hang on to hope as it dangles by a thread in front of your face. The bad days are the days you hide the tears. You put on a happy face and pretend that everything is wonderful. So many tears left for no one to see.
Today the first day of 2020 brings a new set of tears. 2020 will be a year of change. A year of change for a family that relies very much on predictability. Granted predictability is never guaranteed from one day to the next but in this house we try our best to make it happen. In the Spring our daughter that thrives on predictability will age out of the public school system and venture down a new path. A new path on this incredible journey that will be filled with the unknown and unfamiliar. I knew 2020 would be her exit year but I never expected it to get here as fast as it did. Tears of fear fill my eyes.
I was reminded the other day however when we were seeing one of our favorite princesses that everything was going to be okay. “Anna” walked into the room and told everyone how scared she was to become Queen. She confessed she was never a Queen before and it was all new to her and she didn’t know what she was doing. A great story told by one of my daughter’s favorite princesses. A story that we can remind her of when she transitions in the Spring. A story Queen Anna never realized the impact it would make nor the tears it would bring to my eyes.
2020 has just begun. The first sun has not even set and already I know there will be days of sitting by the window and watching the rain fall. The journey is exhausting and the tears are many but it’s worth it.
For many of us the true magic of Christmas is lost. With time, and as our children get older, Christmas becomes less and less magical. Gone are the beliefs of Santa, elves, and flying reindeer. No longer do our children lay awake Christmas Eve listening to each and every sound hoping to hear a thud on the roof. No longer do the twinkling of Christmas lights outside fill us with sheer joy. The Christmas cookies look a little less smaller and opening the advent calendar is not as fun as it was when we were kids.
We have been blessed in our house with a child with special needs that never lost that Christmas magic as she got older. The excitement, wonder, and belief is still there. Christmas morning is as magical now as it was when she was a young child.
The bad days, the frustration, the endless paperwork, the phone calls, the worry, the tiredness, are all washed away Christmas morning as we watch our daughter.Year after year we see the gleam in her eyes and the smile on her face as she wakes up in the morning to see presents under the tree and an empty glass of milk and cookie crumbs left by Santa.
We can teach her to become more independent and act more mature but we can never take away her belief in magic and the innocence of childhood. Nor should we. She is who she is and isn’t she really the lucky one? As we get older and as our children get older Christmas and other holidays change for us. We enjoy decorating, exchanging gifts and being with family and friends but the excitement and anticipation has left us. Wouldn’t it be nice to be able to experience that again?
So come Christmas morning we’ll be up early in our house. My only wish is that I can make the coffee before the wrapping paper starts to fly. There will be smiles, laughter and lots of princess presents. Most of all however, there will be a family that is blessed with the joy of being a special needs family.
She sticks out like a sore thumb. In a sea of little girls dressed in tutus and princess costumes she is the oldest and tallest one there. She keeps coming back though. She comes back because she feels welcomed and included.
I’ve gone to a lot of these princess events with my princess obsessed daughter. What strikes me each time is the kindness of the princesses. My daughter is quiet and tends to stay away from the the crowd. The princesses however always make a point to interact with her and ask if she would like to join in. They don’t push, they don’t judge, they just accept her for who she is. All of the princesses that we have met, and there have been many, have allowed my daughter to be included in her own way.
What a wonderful world this would be if our society as a whole could learn to embrace every child as a princess does. Oftentimes as parents we feel that our children are not welcome in certain places. And yes you can say they are welcome everywhere but they really aren’t. Inclusion is about being welcome, feeling welcome, and being able to participate.
The first step in making inclusion work is adults making it happen. Yes, that means you and me. We are the business owners, the school staff, the parents, the local community, the elected officials. As a society, as a community, we need to accept, understand and accommodate everyone. With a little hope, faith, pixie dust, and princess understanding we can better the lives of many.