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.
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.
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.