I am a 50 something mother of 3 children. My youngest has Autism, epilepsy, anxiety, attention deficit disorder, and an intellectual disability. I write this blog to spread awareness about raising a child with disabilities. I write about the good, the bad and everything in between. I have also published a book about our amazing journey called Farm Fresh Eggs.
Another rainy Saturday and nowhere to go. The second wave of the COVID virus was upon us and my daughter was not happy at all. As much as we try to hide some of the realities of our world she always finds out. Today she is well aware that places are going to start shutting down again and without putting it into words is letting us know how she feels about it.
I grab a mask and head to the nearest store in search of a gingerbread house kit. Walgreens does not disappoint me. I grab a kit and all the candy I can find. Thirty nine dollars later I am confident that I have found a great distraction to this day. We’ll spend the afternoon putting this house together and hopefully forget a least for a little while about everything else.
First of all let me just say that putting together a gingerbread house ( even when the pieces are already preformed) is not an easy task. It’s even more difficult with a very irritable daughter that has had enough of this pandemic. There is not enough icing in the world to make this house stick together today.
After a few attempts, roof and all, we finally get the house to stand. Now come the decorations. And decorations we certainly have. There is no shortage of candy here. My daughter however has all of a sudden developed a strong disliking of the color red and separates all of the red candies.
The gingerbread house is completed and much to my relief is still standing. Candy covers the roof and sides. Blue, green, yellow. All but red. The red ones sit in a bowl on the table. I of course as you all would too grab those candies and start eating away. My daughter tells me to stop. Her words, “You can’t touch red during a pandemic.” She knows the world around her is in the red and it’s not good. Suddenly it all makes sense to me and those m&m’s aren’t as appealing anymore.
2020, the year of the gingerbread house without red candy. It’s so sad yet so appropriate. There is hope however and I’m sure 2021 will find our gingerbread house covered in every color, including red.
The rain never stopped today and we never left the house. With extra time on my hands I started looking through the photos on my phone. I scroll through the 1000’s of them and am reminded of so many things that have passed us by. I have come to rely on the pictures on my phone as the keeper of my memories.
My daughter is not one to take photos. She doesn’t need to. She has the uncanny ability to vividly remember many things both in the present and long ago. Her mind is her own camera and she can remember places and events as she pleases.
She talks a lot about her memories; both the good and the bad. Unfortunately the earliest memory she recalls is not good. She remembers the time she was left in the bathroom in preschool. She can recall the color of the floor and the sound of someone finally opening the door to find her in there and bring her back to her classroom. There have been other times that she also remembers with great detail when she found herself alone and feeling lost. Her first day of high school when the van driver let her off at the wrong door and told her to “just go wait inside.” She did go inside and she can recall all the other kids in the lobby talking in groups and then suddenly they started walking up the stairs and she was left alone. She has a few other memories unfortunately of times being “lost” that she can recall with great detail.
Despite the bad memories she has many good ones that she often talks about. She randomly pulls them from her head and talks about them as if they just happened. One such memory is of elementary school when they played some sort of game on the first day of school where they tried to guess whose shoes were whose. To this day she can still remember what shoes everyone was wearing. Another story she tells is of a community trip to McDonalds in high school where they ate outside and all of a sudden they were surrounded by pigeons. Her hamburger ended up being thrown to the ground and a teacher’s purse ended up swatting those pigeons away. Most of us probably would have snapped a picture or two of those pigeons; she did it in her head.
She carries so many other pictures in her head of the memories that have passed her by. She can recall things like what people were wearing, where they were standing or what they were holding. Things most of us couldn’t accurately recall without the help of an actual photo. After coming home from Disney on Ice one year she told me Princess Merida must be left handed because she was holding her bow and arrow in her left hand. I looked through my photos and sure enough she was right. There’s not too many of us that would remember something like that.
I wonder what her memories will be of her time spent at home these last several months. What will she remember about COVID-19? She takes notice now of people’s masks and can remember what kind they were wearing the last time she saw them. She can also remember if something is different in a background on a zoom meeting. If you zoom one day from your kitchen and the next from your bedroom she’ll not only remember but she’ll remember what color the walls were in each room. I hope as time goes by she will be able to have found some memories from this time that she can pull from her head and smile about. I hope she is able to have some good memories that we would have taken pictures of on our phone.
Sometimes life gets the best of you and sweeps you up into a whirlwind of time that you just can’t keep up with. And so it’s been in our house these past few months. Despite our days being filled with the same mundane day to day tasks, the routine has finally become predictable and consistent allowing one day to turn into the next. We are on a roll and all is good but the days go by so quickly and time keeps rushing past us.
Routines play such an important part in our house. It took Kelsey a long time to adjust to a new routine of staying home when everything shut down because of COVID-19. It’s been months since she got on a van in the morning and spent her day out of the house and in a program. She finally however settled in and became content to be at home.
Unfortunately that all changed last month when our dog passed away. Suddenly our day to day routine was disrupted in the most heartbreaking way. Her passing left an enormous void. It impacted Kelsey more than I thought it would. The day I took the dog to the vet and didn’t come home with her was the first time I ever saw Kelsey cry real tears. Real tears of real sadness.
There have been other sad moments that she experienced and although she was sad she never cried over them. Kelsey lost her grandparents when she was much younger. She was very close to them and yet when they passed she never shed a tear. I wonder why she cried now. Perhaps it was because she is older and realized the emptiness in the house and the changes it would bring to her routine.
We have since welcomed a new puppy into our house. Kelsey quickly took hold of the new daily routines that a puppy brings. She has been able to hold on to her familiar routines of being at home and add the new fast paced (very fast paced) routines that a puppy brings. We have, as a family, adapted to spending our days at home during the pandemic that has swept across the nation. Days at home filled with familiar routines and puppy mischief that ever so quickly pass us by.
The tree by her bedroom window that the songbird would come and visit is gone. Cut down to make room for someone else’s new dwellings. I asked her if she was sad that it was gone. She said it was okay because the cardinal had moved to another tree.
The view from her window looks different. The tree that grew taller just as she did year after year is no longer there. Surprisingly she took it in stride. Sometimes when things change it’s hard to deal with. Not this time. She reasoned that there were other trees for the bird to live in.
It’s ironic that the tree she liked so much was cut down now just as she is transitioning into new programs. September has always meant back to school and back to all that was familiar. Not this September however. Just as her tree is missing so too are her days of school. The tree and school; two things that have been a part of her life since she was very small. She’s accepting the absence of both remarkably well.
I was expecting this September to be hard for her. Everyone else would be going back to school except her because she aged out. Perhaps however she is realizing that just as the Cardinal doesn’t need the same tree to come to everyday she doesn’t need the same school building to come to. The Cardinal can move to another tree and still sing his songs. She can move to another program and still be okay.
Trees can be cut down and buildings can be closed but memories of them will stay. It’s those memories that make their absences less harsh. And memories she does have. So many memories of what used to be.
Her journey came to an abrupt halt in March. Little did we know that was going to be the last time she went inside her school to learn and practice the skills she needed. COVID 19 had closed everything, school buildings included. My daughter was stuck at home and we were concerned she was going to regress.
She didn’t though. Instead, she generalized a lot of the skills she had spent years practicing in the living lab at school and started doing them at home. Finally she did it. Sometimes we wondered if it would ever happen. Perhaps trying to get her to do things all of those 2 day weekends was not enough time. Perhaps she needed to be home for months at a time in order for those skills to come through.
A product of her school’s “living lab” she certainly is. The living lab at my daughter’s school is a mock mini apartment. There is a bed, a washer and dryer and a kitchen. It’s here that she spent years focusing on life skills. Making a bed,making a simple lunch, washing dishes, and doing laundry are all skills that she learned there. The problem always was however, these skills that she could do at school were never carried over to home. Until now.
These past several months at home we have seen her use all the skills she learned in that living lab. Every morning when she gets up she makes her bed. She insists on making her own lunch and when she is done she washes her dish and puts it away. As for laundry, she really doesn’t enjoy it but nonetheless she does it.
With all of these skills comes maturity. She acts older now. She has become more independent. She may not have left the house since March but she certainly has moved forward. We never know where our journeys will take us but sometimes it’s the unexpected stops along the way that teach us the most.
It seemed like a good idea. She was going to age out so we set her up with a Facebook page. We thought it would be an easy way for her to stay connected to her friends.
It took some convincing but she finally agreed to let us help her set up a page. She found it very fun to personalize it with her pictures. Next came the friends. “Why do I have to have friends?” We explained that the purpose of Facebook is so you can stay in touch with them and see what they have been doing while you’re apart. Here’s a list of people you know. “Do I have to put them all on?” No just pick a few to start off with.
With princess pictures and a handful of friends her page was up and running. Now we thought this would get her more interested in some of her friends from school that were her same age. It would be perfect. She could “socialize” from her own house. This would be great especially since we were in the midst of a pandemic and staying away from others.
Well we were wrong on that thought. Facebook during a pandemic, we have discovered, has left our daughter focused on three things. First, our Governor. Once she discovered that Facebook allows you to search people she zeroed in on our Governor. She expressed her thoughts to him daily about his decision to shut down everything. She wasn’t bothered that stores,movie theaters or restaurants were closed. It was her princess parties that was making her angry. The Governor had left her cut off and she was not too happy about it. I don’t know how she learned that she could express her opinions through Facebook but she certainly did. How dare he do this and he should stop being Governor was her daily message. When you are that angry you can learn to do a lot of things. Who would have ever guessed that in 2020 she would become politically active.
Not only did she learn she could track down the Governor but she could also track down EVERY princess party place in the world. And that is exactly what she has done. Princess party places have provided endless online entertainment throughout this pandemic. They have filled their Facebook sites with story times, Princess balls, arts and crafts, cooking and pajama parties. The void they have filled for so many children is tremendous. It’s all good and seems wonderful but…Here’s where it gets tricky and our problems begin. Since we now follow EVERY princess company in the world we are trying to watch EVERY online princess event in EVERY timezone. She’ll show me it’s listed as starting at 6:00 p.m. What she doesn’t understand is that it is 6:00 p.m. CST time or PST time. Hello Elsa we would love to have pajama time with you but not if you’re Elsa from Alaska.
Despite the fact that she doesn’t seem to be interested in having hundreds of Facebook friends she does enjoy her “teacher friends.” Right from the start of her journey through school she always had to be pushed to socialize with her peers. She was always more comfortable talking to her teachers. The same holds true for Facebook. Teachers and other adults always capture her attention. A Facebook page, we have realized isn’t going to change that.
So here we are it’s 2020, we are in the midst of a global pandemic, my daughter has her very own Facebook page, has become politically involved, still has no concept of time and is quite happy with the friends in her life. 2020, to say the least, has certainly been an interesting year in our journey and we still have a few months to go. With masks on we will just keep moving on down the road.
It’s been nearly 5 months since COVID-19 stole every routine that my daughter knew. Most days during these last 5 months a rainbow drawn in chalk has been displayed on the sidewalk in front of our house. When school buildings closed and businesses shutdown in March my daughter fell apart. The routines and predictability that she relied on to make it from one day to the next were suddenly without notice gone. In the beginning she was afraid to leave her bedroom. Gradually with the help of her support team at school she was able to come out of her room and eventually step out the front door. To take that first step and venture outside was a huge accomplishment. I was relieved that finally the sun would hit her face and we would be able to stop giving her vitamin D supplements. Out she went with a bucket of chalk. The first thing she drew was a rainbow. Drawing a rainbow out front every afternoon was to become part of her new routine. Let me just say we couldn’t be happier that she was outside every day drawing rainbows but it has left me constantly singing the rainbow song in my head day after day. “Red and orange, yellow, green, blue and shiny purple too…all the colors that we know…live up in the rainbow.
As the days have turned into weeks and the weeks have turned into months my daughter has lost the spark that it took her so long to find. Gone are the days when she would come bursting through the door after school eager to tell me about her day. She was always so full of life talking about what her teachers and classmates did. Instead, over the past 5 months, we have heard her say some very disturbing things. “I don’t want to live anymore. I want to die like the old people.” “When I was outside I felt like my whole body was going to jump out of my skin. I forgot what the sound of an airplane was like.” “I’ve been inside so long I forgot who my relatives are.” “I’m afraid I’ll give someone else my germs if I talk to them.” Statements like these became the new norm those first few months. They were difficult to hear. Our journey through COVID-19 has not been an easy one.
As the months have passed by however, it has gotten easier. The comments are less harsh. Days that seem to last forever and are filled with endless free time and iPad time is the new routine. Her obsession with Disney Princesses has kept her going. I never knew there were so many princess event businesses out there. From story times, cooking classes to princess balls they are providing something online every day. Something to look forward to each and every day. As for our two favorite princess places, Sugar Plum Parties and Spark A Dream Parties, the void they are filling is huge. Many things have disappeared to her but she has come to realize that her princesses are still there. We were lucky enough to venture out recently to our first in person princess event. It was going to be held outside and be different than what she was used to but she was excited to go. Gone are the days of much needed princess hugs. Masks and social distancing etiquette are well observed with our princesses. The event helped fill the unbelievable void but that spark that was once there still didn’t come back.
I’ve come to realize that it’s going to take a long time for that spark to be ignited. She aged out in May so she won’t be returning to school in the Fall. I believe even if she did go back we would find her coming home less enthused than before COVID-19. Just as her princess events are different so too would be school. She would look forward to going but come home lacking those much needed and so desperately wanted personal interactions.
She aged out in May, it’s now August and she is still at home waiting to transition into her new adult day programs. Her journey has been long and filled with times of moving full steam ahead to just chugging along. We have faced many roadblocks along the way but nothing has stopped us from moving ahead until now. COVID-19 has left us broken down in the middle of nowhere. The days pass and her destination remains no where in sight. We are waiting patiently for that day she can begin moving forward again. We are waiting patiently for that day when transition will be behind her. We are waiting patiently for that day when she can have a routine filled with things that make her come home with stories to tell us. We are waiting patiently for that spark to be ignited. If it takes us another 100 chalk rainbows out front however, we’ll keep waiting.
Teachers across the country are being laid off. Cities and towns are scrambling to put together plans to reopen schools and school budgets are being slashed. If and when our kids do go back to school chances are they will not be receiving the education they were getting before Covid-19.
Many school districts have not only cut classroom teachers but they have cut entire programs such as reading and math enrichment, foreign language, art, music and sports. Speech pathologists, occupational therapists, physical therapists, behavioral therapists, as well as guidance counselors, school psychologists, and secretarial staff are also being let go. When your child goes back to school, at a time when they most likely will need extra support, it’s not going to be there.
Understandably a school district can only do so much with the budget they have. We should be thankful that they are working effortlessly to get our children back into their classrooms and acknowledge the pressure they are under. However, as parents, as guardians, as a community, as a village, now is not the time to be complacent and accept what it is. When our children return to their classrooms they are going to need a lot of support. Support one single classroom teacher (as super human we’ve all come to realize they are) can not do alone. Our kids need familiar faces, artistic outlets, physical activities, and the individual services they need to be successful. School districts need to do some serious thinking out of the box and find a solution that will accommodate our children and our teachers.
We need to support all the needs of our children as well as our school staff in order to bring them back into the classrooms. We all understand that it takes a village to raise a child. Our children rely on so many people, especially their teachers in school, they have already have had so much taken away from them, they don’t need more.
This past week I attended a teachers union rally to protest the layoffs in our city. I stood in the crowd and was inspired. Inspiration however evaporates unless it is acted upon. Contact your city or town elected officials. Voice your concerns. Advocate for your child. Advocate for your child’s teachers that have been a continuous lifeline throughout the last three months. This isn’t just about bringing our children back to school. It’s about bringing them back to schools that are safe and staffed with enough support to allow them to succeed.
It has sat there since March 12th. It has sat in the same spot where she dropped it by the door when she last came home from school. The purple backpack that went back and forth with my daughter everyday sat untouched until today.
At the start of this whole pandemic thing we left it sitting there in its spot with the hope that soon everything would return to normal. We held on to hope that the morning would come when we would be making lunch, filling the water bottle and packing that backpack for the day. As the weeks and months went by and that hope diminished it was just too hard to unzip it and look inside. Too hard to be reminded of how life used to be. Too hard to be reminded of the times she would come bursting through the door with her backpack on anxiously awaiting to tell me the stories of her day at school.
Why I chose to open it today I don’t know. Going through it was as if time stood still. It was filled with untouched memories that no longer will be. Her bus pass, her gym ID and key, the money still in her wallet, her pink take home folder and her winter hat all crammed in just as she had left them three months ago.
It’s sad thinking about all of the memories that have been lost due to this pandemic. The community trips that always resulted in stories that made her laugh out loud, running to the bus stop in the rain, trying new foods and restaurants, riding the train into Boston, who fell of their chair in class, who did something to make the whole class laugh all ended. There were so many more memories to be made. So many new stories that will never be told.
Despite having to do school from home however, my daughter has made new memories that she never would have had if she were in her classroom at school. Although she has not been physically with her teachers and classmates these past few months she has in a sense gotten closer to them. Seeing your teachers and friends in their own homes everyday by video allows for different kinds of memories to be made. Memories of the day someone’s pet suddenly appeared on the screen, seeing a teacher’s child or spouse in the background, seeing a classmate in their pajamas, having a surprise visitor join in, or logging onto your computer and seeing photos of something a classmate or teacher did could only have been made during this time.
As for the backpack, I emptied it’s contents and made room for the day it will be used again. The day the lunch will be made, the water bottle filled and many new memories will be made.
One by one the birthday parade of cars came. The decorated cars, the sound of the beeping horns, the people waving as they passed by will long be remembered. Our village had arrived. Not even a global pandemic could stop them from coming to celebrate my daughter’s 22nd birthday.
When a person turns 22 they are no longer eligible for special education services through the school system. It’s still hard to believe that my daughter has reached this point. Never could I have imagined that this is how we would be celebrating her 22nd birthday. She was supposed to be beginning the next part of her journey into adult services and programs. Instead, due to the Covid-19 virus, the day was filled with birthday messages, videos and our village of people.
As I stood on the street and saw our village standing in front of my daughter I was somewhat overwhelmed. We have met so many people on this journey. To see so many of them standing there in front of her was amazing. When we started this journey oftentimes we felt alone. Today, 22 years later, we were anything but alone.
Year after year our village of teachers, therapists, family, friends, neighbors, and yes, even princesses have provided endless help, support, and encouragement. Year after year they have kept us moving forward even when we thought it wasn’t possible. Each of these people play such an important role in my daughter’s life. Together they make up the village that has transformed her into a beautiful young woman who has accomplished many things. There have been times we didn’t agree or understand one another but that didn’t stop them from continuing to care.
It seems that our world at the moment is all wrong. We are in the midst of a global pandemic and there is chaos in streets across the country. It appears that humanity is not existent anymore. But it is. Sometimes it’s hard to find the good when the focus is only on the bad. Despite it being May of 2020, a time that will most likely be recorded in history as a period of chaos and unrest, we will mark our daughter’s 22nd birthday as a day filled with kindness and love. A day our village came out to celebrate a special day for her. A day a group of people stood across the street to support someone else. We are blessed to have our village. We are even more blessed to know what kindness and a sense of community is.