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.
Finally after all of these years she belongs. Since the time my daughter started kindergarten we could never find a program where she truly fit. Every program out there was either too high for her or too low. I often explain that when my daughter started school the special education classrooms were on one side of the hallway and the general education rooms were on the other. My daughter didn’t belong on either side, she was too high for one side and too low for the other side; she belonged somewhere in the middle. She was my “hallway” kid. Finally, at the age of 23, we’ve found a program for her, a program born out of the realization that there is a great need for those “hallway” kids, a program not too high, not too low, a program where she will finally fit in.
My daughter’s ability to speak is what I believe to be the greatest “criteria” that labels her “high functioning.” If it’s a topic that interests her, she can talk you under the table. It doesn’t matter if the information coming out of her mouth is credible or not, she can speak clearly, use whole sentences, and be very convincing. What you don’t notice at first sight however, are the hidden things, the things that move her to the other side of the hallway. The extreme struggle with transitions, the dire need for routines and predictability, the excessive amount of anxiety, and the struggle with the daily living skills that many of us take for granted.
As my daughter was getting close to turning 22 and that magic age when students become ineligible for special education services in the school system, we began looking for adult service programs she could transition to. Again we were faced with the realization that she really didn’t fit into any of the programs out there. They were either too high or too low. Eventually we compromised and decided on a program we thought would best suit her needs.
She never did get a chance to go to that program though. COVID decided that. With every program shut down she was forced to stay home. Nearly two years later she still remains home. My daughter is not the only one affected. There are hundreds of other young adults out there like her disrupted by COVID. Programs and services for her age group have been severely disrupted, more so than many realize. The extreme shortage of staff has caused a crisis for these folks. Two years is a long time to be at home.
That is about to change however, for my daughter, at least. She is about to become one of the lucky ones. Out of this COVID crisis a new type of post 22 program was created. Someone out there realized programs were needed for the “hallway kids” and they acted upon that realization to create a new type of program, a program not too high, not too low, but rather in the middle. Perhaps in the end we will be able to say the unexpected detour and long road COVID took us down led my daughter to the right destination. Finally, after all these years.
One of my favorite posts is “What If” published in Jan. 2019. There have been so many times during this journey that I have silently thought to myself what if. Once again today I find myself asking the same question.
Kelsey turned 22 in May of 2020. We had started planning her transition into adult services a year in advance. We had painstakingly planned every detail we could think of in order to make her transition less stressful. Never could we have ever imagined all of our carefully thought out plans would be destroyed by a global pandemic.
Covid 19 forever changed our journey. Kelsey has not physically stepped foot into a program in nearly two years. Most of our children were forced to spend a few months at home but have since been a long time back in their classrooms. The transition back into day programs for our post 22 children however has not been as easy. So many of our children still remain at home waiting for spaces in these programs to open.
I wonder to myself what if Covid never happened. What if she transitioned as we planned and her journey had never been abruptly stopped. What if she had been able to continue down the path we so carefully chose for her. What if she would have been happier.
Some what if’s I’ll never know the answers to, but some I’m sure about. What if Covid never happened and we didn’t get to spend some extra time snuggling on the couch every morning. What if Covid never happened and we didn’t get to spend lunch together every day with endless conversations talking about all the things she cares so deeply about. What if Covid never happened and we didn’t realize just how deeply she is connected to her home, her family, and her support circle.
Kelsey has been stopped at a roadblock for a very long time. The beginning was very hard. It’s not easy for any of us to be abruptly cut off from a familiar routine that we do every day. Over time though she has settled into a new routine at home, a routine that she now finds very predictable and comforting.
So here we are almost two years later. Two years after a transition that never happened, two years after a pandemic that rocked our world. Two years later we have finally found a new program for Kelsey, a new direction to take, a new road to follow. After being home for so long, the transition is going to be brutal. This is going to be one of the hardest roadblocks we have had to make our way around. I have to keep taking deep breath’s however and ask myself what if this was meant to be and what if this new journey is going to be amazing.
It’s been a while since my last post. It’s been a while since my daughter last stepped foot in a supported program. It’s been 17 months actually. The Covid-19 pandemic has left its mark on all the transition planning we had painstakingly planned.
My daughter officially aged out of the public school system in May of 2020. We had spent the year before planning for her transition into adult services. Transition is hard for most of us. For my daughter it’s a nightmare. We had anticipated the obstacles she would face and carefully planned how she could overcome them. Never could we have planned, however, that a global pandemic would cause all of our well laid out plans to be taken away.
Here we are 17 months later and my daughter remains in her room glued to her IPad. Adjusted to her new life and way of doing things she is happy to seldom leave the comfort and safety of her own house.
It’s been a while since we were in a world free from pandemics, masks, washing hands, grim news reports and closures. It’s been a while since we were free to go about our day not worrying about the world around us. It’s been a while since my daughter traveled the path she became to know so well.
A lot has happened to all of us these past 17 months. Spending a year and half at home has left it’s mark on all of us. Our lives have been disrupted and just as our daughter has changed, so too have we. The “perfect path” we thought we were traveling on is no longer taking us in the right direction. COVID-19 has left a huge detour along our journey. It’s not the first detour we’ve run into and it won’t be the last. We’ll eventually make our way around it.
My daughter has been at a standstill for a while now. It’s time to start moving again. Just as so many other families like us are finding out however, the adult programs for our children have been crushed by the COVID-19 pandemic. Just as everything was forced to shut down so too were they. Opening back up amidst guidelines, safety protocols, shortage of staff and long waiting lists has clearly not been an easy thing to do.
Seventeen months later and we wait. In the meantime we’ve taken things into our own hands and done something very special. COVID-19 has given us the time and determination to take a huge change of direction and make our own new path. Stay tuned for the next blog!
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.