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.
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.
This past weekend was marked by 22 year olds graduating from colleges across the country. Because of the current circumstances however, they were not able to walk across the stage and receive their diploma. Still the weekend was filled with celebration. There were virtual graduations from many colleges both near and far. Dignitaries, business leaders, politicians and celebrities all left words congratulating the class of 2020 and praising them of their accomplishments. And yes the Class of 2020 should be proud of all that they have accomplished and all that they will accomplish in the future.
My daughter is about to turn 22. Instead of graduating she will be “aging out”. This weekend found me at one of those moments when sadness unexpectedly crept in and played a mind game on me. There have been other times along this journey, especially as my daughter got older, when these same feelings crept in. Middle school when everyone else seemed to instinctively understand social graces and how to make friends, she struggled to figure it all out. There were several times too when my daughter was in high school that left me feeling uneasy. Every time I was in that building and watched the other girls walking in the hallway I realized how different she was.
Now that she is turning 22, instead of graduating she will be “aging out.” She won’t be receiving a diploma, donning a cap and gown and receiving messages of praise. Perhaps it’s just me and the funk I’m in but the words “aging out” suddenly don’t seem appropriate. They imply that your time is up here so you must leave. The word graduating however implies that you worked hard, accomplished all that was set forth of you and are earning something to prove it.
The saying, “Different, not less” is a very familiar phrase in the disability world. Those words ring so true at the moment. She is 22, different, but not less than any other 22 year old. She may not have spent hours cramming for exams or writing papers but she spent hours learning skills that were just as hard to accomplish. I feel as proud of my 22 year old child and her accomplishments as every other parent of a child graduating this year. Due to COVID – 19 and the current situation she will actually be continuing with her current program after she turns 22. When the time comes and she does age out her graduation will be different than those graduating college but it won’t be any less meaningful.
So here’s to ALL of the 22 year olds that already have or will graduate this year. You may have taken different routes to get to where you are today but with perseverance and hard work you succeeded. Congratulations!
It’s 4:30 in the afternoon and the day has already been long. Some days are good some days are not but even the good days seem long. I don’t know anymore what week number we’re into this. I do know that just as my daughter looks out the front window and says she wants to escape so do I. We all do.
My daughter’s emotions have been all over the place every day and different from one day to the next. She’s riding the Covid 19 rollercoaster and no sooner does she make it to the top of an uphill climb that she comes crashing down out of control. Her emotions go from happy and singing to herself to sheer panic.
Everyday at 4:30 however, the rollercoaster that she has been riding all day finally pulls into the station and she can get off and breath for a while. At 4:30 she connects with one of her teachers and it’s then that she can relax. Sometimes I can hear her talking from behind her closed bedroom door and I can tell she has a smile on her face. A smile that we tried to get all day but couldn’t.
It’s 4:30 in the afternoon and my daughter is checking in with someone from school. I know what it was like to make it this far through our day and I can assume their day wasn’t a picnic either. These are tiring times for us all. How they can muster the strength to connect with my child every day with a smile on their face amazes me.
It’s hard to imagine where we would be during this time without our teachers. Mr Rogers once told us during scary times look for the helpers. Teachers are our children’s helpers. They are providing much more than online learning. They are providing hope and reassurance. Our children would be lost without them.
As parents we would be lost without them too. As parents, as people, we are all dealing with this differently. I’ve heard some parents say they are completely overwhelmed with trying to keep up with all of the online meetings, therapies and assignments from school. I’ve also heard parents say they would not be able to make it through the day without all of those meetings and assignments. One thing we all have in common though is regardless if we are able to help our children get every assignment done or not we know our teachers will be there to support not only our children but our families as well. Teachers are our helpers.
This has been a strange time for all of us. In the years to come we will all have different memories and stories to tell. As for myself, 4:30 in the afternoon will always have a special meaning. It will be the time my child connected each day with a helper and smiled.
It’s 11:00 Thursday night and she calls out from her room, “I need new sheets.” I pull myself from the couch where I have sat with a beer and a blanket for the past 30 minutes trying to gain my sanity. I don’t know who is more stressed, her or me. As the weeks go by it gets much harder. You would think it would get easier as we try to adjust to this new lifestyle but it doesn’t. We can buy as many toys and puzzles from Amazon to try and sugar coat it but the pain can not be taken away.
The things that brought real pleasure are gone. She doesn’t giggle anymore. Oftentimes I would hear her giggling in her room or at the dinner table because she remembered something funny that happened at school. Her new routine is not like her old one. She doesn’t wake up excited about the day ahead of her. She doesn’t have stories to tell about her day anymore. Right now she is hanging on by a thread to move from one day to the next. This week in particular she is sad.
Feeling sad however is better than where we were before. Before this she was mad. Mad that everything she counted on was taken away. She was so angry she said she can’t live like this and wanted to die. No parent is ever prepared to hear those words come out of their child’s mouth.
So what do you do? Breathe in breathe out. Honestly my first instinct was I’m scared and need help. Fortunately we have a great support system that allowed me to put everything into perspective. My daughter is very angry. Angry that her whole life has been unexpectedly turned upside down. My daughter tells it like it is and when she says she wanted to die she really did. With that said however, would she ever harm herself no, not now. And as scary and nerve racking as all of this is I can’t help but think how far she has come to be able to express those feelings. We are the lucky ones. After years and years of all of those services she can express herself.
Taking it all into perspective though we have to understand what she is really telling us. She is struggling to get through this just as we all are. We can say that our kids are getting support and services everyday and all is wonderful. But it isn’t. Don’t misunderstand me, the services and support my child is getting are phenomenal and without them we would be in a true crisis state. Our schools, our teachers, our teams, our village are what is keeping us going. This “new” reality however is going to take a lot of time to get used to and it is going to be a long time until our children get back to where they were before. So it’s not all wonderful. Hanging on by a thread and barely making it through from one day to the next is not wonderful. It’s going to take a long time to get back to where we were before.
I’m not going to lie. This week has been a tough one. Our journey despite its unexpected detours and roadblocks has become more like a scary rollercoaster. The Covid 19 coaster is a ride no one wants to get on. Our journey is now filled with uphill climbs that suddenly take us spiraling down feeling out of control and unable to catch our breath.
All children and most adults do better with a consistent routine and predictability. To have that suddenly taken away is not easy for any of us. This has been especially hard for my daughter with ASD and anxiety. Her routines and being able to predict what the next day holds has been without warning taken away. We are all struggling right now. Some of us however are dealing with it better than others.
Along the way we have hit many roadblocks. This one though is like one we’ve never experienced before. None of us know what will happen next. What was once predictable to all of us is no longer. If we as adults are scared just imagine how our children feel. There are some days I ask myself how are we ever going to get through all of this. Then I start to listen to the voice of reason in my head and know we’ll get through because we have faith, hope and pixie dust on our side.
We are a family that is blessed to have an abundance of faith in our child’s school program. Through the years we have experienced a lot of programs. Some have worked, some haven’t. How fortunate we are now at this difficult time to be in the right program. The teachers and staff have gone above and beyond from day 1 of this crazy thing. Not only are they caring for their own families, they are caring for mine and many others. Kudos to you all for being there every single day. At a time when we all need each other’s help you have been a driving force for us. There are many things a teacher is called upon to do and this is something no teacher ever imagined having to do. You and teachers all across the country are doing it though and the lifelines that you are providing are what will keep us moving forward.
Along this journey we have established a village of people that have provided an endless amount of support. Family, friends, neighbors, doctors and our community have and continue to always be there. Each of us is in this together and hearing and reading all the messages of hope that you share makes it easier to get through one day to the next. Although we’re apart, together we are all hoping for the same thing. Keep sharing your messages and positive comments. They make a difference, you make a difference.
Faith, hope and pixie dust. We never could have imagined the difference a Disney Princess could make. To our village of princesses and the companies that you work for thank you for being creative and finding ways to reach out to our children. At a time when your businesses are struggling you continue to find ways to provide smiles and a calming presence to so many. You are such an important and special part of our village. Keep that pixie dust coming. Together we’ll fly our way through this.