Hanging By A Thread

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.

Faith, Hope And Pixie Dust

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.

Social Distancing

It has only been a week yet it seems like an eternity. Two weeks ago the words social distancing were two words I have never put together in a sentence before. Today those words are what we live by.

Right now we are all experiencing the same emotions. Disbelief, fear, and sadness fill our minds. Each of us regardless if we admit it or not are tired and on edge. Our lives, our routines have been changed and no one can give us an answer when we will be able to return to the normalcy that we complained so much about but we so much want back in our lives.

Although we are only one week into this new way of living, as a parent of a special needs child I have already learned a lot. First, my child is more resilient than I ever thought. No one more minute warnings that something is about to change, No more understanding of first this happens then that happens.Thats all gone away. The schedules and routines that she so much relied on to get from one day to the next have all gone away. Overnight a whole new schedule, a whole new routine was thrown my daughter’s way. She however, is adapting much better than I thought. I have learned that as long as there is a constant routine even if it’s different than what she is familiar with she can survive.

Second, I’ve learned that the teachers and staff my daughter interacts with every day are so much a part of her life and her world. Her whole world revolves around school and home. This is so true to all of our children whether typical or not. Our kids go to school, some participate in after school programs, and then they come home. My daughter, as well as many other students, would not have made it through the week without her teachers. There are not enough words to describe the impact our teachers have made on our kids this week. They are so much apart of their lives, our lives, and I hope now we can all fully realize just how important they are to our children. It is essential that they continue to remain actively involved in their lives as they make their way through this.

Third, I have learned that we all need human contact. Even though my daughter lacks many social graces and doesn’t need what we call “friends” in her life she still needs people. She desperately needs her village of people in her life. She needs contact, human touch, and support each and every day. “Friends” as we call them may not be important to her but the people in her support system are. Social distancing has been tremendously hard for her and something that she doesn’t fully understand. The need for human contact and touch is with us all regardless if we are neurotypical or not.

As we move into another week of social distancing since we can’t physically be together its so very important to stay connected with one another either online or by phone. We all need someone, our children included. Stay safe. Stay well. Stay connected.

The Coronavirus Detour

Talk about an unexpected stop on this journey, Coronavirus 2020 has left us in a very unfamiliar place. We’ve only just begun to travel along this detour and already we’re tired as heck.

The good thing is she is washing her hands. The bad thing is that she is getting up in the middle of the night to do it. My daughter is a worrier. What exactly do you tell your child that finds something to worry about during the best of circumstances when there is panic not only in her community but around the world? As much as we try to hide the news she finds out anyway. She knows people are getting sick from germs. She knows school has been cancelled. Events have been cancelled. She hears the shelves at some stores are being emptied. Most of us are able to put it all in a somewhat rational perspective but for those ridden with anxiety this is a hard thing to deal with. What makes it even harder is that we can’t give her an honest answer as to when it will all be over. The best we can do is keep reassuring her that it’s not forever and it will end.

Our children’s routines that get them through one day to the next have been suddenly stopped without warning. All that was predictable last week has now become unpredictable. The people and places they rely on are distanced. This is especially true of their teachers, therapists and school staff. Perhaps now we will all come to realize just how important our schools are to our children.

It’s time to set up new routines and ways of doing things. Our school district as well as many others is scrambling to put together meaningful routines that our kids can follow at home. This certainly has not been an easy task and they have been doing all that they can under the circumstances. They know just as we all do that routines are important to our kids. It’s now up to us all to be committed to these new routines.

This is especially going to be hard for our special needs community. Our children thrive on routines and changing them without warning is not easy. The road ahead is going to be challenging for us all. The days are going to be long and the many sleepless nights even longer.It’s important to reach out to one another now even more than before and know that you are not alone. Together we’ll get through this. We are warriors.

We’re Both Scared

Finally we have a program set up for our daughter when she turns 22 and ages out of the public school system. This part of our journey has been hard and frustrating. Oftentimes I felt as if I was drowning in an unknown sea. Every time we would come up with a plan a wave would come crashing over us and knock us down. Every time we thought we found the right program that met our daughter’s needs we were denied by the state because there was not enough funding to cover the cost. Finally after many months of grabbing my phone every time I heard a whoosh I got the email saying a program was approved.

Now what? Now comes the scary part. The papers have been signed and the plan is in place. Now the reality sets in. In 81 days my daughter’s life is going to be totally disrupted. She will no longer be a public school student on an IEP. She will no longer be picked up every morning and taken to the place she loves. Instead, she will become an adult in a day hab program.

She’s scared and I’m scared too. She’s scared because this is unfamiliar to her. All that is predictable and familiar is going away. Her comfort zone is about to be taken away. She is expected to be brave and do one of the hardest things she has ever done.

And me, I’m petrified. My biggest fear is that she’ll run. My daughter is not a runner but she has occasionally bolted when she was really scared. I can count the times she’s done it on one hand but that doesn’t make it less frightening. What if she does it now? What if she does it as an adult in an adult program? It’s a thought that never leaves me.

Our journey has been filled with many rough times along the way. Perhaps it’s just because it’s in the moment but this process of transitioning into adult services seems worse. Change is not easy and as difficult as this is going to be I know we will get through it. As scared as we are we will continue to keep moving forward on this journey one day at a time.

Front Row Seats

For years we would sit in the back far away from all of the action. I often wondered who those people were up front and admit sometimes I felt envious. When my daughter was younger she was unable to tolerate crowds and noisy places. When it came time for those school vacation things like the circus or Disney On Ice we were always the family sitting in the back.

Having two older brothers meant that Kelsey had no choice but to come along for the ride. While her brothers were enjoying the show Kelsey would be covering her ears, closing her eyes and squeezing my hand so hard that my knuckles would turn red. We spent more time in the bathroom than actually watching the show. Despite it being so very hard to go to these events we kept going year after year.

Eventually Kelsey’s older brothers lost interest and didn’t want to go anymore. Kelsey however saw this as routine and expects that we will go every year. The funny thing is that since we stuck with it and kept going as hard as it was year after year we were able to keep moving closer and closer up to the front row.

A few years ago we bought tickets to the 3rd row for Disney on Ice. It was a risk because we never sat that close before but the time was right. We had been going to the show for several years and Kelsey had become so much more comfortable in crowded places. Sitting up front really is a different experience. It’s louder, it’s brighter, the people are closer to you and you can feel the cold from the ice. Through the years however, she learned to use ear plugs and knows that my hand will be there to squeeze.

Those 3rd row seats turned out to be a success. There was no stopping this family now. Next year it was going to be front row seats. And yes it was! We the family that for so many years sat way up there in the back were sitting front and center in the front row. It was hard, it was frustrating, it was tiring, but we never gave up. The journey is hard but the destinations are amazing.

A Letter To My Daughter

Dear Kelsey,

Soon it will be time for you start a new amazing journey. In a few months you will be leaving school and starting a new program. It’s going to be very hard and scary for a while but I know in time you will be accomplishing great things and you will be as happy as you are today.

When you started high school and started going out in the community there were many things you had to learn to do. One of the first trips you took was to Ocean State Job Lot. You took the MBTA bus and were a little overwhelmed. The bus seemed so very big and it wasn’t easy to get on and off of. It even started to move before you were sitting down in a seat. You made it to the store and with your teacher’s help you bought two cans of soup. Kelsey I still have those two cans of soup. I kept one and took the label from the other one and put it in the locket that I have worn around my neck every day since. That day you took the bus was nerve racking. There were so many new tasks that you had to learn to do but you survived. You survived that day that was so new to you.

Look at you today. The bus isn’t so big and scary anymore. You even took it without a teacher the other week.You can go into a store now and buy something without your teacher’s help. Those things that were scary before don’t seem so overwhelming anymore.

Kelsey whenever you start to learn new things or go new places and are feeling scared and anxious I want you to remember those two cans of soup. With practice you can accomplish anything. Sometimes it takes a long time to learn new things but you have proven that you can do it. It’s okay to be scared and anxious but it’s not okay to give up. Where would you be if you gave up after that first bus ride and your trip to the store? It wasn’t easy but you did it.

I am so proud of you for all that you have done and can’t wait to see all the new and exciting things you are about to do.

Love Always,

Mom

The Last IEP

It’s here. The last IEP is here and taking up every thought I have. I knew it was going to happen, I just didn’t know how tired I’d be at this point. These past few months have been a journey in itself. The road to transition is not an easy one.

To be able to prepare my daughter for this next transition I had to prepare myself first. In the beginning I was full of fear. Fear of making wrong decisions, fear of leaving behind something that I have known for the last 17 years, fear of leaving behind the people that have become my support system, the people that have become my friends, family, and mentors. Suddenly I found myself leaving the place that I had learned so well to navigate and arriving at an unfamiliar destination that I knew little about.

Next came grief. When you’re in a good place and have to say goodbye, it’s sad. My thoughts are filled with all of the happy days. There have been many many days when my daughter came bursting through the door after school grinning from ear to ear and anxious to tell me about her day. There were many proud moments when goals were met, goals I never imagined could have ever been reached. My phone is filled with pictures sent from school. I have picture after picture of my happy daughter, my proud daughter, my silly daughter, my daughter doing amazing things. It’s strange but the bad days, the rough times are not on my mind. The days that brought so much anger and frustration don’t really matter now. Instead, it’s all of the good things that I remember and that is what makes it so hard to move on. I’ve cried many tears knowing it’s time to start saying goodbye.

Somewhere along the way however, I reached the point of acceptance. This IS going to happen, this WILL happen. My thoughts then are let’s MAKE it happen. There is so much more for my daughter to accomplish and do. There are so many more people to meet and places to see. In order to grow and thrive we all must take risks, our children included. My daughter is about to begin an exciting new adventure (okay, exciting but terrifying) and I’m ready to get her where she needs to go.

Now it’s time to let her in her own way reach the point of acceptance. She must accept that she will be transitioning into a new program and entering a whole new and very unfamiliar world. This may be her last IEP but it’s not the last of her incredible journey. It’s going to be a bumpy ride for some time but not forever. There will be much sadness and many tears along the way but there will be the day when her smile returns. When that day does happen she will be able to realize that she still has all that she left behind that day she sat at the conference table for her last IEP meeting and all that she has gained as she continues her journey. Every last leads to a new beginning and begin we will.

In The Clutches Of Transition

The road to transition has taken a hold on me this week. As this journey takes us farther down the road and closer to the day my daughter turns 22 I become more and more fearful. Afraid of the unknown. Afraid of not knowing what this next destination will hold for her and us as a family.

Transition, I have discovered, is not an easy thing. It’s like traveling to an unfamiliar country that you thought you knew about but once you got there you were totally lost. As our daughter got closer to turning 22 and aging out of public school we heard more and more about transition. It was always however just a word, it was never a reality.

And here we are today facing that reality. A reality for me but not yet for her. She still has no idea of what lies ahead. We are now at the point of the process of finalizing where her destination will be. Getting to this point has not been easy. As it becomes more final it gets more scary. We know the destination but little else. How she is going to get there, how long she’ll stay and what she’ll do when she’s there still has to be figured out. After all of that is done we then have to explain it to her.

Just how does one explain to their child that functions on all that is predictable that their world is about to change? This perhaps is what frightens me the most. Her world is about to be rocked and she won’t understand it until she actually goes through it. As a mother this is a hard thing to deal with.

I’m bracing myself for the rough road ahead. There is no doubt in my mind that eventually she’ll do fine and this transition will just be one more obstacle that we have made it past. Getting to that point however is going to be awful.

The transition process has been and continues to be an unsettling time along our journey with our daughter. The process forces us to keep moving ahead even though we are unprepared. Knowing that she is going to have to make an incredibly hard transition haunts me each and every day. Thoughts of not knowing where and when we’ll be able to stop and rest easy again have taken hold of me.

From Quirky To Autistic

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.