Turning 30: Sometimes Ya Just Need a Party!

It has been a very busy time here as RJC just turned 30 years old. 

I truly cannot believe that time has gone by so quickly. This was an emotional event for me. Somehow, as long as she was still in her 20s it felt like we still had plenty of time to teach her things that would increase her independence and things she would need to know when we were not around to support her anymore. Somehow as the number 30 was getting closer, I was feeling more and more anxious as it seemed like she was about to step firmly into the category of "adulthood" and that my husband and I were clearly getting older as well - as proven by the additional medical tests and vaccinations ordered by the doctor ;) 

So, I had this idea that we needed a party to mark the occasion and flip my thinking to put a positive and joyful spin on this birthday. Initially, the thought of a party created even more anxiety. We usually celebrate with just our small, immediate family. We needed to think about it. Who were her friends? Would we be able to supervise a group when we had our hands full supervising RJC? What would she and her friends actually do at a party? We wanted it to be outdoors, so what would we do if it rains? On top of that, party planning is so far out of my wheelhouse that I knew it would create added anxiety instead of letting the joy in.

Talking it out, I realized that the majority of her time that she has spent with peers in these last two years has been with Friendship Circle - a Jewish organization that supports children and adults with special needs. They have been our lifeline. I gave them a call and explained what we were thinking and after checking to see if some staff could help us out both with being a planning resource and to help at the actual party, we had the green light and we were planning a party. I also checked to see when her Jewish birthday was this year (the Jewish calendar is different from the secular one) and we decided to plan her party on her Jewish birthday. Between a few conversations and many texts...a party was planned. 

We invited those who she had been seeing at events these last few years as she knew them well. We wanted them to feel comfortable and bring family members and/or others with them so they would have support if needed. Also, their parents are others who were part of their support network were our friends as we share our journeys with one another. We decided to have it in a space that all of the participants were familiar and comfortable with, and it could be moved indoors if necessary. I appreciated the support and guidance around how to do evites (I felt very techie), supplies needed, etc. We decided to keep the party to one hour so as not to overload our gal. My many questions were answered with patience and encouragement. Or course, RJC's sister was coming, and she was happy to help on the day of the party. It was all coming together.

The day of the party arrived and by then I had gotten past anxious and truly looking forward to it. We had hired her music therapist for a musical component (by far she is one of RJC's favorite people and music is a great love of hers), a face painting artist (or hand painting or whatever worked for the individual), had some sidewalk chalk available if anyone was so moved, as well as a big card that everyone could sign so she would have a keepsake. Being that this was her Jewish birthday we kept the tradition of giving tzedakah (charity) and supplied people with quarters for them to put in the tzedakah box. This was familiar to all of the participants since they had done this many times at Friendship Circle events. For me that was a highlight - to watch her walk around with her sister and offer people this opportunity to give tzedakah. It was suggested that we have somebody take pictures so that we could just enjoy the party and that was one of THE BEST ideas ever.  We asked a teen volunteer who was interested in photography to be our photographer and she did an amazing job. We had cake and plenty of water since we were outdoors and BOOM! A party was had! 

On the way home I cried a few happy tears. It was worth the effort to have found a way toward celebration and happiness as our gal was hitting her milestone birthday. Chatting with parents and other adults who were there for RJC was great fun, but by far, the best part of the party was watching RJC having a wonderful time in her "Happy Birthday To Me" shirt and her face painted like a cat. 

Practically speaking, we are planning to meet again with our lawyer who specializes in Special Needs Estate Planning again, to update a few things and try to better understand how to best be sure that RJC will be taken care of in the future. Emotionally speaking, I have mostly settled into the idea that times moves forward no matter how I feel about it, so I should jump on the opportunity to celebrate and be joyful. 

Sometimes ya just need a party!

No More Apologies,

I have had people say lots of kind, well meaning, and interesting things to me about our daughter. 

"I don't know how you do it."

"I could never..."

"She has only gotten this far because of you."

"You're a Saint."

I never know what to say in response to any of these so I usually stutter around for a "thank you" because I am well aware that what was said is offered as a compliment and I appreciate that.
But here is what I think in my head: 

You could do it because there is no option.

Never say never. My mom told me that many times, and though she never said it in this context, it is fitting.

She has gotten this far because of HER. Yes, we were helpful, as were her many teachers and various other professionals, our family members who have never wavered in offering encouragement and support, and our friends who have listened to me vent and cheered her on. Ultimately, though it has been all her - who she is - resilient, stubborn, loud, smart, determined.

I am no Saint. Not even close. I lose my mind some days. I do not sleep well and I struggle with anxiety, pretty much on a daily basis. I mutter under my breath, I vent to close friends, I cry and yell to my husband, and I have many days where I have doubts about what we are doing or should be doing.

Our everyday life is complicated for sure and like all families we trudge through and hope for the best. We have issues with the mundane, everyday events. Going places takes a great deal of planning, talking over the "ifs" - if this happens what should we do and if that happens what should we do. Illness and injuries, even small ones, are complicated. We are not always sure what the issue is when our gal does not feel well. We are not always sure how she has gotten hurt - we only see the result - a black and blue mark or an infection that has appeared. We are not always sure why she is yelling or hitting herself and we are definitely not always sure how to help. 

A few evenings ago we were having a "regular" evening. My husband and I were watching a show with the subtitles on because our gal was on her iPad listening to her videos on YouTube. Many years ago we made the choice to take the computer out of her room and give her an iPad so that she would hang out with us in the living room. We did not want her be isolated. Unfortunately, the headphone use was an issue over time and they because a tactile problem. We have tried just about every type of headphone but she is miserable. So this is how we adjust. Not ideal but it works for us. 

In any case, it was time to give her some meds and get her into the shower. That means stopping our show while I get up to get the meds, then stopping again to be sure she gets in the shower. Then stopping again to help brush and dry her hair. Each time I would come back to the couch, say "sorry" and we would continue watching. The third time I came back and said "sorry" my husband turned to me and said, "You know you never need to apologize for taking care of our daughter, right?" 

WHOA. That was a revelation. I had not even realized I was doing it. I thought about it for a bit and it occurred to me that I often apologize for our daughter in many different situations - or for our own actions concerning our daughter - and perhaps I should stop (well, unless she dumps water on somebody or is incredibly disruptive, both of which she has done). She is who she is. We are who we are. Our family is what it is because we have made carefully thought out choices and we do not need to apologize for those choices. For sure, easier said than done. It is a habit.

Just the other day I took her to get a manicure. First time in years. We went to a place we have never been before and I was definitely feeling nervous. I did call ahead and gave a general heads up but did not go into much detail - just said I was not sure how it would go. The woman did not sound at all concerned so off we went. There was a tv on and amazingly it had exactly the type of show she likes to watch - a nature show all about large animals in the wild. Then she started fussing. Loudly. "Take off my bra?" "Mommy will count to three and take off my bra?" "All done bra!" I answered as usual, "When we get home" and tried to get her to focus on the tv show but to no avail. Of course the other customers had no idea what the underlying issue was and there was literally no way they were not hearing her loud declarations (and to their great credit, nobody stared or glared either).  In the past I would apologize and share her autism diagnosis. This time I shrugged and made a blanket statement, "Not much in our home is a secret." That broke the ice and the other customers were quite good natured, even amused, commenting that they totally agreed with her.

It was an interesting experience. Nobody was upset, nobody asked questions, nobody stared or glared because of the constant and repetitive chatter. In fact, it was a way for me to connect RJC to the group - something I never considered.  It was a good start to the "no more apologies" approach! 

Why it took 29 years for me to get to this point...I have no idea. I am not sure this is going to be life changing in any significant way, but it does make me feel as though I am giving RJC a bit more dignity and respect for who she is. That is important to all of us as a family but mostly I feel that it is important for her. We always make the effort to keep her happy and keep her safe. Now we are finding a small way to simply let her be her. Seems like the right thing to do.

Snow Day

 RJC and I are stuck home today. She loves being on her iPad but we have found other things to do as well!

Baked challah. She braided both of them.

Exercised. We like the HASfit videos on YouTube. Today we tried a short low impact video. It is complicated for her because they are facing us. So when they put a foot back, she puts her foot forward. When they touch a foot to the side and bring it back to the middle, she takes a regular, full step to the side. Even when I tried standing in front of her so she could do what I do she was unable to follow. I tried a hands on approach, literally moving her feet (as best as I could) but the coordination just isn’t there. Doesn’t matter though. She is still moving so I’m taking it as a win!

Laundry - she put the first load in. I’ll have her move it to the dryer. She has always folded towels and recently she has been folding all of her own laundry and puts it away. Have to say she’s quite good at it!

Lunch - she independently prepares her own lunch at the beginning of the week for every day. She’ll get her own plates etc. as well. She likes Cheerios with cheese, 3 party cake muffins and crackers/pretzels with cheese. She’s also very good about cleaning up after herself!

Planning to do a few “connect the dots” later.

What are you up to today?

Flexibility For the Win!

We have been rolling along, still dealing with Covid times - masks and mostly avoiding indoor activities - with all the usual ups and downs and in-betweens. Some behaviors have been difficult - especially her yelling - it is quite grating. Still these times have definitely offered us the ability to work on her ability to be flexible when circumstances change.  

Personally, I find it is a bit odd, how "normal" this all feels now and I'm sad that we have all had to make adjustments and figure our way through these complicated times. However, the positive side to this for our family is that it has offered quite a few opportunities to practice flexibility and resilience. Clearly the vaccination and booster shot were a huge opportunity to develop both of those characteristics and it was a huge success (and very complicated as well - please see previous blog posts for more into). There have been other opportunities as well that probably would have gone unnoticed during different times.

One of the biggest wins in flexibility has been wearing a mask. It was a huge struggle at first. She would barely tolerate one for a few minutes. Now she is flexible about what mask she wears, the type of mask she wears (she recently was willing to wear a surgical mask instead of cloth one) and has even worn them for a longer period of time. It appears it has simply become her new normal. That is a huge step in flexibility!

For the most part we have a general routine and she is busy. RJC is still going to the farm a few days a week. She has music therapy on Zoom and goes to therapeutic horseback riding. We were recently at her first in-person indoor (masked) Friendship Circle event in a very long time. We are still seeing friends outdoors even in the colder weather. Sometimes we meet in our cars and other times we manage to bundle up and sit outdoors. We have taken a few walks up and down our street and we've enjoyed some nice rides looking at horses and cows, people and shops. She likes to comment on everything she sees which is a great opportunity for vocabulary building and working out grammatical issues. She and our cat have bonded. It has been fun to watch because this cat has been with us for something like 12 years and for most of those years, they had ignored one another. Now they are best buddies. They play string games and I've found them hanging out on our steps together, RJC petting the cat and the cat purring so loudly it's amusing. 

Some days she cannot go to the farm on her regularly scheduled day, (weather can definitely be a factor in the winter) so we choose a different day. There was a time that a change like that would send her into a frenzy. Now she easily adjusts. 

And just today we had a major win in flexibility.

Today is Valentine's Day. She loves to celebrate holidays and she plans ahead for them. Her plan for today was to make two heart-shaped cakes - one red and one purple and layer them. She wanted to white frosting between them, frosting on the top and decorate with icing. She bought everything ahead of time. Here is the snag. The heart pans we have are quite large and one cake mix would fill only one of the heart pans. I did not want her to make two cake mixes as it is difficult for her to control her portions. I also did not want to tell her ahead of time that it would not work as I know she would not understand the language, especially when she was so excited to do this. This would need to be a visual lesson. 

I decided to start out doing what she wanted - we cut the one cake batter in half and she used food coloring to make one bowl of red batter and the other bowl of purple batter. I let her put the red one in one pan and the purple in the other and she could clearly see that there was not enough batter for both pans. I was a bit worried about how this next conversation would go as I was telling her we could only make one cake. She looked at the two for a bit and tried to scrape more batter in to each one. She looked some more and then...there was an understanding. Best of all she was completely fine with it. She put the purple batter on top of the red batter and spread it all out into one heart pan. The flexibility she was showing had me astounded. It was definitely a checkmark in the win column! She happily decorated the cake then added the icing. I must tell you she did a lovely job!

Some days can feel incredibly frustrating. To counteract that, I do try to recognize the small moments that actually make a big difference. 

Flexibility for the win today! I will take it!

RJC's Covid Booster - Another Adventure

Last week, RJC received her Covid booster shot - but this time there were no special needs clinics we could go to and let's just say I am grateful we managed to get it done but holy cow - it wasn't easy. The truth is we need a public health system that takes everyone's needs into account, not only during a pandemic but all of the time.

If you haven't read about her first J&J vaccination yet, it would be helpful for you to go back and read the previous blog post. The shortened version is that about 4 1/2 months ago we were able to go to a vaccination clinic specifically set up for people with special needs. We received support from our state in that they provided us with staff skilled in physical management training, the atmosphere at the clinic was geared to help her. For example, only 1 appointment every hour was scheduled so we had privacy and did not feel rushed, they had a weighted blanket for her, videos that she enjoys on a large screen, stickers to play with, medical personnel were in street clothing etc. It was all organized by one person so all we needed to do was get her there.  

Fast forward to now. We found out from our doctor (and then I researched) that the "one and done" J&J was definitely not "one and done." At the six-month mark the efficacy rate was approximately 3%. Seriously. 3%. It meant that she would basically be walking around unvaccinated. I called the person who had been able to establish the special needs clinics and the funding was no longer available so we were on our own. 

It was disappointing and quite daunting. 

We needed to figure out where an appropriate place would be to get her vaccinated. Clearly, we were not about to walk into a CVS or Walgreens or any of the other public spaces where it could be crowded and her behavior could scare other people and/or be misinterpreted by other people (and in today's world of cell phones I would rather our family not be the next YouTube sensation). Another concern was that the person giving the vaccination would not have had any information ahead of time and possibly any training at all with her specific issues which would make for a dangerous situation for everyone involved. The space they reserve for vaccinations tends to be small and we would still be needing personnel support so this was a big concern as well.  We considered our local public health department and they were incredibly kind when I reached out to them but again, the potential for other people to be around and no specific training about RJC was a concern. It is always easier when people who have already been successful interacting with her are the ones who continue to interact with her. As a side note it is why we tend to visit the same stores/restaurants/entertainment spots etc. with her.

I still had the email of the doctor who vaccinated her the first time so I decided to email him and see if there was a way that he could accommodate her at his own clinic. He had already had a successful experience with our family and I was hoping he would be comfortable with taking us on again. He said he would and reminded me that we would need to bring staff with us. I knew then that he "got us." He understood the need for supports in order to keep everyone safe. I called the state and they were able to send the same two staff to support her that they had sent previously. I was so happy to know that the three people involved with getting her the booster shot were already familiar with her. Emails and texts went back and forth as we tried to find a date and time that could work for everyone. We did not go through the "regular" scheduling process that his clinic had. Instead, we directly communicated via email. I very much appreciated the amount of flexibility we were being given as trying to get a group of busy professionals available at the same time is a challenge. Eventually we settled on an early morning appointment.

We didn't tell RJC ahead of time. No sense in having her worry needlessly. That day my husband took the day off from work so we could do this together and support RJC as well as each other. We made sure to give her a short-sleeved shirt to wear. We went to the drive through bagel store, one of her favorite places.  We also have her a small amount of meds to hopefully help take the edge off. When she finished eating, we told her we were taking her to get a shot and that she would be able to see her friends again, Dr. X as well as Y and Z. We also told her she could pick out a cupcake at her favorite cupcake store. Amazingly she didn't respond in any way nor did she perseverate on the idea that she was about to get a shot. The ride to the clinic was quiet. My husband and I were shocked and guardedly thrilled. When we got there the staff went in to see what the space looked like. It was quite small. That was a concern. BUT the doctor and staff offered to come to our car and give her that shot there. We had a conversation about the pros and cons. We had been concerned about a few issues doing it in the car. Theoretically my quiet concern was if she would think that every time we went to the car she was getting a shot and would she then start refusing to get in the car? I put that thought aside as I figured if that was the case, we would offer her one of her favorite activities and that would most likely solve the problem.  I often overthink and I was able to put that concern aside. Practically we had bigger concerns - she would need to move her DVD player (that alone could potentially set her off) and the staff would need to get in the car with her to sit next to her (not sure how that would go) and we would have to get her to take her coat off and I would need to roll down the window to get the shot. Taking everything into account, and with the professionals leaving the final decision to us (which was so respectful and appreciated), we decided that the car was the better option in that it was safer and we felt we could work with the other issues if need be. 

Once again RJC shocked us all. She willingly took off her coat, put her DVD player on her lap and was fine with her "friend" sitting next to her. Once she was settled I opened the window and the Physician's Assistant dashed out, RJC closed her eyes and counted to three and quickly (and I mean super quickly) she got her vaccination and that was that. Everyone cheered, she got hugs and she was smiling so much! We thanked everyone a zillion times and we were just beyond shocked at how smoothly it went. We immediately went to her favorite cupcake store so she could choose her reward and all was well. We knew we had made the correct decision to take her to a place where they knew us and clearly understood our family and most importantly it was where they would be as flexible as necessary. 

I imagine that there are many families in need of booster shots who had previous success at the special needs clinic and now find themselves to be on their own. They may have a child who cannot tolerate crowds, or loud noises or lights, or who needs more physical space than the typical site offers, or who cannot stand in line and wait appropriately (we did all of our paperwork ahead of time in the privacy of my car) or who would be too worried to attempt this in a public space because they were unsure of their child's reaction to the situation.  They simply may not have the time to organize the visit as it is not a matter of simply signing up like the general public. They may need support personnel and not know how to go about getting that help.

We are beyond grateful that we were able to get this done for RJC in safe manner.  We are beyond grateful that we found a physician who was able to be flexible and non-judgmental and simply have the goal of getting RJC vaccinated one way or another. 

We are beyond grateful that our state was willing to provide us with trained personnel who were also flexible and communicated openly with us so we could make appropriate decisions for our gal.

Since then I was introduced via email to the person who is in charge of the vaccination program in our state and I shared our story in the hopes that we can start to make a difference for all of the families who need support in accessing appropriate health care for their loved ones - whatever that may look like. Not just now but post-pandemic as well, and not just for vaccinations but for whatever is needed - mental health support included. His reply was quite empathetic and appreciative of the effort we made to get this done and I took heart when reading his reply that this was an issue he will discuss with his team. If our country is going to be a leader in this world then we need to show we care about and make appropriate accommodations for everyone as necessary. This includes appropriate training for various personnel and sites that offer appropriate accommodations as needed. It will not be easy and it will not be a "quick fix" but it should be a long-term goal across our country.

This was exhausting - mentally and physically - but I will do this again and again if necessary. My girl's life matters just as much as anyone else's and she deserves access to health care that is appropriate for her. 

We can do this but we need to do this together. 

A Vaccinated Life - A Brief Update

It has been a while since I have updated the blog and about three months since RJC was vaccinated. The world is slowly opening up to her. We are still not an indoor with crowds sort of family and in general we prefer to be outdoors. RJC is very good with wearing her mask as at this point it has become routine for her, so going into stores for quick runs is now an option. 

By far, the biggest bonus of her being vaccinated is that she is back to going to the farm! She's there 3 days per week, for 5(ish) hours a day. It seems that for her it's as though she had not been away for a year and a half. I think it was very helpful that J, the person who she spends her time with on the farm, was in touch with her via mail during these many months. She fell right back into her general routine and now there are some added opportunities to her day - music therapy and therapeutic horseback riding. She is quite tired at the end of these farm days, often falling asleep on our living room couch by 8:30PM!

For me, it's been really nice to know that she is out and about, socializing with somebody other than me, her dad, or her sister. It gives her new opportunities for communication, adds variety to her day, lets her expend some energy while getting exercise, and allows for some independence. This is the perfect setting for her. Supervised independence while learning and practicing new useful tasks keeps her brain sharp and her body moving. What better way to spend time? There are tasks that are done over and over again and she enjoys the routine of doing them.

The other two weekdays we are still together. We take walks (we are up to 1.5 miles - an occasional 2 mile walk), we take car rides, we bake and do art, we have visits with friends (still mostly outdoors) and she helps me with household chores. She loves to organize our refrigerator and food items in the closet. A huge bonus is that we have noticed improved communication skills since the pandemic started. Her vocabulary has expanded and her comprehension is a better (though still tricky and we really need to focus on making sure we find ways to help her understand). The one factor that seems to make a difference is that she seems very willing, even eager at times, to make an effort to engage with us. One of the biggest accomplishments (which I'd say is still 50/50 and sometimes we are unsure if she is responding accurately) is being able to answer "why" questions. For example, sometimes she will just burst out laughing. In the past when we asked "Why are you laughing?" she'd automatically reply "I am laughing because I'm silly." Now when she replies that way we say, "Try again" so she will stop, think, and slowly say something like, "Because Tina went school drop book." Then I reply, "Oh no! Tina went to school and dropped her books!" Then RJC says, "Yes! Tina went to school and dropped her books! Silly!"  Of course it helps that I know she is talking about one of the characters from one of her Barney the Dinosaur videos. Still, with this general understanding of "why...because" she is now willing to try and communicate what she is thinking about and we can help her with her grammar. It's really amazing that we are here after 29 years. Amazing. 

This pandemic has been a bit of a mixed blessing for her, which I realize sounds ridiculous and perhaps even a bit sad.  But the reality is that she has adjusted to this new way of life which is of course very good because it is her reality, but also sad that she has given up even asking about many of her previously favorite activities. Perhaps it is the nature of her autism that makes it easy for her to be home, play on her iPad, obsess over her calendar, and enjoy hanging out with me, her dad, and her sister who comes by when she can. She does not ask to go to so many of the places she used to love. I do not remember the last time she asked to go to the Aquarium or to her favorite park. She does not appear to miss the Day Program she used to go to every day in the least. Maybe this has given us all an opportunity to rethink what she needs in her life and what makes her happy. Pre-Covid I felt like it was important for her to be with peers so we sent her to a program every day. While I do think that had its benefits (and practically speaking I was working at the time), I no longer feel like that it is necessarily a main goal (unless a really great opportunity was to present itself). I've always thought it was stressful for her to be with groups of people and I do believe without that daily stress she is more relaxed and happier. If I have learned anything in the last year and a half, I have learned to be open to change and go with the flow - because we never know what is to come.

I am so very grateful that we were able to get her vaccinated and open up her world a bit again. 

These are still crazy times for sure but I do feel as though our gal is a generally happy gal. 

And that makes me a happy mom. 

The Journey - Vaccinating RJC

I have been worrying about - and some may say obsessing - over how to get RJC vaccinated since before the vaccine was available. I knew early on that getting her vaccinated was important to us and not optional. Our history with our gal and vaccinations was not a positive one. In fact, it was quite the opposite. Even shots that they tried to give her the few times she had to go to the hospital for procedures were a "to do." I still remember the anesthesiologist watching my daughter running around in the pre-Op room saying to one of his coworkers, "If you think you have a problems, I have to find a way to knock that girl out." 

RJC has never tolerated shots of any kind. Actually she has never tolerated much of anything that was a "procedure." As a baby, as a toddler, as a young child and until her last required vaccine for school which I am guessing was around age 11 or 12, this was an issue. When she was very little we could easily hold her. When she was preschool/kindergarten age she went to a dentist who used to restrain her in a papoose board just for a cleaning. The last time we went to that dentist, she busted out of it - apparently unheard of - but when my gal is scared her adrenalin gets going and she is beyond strong. The last time she was vaccinated at the doctor's office around that 11,12 age I started out helping but had to leave the office because with all the body parts flailing I was more in the way than I was helpful. Eventually the doctor and nurses came out of the room (I was in the hallway and could hear the commotion and literally could see the wall shaking) and they were all sweating. My gal followed slowly behind, holding her arm and woefully singing "Nobody Knows the Troubles I've Seen" - a song she heard on a Wee Sing video. She didn't understand the words but she understood the sentiment. 

Interestingly, pain is not the issue for her. She has always had a very high threshold for pain. It appears that it is more of the idea of a shot. I received all sorts of advice and read all sorts of articles about what to do to make vaccinations less scary. All of the information was basically for toddlers and young children. Though RJC is preschool-like in many ways the big difference between her and an actual preschooler is her years of living. She has life experience. She's had shots as a child and even if the shot itself was not particularly painful the all around experience was not pleasant. She has also seen us getting shots and is very aware that the needle is sharp. She knows sharp things can hurt. So by default she has an understanding that shots can hurt. Added to that is her lack of receptive language and the difficulty she has in understanding abstract concepts. She has had no idea why, in these past 15 months, she has mostly been home with. No day program, no fun outings, not even a grocery store trip. Though she has adjusted and is generally happy that lack of fundamental understanding means we cannot tell her "Two weeks after this shot you can go to xyz because now you are more protected and can stay healthy." That means nothing to her. And really, to RJC, there is no reward large enough to warrant a shot.  

So that is her history which was making getting her this vaccination a very complicated issue.

We wanted RJC vaccinated, not only to help keep her safe from Covid but also so that she would be able to comfortably go back to being with peers, ideally to be back at the farm she loves as well as a possible Day Program. Of course we also wanted to feel more comfortable going back to the fun things she loved to do - go to the movies, eat out, visit the Zoo and the Aquarium, go to baseball games etc. 

I initially contacted our local Department of Health and spoke with a nurse who was very empathetic and truly wanted to help. I explained that I thought we would do best if she were vaccinated at home and with the J&J - one and done. We had a few conversations and at some point it became clear that the J&J was not going to be available. For me, this was pretty much a dead end. I could not imagine trying to do this twice. 

In the meantime we met with our Board Certified Behavior Analyst (BCBA) and as a team we decided to try to use a desensitization program to see if we could eliminate some of the aversive behaviors. In others words, help her tolerate a shot enough to get it done. As much as I wanted this to be a lifeskill forevermore, we did not have the time to do that. So the idea was to minimize the issues. We had a therapist come over to help with this, and both my husband and I were on board. We started with getting her used to seeing a syringe (the first time she  yelled and tried to throw it out) then we moved to her holding it and playing with it (water and paint - who knew there were fun things to do with a syringe) and eventually we were able to give her a pretend shot (turn your head, count to 3, as we held the pretend syringe with a pretend needle to her arm). We did this quite successfully over a period of time though it was obvious that she was well aware that mom and dad and her therapist don't give actual shots and she was clearly not in a doctor's office. But this was all we had to work with and her reaction was to no longer panic when faced with a syringe so that was positive.

At some point we knew it was time to give this a try. We saw that in our state, The CT Council on Developmental Disabilities created a partnership with The Town of Vernon, to help make vaccinations accessible to each individual. I called and emailed to get more information and received an incredibly quick response from the Director, Walt.  When we found out they were willing to send somebody to our home late at night, in the hopes that she would be sleeping, we decided that this may be the best option. Phone calls and messages went back and forth, and RJC's physician prescribed a sedative and a numbing cream. The doctor and EMT came over and we talked over the plan. Unfortunately she was not in a deep sleep so we ended up in our kitchen with me trying to reassure her and her literally pushing me away saying "No sharp!" It became obvious that it would not be safe for her or for the medical professionals to try to vaccinate her. Before leaving, the doctor mentioned that we should consider trying again and that it would probably be necessary to have PMT staff with her - staff trained in physical management. I could not even think at that point. I watched them leave and then I cried.

In the days that followed I really was feeling like this was an impossible task. I called Walt to let him know the vaccination attempt was not successful. He immediately offered whatever help he could for us to try again but admittedly I was not in a great place emotionally so I said I was going to take just a bit of time to think things through. He completely understood and reiterated that I could call any time.

About a week later I received a call from somebody from the town of Vernon to let us know that they were running another clinic. The doctor was the same one who came to our home as he was the medical director of their program. For me, that was a positive as I found him to be direct yet sensitive to RJC's needs and limitations. It so happened that I had also just read an article written by a mom who I knew. Our paths had crossed a few times as she is very active in the autism community and a strong advocate for her son. She had successfully had him vaccinated with PMT staff to support her son. I messaged her to get more information and we spoke further on the phone. She was reassuring and it was helpful for me to have the facts about how this could potentially work. Most importantly she demystified the concept of PMT.

It is not as though PMT was a completely new concept to me. My gal has had to be physically restrained in the past, both during her school years and as an adult. The difference is that it was never planned and I never saw it. I received the reports after the fact. The concept of planning to restrain her was new to me and I was hesitant. My husband and I talked it over and it became obvious to us that this was the only way to SAFELY get it done - safely for her and for those around her. 

The clinic is set up to produce success. Each individual's needs are discussed ahead of time. Individuals are given a one hour slot so there would be no rushing, no lines, no chaos. For a gal with sensory issues like ours, this is a huge bonus. Many messages went back and forth between me, our Caseworker, Walt at the Council, the woman coordinating the Vernon clinic, and the person who was helping us find the trained staff. The questions they had for me about the best environment for RJC were thoughtful and there was a great deal of reassurance offered. Did we think a therapy dog would be helpful? Videos? What would be fun for her that could possibly be a distraction?  How should we have the room set up? We had also heard that there were two PMT staff available to go with her. They each had many years of experience.

I am relieved and happy to share that four days ago our daughter was successfully vaccinated. Here's what happened:

We told RJC we were going to meet some new friends. When we got there, I went in first to meet everyone and see the set up of the room. It was just as I expected from our phone conversation. The medical people were in "street clothing" instead of scrubs. There was a large screen set up for her to watch a video. They brought stickers (which she loves) and a few other things to keep her distracted. There was a weighted blanket. I met the two staff who were very calm which was helpful to me. I saw the doctor again who reassured me that they were going to get this done and I met the woman who was organizing the clinics. Everyone seemed comfortable and unrushed. It was suggested that my husband and I did not need to be there if we preferred not to - and I took them up on that in a heartbeat. I honestly felt my jitters would make everyone less comfortable - especially RJC who definitely reads my moods. I went to the car to get my husband and RJC, introduced her to her "new friends" and watched as they went off together. Then we went down the hall to another room.

There were a few people in the room who I believe were there to help out with this program if needed. Looking back, I never asked many questions of them because I was too nervous, but we did chat a bit. I do not think we were waiting for more than ten minutes before we were told she had been successfully vaccinated. We zipped right out to her and she seemed fine but also confused. She was playing with the stickers. We quickly told her she did a great job, said a very quick thank you and whisked her off to her very favorite cupcake store. She seemed to be ok and was thrilled to choose her favorite cupcake.

The next day I did get a few more details when one of the staff who helped her gave us a call to see how she was dong. I was amazed and truly thrilled to hear that not only did she not resist much, but that when she saw the shot coming she said "1-2-3, 1-2-3" which is what we had taught her through the desensitization process. So somehow that stayed with her which gives me hope that she will one day be able to tolerate a vaccination independently. Not sure right now how to make that happen but I will be looking into it. It will be a long haul for sure.

She hasn't said much about the whole experience and so far she is a bit red around the injection area but she has not complained once nor has she obsessed over the issue. I expected to hear "No more shots" or something like that for months to come, but she's said nothing. We have told her a few times, "You did a good job with your shot" in the hopes that we can desensitize her to the word "shot" (which usually gets her screaming). 

In summary, this was an excellent experience - not traumatizing for her and a huge relief for me and her dad. 

This was tough to write and honestly it's still an emotional issue for me. I cannot believe how lucky we are to live in a state where my daughter matters enough for people to come together and help our family. We are beyond grateful and I would encourage anyone in CT to look into this. 

I chose to share this very personal experience because:

• I hope it may help a family struggling with this same issue. I encourage them to reach out to the Council. 
• I hope that people will have a clearer understanding of the hurdles our brave and resilient gal overcame in order to get vaccinated.
• I hope that other states will consider this type of program. Everyone who wants to be vaccinated should be able to be vaccinated safely and in a supportive environment.
• Most importantly - we are very very proud of her.