An Unexpected Adventure

We were trying to remember our last vacation with RJC and we are fairly sure it was in 2019. Things have been dicey here with lots of yelling and obsessive behaviors and it so happens that circumstances changed, and we had the opportunity to get away for a few days. It seemed like a change of scenery was in order for all of us, even if it was only going to be for two nights.

The first issue was finding a place to stay. It was last minute, in the summer, so we were not sure we would be able to find any place with rooms available. We wanted to spend most of our time outdoors and we did not want to spend a huge amount of time in the car. Amazingly, we found a hotel just two hours away and the rooms had their own doors leading outside - so no walking through hotel lobbies. 

RJC was anxious about leaving but once she was settled in the car, stuffed animals in hand, we were on the road and she was happy to watch her DVDs. We stopped for lunch at a lovely spot on the water. It was a bit rainy, but we found an outdoor place with a covering. The employees were beyond accommodating so we were off to a decent start. RJC was a little anxious as she was so far out of her routine. We were worried that with the rainy forecast we would be unable to do much outdoors and since she refused to bring her iPad we were not sure how this short getaway would go (she only uses the iPad in our house, in a specific spot) but we were all in, so after lunch we continued on our way to the hotel.

We made it to the hotel, really enjoying the ride. The mountains were green and beautiful. The rain was annoying though luckily it was fairly light and not constant. We stopped at a farm which turned out to be...struggling. Still, we had the opportunity to walk a bit and we saw a few goats (oh my gosh, one of the baby goats was so adorable, trying to walk up a board and sliding down instead). We realized fairly quickly that there wasn't much here for us and RJC was fussing, so back in the car we went and headed to the hotel.

We were slightly disheartened, but we were able to adjust. It was rainy for about a day and a half, yet we found things to do and places to eat outdoors under cover or we brought food back to our room. The room itself had a nice deck and when it wasn't raining it was a lovely place to sit and relax. We had a visiting chipmunk who hung around for the two days we were there. RJC loves nature - sitting outdoors for her is relaxing and she is often more settled when we are outdoors. We were in a beautiful state - very green and plenty of open space. 

Many of the places we went were family-owned businesses rather than large chains. We went to a small mini golf place with an arcade and other than seeing one other family briefly, we were the only ones there. At that point it was still raining, so we only played in the arcade. RJC shot basketball hoops (she is quite good at this), played skee ball, and a few other games. Hal and I played air hockey (so much fun). None of us cared about the little prizes we could choose from, so we left our points there for the next family to use. We went to a "country store" that was huge! I am not a shopper - in fact, the thought of shopping makes me cringe - but this place was great fun and I could have spent hours there. RJC, however, was having none of it, and was getting loud and anxious so we left. We were able to play mini golf once the rain stopped.  For the record, I could have done without the snake that was hanging out in the water on the first hole - yes - an actual live, big, creepy snake. Of course, with our family, ice cream is a necessity and there were plenty of places to find it. The highlight of our visit though...The Chocolate Shoppe! Major score! 

RJC had some difficulty adjusting initially, but as the weather cleared so did her mood and she ended up seemingly more relaxed than when we first arrived. She slept fairly well though I am glad we were not in a big hotel as she was up sporadically (4 am, 5 am, 6 am...) and would get a bit loud for short periods of time. Luckily, we had an end unit and she and I did not sleep near the wall shared with our neighbors and since we never heard of any complaints, we assumed they were either heavy sleepers or we were far enough from their room that they didn't hear her. Phew. 

On the way home we stopped at the same place where we had lunch on our way to vacation. Once again, the employees were amazing, and we made a nice connection with a woman who worked in a local school as a paraprofessional. We chatted about our families and life in general and it was one of those moments where I was certain that we were meant to have these days for our family. Although it was a spur of the moment idea, it was also a necessity to get away, even for just a few days. We had been quite isolated for these last couple of years and though we did not actually interact with many people on a personal level, we saw people while we were out and about, we would nod, smile and wave. It was a nice reminder that we are still part of a bigger world even though our world at home had grown incredibly small. 

An unexpected adventure, well worth the time and effort!

The "What If" Rabbit Hole

6:15 AM or so:

RJC loves to help around the house. This morning she was emptying the dishwasher while I was in the next room. She came to me holding two pieces of a broken glass and said “Oops. Sorry Mommy.”

Luckily it seemed to be a clean break into two large pieces. I gently took it from her and explained that I needed to vacuum the kitchen and that we both needed to put on shoes.

She was not happy. She wanted to finish unloading the dishwasher. She could not grasp the danger of a possible piece of glass on the floor. She had a mission and she was not at all pleased that her mission was now being delayed.

I was patient and continued to gently lead her out of the kitchen, telling her to put on her shoes. At this point, trying to make her understand the danger issue was second to getting her out of a dangerous situation. Yelling all the way, she did as I asked while I took advantage of the time she was out of the kitchen and started to vacuum. Having been distracted by the shoes, she let me finish vacuuming then went back to her task of unloading the dishwasher.

It is sometimes a jarring reality for me to face the reality that at 30 years old she is toddler-like in her lack of abstract concepts (such as danger). Of course this sets me up for a swirl of concerning “what if” thoughts.

“WHAT IF she hadn’t told me she broke a glass.”

“WHAT IF I wasn’t here and she was with somebody else. Would she have shown them the broken glass?”

“What if something else happens today that puts her at risk?”

Etc etc and so forth (as the King of Siam would say).

So yes, my initial reaction was to go consider all the awful possibilities but I had meditated this morning and read a bit of Psalms so instead of going too far down the “What if” rabbit hole I decided to go someplace else:

All is well at this moment.

She did the best she could.

I did the best I could.

And now we can both move on with our day.

May we all be safe and avoid the “What if” rabbit hole.

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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.