Sunday, March 11, 2018

RJC and "A Night to Shine"

When I heard about "A Night to Shine" I was skeptical. I had received an email from a friend who thought this would be something RJC may enjoy. It is an evening sponsored by The Tim Tebow Foundation when churches all over the world sponsor "Proms" for adults with special needs. One of the churches was in our area so I reached out to the Colonial Point Christian Church and found the information. I gave it some thought, talked to my husband about it, and while I had many reasons to hesitate I decided to go ahead and sign her up, then panic later as needed.  

The day of the Prom, I realize she really has no fancy dress to wear. About an hour before I need to be getting her ready, I dash in to a store, find a sparkly shirt that won't be itchy and lend her my long black skirt to wear. Luckily she does have shoes that aren't sneakers and happen to be black, so we are set there. We tell her she's going to a dance, and while I can't say she was overly excited, she was certainly quite willing to get in the car. It's an incredibly cold evening (this is mid-February in New England, after all) and when we go to park there are many cars already in the parking lot so we have a bit of a hike. When we get inside, it's packed. I turn to my husband and whisper "I give this about twenty minutes." Honestly, I was adding ten minutes to that number just to sound mildly optimistic.

There are smiling people at the door, and they show us where to sign in. Everyone is saying hi to us and it looks like they are well organized. I like an organized event, especially when it has to with RJC. Everyone is quite dressed up. Some prom goers are in tuxes and suits, some are in long gowns and fancy dresses. I feel a bit bad that I didn't put more time into the clothing issue but I still thought she looked adorable.  They offer to take her to do her hair and makeup but I'm feeling somewhat sure that that's not going to go over well so we skip it. I peek in and see some of the girls are enjoying that, and next door some boys are getting their shoes shined. We sign in RJC and they take us to meet her escort for the evening.

We meet her escort, (I'll call him "Tom" for purposes of this blog) who is a bit older than some of the other escorts I had seen. I find this reassuring. Tom introduces himself to all of us and takes me aside a bit and tells me he read the information I had sent in, then asks if there is anything else he should know. Are there phrases to use or does noise bother her? I am reassured again. I like when people ask me relevant questions about her. We chat a bit and he zips off to get her some water. I look around and take in what I can see. There is a DJ and people are dancing, there is karaoke and I see a photo booth. I've been told there are limo rides available. Tom comes back and I can't think of any reason to stall. They head into the event and we watch as they walk together down a red carpet. There are people on each side, and instead of clapping as we saw for previous guests, they are quietly waving. GENIUS! Reassurance once again that whatever training they did, Tom was surely listening. My husband and I can't see them anymore so we head to the area for parents and caretakers, two floors up. I glance at my watch and mentally assume we will have time for a quick snack before she will want us to take her home. I am already planning my apology to Tom. 

There are a few friends there and we say hi, get some refreshments and find a quiet room to chat. It's really quite nice. Time is ticking - no RJC - no Tom running to find us. I'm chatting with friends but constantly looking at my watch and paying attention to the sound of the elevator. Finally, one of my friends is going downstairs to have a look around and find her son to see how he's doing so I ask if she will look for RJC and let me know what's going on. I know that if she sees me she will want to leave - even if she is enjoying herself. A little while later my friend returns with pictures of a very content RJC and Tom.

I'm feeling a bit better about things now. We continue relaxing and chatting and though I'm still looking at my watch it is more in complete wonder than in panic. Finally, almost three hours later, it is time to go downstairs as the prom will be wrapping up.

We head down and there is still quite a crowd partying on the dance floor. But no RJC. We move on to the karaoke area and there is somebody singing. But no RJC. We go to the photo booth area and there is still a small line for people who want to get their pictures taken. But no RJC.

Hmmm. We ask a few volunteers if they know where we can find her. They point us back to the areas where we had just looked. I am getting concerned now. I ask a volunteer if there are other areas and she tells me there is a sensory room for anyone who needed a break. BINGO. We open the door and there she is, her feet on the arm of the chair playing with a fidget and sitting contentedly with Tom and two younger female volunteers. She is in no rush to leave and is, in fact, quite comfy. Tom tells us it was a low key evening for her and that she enjoyed herself. She didn't want to go out in the cold for the limo ride (she really doesn't know what a limo is and it was seriously, no kidding, cold that evening). She had on a tiara - because every participant was crowned the "King and Queen" of the prom. There were pictures of them from the photo booth and again, credit goes to Tom for helping her participate in everything. There had been no problems. She had snacks, she was happy, and on the way out she received a "goody bag." She looked exhausted which was no surprise since three hours anyplace is taxing for her but especially a new place with new people.

We got in the car to head home and from the back seat she says, "Thank you for the dance. It was fun." Mighty strong words for RJC. She only uses that script when she means it.

I am always so grateful to find activities for her that are age appropriate but also take the developmental issue into account. I am also so grateful when I come across an organization that thinks about my gal and her peers and truly work to add to the quality of their lives. This was a night that was truly about the participants and making them feel special. There was nothing asked in return. It was from the heart. I truly believe that this philosophy, this feeling of "you are special" created that evening, is why RJC did so well. This was an evening of fun and respecting the whole person for who they are. She may not understand the details but she is an excellent judge of authenticity.
A new experience. This really was a night to shine.

Sunday, December 31, 2017

CLOSING 2017 (from an autism perspective)

It has been some months since I have posted. I get into moods where I do not really want to think about autism. This mood lasted a while longer than others.  In any case, I think a look back and a look forward is always worth taking the time for so here it is.

Whoosh. That is how quickly 2017 went by! I am not sure anything major has occurred in terms of RJC and autism. Many small things for sure. We still have the big question of "what next" looming and to be honest, I am not sure that will be solved in 2018 either.

What I will say is that a big part of 2017 was watching our gal mature. Yes, she is still light years behind her peers developmentally and that will simply always be the case. Her personal growth, however, has continued. Her language is considerably better - her vocabulary as well as her grammar. This results in less frustration and more social connection. She is doing much less screaming, only went through our wall one time this year, and generally seems more settled.  All of this means that Hal and I have had more time to spend together enjoying an occasional movie or dinner out. I even travelled to Canada TWICE! I know! Who would have thought...??? 

Challenges continue because, well, autism. Here are just a few of our issues:

1. She needs 24/7 supervision as the concept of safety is just not there. If there were to be a fire, the electricity goes out, some creeper trying to get in our house, an important call that needed to be answered, we could not count on her to know what to do.

2. Her eating habits are a humungous challenge and though we were able to wean her off some of the more processed foods that were full of sugar, salt, and empty calories, we have not found much to replace it with. Her diet is mostly bagels or cheerios with an occasional strawberry or carrot accompanied by water or lemonade. Very limited. Makes me crazy.

3. She is obsessed with the calendar and likes to "test" us on what is happening on what day. I often fail. I do not have the memory that she has so when she asks "What day in 2018 are we going to the (fill in the blank) I will often get it wrong. Much to her frustration. She needs to repeat these conversations literally multiple times a day. Could be up to 50. No exaggeration.  It is important that we stick to the script so if we get it wrong - back to the beginning.

Actually general obsessive behavior abounds. Needs to bring specific food and videos when we visit the grandparents, needs specific DVDs for various car trips, needs to have the refrigerator organized a certain way, etc.

4. Clothing tends to be tossed out on a regular basis because it is ripped. It is ripped because there is some tiny string that was making her crazy and she pulls at it or cuts it until the actual clothing rips. Once there is the smallest hole she will no longer wear that piece of clothing and it is trashed. It gets pricey and she often wants to replace that piece of clothing with the EXACT SAME piece of clothing - a challenge in and of itself.

5. Yelling occurs for no reason that we can see. This does not mean there is actually no reason. It just means that we missed what set her off. This also means that there is little we can do to help other than hope it passes quickly. Sometimes it does. Other times, not so much.

6. She is still unable to express important things consistently.  If we ask what she did during the day she may answer accurately or not at all accurately or not at all. We still take guesses as to how she feels physically. At one point she came home with an awful, huge bruise that has been taking a very long time to heal. She did not talk about it, simply covered it with a zillion bandaids. Luckily the program gave us an idea of what happened. Still, it took a while to get a thorough picture of the incident since she was unable to share. Always makes me wonder what else we should know that has happened to her during the day but that she cannot share.

The list goes on but really - it's autism - which is such a complicated, all encompassing aspect for all of us who are close to RJC. It affects our marriage, our friendships, our general outlook toward life. Not necessarily in a negative way but not necessarily in a positive way. Just in its own autism sort of way. It is an "is."

What is my hope for 2018 and autism? Same as always. That we find a way to give her the best of us and that we find a way to keep her safe and happy - not just in the present but in the future. That she continues to grow and gain skills that will help her communicate and socialize with the world at large.

A happy 2018 to all of you. Thank you for being here and supporting our family as we continue our adventure.

Saturday, August 5, 2017

Two Weeks

Well these two weeks just flew by!

When I started this blog, I told myself it was important to always be honest. No matter how it made me look to other people.  I write this blog mostly for myself since I find that as I type it helps me to sort out how I truly feel.  I also write for those who have children on the autism spectrum to hopefully feel just a bit less alone and isolated. Finally, I write for those who do not have a child on the spectrum to understand my gal and my family because it's important for her future that people are not afraid of her. I want the world to embrace her for who she is. Honesty is the only way that these goals can be met.

So confession:  When RJC went to overnight camp this summer, I was more excited than nervous. I needed a break. This year was the first time I ever admitted that to myself and even to some close friends. With things being so precarious with the State and Federal budget (which will have a HUGE affect on our lives) and the general emotional exhaustion of always being "on" when RJC is awake and the added fact that I'm getting older and tire more easily, I needed some time for just my hubby and me.

In the past few years that she has gone to camp, we took a mini vacation someplace fairly close by - perhaps a few hours by car. This year we both took off two weeks and flew out of state to spend time with family and a few days by ourselves. We were only gone 8 days, but it felt like longer. Coming home, we gave ourselves a few days to catch up on laundry and cleaning and just generally get organized before we picked up RJC. 

This morning was the day for pick up. I woke up feeling incredibly nervous and anxious about it. Not in a good way. I was worried about how the homecoming would go, as we made a few changes which may not go over well. For example, we decided we would insist that she use headphones when on her iPad, and we moved a bunch of her stuff that she liked to keep in the middle of our counter into a "special RJC drawer." None of this may sound particularly drastic, but believe me, it was. I wondered if I would lose a wall or end up black and blue from pinches. My stomach was letting me know that tension and stress was setting in. We hadn't even left the house yet to pick her up.

I was also sad that I was losing my time with my husband. For the last two weeks we were pretty much inseparable and I loved every minute of it. Yes, I do believe we will eventually (G-d willing) "do" retirement just fine! We slept a bit later, took naps when we wanted to, went out to eat without worry, did lots of sightseeing, had adult conversations with others that were uninterrupted, and had many conversations between us that solidified our union.  I couldn't help waking up and feeling sad today - even resentful - that this time was no longer a regular part of our day.

Here's the interesting part though. We went to pick up our gal and the second I saw her and she said, "Mommy! You're back!" I melted - heart and soul. I didn't think of what I was losing. I immediately kicked into mom mode and it felt right. Hugging my gal and forehead to forehead, we reconnected immediately.

I don't feel guilty about how I was feeling. Parenting an adult who is a child for the rest of her life brings forth all sorts of complications - not just logistical but emotional. In the past I would have felt embarrassed, even ashamed to admit how I was feeling. No longer. I am not a perfect parent. I am no supermom. I am just one of many warrior mamas getting through the day, protecting my family, and living life the best way I know how. Some days will be easier than others - just like everyone else's lives.

Here's the best part! She has been all smiles since she has come home. Took a bit of adjusting to the headphones and the new RJC drawer but I am currently sitting across from her, watching her use the headphones and giggle to the videos she is happily watching. 

As a side note, hubby and I have talked about the importance of spending time together. We are hoping to somehow carve out more time for ourselves this year to do some fun things together (instead of always dashing to do some errand while somebody is with our gal). I also explained to him that my girlfriends are incredibly important to me and I need some "lady time." He said that he needs time to do his own things as well so hopefully we will find some type of balance. Though we did not mean to lose ourselves as individuals or as a couple, we are attempting to get back on track. Of course, RJC is an absolute priority and we will be sure that she is happy with what she is doing while we are doing our own things. No doubt, time with her sister will be at the head of that list as well as time with others who care deeply for her.

I'd say these two weeks were two weeks of growth for the entire family. Separation has brought us closer. To those who have a difficult time  of letting go - please reach out to me. I can share my journey in more detail.  Indeed, it has been a journey. One I took too long to embark on. Trust me, I understand.

Two weeks. Ready for the rest of our lives.

Thursday, June 15, 2017

RJC is a Quarter of a Century Years Old

Four days ago, our oldest gal turned 25 years old. That seems so crazy. I do not know where the time goes. Days go so fast now, weeks fly by, and the years are zooming.

This year I have had mixed feelings about her birthday. Here's the struggle that has been going on in my old brain.

My mom isn't here anymore to celebrate and she was her biggest fan who loved celebrating.  RJC doesn't have a FB page or any social media page and she doesn't have a cell phone so nobody can call her or leave her fun memes or messages. I feel like she is cheated on her birthday.  There is never a big fuss. No endless talk of presents (she really doesn't care a bit about presents) and though Grandma and Grandpa always call, that's pretty much the extent of it.

I tend to especially struggle with milestone birthdays that she has, mostly because no matter how incredible she is (and she is VERY incredible) or how hard she works to get through a day (and she works VERY hard) she will never be developmentally the same age as she is chronologically. She isn't driving, she has never been in love, never went to college, never held a full time job or a part-time job for that matter. She has never been to a party with a bunch of friends that she hangs out with all the time, never had a best friend, never joked around with friends and laughed until she cried.

Every time I think I'm ok, I see somebody her age doing something age appropriate and I feel a pang of loss - for her as well as for me and Hal. We aren't going to be throwing a graduation party, we aren't going to watch her find her place in the world in terms of becoming an independent adult, and we aren't going to look at her children and think how much they look like her when she was born.

BUT. There is another side to this.

Now that a few days have passed and THE DAY is over, I feel like I can breathe again. She doesn't have a concept of what a birthday actually is. As usual, we were at the Special Olympic State Games for her actual birthday and that is always just such fun. We celebrated with the team and they loved celebrating with her. She WAS with friends. Friends in her world. People who see her for who she is and give not one thought about her being "different." People who may get annoyed with the self talk and loud screaming, but don't stare or wonder what's going on. They just express annoyance and move on, knowing that she is who she is. As per family tradition, we went out for dinner and they sang their happy birthday song to her and brought her oreos and gummy bears. Made her day.

Once again, I learn from RJC. That just because her birthday experience is different, it is uniquely hers. She is content with the way we celebrate and she has no unfulfilled expectations. She does not get upset that somebody "forgot" her. She doesn't care about presents in the least. She is beyond thrilled when a card shows up for her because she thinks getting mail is one of the coolest things ever. As is often the case, RJC reminds us of what is important. That it does not matter what she can't do or can't have. What matters is that she is the authentic RJC. Autism does not define her. It just...supplements her.

So I'm over my latest struggle and while I am quite sure there are more on the horizon, I am back to getting through our day to day stuff. Her Medicaid renewal just came - that'll be fun, I'm sure. So did our Guardianship Renewal forms (those three years went pretty darn quickly). Right now I can hear her happily singing Barney songs in English then playing them in Spanish. She's happy. She's safe. She's loved.

Happy 25th RJC. Love you to pieces.

Saturday, May 6, 2017

Guest Blogger!!! Guest Blogger!!!

Last year Hal and I met a college student who was volunteering in a program called "Challah for Hunger" through Friendship Circle Hartford. We noticed that she and RJC made a nice connection and at the end of the program we asked Michelle if she would like to work with RJC when she returned to school the following semester. Lucky for us she said "yes" and this year has been working with RJC as a friend and mentor, taking her places and helping her to socialize.

Michelle was recently awarded a scholarship - full tuition at University of Hartford - that recognizes her commitment to community. To win this scholarship, she was required to write an essay that focused on one policy in no more than 500 words and submit that essay along with three recommendations. She chose to write on one that is dear to my heart. She was then chosen as one of four finalists and was asked back for an interview by a panel to answer questions about what she had written. On Friday, she was told that she was chosen as the scholarship winner.  I have asked her if I can share it and she graciously allowed me to post it here.

Please note: I had given her permission to use our gal's name in the essay, but have changed it here to RJC as this is how we refer to her in my blogs.

Here it is:

Autism and DDS Eligibility
With infinite combinations for personalities, circumstances, and cultures, all people must be provided a set of default rights. Independence must be dispensed fairly; it is unjust to make the abstract, or unmeasurable qualities of people the foundation for opportunity and freedom. The society that a person with autism finds themselves in bases their rights on the most subjective of traits; their level of intelligence is the key to available learning services and financial support. The irony of this policy is detrimental to lives of people with special needs and their families. Their biologically altered level of intellectual functioning is ultimately what may obstruct them from building upon their ability to function as members of society.
DDS, the Connecticut Department of Developmental Services, provides support for citizens with intellectual disabilities. In addition to being a resident in the state of Connecticut, the policy states that a person must have a “valid Full Scale IQ score of 69 or below.” The DDS procedure for confirming eligibility does not involve a sit down interview with the applicant, nor do they examine the home and family the applicant belongs to. The precious funding for day programs, financial support, and at home assistance for a person with an intellectual disability hangs by a fragile thread; within an instant, a meager test result is capable of rupturing valuable services.
I have been offered the opportunity to work one on one with an adult who is diagnosed with autism through DDS. Twice a week, I leave campus to pick up RJC from her home fifteen minutes from the University of Hartford. My job is to offer myself as a relaxed, sincere friend to RJC, and help her become comfortable with the concept of making connections with people outside of her family. In the pursuit of helping RJC view places beyond her home as bright and meaningful, we approach the world as our playground. Together, we go bowling without bumpers, order our favorite sandwiches at Panera Bread, braid Challah breads, and simulate trips to the moon at the Connecticut Science Center. We have successfully formed a judgement-free friendship. She has reached a new place of mutuality and trust in me, someone who was once a stranger.
The Full Scale IQ test does not measure the level at which a person functions. Some adults with autism can score high on the test; however, their skills and ability to carry out everyday tasks are limited. When it came time for RJC to take her IQ test as proof of her eligibility to receive DDS services, she received a score of 69. Had she scored one point higher, a 70, my presence in her life would have remained nonexistent. The services she and her family are provided allow for RJC to gain her right to function, and continue to build upon her growing abilities.
The basis upon which people with special needs are chosen to receive state aid must be re-examined. To fully express the right to be a functional citizen, DDS expects applicants to show that they are not intellectually capable. It is absurd to make one irrelevant test of intelligence the deciding factor in providing services that could enhance the quality of a life.
Thank you so much Michelle, for the friendship you have with RJC and for your caring and thoughtful ways.  Maybe young people like you will be able to change the world's view of our kiddos. And just maybe that will help the world recognize that they are important enough to deserve the support they need.

Thursday, March 23, 2017

The Depressing Reality

This post is about the depressing reality of our lives. We are parents of two children, one typical adult and one adult diagnosed with autism. This post has been rolling around in my brain for a while, and just about every day either a conversation I've had with a friend, an article I've read, or an experience I've had, adds to what I would want to share in this post. Before it becomes a novel I have decided to get this down in writing.

It all started a while ago, when I saw an autism mom's video. She talked about a lot of things, but what has haunted me was when she talked about her worry about who will be at her son's funeral. I do not believe she meant to be morbid, nor do I, as I am writing about this. It's just one of those awful facts of life that if the circle of life goes as normally expected, we will be dead before our girls.

It so happens that my girls have no first cousins. We are also a family quite spread out across the country, so we don't see extended family often. In the case of my "typical child" this is not such a big deal. She can keep up on social media, if necessary she can pick up the phone (gasp) and at family functions she can chat and catch up with everyone. She has an understanding of the concept of family. Not so in the case of our RJC. Though we have been blessed with a family who is concerned about her and loves her, she is not necessarily as familiar with them. Those who are closest to me are in my general age bracket and therefore the chances of them being around longer than's the same circle of life issue.

So other than her sister and hopefully whatever family her sister has, who will be at her funeral? Will there by anyone except perhaps her sister, the Rabbi, and any people he can gather up to be there - possibly strangers. Not only that, but will anyone be around to miss her, other than her sister? Who will she be important enough to that they will take time out of their day to be with her when she dies and when she is buried. Talk about incredibly depressing.

I then think of her aging process. I'm in my mid-fifties and I've started to have my share of health annoyances and scares. She cannot possibly understand how to truly take care of herself and monitor her body's changes. At this point, even I am often guessing how she feels. It's one of my major autism hates - the fact that I really do not know with complete certainty if she is feeling ok. Nevertheless, I am absolutely on top of that. I check in at various times to see that she has no new scrapes or marks, doesn't seem to have a fever, isn't congested, etc. When she is older and I'm not around, what will happen if she has aches and pains but no way to share that information with her caretaker? Or what if her doctor does not think her life is worth fighting for? Or if the medical insurance company does not think her life is worth fighting for? And if there is some type of treatment she needs to go through, who will be there with her? How will she handle the discomfort/pain of a treatment without understanding that it's supposed to help her?

Then comes the pain of knowing that once I'm gone she will not have any understanding of where I am. Will she think I just left her? Will she worry that she did something wrong so I left? Will she wonder if I'm coming back? The concept of "death" is just not one I can explain. She will sometimes ask for her Grandma or her Uncle and I say, "Where are they?" and she will reply "Dead." But it has no meaning, obviously, since she still asks where they are. She probably assumes "Dead" is a state like "Florida" or "Texas."

All of this is incredibly heartbreaking to me. Then on top of this is the worry about finances. She is not going to make a living that will support her. Ever. This means that she will not receive health insurance through a job. Once we die (or stop working) then all of her health insurance will need to be from the government. So she becomes one of "those people" who are "living off the state." Well yes. What does that mean? That I shouldn't have had this beautiful soul because once I'm gone she becomes a "burden" to those who cannot fathom her value? Should we have had another child or two so that they could help her sister take care of her? Not like we didn't think about that - but we also realized we could have another child and that child would need care as well. It was not a risk we were willing to take.  Maybe we made the wrong decision. But maybe not.

So when I try to sleep at night, this is the sort of thing that goes through my head. Over and over. I read articles about the federal and state budget and that does nothing for my sleep. I try to calm myself and remind myself that there is no sense in worrying about these things. Time will tell.  None of that helps.

There are no answers of course. I do not know what will happen in the future. Nobody does. So there's just getting through the day, trying to put pieces in place for her, and praying. Feel free to join in.

Sunday, January 15, 2017

I'm Another Year Older

I had my birthday a few days ago and I am now officially closer to sixty years old than I am to fifty.

Today, RJC had a pretty bad hour. It was one of those situations where we couldn't do much of anything except ride it out. There was screaming and pinching and jumping and banging into the wall and frantic hand gestures and even some tears (which we rarely see). It so happens that I also had cataract surgery recently so I was terrified that her flailing hands would hit one of my eyes. Something I honestly hadn't worried about before - if she hit me, she hit me.  When things finally calmed down, she was a mass of sweat and we were a mass of nerves.

Talk about a dose of reality. I could not help but to think, once again, what is coming for us in the next fifteen years or so. My husband and I are getting older. This means a greater chance that medical issues will come up. It is probable that we won't be as strong or as steady. She, however, is still young and strong and, well, diagnosed with autism. This means she will continually need 24/7 support, including people who can help her get through these difficult moments without her (or them) getting hurt.

She also needs happiness, safety, and love.

So what's a parent to do? Yes yes yes I am aware that there are group homes. I am also very aware that getting her into a group home isn't possible right now (it's a State thing) and I'm also looking for something different for her. I'm not convinced that a group home setting is the appropriate place for her. I'm trying to think of alternatives but I haven't settled yet on what would make me comfortable for her. Not completely anyway, though I have some thoughts.

I am starting to seriously think that we need to find like-minded people to sit down with (people looking for something different than a group home setting), draw up a plan, and figure out what steps we need to take to make this (whatever it is) happen. I imagine that money will be a huge obstacle, as will property (tightly intertwined to the money issue), legal issues, finding those like-minded people, and about a zillion other things. To this point whenever we talk about our dreams for our gal they seem so insurmountable that I freeze. In truth, it's kind of at that point now where it's (as my mom used to say) "Poop or get off the pot" (she used a different word for "poop". Just sayin').

Today was pretty eye opening. Maybe it will give me some oomph to move on this. My fear is that I'm tired and overwhelmed with what I'm doing as it is. Hopefully I'll find the strength to pull this together and at least get a start at chatting with people. How hard can that be? A step at a time and see where it goes.

For my gal. For myself. For my family. For other families. Because she deserves to be happy and safe and loved.