Almost Camp Time Again

Next Sunday, RJC is off to camp for two weeks. She does not know yet. We will probably tell her on Friday so she has less time to anticipate and build up anxiety. Every year I panic, yet every year I enjoy the two weeks, and every year I think it will be easier the next year. This is her sixth year and so far, it is not any easier. I am already worrying, it is already affecting my ability to fall asleep, and I am already thinking that this is one major part that really stinks about her diagnosis. Stepping back from her day to day care is difficult.  Even for only two weeks. It takes trust in the people we leave her with and trust in ourselves that we are doing the right thing.


This year, once we turned the calendar to 2018, she refused to say or hear the word "July." She knows she goes to camp sometime in July so I imagine her thinking is that if she pretends it does not exist then camp will not exist. It was a bit humorous at first. She loves to plan and has a calendar filled with all sorts of plans through 2022.  Except July. July is blank. At one point she needed to say something about July and instead just said "J." It made me start to rethink whether or not we should insist she goes for the two weeks. Both my husband and younger daughter were reassuring and reminded me that this was not about her not being miserable and unhappy. It is about change and her not wanting to leave the familiarity of home. Or me.


I have found that once we are both settled in and I've received the first nice call or email from the camp, I relax a bit. I've grown to love the time with my husband. So much so that after last year I asked if we could do a month this year. Granted, that thought didn't last - that's just too much for all of us - but the point is that it was a great two weeks for myself and my husband to slow down and just be together. These two weeks for us as a couple, is about reconnecting. We talk about what we hope our retirement years will look like. We are able to be spontaneous since we do not need to find anybody to stay home with RJC. We do some house cleaning/fixing that is easier to do when it's just us in the house. Mostly we appreciate the time together which reminds us of what brought us together in the first place.


Now that we are only one week away I am really working hard to distract myself. Still, even during the day, I picture packing the suitcase, packing up the car, the 45 minute drive, and the intake process. It mostly makes my stomach hurt. Why I can't just let this be when we are going on the 6th year and I know she is perfectly happy? The camp offers her structured fun, time to be independent, a place to meet new people, an opportunity to obtain new skills, and a chance to reinforce the very important concept that she is fine without her parents constantly around.


In fact, that last issue is the reason we started to send her to camp. We need her to feel comfortable and know that she is fine without us around. It will be her future at some point and this knowledge, gained through this experience, is a gift to her. A gift of self confidence and connections with others.  In fact, these two weeks are not really about her going to camp. It is about a life skill that will be essential for her in order to live a happy life as she gets older and finds her way in the world without us around on a daily basis...and at some point...without us around.


I am very sure that my current anxiety centers on the idea that right now I can meet her needs. I am the mama - the one who understands her when others don't and who can find ways to figure out what she needs when she does not have the words. The thought of a time coming when I cannot be her "go to" or "her person" (if you watch Grey's Anatomy) is incredibly painful to think about yet it is our responsibility as her parents to do so. 


This is always a rough week and I have come to expect feeling out of sorts and a bit of sadness laced with a bit of guilt. I have also come to expect to feel excited and look forward to having some fun with my husband, seeing friends and relaxing a bit. It is certainly a week of complicated emotions.  In the end, I know that this is the right thing for RJC even if it is not her preference and even if it is not easy for me.


Because I love her.

The Day Autism Took Over

I always have mixed feelings when I share about a day like today. I don't want to sound whiny. It's just that I need - really need - people to understand my girl. She is not a brat. She just has days when Autism takes over. This is what one of those days looks like.


Yesterday was an amazing day with RJC. Today was definitely not amazing. 


My husband often works early on Sunday mornings and this was one of those days. He was up and out before RJC and I had opened our eyes. Usually our Sunday mornings are reserved for grocery shopping which she loves. That was the plan.  The morning started off just fine. I exercised, she played on the iPad, we both had breakfast and before 10 am we were off to the store.


We did not get far before the screaming began. To be clear, it is not just screaming. It is more like a soprano opera singer who cannot actually hit the high notes anymore but tries like heck to do so. Interspersed between notes she will say phrases that do not make sense - at least not to me. Then back to the opera thing. It is beyond grating. I try to distract her with questions such as "What are you going to buy today?" She would answer, but then go immediately back to her screaming/phrases. The grocery store is about ten minutes away and after three minutes I am gripping the wheel and trying to ignore the inclination to speed. I try everything I can think of to ask her, including trying to get her to sing along with me. By the time we are at the exit of the highway which is about one minute from the grocery store, I am beyond stressed. I also know there is no way we will make it through the store. I steel myself and say "RJC. We are going home. We will try again at 11:00."  Needless to say, this was not received well and now she is not only screaming/phrases but hitting her face and rubbing her arms quite hard.


We get home and I ask her if she wants me to wash her face. She says yes. We have a routine for when she is very upset which is for me to use a soft washcloth and wash her face with cool water. By this time, she feels practically feverish and is sweaty so the cool water is soothing. I hold her and rock her and wash her face some more and eventually she is more calm. She goes to get an ice pack to put on her arm. I let my husband know what's going on and he suggests I give her allergy medication and Advil. Great idea. It is possible that something hurts. I'm annoyed with myself for not having thought of these simple things but when in the midst of these issues I'm mostly worried about her self injurious behaviors. She finally sits quietly next to me on the couch and we wait together until it is 11 am. I ask her if she wants to go to the store and she says she does.


This time we have a quiet ride. Our grocery shopping is done quickly and with no problems at all. Phew.


When we get home she loves to put away the groceries. My husband comes home from work a bit earlier than expected because he knows what has been going on and wants to help. RJC asks to take a nap with me. She is snuggled in on the couch with her head on my lap and for the next forty-five minutes she is still as I smooth her hair with my hand.  She is quietly scripting but it seems to relax her. She gets up and is on her iPad and in a little while she is yelling, though not nearly as loud as it was previously and there are no self injurious behaviors. Just yelling.  Hubby and I are sitting on the couch watching tv with the closed caption on. Eventually he says he'd really like to go out and enjoy the beautiful day. I suggest he take a walk or a ride someplace and he clarifies that he'd like to spend the day with RJC and me and we should go out someplace.


Now after a few hours of what I've been dealing with, I tend to hibernate. I have no interest in being around people. I do not want to be outside. If I had my way I'd be sleeping but I cannot bring myself to leave her when she is obviously distressed so instead I watch tv, play on my phone, and try to read (yes, I multitask). I also go over and over in my head what it was that happened and if there was a different action I should have taken. I obsess over what she is doing now, and try to figure out what the source of her frustration or discomfort may be. I know I won't figure it out, but I run through different thoughts anyway. My husband wanders off and I hear him making noise. He is taking care of one of the household chores we spoke about doing at some time. It's of a physical nature and my head tells me to go help but my body says "couch." So I sit.


The afternoon goes by and I am thinking about the fact that I should move. Moving is good. Moving will help me feel better. Moving will get me to a different place.  I am still feeling bad that RJC has had a rough day but now I'm also feeling bad that I didn't want to go out and my husband has been working in the house after putting in many hours at his workplace. I'm playing on my phone so I look up a place where we can play miniature golf and have ice cream. It's something all of us enjoy doing. I find a spot we have never been to and it's an hour away. RJC likes riding in the car and watching her DVDs so why not?  I decide I'll surprise my husband. Let's just say he was more than surprised and quite happy when I tell him I have a plan but I don't tell him where we are going. Now I'm sort of excited to have a bit of an adventure and surprise my hubby at the same time. We put RJC in the car and off we go.


Not even kidding. We get a few miles down the road and the screaming begins. This time RJC is obsessively asking where we are going. I make up a name of a place (so as not to spoil the surprise for my husband) but she continues to ask quite loudly where we are going and when we will be there. This continues, nonstop, for the next 45 minutes until we are there. In between my trying to placate her, my husband and I are trying to have a conversation. It's very frustrating and I'm once again gripping the wheel. Finally we arrive.


The afternoon went ok, actually. She's not exactly thrilled but she is quiet and cooperative. We all get more than one holes-in-one. RJC could not care less but we are thrilled! After playing, as we are eating our ice cream, the woman at the snack bar comes over to chat with us. She works with young adults diagnosed with autism. We have a fairly extensive conversation and RJC sits quietly, enjoying the outdoors. We exchange information and thoughts and we marvel at how caring this woman is about her work. It's very uplifting.


We head home and once in the car RJC politely and clearly tells us her headphones aren't working and she needs new ones. I am still not sure what started the screaming this morning on the way to the store (she only uses the DVDs for longer trips) but I think this may have been why she was screaming in the car on the way to this outing. It feels good to have that understanding, at least. We reassure her that we will get new ones and praise her for using her words. She is happily watching her DVDs on the ride home. We can hear them as well since she can't use the headphones. With Disney in the background, hubby and I chat and the ride home is quite a pleasure.


Since we have been home, RJC has apologized many times for yelling at the store. It obviously bothers her. She needs lots of reassurance that all is well. We will go the store next Sunday in the red car. Mommy is not angry. RJC is a good girl for using her words. Etc.


Days like this are long but I am grateful that it ends on a positive note. Days like this are a reminder of how complicated it is for her to communicate. I wonder when the research will give us some answers.  I remind myself that we do not have days like this as much as we used to and that tomorrow is another day. For now, that will have to do.

Forever Comes Day by Day

When I wrote the most recent post, I left the most important issue out. It was not on purpose, nor was it conscious. It came to me as I was reading the kind and supportive feedback as well as in some conversations I was having.  So here it is. Part 2 of the previous post.


THEN:  I (secretly) hoped that autism would be a fleeting and brief blip on the screen. After all, she was just 3 1/2 when the official diagnosis came. I held on to the idea that RJC would recover by the time she went to first grade and would go on to be in a "regular" classroom, get her driver's license, go to the high school prom, graduate from college, get a job, apartment, relationship, marriage, babies...

• Though controversial, the concept of "recovery" is not unheard of - and I have no interest in debating this issue.  I also have a vague recollection of reading that some teeny tiny percentage of those diagnosed on the autism spectrum have a spontaneous recovery. I would daydream about her waking up in the morning and talking to me. Conversationally, about whatever was on her mind. I imagined my reaction. A slow dawning, then complete joy at being able to understand what she was feeling and thinking.

I did not express this to anyone and in fact, when asked if autism was lifelong, I would nod and say "This is definitely not something she will outgrow."


At some point, I came to believe that she actually would not outgrow her autism diagnosis but I still held on to the idea that even with her diagnosis, she would be able to have a conversation that included topics that were age relevant and that she would live independently but with some support. I did not have specifics in mind. Just the idea that we would need to live nearby and maybe she'd need some counseling and coaching on life skills.


Eventually, probably by the end of first grade, it was obvious that a recovery was not going to happen, no matter how many hours of behavioral intervention she had or how committed we were to helping her, or how many professionals we took her to, or what adjustments we made to her diet. 


There was no big mourning period or heartfelt conversation with my husband. It was sort of something that my brain knew and eventually my heart caught up with my brain.

NOW:  I know, with every fiber of my being, that her autism diagnosis is here to stay.

• I am very aware that recovery will not happen for her and I do not have daydreams about her being a typical adult.  It does not mean I am happy about it but I am not always sad about it. It does not mean I wish she was different but it also does not mean I feel ok that she has to struggle on a daily basis with so many issues.

My life is not what I pictured. That's just a fact.


Yes, I realize most people's lives are not what they pictured. Yes, I realize there are a zillion worse things than having a child with autism. Yes, I realize how lucky I am to have RJC in my life. Yes, I realize that I need to count my blessings.


Still, I do not think too many people consider what it would be like to have a child that stays developmentally many years younger than they are chronologically. Before autism, I can tell you with absolute certainty that this was not what I ever considered. I never thought I'd have a purple dinosaur living in my home after my daughter was about 5 years old, I never thought I'd still be looking for/paying for somebody to stay with my adult daughter so I could go to the store (or have an uninterrupted conversation with my husband, or sleep when I'm sick etc). I never thought I'd have to be an expert in educational law and would then need to use it at endless meetings. I never thought I'd have to learn to navigate the various systems that could possibly be helpful to my adult daughter. Most definitely, I never thought I'd be in a panic about how or where she would live when I die.


The title of this post comes from a dear and wise friend. I was speaking with her recently about my last post.  I said something about being panicked about autism being a "forever thing" when she looked at me and said these words. "Forever comes day by day." I knew that this was the post I needed to write and I also know that she is absolutely correct. Every day we are teaching her or practicing skills with her that she will need when we are no longer here. Every day we are working toward finding the agencies that will give her the supports she will need when we are no longer here. Every day we are noticing her language is improving and reinforcing it so she will use it when we are no longer here.


And every moment of every day we are loving her and she will remember that when we are no longer here.


Forever comes day by day.

Not required to complete the work BUT...

When I was in high school, I learned this as a song and even back then it meant something to me.  Now, when I find myself in overwhelmed mode, I will start to hum the tune in my head and it reminds me that it is okay to take a step back BUT once rested, it is time to take action again.


I've been asked by various people, including parents with younger children on the autism spectrum, if life with RJC has gotten easier with time. I always muddle through a response that probably makes me sound like I'm an alien.  It is just not a simple answer.


Life has changed significantly for us over the years. The hopes we had for RJC then are not the hopes we have now. The expectations we had for had RJC then are not the expectations we have now. The energy level we, as parents, had then is not the energy level we have now.


THEN:  it was about getting through the day with everyone physically safe.
We worried about RJC's safety because she had great fine and gross motor skills but no sense of danger and not enough language for us to communicate danger. She would bolt - and she was fast. Really fast.

• The fear of her getting hit by a car was a real one. Almost happened when we were at my cousin's wedding but I managed to grab her by the ponytail.
• The fear of her getting out of our house unsupervised was a real one (she once climbed out our window at 4 am in a rain storm...she wanted to play with her bowling set). We had our windows nailed shut and put in central air. We alerted the fire department to this.
• The fear of her seriously hurting herself or somebody else when in the midst of a tantrum was always on our mind. Leaving her with a babysitter or waiting for that darn phone call from school made us edgy and it was difficult to enjoy our time, even if she wasn't with us.  On the positive side, we have been incredibly lucky with the caretakers we've had for her. Always calm in the midst of her difficult behaviors.
• The fear of somebody calling the police because they thought we were hurting her while we were in public and she was screaming and flailing, usually due to her lack of ability to communicate or understand. We used to carry business cards around with us to give people information on autism for this very purpose.

NOW:  We still worry about her physical safety but it's a different kind of worry and we have acquired some techniques that help us with these situations.

• We still worry about the traffic issue but she is definitely better about staying with us when we are crossing streets or in parking lots. We specifically taught her, through ABA (applied behavior analysis) how to stay with us in public places. She is now fine about holding our hand and her bolting only occurs when she is very upset. We have also learned not to take her anyplace if we know she is already upset.
• We still worry about her getting out unsupervised. We now have an alarm that is hooked up to the police and fire departments. Our windows are no longer nailed shut. She has the skill to play on her iPad independently and it keeps her busy for long periods of time. At this point it is her preferred activity so staying inside is fine with her.
• We still worry that she can hurt herself or others. This has not changed, however the incidences of these behaviors have declined significantly. It is still a worry because we can never be sure what may trigger an incident.
• We still worry that somebody will call the police because they thought we were hurting her while we were in public and she was screaming and flailing. On the positive side (in a weird sort of way) more people are aware of autism and what behaviors are associated with it. A quick explanation is all that is needed - no need for handing out business cards. I'd also like to think that more of those associated with the police and fire departments are aware of autism.

THEN:  We were worried about what skills she would be able to learn that would help her with daily living skills and would help her hold a job.

• We worried that she would never read or be able to do simple math.
• We worried that she would never get through a day without a major tantrum that included hitting, screaming, and breaking things.
• We worried that she would never gain functional communication skills.

NOW: We are still worried about these issues because though she has progressed significantly, she is still very lacking in these areas.

• She can read and do simple math. Her ability to read the words vs. her ability to comprehend are two very different things. She is a great sight reader and once she has learned a word she knows the word. Comprehension is limited. She does best with written, meaningful instructions and she still likes toddler/preschool stories. She remembers her multiplication tables and will use her skills as necessary but in her day-to-day life these opportunities don't pop up much.
• Her tantrums are no longer daily. Phew.                                                                      On the other hand, we seem to see clusters of days where near-tantrums (if not full blown ones) occur. This is such a problem when it comes to being out and about in the community, let alone holding a job. It is difficult to know when or why these will occur so it's always questionable when we are out with her or out by ourselves. We do still have fantastic caregivers but in truth, we can't help but to feel edgy when we are out by ourselves. I know I glance at my phone too often to be sure I haven't missed an important text and we usually plan our outings so that we are not terribly far away.  In summary, this issue still greatly affects our marriage in terms of our alone time or time with our friends.
• She has definitely gained functional communication skills. This has taken years and years of hard and consistent work by her teachers and other professionals who worked with her and with us. We still rely heavily on a BCBA (Board Certified Behavior Analyst) who comes to our home and is available to us via phone and email. We continue to work on this issue and it will be a lifetime issue that we can never give up on. Ever. Bottom line is, the more she communicates, the less agitation and anxiety, the less behaviors.

The biggest area, where the worry is significantly greater now than it was when she was younger, has to do with her future. When she was younger, it was easy to be hopeful. We were naïve and uninformed about how the real world worked in terms of benefits, options for care, transportation issues...the list goes on. It is impossible to explain, in a short and concise paragraph, how this worry is by far the most complex and at this time in our lives and in hers, the most significant.


THEN:  We were worried about her future.

• We could not imagine how she would ever function without us and we wanted to give her all the skills she needed to function independently.
• We assumed a group home type setting would be available when she needed it and that there would be choices of where she'd live and with whom she'd live.
• We wanted to be sure she had work skills. She did great at school in her workshop setting and assumed we would find this type of paid work for her as an adult.

NOW: We worry constantly and endlessly about her future.  It keeps me up at night. I talk about it with friends, I research various options, I have joined our state's Regional Advisory Council, I email and call politicians.

• We know she will function without us if we find the right setting. She does well for two weeks at overnight camp and she connects with people when she is comfortable. She has more daily living skills and we continue to work with her BCBA to teach her what we can. Just the other day we worked on moving the laundry to the dryer.
• A group home setting may or may not be the best one for her. It remains to be seen. Certainly we can no longer assume that one will be available when she needs it or that there would be choices of where she'd live and with whom she'd live.  We also do not assume that Social Security or Medicaid will be available. We have to figure out something just in the case. This is probably the biggest negative change for us. We never realized how complicated the adult system is and how incredibly precarious it is. Just getting information is difficult, let alone the mounds of paperwork involved.
• We were so proud of the work skills she acquired in school but for her, they did not translate to the adult world. In school they could understand and handle her complex behaviors. The real world does not. In fact, they are scared for liability issues. Getting group supported employment opportunities is incredibly difficult for many issues, including political ones. I would have to write pages and pages to discuss this. Suffice to say, this is another area of huge challenges.

Hopefully you have made it through this entire blog post. Now, go back to the top quote and read it again, with this information in mind. This is how we live. We have tons of work to do in order to get our ducks in a row when it comes to RJC's future. We will never be done. One issue will be resolved and three others will come up. For me, at some point I will get overwhelmed and feel hopeless and helpless. I'll come to a standstill.  Paperwork will stare up at me from my dresser. I will drive my husband crazy spewing out my fears without allowing him to console me. I cannot listen to reason. I will want to eat chocolate and ice cream and watch mindless television. But in the end, this is my responsibility as her mom. I am the woman she counts on and looks to for her safety and her future. So I put on my big girl pants and back at it I go. I find an energy I did not think I had I plug away. I lean on my husband and together we find a new article, a new committee, a new skill we want to work on.


We know we will never complete the work - but we will always, always do the work. We may need a rest but we will never give up.

Drowning in Paperwork

The title says it all.


I've been in the middle of a paperwork mess related to RJC. Basically some department did not do their job and (in the words of the employee I was speaking to) "dropped the ball" so I have had to gather a ridiculous amount of personal information, copy it all, and complete various other forms. Last night I found the last piece of needed information, copied it, and added it to the box where I was keeping all of the documentation.


The idea of mailing, faxing, or scanning this personal information felt too risky and much too cumbersome so I called and spoke with Miss Employee to ask if I could drop if off in person. This was my mission this morning.  This also means that I had to change RJC's morning routine in order to get there when it first opened.  As with any government agency I knew it would be a hopping place.


RJC was amazingly cooperative. It probably helped that I told her we could go to Dunkin' Donuts. I am not above bribery at 7:30 a.m. We got into the car with the treasured box and off we went. I pulled in at about 8:20 a.m. and the big lot was full. I called to let Miss Employee know I was there and she gave me instructions to come inside, find the State Trooper and she would see me.


We went in - or tried to. The line was literally out the door. I was peeking between the bodies to see the layout of the room and where this State Trooper was that I was supposed to find. Between the bodies, all I could see was a very large room, a counter, and a few scattered lucky people already sitting in the waiting area. I heard conversation around me as people were trying to figure out if there was more than one person working behind the counter. RJC was patiently holding my hand and asking if it was time for donuts. I asked the man in front of me if he minded if I tried to scoot inside because I had an appointment. He looked at me somewhat warily, and offering no encouragement, said "Sure, but I don't know what good it will do." He actually was helpful in spotting another door so we went in.


I saw the State Trooper up in the front of the room, sitting at a desk on the side so we headed over. Alas, a Security Guard at a desk in the back of the room where we had just entered called me over. He wanted to know where I was going so I explained that I was there to meet Miss Employee and she told me to go to the State Trooper. He wanted to know who this employee was and where she worked. That threw me. I was in a government agency building and assumed that all the employees worked for this same agency. I didn't want to sound rude so I skipped over the "where does she work" part and gave him her name. He asked if I had a phone number for her and since I had called it a few times I rattled off the number by memory. All the while I'm looking at the State Trooper and thinking of how desperately I wanted to just walk away and hand him the doggone box.


He picks up the phone and I now see a lady standing next to the State Trooper and looking around. I alert Security Guard to this fact. She spots me, RJC, the box, and Security Guard at just about the same time. We are now all walking toward each other to meet in the middle when Security Guard puts out his arm in a "halt" sort of motion. He continues a few steps to meet with
Miss Employee privately first, they have a few words, and now we are allowed to continue. I hand her the box, introduce her to RJC and in about three seconds she and the box are gone.


It was somewhat anticlimactic. I thought maybe we'd have a few nice words. She would tell me she understands that this was time consuming and appreciates the effort I must have gone through. Nope. Literally, she said "hi" and moved on with her day, taking my box with her.


RJC and I move on with our day as well. We stop at Dunkin' for her cherished donut (which she does not actually eat - just licks the frosting and tosses the rest) and I still manage to get her to her program on time. I also manage to get to work on time. This was after weeks of stressing over digging up the correct information and duplicating it and it seemed as though something big should have happened. I mean, really? A parade would have been appropriate. Instead, it was a few minutes of chaos punctuated by a quick grab and run of the box. Sigh.


I wonder if Miss Employee and I will meet again. I am so hoping that is not the case, but I am not counting on it. Certainly I will be updating as this issue moves forward. Any and all positive thoughts our way are welcome. There are only so many mornings like this I can handle. Luckily Dunkin' also has coffee.

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.
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A new experience. This really was a night to shine.

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.