Hubby and I are planning a trip to Florida and RJC will be coming along as well. Our very patient, loving and generous cousins have offered to have all of us stay with them.
There's just one teeny tiny issue:
There is an alligator that pretty much lives outside their place.
An alligator.
Now over the years we have told RJC some important rules. The rule: "No riding the dog" was especially important when she was smaller and larger dogs were looking mighty fun to hop on. We needed to say it as a reminder if we were going to somebody's house or we were out and about in the community and we spotted a large dog. "No riding the dog" was a part of our repertoire. Still, we had never considered that we would need to tell her "No riding the alligator."
The big problem is that we are not absolutely sure that she would care what we tell her once she sees the thing. She really, really likes alligators. In fact, any big sort of creature is right up her alley. Like alligators. So sadly, we are not staying with these most beloved cousins but instead we have rented a condo.
I kid you not.
RJC has always had very good motor skills and no comprehension of danger. When she was young, she also did not have the receptive language skills to understand rules. This is a dangerous combination. We used a toddler harness for a ridiculously long time. As she has grown in size, I thank goodness she has also gained language skills so we can remind her about the safety rules. While her increased language skills have given us some peace of mind, when something is really enticing to her...like an alligator...we cannot count on her to remember or care about the rule.
So if you happen to meet up with us while we are on vacation and you happen to hear one of us say to RJC, "Remember. No riding the alligator." We aren't kidding.
Months have gone by since I have posted. It seemed like there was lots going on with our gal for a while. She was not in her best place and it was exhausting. Most grating and frustrating and concerning was the constant yelling we seemed to be getting from her. She often appeared uptight. Like a guitar string about to break. The thought of sitting down to write about it after living it? Nope. Wasn't happening.
Lately, however, there have been some nice positives going on. This seems to happen. We get into cycles of negatives and suddenly it just turns around. We do not know why. You can bet that if we did know, we would be doing whatever needed to be done to get us here. Still, we can appreciate the now. She is more settled, less anxious, and the screaming has lessened considerably. There has also been a bit of a language breakthrough that we have been working on for...well...years. Literally. Years.
That very tricky "why/because" concept.
Here's what usually happens:
Me: Why are you yelling?
RJC: Because I'm angry.
Me: Why are you angry?
RJC: Because I'm mad.
Me: Why are you mad?
RJC: Because I'm angry.
Here's what happened the other day:
Me: Why are you yelling?
RJC: Because I'm angry.
Me: Why are you angry?
RJC: Because I'm mad.
Me: Why are you mad?
RJC: Because laundry.
My brain then went: Wait. What? So I zipped off an email to her Day Program and asked if it was possible that something happened having to do with laundry. Honestly...I know. Sometimes the things I say (or write) sound ridiculous, even to me. But I needed to try.
An email came back that yes, the previous morning they were working on teaching the task of doing laundry and she started to scream. It lasted a while and then all was well.
I was never so happy to know that my gal was screaming at her program. Over laundry.
Since then, I've been laser focused on finding different situations for us to work on the "why/because" skill. She has been more successful in avoiding the odd spiral she usually lands in and instead, has looked for ways to give us actual information. Nothing earth shatteringly important but enough for us to know that she is slowly grasping the concept.
For example, she had a bandaid on her arm.
Me: Why do you have a bandaid?
RJC: Because boo boo.
(YES)!
Me: Why are you yawning?
RJC: Because I'm tired. Not sleep yet.
(DOUBLE YES! TWO SENTENCES)!
Whoa. Usually she won't know what to answer so she will say "yes" as though she is agreeing with me. Yes, she has a bandaid or yes, she is tired. Or she will find a way to get into that cycle as described above.
These new responses were appropriate and gave me some information.
What does this mean you may ask? Why is this skill so important? In one word. Safety. It has always been my huge fear and major sadness that something may happen to our girl and she would not be able to communicate what happened. Every time she screams and we can't figure out the catalyst, it is a stab of fear in my heart. We are nowhere near her being able to tell us in clear words what the source of an issue may be. We are nowhere near to her being able to share anything abstract. We are nowhere near any type of consistency as she will still often reply "yes" to my "why" questions. Still, there is indication that she is starting to understand.
This is exciting. This will be slow. We will keep on keepin' on.
NOTE: A few thoughts:
The interesting thing about RJC and her autism is that her language continues to develop. I think back to the professionals who told us that she would stop developing language at age 5. They were wrong.
Also, language is also not something she simply learns from hearing other people. Language concepts need to be directly taught. Yet at age 21, she left school and pooof. No more Speech Therapy (or Occupational Therapy, or Physical Therapy for those who used to have them). Granted, this brings us to an entirely different topic on appropriate services for adults diagnosed with autism and how difficult they are to find, as well as expensive to obtain. Yet it needed to be mentioned.
This blog has become my Comfortable Spot. I love it here. I talk about some difficult stuff with complete honesty and it is a relief to get things off my chest. Writing also helps me to organize my thoughts while then leads to problem solving. Everyone should have a Comfortable Spot and this is mine.
In the past few months I have come to a somewhat uncomfortable realization about myself. I am no longer a good conversationalist. I used to be decent at the social thing. I could chat about various subjects - world issues, books, movies, sports, work, and various odds and ends that one would label "small talk." When meeting somebody for the first time, I was always interested in hearing about their lives. I loved learning about them and where they live, their families, their work, etc.
Today we went to meet somebody new. Somebody associated with a potential, very far-in-the-future program for RJC. It was an interesting, easy, flowing conversation with a tad bit of humor mixed in. When we left, I not only realized how relaxing it was to have an open, honest conversation but I also realized how often I feel incredibly awkward in a "normal" conversation. These types of conversations (that I used to easily slip into) have become much harder work.
I can easily slip into talking about my daughter and our family and all the craziness that surrounds us. It is literally on my mind all the time AND when I do talk about our family I speak with passion. I can get worked up, I can giggle at some things, and I can become emotional in all sorts of ways. We spend so much time in our household talking about how to do the everyday things that other people just go and do. Need to do the grocery shopping? First we need to talk about which one of us will stay with RJC in the store and which one will do our family shopping. Then we need to strategize - should we feed her first so we have a chance that she will be in a better mood or wait so that we can offer dinner and then a treat as reinforcement for good behavior? We need to remember the new program for safety in the parking lot - let's talk it over so we are on the same page. This is "normal" to me.
So now, when I am hanging out with people who do not work in some related field of special needs or live the life of special needs, I find that I sometimes feel uncomfortable. Instead of the easy banter I used to be able to enjoy, I talk about what is on my mind and about my family - and end up giving out much too much information and spending too much time talking about the day-to-day stuff that probably isn't all that interesting. I mean really. Nobody wants to talk about going to the grocery store.
The thing is, that for me, the grocery store trip was a major hurdle in my day and when we get through it I want to tell somebody!
Luckily, I have this blog. It's My Comfortable Spot. It's where I can say how things really are and not feel bad about doing so because that's the entire purpose for writing. I can write all sorts of things and people can choose to avoid reading all together or stop reading when they are tired of the topic. It won't hurt my feelings because I will never know. It's also a great place to play the honesty card. Again, it's the purpose for writing. I don't sugar coat anything and I'm not particularly careful with my words. It's easy to be here.
Still, I'm thinking that this is an area where I need to improve so here's my strategy: to remember to talk about whatever it is people talk about (you lead, I'll follow), and to remember that everyone has struggles...and we don't need to air them in every conversation.
That being said, I will also cut myself a break and know that My Comfortable Spot is here when needed...and so are my friends.
We have reached the point where we just cannot stay in the house as it is and need to do some serious updating and renovating. Even me, “Queen of Accepting Mediocrity” has finally thrown in the towel so we are taking the plunge. We’ve gone on like this for a quite a while now, mostly waiting until a good amount of time has gone by that our gal wasn’t still creating huge holes in the wall and/or throwing things. While I am hesitant to say that we are good to go (trust me, if you went through even one of these episodes you’d never say “oh that will never happen again”) we need to have our home back. I need a space that is relaxing and comfortable. Hubby also made a very good point. We aren't always able to visit with people so we need a place where we can actually invite people in and not feel slightly mortified. That was the winning argument.
I do tend to be the real life version of "When You Give a Mouse a Cookie." Once we start doing something it inevitably leads to the need to do something else. This project is growing. On the positive side, our house is not very large. We are also excited to get to the end result so while we aren't looking forward to doing all of this, we are very much looking forward to having it done. That's motivating.
Home improvement is stressful for anyone. Add autism to the mix and there's an added dimension of stress to the process. We have been strategizing to try to figure out how to make this least impactful on our gal. We do not want a stressed out RJC (one stressed out woman in the house is plenty enough for Hubby). Here's a look at what we have been generally trying to consider in making this process bearable.
The first issue was figuring out when to do this. Since we need to be out of the house for a few days while the wood floor is fixed and finished, we decided we'd need to do this while the three of us are on a planned little getaway. That also means that we needed to come up with a plan quickly since that little getaway is coming up quickly!
Fixing the floor means taking everything out of the living room/dining room and apparently not wearing shoes on the floor for at least two weeks after they are done. The challenge is that RJC wears her sneakers until she takes her shower at 7 (not 6:59...7). We could not figure out how we were going to get her to put on slippers as this is so out of the routine. We decided that the best way to do this is to make a new rule starting immediately when she came home from camp. As soon as we come in the house we need to change to slippers. She was not thrilled and there was some loud protesting but we have been consistent about insisting that she change into her slippers. She now will do it with a reminder but usually no more protesting. I imagine that soon it will become part of her routine.
The other part of this is that we need to move all of the furniture out of the living room/dining room. The large pieces will need to wait until the very last minute before we leave, but we need to at least clean out everything. The bookshelves, the knickknacks, the various drawers, etc. RJC has certain items in certain places. She was not in the least bit cooperative when I started to move things around and put them in different rooms. In fact, she was downright loud and unhappy. I attempted to explain that we are getting a new floor...she looked at me like I had two heads. Finally I decided to leave some of her stuff out then slowly move it out, letting her know where it's going and that seems to be working. She has seen everything else moved out and seems to also understand none of the items are being thrown away and she sees them in other rooms. As I am now moving her things she is giving me some side glances but she's not fussing anymore. As of tonight, there are only 5 small items of hers left that I have moved to one empty shelf. Those will be easy to move at the last minute. Everything else is pretty much emptied out, and cleaned off and we mostly just have to move the actual furniture. Again, a last minute chore.
On the list of fixes and renovations to come, the other ones that will directly affect her are new furniture and new carpeting. She has officially killed the couch. It's not just broken it's super broken. I can't explain what she did, but the part of the couch that she sits on is lopsided - the back that she leans on as well as the foot part that kicks out. We are now looking for a couch that she cannot break. HA! Do they even make such a thing? We also need to do this quickly because if we are going to go through the trouble of moving the furniture out to fix the wood floors, we are not putting a broken couch back on the new floor. The new couch needs to be ordered and ready by the time we come back from our little getaway. Tick tock tick tock. The pressure is on. We've looked in some stores, we've called a few places, we've been online. Finding RJC proof furniture that we also like is not easy. The sales people have tried to help us but when we explain what we are looking for they pretty much look perplexed and a bit fearful. Yep. This will be fun.
As for the carpeting, its the same issue. We need to take the furniture out of her room so I do not want to put back her broken dresser. Yes, I realize this does not make us sound good. We have lots of broken furniture. Please don't judge. Just believe me when I tell you it's been complicated. In any case, before we take care of the carpeting we will need to find a new dresser for her room, preferably one that will hold up.
Other than these projects, there are others we will be doing that hopefully they will not impact her world as directly. For now we are walking a tightrope. Some things just need to be done and there is no way to do them without her cooperation, or at least without her tolerance. She has certainly grown emotionally in the last few years so we really think this is the time. It needs to be the time because my own tolerance for the whacky set up we have been living with is gone. I want my home back.
Clicking my heels three times and hoping for the best.
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.
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.
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.
