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.
Sunday, July 15, 2018
Sunday, July 8, 2018
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.
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.
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