Let the Change Begin. I received word today that RJC will start her new program. Tomorrow.
I went into her room and sat down on her bed to tell her the good news. I sat with her and watched as she struggled to understand what this meant. She had been asking to go back to her old school and though I told her she was "too big" the problem was that I had nothing to substitute for her old school because I did not know when she'd start her new program. I just told her, "Play with mommy." For a girl who needs and insists on structure (and by structure I mean a detailed schedule of her day), this was not good. So I sat with her as she typed away on the calendar in my iPhone, and I could literally see her coming to the understanding that she was not ever going back to her school. She asked about September and when I told her "no more school" she gave a pretty good screech. It was a struggle for her to understand and it was truly heartbreaking to watch her come to terms with what I was telling her. It made me angry that it went down this way when there really was no need to put her through this had The System worked.
I'm not sure how The System, that works with such a vulnerable and complicated population, can fail this badly at a transition that occurs for so many kids-turned-adults every single year. It seems to me that at this point in time there should be a seamless procedure in place. Nothing should be left for the end of the year. All of this paperwork should be completed by June 1st. Actually, for RJC, there were no changes after her meeting in May so why not automatically take care of the paperwork then? I didn't even know there was paperwork to be done after that meeting! I truly understand that everyone is overworked and overloaded at the end of the school year, which is exactly why this should all be done as soon as possible after a placement is found. This experience has affected RJC emotionally and I can only hope she finds a way to process it all in a calm manner.
It is my very deepest hope that we are moving forward from here. That this is our one blip in the screen for a while. What did I learn from this? I can see that I have a great deal to learn about The System. But guess what? The System has a great deal to learn about me.
Let the Change Begin. For RJC and for me. Not only is RJC making her change from school to adult day programming but I hope to find a way to change The System. Reminds me of her younger days. Looks like I have a new unpaid part-time job. Again.
Wednesday, June 26, 2013
Monday, June 24, 2013
Graduation Day and Types of Tears
Turns out there are different types of tears. Graduation day proved that.
It's funny how you can build something up in your mind, and then when it comes, it's not as bad or as good as you expect. This was the case with today's graduation. I built it up to be an emotional, difficult time and it was. But not as bad as I thought. On the flip side, there were also some beautiful and memorable moments.
The graduation started out with RJC leading the graduates into the gym. "Hi Mommy, Hi Daddy, Hi Grandma, Hi Grandpa" along with shout outs to other people she knew and spotted, while waving with gusto. Couldn't help but to laugh. We all watched as the graduates took their places and we marveled that they were all in caps and gowns. That may not sound like a big deal, but to students with anxiety, sensory issues, need for routine etc. - it was a big deal. And everyone there understood that and appreciated the moment.
Every student was introduced and their teachers said a few words. The graduates came to the front of the room and stood with various degrees of understanding as to what this ceremony was all about. I watched as one student put his head on his teacher's shoulder in such a show of affection and comfort. Another student cheered himself on happily. Another had help walking over to the podium and was encouraged to stay in the general area. Each graduate had their own way of taking in the moment. This was not about their GPA and nobody spoke of scholarships. It was about them - their personalities and their growth. It was amazing to hear some of their stories - such huge accomplishments - some academic, others more about personal growth. Here's what RJC's teacher said about her:
" In May of 2005, P was blessed with another of my graduates. RJC entered P's room with another "concerned" mama wondering "Will it work?" Well it did work. And in the years with P, RJC enjoyed many great experiences. From the Big E to parks and the many great shows we saw over the years. Misunderstandings? A few. Calls to mom? A few. Maybe one or two (on a personal note, that just cracked me up). But, with P's guidance, RJC tried her best to learn and grow as a great River Street student.
When RJC came to my room, she curiously began a new journey to understand new written schedules, different workshop schedules, and of course, B's music with lemonade and popcorn on Friday. Her excitement for this made my Friday's!
RJC will soon begin working at ___ programs, both in (name cities) where I know she will make new friends. I will miss her cheerful morning greeting and her daily compliments about my "pretty glasses."
I loved it.
As wonderful as much of the ceremony was, it was impossible to get through the graduation without tears.
Some were tears of joy. I was truly so very proud of her. She has come a long, long, long way. This was obvious by the fact that she sat (relatively) quiet throughout the ceremony (though there was a bit of "Barney" talk and the standard wiggling and adjusting of clothing). We were blessed to have some special people join us - those professionals who were there for the very rough beginning years and who were the first ones who changed our lives for the better. There were some friends who missed work to share this moment and be supportive (as they always are). My in-laws came and they have been there quite literally since day one. I watched as two friends representing the parents of the school stood up and spoke eloquently (and with just a bit of their own tears). It was very impressive and I felt proud to know such women and thought about how our kids just adored each other. So yes, there was definitely an element of joy.
There were also tears of amazement . I was not only proud of my own gal but of her friends who graduated with her. Over the years I've come to know these young people and in some cases, their families. We've cheered each other's kids on at various holiday shows and award ceremonies. We've shared birthdays, vacation day activities, information, achievements and frustrations. Watching the graduates today and hearing what their teachers said about them was like watching the end of a "to be continued" television series. Sort of bittersweet where you're eager to know what happens next but you're also sad that this season is over.
Then there were those tears of loss. Remembering a student who was no longer with us, who would have graduated with this class. Tears about leaving this school where they kept her safe and happy and where she was cared for emotionally and physically. Where she had an opportunity to grow academically and personally. Where the staff and administrators are completely dedicated and consistently go above and beyond. This is a huge loss to all of us. I loved being able to feel secure when I sent her off in the morning and know that if there were a problem it'd be taken care of appropriately. That if she needed something it would be given. That if I had a question, it would be answered. This is a a huge loss.
There were tears of frustration and fear in thinking about RJC's future. The short-term future. We do not have a starting date for her adult program (yes, we thought we did and I know it will start at some point but apparently there is one darn sheet of paper that has not been faxed over - don't know why. Don't know specifically who. Very frustrating). Once she does start, we have no way to know how her adjustment will be. It is starting over for all of us. I will need to figure out this new system including who to call for what issues, how to best communicate, and how to be sure my gal gets what she needs. Then there are the big issues of her safety and happiness which I've not worried about in many years. The tears of frustration and fear were plenty.
Worst of all - tears of helplessness. The knowledge that her verbal skills are limited and that she will not necessarily be able to express her feelings. She may not understand that she is leaving her school for good. If she does understand that, she may wonder why she is leaving. It is probably confusing and I worry that she'll think she did something wrong. She may feel lost or sad but not be able to express that. There will definitely be people she misses and we all know how painful that can be. And THAT made me saddest of all. Those tears were the ones that could fill an ocean.
I'm glad the day is over. It is hard to explain that I so completely and totally love my girl for who she is, yet at the same time I wish with my heart and soul that things were different. I do not want her to feel scared or confused or unhappy. Yes, I know that every mom feels this way about their children and I feel this way about my other child as well. The difference is in the understanding and processing of those feelings. She may have all of these emotions that she cannot understand or express, and I will not know exactly what she is feeling or how to help her through it. I honestly do not know what she understood about today. She may be expecting to go back to school. I am not able to talk to her about her adult program because I don't know a starting date and we cannot talk about it until it can be added to the calendar. While I know this is not my "fault" it makes me feel like I am failing her in an important way. I cannot help her prepare for her new setting right now and at some point I will just be springing it on her. That seems wrong but there is no other way. It's The System.
So here we are at Graduation Day. Amazing how I spent almost the entire year thinking about and dreading this very day. And here we are. My conclusion?
It's funny how you can build something up in your mind, and then when it comes, it's not as bad or as good as you expect. This was the case with today's graduation. I built it up to be an emotional, difficult time and it was. But not as bad as I thought. On the flip side, there were also some beautiful and memorable moments.
The graduation started out with RJC leading the graduates into the gym. "Hi Mommy, Hi Daddy, Hi Grandma, Hi Grandpa" along with shout outs to other people she knew and spotted, while waving with gusto. Couldn't help but to laugh. We all watched as the graduates took their places and we marveled that they were all in caps and gowns. That may not sound like a big deal, but to students with anxiety, sensory issues, need for routine etc. - it was a big deal. And everyone there understood that and appreciated the moment.
Every student was introduced and their teachers said a few words. The graduates came to the front of the room and stood with various degrees of understanding as to what this ceremony was all about. I watched as one student put his head on his teacher's shoulder in such a show of affection and comfort. Another student cheered himself on happily. Another had help walking over to the podium and was encouraged to stay in the general area. Each graduate had their own way of taking in the moment. This was not about their GPA and nobody spoke of scholarships. It was about them - their personalities and their growth. It was amazing to hear some of their stories - such huge accomplishments - some academic, others more about personal growth. Here's what RJC's teacher said about her:
" In May of 2005, P was blessed with another of my graduates. RJC entered P's room with another "concerned" mama wondering "Will it work?" Well it did work. And in the years with P, RJC enjoyed many great experiences. From the Big E to parks and the many great shows we saw over the years. Misunderstandings? A few. Calls to mom? A few. Maybe one or two (on a personal note, that just cracked me up). But, with P's guidance, RJC tried her best to learn and grow as a great River Street student.
When RJC came to my room, she curiously began a new journey to understand new written schedules, different workshop schedules, and of course, B's music with lemonade and popcorn on Friday. Her excitement for this made my Friday's!
RJC will soon begin working at ___ programs, both in (name cities) where I know she will make new friends. I will miss her cheerful morning greeting and her daily compliments about my "pretty glasses."
I loved it.
As wonderful as much of the ceremony was, it was impossible to get through the graduation without tears.
Some were tears of joy. I was truly so very proud of her. She has come a long, long, long way. This was obvious by the fact that she sat (relatively) quiet throughout the ceremony (though there was a bit of "Barney" talk and the standard wiggling and adjusting of clothing). We were blessed to have some special people join us - those professionals who were there for the very rough beginning years and who were the first ones who changed our lives for the better. There were some friends who missed work to share this moment and be supportive (as they always are). My in-laws came and they have been there quite literally since day one. I watched as two friends representing the parents of the school stood up and spoke eloquently (and with just a bit of their own tears). It was very impressive and I felt proud to know such women and thought about how our kids just adored each other. So yes, there was definitely an element of joy.
There were also tears of amazement . I was not only proud of my own gal but of her friends who graduated with her. Over the years I've come to know these young people and in some cases, their families. We've cheered each other's kids on at various holiday shows and award ceremonies. We've shared birthdays, vacation day activities, information, achievements and frustrations. Watching the graduates today and hearing what their teachers said about them was like watching the end of a "to be continued" television series. Sort of bittersweet where you're eager to know what happens next but you're also sad that this season is over.
Then there were those tears of loss. Remembering a student who was no longer with us, who would have graduated with this class. Tears about leaving this school where they kept her safe and happy and where she was cared for emotionally and physically. Where she had an opportunity to grow academically and personally. Where the staff and administrators are completely dedicated and consistently go above and beyond. This is a huge loss to all of us. I loved being able to feel secure when I sent her off in the morning and know that if there were a problem it'd be taken care of appropriately. That if she needed something it would be given. That if I had a question, it would be answered. This is a a huge loss.
There were tears of frustration and fear in thinking about RJC's future. The short-term future. We do not have a starting date for her adult program (yes, we thought we did and I know it will start at some point but apparently there is one darn sheet of paper that has not been faxed over - don't know why. Don't know specifically who. Very frustrating). Once she does start, we have no way to know how her adjustment will be. It is starting over for all of us. I will need to figure out this new system including who to call for what issues, how to best communicate, and how to be sure my gal gets what she needs. Then there are the big issues of her safety and happiness which I've not worried about in many years. The tears of frustration and fear were plenty.
Worst of all - tears of helplessness. The knowledge that her verbal skills are limited and that she will not necessarily be able to express her feelings. She may not understand that she is leaving her school for good. If she does understand that, she may wonder why she is leaving. It is probably confusing and I worry that she'll think she did something wrong. She may feel lost or sad but not be able to express that. There will definitely be people she misses and we all know how painful that can be. And THAT made me saddest of all. Those tears were the ones that could fill an ocean.
I'm glad the day is over. It is hard to explain that I so completely and totally love my girl for who she is, yet at the same time I wish with my heart and soul that things were different. I do not want her to feel scared or confused or unhappy. Yes, I know that every mom feels this way about their children and I feel this way about my other child as well. The difference is in the understanding and processing of those feelings. She may have all of these emotions that she cannot understand or express, and I will not know exactly what she is feeling or how to help her through it. I honestly do not know what she understood about today. She may be expecting to go back to school. I am not able to talk to her about her adult program because I don't know a starting date and we cannot talk about it until it can be added to the calendar. While I know this is not my "fault" it makes me feel like I am failing her in an important way. I cannot help her prepare for her new setting right now and at some point I will just be springing it on her. That seems wrong but there is no other way. It's The System.
So here we are at Graduation Day. Amazing how I spent almost the entire year thinking about and dreading this very day. And here we are. My conclusion?
This is not an ending, nor is it a beginning. It just is.
And so the adventure continues.
Wednesday, June 12, 2013
21. The Start of the Future.
Yesterday was RJC's 21st birthday. It was a regular day. She went to school. I went to work. The family went to Friendly's. Yet in reality, life is changing - it's just slightly delayed. On June 24th, she will officially "graduate" from school (technically she'll get a Certificate of Completion) and move on to her new adult day program. The one I obsessed over for the last 10 months or so. So, I've been thinking about where we were, where we are, and possibly...where we are going.
Where we were and where we are:
1. Language
It's hard to pinpoint when RJC started to talk. It depends on how one defines "talk" actually. It was close to age 4 or so that words emerged. Does echoing count? She became very good at repeating what was said to her, but comprehending what was said did not come until much later. She could complete a sentence if we were singing and left out a word, but that's not actually communicating a point. She could script from Barney but again, not actually communicating. Communicating in sentences came at some point, but it was a slow process that sort of unfolded. I don't think we even realized it until it was just - there.
Today, she types her daily schedule in my phone. In fact, she has me scheduled for some events in the year 2014. She writes a detailed grocery list before we go shopping. She uses language to communicate and though her syntax is unique she is almost always able to get her point across. She still has challenges with pronouns (that is SO difficult to teach) and cause and effect. She is very concrete, making abstract concepts challenging. When her grandma died it was almost impossible to explain. To this day I'm sure she does not understand what happened but she will sometimes blurt out "Grandma died" which I assume means she is thinking about her and knows that "died" means "not here and will not be back." I am sure she has no idea where grandma is, though, or why she won't come back. Nevertheless, she seems to have come to some acceptance of her own definition of the word. She still scripts but it has meaning. At night we have our ritual. She says the beginning of the Shema (a prayer in Hebrew) and then:
Goodnight Mommy.
Goodnight Rachael.
Goodnight Mommy.
Goodnight Rachael.
Thank you for the two times for Mommy.
You're welcome Rachael.
She loves music and when she has something important to talk about, she sings it. She has her own tune she usually uses, though she has been known to use a more well-known tune. For example, if she wants to remind me that we are going to the mall she may sing "Rachael is going to the mall, to four places, hidee hidee ho." Point taken.
Her language is certainly functional. She uses it to get what she needs but she also uses it simply to make a connection. Her way of using language may not be the way that we use language, but it works. In the end, that's all that matters.
2. Behavior
This is tricky. We have had so many complicated and dangerous behaviors we've dealt with over the years I don't think I could begin to describe this issue in detail - this subject is really its own book. Here's some issues that stand out. When she was very young she would tantrum multiple times a day. Kicking and pinching combined with a high pitched and constant scream. In public and at home. Sometimes we knew why, other times we had absolutely no clue. We had to hand out business cards that explained autism as we left stores and restaurants with a screaming, kicking child, just so people would not call the police. When I was pregnant with our younger daughter the doctor asked if anyone was abusing me at home because I was so black and blue. Then there was a year where she literally would cover her ears anytime we were outdoors. We had a behavior plan in place to get her to keep her hands down. Since we worked on one hand at a time, she resembled Napoleon for a good chunk of that year. We dealt with bolting behavior for many years. This meant that before she went on a field trip I felt the need to scope out the area and draw (pathetic) maps showing areas of possible concern. I lost her once in the mall. We used one of those kid harnesses for many, many years and had to endure stupid comments from strangers who were clueless. Yep - still remember feeling really ticked off by that. We had the year from hell when she was self-injurious and would literally throw herself through our walls. She would bang her head and to this day we still have little "head dents" in our hallway. That year I hardly ever went anywhere other than to work. We went to medication but no relief.
Today, behaviors continue to be challenging though different. We have a better understanding of how to use behavior plans, we know she responds positively to visuals and we have had huge amounts of support from school and our BCBA (Board Certified Behavior Analyst). She has much more language which has decreased her frustration, thus decreasing some of the behaviors. She still needs to have structure and an understanding of what will happen with her daily schedule and prefers to have it written down. Yet if we need to make a change we usually can without too much of a problem. Of course, we have also learned to avoid huge issues. For example, if we are planning a vacation to Disney, we do not tell her until the night before when we cannot push off packing any longer. This way, we know that barring any last minute unforeseeable emergency, the vacation is 99% sure to happen. Cancelling a Disney vacation would NOT go over well. She likes her routines and we have learned to respect that about her without letting it completely rule our lives. It is a very fine balance. Very. I've learned to understand that routine = comfort. Just having that understanding gives me the patience to deal with some of the behaviors that pop up when the routine is interrupted. One of the biggest behavioral challenges continues to be the screaming. We are working on it though, and making progress.
3. Awareness of Others
It used to be that she really did her own thing, preferring to hang solo - looking at herself in a mirror or watching videos. Well, really pieces of videos over and over and over again. She didn't seem to be interested in other people or even notice what was going on around her. There was a situation where her curtains in her room had somehow started to singe and her room filled with smoke. She never moved from her bed. Once we figured out where the smell of smoke was coming from we opened her door and she was just sitting there. The fire department came to our house and she barely looked at the big fire trucks (yep, plural...sigh) in our driveway and in front or our house. In fact, the next day we had a visit from the Fire Marshall asking questions about her because they were concerned that she did not even glance up at a police officer who was trying to talk to her.
Today, she notices everything. Everything. We drive in the car and she points out ambulances, dogs, police officers, restaurants and stores. She knows how to get places and when I miss a turn she bursts out laughing, totally aware that I am lost. She will comment if I get my hair cut ("Mommy, nice hair) or if the phone rings she inevitably asks, "Who's that on the phone, Mommy?" She likes to make calls to a select few people who are very important in her life. She'll take my phone and I won't even know it until I hear her talking. It is completely her initiative.
Where we are going:
I have no idea. This is a journey with no map. We are mostly along for the ride and RJC is driving. I have my dreams for her and though I tend to plan, I've gotten used to having Plan A, Plan B, Plan C, Plan D...and so on. The best plan is not written in stone, but written in sand.
What I've learned over these 21 years is that it is absolutely necessary to be flexible. Change is not necessarily bad. There are lots of ways to get a point across and it's important to listen carefully. RJC is capable of all sorts of amazing things and should not be limited by my own fears. And most important of all - letting go (just a bit) is a good thing. Hardest lesson yet and still working on that one.
21. The start of the future.
Where we were and where we are:
1. Language
It's hard to pinpoint when RJC started to talk. It depends on how one defines "talk" actually. It was close to age 4 or so that words emerged. Does echoing count? She became very good at repeating what was said to her, but comprehending what was said did not come until much later. She could complete a sentence if we were singing and left out a word, but that's not actually communicating a point. She could script from Barney but again, not actually communicating. Communicating in sentences came at some point, but it was a slow process that sort of unfolded. I don't think we even realized it until it was just - there.
Today, she types her daily schedule in my phone. In fact, she has me scheduled for some events in the year 2014. She writes a detailed grocery list before we go shopping. She uses language to communicate and though her syntax is unique she is almost always able to get her point across. She still has challenges with pronouns (that is SO difficult to teach) and cause and effect. She is very concrete, making abstract concepts challenging. When her grandma died it was almost impossible to explain. To this day I'm sure she does not understand what happened but she will sometimes blurt out "Grandma died" which I assume means she is thinking about her and knows that "died" means "not here and will not be back." I am sure she has no idea where grandma is, though, or why she won't come back. Nevertheless, she seems to have come to some acceptance of her own definition of the word. She still scripts but it has meaning. At night we have our ritual. She says the beginning of the Shema (a prayer in Hebrew) and then:
Goodnight Mommy.
Goodnight Rachael.
Goodnight Mommy.
Goodnight Rachael.
Thank you for the two times for Mommy.
You're welcome Rachael.
She loves music and when she has something important to talk about, she sings it. She has her own tune she usually uses, though she has been known to use a more well-known tune. For example, if she wants to remind me that we are going to the mall she may sing "Rachael is going to the mall, to four places, hidee hidee ho." Point taken.
Her language is certainly functional. She uses it to get what she needs but she also uses it simply to make a connection. Her way of using language may not be the way that we use language, but it works. In the end, that's all that matters.
2. Behavior
This is tricky. We have had so many complicated and dangerous behaviors we've dealt with over the years I don't think I could begin to describe this issue in detail - this subject is really its own book. Here's some issues that stand out. When she was very young she would tantrum multiple times a day. Kicking and pinching combined with a high pitched and constant scream. In public and at home. Sometimes we knew why, other times we had absolutely no clue. We had to hand out business cards that explained autism as we left stores and restaurants with a screaming, kicking child, just so people would not call the police. When I was pregnant with our younger daughter the doctor asked if anyone was abusing me at home because I was so black and blue. Then there was a year where she literally would cover her ears anytime we were outdoors. We had a behavior plan in place to get her to keep her hands down. Since we worked on one hand at a time, she resembled Napoleon for a good chunk of that year. We dealt with bolting behavior for many years. This meant that before she went on a field trip I felt the need to scope out the area and draw (pathetic) maps showing areas of possible concern. I lost her once in the mall. We used one of those kid harnesses for many, many years and had to endure stupid comments from strangers who were clueless. Yep - still remember feeling really ticked off by that. We had the year from hell when she was self-injurious and would literally throw herself through our walls. She would bang her head and to this day we still have little "head dents" in our hallway. That year I hardly ever went anywhere other than to work. We went to medication but no relief.
Today, behaviors continue to be challenging though different. We have a better understanding of how to use behavior plans, we know she responds positively to visuals and we have had huge amounts of support from school and our BCBA (Board Certified Behavior Analyst). She has much more language which has decreased her frustration, thus decreasing some of the behaviors. She still needs to have structure and an understanding of what will happen with her daily schedule and prefers to have it written down. Yet if we need to make a change we usually can without too much of a problem. Of course, we have also learned to avoid huge issues. For example, if we are planning a vacation to Disney, we do not tell her until the night before when we cannot push off packing any longer. This way, we know that barring any last minute unforeseeable emergency, the vacation is 99% sure to happen. Cancelling a Disney vacation would NOT go over well. She likes her routines and we have learned to respect that about her without letting it completely rule our lives. It is a very fine balance. Very. I've learned to understand that routine = comfort. Just having that understanding gives me the patience to deal with some of the behaviors that pop up when the routine is interrupted. One of the biggest behavioral challenges continues to be the screaming. We are working on it though, and making progress.
3. Awareness of Others
It used to be that she really did her own thing, preferring to hang solo - looking at herself in a mirror or watching videos. Well, really pieces of videos over and over and over again. She didn't seem to be interested in other people or even notice what was going on around her. There was a situation where her curtains in her room had somehow started to singe and her room filled with smoke. She never moved from her bed. Once we figured out where the smell of smoke was coming from we opened her door and she was just sitting there. The fire department came to our house and she barely looked at the big fire trucks (yep, plural...sigh) in our driveway and in front or our house. In fact, the next day we had a visit from the Fire Marshall asking questions about her because they were concerned that she did not even glance up at a police officer who was trying to talk to her.
Today, she notices everything. Everything. We drive in the car and she points out ambulances, dogs, police officers, restaurants and stores. She knows how to get places and when I miss a turn she bursts out laughing, totally aware that I am lost. She will comment if I get my hair cut ("Mommy, nice hair) or if the phone rings she inevitably asks, "Who's that on the phone, Mommy?" She likes to make calls to a select few people who are very important in her life. She'll take my phone and I won't even know it until I hear her talking. It is completely her initiative.
Where we are going:
I have no idea. This is a journey with no map. We are mostly along for the ride and RJC is driving. I have my dreams for her and though I tend to plan, I've gotten used to having Plan A, Plan B, Plan C, Plan D...and so on. The best plan is not written in stone, but written in sand.
What I've learned over these 21 years is that it is absolutely necessary to be flexible. Change is not necessarily bad. There are lots of ways to get a point across and it's important to listen carefully. RJC is capable of all sorts of amazing things and should not be limited by my own fears. And most important of all - letting go (just a bit) is a good thing. Hardest lesson yet and still working on that one.
21. The start of the future.
Saturday, June 1, 2013
Almost 21 and Reflections on the Future
I generally look at the bright side of things. It drives some of my closest friends crazy. This post, however, is about the reality of the future for my gal, RJC, and I apologize ahead of time for the less than perky attitude I have about this. I considered not writing it. I've tried to be careful of the feelings of people reading this, especially those with younger children. It's really important to me to keep positive and look at all the awesomeness of having my RJC in our lives. Yet when I started this blogging adventure I promised myself that I would stay genuine and include the ups and downs of our lives. If that included showing myself in a less-than-really-good light, so be it. I would be honest. This is where I am now...so I am sharing.
This month RJC turns 21. The 11th of this month actually. I started this blog last August when I was just considering what life would be with a 21 year old child with autism. No more mandated services. No more school. I was wondering what I'd find and how things would be for her. It's been quite the year. I've learned alot about "The Adult System" yet still do not feel like I can comfortably navigate through it and be the best advocate for my girl. I've learned alot about myself. Not all positive. I've learned alot about my RJC. Always interesting and always complicated. In fact, the overall lesson of this year is that life with RJC is, and always will be, interesting and complicated. It's finding a sense of peace with this fact that is the challenge. And right now I am soooo losing that challenge.
When I think about her long-term future - ten, twenty, thirty years down the road and more - I find it so terrifying that I literally become ill. Having seen what I've seen and spoken to other parents whose children are already in The System, I cannot imagine what her quality of life will be. It worries me that at some point she will need to find her way without me and I am concerned that I've not prepared her for that. We are making small steps toward this, I suppose, with the two weekends away and the planned two weeks away at camp this summer. She doesn't know about those two weeks since separation from me causes such high anxiety for her that it's not fair to upset her this early. Not to mention the fact that I have my own anxiety around other people caring for her. Even so, temporary vs. permanent - a whole different ballgame. How do we really, really prepare her for a more permanent separation? I think about it. I consider it. I agonize over it. I wake in the middle of the night and am sick over it. Literally. Yet I've got nothing. I don't like to discuss it if I can help it, even with my husband or closest friends, as it is such an emotionally raw issue for me that I can barely have a conversation without becoming extremely emotional. I am not rational or practical about this issue. I am concerned that I am being selfish and only thinking of myself when I decide to play the turtle and not deal with this issue. I push it off, telling myself we have plenty of time. It feels morbid and somehow unlucky to consider the thought that something will happen "prematurely." On the other hand, I feel incredibly irresponsible in not making a long-term plan now, so that she is prepared. It's quite the quandry.
Thinking long term is an emotional and complicated process. I have at least come to one certain conclusion. There is no "right" or "wrong" way. Everybody deals with the issue in their own time, in their own way, with their own child's needs being the most important consideration. Truly, I have never met a "selfish" parent of a special needs child. I have heard parents speak only with passion and concern about their child and how difficult it is to make decisions concerning their child's future. I've never spoken to one single parent who did not, very carefully, consider every angle about their child's well being - emotional and physical - when it comes to makind decions about their child . They did not consider their own needs but only the needs of their child. How awesome. I have learned from them and have been grateful to them for leading the way.
That having been said, why is this so hard? What I've learned in this past year, up close and personal, is that there are limited options because we are limited by resources. I knew this before but I was so focused on getting us through the school years that I had not spent any time really researching the adult word. Now, with my gal on the brink of being thrown into that world, the reality is setting in. It makes me sad. And it makes me mad.
These decisions would be so much easier - or at least less gut wrenching - if there were programs available that supported whole familes. If there were a recognition that this is not about one person, but about a family dynamic. Adult programs that would include parents in their children's lives on a daily basis, while working to help the child gain their independence, allowing the parent to slowly get a sense of peace around not being the primary caretaker on a minute-by-minute, day-to-day basis. Where there is a slow process of separation for the benefit of all family members' mental health. What a concept. From what I've seen, it does not exist.
I daydream that we will be able to develop a program for RJC and her friends. I can picture it. I see a big farm with horses (she loves riding and it getting quite good at chores) and a greenhouse, small cottages surrounding the area that are quaint yet spacious for the residents. A guest house for when people want to visit. Perhaps a small bed and breakfast that the residents can help to run. She chooses work based on her ability and her preference. I picture a community area where everyone eats their meals together, planned by a licensed nutritionist who understands the complicated issues around food choices. There is an indoor swimming pool complete with a hot tub (her favorite), snack bar with healthy choices, ping pong tables, table games to choose from, a reading area with plenty of picture books, a computer lab, and a music area. There is a sensory room. The staff are well paid, have excellent benefits, and are motivated to work with my gal and her friends by their passion for helping people fulfill their potential. Various therapists are available - speech therapy, OT, PT. There are classes for those who want to continue making academic progress and classes focused on life skills. Caring and trained medical and dental staff are there on at least a monthly basis and at other times they are accessible when needed. Visiting artists run workshops. I see vans that take her and her friends into town so they can enjoy the movies, going out to eat, shopping, getting exercise, and participate in community events.
Then reality sets in because unless we win the lottery (with a very big jackpot) we have limited options for her future.
I do not know what will be. On the positive side, she has a day program to start after her graduation and I am very happy with that choice. It will be an adjustment but we can do this. It's the type of adjustment that will be somewhat tricky but definitely attainable. It will have its ups and downs, no doubt, but this one transition is in our realm of capabilities.
For the longer term? I can use some help. Anyone?
This month RJC turns 21. The 11th of this month actually. I started this blog last August when I was just considering what life would be with a 21 year old child with autism. No more mandated services. No more school. I was wondering what I'd find and how things would be for her. It's been quite the year. I've learned alot about "The Adult System" yet still do not feel like I can comfortably navigate through it and be the best advocate for my girl. I've learned alot about myself. Not all positive. I've learned alot about my RJC. Always interesting and always complicated. In fact, the overall lesson of this year is that life with RJC is, and always will be, interesting and complicated. It's finding a sense of peace with this fact that is the challenge. And right now I am soooo losing that challenge.
When I think about her long-term future - ten, twenty, thirty years down the road and more - I find it so terrifying that I literally become ill. Having seen what I've seen and spoken to other parents whose children are already in The System, I cannot imagine what her quality of life will be. It worries me that at some point she will need to find her way without me and I am concerned that I've not prepared her for that. We are making small steps toward this, I suppose, with the two weekends away and the planned two weeks away at camp this summer. She doesn't know about those two weeks since separation from me causes such high anxiety for her that it's not fair to upset her this early. Not to mention the fact that I have my own anxiety around other people caring for her. Even so, temporary vs. permanent - a whole different ballgame. How do we really, really prepare her for a more permanent separation? I think about it. I consider it. I agonize over it. I wake in the middle of the night and am sick over it. Literally. Yet I've got nothing. I don't like to discuss it if I can help it, even with my husband or closest friends, as it is such an emotionally raw issue for me that I can barely have a conversation without becoming extremely emotional. I am not rational or practical about this issue. I am concerned that I am being selfish and only thinking of myself when I decide to play the turtle and not deal with this issue. I push it off, telling myself we have plenty of time. It feels morbid and somehow unlucky to consider the thought that something will happen "prematurely." On the other hand, I feel incredibly irresponsible in not making a long-term plan now, so that she is prepared. It's quite the quandry.
Thinking long term is an emotional and complicated process. I have at least come to one certain conclusion. There is no "right" or "wrong" way. Everybody deals with the issue in their own time, in their own way, with their own child's needs being the most important consideration. Truly, I have never met a "selfish" parent of a special needs child. I have heard parents speak only with passion and concern about their child and how difficult it is to make decisions concerning their child's future. I've never spoken to one single parent who did not, very carefully, consider every angle about their child's well being - emotional and physical - when it comes to makind decions about their child . They did not consider their own needs but only the needs of their child. How awesome. I have learned from them and have been grateful to them for leading the way.
That having been said, why is this so hard? What I've learned in this past year, up close and personal, is that there are limited options because we are limited by resources. I knew this before but I was so focused on getting us through the school years that I had not spent any time really researching the adult word. Now, with my gal on the brink of being thrown into that world, the reality is setting in. It makes me sad. And it makes me mad.
These decisions would be so much easier - or at least less gut wrenching - if there were programs available that supported whole familes. If there were a recognition that this is not about one person, but about a family dynamic. Adult programs that would include parents in their children's lives on a daily basis, while working to help the child gain their independence, allowing the parent to slowly get a sense of peace around not being the primary caretaker on a minute-by-minute, day-to-day basis. Where there is a slow process of separation for the benefit of all family members' mental health. What a concept. From what I've seen, it does not exist.
I daydream that we will be able to develop a program for RJC and her friends. I can picture it. I see a big farm with horses (she loves riding and it getting quite good at chores) and a greenhouse, small cottages surrounding the area that are quaint yet spacious for the residents. A guest house for when people want to visit. Perhaps a small bed and breakfast that the residents can help to run. She chooses work based on her ability and her preference. I picture a community area where everyone eats their meals together, planned by a licensed nutritionist who understands the complicated issues around food choices. There is an indoor swimming pool complete with a hot tub (her favorite), snack bar with healthy choices, ping pong tables, table games to choose from, a reading area with plenty of picture books, a computer lab, and a music area. There is a sensory room. The staff are well paid, have excellent benefits, and are motivated to work with my gal and her friends by their passion for helping people fulfill their potential. Various therapists are available - speech therapy, OT, PT. There are classes for those who want to continue making academic progress and classes focused on life skills. Caring and trained medical and dental staff are there on at least a monthly basis and at other times they are accessible when needed. Visiting artists run workshops. I see vans that take her and her friends into town so they can enjoy the movies, going out to eat, shopping, getting exercise, and participate in community events.
Then reality sets in because unless we win the lottery (with a very big jackpot) we have limited options for her future.
I do not know what will be. On the positive side, she has a day program to start after her graduation and I am very happy with that choice. It will be an adjustment but we can do this. It's the type of adjustment that will be somewhat tricky but definitely attainable. It will have its ups and downs, no doubt, but this one transition is in our realm of capabilities.
For the longer term? I can use some help. Anyone?
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