Today I grieve with and for a friend. I knew her when she was single. I knew her when she met, dated and fell in love with the man that is now her husband. We shared the joy of her pregnancy and the birth of her precious, beautiful baby boy. Now, we share the piece of genetic information that will change their lives. It will change the way they see the past, present and future. This new information has thrust them into a world that was never even on their path of life. Like a sharp swerve made on a road to avoid a car accident. The smooth, comforting, safe path that their lives used to follow is forever gone. Now, their life is occupied with support groups, treatments and interventions. I wonder if they will ever ask themselves the question, "What if we had never known?" Many families diagnosed with their sons fate never know until a situation occurs that exposes its ugly head. It forces the old doors that I had long ago closed in my memory to fling wide open.
That faithful day back in 1991 when we received our diagnosis. It forever changed how we view the past, present and future of ourselves, our children and our family. It forced me to question the way I thought about myself. It has tried my patience and my knowledge of all things that I held dear. It has tried the sanctity of marriage to the end of its thresehold. But, I have also learned.
Often, I have learned more than I ever cared to learn. I've learned about things that I never would have otherwise become an expert in. I have obtained life-long friends that I never would have met in that "other world". I have been humbled by the caring and kindness of others. To me, it's like a precious gift that I have received. A gift that was wrapped carefully in tissue and fitted with styrofoam like a fragile piece of art. As I peer into the box I cannot see all of it and I am constantly discovering new facets of the gift. I feel as if I am somehow priviledged and unique to have received it. I feel special. I show it to a stranger in the grocery store that quickly turns to me and says, "What is it???" There is no way to really share the gift. It's characteristics can only be learned by living with it. It cannot be taught in a book. I wonder if Dr. Randi Hagerman ever knew how this small piece of genetic information would change and shape our life when she revealed it? Was I happy when I first got it? No. But, today I am thankful for knowing.
Sunday, April 22, 2012
Sunday, March 18, 2012
Getting Ready-Step 1
It can be really difficult for couples with children that have a disability to get away on their own. That holds true for us too. But....we have been the priviledged recipients of a 5-day all-expense-paid trip, therefore, we must rise to the occasion! This is no light task! Luckily, we knew about the trip well in advance--6 months to be exact. This is good because it gives me time to gather my thoughts, analyze my worries (I'm very analytical) and to get prepared. So, as with all things, I started with making some notes. I decided to create an IEP just for me. I am not a huge fan of the IEP process, but it helps me get my thoughts in order and to give myself a timeline for getting it done. It also allows me to break down the process into smaller pieces. I need that.
First, I decided that one of the funniest, but most important things we can do for ourselves is to take care of as much in advance so that we can avoid using all of our cell phone roaming minutes. The destination is out of the country, therefore, it is bound to be quite expensive to use the cell phone. Therefore, it must be avoided if at all possible. We will use Skype once daily to check up on things and avoid the cost of minute-by-minute updates. Good first goal. I don't think it's necessary to give a timeline--only to know that this is a goal. It's all in good humor anyway.
Secondly, in order to remain sane, we need to choose WHO will be caring for our boys while we are away. This is really a big one and something that needs to be decided quickly! We haven't taken a trip alone in over 10 years, and things are a lot different when it comes to the day-to-day care of the boys. This includes the showering process, which fortunately, we have been working on for some years. I may have to write a blog just on showering--someday. We are very lucky to know 2 lovely ladies that have spent a significant amount of time with the boys, so we decide that is a perfect match. Now to implement the actual schedule for care. I decided that we needed 2 practice sessions before the big departure for the trip. We had a meeting with our caregivers and they agreed. Our first practice session would be an overnight session while the 2 of us attended a wedding in town. We would stay at a hotel close by, but still stay away. The second practice session would actually be while we are at home. The reason we chose this method is so that we could be present while they practiced the schedule and all of its details. The first time away would give them time to see what small things needed more work or answers. As you know, if you've read any of my other blogs, a consistent schedule is highly important for our boys. We have spent years of energy implementing it, and the boys have spent years learning to trust it.
Step 1 in the overall process--So, for the first weekend away, here is how I began the process of developing a schedule:
First, I typed up a quick list of the steps that I thought would be used. I based these on items the boys already know and use on a daily basis. I needed to add a few more picture symbols for a few things that were new, like "Bye Mom and Dad" and "Hello Carol and Amanda". These are based on what I know about the things our boys need to know. This can be different for each child. The level of detail is also based on their "thresehold" or how much they can manage to take in ahead of time. Also, what is motivating to them. Here is a quick glance at what my list looks like:
After I had the list, I gathered my supplies. I always have a spare blank "All Done" sheet ready to go. Here's what it looks like:
This sheet is legal sized and laminated with velcro strips (I use the scratchy part on the blanks) applied all the way across in a vertical pattern. Hopefully, this photo demonstrates that clearly.
Next, I go through the picture symbols I already have in my library and start to fill them in where needed on the "All Done" method board. It seems I will need to create a few new symbols in order to complete this schedule. I go to my computer and I open my blank template in my software program called Boardmaker. I have created this template so that I can simply "paste" the picture symbol into a defined square. I use this sized square for almost all of my pic sims.
After I paste my symbols into the squares I "save as" if I want to ever use this set of symbols again. This also avoids saving over my blank template, which I use all the time for different reasons. I probably would not save this one since it's pretty generic. I print the page and here is what it would look like:
Next, I use 2 laminating sheets (I prefer the self adhesive type) and adhere one to the back of the sheet and one to the front. Then, I cut out each square (I like to go a little bit outside of the line so that the lines are still visible but this is not necessary). I turn over each square and adhere a velcro dot (I now use the soft side so it will stick to the scratchy side already on the "All Done" method). Now I have all of the picture symbols I need to complete my schedule for this occasion. Here is what the schedule will look like. I need one for the day we depart, and I also need another one for the next day when we return. Otherwise, the board becomes too crowded.
Weekend Away Day 1 Weekend Away Day 2
You may have noticed that some of the pictured items are not familiar to strangers "outside of the box", but that is intentional. Every family has their words that describe something personal, like a "blankie", or certain toy. We are no different. You may have also noticed that I only showed a toilet once. That is also intentional. This is the only time of day (the morning) when the boys need a visual reminder to use the toilet. It is not optional at this time of day for obvious reasons, but they are pretty good at self-regulating the rest of the time. I do use the toilet symbol when we are practicing something new, especially when it's in a new location and they might not be familiar with the environment or where the bathroom is. In this case, they certainly know. Also, I have learned many things about our schedule over the years. Some are difficult to even pinpoint. As I was developing a schedule I learned that I only need to use pic sims for things that are certain. This schedule does not account for every minute of the day. The boys only WANT to know what is certain. I believe this is why they trust it so much. So, if there was a time when they wanted to color or do a craft, I might leave that out because it's not certain or specific. Also, I would not attempt to make a trip to the grocery store without including it (because it's a transition) because this is something they NEED to know ahead of time (I know this about my boys). But, if it is something that they NEED to do, or they need to do it at a certain time of day in order to achieve a goal, then I would include it. Hopefully, this makes sense. The pictures that I've used give guidance and give specific items that they are familiar with (or sometimes not) and that they find comforting and certain.
Well, wish us luck! I have faith that everything will go off without a hitch! I plan to update this blog as we round' the corner to the second step and eventually off on our romantic get-away! That's the goal after all!!!
UPDATE:
The first overnight went really well. We made it out the door and into the car without any provocation! Yippee!! The ladies knew exactly what to do and there were no issues (unless you count the difficulty with electronics as a problem). We made sure to have them write down any questions they came across so that we could answer them when we returned. Overall, there were no huge questions, and all was smooth sailing! Cannot wait for trial #2!!
First, I decided that one of the funniest, but most important things we can do for ourselves is to take care of as much in advance so that we can avoid using all of our cell phone roaming minutes. The destination is out of the country, therefore, it is bound to be quite expensive to use the cell phone. Therefore, it must be avoided if at all possible. We will use Skype once daily to check up on things and avoid the cost of minute-by-minute updates. Good first goal. I don't think it's necessary to give a timeline--only to know that this is a goal. It's all in good humor anyway.
Secondly, in order to remain sane, we need to choose WHO will be caring for our boys while we are away. This is really a big one and something that needs to be decided quickly! We haven't taken a trip alone in over 10 years, and things are a lot different when it comes to the day-to-day care of the boys. This includes the showering process, which fortunately, we have been working on for some years. I may have to write a blog just on showering--someday. We are very lucky to know 2 lovely ladies that have spent a significant amount of time with the boys, so we decide that is a perfect match. Now to implement the actual schedule for care. I decided that we needed 2 practice sessions before the big departure for the trip. We had a meeting with our caregivers and they agreed. Our first practice session would be an overnight session while the 2 of us attended a wedding in town. We would stay at a hotel close by, but still stay away. The second practice session would actually be while we are at home. The reason we chose this method is so that we could be present while they practiced the schedule and all of its details. The first time away would give them time to see what small things needed more work or answers. As you know, if you've read any of my other blogs, a consistent schedule is highly important for our boys. We have spent years of energy implementing it, and the boys have spent years learning to trust it.
Step 1 in the overall process--So, for the first weekend away, here is how I began the process of developing a schedule:
First, I typed up a quick list of the steps that I thought would be used. I based these on items the boys already know and use on a daily basis. I needed to add a few more picture symbols for a few things that were new, like "Bye Mom and Dad" and "Hello Carol and Amanda". These are based on what I know about the things our boys need to know. This can be different for each child. The level of detail is also based on their "thresehold" or how much they can manage to take in ahead of time. Also, what is motivating to them. Here is a quick glance at what my list looks like:
- Wake up
- Toilet
- Breakfast
- Pills
- Get dressed
- Computer/tv
- Lunch
- Shower
- Get dressed
- Bye mom and dad
- Hello carol and Amanda
- Computer/tv
- Snack
- Trade
- Dinner
- Jammies on
- Tv/movie
- Weighted blanket time
- Fruit smoothie
- Pills
- Bed
- Wake up
- Toilet
- Breakfast
- Pills
- Get Dressed
- Computer/tv
- Hello Mom and Dad
- Bye Carol and Amanda
- Lunch
- Computer/tv
- Trade
- Set Table
- Dinner
- Shower
- Weighted blanket time
- Fruit Smoothie
- Pills
- Bed
This sheet is legal sized and laminated with velcro strips (I use the scratchy part on the blanks) applied all the way across in a vertical pattern. Hopefully, this photo demonstrates that clearly.
Next, I go through the picture symbols I already have in my library and start to fill them in where needed on the "All Done" method board. It seems I will need to create a few new symbols in order to complete this schedule. I go to my computer and I open my blank template in my software program called Boardmaker. I have created this template so that I can simply "paste" the picture symbol into a defined square. I use this sized square for almost all of my pic sims.
Next, I use 2 laminating sheets (I prefer the self adhesive type) and adhere one to the back of the sheet and one to the front. Then, I cut out each square (I like to go a little bit outside of the line so that the lines are still visible but this is not necessary). I turn over each square and adhere a velcro dot (I now use the soft side so it will stick to the scratchy side already on the "All Done" method). Now I have all of the picture symbols I need to complete my schedule for this occasion. Here is what the schedule will look like. I need one for the day we depart, and I also need another one for the next day when we return. Otherwise, the board becomes too crowded.
Weekend Away Day 1 Weekend Away Day 2
You may have noticed that some of the pictured items are not familiar to strangers "outside of the box", but that is intentional. Every family has their words that describe something personal, like a "blankie", or certain toy. We are no different. You may have also noticed that I only showed a toilet once. That is also intentional. This is the only time of day (the morning) when the boys need a visual reminder to use the toilet. It is not optional at this time of day for obvious reasons, but they are pretty good at self-regulating the rest of the time. I do use the toilet symbol when we are practicing something new, especially when it's in a new location and they might not be familiar with the environment or where the bathroom is. In this case, they certainly know. Also, I have learned many things about our schedule over the years. Some are difficult to even pinpoint. As I was developing a schedule I learned that I only need to use pic sims for things that are certain. This schedule does not account for every minute of the day. The boys only WANT to know what is certain. I believe this is why they trust it so much. So, if there was a time when they wanted to color or do a craft, I might leave that out because it's not certain or specific. Also, I would not attempt to make a trip to the grocery store without including it (because it's a transition) because this is something they NEED to know ahead of time (I know this about my boys). But, if it is something that they NEED to do, or they need to do it at a certain time of day in order to achieve a goal, then I would include it. Hopefully, this makes sense. The pictures that I've used give guidance and give specific items that they are familiar with (or sometimes not) and that they find comforting and certain.
Well, wish us luck! I have faith that everything will go off without a hitch! I plan to update this blog as we round' the corner to the second step and eventually off on our romantic get-away! That's the goal after all!!!
UPDATE:
The first overnight went really well. We made it out the door and into the car without any provocation! Yippee!! The ladies knew exactly what to do and there were no issues (unless you count the difficulty with electronics as a problem). We made sure to have them write down any questions they came across so that we could answer them when we returned. Overall, there were no huge questions, and all was smooth sailing! Cannot wait for trial #2!!
Tuesday, January 17, 2012
Thinking About the Future
Other families often ask me what the future looks like for us and our boys. There are many things that I think about when I think about the future with my boys.
-What would happen if something happened to my husband and I?
-What do we want the future of the boys to look like, period?
-How can we influence changes now that will positively affect their future?
-What about financial obligations and benefits for the boys as they age?
These are huge questions, and they warrant huge answers. We approached them one at a time. The first several years of the boys lives were filled with a lot of anxiety on our part, and uncertainties. There were numerous nights with little or no sleep. One reason the sand man would not grace us with a restful night was the fact that we worried about "unknowns". One of those was, what would happen to the boys if something happened to us? Well, after many years of worrying about it, we decided to do something about it.
In all honesty, the whole idea of doing a Will stemmed from an invitation for me to speak in Paris, France. What an opportunity! My husband wanted to go, but could not face the idea of leaving the boys. We talked about it and decided that some resolution could be achieved by doing a full Will and Trust. We researched and asked other families about an attorney in our area. Soon after, we met with the attorney. He asked us to complete a full packet of homework, including naming who would be the boys' guardian and who would be the trustee. The best piece of advice that this attorney gave us was "This is modeled using information from today. Do not think about 10 years from now because we can always modify the document later on. Complete the information based on what you know today." This was VERY helpful information for me because all I worried about was later! How could we possibly predict the future? We couldn't! In the end, we created a Will to take care of our immediate issues, then we created a Special Needs Trust that would protect the boys' benefits offered by the State. Naming a trustee puts any materials or financial posessions in the trust and not in the boys' names. The trustee is responsible for alloting money to requested things, and keeping track of financial assets. We could have named a bank or other institution, but we personally named a group of 4 people in succession (if one has passed away by the time it's needed, then it moves to the next person). Then we named a Guardian. This person would be responsible for the day-to-day care of the boys. It doesn't mean they have to be the one to do the hands-on care, but they are in charge of whoever does. We decided to also follow the 4-person structure for that responsibility. We obtained permission from each and every person named, and made sure they felt comfortable with this responsiblity.
One fairly unusual thing that we also did all those years ago, was to decide that our current house would be home-base for the guys. When we learned that there is a waiting list of more than 18,000 people in the State of Colorado for housing options, we knew we had to do something independent of that. So, we made the house part of the Trust. Over the past 20 years we have worked little by little to develop a list of physical things that we needed to modify in the house, and we've plugged away at making those changes. Today, we still have a list, but it's much shorter. As the boys grow we are more able to see how they use each space and to know what they are capable of doing on their own. It is also more clear now on what things they will need assistance with. This has really helped with detailing their adult plans to fit their needs.
Most recently, we installed a fence around the entire property with a key-code lock. This lock can be uploaded to a laptop and one can see who is coming and going according to individual PIN numbers assigned to every person. This will be especially helpful when we are not in the home anymore. From a remote location I can log in and see the activity into and out of the house. Another nice thing we did was to install a thermostat controlled water heater. The controls are in the main bathroom so that whomever is doing the "setting up" for shower time can adjust the water temperature to one son or the others' preferences. We have made numerous other changes. It is our hope that when we retire, we can phase out of the environment and another person or persons will phase in.
All of these decisions were difficult. All of them were full of worry. But, in the end it has allowed us as parents to sleep well knowing that, no matter what, the boys will have a place to call home and the means to live there. Being proactive is so empowering!!! Here's to a good nights' sleep!!!!
-What would happen if something happened to my husband and I?
-What do we want the future of the boys to look like, period?
-How can we influence changes now that will positively affect their future?
-What about financial obligations and benefits for the boys as they age?
These are huge questions, and they warrant huge answers. We approached them one at a time. The first several years of the boys lives were filled with a lot of anxiety on our part, and uncertainties. There were numerous nights with little or no sleep. One reason the sand man would not grace us with a restful night was the fact that we worried about "unknowns". One of those was, what would happen to the boys if something happened to us? Well, after many years of worrying about it, we decided to do something about it.
In all honesty, the whole idea of doing a Will stemmed from an invitation for me to speak in Paris, France. What an opportunity! My husband wanted to go, but could not face the idea of leaving the boys. We talked about it and decided that some resolution could be achieved by doing a full Will and Trust. We researched and asked other families about an attorney in our area. Soon after, we met with the attorney. He asked us to complete a full packet of homework, including naming who would be the boys' guardian and who would be the trustee. The best piece of advice that this attorney gave us was "This is modeled using information from today. Do not think about 10 years from now because we can always modify the document later on. Complete the information based on what you know today." This was VERY helpful information for me because all I worried about was later! How could we possibly predict the future? We couldn't! In the end, we created a Will to take care of our immediate issues, then we created a Special Needs Trust that would protect the boys' benefits offered by the State. Naming a trustee puts any materials or financial posessions in the trust and not in the boys' names. The trustee is responsible for alloting money to requested things, and keeping track of financial assets. We could have named a bank or other institution, but we personally named a group of 4 people in succession (if one has passed away by the time it's needed, then it moves to the next person). Then we named a Guardian. This person would be responsible for the day-to-day care of the boys. It doesn't mean they have to be the one to do the hands-on care, but they are in charge of whoever does. We decided to also follow the 4-person structure for that responsibility. We obtained permission from each and every person named, and made sure they felt comfortable with this responsiblity.
One fairly unusual thing that we also did all those years ago, was to decide that our current house would be home-base for the guys. When we learned that there is a waiting list of more than 18,000 people in the State of Colorado for housing options, we knew we had to do something independent of that. So, we made the house part of the Trust. Over the past 20 years we have worked little by little to develop a list of physical things that we needed to modify in the house, and we've plugged away at making those changes. Today, we still have a list, but it's much shorter. As the boys grow we are more able to see how they use each space and to know what they are capable of doing on their own. It is also more clear now on what things they will need assistance with. This has really helped with detailing their adult plans to fit their needs.
Most recently, we installed a fence around the entire property with a key-code lock. This lock can be uploaded to a laptop and one can see who is coming and going according to individual PIN numbers assigned to every person. This will be especially helpful when we are not in the home anymore. From a remote location I can log in and see the activity into and out of the house. Another nice thing we did was to install a thermostat controlled water heater. The controls are in the main bathroom so that whomever is doing the "setting up" for shower time can adjust the water temperature to one son or the others' preferences. We have made numerous other changes. It is our hope that when we retire, we can phase out of the environment and another person or persons will phase in.
All of these decisions were difficult. All of them were full of worry. But, in the end it has allowed us as parents to sleep well knowing that, no matter what, the boys will have a place to call home and the means to live there. Being proactive is so empowering!!! Here's to a good nights' sleep!!!!
Tuesday, November 29, 2011
"Rocket" on Vacation
I have blogged before about our boys’ love of “Rocket”, our RV, several times. As we head home today after 3 weeks of vacation in “Rocket”, it’s only natural to think about how far the boys have come.
Many families I know have a weekend cabin or getaway spot on the beach. Some even rent a place each year as a tradition. As a child, we never had the means to do such a thing as take a vacation. Of course, we didn’t have 2 kids with Fragile X either.
When the boys were young we tried several different things in an effort to have some kind of vacation. We rented a cabin at a dude ranch in Colorado. We ended up going home after 3 days because Jake wouldn’t eat. The following year, we spent a wad of money taking the boys to a week-long therapy camp. It was helpful, but certainly not a vacation for anyone. After that, we were thrust into the world of camping. I wrote about our first camping adventure in an earlier blog.
We’ve really tried to make a priority of taking at least one journey in “Rocket” a year. This year, we decided to re-visit Texas, and then proceed to Arizona for Thanksgiving with the family. We spent the first 2 days just getting out of Colorado and into central Texas. We had been to Texas before, but it seems we missed a few places in our initial visit. We took the time to really take in the scenery this time, which in western Texas, is a bit boring to us coming from scenic Colorado.
From the time we departed, the boys were in their splendor. They each had their comforts of home, and their personal entertainment devices. I had carefully prepared their visual calendar to include “driving days”, “amusements”, and “visits” with various people. This helps keep them motivated and centered. Then, I brought along my library of PECS (picture exchange communication system) and “all done” board. Each day I prepared the program for the day.
We arrived in Austin early on the 3rd day, in time to have dinner at one of the “DDD” places on our wish list. I noticed right away that the weather was already so much milder than home. I liked that. The rolling hills and chirping birds were everywhere! One day we drove through town, and then finished off with a late lunch at another “DDD” barbeque joint. Another day, we ventured into downtown to see the Capital building and take a long walk in the beautiful park that surrounded it. Everything was already decorated for the holidays. One morning, we drove the 25 miles to visit a donut shop we had seen on tv. It was delicious! We even managed to pick out some tasty sausages at a Cajun Deli we had seen along the way. Those babies are in the freezer for sharing when we get home.
Next we headed south toward Galveston Island. We had been here once before, but since it was shortly after hurricane “Ike”, there were no campgrounds on the island. Most of that was rebuilt when we arrived this time. In fact, we were pleasantly surprised at the cleanliness and charm of the entire area. The anticipation of an impending lunch with another family also held my interest at its peak level! The first night, we drove several miles back across the island to the mainland area to eat at a “DDD” spot known for its steak. They had something to please every palate.
Before we got to the restaurant, I made my usual call to gauge the crowd or wait time. We like to eat early to avoid the crowd, and this time was no exception. We arrived at the restaurant completely prepared, with backpacks and diversion/wait devices. Joe was especially engaged because there was a young man that reminded him of a friend back home. It was cute to see him make this association. I am reminded of the many times when the boys were young, when they ate a restaurant meal in 15 minutes flat, and we left with boxes filled with our meals to take home. The boys would manage to eat theirs, but our time was spent getting them ready, making sure they were cleaned up, and then leaving. I am so proud that these days are gone. Both boys are able to wait a substantial amount of time for our meals.
The next day we had a special treat awaiting us. Facebook has been such a wonderful meeting place and outlet for me and many others. I became acquainted with a very nice Mom of 2 young boys that lived in the Galveston area. She invited us to have lunch with her family. We agreed to meet at a famous hamburger joint. I prepared the daily schedule as usual, including a symbol for “friends”, and “say hello to friends”. This should do it. We arrived at the restaurant without a hitch. We enjoyed a lovely meal and conversation. After lunch, we were treated to a local tour of the area, and then we ended up back at “Rocket” so the boys could all have some down time. I think everyone enjoyed themselves. I certainly did! It’s always a treat for me to meet new families and learn their story and their joys. It was really special to have a local family share their time with us.
We headed back north toward San Antonio. As we drove, I took in the whole environment. It is very relaxed, and quite predictable. Even though we are moving from place to place, there are many things that remain the same. The environment inside of “Rocket” is stable. The routine tasks we do every day are the same. The people and dogs are the same. I believe this has a huge effect on the comfort level and adaptability of Jake and Joe. It also attributes to the success of every visit. I think about what a blessing it is.
We had also been to San Antonio before, and really enjoyed it. We felt it was worthy of a second visit. There are many things to see in San Antonio. I was also looking forward to a special dinner with the families from the area. I knew several of them from Facebook, but looked forward to meeting some new friends. We spent the first few days visiting several “DDD” spots, as well as the Riverwalk, shopping and historic sites. The boys were very relaxed, which made sense due to the lack of demands on them. It was completely different from our home routine, and their work schedule. The level of hyperarousal was easily controlled. We still practice a routine of “up” and “down” times when we are on the road. We also stick closely to our sleep routine and allow for time zone changes with meals and medications. This makes transitions (there are many when we travel) to be very manageable. Having a home base in “Rocket” makes it all very easy too.
Before our dinner with families, I contacted the restaurant to check on menu items and crowd level. One of the ladies from the group had made a reservation, which was great. We arrived, and everyone said “Hello”, and sat down. It was a fun evening full of laughs, sharing and good food. It was a real treat for our entire family to have this kind of welcome. Chris especially enjoyed being able to talk with another Dad. It will be a special memory forever.
The next stop would be to see family in Arizona. Two long days of crossing west Texas and southern Arizona were quite boring. The result would be well worth is though. We arrived at our usual RV Park and got settled in. In preparation for dinner that night, I had the boys view a video I had taken of going into Grandma and Grandpa’s house, saying hello, then getting settled into their “spot”. There was literally no anxiety at all when watching the video. They’ve become very used to this method of preparation. I was glad to have it! We got to their house, the boys said hello (even gave hugs), went in and got settled. We followed this same routine for several days in a row, which made it so pleasant for the entire family. On about the 3rd day, we made a visit to my sister’s house. The boys had only been there once before. The visit was short, but successful. We had brought all of their personal devices and made sure there would be a “spot” for them. When we had the huge family get-together there on Thanksgiving Day, the comfort level was even more evident. It all went off without a hitch.
I often have to remind myself that a lot of hard work has gone into making the boys’ success a reality. Each methodical action that we’ve put into place is now routine for us. But, without them, we would quickly be reminded how important they are. Having a different routine when we travel is important. Having a schedule with us, no matter where we go is essential. Using technology whenever possible is a bonus. Having “Rocket” to guide us and help us stay grounded is everything.
Many families I know have a weekend cabin or getaway spot on the beach. Some even rent a place each year as a tradition. As a child, we never had the means to do such a thing as take a vacation. Of course, we didn’t have 2 kids with Fragile X either.
When the boys were young we tried several different things in an effort to have some kind of vacation. We rented a cabin at a dude ranch in Colorado. We ended up going home after 3 days because Jake wouldn’t eat. The following year, we spent a wad of money taking the boys to a week-long therapy camp. It was helpful, but certainly not a vacation for anyone. After that, we were thrust into the world of camping. I wrote about our first camping adventure in an earlier blog.
We’ve really tried to make a priority of taking at least one journey in “Rocket” a year. This year, we decided to re-visit Texas, and then proceed to Arizona for Thanksgiving with the family. We spent the first 2 days just getting out of Colorado and into central Texas. We had been to Texas before, but it seems we missed a few places in our initial visit. We took the time to really take in the scenery this time, which in western Texas, is a bit boring to us coming from scenic Colorado.
From the time we departed, the boys were in their splendor. They each had their comforts of home, and their personal entertainment devices. I had carefully prepared their visual calendar to include “driving days”, “amusements”, and “visits” with various people. This helps keep them motivated and centered. Then, I brought along my library of PECS (picture exchange communication system) and “all done” board. Each day I prepared the program for the day.
We arrived in Austin early on the 3rd day, in time to have dinner at one of the “DDD” places on our wish list. I noticed right away that the weather was already so much milder than home. I liked that. The rolling hills and chirping birds were everywhere! One day we drove through town, and then finished off with a late lunch at another “DDD” barbeque joint. Another day, we ventured into downtown to see the Capital building and take a long walk in the beautiful park that surrounded it. Everything was already decorated for the holidays. One morning, we drove the 25 miles to visit a donut shop we had seen on tv. It was delicious! We even managed to pick out some tasty sausages at a Cajun Deli we had seen along the way. Those babies are in the freezer for sharing when we get home.
Next we headed south toward Galveston Island. We had been here once before, but since it was shortly after hurricane “Ike”, there were no campgrounds on the island. Most of that was rebuilt when we arrived this time. In fact, we were pleasantly surprised at the cleanliness and charm of the entire area. The anticipation of an impending lunch with another family also held my interest at its peak level! The first night, we drove several miles back across the island to the mainland area to eat at a “DDD” spot known for its steak. They had something to please every palate.
Before we got to the restaurant, I made my usual call to gauge the crowd or wait time. We like to eat early to avoid the crowd, and this time was no exception. We arrived at the restaurant completely prepared, with backpacks and diversion/wait devices. Joe was especially engaged because there was a young man that reminded him of a friend back home. It was cute to see him make this association. I am reminded of the many times when the boys were young, when they ate a restaurant meal in 15 minutes flat, and we left with boxes filled with our meals to take home. The boys would manage to eat theirs, but our time was spent getting them ready, making sure they were cleaned up, and then leaving. I am so proud that these days are gone. Both boys are able to wait a substantial amount of time for our meals.
The next day we had a special treat awaiting us. Facebook has been such a wonderful meeting place and outlet for me and many others. I became acquainted with a very nice Mom of 2 young boys that lived in the Galveston area. She invited us to have lunch with her family. We agreed to meet at a famous hamburger joint. I prepared the daily schedule as usual, including a symbol for “friends”, and “say hello to friends”. This should do it. We arrived at the restaurant without a hitch. We enjoyed a lovely meal and conversation. After lunch, we were treated to a local tour of the area, and then we ended up back at “Rocket” so the boys could all have some down time. I think everyone enjoyed themselves. I certainly did! It’s always a treat for me to meet new families and learn their story and their joys. It was really special to have a local family share their time with us.
We headed back north toward San Antonio. As we drove, I took in the whole environment. It is very relaxed, and quite predictable. Even though we are moving from place to place, there are many things that remain the same. The environment inside of “Rocket” is stable. The routine tasks we do every day are the same. The people and dogs are the same. I believe this has a huge effect on the comfort level and adaptability of Jake and Joe. It also attributes to the success of every visit. I think about what a blessing it is.
We had also been to San Antonio before, and really enjoyed it. We felt it was worthy of a second visit. There are many things to see in San Antonio. I was also looking forward to a special dinner with the families from the area. I knew several of them from Facebook, but looked forward to meeting some new friends. We spent the first few days visiting several “DDD” spots, as well as the Riverwalk, shopping and historic sites. The boys were very relaxed, which made sense due to the lack of demands on them. It was completely different from our home routine, and their work schedule. The level of hyperarousal was easily controlled. We still practice a routine of “up” and “down” times when we are on the road. We also stick closely to our sleep routine and allow for time zone changes with meals and medications. This makes transitions (there are many when we travel) to be very manageable. Having a home base in “Rocket” makes it all very easy too.
Before our dinner with families, I contacted the restaurant to check on menu items and crowd level. One of the ladies from the group had made a reservation, which was great. We arrived, and everyone said “Hello”, and sat down. It was a fun evening full of laughs, sharing and good food. It was a real treat for our entire family to have this kind of welcome. Chris especially enjoyed being able to talk with another Dad. It will be a special memory forever.
The next stop would be to see family in Arizona. Two long days of crossing west Texas and southern Arizona were quite boring. The result would be well worth is though. We arrived at our usual RV Park and got settled in. In preparation for dinner that night, I had the boys view a video I had taken of going into Grandma and Grandpa’s house, saying hello, then getting settled into their “spot”. There was literally no anxiety at all when watching the video. They’ve become very used to this method of preparation. I was glad to have it! We got to their house, the boys said hello (even gave hugs), went in and got settled. We followed this same routine for several days in a row, which made it so pleasant for the entire family. On about the 3rd day, we made a visit to my sister’s house. The boys had only been there once before. The visit was short, but successful. We had brought all of their personal devices and made sure there would be a “spot” for them. When we had the huge family get-together there on Thanksgiving Day, the comfort level was even more evident. It all went off without a hitch.
I often have to remind myself that a lot of hard work has gone into making the boys’ success a reality. Each methodical action that we’ve put into place is now routine for us. But, without them, we would quickly be reminded how important they are. Having a different routine when we travel is important. Having a schedule with us, no matter where we go is essential. Using technology whenever possible is a bonus. Having “Rocket” to guide us and help us stay grounded is everything.
Sunday, November 20, 2011
Is it the "Happiest Time of the Year"?
Define your best holiday experience.
If I gave this request to each of my friends, the
response would most certainly be different for every single one. For me, the definition has changed
from when I was little to where I am now.
When I was young it meant 2 full weeks with no school,
playing in the snow, and the anticipation of presents. As I got older, it meant having a few
days off work and lots of stress. Now
that I am a parent myself, it means something totally different. I’m not sure what I thought it would
look like, but I am sure I have modified my idea of that vision over time.
When our boys were little, we attempted to mold our
Christmas holiday into what we thought would be the ultimate experience. All of our ideas were based on either
what we ourselves experienced as a child, or the things we wanted to change
about those memories. My
husband’s memories of Christmas were very happy ones filled with day-long
celebrations and family. Not
that every moment was fun-filled, but his overall memories of childhood
Christmases were pleasant. For
me, not so much. I wanted
my own family so I could have the fairy tale. Of course, it isn’t realistic to think
that we really could have the fairy tale, but it was a dream. Society’s idea of a fairy tale
Christmas was riddled with debt, stress and overwhelm. I never thought about those facts….I
just knew I wanted it.
As toddlers, the boys received many gifts—more
than should really be allowed in any household filled with humans. We tried to follow all of the “rules”
when it came to the dinner, the decorations and the family time. We were well on our way to learning
about how to throw a fairy tale holiday celebration. Once we were consumed with the
knowledge of having 2 boys affected with Fragile X Syndrome, all of this
changed.
Our first few Christmases with the boys were spent
attempting to mold them into our ideas. Joe
was not an easy baby, so most of the day was used to try and appease him. Jake was content with spending his
time doing his normal routine. In
fact, the home videos of this timeframe show the true picture. There was not a speck of joy or
elation over new toys or clothes. In
fact, just the opposite. But,
we pressed on. My family
had a tradition of celebrating on Christmas Eve, and because they live out of
State, that meant a blow-by-blow account by telephone. Chris’ family, on the other hand,
lived close by. We spent
Christmas Day with them beginning in the wee hours of the morning through
dinnertime. Conforming to
all of the expectations was exhausting! Attempting
to get a “thank you” out of a child that literally didn’t speak was a challenge. Teaching a child to give hugs when we
spent multiple hours in OT in an effort to overcome sensory issues, was futile. Some things had to change!
A change would require a mind shift from me and Chris. This was going to be tough. To give up my perception of what
Christmas should look like was a loss for me. I cried for my lost dream. For Chris to give up having the same
memories he had as a kid, would be difficult too. Did we want to put our mark in the
sand and continue to fight tooth and nail for our dreams? Or try to make it more of a
positive thing for the boys? That
was the question. I think
we had to try the positive approach. How
would we be able to set some kind of routine based on something we could only
practice once a year? This
would be a challenge.
The anxiety surrounding opening the presents was clear
from the boys’ first Christmas. They
never seemed interested or excited about this task. I decided to try a sort of “tolerance
build-up” approach. I took
a trip to the dollar store and bought 30 $1 nonsense things. They didn’t need to be of super high
interest, but some interest would be good. Food items, small snacks, candy,
slinkies (sensory), chewy things, etc., all hit the basket. I went home and wrapped each one and
placed them in a box. Beginning
on the 9th of December
(15 days before Christmas Eve—don’t ask me how I came up with this) we asked
the boys to pick one item from the box. We
allowed them to wait until they were ready, and then open it. At first we didn’t make a big deal
about it. After a few days,
we started to use a “side dialogue” method to encourage imitation. This involves me and Chris talking to
one another, saying the things we wanted them to mimic. We would say “Thanks, Dad” or “Thanks,
Mom” and giving a “high 5”. I
think we were starting to see improvement in the anxiety department over the
simple task of opening the gifts. After
about 10 days of practice, we were able to achieve the “high 5”, but still no
“Thanks”, which was ok with us. By
the time Christmas Eve arrived, there was little or no anxiety over gifts.
The following year, Chris and I decided to try and
focus more on things the boys liked to do during the holiday rather than push
our idea of it on them. Jake
was always very frightened by the Christmas tree itself. I think the sensation of the tree’s
texture gave him an extreme aversion. Therefore,
he never wanted to help place the decorations on the tree. Joe is so sensitive to everything
around him, that the whole radiation of stress from everyone caused him to
become a seasonal monster. On
numerous occasions we would hear things from the school like “oh, well, we
won’t plan to start any new materials or approaches until after the holidays”,
or “let’s plan to get to that in January”. No wonder Joe was feeling this
stress—it was all around him! His
own home was no exception. Both
boys did seem fascinated by the numerous displays of lights that appeared
everywhere this time of year. We
could see that this was a constant interest area. Even the lights on the tree seemed
interesting, even though we didn’t want to touch them. That seemed to be our ticket!
We had noticed a list of lights displays published in
the newspaper every year, so we looked that up. We planned our path and prepared our
trip. At dark on Christmas
Eve we packed a thermos of hot cocoa, cups, Christmas CDs, blankets and a few
diversions. We all dressed
in our pajamas and loaded ourselves into the car. We traveled around the city taking in
all of the spectacular lights. The
evening was a success. We
headed home and tucked the boys into their beds in preparation for a busy
Christmas Day.
Another obstacle that we faced the following year was
the constant invitations from family to attend parties. Up to this point, we had not had the
best experiences. Chris was
from a very large family and there was a lot of demand. Most were not extremely knowledgeable
about Fragile X, and we didn’t see them often enough to really keep them in the
loop. We decided to have a
pot-luck party at our house, on the boys’ turf. Somewhere in the neighborhood of 50
people came. There were
lots of kids, lots of noise, and lots of food (lots of smells). Overall, it went pretty well. No one cared if Joe ran around his
house with no shirt on—it was his house. No one cared if the boys cried for
some reason—we didn’t either. We
had all we needed right at our fingertips. We learned what to do and what not to
do the following year. Because
we felt like it was important to include family in the boys’ lives, we made it
an annual event for many years to come. As
the family dwindled, we transitioned to an annual party for friends, which has
become an event that we look forward to with anticipation (all of us). The boys’ are involved in the
countdown and the preparations.
As the years have passed by, and our boys have grown
older and more tolerant, things have greatly improved. We have created our own way of “Living
the Fragile X Lifestyle” at Christmastime. We all enjoy taking our Christmas Eve
carriage ride downtown to view the spectacular city lights displays. We don’t have as much family nearby,
so it’s a fairly quiet evening. We
still open gifts from my family and share the experience by telephone. We begin Christmas morning by opening
gifts at a leisurely pace with no pressure. We continue to practice using good
manners with each one. We
share a specially prepared Christmas dinner with a few friends and family. The boys’ even enjoy eating “a special
dinner” in the dining room, with cloth napkins placed on their laps. We’ve learned that a few high interest
gift items are much more meaningful to them than the number of things they open. I have also realized that this time of
year marks time for us. What
I mean is that each year we sit back and say things like “Oh, remember when
Jake was only as tall as the table”, or “remember when they wouldn’t even sit
with us at the dining table”. It’s
a time for reminiscing and for reflecting on how far we’ve come.
Now I know that when I mourned the loss of my dream, I
was really mourning was the loss of society’s dream. My own dream actually came to light. To see our boys enjoying and
participating in what is meaningful to all of us, really does make it the
happiest time of year.
Thursday, October 13, 2011
"The Only Thing We Have to Fear is Fear Itself"
In the early years, a simple visit to the doctors office would have devastating effects. We would go to simply have a well check, or immunization and it would turn in to a long-lasting emotional mark. One meltdown that included tears, physical altercations and embarrassment for me would cause me to have fear so real that I would resort to being isolated in the house for at least 2 days. I would go through the motions of meeting the boys' every need, but they knew it was different. My lingering tears might have been the first clue. They were like Bloodhounds--smelling fear up to 2 miles away. These early years I will call, "Isolation". The effects of this situation would make me want to avoid going to the grocery store with the boys, or even to get gas in the car. In fact, my husband and I still feel as though there is a void in our memory of these years, but unwillingly I can pull up the crumbs if I wish to. I felt personally responsible and like a failure. Why was this happening to me?
As time passed, we still had meltdowns, but I was able to sit back a little bit rather than giving a knee-jerk reaction. It wasn't always productive, but sometimes it was. By this time we had implemented a sensory diet, but we were still very much in the learning stages when it came to knowing what the "triggers" were or how to be more proactive. I call this my "observation" years. For example, when we tried Special Olympics skiing. Jake loved it and moved into a routine very quickly. Joe--not so much. We tried a different strategy each week to no avail. The one thing I learned from this (if there had to be a lesson) is to consider what the priority of an activity is. For skiing, we decided it was not a life skill that had to be loved. The same goes for Joe's disdane for Halloween. It's not important to us that he love Halloween. On the other hand, doctors visits needed to be a part of life, and it would help a lot if they were successful. I had no intention of spending my life suffering through a routine task. I wanted no part of ongoing bite marks on my arms or bloody scratches everywhere else. This had to be mastered.
I decided that a trip to Disney World was also something we needed to find a way to enjoy. The boys have always loved Disney and probably always will. Our first trip was a logistical nightmare. We had no idea that Joe woudl have a severe aversion to riding on the boat that we had to take to get from the campground to Magic Kingdom. Because we were on vacation, I did not have the luxury of "sitting out" for 2 days. It would not be fair. We made some immediate adjustments to get through it. This and other necessary experiences gave me a way to view situations in a more productive way when I was able to analyze the need for doing it. So, we had one bad visit. Is this something we will or need to do again? If so, I had to figure out how to make it successful. In the case of Disney World, I had one tool that I didn't even know I had---photos of happy moments. These will be saved and recorded for future visits, even though it may be years in between.
One other huge lesson I've learned about analyzing negative situations to the point of making them positive, is how to regulate myself. As I said, these boys can smell fear 2 miles away! If I go into a situation with a preconcieved notion about what might happen based on what happened before, it's bound to lead to a negative experience. I realize now that there are things in the world that I cannot control. Those can lead to a negative reaction for the boys.....BUT, if I envision a positive experience and prepare them the way I know works, then I've done all I can. The outcome is not predetermined.
I also learned to relax a bit more (trust me--this took time). A call from the school saying, that "there was a toileting accident today", did not throw me into a panic. Often times, it will have been a one-time occurrence. If a situation was ongoing, and I could see that it was problematic, I took action. I would gather the facts around it (especially if it was happening at school where I was not there), take some time to analyze it and ask for help from professionals if needed. Often times it was needed. Having a neutral party involved helped me to see clearly what was happening and what could be done about it. These people are still very involved in our lives and have helped tremendously (you know who you are). I was also able to relax when the High School teacher called me and said, "As you know, it is our policy to contact parents when inappropriate behavior occurs.....("uh huh", I said)...."Today, Joe touched a girl on the butt. Now....before you go off on me, just know I HAD to call you.....(long pause) It's not like he didn't have a few role models......so consider yourself called" (click). I had to laugh. This was not a situation that required my intervention.
So, as far as doctors visits go, we are still working on a full successful experience, but it's about 80% better. We have implemented a routine where we attempt to use an automated blood pressure monitor once a month. We all sit down and take our blood pressure as a family. Is it perfect?--no. Are we trying?--yes. This will take time. This past Christmas we spent time at Disney Land with a very successful visit. Was it crowded?--yes. Were there things we could not predict?--yes. Did we make it positive?--absolutely. We were able to use photos from Disney World (it doesn't matter to them where--it's the subject matter that is most important) as a model for what would happen and where we would be.
I believe these opportunities for improvement will always be there for me. I actually hope they are. One of them is to help teach others how to live with and handle the boys day-to-day. For example, at this very moment, Joe is exhibiting a bit of hyperarousal by stomping his feet. Does it require my intervention? Maybe. Can't he see that I am busy anyway? Teaching others to know what the boys thresholds are, and how to intervene will be a long-term and ongoing process until we are out of the picture. I welcome the challenge and the chance to continually learn my own fear threshold.
As time passed, we still had meltdowns, but I was able to sit back a little bit rather than giving a knee-jerk reaction. It wasn't always productive, but sometimes it was. By this time we had implemented a sensory diet, but we were still very much in the learning stages when it came to knowing what the "triggers" were or how to be more proactive. I call this my "observation" years. For example, when we tried Special Olympics skiing. Jake loved it and moved into a routine very quickly. Joe--not so much. We tried a different strategy each week to no avail. The one thing I learned from this (if there had to be a lesson) is to consider what the priority of an activity is. For skiing, we decided it was not a life skill that had to be loved. The same goes for Joe's disdane for Halloween. It's not important to us that he love Halloween. On the other hand, doctors visits needed to be a part of life, and it would help a lot if they were successful. I had no intention of spending my life suffering through a routine task. I wanted no part of ongoing bite marks on my arms or bloody scratches everywhere else. This had to be mastered.
I decided that a trip to Disney World was also something we needed to find a way to enjoy. The boys have always loved Disney and probably always will. Our first trip was a logistical nightmare. We had no idea that Joe woudl have a severe aversion to riding on the boat that we had to take to get from the campground to Magic Kingdom. Because we were on vacation, I did not have the luxury of "sitting out" for 2 days. It would not be fair. We made some immediate adjustments to get through it. This and other necessary experiences gave me a way to view situations in a more productive way when I was able to analyze the need for doing it. So, we had one bad visit. Is this something we will or need to do again? If so, I had to figure out how to make it successful. In the case of Disney World, I had one tool that I didn't even know I had---photos of happy moments. These will be saved and recorded for future visits, even though it may be years in between.
One other huge lesson I've learned about analyzing negative situations to the point of making them positive, is how to regulate myself. As I said, these boys can smell fear 2 miles away! If I go into a situation with a preconcieved notion about what might happen based on what happened before, it's bound to lead to a negative experience. I realize now that there are things in the world that I cannot control. Those can lead to a negative reaction for the boys.....BUT, if I envision a positive experience and prepare them the way I know works, then I've done all I can. The outcome is not predetermined.
I also learned to relax a bit more (trust me--this took time). A call from the school saying, that "there was a toileting accident today", did not throw me into a panic. Often times, it will have been a one-time occurrence. If a situation was ongoing, and I could see that it was problematic, I took action. I would gather the facts around it (especially if it was happening at school where I was not there), take some time to analyze it and ask for help from professionals if needed. Often times it was needed. Having a neutral party involved helped me to see clearly what was happening and what could be done about it. These people are still very involved in our lives and have helped tremendously (you know who you are). I was also able to relax when the High School teacher called me and said, "As you know, it is our policy to contact parents when inappropriate behavior occurs.....("uh huh", I said)...."Today, Joe touched a girl on the butt. Now....before you go off on me, just know I HAD to call you.....(long pause) It's not like he didn't have a few role models......so consider yourself called" (click). I had to laugh. This was not a situation that required my intervention.
So, as far as doctors visits go, we are still working on a full successful experience, but it's about 80% better. We have implemented a routine where we attempt to use an automated blood pressure monitor once a month. We all sit down and take our blood pressure as a family. Is it perfect?--no. Are we trying?--yes. This will take time. This past Christmas we spent time at Disney Land with a very successful visit. Was it crowded?--yes. Were there things we could not predict?--yes. Did we make it positive?--absolutely. We were able to use photos from Disney World (it doesn't matter to them where--it's the subject matter that is most important) as a model for what would happen and where we would be.
I believe these opportunities for improvement will always be there for me. I actually hope they are. One of them is to help teach others how to live with and handle the boys day-to-day. For example, at this very moment, Joe is exhibiting a bit of hyperarousal by stomping his feet. Does it require my intervention? Maybe. Can't he see that I am busy anyway? Teaching others to know what the boys thresholds are, and how to intervene will be a long-term and ongoing process until we are out of the picture. I welcome the challenge and the chance to continually learn my own fear threshold.
Saturday, September 10, 2011
Today Was the Best Day Ever!
For one to understand why today was such a good day, I must begin the story about 10 years ago.
Living in Colorado, skiing is a normal way of life for many families. Ok, so "let's try it!" Our journey with sports had begun. We drove 2 hours one-way every Saturday for weeks to participate in the Special Olympics Ski Program. Jake loved it! Joe, not so much. We tried. We thought about just having Jake participate, but then decided it would be better to stay together as a family.
A few years later, when Jake was in 9th Grade, the High School had an amazing unified basketball team (unified means that "typical" peers assist). The league was started by a wonderful man that lead the team at this high school. Every year they had a tournament that was sponsored by the fraternity at the state university. We signed Jake up. It's not like he came to us and said "Mom, I want to play basketball!" We just thought he might gain some gross motor skills, and have some fun too. We took him to every practice and he really caught on. The other players ranged from experienced to beginner-level like Jake. The difficulty came when we had to bring Joe along in order to watch Jake.
We situated ourselves on the bleachers with plenty of space on either side. During the first game, the applause and cheers of encouragement were suprisingly loud! Boom! Joe smacks me one! He comes at me in an effort to give me a firm bite. Yikes! Should we attempt to remove him? We did. Even though I had prepared a visual schedule, it was not enough. I felt crushed.
The following week, I prepared a more defined visual schedule giving Joe specific information about what would be required of him (little). We brought snacks, his earphones and a PSP with movies on it. We entered the gym (although it was in a different school the 2nd week) and the number of people already in the gym was huge! Bam! Didn't even get in the door and Joe was already suffering from uncontrollable anxiety. This was something we could not have anticipated.
For 2 years we tweeked this scenario, the methods and the approach. Some weeks of the basketball season were successful (we made it through) and others, not so much. Eventually, Joe built up a level of tolerance that allowed him to take part. The influencing factors such as noise, environment, crowd, length of the game, lighting, Joe's mood and other issues had to be considered. We did eveything we could to allow Jake to play, but required that Joe come along. We sought professional advice, gave additional OT all day on game day, and tried to remain as calm as we possibly could. As we approached the end of the 2nd year, we noticed Joe was more alert and able to tolerate input. We saw a little bit of comfort between he and the coach, so we asked the coach if he would just give Joe a "high 5" after the game. Joe did it! Finally!
By the time we got to season 3, Joe was in 9th grade and a new team had formed at Joe's new High School. We moved Jake over so they could play on the same team. Joe loved the coach and knew the other kids well by then. He knew the environment and the people, and by now (from watching Jake for 2 years) he had a grasp of what the game was about. The transition from watching to playing was pretty smooth!
To make a long story short, both have played for years and have loved it! The companionship, the increase in motor skills, the routine, the sportsmanship and the overall growth of the boys has made all of the work and energy we put into it well worth it. They look forward to the beginning of the basketball season each year. We felt a sense of success having survived the challenges of basketball, therefore, we had not actively pursued any other sports. The boys were happy and productive and seemed to like basketball.
On September 10, 2011, a close friend of the boys invited to watch her play on a special softball team. We had been camping with her family, so it made it easy to transition to watch her game, although I had no time to prepare in advance. I had no visuals prepared, so I had to attempt to use verbal prompts, using as many familiar words as possible. I told them we would "go with "K" and sit and watch her play ball, then we would get in the car and go back to "Rocket" (our RV) at the campground". We got ourselves ready, got in the car and headed to the field.
It didn't hurt that the field was in the grounds of their old school. We waited a few minutes in the car, at which time the coach came over and talked to the friends' Mother. Joe gave the Coach a "high 5". We got out of the car and headed to the bleachers. We sat down together to wait for "K"'s turn to play. The time came. She got up to go to the dugout. Joe followed. Hmmmm....that's good, I thought.
One of the helpers was passing out little packaged snacks to the kids. Joe took one and sat next to his friend. He looked very relaxed. No anxiety whatsoever. "K" asked Joe if he wanted a helmet. He took it and put it right on! Then there were a selection of mitts. "K"s Mom took the queue (which she is great at) and just started trying different ones on him. Joe favored a catchers mitt. He even had it on the wrong hand. They moved to a grassy area and started to play a little bit of catch. Joe had never really been interested in this, so it was great to see! I watched from afar as I sat with Jake in the stands. Their team was in the outfield first. Joe followed one of the cute peer team members (female of course) to the outfield. He had on his mitt, his helmet and a huge smile. I could not believe my eyes. I snapped a few pictures in my disbelief. He had never even played before!
Soon, it was their turn to hit. They called Joe's name. The Coach knew he was new, so they set up the Tee for him. Joe proceeded to homebase. They pitched the ball and he hit it! I felt elated!!! The peer team member modeled the running to base and he followed to first base. The next hitter came up and hit a good ball. Joe ran all the way home! It all happened so fast, I didn't have time to think about how it happened.
Joe returned to the dugout and stood for a few minutes. I could see that he was happy, but a little stressed. I moved in and asked if he wanted a "break". He agreed. We returned to the bleachers. From past experience I knew the key to today's success would be to end on a positive note. Joe sat down, put on his earphones, turned on his ipod, and relaxed. I told him how very proud I was of him and how proud Dad would be. We sat and watched a few of his teammates as they played. Several minutes passed. I could sense that the heat of the sun and the excitement of the past moments were still present in him. I asked if he would like to go to the car. He said, "Yes". We calmly proceeded to the car. About 3 minutes later, the game was over and we returned to "Rocket" as promised.
The contrast in the experience of today and that of years' past is so clear to me. To get to this place where Joe is able to tolerate new things, and to enjoy them would have been unimagineable all those years ago. The fact that we need to do it in measured doses does not matter to me. Only his happiness and success in life is important. Today was a great example of his growth and we are proud. Most of all, Joe is proud of himself. We plan to go next week, although I will have visuals prepared. I only wish I had had the video camera on my person!
Living in Colorado, skiing is a normal way of life for many families. Ok, so "let's try it!" Our journey with sports had begun. We drove 2 hours one-way every Saturday for weeks to participate in the Special Olympics Ski Program. Jake loved it! Joe, not so much. We tried. We thought about just having Jake participate, but then decided it would be better to stay together as a family.
A few years later, when Jake was in 9th Grade, the High School had an amazing unified basketball team (unified means that "typical" peers assist). The league was started by a wonderful man that lead the team at this high school. Every year they had a tournament that was sponsored by the fraternity at the state university. We signed Jake up. It's not like he came to us and said "Mom, I want to play basketball!" We just thought he might gain some gross motor skills, and have some fun too. We took him to every practice and he really caught on. The other players ranged from experienced to beginner-level like Jake. The difficulty came when we had to bring Joe along in order to watch Jake.
We situated ourselves on the bleachers with plenty of space on either side. During the first game, the applause and cheers of encouragement were suprisingly loud! Boom! Joe smacks me one! He comes at me in an effort to give me a firm bite. Yikes! Should we attempt to remove him? We did. Even though I had prepared a visual schedule, it was not enough. I felt crushed.
The following week, I prepared a more defined visual schedule giving Joe specific information about what would be required of him (little). We brought snacks, his earphones and a PSP with movies on it. We entered the gym (although it was in a different school the 2nd week) and the number of people already in the gym was huge! Bam! Didn't even get in the door and Joe was already suffering from uncontrollable anxiety. This was something we could not have anticipated.
For 2 years we tweeked this scenario, the methods and the approach. Some weeks of the basketball season were successful (we made it through) and others, not so much. Eventually, Joe built up a level of tolerance that allowed him to take part. The influencing factors such as noise, environment, crowd, length of the game, lighting, Joe's mood and other issues had to be considered. We did eveything we could to allow Jake to play, but required that Joe come along. We sought professional advice, gave additional OT all day on game day, and tried to remain as calm as we possibly could. As we approached the end of the 2nd year, we noticed Joe was more alert and able to tolerate input. We saw a little bit of comfort between he and the coach, so we asked the coach if he would just give Joe a "high 5" after the game. Joe did it! Finally!
By the time we got to season 3, Joe was in 9th grade and a new team had formed at Joe's new High School. We moved Jake over so they could play on the same team. Joe loved the coach and knew the other kids well by then. He knew the environment and the people, and by now (from watching Jake for 2 years) he had a grasp of what the game was about. The transition from watching to playing was pretty smooth!
To make a long story short, both have played for years and have loved it! The companionship, the increase in motor skills, the routine, the sportsmanship and the overall growth of the boys has made all of the work and energy we put into it well worth it. They look forward to the beginning of the basketball season each year. We felt a sense of success having survived the challenges of basketball, therefore, we had not actively pursued any other sports. The boys were happy and productive and seemed to like basketball.
On September 10, 2011, a close friend of the boys invited to watch her play on a special softball team. We had been camping with her family, so it made it easy to transition to watch her game, although I had no time to prepare in advance. I had no visuals prepared, so I had to attempt to use verbal prompts, using as many familiar words as possible. I told them we would "go with "K" and sit and watch her play ball, then we would get in the car and go back to "Rocket" (our RV) at the campground". We got ourselves ready, got in the car and headed to the field.
It didn't hurt that the field was in the grounds of their old school. We waited a few minutes in the car, at which time the coach came over and talked to the friends' Mother. Joe gave the Coach a "high 5". We got out of the car and headed to the bleachers. We sat down together to wait for "K"'s turn to play. The time came. She got up to go to the dugout. Joe followed. Hmmmm....that's good, I thought.
One of the helpers was passing out little packaged snacks to the kids. Joe took one and sat next to his friend. He looked very relaxed. No anxiety whatsoever. "K" asked Joe if he wanted a helmet. He took it and put it right on! Then there were a selection of mitts. "K"s Mom took the queue (which she is great at) and just started trying different ones on him. Joe favored a catchers mitt. He even had it on the wrong hand. They moved to a grassy area and started to play a little bit of catch. Joe had never really been interested in this, so it was great to see! I watched from afar as I sat with Jake in the stands. Their team was in the outfield first. Joe followed one of the cute peer team members (female of course) to the outfield. He had on his mitt, his helmet and a huge smile. I could not believe my eyes. I snapped a few pictures in my disbelief. He had never even played before!
Soon, it was their turn to hit. They called Joe's name. The Coach knew he was new, so they set up the Tee for him. Joe proceeded to homebase. They pitched the ball and he hit it! I felt elated!!! The peer team member modeled the running to base and he followed to first base. The next hitter came up and hit a good ball. Joe ran all the way home! It all happened so fast, I didn't have time to think about how it happened.
Joe returned to the dugout and stood for a few minutes. I could see that he was happy, but a little stressed. I moved in and asked if he wanted a "break". He agreed. We returned to the bleachers. From past experience I knew the key to today's success would be to end on a positive note. Joe sat down, put on his earphones, turned on his ipod, and relaxed. I told him how very proud I was of him and how proud Dad would be. We sat and watched a few of his teammates as they played. Several minutes passed. I could sense that the heat of the sun and the excitement of the past moments were still present in him. I asked if he would like to go to the car. He said, "Yes". We calmly proceeded to the car. About 3 minutes later, the game was over and we returned to "Rocket" as promised.
The contrast in the experience of today and that of years' past is so clear to me. To get to this place where Joe is able to tolerate new things, and to enjoy them would have been unimagineable all those years ago. The fact that we need to do it in measured doses does not matter to me. Only his happiness and success in life is important. Today was a great example of his growth and we are proud. Most of all, Joe is proud of himself. We plan to go next week, although I will have visuals prepared. I only wish I had had the video camera on my person!
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