Nothing is Perfect! Not Even Vacations!

You would think that a vacation, any vacation, would be something to look forward to, and we would not dispute this. But, when you own your own business and travel with two young men with Fragile X, it’s a bit like taking an Atlantic Sea Turtle out of the Atlantic Ocean and relocating it to the Pacific Ocean. They still carry their house on their back, but the scenery is different. There are lots of unfamiliar creatures and landmarks, but “going through the motions” is the same. We have learned to acclimate this way in our own lives. It hasn’t come naturally, but we have done it as a means of survival.

Neither Chris nor I experienced vacations like most families. My family vacations usually revolved around work or cars (which in my dad’s world were pretty much the same thing). For anyone who tried to make it fun, the word “vacation” usually brought on groans of dismay from the peanut gallery. Chris’s family would spend a lot of time talking about going on vacations, places they would visit, but never really did. Needless to say, we had a lot to learn about how vacations work once we decided to start taking some of our own, but we were willing to take on the challenge!

Our friends will tell you that there are no other couples quite like us. Our rituals and the motions of our daily life bend and sway as necessary to conform to its requirements. We are extremely methodical in our planning of everything, and a vacation is no different. When our boys were young, we were not so successful at pulling off the sort of vacation that most people had. The fact of the matter was that if we hadn’t been determined to learn, our boys would have been fully content to stay home day after day, week after week, year after year. This was not an option. (See blog dated 11-29-11 or 6-14-11 for previously unsuccessful vacations and more information on background). One way or another, we were going to figure out how to make it work.

The planning of a vacation for us always involves our RV (nicknamed Rocket), and almost always starts months—sometimes even a year—ahead. Spontaneity does not live in our house. We begin each planning session in a backwards way compared to most people. First we decide on the outcome we want, and then we back into the journey, planning each step. What do I mean by that? Well, for example, we might decide that we will go to Disneyland and that we want the boys to have a successful (and hopefully fun) time. Then, we figure out what each step will be to get there. Well, for this trip to Texas, that wasn’t an easy feat.

Why Texas? Well, some years ago, we became enamored with the Food Network program called “Diners, Drive-ins, and Dives” (some MIGHT say obsessed). By this time, Jake and Joe were getting their bearings on protocol for eating out. They were also expressing some pretty strong opinions about preferred foods. This opened a huge door of possibilities for vacations! At home we don’t make a habit of eating out very often. In fact, our rule is generally, once a week. And surprise! It’s even on the calendar. Using this method makes it very easy to set expectations for the boys while providing that familiar level of comfort and routine.

Since there is no Disneyland in Texas, we had to create opportunities for motivating, fun things to do. With each trip (we have taken a few...seeing a mere 46 of the lower 48 states of the U.S.) we have had the clear advantage of having a familiar way to travel: Rocket. For our boys, this is a way to check one “need” off of the list. . Reminding myself of the 3 elements that make up a successful experience for our FX boys: 1. Person 2. Task 3. Environment. Also, keeping in mind the things that MUST be communicated to them in order to make any experience successful, they need to know the following: 1. What am I doing? 2. How long will it last? 3. When will I be done? 4. What’s next? So, we need only focus on the people and the tasks and communicate it somehow. As usual, I make up a general calendar of the days of the month giving them and idea of where we will be. I print it out and put it in a sheet protector and hang it on the fridge in the RV. Next, I use their daily schedule (see blog dated 5-23-11 for more specific info on this) filling in the general items that they need to know to give a sense of what we will be doing using picture symbols. I also bring along all of the other picture symbols I will need to fill in days that are unusual or different. So, we need only focus on the people and the tasks. On day one, as is often the case, our day is spent simply driving to get to a destination. In the case of Texas, it’s two days. Texas is a HUGE state! We do make a point of taking lots of breaks and stopping to stretch our legs so no one (including the driver) gets too tired or has to cross their legs too long. First destination: Austin.

We arrived in Austin late—it is after all a 500-mile journey! If you’ve never spent time in an RV, you would have no idea what I’m talking about, but if you have…..it DOES take a few minutes of “waiting” to get set up enough so that the boys can move freely. As we do this, I realize how far they have come in this element. Miles! Our first camper wasn’t so bad in the “wait department” on the inside (the outside was A LOT of work compared to Rocket), but now each slide-out requires standing fairly still while we wait for it to go all the way out. Fortunately, over the years we’ve also honed our visual schedule to reflect this waiting and all of the steps that have to be “done” before we are officially set up. As is the case in many situations where one is short on time….we order pizza. Can I just say that I really think that two hours waiting for a pizza is a bit ridiculous? Thank goodness the boys were content to be moving around after driving all day. They didn’t even complain!

Austin is proof central that we CAN be the determining factor between having either a successful or an unsuccessful journey. We have learned that it is almost always a better idea to take the time to prepare the boys rather than not. Whenever we plan to deviate from the routine, we must implement our “survival plan.” This includes taking backpacks almost everywhere, filled with earphones (for the noisy environment), DVD player (since we have not graduated to the iPad—probably never will), and other diversions that the guys can access themselves when needed. If you have a younger child, I encourage you to dream about this scenario! It is possible! So, we venture out and really push the envelope, hitting three “DDD” places in one day! Now this takes a concerted effort!

We hit “DDD” place #1 for a late lunch (the visual schedule is ALWAYS with us). We have learned to go well-prepared to anywhere there is a possibility of waiting. The Monument Café in Georgetown was superb. The service, food and atmosphere are a sure “Do-Over!” Both boys were very content and did very well. We decided that since we were so full we could pop after lunch, and because we were already in the north side of town (where two other “DDD” spots were) we should plan for the rest of the day. We first stopped by Round Rock Donuts (already a “Do-over”) to get breakfast for day three, then we proceeded to Salt Lick for a take-out dinner for later. Joe had reached his limit of enthusiasm by then, so Jake was my voluntary helper. He wanted to go into each spot and help me order and, as he is so good at, hauling out the “loot” from #2 and #3. We returned to Rocket for a leisurely and relaxing evening.

One other major thing that we’ve learned to do when we travel is to keep the routine as much as possible. One big part of this is the boys’ sleep routine. Even when we are traveling we try very hard to conform to this one thing. It involves turning off all of the lights at about 6:30 p.m., watching Jeopardy then Wheel of Fortune, while the boys are covered with their weighted blankets, each weighing 35 lbs. Then we read or watch a quiet movie until they are ready for bed. Often times we will enjoy a small snack and will always take their medications. It may seem like a small thing, but it has had HUGE outcomes.

The next day was not such a rush but we stayed the course. For “DDD” #4, the Magnolia Café was a funky little place that obviously must serve awesome food because it was BUSY! We lucked out and got a table right away. Little surprises are not wasted on us. The earphones and diversions obviously have become routine for Joe, as he independently migrates to them without any behaviors whatsoever. We decided that #4 was enough for this stop and we relaxed the afternoon away. As evening approached, Chris and I spent a reflective moment being proud…so very proud. The fact that even five years ago neither of the boys would have given us the gift of two successful days of indulging in our own obsessions was crystal clear.

Our next stop was San Antonio. We did quite a bit of preparing ahead of time for this stop. Our pace did not slow down one bit, which meant that we had to be “on our game” for the boys’sake. As our friend Tina says, “It really is up to us parents to be the ones to prepare, otherwise we set our kids up for failure.” So true. As I reflect on this, I realize that a pace such as that in Austin and in San Antonio, we must be vigilant. With all this preparation, it has become clear that the boys CAN do most anything! We attended the Fragile X Awareness walk on Saturday (1.4 miles), we mingled with the crowd there, we had company, we visited the home of friends and shared a meal, we went to several malls, we drove at least 300 miles around the city, we ate out many times, and through it all they endured. To make it even more fun, we visited Sea World (results were clearly 80% better than the 1^st time we visited), and even had a group luncheon at a restaurant. The time we spent with other families in San Antonio was absolutely fabulous! Making sure the boys were prepared made it all super fun and a great memory! Had we not prepared them or ourselves, the outcome could have been totally different….but it wasn’t. J Learning to cope and self-regulate have been invaluable lessons. We chalked up three more “DDD” spots, including one that required a 30-minute wait! Woo hoo, go us!

To be honest….I do not think we would have even attempted this trip five years ago. The thought of it even now still gives me anxiety. The fact that we were not prepared makes the idea that the boys would not have been prepared even more haunting. Looking back, I constantly wish that I had known then what I know now. I DID know it, but I did not know HOW to do it completely. We were still learning.

Next stop…Corpus Christi. We had never been to Corpus, but we love a visit to the beach. Unfortunately, as we approached, the weather was quite overcast and cloudy. Not the sort of thing one likes to see at the beach! Because we had never been there before, we chose an RV park based on information obtained on the internet. Sometimes this is really good; other times, not so good. When one owns a B.A.R.V. (Big A** RV, a.k.a. Rocket), one must be cautious as to the spot one chooses to park! Hoy. It was a bit of a challenge getting Rocket into her spot, but we did it. Not such good news for the bushes we had to navigate. After a few minutes of setting up and getting settled, we had a chance to look around. We have seen some interesting things in our years of travel. This was no exception. We realized that the box truck parked next to us was inhabited by a couple that obviously lived in there. We gave thanks for all of our blessings. They were very nice people! Over the many years we have been so fortunate to meet some of the nicest people you’d ever want to know in RV parks around the country. For Corpus Christi overall, we would say, “Park, not so nice. People, awesome.” The weather continued to be gloomy, and the forecast was without improvement. Our future destinations also did not look good. We had to make a decision.

We decided that this might be our opportunity to visit Fredericksburg, TX! I had always heard that it was a quaint town worth a visit. So, we changed our itinerary altogether and chose to head toward the West and ultimately Arizona. Our families live in AZ, but we decided that we would refrain from telling them we were coming and surprise them. It’s not often that we do something spontaneous for reasons previously noted. This plan was certainly doable.

The one question we would most like to ask as it relates to traveling in a B.A.R.V. is, “Who programs the information in GPSs, and have they EVER driven a B.A.R.V? If not, this should be a requirement!” Over the years, we have learned NOT to trust everything a GPS tells us. Since we purchased a new RV this year, we thought maybe we could trust it. NOT! Before we left, we thought it would be neat to load a celebrity voice on it, so we chose Bert & Ernie from Sesame Street. We’ve all thoroughly enjoyed this discovery. During our visit and departure from Fredericksburg, not so much.

We called ahead to the RV park and the gentleman proceeded to give us brief directions to the park. I didn’t write them down, but I remembered him giving us a specific street to follow. Bert & Ernie directed us off of the main road onto a side street that turned out to be a residential neighborhood! We traveled two blocks on this and then returned to the main road where we started out! Who would have thought that the hill country of Texas would have so many trees? Well, eventually we made it safely to the RV park, sans nerves, and got settled. It was a cute town.

As we prepared to head out of town and toward I-10, we remembered our mistrust of the GPS system. It wanted us to go on the main street through the center of town to reach the highway! Not! So, we decided that we would return the same way we came! This would have required a short diversion of only 18 miles or so. Made perfect sense until we missed our turn. Bert & Ernie were not happy and they repeatedly repeated “Turn around at the next opportunity.” Not an easy task on a two-lane country road in a B.A.R.V. Then we noticed that there we no more of the big churches we had previously passed, providing large, roomy parking lots. Only ornate, decorated gates that announced their entrance into grand Texas ranches. Not enough room to turn around a car, much less Rocket!!! Finally, after about 8 miles, Bert & Ernie recognized a road on our path and asked us to “turn right.” We obliged. Hoy. Now we were on a one-lane road to who-knows-where in a B.A.R.V. with a Suburban hooked to the back, with no chance of backing up! There was a sign leading us to a winery. In my mind, this was the perfect diversion! Now was the time that I was wishing we had one of the GPS representatives on board with us! Bert & Ernie requested that we “continue on this road” for 30 miles. We had no choice. We also had no idea where this road would lead us. Everything was tense to say the least, until……we approached a power line that was in our line of vision, obviously below the roofline of the RV. It swung at a diagonal angle to the road, so we drove ever so slowly toward the other end as the power line took an upward path. It also required that we veer a bit off of the crowned one-lane road into the dirt. We never knew that the hill country of Texas has so many LARGE OAK TREES! We made it. Once again, sans nerves. I “suggested” that we may want to knock on a door and get more information on the road and where it led. Ladies, you know what any man’s response here would be. This time was no different. We drove on. After 35 miles, and almost an hour from departure, we reached a road that finally took us to I-10 and in a westward direction. Only 450 miles left to go before we stop for the day!

We reached our destination for a one-night stopover. We got set up and somewhat settled in. About 30 minutes later, we realized that the docking power to the RV was not working! So glad we had not completely settled our nerves! After three tries to neighboring docking power, we finally got connected. El Paso, TX, will not be a destination for future stops. Duly noted.

After another long day’s drive, we reached our destination in Arizona. Before we went to the campground, we decided to try something totally new….A semi-truck car wash!!! We had seen these before, but had never tried one. We will be doing that again!!! Joe sat in the passenger’s seat while 6 guys washed “Rocket” and cleaned off all of the bugs from the windshield! He was waving and saying “Hi Guys” the entire time, all while we did a task that needed done!

Afterward, we got settled into our favorite RV park, where the people are so nice and the amenities are great. Jake especially loves the hot tub. The park is convenient, as it is only about 2 miles from my family. The sun was shining brightly with no clouds in the sky. Normally, we Skype with my parents on Sundays, and it happened to be a Sunday. I called my Dad and informed him that there would be no Skype, but gave the address to the RV park and requested they come. Dinner was already waiting. We all had big hugs and enjoyed the surprise. The boys were very happy too, especially Jake. One of his favorite things to do is to “Boo Pa,” and this was his opportunity. This is Jake’s way of engaging whomever he is happy to see by simply “booing” them (think Halloween—also one of his favorite times). Grandpa reacted appropriately by acting scared followed by a laugh. It was a good day.

Visiting family allows me time to hone skills that the boys have as well. For example, when we visited my parents at their house for the first time on this trip, I replayed a video of a previous visit (conveniently loaded on the desktop of my laptop) to remind the boys of what they need to know. See blog dated 11-29-11 for full details of this. It also reminds me to be sure, no matter what, to use their visual schedule. We had a nice dinner at Chili’s restaurant one evening with the whole family. Even though the boys had been there before and had done the exact same routine, there is no telling where their hyperarousal is for this day compared to previous visits. I’ll take a 100% positive outcome with preparation over an 80% successful unprepared trip anytime. Since I came prepared with the picture symbols I needed, it took me a mere 5 minutes to get it ready.

Even in the absence of “DDD” spots we enjoyed a wonderful five days in Arizona with family. It was much less demanding on the boys (all of them). Even Lulu, our dog, was enjoying basking in the sun. We took time to just relax, to enjoy the company of family and the absence of demands. The boys went swimming in the middle of November! All in all, it was a great vacation with lots of adventure and lots of fun times.

Three and one-half weeks, I believe is a threshold for the boys. Though they had fun, and enjoyed lots of time free of demands, I could see that they would be happy to be home. Joe stole my phone one evening during our last days on the road. He somehow communicated that he wanted to see a picture e of his mentor, Daniel, from Facebook. I obliged. He would not give me back my phone the entire evening! He had such a huge smile on his face while he looked at that photo. Jake was also giving us signs that he wanted to be home and back to the routine. Mostly, talking about “booing”our neighbors and best friends, Phil and Doris.

As we headed home, we reminded ourselves that no matter how many times we go on a vacation in Rocket, not one of them is perfect. What is perfect is the time we have together and the GOOD times we experience as a result. I remind Chris that one day we will look back and laugh at our experience in Fredericksburg. He says,“No time too soon.”

Counting My Blessings...and They Are Many

I admit it….I am like most people.  I do not give thanks for all of my blessing near enough.  In keeping with my own individual style, I prefer to list them all at once, so here goes (in no real particular order)…

1. Thankful for my Husband who really is a Saint. He puts up with me every day, can cook his own meals, do his own laundry or any other task bestowed upon him. Our journey and every step of it has been taken together. HUGE BLESSING!

2. I am thankful for my first born, Jake. He has taught me to adjust my expectations and always remember to dream big.

3. I am thankful for Joe, for without him I would not have learned to laugh out loud or to practice patience daily.

4. I am so thankful to have my health and hope to continue to take good care of it.

5. I am thankful for “Rocket” our RV. This luxury has given us a freedom that we would not otherwise have to enjoy sights we would never hope to see with 2 Fragile X boys.

6. I am thankful that we have our own business that is prosperous enough to provide us with the things that we need, and often with things we want.

7. Thankful for excellent customers that keep our business running.

8. I am thankful for our home and all of the safety and comforts that it provides.

9. Thankful for all of my family even though we are not close in proximity, they are close in our hearts.

10. I am thankful for the MANY friends that I and we have. Their support and friendship has been unmatched and invaluable.

11. I am thankful for many small things in life like cold drinks, hot showers, crushed ice, straws, toilet paper and other conveniences that we often take for granted.

12. I am thankful to have enough money to live the quality of life we have. Though we are not millionaires, we have enough.

13. I am thankful to live in the beauty of Colorado with all its splendor.

14. I am thankful to live in the United States where there are freedoms far beyond what the rest of the world could dream of.

15. I am so thankful for the gift of support and fellowship that we receive from the Fragile X Community. During our journey, this has been an invaluable gift.

16. I am thankful for technology and the things it has allowed our boys and us to do. 

17. I know I already said I am thankful for my family, but my sister and Mom have been especially important to me. I am thankful for their love and support every day.

18. I am thankful to live in a country where we have a government of the people, even though I may disagree with it about 50% of the time, we have liberty like no other country in the world.

19. The weather is a big thing that we are continuously thankful for. We live in a state where we can enjoy extreme cold, extreme hot, and everything in between. We have never suffered a huge natural disaster and for that I am thankful.

20. It may seem silly, but I am thankful for clean water, fairly clean air and an environment that we can thrive in.

21. I am thankful for the many resources available for our boys. Even though they can often seem lacking, I am reminded that many countries have nothing. 

22. I am thankful for the food we eat, be it too much at times. We can obtain almost anything our heart desires and this in itself is a blessing.

23. I am thankful for the people that serve as Angels to us and our boys (you know who you are).

24. I am very thankful for my own ability to learn, to reason, to have judgment and to be able to make decisions on my own. I am also glad I have inner motivation and a tendency toward the analytical. It’s what makes me who I am!

25. I am thankful to have love. I am fortunate to have the love of my family and friends to surround me when I need it most.

26. I am so happy to have the ability to make choices in life. 

27. I am thankful to have and to have experienced happiness in life and to be able to celebrate it.

28. I am thankful to have the ability to give to others so that I can experience the joy in others.

29. I thankful daily that my boys are relatively healthy and my worries are few.

30. Most of all…I am thankful for life

A Woman With A Vision

Last Saturday, I was fortunate enough to get to see a presentation by the famous Temple Grandin.  For those of you that do not know who she is, here is a link for more information.  http://www.templegrandin.com/   She is an amazing woman that is diagnosed with Autism.  As we all know, Autism (and FX) are spectrum disorders, meaning that there is a wide range of symptoms.  Even though my boys are diagnosed with a genetic disorder called Fragile X Syndrome, they also have a secondary diagnosis of Autism.  Therefore, I do like to read about both due to the similarities in presentation.  Anyway…..Dr. Grandin travels the world talking to people and educating about what it’s been like to grow up with Autism.  She is an esteemed author, as well as a Professor at Colorado State University.  Since Saturday, I have taken some time to digest all that I heard, and 2 things really resonate with me.

One of her biggest philosophies is that many kids with spectrum disorders “live under their disability”…meaning that they let their label guide them.  She used the example of the fact that she suffers from sciatica problems, but does not go around introducing herself by saying, “Hi, I’m Temple Grandin and I AM sciatica!”  She is a huge advocate for allowing all people to blossom, with supports, into whatever their gifts allow.  She (and I) believe that every child or young adult, or adult, have a glimmer of talent….it’s just a matter of having someone near that believes in, and has the ability to, help them grow it into a job.   She wants all people with disabilities to have a purpose and a job to do.  She talked a bit about the fact that she had a real problem with job interviews, but she was success at bringing forth the products she had created and let those sell themselves.  Even though she admittedly suffers from some social anxiety, she is able to overcome that by talking about her work and her creations.  The idea that a small spark can become a wildfire intrigues me! 

She repeated several times the fact that many young adults that she has met mostly spend their days playing video games or time on the computer.  This can be productive, but not without guidance.  She encourages people that have a love of computers to take an online course and direct their interest into something employable, like programming, design or engineering.  I loved the idea that even a crumb could grow into a mountain.  She says, "The worst thing we can do is NOTHING."  I would agree. 

 

My 2 young men (although they will always be "my boys"), were not so direct in their pursuit of a job.  My husband and I had to really be the driver when it came to their employment.  But, we were able to recognize that they each had things that they were good at, and build on those.  This continues to be a work in progress, but so far, we are mighty proud.

Secondly, I was so encouraged that the entire sold-out group that attended this Saturday consisted largely of retired educators.  She specifically gave them a challenge to help mentor young people in their community.  She stated that, “If you live in an area where there are no specialists, take a chance and have retired teacher or educator from your community help you.  They are great at English, Math, Reading and teaching anything from social skills to fine motor tasks.”  I loved this.  There are so many people all around us that have a gift to share with our children.  I call them the Angels around us.  You might find them in your church, your local recreation center or your grocery store.  Education doesn’t have to be formal to be worthwhile. 

 

I remember when we hired a new mentor or job coach for Joe.  Being familiar with the person is so important for him, and forunately, we knew this.  "The new guy" came to the house while we were home for 9 solid months before we put them in the workplace together.  They would "hang out" or watch a movie or take a walk--nothing complicated, but just enough to allow a bond to form.  Knowing that the bond would be the most important, also clearly made it the first step.  That bond has been key to Joe's success in the workplace now for almost 3 years. 

Even though I often feel like I have met my goals with my 2 boys, it is these times that remind me that there is always work to be done.  There is more I can offer.  There is so much more that they have to offer.  I just need to focus and help them to show me the way.  I look forward to every opportunity and every success.

Just A Sunday

This morning, I feel the way a Farmer must feel after he’s sowed, planted, and harvested.  The serene feeling of reaping what you’ve sewn; A certain calmness in knowing that you’ve created something and you can now see the outcome.  Enjoying a cup of joe while you stare out at the wide open space before you.  I’ve never been a Farmer, and I know absolutely nothing about farming, but I can imagine that satisfying feeling.  The reason I feel this way is because it’s a peaceful, unplanned, Sunday. 

Normally, throughout the summertime we have every single weekend fully planned and scheduled.  As fall sets in, there is less and less demand for this type of stress.  Living in Colorado, the winter holds its own routine, but with the holidays thrown in it becomes stressful again.  So, today, I enjoyed a rare fall morning of sleeping in (yes, all of us!).  As I lay awake but still, Jake awoke, came out of his bedroom, did his full lap of the house like normal and promptly went to the bathroom.  Then, I heard him choose a quick snack and go downstairs to his computer to entertain himself.  While this may not seem like a big deal to most, it IS a big deal to us. 

When Jake was little and finally able to sleep in a “big boy” bed, the evenings were filled with continuous trips to and from his room.  We would take turns putting him back in bed and as soon as we sat down, he’d come right back out.  We dealt with this annoying routine for what seems like a few years (I suspect it was months).  Then, Joe was born and our nights were filled with sleeplessness and frustration.  We took turns getting up, comforting, changing diapers, and attempting to soothe.  No matter what we tried, our days were ridden with dark circles and puffiness under our eyes.  Our patience was weak from lack of sleep.  This I remember well.

As the boys grew, our days became filled with school issues beyond what any one person should have to know and learn.  The constant barrage of demands was exhausting and numbing.  In fact, I hardly remember the minor details….I think it’s selective memory retention.  We were forced to juggle work schedules, the daily care of 2 boys with severe developmental disabilities, constant behavioral issues, getting from one therapy appointment to another, and back again the next day.  I look back on this time and wonder how I survived.  I think I was just going through the motions without any real thought or plan.

When we finally came to the realization that we had to do something significant in order to survive, things started to happen.  We compiled a real team consisting of friends, expert therapists, teachers and doctors.  I realize now, that the biggest shift was making it past the emotional hurdles that were holding US back.  Once we were READY to learn and do what was needed, things moved forward instead of backward. 

I remember the biggest discovery of all, and it still holds true today; we HAD to provide the boys what they needed both in the brain and in the body.  When you are faced with multiple essential deficits, this becomes the biggest challenge.  So, how could we provide all of this?  WHAT do we need to provide in order to meet these needs?  This is where the work began.  Experiments were started and stopped.  Once we saw results and knew what worked, we were able to progress.  This is all just words now, but the real work took years.  Each of our boys had different things (of course) that worked and didn’t.  But, with the help of others we were able to make those important discoveries that would help us move forward to today.  In the end, we learned how to work together as a family.

We set a simple goal for our boys…to “Be able to be as independent as they can possibly be and to be contributing members of society at whatever level they can”.  This goal alone helped us to see the future in a much more clear way.  We were able to decide what their future MIGHT look like based on what we knew that day.  There is no way to fully predict the future, but if we have a goal, we can work toward that.  We know now that we want our boys to be able to live in our home when we decide to leave.  This means that we need to help prepare them for doing as much as they can on their own, even when it’s something as simple as getting up, getting to the bathroom, getting breakfast, getting dressed and getting on with their day.  Even though this may be simple for us, it has proven to be a learning experience for our boys.  Being able to see them in this home environment daily helps me to break down what is still needed and see the improvements so far.

Being able to learn simple things like taking care of themselves (we are STILL working on this every day) and to move through their day independently but with assistance, or to be able to anticipate and cope with upcoming transitions.  These are HUGE achievements.  These are goals that we know now they are capable of meeting.

Nothing is simple, but nothing is impossible.  We know now that they CAN do it.  This morning was clear proof of that.  It truly is the simple things in life that bring me joy.

MISSION IMPOSSIBLE

My mission:  Spend an entire day free of Fragile X……

It’s a difficult one, but I am up for the challenge.  You may ask, “Why would you want a day without Fragile X?”  Well, my response would be…because I can!  No, wait.  Because I want to try.  I am always up to a difficult challenge, and this one I knew I could do!

My first task….be sure my cell has notifications off so that I do not feel the urge to talk about Fragile X on Facebook.  I do this the night before.  Second, choose a day when I can be away from home for long periods of time (because being around “Fragile X” is a default for me having 2 sons that HAVE Fragile X).  I choose a Thursday when I have my once- a-month book club with the lovely ladies that I enjoy…and subsequently, none of them has children affected with Fragile X.  That’s a bonus.  My plan is coming together splendidly.  I decide that I will schedule a few appointments for this day, as well as lunch with a non-Fragile X friend.  Lovely.  My evil plan is working.....

Thursday arrives.  The day starts out tough.  Joe (my youngest, age 21 years) wakes us up as usual around 5:30 a.m.  Oops…I forgot about that one factor.  Oh well….I will ignore it.  Anyone that knows us knows that we follow a pretty structured routine, so this cannot possibly “count”.  There is no way to avoid this (unless I want to spend a night away…..hmmmmm, why didn’t I think of that before????).  I reach over to the bedside table and turn my cell on.  Hey! It was instinct ok!  This is what I do every single morning of every single day!  I can’t help it!  We do run a business after all, so I do have to be able to communicate.  I hear a “BLING!”  I check the phone.  It’s a text from a friend.  Ok…YES!  It’s a friend with a child that just happens to be affected by Fragile X.  What am I to do?  Ignore it?  NO!  I cannot plan this.  This can’t count either.  I must accomplish my mission!

I get myself ready for a day without Fragile X.  I shower, dress and put my face on.  I inform my husband that I will not be home until 9:00 p.m.  I get in the car and head for my first appointment (it’s a fun one).  I park the car at the Chiropractor’s office and head in.  Ooops, I forget the fact that I have 3 “X” stickers and magnets plastered to the back of my car.  Am I supposed to remove those for one day, and then remember to put them back on????  NO WAY!  It can’t count.  Oh, and the personalized license plate on my car is totally insignificant too.  I choose to ignore it.  I enjoy my adjustment and massage, and then head back to the car, being careful to ignore the rear of the car.  If I don’t see it it doesn’t exist, right?  So, I turn my head deliberately as I pass by.

I head to my lunch with a good friend.  I haven’t seen her in months, so I am quite excited!  My life has been filled with all things Fragile X so I have had little time to enjoy friendships outside of “the bubble”.  This thought pops in my head, but I quickly dismiss it.  Ok.  I didn’t say it out loud, so it doesn’t count, right?  Right.  My friend has 2 grown boys that are doing very well.  They both work, but no weddings, and no grandbabies.  Her business is thriving and she is well.  She asks about my life, and I naturally go into a whole schpeel about this conference or that.  I quickly stop myself, and then fill her in on my “mission”.  We decide that it might be best to spend some time shopping together.  Good idea!  Retail therapy is always a good cure for anything!  We spend the rest of the afternoon chatting about clothes, shoes, handbags, and other mindless things.  It was fantastic!  The hours zip by, and finally it is time to say goodbye.  We hug and we part.  It’s time for me to head to my book club.

Again, I turn my head to avoid the blatant exhibit of all things Fragile X on the rear-end of my car.  I sit in the driver’s seat and check my phone.  Oops…a text from a dear friend that has 2 kids with Fragile X.  I CAN’T IGNORE IT, OK!  She’s a friend and I offer my support when I can.  We text back and forth for a few minutes, then I start the car and head 45 minutes to the book club.  I feel a sense of comfort and warmth from my day so far. 

The group convenes at one of the member’s homes.  It is spacious and lovely with lots of light and warmth.  A welcome sight for the entire group.  The aromas from the impending meal fill the air.  I can’t wait to taste it!  We all sit and chat about the latest news for each other’s lives.  Some have young children, others are Grandmothers.  It’s a cohesive group.  Of course, one person asks me, “And, how are the boys?”.  I hesitate.  I cannot possibly avoid talking about my awesome boys when the situation arises.  I am never short on words when it comes to them.  I don’t specifically mention the words “Fragile X”, but everyone here knows my life.  It doesn’t count when it’s insinuated.  I have known these women for years, and they us.  The 3 hours pass very quickly and finally we must depart.  I slowly make my way to the car, but since it’s dark now, I don’t have to avoid the rear end.  I can’t see it anyway, so it doesn’t count.  I make my way home with the music playing softly, knowing that I have made it through another day.  

Overall, it’s been a great day.  I’m not sure if I truly accomplished my mission of a day free of Fragile X.  I certainly tried.  It took work to get it all scheduled and set aside work for a whole day.  But, I realized that my life is full of both Fragile X and non-Fragile X things and people.  I have made some of the best friends through my interaction with Fragile X, but I have maintained others that have nothing to do with it.  When my boys were young, my life was 100% Fragile X and all things that it involved.  It has evolved into a life with mixed interests and opportunities, all full of challenges and joys.  We have created a high quality life even with Fragile X, and that in itself is the prize to me. 

MISSION ACCOMPLISHED!!!!!

A Little Melancholy

I never chose the Fragile X life….it chose me.  Today, as is the case in past years, when I return from an International Fragile X Conference, I often feel a bit melancholy.  There is so much time and preparation that goes into attending a conference, and then so much energy that continues to resonate afterwards.  This was my 10^th conference, and each time it has had new meaning.  One would think I would grow tired of the whole thing!

One of the most common questions I heard this time around was, “Do you still learn something when you come?”  Or, “What do you continue to get out of the conference?”  I know exactly how to answer.

Honestly, I do not even remember my first conference.  It was in Denver, Colorado, and there were a mere 100 or so people in attendance.  I was one of many in a daze.  I really had no idea what to expect, and I am not sure what I learned.  I do, however, remember some of the people that I met.  Few are still present today.  Conference #2 through 9 had a different meaning for me each time.  As my boys grew, so did my thirst for knowledge in different areas.  When they were young, I wanted to know what the future held for us as parents.  I also wanted to know how I could help my boys today.  I wanted to know how I could help make their life better and more productive.  I wanted to know how to help myself.  Little did I imagine that the friendships that I formed would become one of the most important things that I would take away.  The information I gained from the many experts has been invaluable (as you know if you saw “Mrs. Rogers’ Neighborhood”), and really could not be learned in a better setting.  Having every expert in one place at one time……priceless.

I made a personal decision to formulate a goal each time I decided to attend a conference.  This helped me feel like it had a purpose and was meaningful to me.  Whether it was networking, learning about adult issues, or toileting training, I set a goal.  During the early conferences there weren’t nearly as many attendees as there are now.  Fragile X Syndrome was just making its way onto the circuit.  I have many happy memories of early conferences and of the people that helped me through those times.  Some years ago, the National made a routine of incorporating young adults with Fragile X into the awards ceremony.  These presentations were heartwarming and always made the entire audience cry.  It also gave me so much hope.  I think hope is the one main thing that I have always come away with and I believe it’s become an addiction!  Now, it is my turn to provide hope to others that are just making their way down the Fragile X road. 

The St. Louis conference was really the first time that I had the courage to present “Mrs. Rogers’ Neighborhood” in its current form.  I spent many hours rehearsing it and preparing notes to tell the story of my boys.  I actually had taken several years off from conferencing and missed Washington, D.C., but that has all been worth it.  I needed that time.  I needed to focus on the one thing that is most important to me---my boys and their happiness.  The drive to help them become productive, happy members of our community is what really keeps me going every day.  But, it is the families of Fragile X that keep me coming to conferences. 

While I was in Miami this time, it warmed my heart to hear stories from other people about those early years.  During the banquet reception, one Dad came to me and told me a story I had long forgotten.  He reminded me of his families first conference when his 2 children were very young.  He said that he wanted to tell me how much comfort it gave him when we met one evening by the side of the pool.  His children were swimming and running all over the place, just as most kids do.  Evidently, I took his son and held him on my lap and calmed him while all along I appeared calm and collected.  It must have been one of my good days, because as I recall, it took me years to learn calm.  He said this still gives him and his wife a feeling that it will all be ok.  He said, “to see you in 1996 (5 years after our diagnosis) with such calm and contentment gave us such peace and hope for our future and the journey we were just embarking on”.  Their son is now an awesome young man that is very productive and happy.  This whole conversation and those like it are the things that keep me motivated to continue to come.  Or, another Mom that told me that “You hold the distinction for being my favorite memory of my first conference.”   It is my hope that I can mentor someone else to be there for those families that are just starting out.  I know I won’t want to do this forever….but for now, I am content.

So, my answer when I’m asked, “Do you still learn something when you come?”  Or, “What do you continue to get out of the conference?”  I can easily say that I always learn about the kindness of others, about the need for mentoring others and I always make new friends.  I have some awesome memories from those conferences and all I can say is….”What happens in Miami, stays in Miami!”  “That’s the life for me….”  In 2014, who knows what my goal will be????

It's All About the WHO

They say, “It’s who you know…..”.  In the scheme of things, it’s the, who, what, where when, why and how.  Anyone that knows me knows that I spend a great majority of my time focusing on the “WHAT” and “HOW”.  These elements are extremely important when you are raising 2 sons affected by Fragile X Syndrome and Autism.  We’ve developed ways and approaches for personal care, work tasks and recreation, among many others.  But, in reality, we’ve learned that it’s the “WHO” that really matters.

When the boys were born and later diagnosed, we were not blessed with the convenience of having family nearby to help us manage the day-to-day.  They’ve been outstanding morale support, but lived a 2-days drive away!  So, it was up to us to come up with ways to get a break without the boys in tow.  Many of our friends from school were still in college when we had our boys, or they were just starting out on their career path, so they could not possibly relate to our situation.  One of the many pluses for us was the fact that we lived in the same house for many years; therefore, we had a good knowledge of our neighbors.  One of the first real established relationships we gained was with a neighbor couple.  Their kids were older, but they had “been there” and understood the need for a break.  Little did we know how important these people would be in our life.

During our boys’ school years, there were also many “WHOs” that played an important role.  Some without the knowledge or acquaintance of the boys themselves.  In Jake’s (our oldest son’s) very early years, we became familiar with an important and very kind gentleman known as the School Advocate.  His love for kids with disabilities was generous and giving.  He helped us make decisions that we had no basis or knowledge of.  These decisions would shape the future years of our boys’ educational lives.

Throughout their lives, the boys received the hourly equivalent of years in service by doctors, therapists and teachers.  Looking back now, I can say that, if we had to be diagnosed with Fragile X, Denver was the perfect place to be.  This is not just “taking lemons and making lemonade”, but the truth when it comes to service providers.  Two very special individuals have molded and continue to mold and hone people throughout the world when it comes to Fragile X.  Tracy Stackhouse (world-class O.T.) and Sarah Scharfenaker (world-class Speech Pathologist), are one of the main reason I am still standing upright today.  Their ability to identify, assess, diagnose and treat any challenge is an understatement.  We still affectionately call them “our Fragile X Saviors”.  This is not a title I assign lightly.  To call them our friends is an honor.

Along about 3^rd grade, there was also a Special Education Teacher that shared her knowledge and expertise in an effort to really make a difference and allow Joe (our youngest) to thrive.  Thriving was not Joe’s strong suit in 3^rd grade, but he became a real participant in the community called school during her tenure.  It was a rare scene.

I remember clearly, another lady who made a subtle, but long-lasting impact on Jake’s life.  She was a paraprofessional when he was in 5^th grade.  She was able to see through his disability to his heart.  She understood his quirky sense of humor and his desire to participate even though he was not a communicator.  One day, she insisted on coming to the house, picking Jake up in her super cool convertible, and transporting him to his favorite place…..Taco Bell!  To this point, he had never been anywhere except school, without us.  He did so well, despite our inability to let go and allow him to practice these skills.  It was extremely scary to allow someone else to be in control during these years.  There were way too many uncertainties for us to even take that chance!  What if something happened during an outing?  What if someone didn’t know what to do or what Jake was saying???  We just could not take that chance to this point! 

Along the way there were countless other students that had kind hearts and gave their time to befriend our boys.  These are too many to name one-by-one.  One that deserves special mention is a young man named “DB”.  “DB” has a very strong family and a giving nature.  He started to mentor both of our boys when the opportunity came up for him to participate in Special Olympics basketball.  To date, he has been Jake’s personal basketball mentor for more than 5 years.  Even though Jake has to be coerced into playing and sticking with it, “DB” really hung in there.  Through his tutelage Jake has been able to go from a “participant” to actually making baskets!  He is very special to our family.

During Joe’s high school years, there were several, powerful, impactful forces that guided him.  These were so meaningful and personal for Joe, that it is difficult to describe them.  Joe was going through puberty and trying to learn “the ropes”, which made for a challenging and stressful Joe.  Having a teacher that understands the struggles you face each day, being able to shape those challenges into successes and then to adopt them in everyday life, is rare.  But, Joe was the lucky recipient.  His high school years were the real pillar in his development for adulthood.  Specifically, 2 individuals, made a huge difference.  One Special Teacher and one Special Paraprofessional were his Angels. 

During high school, both boys really started to come into their own and begin to develop work skills.  The people that took a forward-thinking approach to teaching and helping them to succeed still resonate today.  As Jake and Joe graduated and we saw the need to move on, we also had to figure out how to enroll others in that scenario.  This is a scary and very necessary detail.  It became very clear that for them to work and travel their community could not be done without some kind of supervision.  How would we incorporate this necessary element into something that was as meaningful as work?  It all came down to the “WHO”?

Chris and I often talk about another gentleman that made more of a difference than he will even know.  This guy was the one that cut and styled my hair for years.  As we approached a time when we knew we would have to eventually teach Jake to go to the Salon, he was our guy.  I asked him if he would be willing to work with me on teaching Jake the approach.  I use a 3-tiered approach that includes 1. Person 2. Task and 3. Environment.  He was the person and the task.  Jake would be familiar with the environment (home).  So, he agreed that he would be willing to come to our home each month to give Jake a haircut.  Little did he know that he would commit to doing it for 4 years!!!  Finally, Jake showed us that he was ready to move to the Salon.  He was familiar with the task now and the person, so that should be no big deal.  It wasn’t.  Today, Jake is able to go a completely different salon, have a different person (also a hero) give him a shampoo, cut his hair, and he pays all by himself.  THIS IS HUGE!!! 

In retrospect, we have been the luckiest people I know!  Good and kind people have been all around us for as long as I can remember.  One such person is a young lady I will call “A”.  “A” started working for us during summers about 5 years ago.  She was a high school graduate that wanted some extra income during her summers.  We needed a good care-giver, so the match was made. After 5 years, she has become such a crucial element in Jake’s life, no words could possibly describe it.  “A” has been there as a daily provider, confidant, and a good friend to Jake.  She guides him through the aspects of his day and does it all with grace.  She exhibits such a calm and persistence that no one else could.  No gift is greater than this.

As Joe finished high school and was ready to move on to “adult life”, we were lucky enough to utilize one of the paraprofessionals from school for the first summer.  He was one of the special forces that had taken a liking to Joe during these years, and that friendship continued.  Once Fall came, we had to breech the subject of a new person.  Through what I like to call fate, we were fortunate to find a young man that wanted to give working with folks with disabilities a try.  Oh, how fate is my friend.  We will call him “DM” for purposes of this blog.  “DM” is an amazing man that possesses the rare qualities of kindness, patience and coolness.  All of the traits that Joe adores.  It is a miracle that he entered our life, and continues to be a vital force. 

Having some time away from the boys when they were little was as critical as breathing.  No one can care for and oversee the care of 2 very involved, complicated kids and not get a break---at least and survive!  In a sense, we felt like there really was no one that could do the exact job that we did.  But, what we learned is that, we shouldn’t expect it.  When they were in school, life was somewhat easier to manage, and in turn, it was easier for someone else to take the helm.  Getting them ready for school, feeding them, clothing them….that could be transferred.  Get them on the bus, and then they are in school until late afternoon.  Get them a snack, dinner, bath and off to bed.  All doable.  But, it would require a special, patient person.  We had that in our neighbors.  They, more than once, took over and provided every essential need, and spoiled them to-boot!  We cannot possibly express our full gratitude for those years.

For the past 12 years, we have solely focused on the “what” and the “how”.  We’ve implemented life skills, a sensory diet including self-regulation, taught them how to take care of themselves, and how to be productive at a job.  The one thing we forgot, or, shall we say, neglected, was our own ability to get away.  This was not intentional, but merely a result of the situation being what it was.  Ok…..maybe the fear built up and up over those years and we became comfortable in the “not having a break” scenario.  What we realized was that the longer we allowed ourselves to NOT do it, or made excuses NOT to do it, the easier it became.  As with all things in my life, challenges must be overcome.  I knew HOW to do it, I just had to take the first step.  Initiation is not an easy task. 

Once we made a plan for the “WHERE” and “WHEN”, the decision on the “WHO” was fairly easy.  “A” has an amazing Mom we will call “C”.  “C” has helped us during the summertime before, too, and both of these ladies are simply friends of the family.  Even the best of friends probably didn’t know all of the details involved in caring for the boys during a full 24-hour period.  This we knew.  This we were realistic about.  The reality made it harder.  When the guys were young, it was just a matter of going through the motions to provide every need they had.  Now that they have become adults, the awareness and dignity have shifted.  We knew that “A” and “C” would be the perfect candidates for the task.  Once they agreed, we put the wheels in motion.  Thankfully, the “WHEN” was 5 months away.  Together, we formed a plan of action and implemented it.

Today, as I sit on a tropical beach writing this, I ask myself, “What price could possibly equal the value of these gifts we have received?”  Or, “How would our lives (all of us) be different without these people that have had such an impact?”  I cannot formulate an answer.  These are such grand gifts that they cannot be valued.  They cannot be measured with any human form of measure.  We are truly grateful and humbled by all of these people that have contributed to the life and well-being of our boys.  In all of the things that others consider important, I believe it’s the “WHO” that truly makes a difference in all aspects of our life.  Our family has grown exponentially and in a way that cannot be measured by simple means.  Except if you are counting……angels.