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 3rd 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 3rd 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 5th 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.