Isn't It a Lovely Ride?

It's been more than two years since I added to this blog. I can tell you that time has not been wasted and it's been quite a ride.

First, Matt is doing well. Although he still shows symptoms of Alzheimer's, the course is slow, and for that I am grateful.  He continues to inspire people who take the time to get to know him. I like to think some people get to see his soul, while others are too busy to notice and miss out on the gift of a lifetime. 

Since I last wrote there have been some sad developments in our lives. We lost our dearest, life-long friend to Lymphoma in February 2016. And one of Matt's supports has had a series of significant health issues. She has been a major part of his team for more than fifteen years, and is not just staff to Matt. We are devastated by the issues she now faces. As a result, much of the stability that Matt (and I) had come to know is gone. Yesterday we had Matt's annual meeting to plan for his Medicaid Waiver services for 2018. It was a difficult and very emotional time. As we attempted to work through some communication problems we realized that each of us love Matt dearly and that this transition to a different way of supporting him is more difficult for us than it is for Matt (translation: I'm not handling the changes in Matt's supports very well, it seems).  He, long ago, learned (or maybe he always knew) to be in the present moment and only contemplates what's next in his day. He doesn't get hung up on the "what ifs" in life and doesn't think too far into the future...something I've learned can be anxiety producing, but I still do it. In addition to his primary staff's health concerns, the staff who accompanies him to his VA volunteer job was involved in an automobile accident last week. Matt was with her and was not injured, however she was and we are not sure if or when she will return to work with him. So, Matt is unable to do the one thing he loves most - bring smiles to the service men and women he sees every day.  This is a huge disappointment for me because it has been an important part of his life for nearly seven years.    

But not everything is awful. When I last wrote I could not have imagined how much richer my life would become. I have long believed if I am quiet and do not resist, something good will unfold before me - even in the darkest times. I think that is why I especially love this verse from the Bible, "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Over the past two years I have met many families who are on this journey with someone they love who has Down syndrome and Alzheimer's. As I have been on this ride, the number of families who have joined the Down syndrome and Alzheimer's Dementia Capable Support Facebook group has grown. I have read the stories, sometimes heartbreaking, of families all over the globe who are doing everything they can to ensure the life of their loved one is rich and full - even to the very end. 

About eighteen months ago I was given the opportunity to start a national online support group for family caregivers. We chat monthly and share the struggles of our journeys; we also share tips for some of the issues that arise when dealing with Down syndrome and Alzheimer's. Our loved ones vary in ages and where they are in the progression of Alzheimer's. We have a professional present a topic of interest periodically to provide up-to-date, practical information that can be used in our daily lives. 

This past March I started writing a bi-monthly newsletter for our family caregivers. To my astonishment, it is disseminated and read worldwide. My connection to families continues to grow every week. These activities prove to me that we need each other and I feel blessed to be able to facilitate these associations. It is humbling and gratifying knowing that together we can make a difference in our loved ones' quality of life and find comfort in the bonds we make.

In February, I attended a conference hosted by the Down Syndrome Association of Central Florida. One of the speakers was a doctor I had frequently heard about in conversations with NTG colleagues. In his session, he read excerpts from a book he has written. One of the stories is of a young man who wanted to travel to California to meet the stars of Baywatch.  Although his family didn't think much of it, he worked hard and made it happen and the result of that dream was bigger than even he imagined.  As I drove home from Orlando to Clearwater, I reflected on how wonderful the conference had been for families of little ones and school-age kids. My thoughts turned to a time when I used to put on conferences and I decided I wanted to create an event for adults with Down syndrome and their families.  There are many changes when our kiddos leave the safety of the public schools and we encounter an entirely different world we must learn to navigate. Not only do we need to know about adult options, but some of us are at a point where we are looking at older age and may even be dealing with end-of-life issues. Somewhere along I-4, between Orlando and Lakeland I gave birth to my "Baywatch Dream."   

Just as this young man had a dream that grew bigger than he imagined, my dream is doing the same. In June, I shared my vision with my friends at the NTG and Sara Weir, President of the NDSS. They were eager to support the development of my dream and we are now deep in planning for the Down Syndrome Adult Summit to be held at the Westin Gateway Hotel in Arlington, VA on April 9 and 10, 2018. The summit will focus on areas of interest to both young adults with Down syndrome and their families, as well as those of an older age or dealing with Alzheimer's.  It is rewarding and exciting watching my dream unfold and come to life.  

Because I have the lead on this project I was presented with yet another incredible opportunity. Just last week I participated in the NDSS Leadership Summit where I got to meet some remarkable young people with Down syndrome and their families, visit the Gettysburg Battlefield, participate in training conducted by the Lincoln Leadership Institute, and speak with Florida Congressmen. But that's not all! The highlight of that trip was getting to be part of the most amazing dining experience in a 5-star pop-up restaurant where all the staff were young adults with Down syndrome. The entire experience touched not only my heart, but my soul, as well. 

I can say that Matt's diagnosis of Alzheimer's, although hard to think about, has offered me so many rich and fulfilling opportunities. Even though life is filled with twists and turns along the way - some that are painful, some that send us spinning, and some that make us dance - life is good and it is such a lovely ride!

"I Will Because I Said I Would!"

Several months ago, I joined a Facebook closed group for caregivers of people with various types of dementia. I did it because I have an aunt with vascular dementia for whom I have Power of Attorney and who I adore like my own mother who passed away in 2002. I have a long-time friend who has Alzheimer's  and her husband is caring for her (as he fights Lymphoma) and his 97 yo m-i-l with dementia of some type...probably vascular.  I also have a friend who is caring for her husband with Alzheimer's. And I am the mother of a 40 year old son with Down syndrome who has been showing more and more signs of Alzheimer's.  

I have learned a lot from these wonderful people. Sometimes what they are going through is totally foreign to me because I do not provide the daily care for my son. No matter, my heart is with him every day. As a result of seeing the comfort they were getting from having a place to vent, a place to share an occasional funny story and a place to just be with others who live a similar life, I started a similar FB group for caregivers dealing with Alzheimer's in son's and daughters with Down syndrome. It is still very small, so I chose to share what the past 18 hours have been for me. 

Following, is most of what I wrote to them, "Matt has had so many struggles and challenges. In addition to Down syndrome he has many other diagnoses, some neurological, some mental health...he has been following the path of premature aging common with our guys with Down's. The symptoms of Alzheimer's have come and gone so it has been easy to deal with because there is always this irrational hope that maybe it isn't really happening. 

"On Wednesday, I shared Matt's life story with a group of parents and professionals in Tampa who are interested in providing better support to those with this dual diagnosis. (People with DS are at highest risk for Alzheimer's because of the extra 21st chromosome.) I learned that day that Matt had moved from getting confused about dressing, to needing his caregiver to lay his clothes out, one piece on top of the other so he puts them on in the correct order. It is another realization that this disease Is moving forward.  Another difference with folks with DS and Alzheimer's is that the Alzheimer's progresses rapidly for our loved ones. For some, the time between onset and death is as quick as a couple of years; for others, maybe 6 or 8 years. I don't know when we count the beginning in Matt because the doctors have given a less than whole-hearted diagnosis... (something like, 'well he has Down syndrome, so it is inevitable.') 

"Last night I started having an anxiety attack..it is full blown today and I can't stop crying. Later this month we will finally have an opportunity to take him to Ft Lauderdale for a comprehensive evaluation of all systems, hearing, vision, everything to get a real handle on where he is and where we go from here. I know I am scared of what I will learn. 

"He has been such an important part of my life. He has been my teacher and my baby at the same time. He has brought me heart ache, challenges and such intense joy. I am the one who helped him learn to walk; I am the one who helped him learn to form sounds and words; I am the one who taught him how to feed himself; I am the one who changed 9 years of diapers to finally accomplish toilet training. I am the one who fought with doctors and teachers to make a life he deserves. And I am the one who still fights for him to get the appropriate services he needs. I have watched him grow from a small baby, unable to suck, to a beautiful toddler and then a troubled teen. I watched him struggle in the adult world until he found a life that is meaningful to him, volunteering and bringing cheer to sick veterans at the Bay Pines VA center in St. Petersburg. I am the one who fought the system so he could have a home of his own instead of living in a group home...and now he has staff who are part of our family that he loves every bit as much as he loves his birth family...and  now I am helpless as I watch it all fade away."

I decided that what I wrote has to be included in this blog. I know it is raw; I know it isn't pretty. But Alzheimer's isn't pretty. I believe God has led me to take this torture and spin it into silk. I will take my pain and use it to help other parents who are facing this deadly disease. I will take my experiences to help professionals understand the pain we feel as we watch our sweet and vulnerable children (who are now grown sons and daughters) lose everything we worked so hard to achieve. I will do this because I believe that this is the purpose God has given me. He has placed the right events in my life to prepare me; He has put the right people on earth and led them to cross my path at the exact time they were supposed to. It is now up to me to fulfill my purpose as I help Matt age with dignity and all the love he deserves, surrounded by all the people who know him and love him as I do. An it is my purpose to take what I learn and give it freely to other parents, and brothers and sisters. I will do this because I can and because "I said I would." (Thank you Dr. Tom Buckley, for teaching me that; thank you Tom Buckley, Sr. for showing how it can be done as long as you have heart.  Through my heartache I will remember that always!)

...And the Emotions Hit

About two weeks ago I had an Alzheimer's emotional overload. That Monday, I read on Facebok of a dear, sweet friend who had to place her beloved husband into a nursing home. He has been diagnosed with Lewy Body dementia. This was a brilliant man, one of the pioneers in implant dentistry in this country. He is the love of my friend's life, and she is his. Every picture of them exudes the love between them. Both are Christians who not only speak their faith, but model it in their every action. And now, he no longer recognizes his family and is in need of total care. When I read of my friend's experience, my heart broke for her and her husband. Half-way through the post, I was crying so hard I could barely see the words.

That evening I was worn out and decided to go to bed a little early. I use the quiet noise of the television to lull me to sleep so I searched for something to watch and listen to. I settled on what appeared to be a sweet love story. After it was too late, I realized it was the movie, The Notebook. Before I knew it Allie realized the story Duke was reading was about them. She realizes she won't have long to be with him as they dance and declare their love once again. Suddenly, she loses the memory and becomes upset and combative. Shortly after this scene she passes away, no longer remembering the love of her life.

Throughout  those final scenes, I started crying and then sobbing. I felt my chest would cave in from the pain in my heart. The day had already been very emotional with the news from my friend and the movie was just too much. I was trying to deal with a realization, a reality, that at some point in the future Matt may not (and probably will not) know who I am. That thought is beyond explainable, is excruciatingly hurtful. And it has become a thought that I can not shake as I have moved through the week.

I was filled with busy work that week, finishing up sewing for a very special wedding that was in less than 10 days. No matter how much I did, I could not release the sadness I feel over this terrible, awful, no-good disease.

Dementia Capable Care

About a week ago, I was asked what would be the most help to me as I learned about Matt possibly having Alzheimer's Disease. My response was not clear, I am sure because my thoughts aren't necessarily clear. I remember those days last summer as I came to realize that Down syndrome and Alzheimer's eventually go hand-in-hand. But, where was Matt on this intrepid trail? I didn't know which doctor to approach with the questions I didn't yet know to ask.

I have come to learn that Alzheimer's Disease looks the same in everyone who has it, while, at the same time it looks different. I have read everything I can find to learn about what lies ahead. And it scares me. When I read about someone's parent saying, "I don't belong here. I don't belong anywhere," my heart breaks. If Matt ever has those thoughts, he won't be able to tell us.

Wow! Those words were written in January. They were a second attempt to create another blog entry and for some reason, I just couldn't complete it. I was going through a period of processing what I had been discovering...and spending way too much of my time in the future. I was visualizing the difficult life that is ahead for my beloved son. It reminds me of those early years when I first learned that Matt had Down syndrome. Every thought seemed to be filled with sadness and fear.

And, as it happened when Matt was young, I have bounced back with more resolve to continue to create a happy, healthy life for the person who enriched my life beyond any measure. In the days and months since those incomplete attempts to write, I have continued to read everything I can find that will help me support Matt in a dementia capable environment. I have focused on Matt as he is now and made a promise to him that I will never give up, I will never stop advocating for the best life he can have.

Shortly after the switch to daylight time, Sandie and Kandie reported to me several serious incidents. During those times, he was self-injurious, and charged at the ladies. It appeared we were all in for a repeat of the painful period he had last spring and summer. Only, we couldn't let that happen...to him or his capable, caring and loving staff. Fortunately, I had an opportunity to attend an incredible two-day training with Joe and Matt's Behavior Analyst, Tera. We learned even more strategies to support Matt and we are hopeful that we can put things in place that will help him stay calm, help him remember daily living skills he worked extremely hard to learn, and help him enjoy his life.

Yesterday I met with his incredible team. We also were gifted with the participation of two fine, young men who are the first Dementia Care Coordinators in the nation. Drew and Ben conducted a home assessment to help us find places that we can adapt or make simple changes to create a safe, environment for Matt as he travels this Alzheimer's path. As the Alzheimer's progresses, Matt will need more support. Currently, we are struggling with the Agency for Persons with Disabilities, the entity that provides Medicaid Home and Community Based waiver funds. Matt has had an increase in doctor visits and we have been successful in getting additional hours for the staff who accompanies him to those appointments. He has a need for additional supports so that he can be engaged in some activity during the day. Without that support he chooses to just sit in his chair and watch a movie over and over. We have learned that for optimal brain functioning he needs hydration and movement. In addition, he needs those hours so that Sandie can have a break from the care that is continuing to intensify. Research shows that respite for care givers is essential to a safe and healthy outcome for a person with Alzheimer's. Unfortunately, the state doesn't yet understand this. Matt is also needing more support time from his Behavior Analyst. She has a pretty intense behavior plan in place; previously we were attempting to reshape his behavior and now we are focusing on helping him maintain skills and communication that will lessen frustration, anxiety and depression. As his condition worsens and he loses more memory, it will be necessary to provide more visual cues for him. It is Tera's job to develop those picture cards and train all of the staff who work with Matt on how to use the cues and support him most effectively. We have been denied an increase in the behavior services and I know it is because the state does not fully understand the connection between Alzheimer's and Down syndrome and how it is definitely a medical issue. Every aspect of Alzheimer's is related to brain function that touches on every system in Matt's body. If that isn't a medical issue, I don't know what would be.

So our team met, we discussed strategies we can put in place now, ideas for the near future and touched on what we will do as the Alzheimer's diminishes Matt's abilities even more.

And, I have had some personally fulfilling moments, as well. I have mentioned the National Task Group (NTG) on Intellectual Disabilities and Dementia previously. This very dedicated group of professionals is a part of the American Academy of Developmental Medicine and Dentistry. The NTG works to ensure that people with Intellectual Disabilities are included as part of the National Plan to Address Alzheimer's Disease. The NTG is the group that my mentor, Tom Buckley has been working tirelessly with and where much of my "schooling" has come from. The training that we attended was developed and presented by this group, as well. Following the training, I decided it was time to join them. I am hopeful that by the end of June I will become a certified trainer of this curriculum. The day after I completed my membership application, I received a call from Dr. Seth Keller, co-chair of the NTG. One of their work groups is focused on advocacy and caregiver support and he wanted to know if I would be interested in joining a conference call of a core group of people interested in this area. Would I? Oh my yes! My entire professional life was devoted to supporting families as they navigated the world of disability and I am immensely excited to pick up the torch of advocacy and support once again.

Just a couple of days before I joined the NTG, I created a closed group Facebook page for caregiver support. It is called Down syndrome & Alzheimer's Dementia Capable Support. It is my hope that this will be a forum for those who are providing care to persons with Down syndrome and Alzheimer's will feel safe to share their feelings, ask questions and provide support to each other. Check it out and if you would like to join the discussion, request membership in the group. I am checking the profiles of people before I accept them in the group; it's the only way I know to make sure we aren't getting trolls or  unsavory types.

So that brings you up to date on our travels down the Alzheimer's highway. In future blogs I will share with you some of the excellent strategies and great information the NTG has created.

Could This Be Alzheimer's?

This post has been difficult to start. Nearly six weeks ago I met with Matt's team and Tom Buckley, who has become my Down syndrome and Alzheimer's dementia mentor. I met Tom shortly after I moved to Clearwater and was serving on the board of directors of UPARC, a local program for people with developmental disabilities. Tom was selected as the executive director during my time on the board. He has dedicated his life to people with disabilities and currently works at The Lucanus Center in Hollywood, Florida and is co-chair of the National Task Group on Intellectual Disabilities and Dementia Practices. (http://aadmd.org/ntg)

Tom has helped Joe and me begin to understand that Matt is not displaying "behaviors" that are aggravating and frustrating, but exhibiting symptoms of Alzheimer's dementia. Each time we talk, I see more clearly why the neurologist diagnosed early dementia nearly two years ago. So many of the symptoms are subtle; before we had the information Tom has provided we often thought that Matt was just being stubborn or extremely slow. Now that I am learning more about Down syndrome and Alzheimer's, and am recognizing Matt's symptoms, it can be overwhelming to think about for very long. It took me over a month to look at my notes because the team had discussed things we are seeing and that are clearly characteristics of Alzheimer's in people with Down syndrome.

When the team met, one of the first things Tom inquired about was the changes we have seen with Matt. Tera, Matt's Behavior Analyst was actually the first to notice the subtle changes. She has worked with several individuals who have Down syndrome and Alzheimer's dementia. She stated that she has been noticing changes over the past three years. He seemed to be more agitated, especially in the Fall of each year. 

Some of Tera's first observations occurred during his time at the VA Center. Matt has worked there for almost 4 years and has always enjoyed the time with "his soldiers." His work day usually lasts from about 9:15 a.m. until 3:00 p.m. His responsibilities include writing his mark on thank you cards that he then passes out to the veterans. Sometimes, the social worker will ask that he visit specific patients. He loves signing "hello" to the patients and those he meets in the halls. He has certain patients that he visits regularly, and on occasion, has not been able to when it was the designated time. That small disruption to his routine has caused extreme agitation, complete with vocal noises and huffing and puffing. Usually there are not a lot of expectations placed on Matt at the VA Center, so, fortunately,  it does not happen often.

More recently, Tera has observed Matt signing "movie" while he eats his lunch. Matt's signs aren't always literal and this communication is more that he is ready to end his day, go home and have some quiet time. He is often ready to leave as early as noon or 12:30 p.m. She has also seen an increase in Obsessive Compulsive behaviors. She watches as he prepares to knock on a patient's door; he puts a stick or some other object in his hand then goes to knock. He will repeat this several times before he actually knocks on the door. When he gets anxious, he displays more tic behaviors...turning his head, rocking on one foot, licking his fingers.

He has also shown less interest in some of his favorite activities, one of them being swimming. (His current home was chosen because Matt has always loved having access to a pool and he spent much of his free time in the water, happily splashing anyone who mistakenly got in the "zone.") This past summer, he had to be coaxed to go outside and would stay in the pool only for short periods of time. Part of his evening routine for several years has been to walk Mia, the family dog. More recently, he has chosen to not go on walks and has even stopped running with Mia in the park.

Sandie, his in-home support staff has told us that he now needs more prompts to do tasks he previously completed with relevant ease. In the past, on laundry day, he would gather his dirty clothes, take them to the laundry room and put them in the washing machine with one prompt. More frequently, he will make it to the washer and just stand there. He has had similar experiences brushing his teeth and getting dressed. He has stopped in the middle of the task and has just stood with a blank stare on his face, as if he had no idea what he was supposed to be doing. 

Tom explained to us, that what Matt used to complete relatively quickly now takes longer because it takes longer for him to process. While we may be waiting for a minute or more, to Matt it seems to be a nano-second. Tom uses an analogy I have shared with several people since the first time I heard it explained this way. 

The protein that is created in the 21st chromosome is evident in the plaque and tangles in the synapses of the brain. It is the plaque that slows the processing down. Tom talks of memories being books in a library. When we are young, we can easily maneuver throughout the library to retrieve the "book" that has a particular memory. As Alzheimer's progresses, it is more difficult to move through the desks and chairs and shelves to get to the particular book we are seeking. And sometimes we forget we were looking for the book. A few minutes later, after our brain has reset, we may try to retrieve the book again. (For those of us who are caregivers, this is where we may see our loved one repeating a question, or claiming they have eaten breakfast when they haven't.)

Alzheimer's is a devastating disease that will rob Matt of his memories and us of the love and companionship we once knew. When I think of this, I get very sad. So I must focus on what we can do to help Matt have the very best life for the rest of his life. Tom, the National Task Group and the folks at The Lucanus Center have learned that by creating a Dementia Capable Environment, the effects can be slowed. Here are some of the things Tom has told us we can do to help Matt now.

• Recognize that we are seeing symptoms of Alzheimer's and not behaviors that need to be changed.
• Keep tasks as simple as possible so that Matt can do as much as possible on his own. If he loses purpose in his day, he won't have a reason or desire to get up each morning.
• Structure the environment so it is not complex. Leave only a couple of items of clothing in his closet for him to choose.
• Never lower expectation for Matt. Ask questions in ways that he can answer them. Retrieving words and forming them into speech or signs is a complex task so "Yes" or "No" questions may be all we can get.
• Watch what is said in front of Matt...or within his hearing. Even though he may not have the capability to "speak" to us as he has in the past, he is aware of what is being said. 

Matt with Kandie (left) and Sandie (right)

One of the most important things I have learned, thus far, is that Matt needs to be able to age in place. He needs Sandie and Kandie. They are the people he is used to spending his day with. He needs his "job" at the VA Center because it is important to him and gives him a sense of worth. He needs his team to advocate for him; Michelle has been his friend for over 15 years and knows a lot about what Joe and I want for him, and Tera has been a caring and innovative member of the team, as well. Matt also needs his family to be close to him. We have noticed that he is having memories from when he was a little boy and Joe and I help the rest of the team recognize why he is reacting in a very different way than usual. And he has recently seemed to really need time to snuggle with me and to have me sing his favorite childhood lullabies.

Over the next few months Matt will have the opportunity to work more directly with members of the National Task Group as he becomes the first person with Down syndrome and Alzheimer's to work with the memory centers on the west coast of Florida. There is so much to learn and so much to do; with the support of many people we are working hard to make sure Matt ages with dignity. He deserves that and decidedly more.

 

Finding a Meaningful Life

In my last post, I introduced you to young Matt. There is still a lot left unsaid and maybe that will be part of other posts (or maybe a book, as some friends are encouraging me to write). As I type I find many bits and pieces, when put together, create our wonderful man. There is a picture floating around on Facebook that says something to the effect that the events of our past build who we are today. I believe that to be true. One of the hardest lessons I learned...and sometimes still struggle to remember... is that everything happens at the right time, in the right place in our lives. If we are open and don't resist we can learn important life lessons. It is one of the biggest gifts I have received sharing my life with Matt.

The year before Matt left public school we had an opportunity to develop a P.A.T.H. for him. P.A.T.H. is a planning tool that was originally developed for people with disabilities to see a promising future; in fact the letters stand for "P" Planning, "A" Alternative, "T" Tomorrows with "H" Hope. Matt had been labeled Profoundly Mentally Handicapped by the education system. At the time he left school, there wasn't much offered for him. He could attend a day program and live in a group home...neither of which seemed to be an appropriate fit for him.

I had noticed that the problems that were reported to the psychiatrist seemed to all happen when he was with a group of kids. He always did well at home with just the four of us. I also noticed that the things Matt did at school weren't necessarily the kinds of activities he enjoyed. In his "senior" year (translate that to the year he turned 22) I insisted that he be allowed to participate in the school gardening program. At first, the principal and teachers were sure it wouldn't work and was a waste of time. Besides, no one at Matt's level would be in the local ARC horticulture program or, for safety reasons, be hired as part of their yard work crew. My response, "How many of you like to garden? How many of you find it relaxing and just something fun to do? How many of you want a career in gardening? Why can't this school expose all the kids to the joy of digging in the dirt (sand, in our case), the wonder of watching a seed grow and seeing their flowers bloom?" The next school year all of the kids in Matt's class were part of the horiticulture class and they loved it.

So back to the P.A.T.H. One afternoon, in the spring of his 21st year, Joe and I, one of our dearest friends,Christa, an aide from Matt's class, and our P.A.T.H. facilitator, Vicky, started a journey. Matt sat on the sofa with his legs and feet pulled up and crossed in front of him. He had a small stick, that he collected from the yard, in one hand and waved it rhythmically in front of his face. He said not a word. Vicky encouraged us to think about the most positive life Matt could have when he left school. I had talked to a number of people about what I wanted for Matt, yet I couldn't speak. Something about putting the dreams on paper made them difficult to say out loud. After some uncomfortably quiet moments, I broke the silence saying, "In the future, Matt will have all the pizza he wants to eat, whenever he wants it." Everyone laughed and the ice was broken; pieces to the dreams we had for Matt were contributed by all of us. That is, all but Matt. He sat, saying nothing throughout the two hours it had taken us. Vicky reviewed our work and told Matt that we thought he should have a home of his own with a flower garden, and eat as much pizza as he wanted. Suddenly, he raised his hands above his head and shook them like a fan at a football game whose team just made the winning touchdown. I then was certain that I really did know Matt and understood what he wanted in his life. It was an extremely validating experience for me.

A couple of days later, Matt was taking a bath. I tried to get him to wash his hair. I put a little shampoo on the top of his head and said, "Matt, wash your hair," and showed him what I wanted him to do. He sat with his hands in the water and looked at me as if he didn't have a clue what I had just said. This went on for several repetitions, when in desperation, I said, "Matt, if you ever want to leave home and not have Momma always telling you what to do, you need to wash your own hair." That did it and he shampooed his hair for the very first time at age 21! Another validation that the P.A.T.H. captured Matt's dream for his future.

Matt left public school in 1996. For over a year, his father and I paid privately so that he could attend a community program two days a week. He wasn't especially happy there, but it was all we could do at the time. The program did allow Matt to get outside some and on those days, he seemed happiest. I was still dreaming of the perfect day for Matt. When he finally received funding through the Home and Community Based Medicaid Waiver, we were ecstatic! With that resource, he would be able to live in a home of his own and do something he enjoyed five days a week. It had been nearly a year and a half since he left public school and he seemed happy to be looking for a his first home. We found an agency who hired staff to live with Matt and his roommate. Of course, when he moved out of our home, I missed him terribly. But I knew that Matt deserved to grow up and lead his own life, just as his brother had more than five years earlier.

Finding something for Matt to do during the day wasn't easy. Over the years, we worked with several providers and had staff that were to take Matt out to explore activities he might enjoy. Florida has had a supported employment program for persons with developmental disabilities for many years. Unfortunately, Matt just wasn't a good fit for that because he needed someone to be with him when he was out and away from his home. So we tried all sorts of combinations of activities and more staff than was good for him.

 For a period of about a year we hired our daughter-in-law, Christina, to work with Matt at the barn where she kept her horses. He so enjoyed that and you could see the pride in his face. He learned to follow simple instructions and do some of the chores related to caring for horses. His favorite jobs were cleaning the water buckets, sweeping the barn and throwing hay to the horses. He was pretty good at pushing a wheelbarrow full of stall muck, too. Unfortunately, that experience ended when Michael and Christina moved more than an hour north of us. We spent years looking for something that gave him that same sense of pride, and sadly weren't very successful.

Matt has come home to live with us for short periods of time when there were problems with staffing his home. It was during one of those times, about three years ago, that his companion asked Joe and me if we would mind if Matt tried volunteering at the Bay Pines VA Hospital. Joe and I were intrigued and gave her the go ahead to try it out and see if it was a good experience for him. It was the best thing we could have done. Matt loves working with his "soldier men" and the men and women appreciate seeing him. We have been told by the medical staff and other volunteers what a wonderful asset he is. At his first awards banquet, a social worker told us that he had made a huge difference in the life of one veteran. This man rarely interacted with others. However, when Matt came in to see him, he talked to Matt and actually got a smile on his face. 

Matt is always eager to go to work. Every morning, he asks his in-home support staff and friend, Sandie, if it is a work day, by signing "work" and pointing to his uniform shirt. He works five days each week at the VA hospital. He would go everyday if he could. Congressman C.W. "Bill" Young formally thanked Matt for his service to the veterans. Our beautiful boy is forever honored in the May 20, 2013 Congressional Record. A copy of the text is below.

MATTHEW RANSDELL, HONORED FOR HIS COMMITMENT TO VOLUNTEER AT BAY PINES 
                   VETERANS AFFAIRS HEALTHCARE SYSTEM

                                 ______
                                 

                         HON. C. W. BILL YOUNG

                               of florida

                    in the house of representatives

                          Monday, May 20, 2013

  Mr. YOUNG of Florida. Mr. Speaker, today I would like to pay tribute 
to Mr. Matthew Ransdell for his commitment to serving our wounded 
veterans. Over the past two years he has committed countless hours 
serving our wounded Veterans at Bay Pines Veterans Affairs Healthcare 
System (VAHCS). While volunteering, he brings joy and happiness to 
everyone that he meets and works with.
   Bay Pines VAHCS provides excellent health, psychiatric and extended 
care services for over 10,000 Veterans a year as they return home and 
integrate back into civilian life. Bay Pines is made up of nine 
facilities along Florida's west coast, and provides outstanding 
healthcare to Florida's Veterans. The 3,500 staff members and 1,500 
volunteers have made it possible for the men and women that have served 
this nation in uniform to obtain the best possible care.
   Matthew is just one of those 1,500 volunteers, but he stands out for 
his exceptional service to the facility and its patients. He has 
dedicated over 1,000 hours of his time, in the past two years, to 
volunteering. During this time spent, he has created thousands of 
smiles for both patients and staff. He makes people smile with anything 
from a simple thumbs up to his signature ``happy dance'' that he has 
perfected in his time at Bay Pines VAHCS. Everyone, from patients to VA 
directors, dances with him. In addition to bringing vast amounts of 
happiness, he works in the Voluntary Service storage room by organizing 
and delivering robes, books, shirts, and toiletries to Veterans in the 
medical center.
   I would like to recognize Matthew as a patriotic and incredible man 
who continues his part to serve the country. He has found a way to 
share his gifts of love and cheerfulness with the men and women who 
have selflessly put their lives on the line for our freedom. For this, 
I would ask all my colleagues to join me in thanking and commending 
Matthew for his service and dedication to our Nation's heroes.

                          ____________________

Matt has finally made a life that is beautiful and very meaningful to him. He rents a home in the community and shares it with the family he has made. Sandie and Kandie are his house-mates. They may work for him but they are more than staff. They are family in the truest sense of the word! Matt works by giving back to our veterans. It is the way he serves his country, just as his dad and brother have. For these reasons and others I am saddened as I watch what aging with Down syndrome is doing to his life.

Like a Puppy Dog?

After my first post, I thought it is important that readers get to know who Matt is, because he is so much more than all his diagnoses. Before I share what is happening with Matt as he ages, I want to tell about his life that brought us here. 

When Matt was six weeks old, our pediatrician called and asked that both my husband, Joe, and I meet with him the next day to discuss the results of a test that had been done in the hospital. We were shown some photographs of the additional piece of the 21st chromosome; in medical terms we had a baby who was "Mongoloid," the label in vogue in 1974. We were encouraged to place Matt in a state institution that same day, as some pretty low expectations were set for Matt. Dr. K told us that Matt would never be toilet-trained, would never learn to feed himself, would probably never learn to walk and would always be a burden. We were told that having Matt in our home would cause psychological problems for our older son, Michael, and would put so much stress on our relationship that we would eventually divorce. Dr. K. said, "These children are just like puppy dogs; the longer they are around the more attached we become to them."

We didn't listen; Matt stayed in our home where he belonged. He was a beautiful baby and an adorable toddler. Many people had trouble believing that he had Down syndrome. He was so easy to care for and everyone who saw him fell in love immediately. We lived in Ft. Benning, GA when Matt attended a preschool program for children with disabilities. He left our home a tiny boy, secured in a plastic car seat and I was sure he would come back to me filled with new skills and a large vocabulary. During his year in this program, he was in a bus accident. It took the Army Transportation Group hours to finally reach us and tell us that our "baby" was at the emergency room at Martin Army Hospital. When we arrived we learned that the mini-van had been hit by a logging truck; I didn't want to ever let go of my little guy again. The next day I started advocating to get him into a kindergarten program for children with mentally handicapping conditions. It was a tough battle, but Matt started school the next fall. By then he had stopped using any of the single words he had learned. He began flicking his nose with his right index finger, sometimes so much that his little face looked like it had a very red strawberry sitting on it. I tried to get him to stop that injurious behavior and finally succeeded...only to have it replaced with him tapping the edge of playing cards with the tip of his index finger. I learned quickly that eliminating one repetitive behavior would only lead to another one.

When he was three years old, Matt took his first steps. He was physically small and it was another three or four years before he could walk very far; in fact, his kindergarten teacher would carry him from the classroom to the cafeteria every day at lunch time. We were stationed in Germany when I proudly sent an announcement to my girlfriend to share that Matt was finally toilet trained at age nine. There had been a lot of yucky diapers and I was ecstatic to put that delightful chore behind me.

Matt learned to feed himself, too. His favorite meal was canned Spaghetti-O's eaten not so neatly with his favorite spoon...the one the previous owners of our house lost under the kitchen stove. I debated for a couple of weeks about contacting them to return it, but when Matt would only eat with that spoon, I couldn't take it away from him. We kept a rather large piece of clear vinyl under his chair for many years, just to keep the mess somewhat contained. By then, we were pretty attached to Matt and we had adopted a rather large puppy from the SPCA. Our floppy, clumsy yellow lab, to whom we were also attached, quickly found a job cleaning the plastic of all the tasty morsels Matt dropped on the floor.

Based on the relationship Michael had and still has with his brother, I don't believe there was any psychological damage done. Yes, Michael missed out on getting both mom and dad to attend his baseball games and there were times we needed Michael to keep an eye on his brother because we had no one else to call on. I never knew for sure what Michael felt when we had to place Matt in a residential school while we were stationed in Germany. I have a pretty good idea, however, because it was Michael who insisted that Matt should not live in a group home when we were making that decision upon our return from Germany. Michael was in middle school at that time and I often reflected on how difficult life is for teenagers. I was quite pleased when he told me that if any of his friends didn't like Matt or didn't want to be around him they didn't need to be his friend. All the professionals, both in Germany and here in Florida, insisted the structure of a group home was what was best for Matt, but Michael was pretty adamant when he said, "Mom, Matt deserves to live here with us. After all he is part of this family." That was it; decision made...and no psychological scars.  

Matt first developed some troubling behaviors when we lived in Germany. He broke a window in his bedroom by throwing a stuffed teddy bear at it. One night he decided he liked art and "painted" his wall with the contents of his diaper. What a smelly, nasty mess! He would clutch curtains and children's art work on the school walls, bringing them down with a quick yank. He grabbed his brother's hamster and squeezed it before I could get it away from him. Michael was, naturally, quite upset when he learned his hamster had died. 

We tried several medications to control the behaviors; each one had it's problems and Matt's reactions were not typical. The psychiatrist insisted that Ritalin was not an hallucinogenic, however, every day, 20 minutes after he took it, he would reach out and try to grab something in front of him...something that wasn't there. Eventually, Matt ended up on Haldol. Now that is a scary drug!

When we moved back to the states, we had to find a psychiatrist who would follow Matt and prescribe the medication he needed. I won't go into all the gory details, but let's just say that this doctor was afraid of Matt. When he walked in, during our office visits, he would stay very close to the wall opposite where we sat and quickly sit behind his desk. He put more value on the reports of Matt's classroom teacher than what Joe and I told him. At each appointment, the Haldol dosage was increased and Mellaril was added. Later, Matt developed a physical reaction to the Haldol called tardive dyskinesia; another medication was added. I was concerned about the amount of psychotropic drugs Matt was being given and kept reporting that the drugs were having an opposite effect than what was expected. It seemed that the more medication he received, the more troubling the behaviors became. Of course, the psychiatrist didn't listen. Eventually, I decided I had to get Matt off these medications and found out how to do it safely. Once he was drug free ( it took me about 6 months to get him off all three medications) Matt was like a different child. I had my sweet, happy boy back.