Being EXTRA While I Can

“Every parent plans to raise their child for about 18 years, set them free for 30 years and then hope they come back to help them face the final years of their own life….

… A SPECIAL NEEDS parent can sometimes plan to raise their child for 65 years and while doing so also has to prepare for the other 20 or so after they themselves are long gone.”

   A friend of mine posted this recently. A statement that we never say out loud. A reason, really THE reason, parents become advocates. So much needs to change to see this world a better place for the children we love so much; while we can. 

   Hudson was born when I was 42. To say that I have 65 years to raise him is not impossible, but definitely not likely. If I live to 92 like my grandparents before me, Hudson will be 50. And lets be honest, I am 46 and chasing a toddler around all day is fun, but naps are good! Also, new diagnosis and therapy and a full schedule of doctors appointments make for full days. Then let’s add in these needed changes and the time/energy it takes to make all this happen. I am more than capable of keeping this pace now, but I assume as the years pass, this will be a different story to tell. My daily prayer is that Hudson becomes a self advocate and that he has a voice and a passion to fight for his own equal rights. 

   My friends post went on to say this: “Let that sink in for just a moment and you will begin to understand the drive and determination that many of us have while we are on Earth. If you have never thought about that, don’t be sorry… be thankful.”

   Before Hudson was born, I was oblivious to much of what I know now. And my time to bring these changes is limited. And even as we bring great change, new things come up that set us back again. A recent study for new medication for Alzheimer’s/dementia specifically excludes all persons with Down syndrome ONLY. First of all, this is discrimination. Alzheimer’s effects the Down syndrome community more than it effects the general population. To withhold drugs and studies from my family, also opens doors to exclusion in future drugs and studies that follow this particular medication. On a personal note, I lost my aunt to this “long goodbye” disease. She was young. Any new updates to treatments and understanding of this disease is good and needed, and it is good for EVERYONE. We all believe this is wrong to exclude anyone this could help, but somehow someone gets to make these decisions and has no accountability. And it’s up to moms like me to fix it. 

   So our days are filled with love, laughter, lots of Disney movies and my own education. I can’t bring needed change unless I understand that something needs to change. I have shared with you several things over the last few months, like Organ Transplant Discrimination, Subminimum Wage, Marriage Discrimination, Down syndrome Information, Human Life Equality are just a few of things I am working on or have already made changes to. Update: Cole’s Law (Organ Transplant Discrimination Prevention) HB20, passed unanimously and will be a Mississippi Law. Thank you all for your support on this law. It is good.  As we bring these needed changes, we are always looking to the next move. We have to keep moving forward… time is important, and how we spend it is everything. 

   Another project that I am hopeful to bring to Mississippi is Law Enforcement Training of Special Needs. I would love to be our state trainer. NDSS has a program that is inclusive of several disabilities and it would greatly benefit our state to have such training. Hudson was recently diagnosed with dual diagnosis of Down syndrome and Autism. We are already working on adding in new therapy for Hudson as we learn about this new track we are on. I think of things like this: Hudson is a racer, the best in the sport. Racers visit new tracks and make adjustments along the way. I am the crew chief. I am there to see what he needs and provide it to the best of my ability. So autism is a new track. We will do a few test laps and then he will master this track, too. And, like in the Law Enforcement world, they too need to have updates to be the best at their job. Down syndrome has features that a law officer may recognize, but Autism alone doesn’t. How wonderful would to be to start with our officers who swore to protect and serve, but then share this great information will all in service? Starting is my only obstacle, but once I get going, I will most likely be training anyone who wants to listen. Would you be able to detect if a baby was suffering from Fetal Alcohol Syndrome? What if it would save the baby’s life… education is good for all of us. I am working several ways to bring this here. I will keep you posted. 

   As we learn more about Hudson and who he is, one thing is for sure, he is worth my very full days. He has me smiling before coffee and belly laughing at the most simple joys. The statement from my friends post says to “be thankful” you don’t have to worry about the world for your typical child and to not “be sorry” for my journey. I completely agree with this. I, however, am not sorry for the journey Hudson is taking me on. I wake up “thankful” that he is here and that he is mine. And even if this is not a path you are on, you can still help with needed change. You can still educate yourself. Disabilities are not uncommon. It is said that 1 in 4-5 persons has a disability of some kind in the US. In Mississippi, it actually is higher. 1 in 3. So we all could benefit from learning how to make our neighbors be better included, or how to help make their lives better, not harder. People who are born with a disability or if it occurs by an accident are still human. 

   As you can see, my wheels are always turning and I am very aware of the needed changes. Ones that I can be okay dying and leaving Hudson here without me. Thats a tough one, but I know my work isn’t only done by myself, but by several amazing Self-Advocates, Mom-vocates,  Dad-vocates and more wonderful people. Many of these amazing people, I talk to on a weekly basis. We encourage one another, we inspire each other, we are stronger together. I don’t know how much time I have here, but I will make the most of it… Being EXTRA while I can.