By: Mika Hartman
Each year , National Down Syndrome Congress (NDSC) host a conference. If you are lucky, you don’t miss it; you can’t miss it, so much happens in a year of research and technology.
I attended my first one in 2022 in New Orleans and was immediately filled with hope, inspired by everyone there and left with many tools to better navigate this journey. The best part, the families you meet that become your family. In 2023, this is the year for me that this no longer was a conference, it became a family reunion.
This year I was blessed to travel with several ladies from Gulf Coast Down Syndrome Society (GCDSS) and, again, traveled on a scholarship provided by GCDSS. Already traveling with GCDSS family, this was a perfect start to our time in Phoenix, Arizona. While the temperatures were blazing outside, the coolest people on the planet were inside the event center. You can’t attend anything better, you can’t learn without the best teachers and you can’t see a better tomorrow without walking through the door… this door!
The family part is already present just by showing up; the conference part, for me, is in two parts that tell me it was a great conference. 1) I want to learn about a new technology or medical updates that help children like Hudson and 2) I want to hear what other states are doing/pushing new legislation that help families like mine.
As per the norm, this conference delivered.
I love sitting as close to the front of a classroom as possible. In 4th grade, it was because I couldn’t see the board from a far distance and needed glasses; today, it’s because I want to absorb all I can. This class was a dual diagnosis class: Down syndrome and autism; three ladies made up the panel of speakers, the same three I have been going to their classes since my first conference. As Teresa Unnerstall (author of A New Course: A Mother's Journey Navigating Down Syndrome and Autism) gave her presentation, she shared a great tool to have: a one-pager, like kids often do in school, with information that would help caregivers, doctors, therapists and anyone really, to help understand your child best. By sharing likes, dislikes, ideas to help with communication, the intent is to make visits better for all. One of her “struggles” about her son is blood draws; this brought up all the same trauma Hudson feels at the dreaded blood draw. Hudson breathes heavy and more audible just pulling in the parking lot. The smells and all the scrubs make him anxious. The room, the chair, the latex band… all of it upsets my sweet boy equally as bad as the needle itself. So I understood this so much.
After the presentation was finished, the call for questions was offered. The microphone was really close to me up at the front and a gentleman wearing joggers walked up. It was Dr. Espinoza, a huge champion in the medical field and research for our families. He stated that it wasn’t a question he wanted to ask, but wanted to offer that new technology may be of some relief over Nick’s resistance to blood draws… wait…. what?!
Dr. Espinoza shared with Teresa and the attendees, that a company called Tasso, Inc. had created remote blood collection patient-centric technology. All I could do was cry. I just looked at my friend on the panel, Dr. Lina Patel, and cried. I am crying now. What a relief to know that the future for Hudson holds technology that he could have his blood drawn at home by a simple patch and button to collect the blood. All while watching Woody with no clinic smells, no scrubs, no panicking and no bruising from the fight of it all! What a win! This is why you donate to research. This is what brings dignity and restores trust in needed medical services. Check them out. I don’t know them, but I love the work they are doing. It’s like Elizabeth Holmes’ promise, but with truth and integrity.
As for the legislative opportunities for Mississippi, I attended the NDSC Advocacy Bootcamp with Jawanda Mast and several others, even Mississippi’s own Jessie Smart. Jessie represented us so amazingly and eloquently. Then Mr. Jon Meyers, with Arizona Developmental Disabilities Planning Council, was called to talk about new legislation that just passed after four years in Arizona: Supported Decision Making. It doesn’t get more common sense than this. This replaces the need for Power of Attorney or Guardianship and gives the individual with the disability say in what they want, how they see their future, who they want helping with decisions. You know it’s not talked a lot about, but sometimes those having the power can be selfish or the ones causing harm. This ensures that the agreements includes the voice of the one the decisions are for. It actually saves the states money with no court costs and no judges involved.
I won’t share names here, but I am dear friends with a family that this change would have made a huge difference in their adult child’s life. It was a marriage, it was a very publicized event and when the cameras stopped rolling, the brides mom forced the marriage to be annulled against her daughters wishes; there was nothing anyone could do to stop it. I am a firm believer in God and His plans, the groom had to heal over this but has risen much stronger. I am unsure of how the bride is today, but I know her mom robbed her of a life she wanted. Selfishness is ugly. We should be supporting the most independent life that is possible; not what works best for us, but what’s best for the person.
The one with the power may just be the abuser. I get that not all people with disabilities may benefit from this and might not be able to make some decisions with a practical foundation, but those who can, they deserve this. When a person with Down syndrome had a life expectancy of 25, this made sense. Not much adulthood to need choices for a lifetime; however, now our buddies are living full adult lives; wanting to get educations beyond primary schooling, wanting to be married, wanting to live independently and living to age 70+. That's 45 years of being an adult and much of a life to have input on how they want to live, right? It’s called “supported”. It is a process that allows people to make decisions about their lives with the help of trusted people. SDM can be used by anyone in any are of life, but it’s often used by people with disabilities. SDM can help with gathering information, asking questions, evaluating options, and communicating decisions. It can help people develop and pursue their own goals, and exercise control over things that are important to them. I told you, good common sense! I have no idea why something this good took 4 years to pass in Arizona, but I believe it is needed here in Mississippi.
I didn’t even hear the whole presentation and I was already texting my legislative friends from both sides of the aisles. Hudson and his buddies should all have input, to the best of each individuals ability, to live the life they want to the best of their abilities. This isn’t a far fetched dream, this is a right. And it will save our state money. So, this is me saying that I plan to fight for this.
So this conference checked this mom’s two hot buttons of technology and legislation: easier blood draws from home with Tasso, Inc. and Supported Decision Making (SDM). I learned so much more, laughed the best belly laughs, one special buddy bought me a drink, I had lunch with one of my very favorite momma’s, I met up with friends from Alabama, I connected with many new faces and absolutely loved seeing the familiar faces that I am blessed to call my EXTRA family.
