How my son with Down syndrome has changed my life.
We recently had the opportunity to interview our guest blogger, Alisha, about her experience as a mother of a child with Down syndrome. Read on to find out about her amazing journey.
On October 27th, 2016, Alisha found out her son Mason was born with Down syndrome.
What went through your mind?
A lot of things crossed my mind while I was pregnant but having a child born with a disability was not one of them. It made me put a lot of things into perspective and quickly. I was devastated initially. I had an older son who was perfect, and at 23 & 24 years old, my fiancée and I were really confused as to how this had happened. We had tons of ultrasounds done when I was pregnant, even a 3D one and no one ever saw anything. They always talked about how great the baby looked.
Our devastation didn’t last long. We knew that he was our son; we loved him and were prepared to support him no matter what. Things were definitely scary at first. I was always so anxious, always thinking of what Mason’s future would be like. Because that’s pretty much how it goes with Down syndrome, you don’t really know much until they start to grow and develop. So I’ve learned just to live in the moment.
What’s the one thing you would you tell other parents who find out they’re having a child with Ds?
It’s going to be okay. It doesn’t seem like it at first; you have so many questions, and there will be so many people contacting you. Just make sure you write everything down and take notes at the doctor’s appointments. There will be lots of them, so I suggest you get some sort of file folder to organize all of the paperwork.
What has been the biggest challenge?
The biggest challenge has been figuring out all the different processes we have to go through to receive the resources available to Mason. Since he has Down syndrome, he is automatically eligible for SSI benefits but it takes three to five months to get approved. We have to submit so much information!
Having his medical records transferred from one doctor to another has also been a pain. I am constantly making phone calls to confirm everyone has what they need. Nonetheless, it has made me a more organized person. I’ve started using my planner more and I also have a folder for Mason’s and the rest of my little family’s important documents. I get to lug both of those around with me to each and every one of his doctor’s appointments.
What has been the most rewarding?
The whole experience has been rewarding to me. I’ve learned so much, and it’s encouraged me to make some changes health wise.
Mason has blessed my life in ways he’ll never understand. I wouldn’t have started my business had it not been for him, and my desire to be with him for every step of his journey. Pursuing my Virtual Assistant business has opened so many doors for me and changed my life in so many ways. I wake up everyday more grateful.
What is your biggest fear for your son?
My biggest fear is that Mason will be labeled by society. There are so many people that say and do things to people who are defenseless. Mason didn’t ask to be different, but honestly, he isn’t that much different than you and me. He’s only 5 months old but he’s so smart already, and he’s very aware of the things going on around him. Nonetheless, Mason and everyone else with a disability deserves the same respect as everyone else.
Do you think the way society sees people with disabilities has changed since we were kids? How?
Yes. I definitely think there is more education about all the different disabilities. I also think there’s also a lot more being done in society to make these people feel good and welcomed. My older son, Christian, goes to an inclusion school here in Atlanta. He’s in the 2nd grade and he has a little boy with Down syndrome in his class. I love that because it shows Christian that his brother won’t be any different than the rest of us.
What will you do to make sure he has all the opportunities he deserves?
Since the moment I found out Mason had Down syndrome, I said that I would do whatever I could to make sure he would be the best he could be in life. I quit my job to stay home with him and to make sure that he gets to all of his appointments. I plan to get involved with the Down Syndrome Association of Atlanta, make some connections, and find more resources that could benefit Mason.
Mason is doing awesome. He’s gotten nothing but great reports from all of the doctors we’ve visited. We recently went to the Down Syndrome Clinic at Emory here in Atlanta and we met with some genetic counselors. Dr. Talboy (who was awesome!) presented us with the chance to participate in a research study with Colorado State, and he’s starting physical therapy this week!
I will forever be grateful for my son with Down syndrome; he’s changed my life forever.
Alisha Wilson is Owner of M&C Virtual Assistants