As a parent of a special needs young adult, I feel it is my duty and honor, to pass on some tips of the trade. It is not an easy task as you made have read in my blog yesterday. It is rewarding, exhausting, crazy, frustrating, but most of all exhilarating when you see the results of your hard and very tedious work.
1. Don’t expect your friends with typical kids to understand your passion.
Yes, they will support you, but I don’t vomit my frustration to them, instead I have a support group of friends who are or have walked the same path. That is not to say that my friends with typical kids aren’t supportive, it just may be harder for them to understand.
2. Take the Road Less Traveled.
It might be easy to follow the crowd, but each child is unique. Don’t be afraid to think outside of the box and create a new way for your child to shine. The doors may continue to close, but in my experience, it takes persistence. Don’t wait for another door to open, continue knocking. I have made many doors open by my tenacity. Some call it stalking, I call it persistence.
3. Not everyone is going to love you.
I got over this one quickly because I really don’t care. My primary purpose is seeing that my child be treated fairly, get the opportunities that he deserves, and live a happy life. I have made many grown adults wince and even cry when they are blatantly overlooking my son’s rights. Our kids are human beings and should be treated as such.
4. Sometimes your family might not understand you mission.
While our family is supportive, there were times when I was questioned about the decisions made in regards to Bailey. Know that families love and care about you, but it is important to follow your gut on what is best for YOUR child. If they haven’t walked in your shoes, then they don’t have experience to share.
5. Your role expands past being a parent.
You are also an educator. It is your job to teach others about your child’s challenges. People are ignorant when it comes to special needs, so be patient. I can’t begin to tell you the number of people who are grateful for my time in telling them about Bailey’s diagnosis of Down syndrome.
6. Sometimes you are the pioneer
This goes back to following the road less traveled. There are many times that I have paved a trail because I believe there was something more than what was being offered. I have found that even my special needs parents and supportive organizations abandoned me when I forged ahead. That’s okay. The reality is sometimes being the sole bulldozer has its perks. While some of my endeavors might not have worked out, they opened the doors for other opportunities.
7. Your child’s diagnosis doesn’t define them
I gave birth to a son, not Down Syndrome. Bailey is just like any other typical person. He has aspirations. He gets mad and annoyed. Just because he has special needs doesn’t mean that his feelings are mute. When I look at Bailey I see him, not his diagnosis. While the extra chromosome has affected his life, he is still a vital part of the community. He votes and soon will be starting a job in a community who already knows his spirit.
My mantra is “Easy does it”. The strides that have been made in just the last twenty years have been amazing, but we still have a long way to go. Move forward and don’t allow fear to stop you. I have found that fear actually motivates me to expect more, to seek a better way, and to improve our community outlook for these amazing individuals.
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