16 Things Doctors Cannot Tell You About Raising a Child With a Disability

When my daughter with Down syndrome was only a few weeks old, my husband and I met with a genetics counselor. Thankfully, by the time we met with this particular professional, I had already read the book, “Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives.” If I had not read the book, I believe I would have walked away of that meaning feeling as if there was no hope for my child. The counselor gave us a list of things my child would never do and suggested we had no expectations for her.

At the time of that meeting, I was a new mom and had not developed advocacy skills, but I did speak up and challenge the geneticist, telling him someday I would send him an invitation to my daughter’s graduation party or wedding. He laughed and said that would never happen. (As a side note, he was fired due to several patient complaints.)

I know our experiences are not isolated. So often doctors and other professionals offer lists of what our kids with disabilities can or cannot do. They present a future based solely on a diagnosis and not on the individual. Most important, their advice is limited to only the medical model, and as we know, our kids are much more than their diagnosis.

While a doctor can share some generalizations based on a new diagnosis, that doctor cannot tell us the celebration and pride we will feel when that same child takes a step in a gait trainer. There are certain things a medical professional can never tell us.

We reached out to the Mighty parents in our community and asked them, “What is one thing a medical professional could have never told you about raising your child with a disability?”

These were their responses:

1. “One day you won’t even think about their diagnosis upon waking up. What was once first and foremost on your mind becomes the last thing. You will adjust and what once seemed so ‘abnormal’ is perfectly ‘normal.’ Like anything else in life or with any other child that you love, you get up and meet the need rather than try to fix it.” — Debbie T.

2. “Nobody told me I would be blessed beyond measure, that I would experience the purest of love, that my child would have the potential to do amazing things (things doctors told me he would never possibly achieve), that I would become somewhat of an activist and champion a cause.” — Sharon R.

3. “There has not been a single medical professional to this day who could’ve ever predicted how God would shine his light on our lives. No doctor could have prepared me for all the tears of both fear and joy that this journey has brought us either. His smiles, hugs, and laughter make even the grumpiest of people break out in a smile when we are out anywhere. No one could have told me that this little boy who has been through so much in his short life would not let any of it harden his joyous lovable spirit, and instead he still hugs and high fives even his surgeons. My son has made me a better person and helped me grow and open up my mind to grow more as a person myself. His light beams bright, and he makes this world a brighter and happier place with the purest of love he shares with the world freely just by being who he is.” — Holly S.

4. “You will get stronger.” — Steph R.

5. “I would have loved to hear that there is no such thing as ‘normal’ and to never compare against the vision of ‘normal’ that we have. Every child has something, whether it’s physical, environmental, emotional, intellectual… whatever, they can find a way to overcome. Oh, and to learn to fight like hell… some days are tough, and not everyone will see the world like we do now.” — Sheila P.

6. “By having my daughter I would learn how to love without expectations or strings attached and that is the purest love of them all. Learning that love has made me a better mother to all of my children and a better wife, sister, daughter and friend.” — Ashley P.

7. “You know your child best! You will have to educate many over your child’s life, especially educators to realize your child’s full potential. [Our kids] are more alike than different from anyone else!” — Monica G.

8. “It’s like being in a secret society. You are privy to such love and complete trust from your little one. You will be able to look into her eyes and know what she needs. And you will meet some of the best people in the world who you would never have met if you weren’t a part of this society. There’s a lot of beauty in being the parent of a kiddo with extra needs. Don’t get me wrong… there are a lot of hard days, but the good days far surpass.” — Julie WK.

9. “[No one told me] how her love and personality would be the glue of our family.” — Christine V.

10. “That I would become a better person. That my heart would be so full of love and admiration for my incredible child. That she would teach me every day about what is really important in life and to let go of the small things that don’t matter. That obtaining services and the right care for her would often be a battle we would learn how to fight. That our world would connect with other incredible families going the extra mile for their children every single day. That I would develop the confidence to become a strong advocate for my child and for others in our community. That her disability would not define her life or ours.” — Maylia B.

11. “It’s not the end of anything; just the beginning of something new and different. There is always hope and things change every day. Where we were one year ago is completely different from today with my son.” — Melissa O.

12. “That I would meet so many wonderful people as a result. And that I would love her with an intensity I never knew was possible.” — Jenni W.

13. “I now see and experience the world through a whole new set of eyes. The world is a very different place for a person with a disability and we are navigating that together, the good and the bad.” — Samantha S.

14. “I’ve become a stronger person because of my child’s disability. And also it’s not the diagnosis that makes them disabled, it’s the world we live in that makes them disabled. Because even though my child may be limited on what he can do, there’s still so much that he is able to do but society doesn’t feel that he should do those things because he’s blind. The other thing I wish they would have told me is that the diagnosis doesn’t change the fact that my child is first and foremost just a child, who happens to have a disability.” — Tonya G.

15. “Every inch stone gets a happy dance and a great big ‘yahoo!’ Never give up and always live and love all the moments, even the tough ones.” — Jenah C.

16. “The intense love for your child will make you move mountains.” — Lauren W.

What is one thing a medical professional could have never told you about raising your child with a disability? Let us know in the comments.