33 Truths Moms of Kids With Disabilities Want You to Know
I parent two kids with disabilities, and I’m often invited to speak to groups about “what it is like.” I usually begin by asking the audience to give me words or phrases they think describe my life, and I write them down for the audience to see. Usually these words include: hard, exhausting, messy, tiring, never-ending, etc. I then ask the audience to raise their hands if they believe those words describe parenting, period. All hands usually go up.
While those words have described my life at times — because parenting is one tough job — it appears many people believe parenting kids with disabilities means our lives are primarily hard and difficult and messy and so on. Again, while we do have those moments, that is not what our lives are all about.
Some people struggle to understand our life is full of beauty and joy and love. Like all parents, we also experience those moments of pure love, joy, happiness and pride over our children’s accomplishments. We love our kids fiercely. And I would say it is those moments that primarily determine our lives.
We reached out to moms in our community and asked: “What is one thing you wish people knew about what it is like to be the mom of a child with a disability?”
These were their responses:
1. “It’s not a bind or a burden to be born; it’s a joy. We are proud of our children just like typical needs parents are. We rejoice at their achievements, we laugh, we celebrate. Our life is different but it’s also happy and fulfilling. Stop pitying us for our gorgeous children. That is just insulting.” — Ashley M.
2. “My child is a blessing. I really wish for others to teach their children to love all and to accept the differences in one another. I personally don’t know what it’s like to live life other then being Mommy.” — Shamiria V.
3. “Yes my days are filled with doctors’ appointments and therapies, but the love and growth as a family that we get to experience is beyond anything I could have ever asked for. There are always lows in life, but the highs of life are extra high!” — Melissa O.
4. “My son shows me every day the wonderful way he sees the world (he is on the spectrum), to cherish every little step in our journey. Not every day is great but I would never change a thing. I’m thankful God chose me as his mom.” — Anaid G.
5. “Typical milestones are overrated. My daughter is behind her peers academically, but she is kind and empathetic. I’m completely OK with that!” — Becki U.
6. “Having a child with a disability is not a burden, it is a blessing. Every day is a learning experience and I am proud of my children and what they have taught me over the years.” — Eileen A.
7. “My daughter, even though she’s nonverbal, still shows us every day that she is excited and loves us.” — Jennah C.
8. “My son has educated me in more ways than I ever could have imagined and showed me the meaning of never giving up.” — Angela M.
9. “It’s rewarding. Our challenges are great so our victories are all the more so. Real love is forever and unconditional.” — Raven E.
10. “We embrace out kids’ differences and celebrate them.” — Dagmar C.
11. “My son makes our family whole and beautiful.” — Lenora P.
12. “We aren’t different than any other type of mom!” – KayLeigh K.
13. “I was a ‘special needs’ mom for 14 years, and I was blessed, lucky, and honored to have my daughter just the way she was. Down syndrome, heart surgeries, medical setbacks, developmental delays, speech issues, autism and behavioral challenges… Oh the bad days were really bad. But they are overshadowed by so much good. My daughter’s strong spirit, her silliness, the way she spread joy wherever she went. And the way our lives and hearts were intertwined with love. I was her safe place, her interpreter, provider of kisses and lullabies. And she was my purpose; caring for her was my calling in life. She was my sunshine and my teacher. And when she left this earth, she took a big piece of my heart with her. I am a better person for having loved her and been loved by her, and the world is a better place because she was here – if only for a short while.” — Cindy J.
14. “My happiness doesn’t come with conditions. I don’t wish my life was any different. I am really, honestly, truly happy and proud to be the parent of the daughter I have. I couldn’t imagine my life any other way. And while I do often wish that society would hurry up and adapt and change to be more inclusive and accessible to fit her, I don’t ever wish that she would change to fit an ableist society.” — Teresa J.
15. “My child’s life is not a tragedy. Our lives are just as full, and just as worth living as anyone else’s’. Different means different, not less than.” — Elisabeth M.
16. “Having [my son] in our life brings joy and happiness through the unconditional love of his beautiful soul.” — Marietta T.
17. “My daughter with Angelman syndrome is so amazing. She has taught me so much! She never stops trying. She is pure love and forgiveness. She is so inspiring to me and everyone she meets. It’s humbling how lucky I am to be her mom!” — Robin L.
18. “I feel immensely privileged to be a mom [of a child with a disability]. The lessons I’ve learned getting to parent my daughter are often life-altering. Her life grounds me in a way that nothing else can.” — Heather T.
19. “I knew nothing of this gift before I was given it. I knew no one with a disability — with Down syndrome, autism, had no inkling how to do this and honestly, I really didn’t want to. Oh, but now! I am fierce for him. Because life has a way of teaching us how to become who we need to be for our kids as we teach those along the way that our kids are exquisite and amazing and just somehow, our kids end up teaching us all about what is really important in this life.” — Vicki N.
20. “Having a child with [a disability] means I get to have lots of fun! For example, I get to stop and take a dance break in the parking lot on the way into Target. Your inner child gets to tag along with your kids! This and saying ‘hi’ to literally everyone we see, may be thought of as an inconvenience to some, but I see it as his way of showing the world some love, and letting them know: you’re known, you matter.” — Courtney B.
21. “I feel very honored to parent my boys with disabilities. It allows me to see the entire world through a different lens. One that I’m always grateful for.” — Cassie B.
22. “What a joy my kiddo is. He’s so much more than the therapy, doctor visits and endless worry. He’s wonderful and sweet and brings joy to everyone he meets.” — Charity S.
23. “My son has taught me so much more than I’ll ever teach him! Patience, grace, compassion, empathy, to name just a few. Although he doesn’t speak, he has charisma that few ‘normal’ people have. Being in his presence is like being on another plane of consciousness (difficult to understand, and so hard to explain, as it sounds so foreign to say it that way) and closer to God. His pure spirit is felt in our entire home. I think that people don’t realize, with all of the difficulties of a disability; that pure and real joy go right alongside the tough parts.” — Susan J.
24. “It’s a place where you learn not to take things for granted and you find delight in the small stuff. It’s warm and gooey and sometimes filled with lumps, but it’s good. It’s a true place of unconditional love flowing between you and your child.” — Rhea C.
25. “I have three kids with disabilities (and one without). I love my life. It is my privilege to be their mom. I’m not different from any other mom, I’ve just picked up some more unique skill sets over the years.” — Maya BZ.
26. “Having a daughter with [a disability] has enriched our family. Watching the world through her eyes has broadened our perspective in so many areas of life. [She] finds pure joy in the simplest form. She reminds us to pause and soak in every detail of the present. She loves all-inclusively! I believe that’s one of the greatest things she continues to teach us. There are no limits in her mind. [She’s] constantly determined to try and keep on trying. That kind of drive , focus and positivity is contagious!” — Charlene K.
27. “Every single day my daughter reminds me to have joy no matter what. She makes no exceptions for her circumstances. She simply greats her life with a smile and a laugh. Every. Single. Day.” — Jennifer T.
28. “Having a child with a disability has taught me compassion, strength and the ability to keep going when I want to give up. Kids with a disability are some of the sweetest kids that anyone will ever meet.” — Thelma B.
29. “Her unique perspective on life is constantly teaching me to be a better, more loving, more compassionate person. Just like she is.” — Becki P.
30. “She’s the most authentic person I know and my greatest teacher.” — Jessica S.
31. “My daughter is perfect in every way. She has taught me to slow down and appreciate today, every day.” — Anna P.
32. “We never take anything for granted. Our son gives us more joy than you can imagine. He is a pure soul.” — Rossanne C.
33. “I have learned how to celebrate every success and never take anything for granted. Also, I’m not the judgmental, selfish and negative person I was before my son came into my life. He’s truly changed me into the best person I can be.” — Myhand J.
Do you parent kids with disabilities? What would you like people to know about the beauty of your life? Let us know in the comments.
Banner image courtesy of Alicia Llanas. Find her at AliciaLlanas.com.