Five Pieces of Advice for Parents of a Child with a Disability

“It is OK to ask for help when the load gets too heavy.”

That’s what Ana Sanchez said she would tell her younger self about raising a child with an intellectual disability. 

Ana moved through guilt, self-blame, feeling alone in the struggle, and many other emotions as she raised her daughter, Vanessa, now 41, on the way to acceptance and pride. She’s learned a lot and has a few pearls of wisdom she’s willing to share.

Today, Vanessa is thriving at Mosaic. But Ana remembers what it felt like to learn of Vanessa’s disability. She didn’t even know how to respond or what to ask.

“I remember feeling lost,” she said. “I was asking myself, why? How did this happen? What am I going to do?”

Her experience through the years has taught her the importance of not trying to do it all on her own. 

Here’s a short list of lessons Ana learned that may help others on their journey. 

1. Get help: Be willing to admit you cannot do it on your own.

“I have to rely on other people, and it’s OK,” Ana said. “As a parent, you try not to do that because you feel that it is your job to be able to sort everything out and fix everything. But you can’t. You’ve got to ask for help, because it gets lonely being a parent of a child with a disability.” 

Ana said she especially appreciates the help she received from Mosaic. Thanks to both Vanessa’s persistence in pursuing what she wants and Mosaic’s support, Ana said she no longer has to worry about Vanessa’s future. 

“As a parent, the concerns about your children never go away,” she said, “however, I am at peace knowing that if I am gone, Mosaic knows what Vanessa needs to continue doing to be a successful member of society. They will step in to help her and guide her. She will never be alone.”

2. Accept your child: Change yourself, not your child.

“I know that her disability is a part of her,” Ana said. “We just need to be able to work with the disability and not against it. Take the time to learn how to deal with the disability and help your child.”

Part of that is letting your child be who they are and learn as they can, she said. That may be scary, Ana said, but it’s OK to make mistakes.

“That’s part of being a human being,” she said. “If you don’t move forward, that child gets stuck, you get stuck, and everybody else gets stuck.”

3. Treat yourself with care: Remember, you’re only human.

You make mistakes, and things don’t always go as you think they should. Model accepting your child by accepting yourself and knowing that you’re human, too. 

“I would give myself a chance,” she said. “I would tell myself that it is OK to be scared and angry because you don’t understand. God is not punishing you. ” 

Because Ana didn’t know a lot about disabilities, she spent a long time—now she sees it as wasted time—blaming herself and wondering what she did to cause the disability.

4. Focus on your “why”: You’re more resilient than you know.

The unanswered questions and the uncertainty of the future are uncomfortable. But it doesn’t have to be.

“As a mom, you have a purpose,” Ana said. “But as a mom with a child who has a disability, your purpose just got 100 times bigger because you’re working, not for you, but for your child. I now think it made me stronger. It made me resilient.”

5. Be proud: Rejoice in who your child is.

Ana is proud of Vanessa and all she has accomplished. She remembers her little girl going from kindergarten to first grade. 

“She tried so hard to fit in and be like the other kids,” Ana said. “She would struggle, but she did not give up.”

Today, Vanessa lives on her own, has a job, takes care of herself and her pet dog, and keeps active to stay healthy. 

“She’s doing very well,” Ana said. “She is becoming more and more independent.”

She still lives close to Ana, but is happy to have her own place. 

“She tells me that she loves me, but she likes her independence,” Ana said.

Ana found support to help Vanessa thrive at Mosaic. If her story resonated with you, learn about Mosaic services and how we can help you and your loved one with a disability.