Did you know that one in five, or more than 4.5 million children in the U.S., have special health care needs? This is a diverse group, encompassing learning differences, mental, behavioral and physical special health needs. Children with disabilities or special needs are valuable members of their families, schools and communities and may also experience more challenges requiring physical, academic and emotional help. This month, I invited a wonderful parent to talk about what she’d like other parents to know about connecting with children like her daughter with special needs.
If your child has run up and blurted out a blunt question to someone with a disability, or you felt unsure yourself how to include a child with different needs at an event, or you are just curious about the experiences of children with special needs, please read on:
Meet Sophia Grace
Stacey Sunde’s 16-year-old daughter, Sophia Grace, adores sparkles, has a sweet tooth and is full of love (it’s her superpower, says Stacey). Sophia Grace also has a number of other differences: she uses a wheelchair, she doesn’t talk and she uses a ventilator. Stacey and Sophia share a deep, profound joy in their lives and also have to navigate the effects of a rare neurological disorder. All of these things are true simultaneously and they make up the whole of a lovely child and family.
Stacey has offered to share her own experiences and tips as the parent of a child with special needs to help other parents navigate connections with children who are different, and to tackle some uncomfortable questions.
Question: What would you like people to know about children with special needs?
Answer: First and foremost – treat our kids like kids! Every child wants to have friends, to play and be included. Every child is different in how they do that. Every kid has their own special needs – ours are often more visible.
Q: Is it OK to approach you and ask questions?
A: In most cases, yes. Questions and curiosity are common and normal. My ABCs of connecting with children who have special needs are: Approach us, be kind and let curiosity lead.
The ABCs of connecting:
Approach: It’s OK to approach us, ask if questions are OK and just say hello. Please do! If someone doesn’t know what to say, I will often find a connection, like “You have pink shoes. Sophia loves pink too.” You can do the same.
You can also offer your child questions that normalize differences, “Do you notice anything different about Sophia that you’re curious about? Do you want to ask about her wheelchair?” It’s helpful to not ask only questions about disabilities, medical challenges and enabling devices, as it “medicalizes” the child. But asking some of those questions is OK, those things are clearly part of our life experience. When in doubt, find similarities to talk about.
Be kind: Seeing the child as a human first is a sign of respect for the person with a disability. If the questions you are asking have kindness behind them, it is going to be OK. You can offer your child kind language like, “How did you get those cool sparkly wheels for your wheelchair and why do you use it?” Especially older kids may want to know if Sophia feels ok or does it hurt, and again, that curiosity is from a kind intention, and we receive it that way.
Curiosity: When kids are allowed to be together, natural curiosity takes care of itself. When Sophia was a preschooler, kids would walk up to her and figure out how to play together with no guidance at all. A lot of preschoolers were as interested in the fact they shared a love of lollipops as they were in why Sophia uses a wheelchair.
As parents, we can be worried that a child’s curiosity or questions reflect poorly on you, or you don’t want someone to be angry at your child for inappropriate questions, so you might pull your child away when they approach someone with special needs. But pulling away can send a “caution” message and that they shouldn’t be curious or connect with this child.
Q: Should we invite you to parties and activities, even if your child can’t fully participate?
A: Parents sometimes hesitate to offer invitations because they can’t envision how to include the child with special needs or are worried that we will feel left out of an activity. Invite us anyway, trust our ability to problem solve and know the invitation is meaningful. You don’t have to be the one to find the solution that lets my child participate. Yes, it is good to recognize limitations and let us know if there are accommodations that can be made, but parents of kids with special needs usually have the knowledge and the resources to make it happen.
Often enough, kids figure out how to include everyone themselves. Sophia Grace was invited to a roller-skating party and by halfway through the event, every kid was asking to push her around the rink!
Q: How can I talk to my kids about special needs?
A: If your child has questions about a child, or adult, with disabilities, talk to them about it. You don’t have to know the person’s specifics or be able to explain every last detail of adaptive equipment like hearing aids to be able to help your child understand that some people hear differently. One of my own go-to answers for questions about Sophia’s movement is terrifically not complex: “It’s hard for her brain to make her muscles work so she uses a wheelchair to get around.” Don’t let it be a mystery, just model a positive, inclusive attitude and answer how you can.
You can role play with your child on how to make friendships with kids who are different from them. For example, practice asking another child, “I see you use a wheelchair. Does it go fast? Did you get to pick the color?”
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Inclusion is an act, not a thought and we can connect directly with people who are different and lead with kindness and curiosity. We can also protect funding and services for children with special needs. The Individuals with Disabilities Education Act, first passed in 1975, guarantees the right for children to receive appropriate public educational services from age 3-21 years. Service provides needed early intervention, resources, family support and access to education which ultimately allows children and families to thrive.
More from Dr. Block and Kaiser Permanente in Seattle’s Child:
- What to know about the HPV vaccine
- My child stutters, lisps or skips words: Should I worry?
- Is your child lonely? How to help
- Temper tantrums: survival guide for parents
- Parent burnout: It’s not just you. Tips for coping
