I have an absolutely awesome kid who has worked hard to learn how to manage many of his special needs. Throughout his life, people have offhandedly commented something like “He seems perfectly normal,” which honestly diminishes how much he has struggled (as well as the rest of the family) and how hard he has worked to get where he is.
Today I’m welcoming Kathryn from Singing Through the Rain to talk about the myths about what a kid with special needs actually looks like for my series Voices of Special Needs.
Why My Child Doesn’t Look Like He Has Special Needs
1. Kids With Special Needs Don’t Necessarily Look Different
Just because a child may have special needs doesn’t mean he or she will look any different than you or I. A lot of children with special needs look just like any other average, typical child. This is called an invisible disability. There are many many adults and children who have invisible disabilities, our job is to be more aware of this and to be compassionate and inclusive.
2. What You Don’t Know or See
My children may not look like they have special needs, but there are plenty of things that many people don’t know or see. People don’t see the behavior problems, the sensory problems, the constipation problems, the hours it takes at each meal to get my son to eat, the times where he has a meltdown because we can’t understand what he’s saying, and so much more. There are plenty of things that people can’t see, but they are all a part of his special needs.
For my daughter, there are also many things that people can’t see just by looking at her. She has a feeding tube that might not always be visible and no one sees the hours of time spent at multiple specialist’s offices. I get told a lot that she looks great and that they don’t understand why she needs a feeding tube. What isn’t understood is that the reason she looks great is because of the feeding tube. That feeding tube probably saved her life and continues to do so every day.
3. What Happens at Home
People think my children “look” or seem normal because they see my child for a short time. In that short time they may be doing great. We’ve had family members come spend a day with us in the past and they tell us nothing seems wrong with our kids. The point is that they are only seeing on single day in their lives, not seeing the whole overall picture.My children may not look like they have special needs... Click To Tweet
My son has good days and bad days. Some days he does great, other days are very hard for him. Home is a safe place for him so the majority of the behavior and other problems he has happen at home. So just because you may see my child out and about for 10 or 20 minutes of that day and they look fine, doesn’t mean that they don’t have special needs.
I saved this point for last because this is the most important to me and my family. We’ve been told that my son is a perfect example of a child who got early intervention. My son has been in therapy since he was 12 months old, my daughter started therapy at that the early age of three months old. They both have worked extremely hard to get to where they are today and to what you see as “normal.”
You don’t see my kids “looking” like they have special needs because of the early interventions, because of our advocacy for them, and because of the hours and hours of hard work they did in therapy. I look back and remember where my son was three years ago, and I am amazed at how far he has come. I look at my daughter and watch her improvement in walking, eating ,and sensory awareness each and every week in therapy and I am amazed.
When you see my kids, please know that they “look” normal because instead of playing with friends they were in therapy. Because we advocated for them and spent hours dealing with doctors and insurance companies so they could be where they are today. Instead of going on playdates or hanging out with other moms I was working with our kids at home and taking them to therapy. Special needs parents sacrifice so much and my kids are an example of that.
My kids may “look” normal, but when I look back to see where they were, I am so grateful. I am so proud of my kids and so proud of how far they have come.
The next time you see a special needs child that doesn’t “look” like they have special needs, I hope you remember that the reason for that is because of how far they have come and because of all the hard work it has taken to get that point.
This post originally appeared on Singing Through the Rain. You can read more from Kathryn there.
For more great reading about special needs parenting, consider the following affiliate links: