Since I’ve become the mother to two children with Down syndrome, I’m continually shocked at some of the things people ask or say to me about my children. And, I’m not alone in this; other parents of kids with special needs have expressed similar reactions to mine.
Sometime people mean well but say something insensitive, sometimes they don’t think before they speak, and sometimes, I’m sorry to say, they are just downright mean and insensitive. For all of the above, here is my list of 10 things you should never say to parents of a child with special needs.
1. To the parents of a child with Down syndrome: That the word “Mongoloid” is an acceptable term for my child’s condition.
The term Mongoloid was used by doctors in the past, because the physical features of children with Down syndrome resembled those of the Mongol people. Since they discovered the origin of this genetic condition, the medical term is Down syndrome or trisomy 21. Since then, Mongoloid has become a derogatory term. I know it doesn’t reflect my children with Down syndrome; it reflects the ignorance and antipathy of people who use it.
2. To the parents of a child with autism: That your child seems fine, and the problem is that you’re not disciplining or raising him correctly.
One of the biggest challenges that families of children with autism face is the judgment of society. Please be empathetic. Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. It’s not that a child with autism is a brat or unruly. He has a diagnosed medical condition that affects his behavior.
3. To the parents of any child with special needs: That the word “retarded” isn’t intended to offend; it’s just the word you’re used to using.
Much like the word Mongoloid, the “r-word” has fallen out of use, and for good reason. Every time you call people with special needs retarded, you’re demeaning their abilities, as well as when you use it for yourself or for others to mean they did a mistake. Please think of all the effort that people with disabilities put to complete things that may look like simple tasks for you.
R-word—Spread the word to end the word, is a great place to look for more information on how we can eliminate the r-word from our vocabularies and educate our communities.
4. That I have a Down’s child, an autistic child or a CP kid.
There are infants, toddlers, children, youth and adults WITH Down syndrome, autism, cerebral palsy, and other disorders. They are people first—their conditions do not define them, nor do they precede them. The person always comes first, and every child has a name, and qualities that make him or her unique and irreplaceable. So don’t refer to my kid as a syndrome.
5. That my child suffers from.. “Disability is not the same as sicknesses”
Some people with disabilities are likely to have medical complications. Some of them are healthier than you and me.
Disability is not contagious, is just a different and singular way for living and loving. People with disabilities live full lives with the support of their families and communities.
6. Children with disabilities can’t communicate if they can’t talk.
Children with disabilities have different ways of communication. Some children with autism may slap their hands to communicate; some children with intellectual disabilities may use electronic devices to express themselves. We don´t expect you to understand them, but we do expect you to respect their individuality without teasing them or mimicking them.
7. Is your child ever going to walk or to talk.. or be independent?
The way you ask or approach to me and my child is important.
I’m willing to help you understand my child’s abilities. I get excited to share all the things he can do instead of pointing the ones he has not achieved yet.
As parents our best input is to educate our communities with our experience and example, but as everybody else we enjoy manners and privacy.
8. Your child with disabilities is not good enough to be included.
Don’t tell me or any other parent of a child with special needs that my son’s IQ doesn´t qualify him to live free from prejudice, and that a mainstream classroom is only for those who are able to pass the FCAT. Nobody is doing our children a favor by providing them inclusive education. It is their right. Tell me that you don’t know how to do it, but don’t tell me that he is not able. Give him the opportunity to set his own limits. I’m sure you can learn from him.
As typical children provide natural opportunities of development for our children with special needs, our children provide them awesome lessons of acceptance, determination and inspiration.
9. Condolences such as, “I’m so sorry,” “He doesn’t look like he has Down syndrome” or “Kids with autism are geniuses.”
I’m not sorry; I’m not apologizing or making excuses for my kids, and I’m not expecting them to be anyone other than who they are. So you do the same. Being different is natural.
10. Don’t ask me if I’d have my children if I had it to do all over again.
My children are the most important people in my life. I love them with all my heart. They’re the reason I wake up every day, and through the years I have learned that God doesn’t make mistakes.
So, if you or someone you know is offended by my list and my admonishments, I’ll say the same thing that some insensitive people have said to me: “Please don’t take it personally!”
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