When your child is diagnosed with a disability, it is life changing. You may already have known something wasn’t quite right before the diagnosis, but receiving that official “label” is life changing. What we imagined our life to be and what our reality is is quite different. I have spoken to many parents who have received their child’s diagnosis and although they suspected it, the news was devastating. Before the “label” we could live in a fantasy world that allowed us to believe that maybe he/she just simply speech delayed. We convince ourselves that certain behaviors are really just the terrible twos. When we observe regression, we tell ourselves they weren’t really doing that skill 100% of the time anyway. The diagnosis makes it real.
Over the years, I have heard many well-meaning comments from typical parents: “Oh, you should try using time-out.” Um, doesn’t work. “I saw online that there is a holistic doctor that does chelation that cures autism.” Tried it. She’s still autistic. “My brother’s co-worker’s cousin has a son with autism. You should totally talk to them!” Um, no thanks.
I don’t think people say things to be hurtful; they simply just don’t know. Unless you have a child with a disability, it is very difficult to understand. Here are 10 things you should know about parenting a child of special needs.
10 Things Typical Parents should know about Special Needs Parents
- We do not want your pity. When your friend shares their experience of parenting their child with special needs they are not looking for you to feel sorry for them. They are also not looking for you to solve their problem. They are looking for a friend. Someone who can say, “Wow that sounds like a rough day! Anything I can do to help?” This is no different than when you share that your son broke his arm. Do you expect your friend to feel sorry for you?
- We get more advice than you can possibly imagine; we likely do not need your advice. Many well meaning friends want to share how their neighbor’s nephew’s neighbor has the same disability and they saw Dr. X and he is now cured. Most parents of special needs kids are very well informed about their child’s disability. They stay up all hours of the night researching new therapies and studies. They are likely well aware of any therapy that claims to “cure” their child’s issues.
- We worry all the time. The difference biggest difference between parenting a typical child vs. parenting a special needs child is that you never stop parenting your special needs child. Our kids will likely need some degree parental support throughout their lifetime. Our biggest worry is, “Who will care for my child after I am gone?” This is a constant worry and does not go away. They also worry about inclusion, education, socialization, etc. The worry list is LONG.
- We celebrate our child’s accomplishments no matter how big or small they may be. Many of have been so scared to believe in our child’s potential and when our children do reach huge milestones, we want to celebrate BIG. We might throw amazing birthday parties for our medically fragile kids just to celebrate the fact that there are on this earth for another year.
- We are not Superman or Superwoman. PLEASE do not say we are amazing and you could never do what we do. I assure you, if your child was diagnosed with a disability, you would move heaven and earth to help your child reach their potential. We are like any other parent; our kids are the ones that are amazing superheroes!
- We are more educated about our child’s disability or issues than any doctor, teacher or therapist. We spend hours on the internet researching. We join support groups to learn from other parents of special needs kids.
- We sometimes find it difficult to sympathize with other parent’s concerns about their typical healthy children. I have heard many people comment how most of my friends are parents of special needs kids. It is not because we all got together and decided to form a clique; it is because we get it.
- We over plan for every scenario. We create a plan A, B & C with the option to throw in the towel and go home at any time. This is especially challenging for parents of children with mobility issues. They have to make sure every area of every place they take their child will be accessible and accommodate their needs. So when you think your friend doesn’t want to socialize or has become a bit of a hermit, it is usually because planning to leave is so much harder than staying home and watching Netflix!
- We feel guilty. We constantly second guess ourselves. We feel guilt over that one therapy or medication we chose not to try. We feel guilty that our typical children have to deal with issues that most of their peers will never have to learn about. We feel guilty that our spouses feel neglected. We feel guilty that cleaning the house is the lowest priority.
- We are mama and papa bears that will go to the ends of the earth to protect our children. We will fight for inclusion. We will advocate for our children’s needs. We will raise awareness about our child’s disability.
One very important piece of advice, please do not use the r-word. This word alone cuts us to the core. Many people say, “It’s only a word.” Well, this one word is offensive to anyone in the disability community. So offensive, that it has been removed from diagnostic criteria. What used to be referred to as “mental retardation” is now “intellectually disabled”. For more information on the campaign to Spread the Word to End the Word, please visit www.r-word.org .
If you have anything to add, please comment below!