20 Things to Know About Special Needs Families

Guest Blog Post- Shannon Thomas

This weeks blog post is brought to us by Shannon Thomas.  I was really excited to read this list.  I hope to use these tips in my family life.  I will definitely hold door for others when needed and let my kids say "hi".  Hopefully we will hear from Shannon in the Future.  This is part one of a two part series. 

As a mom to 2 special needs kids, I find that people sometimes don't know what to do with us. We have never had anyone be outwardly unkind, it's more plain awkwardness. Even our closest friends have struggled, sometimes just drifting away, because they don't know how to handle our normal. If you have a friend with a special needs child, or you just want to be more aware in society, here are some pointers from a seasoned professional.

1. It is ok to ask questions. All of us are passionate about our children, and most of us have become reluctant experts on something because of them. We want the world to understand them, be easier for them, embrace their differences. Plus, it's healthy for us to talk about what we've been through and where we might be headed. So, you have my permission. If you have a question, it's ok to ask.
2. Ask carefully. I personally am very fortunate that both of my boys are healthy and doing really well. That is not always the case. Sadly, some of us are facing the mortality of our children, something no one should ever have to look in the eye. Many of us are traumatized, overwhelmed, lonely, exhausted. Having a special needs kid can be like having a newborn…for years, maybe forever. So, make sure your questions are caring and phrased with respect.
3. Don't pretend not to notice. We know our kids are different. My nine year old wears a diaper, chews on his clothes, and hits himself for fun. That's pretty hard to miss. It's ok to be caught off guard, concerned, nervous, even charmed. We feel the same way about your normal kid.
4. Don't tell us "super awesome outcome" stories. Unless you are prepared to give details, including phone numbers, email addresses, and office hours. If you share something helpful, be willing to answer a million questions. No one likes a wild goose chase. Special needs families are short on time and resources as it is. So, if you want to tell us about your cousin's great pediatrician who can cure autism, please do. Just make sure you know the doctor's name, ok?
5. Don't tell us "super awful outcome" stories. Ever. We have enough to worry about.
6. Don't park in handicapped parking spots. Not even for a second. I know that super convenient spot is tempting when it's raining and your three year old really has to pee. Just remember, that spot isn't just about proximity to the door, it's about accessibility and safety. Kids with special equipment may not even be able to get out of a vehicle in a normally sized spot. I can't tell you how many times my son's wheelchair or walker had to be left behind because we couldn't get it out of the van. (Also, if you have a handicapped placard for someone who often rides in your car, please don't use it if they are not with you. The placard is assigned to the individual, NOT the vehicle.)
7. Hold the door. It can make the difference between my kid falling down and me dropping my groceries, or us successfully navigating yet one more exit where the blue wheelchair button doesn't work.
8. Be patient and make room. Everything is more complicated, takes longer, and for some odd reason, takes up exponentially more space. Special needs families are often flustered, disheveled, and late. It's embarrassing, and we hate having to make everyone stand up, so we can get to our special seats. Our kids are probably crying, and we are probably dropping things. Your kid may not be able to see The Fresh Beat Band for a second while we try to squeeze by. The more helpful and friendlier everyone is, the quicker we can all sit down and be quiet.
9. Let your kids come say hi. Often, people are worried that their child may say something "rude", or hurt a fragile-seeming special needs kid, so they feel the need to micromanage every interaction. Your caution is appreciated, but often not necessary. If the special needs parent seems relaxed, there's no need for you to hover. Be mindful of any medical equipment, model kind curiosity, but let kids be kids.
10. Don't put us on a pedestal. We are just like you. I know people are trying to be nice when they say things like "I don't know how you do it." When we were first presented with the fact that our first son had autism, or that our second son was deafblind, my overwhelming thought was "I can't do this." I still think that on a regular basis. I promise you, anyone faced with a disability in their child, has shining moments AND abysmal failures, just like any other parent. We are not superheroes, saints, or warriors. We are normal moms and dads, with the same fears, insecurities and hopes. We love our kids, we want them to survive, thrive and be happy.

I am striving now in my 30's, to live an authentic life that brings joy to my family, and sustains me as I care for them. Two of our four kids have special needs. I have been an "at home" mother since our first child was born, but I am always looking for ways to de-stress, feed my intellect, and nourish my spirit. Since we are a big family on a single income, I'm also very into saving time and money. I have a passion for sustainable, kind living, without sacrificing fun and joy! Read more at www.mishmashmama.blogspot.com. You can find Mishmash Mama on Twitter @mishmashmama, on Facebook.com/MishmashMama, and on Pinterest.com/mishmashblog