I'm honored to have collaborated with so many special needs parents who I get the privilege of calling my friends. I asked friends, family, and even strangers to all bravely share with me what they would want the world to know about their special needs family given the chance to express their hearts. I took the most popular answers that were shared over and over again by these awesome parents, and put them into this article.
All of these families embody strength and a deep love for their children that knows no limits. Sadly, before becoming a special needs parent I had no idea what some families were walking through. They say when you know better...you do better...so I hope when you read this article.. it challenges you to do MORE than just hit a 'like' button on social media. I hope that it will inspire you to support special needs families in your community, to reach out to children you know with special needs who are use to being ignored, to have a conversation with your own children about including and loving all human beings no matter our differences, and encouraging a family that might possibly be walking through the hardest season of their life.
1.) Our children are the BEST thing to ever happen to us! Any loving parent would call their child a gift and a blessing. We are no exception, just because our child faces having special needs.
2.) I do not want anyone to feel sorry for us! My child is NOT a burden! It's difficult at times dealing with my child's medical issues, but my child is such a blessing and a light in this world!
3.) Being a special needs parent is a full time job. I am my child's care taker, and not many...if ANY people can safely watch my child. For that reason, there will be lots of times I won't be able to join you for that girls night, dinner out on the town, or even just your child's birthday party. Like anyone else, we still want to be invited though. An invitation, even if I have to decline, still goes a long way to make me feel included despite not being able to attend. I might not be able to attend this time, but hopefully the next time I will. Keep trying, if you do, I will too!
4.) One of the worst feelings in the entire world is knowing you're being stared at. And KNOWING that it is not for good reason. I understand it's human nature to be curious, I would be too. But my feelings would not be hurt, but rather thankful for you to ask me questions about my child instead of staring silently and wondering why my child has a wheelchair, why my child is banging their head against something they shouldn't be, or why my child screams at the top of their lungs. I would rather you ask. Plus, I love to talk about my child like any other parent, so give me the opportunity to.
5.) "Parenting Shaming" is a real thing. A lot of people feel the need to make comments to parents who worry too much about their children. This is where the hurtful name "helicopter parents" came from. I see such value to the idea of not parenting out of fear, truly I do. However, we (special needs parents) are playing in a TOTALLY different league when it comes to typical parenting vs. special needs parenting. BOTH are insanely difficult, exhausting, and trying! But typically developing children have a healthy sense of fear to keep them from danger. When a special needs child lacks understanding of safety, they are fearless. If I DON'T parent out of fear, my child is likely to get extremely hurt or even die! It's that serious! They don't understand what is safe, they don't understand what can hurt them, or that they can't put things they don't even know how to chew, in their mouths because they will choke. I can't take my eyes off of my child for even a second, that isn't being a 'helicopter mom', it's straight up survival!"
6.) "Please don't tell me that "it's just a phase" and "one day they'll be out of the house and you'll get to sleep again"! Because the truth is, unlike your child...mine will never leave the house, and I am his full time care taker for the rest of whatever days I have left on this Earth. I don't want people to walk on eggshells around me, but it also stings to have to hear these comments that for us..just aren't true."
7.) Please don't say to me, or to any other special needs parent for that matter..."I don't know how you do it!" Because the truth is...any loving parent would do what we're doing... which is taking care of our child and loving them the best we can. "I could never" ..trust me, you could..if you were in our shoes, you could too. Because from where we're standing..there is no other choice!
8.) We need a tribe just like everyone else! Every parent needs support. There are SO many activities for young parents, for young moms, because the world knows that in that particular season of life, parents need a break! For special needs parents, this isn't a season, but a lifetime rather that we need support! My church told us they weren't equipped to handle our child's needs in nursery, so we had to stop going. When my friend's child reached a certain age and my child who was the same age, was still rolling around on the floor and playing with infant toys they stopped coming around. We haven't had a date night in years because we have no family in town, and can't afford nurse care.
9.) We celebrate milestones too. You wouldn't miss celebrating your child's first time crawling, walking, or talking. Well, I wouldn't miss mine either...even if it comes way later in life! This journey has taught us to see miracles and blessings even in the small things.
10.) We still have a life to live. My family's need for groceries, getting haircuts, and needing to get out into the world for our sanity's sake doesn't stop because we're a special needs family. Which means...I'd greatly appreciate it if you would smile when my child is screaming in the bread aisle instead of glaring at me, or giving us dirty looks, or making us feel completely unwelcome. If I waited for a "good time to go anywhere" we would never leave our house.
11.) Becoming a parent means at some point you will experience exhaustion. Special needs parents generally live in a state of extreme exhaustion. One of the most gracious and meaningful gifts you could ever give a special needs parent, is to offer to babysit or watch their child for even an hour or two so they can simply SLEEP. Life changing!
12.) Above all else... I just want people to treat my child like the beautiful human being God created them as. You know that same awful instinct so many people get to put your head down.. and just ignore the homeless man as you walk by, because it feels awkward or uncomfortable? So instead you walk on by like they just don't exist. It's dehumanizing. It's not love. Nothing breaks my heart more than watching people notice my child ahead, and then walk right on by, head down, on purpose. It's soul crushing. Especially because if you just said hello, she could bless you with the worlds most beautiful smile!