I’m a special needs mom.
That sentence is still a difficult one for me to say, considering the fact that it’s still a fairly new revelation. I’ve always been a special needs parent, I just didn’t know it. Five months ago my boys were diagnosed, but this disorder has apparently been with them since birth.
Now that I do know, I try to embrace my new life with grace, but I crumble often. Only through God’s help am I able to pick myself back up and continue on.
I try to walk by faith, not by sight.
When asked what it feels like to be in my shoes, I don’t know how to respond. All I know is that I’m not the same person anymore. This new world I’m apart of has given me a different view on life. The hospital stays, appointments, paperwork, bloodwork, medication side effects and fear of the future have completely changed who I am – forever.
I’ve gained beautiful things too. My purpose in life is now to love deeper, enjoy every second, let go of the little things and cherish my children for exactly who they are – not who I thought they’d be.
One thing I’ve been told to do, is to tell the people around me how to love the new me. I thought it may help to write a letter on how to love a special needs parent. I hope this will help anyone who struggles to be a friend to a special needs mom or dad. No, we are not all the same, but I bet our similarities outweigh our differences by leaps and bounds. I pray this helps someone, including me.
Somedays I can’t help but talk constantly about my children’s disorder. The way I process information is to dive head first into learning everything I can. Other days, I shut down and don’t talk about it at all. The best way to love a special needs parent is to just listen to them, in whatever mood they’re in. Listen to the triumphs, listen to the struggles – but just listen. Sometimes we just need to vent, and sometimes all we want to hear is that we’re not alone.
Try to empathize with their situation. No one quite understands what it feels like to walk a mile in our shoes, and why should they? You don’t understand until you go through it, it’s that simple. There are some people that have so much empathy for us that they become masters at comforting us. Empathy doesn’t make them understand every difficulty, but it makes them compassionate and considerate – two things we deeply crave in a friend. Try to be especially considerate with your words.
Accept their children the way they are.
One of the biggest things you can do for a special needs parent is to just accept their kids the way they are. The parents had to grieve the life they thought they’d live and the life they thought their kids would have, but now they focus on acceptance. The worst thing you can do is say things like “They should be doing this,” or “Why can’t they do that?” We love our kids for exactly who God made them, the best thing you can do for a special needs parent is to accept their kids just the way they are.
Don’t guilt them.
Some days I don’t want to get out of bed. Sometimes going to the store is a struggle laced in panic, so if I can’t make your party or decline your invitation, please try to understand. Please be kind. Please understand that it’s nothing personal to you, I just have to guard my sanity with a vengeance. Never guilt a special needs parent, because if they’re anything like me they are already living in a constant state of guilt.
Be patient with them.
I’m not the easiest person to love. I’m opinionated, stubborn and very introverted. This experience has probably made me harder to love, and sometimes I worry that I’m not a good friend, wife or daughter anymore. I’m so caught up in trying to be a good mom to my kids that I may pull away from others, but I promise it’s not intentional. Shortly after our boys diagnosis my best friend asked me how she could be a good friend to me. My sweet friend said she was afraid to talk to me about anything trivial in comparison. Well, my response was the same. That is exactly how I feel. I’m so caught up in my own stuff, I’m not sure how to be a good friend to her either. Yet, her presence is all I need, which she offers so well. So if you have a friend or loved one with special needs children, your presence is all they really need. They just need to know that you’re there if you need them, for better or worse.