Thursday, March 20, 2014

Tomorrow and Today

Tomorrow is World Down syndrome awareness day. March 21 was chosen because the date, 3-21, represents the three copies of the 21st chromosome that individuals with Ds have. 

That's tomorrow though. Today, I would like to focus on something else. Today, I would personally like to dedicate to the moms and dads, the caretakers of individuals with Ds and others with special needs. 

Having a kid with special needs is hard and anyone that tells you any differently is lying. Raising kids in general is tough, so any time you add in all of the factors that kids with special needs have, you just expound all that toughness. All of those normal worries that parents have? Multiply that. All of those questions that parents have? Multiply that. All of those tearful nights wondering if your kid is getting enough? Multiply that. All of that pressure, both external and internal? Multiply that. 

We all want to do what is best by our kids. But when you have a kid with special needs, you feel like so much is stacked against you. 

That is why I dedicate today to the parents of kids and adults with special needs. I promise you, no matter how "with it" they are, they still need encouragement. 

Until people see me writing in our planner or hear me on the phone making appointments, they don't realize how involved our kids schedules are, and we have more to add. Until friends have seen some of the stuff we work on and had me list it out, they haven't realized how deliberate we have to be with our kids. Until friends have seen Johnny, side by side with another kid his close age, they don't realize how daunting that growing gap is becoming. Until friends hear the comments and questions from strangers, they don't understand how tiring it can be. 

It's not that parents of kids with special needs want pity or tears. In fact, most of the time, we feel pretty amazingly and indescribably blessed (more on that tomorrow). But we usually have a lot on our plates and having people that are compassionate, kind, and encouraging, helps that plate look a little more manageable. 

I'm not asking for much today. And I have a ton of support in my life, so this is focused outward. In the next day, week, forever, however long, be an encourager to someone who is or who has raised a kid with special needs. Smile at them in the grocery store and tell them 1) how beautiful their kids are and 2) how great of a job they are doing. Ask your friend if they need help watching the kids for a doctor appointment or therapy session. Ask your friend specifics about what they are working on, how the progress has been seen, and what they would like to accomplish next. If you spend a lot of time with their kid(s), ask if you can work on something while you visit, sometimes it is as simple as reading a book or working on a new sign. When you know that someone has had a rough week, offer to visit with them or take them out, when you get together, ask if they want to talk about the rough week or if they'd rather forget about it and talk about something else. If you know someone with a prenatal diagnosis, smile, hug them, tell them you love them, say you will be praying for them, ask them if they need anything, and bring them dinner. If you meet an adult with special needs, be patient, smile, and be kind. If you meet an adult that is working with special needs, be extra patient, smile, and be kind. 

Johnny has made us into new parents in the time he has been in our lives. We see the world differently now because of him. We fight for him (and sometimes with him) every day. This road can be rocky and I am so grateful for the parents who came before me that forged a little bit of the road. I am also grateful for the parents walking the road alongside me, even though they may not always take the same steps we do. Our focus is for the kids to walk their own road one day, but until then, we walk hand in hand with them. Today is for all the parents walking hand in hand with their kids. 

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