Do you know a warrior parent? Are you one yourself? You know, the ones who wake up haggard, dreading the day just a little even as they are grateful for another chance to get things right. If they have time, and many don’t, they put on their warrior paint. For some, the paint is a healthy coat of makeup, hairspray, or a fresh shave. For others it’s a two-minute shower, or a hot cup of coffee. Some are lucky just to paint themselves with a fresh change of clothes or a quick brush of the teeth.
This probably describes many parents you know, particularly those with very young children. But I think it is particularly true of parents who have children with special needs, this feeling that you are preparing for battle each day. Because progress is often slow or hard to measure for our children, it is easy to feel stuck fighting the same skirmish. Add to that the fact that many days involve rounds of phone calls and running to different therapies or doctors’ appointments, struggling to get everything your child needs to be his best. I personally find it incredibly hard to deal with my own “Groundhog Day” — the frustration of teaching a task for what seems like the 100,000th time. My son, who has Down syndrome, is now 26 months old, and there are some things we’ve been working on since he was about 7 months old. Like please don’t throw your drink when you are finished with it! Countless cups have crashed to an untimely death on my kitchen floor.
There are other fights. The fight against exhaustion. The daily fight to achieve even the smallest things, like getting your child to keep his shoes, socks and braces on! The fight against systems that appear stacked against us. School systems, insurance companies, hospitals, or even cruel nature itself, which sometimes subjects its most innocent citizens to the most grueling medical conditions. A fight, hardest of all, against our own inadequacy in the face of such a large task. A fight against the insensitive or simply unaware comments people make offhandedly. Comments that can linger long after the speaker has forgotten them. What’s wrong with him? Can’t you control that behavior? You know she’ll never … (fill in the blank: read, write, talk, be “normal”). Your heart will break again and again, some will say.
Here’s what I say: Your heart will break, but it will mend again. We will mend it together. When we band together, when we say “Take my hand and I’ll take yours,” we can lighten each other’s burdens. We are warriors, but let’s not get so tough that we don’t know when to put down our shields. We can stop, take a deep breath, and talk — calmly, with information on our sides and friends at our back. Let’s give people who haven’t been in our shoes the benefit of the doubt. Let’s educate them, inspire them, share our newfound understanding of the human condition.
When things start to fall down around us, let’s not drown. Let’s pick up the phone, turn on the computer, and reach out. If others in your family are also too burned out to give you solace, find a new friend. I challenge anyone out there who is a special-needs parent and does not have a friend in the same boat, to find one. And it doesn’t have to be someone whose child has the same diagnosis as yours, though that is probably the most helpful. Trust me, it will change your life. You will feel uplifted in a way you cannot possibly imagine until it happens.
There are plenty of resources. In the Queen City area, CharlotteMommies is a wonderful place to start. The site has a special-needs forum, where parents of children with all sorts of diagnoses or issues put their heads together to figure things out and provide moral support. If you live in any of the counties around Mecklenburg, there are area forums too. (In fact, The Mommies Network, as it is called, currently operates 112 Internet communities across 33 states. Find one near you.) Each community has a special-needs forum.
If your child has Down syndrome, though, the best resource in the area is the Down Syndrome Association of Charlotte. It is a thoroughly wonderful group of people, working hard to give children with Down syndrome and their families the best that life has to offer, and also providing endless opportunities for parents to connect, both online and in the real world. On the home page, www.dsacnc.org, there is a Yahoo support group that you can join. Take some time to poke around the Web site and see what materials are available through the Lending Library (look under “Services” on the menu bar). If you are new to the Charlotte area, be sure to join one of the association’s social groups. And of course, the association has a few Facebook pages. One is for families with children up to age 3, and the other is for children from 3 to 9.
Another great group with chapters nationwide is The Arc of the United States. It is an advocacy, support and educational group for people with intellectual disabilities and their families. If you find your local chapter, they could probably direct you to some fellow parents. If you don’t like those ideas, try asking your Early Intervention service coordinator to put you in touch with other moms or dads. If your child is in school, ask his teacher. If you are a churchgoer, check with your church.
Here’s another tip: Even if you have your fill of friends, when you meet other moms or dads whose children have the same diagnosis as your child, take a phone number or get an e-mail address. And then call, or write. Don’t wait. It’s amazing how just a conversation can open new doors you never would have known existed. And once you go through that door, there will be many others. Each new person you meet is like adding another branch to your life’s tree, reaching out further and higher into a world that used to be a mystery. It’s also a great way to make sure your child has access to the best available services. Even in this technology-obsessed world, the best way to find out about cool things is still word of mouth.
Don’t think I’m discounting the friendships you already have or will make with parents who don’t have a special needs child. A true friend will understand, whether she has been down your road or not. So have lunch, take a girl’s night or a guys’ night, get on the phone, send that birthday card, nurture those connections. Your child needs you to have those friendships as much as you need them for yourself.
Often it is when the stakes are highest that we feel the most interconnected. There is a quote, so true it’s beautiful, in a book co-written by the journalist Joseph L. Galloway about the harrowing battle of Ia Drang in the Vietnam War. The book is called “We Were Soldiers Once…And Young.” Some may recognize the quote from the 2002 movie, “We Were Soldiers.” It goes like this: “They went to war because their country ordered them to, but in the end they fought not for their country or their flag. They fought for each other.” This resonates with me when I’m feeling unmotivated. Of course we’re all fighting for our children. But if you think hard about it, hard enough that your head starts to hurt, you might realize that we’re also fighting for each other. If you pave the way for me, then I can pave the way for the next person. By our collective efforts, one micro-step at a time, we can make a huge difference in how people with intellectual disabilities are perceived. So go to bed. You have to get up early tomorrow.