Advocating is one of the best things you can do for your children
So your child has special needs. You've gone through steps to grieve it, accept it, educate yourself and move forward.
But part of moving forward is making the decision of whether you want to become an advocate for your child's cause. You have made this decision with your actions, like it or not. Either you are advocating or you are not.
But maybe you aren't ready, or maybe you just need a little encouragement. Maybe there is a surplus of maybes, but I still ask you to let that encouragement be your child. On the fence? Consider exploring these scenarios:
I want to help, but I don't even know where to begin.
If you want to advocate, you must first do some research on your own and decide where your skills are best suited. Discover a local or national chapter for the cause, and learn everything you can about it. Get involved. Find out what they need, and decide if the mission of the organization is something you believe in, and if it's something you can give your time and talents to. We all have talent!
I want to help, but I don't have enough time.
Like any parent, we are all busy, and you may have less support than others, but we can all find time. Put some time on your calendar and choose to make time to advocate.
If you are a working parent, perhaps you take 20 minutes during your lunch hour to make some calls or send some emails or even run an errand for the cause.
I want to help, but there are already plenty of people advocating for this cause. They don't need me.
This might sound true, but think of how expensive research and change really is. Think of what it costs to keep a nonprofit functioning.
They have electricity bills, marketing campaigns and payroll, in addition to major groundbreaking research and federal lobbying to fund.
I want to help, but I don't really have any fundraising or event planning experience.
If your child has a rare disability, like my 4-year-old son, Carter, with Williams syndrome, you should know it's not just about raising money - it's also about awareness.
It might be rare, but it happens - someone close to a family recognizes the signs of a rare syndrome because they were educated by a local awareness initiative.
You might not be able to provide a check for $5,000, but awareness, well, anyone can spread awareness. Yes, even you! You just might save a life.
I want to help, but I don't want to pressure my friends and family to get involved.
I get that. It's not easy asking things of others - especially if it's something you aren't used to doing, well, ever. But, remember you aren't asking for you, you are asking for your child. What wouldn't you do for your child?
And you can't expect others to advocate for your child if you aren't willing to either. It has to start somewhere. Plant the seed.
I want to help, but I have enough on my plate.
There is no shame in knowing when you have too much going on already. After all, we've all been there. Just decide when you want to help, or save up some money to help give a yearly donation to the cause. Or evaluate if there is something you can surrender to advocate. It is a rewarding effort you likely won't regret.
Just a week ago, I helped in the coordination of the local FM Walk for Williams Syndrome Awareness. We raised almost $10,000 and had 170 walkers come out for the event.
Two years ago, had you asked me if that would be possible, I probably would have said, "Not in Fargo, not in a million years!"
I unmistakably see things differently now thanks to Anne Nelson, another WS mom from Fargo. We did it!
I want to pass on to other parents of special needs children out there, it's OK to procrastinate until you are ready, it's OK to be scared, but once you are ready and you take that step, it is valuable on so many levels.
Kerri Kava is the Newspapers in Education coordinator for The Forum. Her 4-year-old son, Carter, lives with Williams syndrome.