It’s been thirteen days since my last post. (I feel like I’m in a confessional. Go say ten Hail Marys, five Our Fathers, three rosaries, and repent.)
Like any sinner, I have myriad excuses for not writing on my blog. I had to travel to a funeral. Another in-home aid tendered her resignation. I had to yell at twenty different people four times each so I could get a neurology appointment for my son in this century. My sister got sick and I had to babysit her beautiful children. Conor had a tantrum.
You know, life.
To be honest, I’ve been writing my annual fundraising letter for a local autism nonprofit, Pathfinders for Autism. I’m a board member, thank you. (Head bob here.) When I was President of the Board, I used to don a tiara but I had to give that up after my two-year term ended. Now I curtsey to the current president since I’m just a common board member. (B.J., our current president, has declined to wear the tiara, I have no idea why. It’s ♪ fabulous ♪♪.)
Boy, I tell ya, nothing makes your friends run away faster when they see you coming than a good ol’ ask for their money. It’s not awkward, no, not at all.
It’s ok. I’ve gotten comfortable asking people for their money; I used to raise money for a different nonprofit to earn a paycheck. It’s not for me personally, I say to myself. It was my Director of Development mantra. (Please pay no attention to the tiara; it was a gift. From myself.)
It’s for a good cause. You’ve had a good year, it’s time to spread the wealth a little. Generate some good kharma. Give back to your community. We’re a 501c3 you know, April 15th is right around the corner!
People are amazingly generous. Really, they are.
I thought I’d share the letter with you, as a sort of reminder of the mitzvah of tzedakah. That, and I think it’s a really great letter about Conor's year and pitching a really great nonprofit that strives to improve the lives of individuals with autism every day. (If I do say so myself.) Pathfinders has a great free resource center.
So here goes--
So here goes--
On New Year’s Day, Conor popped out of bed at 6 am, shouting—“It's a new morning! It's a new year!” Then he slammed open the door in his bedroom, setting off the big bell attached to the doorknob. (I had been lying in bed with him since he actually woke up much earlier but I wanted him to stay quiet. So much for that!)
Yes, it is a new year, Conor. And your father and I are hopeful that it will be a calmer one. (I know I have MY fingers crossed!)
Despite having one hospitalization under his belt in late 2010, Conor’s behavior continued to be challenging throughout the first half of 2011. So, after another short-term hospitalization at Sheppard Pratt in mid-June, we admitted Conor to the Kennedy Krieger Institute’s NeuroBehavioral Unit.
The NBU treats severe problem behavior displayed by individuals with autism and intellectual disabilities. You can receive outpatient services in your home or actually have your child admitted into the hospital for a residential stay. Treatment combines behavioral approaches with medical ones. The professionals at Kennedy recommended inpatient due to the intensity and severity of Conor’s monumental tantrums.
Deciding to place your disabled child in a locked hospital ward due to his behavior is frightening and sad. It was emotionally difficult, and heartbreaking, mostly because Conor didn’t enjoy being there. And he wasn’t taking it quietly! But he was getting the help he needed. Finally.
Kennedy discharged him from the unit just before Halloween, a 4-month stay. He’s made a remarkable improvement, with Kennedy reaching their goal of an 80% reduction in behaviors. Of course, this means that he continues to have truly breathtaking tantrums, but the frequency has diminished significantly and our children are able to be in the same room together.
We eat dinner as a family again, and walk the dog together. We’ve even taken a short trip to visit Jim’s family in Connecticut. Life with Conor continues to be a challenge (I suppose it always will be) and there are always two people in the house with him in case of a tantrum, but, slowly, we are getting back to a routine.
Having a child with autism is extremely challenging, to say the least. Coping with a developmentally disabled child who has extreme behavioral problems as well, you become so isolated and alone.
As you know, every year I ask friends and family to support an organization that helps families like ours—families that struggle to care for their loved ones with autism. While we were fortunate that Conor’s school was able to shepherd us through much of this difficult process, many families do not have that to lean on. And so they call the Pathfinders for Autism Resource Center and talk to one of our staff members. They ask questions, talk about current challenges, and work with our families to find a way to get the help and support they need. It’s invaluable.
I know, I volunteer there and I have picked the brains of Trish and Shelly many, many times over the years. (I sound like I’m from the Hair Club for Men. I’m not just the owner; I’m a customer too!) We’ve recently renovated our web site so that parents can see what they need to do for their loved one by their age. So very important as our children get older, their needs evolve, and services get scarcer.
So, here goes—please help support our mission of improving the lives of individuals with autism by giving to our 11th Annual Pathfinders for Autism Golf Tournament & Awards Dinner on Monday, May 14, 2012. It’s our biggest fundraiser of the year and one of the best charity tournaments around. We hope you can help. No amount is too small; no gift is too large. (I couldn’t resist, sorry.)
A $300 donation (by April 1) gives you a tee sign at the Tournament. Everyone gets recognition in the program book, of course. We have foursomes available if you’re interested in teeing off with the group. It’s always a fun time! Let me know; I’m at firstname.lastname@example.org.
303 International Circle, Suite 110
Hunt Valley, Maryland 21030
Make sure you put my name and “Golf 2012” on the memo line so we can accurately track your donation. (Helps me look good at the board meetings.)
You can donate online at www.pathfindersforautism.org. Click on the Donate button. Designate Golf 2012 or put our names in the Dedication field!
It's really hard if you have a family member with autism. But the thing that we could do best aside from giving them the best medication is loving them unconditionally.
If love were an effective drug for autism, my son would be cured. Thanks so much for your input and for reading my blog!
Oh how you must love these "pearls of wisdom"
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