My boys "hanging out" at We Care's camp

If your family is anything like mine, the approach of the end of the school year triggers both relief and panic.  I’m relieved that the kids will have a mental and physical break from the demands of school and homework. And it doesn’t hurt that we won’t have to be dressed, fed and out the door by 7:30 every day!  But it also brings on a very real panic – What am I going to do with the kids all summer???

Being out of their daily routine is challenging for all kids, but for kids on the autism spectrum, it can be utter chaos.  While a break in the routine is a welcome relief for some, it sends my son into a tailspin, and stresses me out!  It’s a real struggle to create the structure he needs to both soothe and occupy him.  We’ve looked into day camps, but they were out of our price range, far from home, and didn’t accept my other children.

But not anymore!  A few years ago I discovered the Autism Summer Camp at We Care.  It occupies a full two weeks in August, which is about when both my children and I start to lose it.  This one-of-a-kind day camp keeps my kids occupied for two-weeks during those desperate days of summer.  It is open not only to children with autism between the ages of two and 12, but also typically developing siblings.

I love that brothers and sisters get to stay together and share the summer camp experience, something which most families don’t have to even think about in their summer plans.  And for Regional Center clients, it is vendorized as an out-of-home respite, givingmoms and dads a much-needed break before school starts up again.

So now I’m good for August, anyone have suggestions for June and July?

To dig a little deeper into the ways the AFSP supports  families, I cornered Coordinator Vi Ibarra for a little Q&A.  Below are the results…

Q: What is you favorite part of being AFSP coordinator?

A: My favorite part of being the AFSP coordinator is getting to work  with all the wonderful parents in the group.  I am always impressed by how strong, motivated and giving they are.  Parents not only receive support from being involved with this group, but they also give back.  Parents volunteer to facilitate our monthly support meetings, parents provide resources and support to one another, parents offer to help me with events.  Even though they have their hands full with their own challenges, they still are able to reach out a hand to offer help to others.

Q: How does the AFSP support families differently than the other agencies or groups that are available?

A: I think what set us apart from other agencies and groups that provide parent education and/or parent support is that we also offer fun family events so parents have a chance to build relationships with other parents outside of a structured meeting.  During our Family Nights Out, at places like a movie or a baseball game, parents can connect with other parents and kids can connect, too.  Remember that when there is a child with autism in a family, every member of the family is affected.  The typically developing sibling of a child with autism can meet other siblings and see that they are not the only kid who has a brother or sister who has special needs.  It is important that the parents not feel isolated, and feel part of a community, and I think it is just as important for sibling to feel that way, too.

Q: Why is autism support for families so important to you personally?

A: I got involved with the AFSP just after my son was diagnosed with an autism spectrum disorder.  I remember the first support meeting I attended.  At a time in my life when I felt so overwhelmed and unsure about how to parent, it brought me such comfort to be among other parents having a similar experience.  I remember thinking “if these moms can do it, I can do it.”  Before that meeting, I wasn’t even sure that I could figure out how to be a parent to this special child.  And while I know I am nowhere close to being a perfect parent, I have learned from the support and example of my peers that I can be a good parent and give my children what they need.  I think that is all most parents want: to be confident in their abilities to manage what comes their way.  For me, it was the peer support that gave me that confidence, and I love seeing other parents grow into more confident and capable parents.

Welcome to We Care’s very first blog post!

My name is Audra McDonald, and I have worked at We Care for three and a half years.  But more than that, I am a busy mom of three great kiddos.  Each of my children faces unique challenges – autism, hearing loss, ADHD, and learning disabilities among them.  I know firsthand the challenges special needs parents face, from tantrums to IEPs and everything in between.  But I also know the bond that exists among those of us who love, educate and care for these very special children.

I wanted to start out our blog with one of the best descriptions of this journey that we are on – Welcome To Holland by Emily Perl Kingsley.  I hope you will join me as we walk this path together, supporting each other, celebrating our successes, and embracing all the amazing things “Holland’ has to offer.  We’d love to hear about your journey in the comments section.

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things …about Holland.

1987 copyright by Emily Perl Kingsley. All rights reserved.