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Q&A Session 2 with the Director of The Son-Rise Program

Topic: Playroom Volunteers

Q: Dear Bryn:
Ed, Julianna and I were at the Autism Treatment Center of America for our Son-Rise Program Intensive in late January of this year and we were so pleased with the progress Julianna made in one short week. As her last session in the playroom came to an end, I sat there in tears because I was so touched by the staff’s commitment to her and her delight in being in the playroom. I was totally up for the challenge of coming home and creating the same opportunity for her at home.

Ed is a stay-at-home dad, and I work outside the home. We pulled her out of her Special Education Pre-School because we felt that she would be seen as a behavioral challenge after having had free run of the playroom. We had most of the essentials of our playroom together and quickly moved on getting the remaining pieces in place.

Shortly after we returned home, we put together a flyer that we posted in lots of places, including the local colleges, and e-mailed it to everyone we know, asking them to pass it on to their friends, etc. I also ran an advertisement in the local newspaper for volunteers. The flyer was modeled after several in our Son-Rise Start-Up binder and included a photo of one of us playing with Julianna in the playroom. The end result was zip, nada, not one volunteer. In part this could be due to the low unemployment (approx. 2.5%) in our part of northern California, also known as Telecom Valley, located north of San Francisco in the southern tip of wine country.

So, we went to plan B – pay people. Again, we posted and ran ads. We held an information night at our home where we explained the program, observed Julianna in the playroom, showed the BBC video and had people complete applications. End result, after checking references, etc. we hired 4 people. One participated in the program for 3 weeks and quit because it required more energy than she felt she had. One accepted an afternoon slot and never showed up and didn’t return phone calls (after receiving glowing references!). One participated for a couple of weeks and bowed out due to demands of her college courses and the fourth, who is a jewel, just tonight told us she is moving back to San Francisco and would like to be involved but can only do so one day a week on a rotating schedule.

We ran a second ad a couple of weeks ago, had a second informational night, etc. and are in the process of trying to work out the schedules of additional facilitators to work with Julianna. However, we are starting to get gun shy – we clearly explain the time commitment we are looking for (minimum of 7 hours a week) and the duration (minimum of 6 months) and yet we are not being successful.

The good news is that Julianna is benefiting from the playroom time she is getting and is now saying a couple of four-word sentences (I need more juice. I need more bubbles). The less-than-good news is we are getting discouraged. Ed cannot do the playroom time full time and I can’t quit my job and stay home. Any suggestions on what we can do differently regarding recruiting people would be greatly appreciated! What I would really like to do is move into Unit Two [a housing facility at The Son-Rise House in Sheffield, MA.] or minimally recruit a few of the wonderful staff there. I truly cannot express how much I admire, appreciate and love everyone that worked with us in January.

Thank you and please give my best to William and the rest of the Son-Rise staff.

Name: Victoria and Ed P. State: CA Child: Julianna, 4.5 years Diagnosis: PDD and ataxic CP

A: Dear Victoria,
I see that life has offered you some additional challenges…so the question is, how do we face them? We cannot control the actions of others, (volunteers leaving, not responding etc) but we can control our response to them. So…how do we want to respond?

If you remember our idea on “Becoming a Force of Nature” – one paramount aspect is PERSISTENCE. The willingness to ask again and again and again for what we want. The willingness to say, “I cannot be stopped”, “I am going for what I want”. I know it can feel challenging when you have put so much into something and it doesn’t work out. I know that there must have been a tremendous amount of energy that went into each attempt to recruit. Firstly…let’s celebrate this! You are trying! You are doing everything you can for your beautiful daughter – this is wonderful! The reward for our actions is the love with which we do them…and then the outcome is our bonus. Hurrah for your efforts! Hurrah for your attempts!

We want Julianna to continue to try, to continue to put out her best effort, even if we have asked her 100 times to look into our eyes or have a longer conversation. Now, we must be willing to do the same ourselves.

My suggestion to you is two-fold:

I would sit down and consider the way in which you have presented yourselves and the program – Is there anything you can change? Modify? Enhance? And then I would see what you can add or alter to be even more effective. (feel free to schedule a support call – for all Intensive Families, or a consultation if you feel that would help)

Persist! Believe! Continue to go for what you want, to pursue volunteers, to go out into your community and believe that this can happen for you and your family. Years ago, when I first began to deal with my Arythmia, my heart would beat at 180 beats per minute in my chest and I could not breathe well and I felt dizzy and I couldn’t walk. I remember trying to relax and focusing on getting my heartbeat back to normal. I remember the times when I thought that might not be possible. I’ve been there, I understand that it can be a challenge…but, as Helen Keller said, “Life is either a daring adventure, or nothing”. Today, I can run, I can control my heart (most of the time), I can dance, I can sing…but I had to try, I had to try 1000 times and then 1000 times again. Each time that I did, I became a greater, bigger version of myself.

I know you can attain your dream of creating this program that you want – you simply have to dare to continue – and dare to make it so.

With much warmth to you,

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