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Community, Inside and Out

Quinn playingWe’ve been really busy here at the site. It’s wonderful to see new members, new groups, new connections and support throughout the site. It’s what we envisioned when we talked about this little idea to build a community for parents of children with special needs.

What I’m particularly excited about is that there are new members with adult children with special needs. Some came from the site Family Support Clearing House – a fantastic organization who we are partnering with to bring their community a forum as they change how they do things. I know for me, I tend to only think about the day-to-day life of kids under teens years. What keeps me up if I can’t sleep, is the thought about my kids’ futures and how best to help them be a productive (and happy!) member of mainstream society. Our new group, Adulthood, Independence and Special Needs will allow these discussions to happen and I’m eternally grateful for the parents on the group already who’ve shared their stories about their adult children.

As part of outreach, both in the mainstream blogging world and to other parents of kids with special needs, I had the pleasure of attending BlogHer. In less than two weeks I’m going to the Type-A Mom conference and excited to be part of a smaller gathering of bloggers and site owners.

I’m looking forward to learning new ways to reach other people about the site – in particular parents and professionals. At only a little over 4 months old, we’re thrilled at the growth we’ve achieved in such a short time – thank you for making it possible! It is because you are here that we are motivated to do more and do it better. If you have any questions about navigation or ideas about what else you’d like to see on the site, please let us know!

Recently I was asked to join a Parent Advisory Council for Children’s Healthcare of Atlanta and work as part of a small group of moms who get to bring ideas and offer feedback on all there is to patient experience. Being a part of this group was born out of an observation I made on twitter about how families who come in for clinic and treatments all the time didn’t get the same privileges as kids who are in-patient (like a 25% discount at the store and cafeteria, which isn’t a big deal for ONE visit, but if you are there over 200 times over the life of childhood kidney care and follow up, it means something) and they contacted me about the issue and also asked if I’d be interested in being on a newly formed council. Yes! I said and so here I am. Feeling like I am a part of something bigger. It makes this crazy special needs road I am on a little better I think when I can step outside of my own sadness and fear (and exhaustion). Please let us know of ways you serve your community to give others ideas about how to get involved to make a positive impact, we’d love to share it!

Through the PKD Foundation, for which I volunteer, I was able to have a chance to talk to nephrologists at an annual association meeting about the parent experience in raising two kids with ARPKD – the disease my kids have. It was rewarding but also very empowering. I think it’s important to talk about the quality of life on the inside of special needs parenting to a large group of people on the outside. While I know doctors know some about our lives, I was happy to share what it meant to me to hear these words when my daughter was just a few days old, “With kids like these, take them home and love them as long as you have them.”  Tell us how you’ve been able to share your story outside our demographic (of other special needs parents), we’d love to hear about it and share it with our members.

I’ve loved being here with you all and I appreciate your willingness to share your stories with me and with others. Through my kids’ kidney failure, dialysis, transplant, educational issues and emotional fallout it is so good for me to know that others are there and share the same journey. While you may not deal with these specific conditions/treatments, I know you understand sadness, fear, stress, financial strain, and what it means to be a parent of kids with special needs.

And I don’t feel so alone. So thank you.

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