I had the pleasure last week of having a cup of tea with Ruth Quinn from www.parentsupportgrouponline.com , which I am a member and she had agreed to answer some questions for me.
If you could tell us a little bit about your website, when it started and why? What can people can find there?
Me and another mom co created the website parentsupportgrouponline.com because we needed information, and we needed to connect with other people (locally) who understood what we were going through. The website is a Hudson Valley based message board for parents who have children receiving therapy (physical therapy, special education, occupational therapy, speech therapy, etc).
Discovering that my son had special needs was a difficult journey. I suspected it when he was an infant and he was developing very differently from his twin sister, but I allowed myself to be reassured that “boys develop differently than girls,” and that he would “catch up.” As time went on, my gut feeling became stronger, and I was secretly terrified. My friends and family, in an attempt to be optimistic and reassuring, left me feeling like a neurotic new parent. At the playground, he seemed like a normal toddler, but it wasn’t what he was “doing” that worried me… it was what he was “not doing” such as engaging with other kids, seeking me out, or being possessive of toys in the sandbox.
When my son was 22 months old, he was diagnosed with autism. I felt both vindicated and heartbroken. During this time, I was thrust into the world of early intervention, developmental pediatricians, and acronyms (tons of acronyms!), and it was isolating and confusing. As I began to navigate the maze of services I was also dealing with conflicting emotions. I quickly discovered that my role as a parent was to advocate for my son.
The Parent Support Group website started very simply when me and another mom met each other on a parenting website – hudsonvalleyparents.com. We both had young children in early intervention, and we were both concerned and scared. We started to meet regularly, usually at Starbucks in New Paltz, and soon, other moms joined in. It became apparent that there was a lot of support, information, and resources that needed to be shared. After tons of email exchanges that went back and forth, the information kept piling up, and getting lost. In 2007, the website was created – parentsupportgrouponline.com. What started out as a cry for help, and a couple of meetings, has grown into a network of over 200 people from the Hudson Valley.
What made you want to take that extra step and share this information with others?
There is so much to learn when you first begin this journey. It isn’t all clearly laid out, and there are resources out there that are not easily discovered. For instance, respite (money for babysitters) and free diapers for children with developmental delays. Also, it is up to us, as parents, to make sure our children are tested in all areas of suspected concern. So, without knowing that occupational therapists work with children who have sensory issues, it is hard to know to ask for it. Then comes the emotional roller coaster that goes along with this process. Dealing with husband’s who are in denial, family members who give parenting advice, friend’s who start to distance themselves, and the gut wrenching fear of not knowing what the future holds for your child.
The website is private, and parents need to answer questions about who they are before they can register. This protects the privacy of the parents on the site and allows them to feel free to vent and say what they need to say.
I know the you incurred some expenses putting up the site- last year you and the members had a yard sale.
For the most part, the website is easy to run. However, I am not very technical, and we have run into problems. When we switched web hosting, the site crashed and I was panicked. We lost everything. Luckily we were able to recover it, but it cost us over $600. We had a yard sale and we raised the money to pay the bills. If I had more time, and weren’t so overwhelmed with my daily life, I would incorporate the site into a non profit. This is an ultimate goal. We have web hosting until 2011 (which cost $150) and each year it costs us $10 to use our name.
Running this group has been such a challenge and such a reward. New members consistently report how MUCH they NEEDED this type of support to face the rigors of having a child with special needs. They echo my own thoughts, when I looked for support and found nothing available.
I believe in this site. i believe in its value and I think it is an important community resource. I see us growing daily – with 2-3 new registrations a day!
Thank you so much Ruth! Ruth is a mother of 3 children and I am thankful that she finds the time to run such a site. Please check it out- even if you are not from the Hudson Valley this site is full of information and also support.
Anonymous says
VERY nice article. It’s nice to know someone else felt the same as I did when my son was first diagnosed with autism.