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Lindy

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1 reviews

Review for Down Syndrome Network, Tempe, AZ, USA

Rating: 5 stars  

My husband and I were blessed with the birth of our first child, a baby girl, on December 9, 2008. She was diagnosed as Down Syndrome at delivery which threw us for a complete loop. Our doctor introduced us to a mutual friend, also a mother of a baby with DS, who then introduced us to the DS Network. The DS Network has been such a blessing to our family. DS Network maintains a very informative website and offers valuable information by way of an email distribution list. We have found the other families to be supportive, compassionate, and willing to help out in any way possible. We are thankful for this new "family" and truly appreciate the ability to walk this path with such kind people.

I've personally experienced the results of this organization in...

DS Network keeps our family (and others) up-to-date with current information associated with the early intervention programs. DS Network also has shown its effectiveness in scheduling activities hosted by medical and other professionals.

If I had to make changes to this organization, I would...

I would outsource activities, much like is already being done, to pull professionals from various fields to keep educating parents about the latest techniques of working with a child with DS. I am especially interested in the early intervention process.

What I've enjoyed the most about my experience with this nonprofit is...

We have met so many kind and caring familiies through this organizaion. We have also learned very useful information from various speakers and/or professionals who volunteer their time to educate the parents of children with DS.

The kinds of staff and volunteers that I met were...

The group has been so supportive to us from the time our daughter was born. We involved ourselves from the start when our baby was only 4 weeks old. Since that time, we receive emails from those we've met through the DS Network always wondering how our daughter is doing. Everyone is very positive and loves to see our daughter.

If this organization had 10 million bucks, it could...

DS Network could provide further educational opportunities to all families. It could also provide the various therapies specific to the early development of each child, including but not limited to, PT, OT, and speech therapy. The potential financial burden to families would be lessened given a well-funded organization.

Ways to make it better...

I have found DS Network to be valuable in their efforts in keeping families informed of events, state budget cuts, and networking.

In my opinion, the biggest challenges facing this organization are...

DS Network relies on donations. An organization as such is always looking for more money to help fund programs for our families.

One thing I'd also say is that...

Early intervention is crucial in the development of each child. We have only had the pleasure of working with one therapist, and yet I look forward to watching my daughter develop and grow to her highest potential. We hope that these early intervention programs are still available to special infants, toddlers, school-age children, and adults for as long as they need them.

When was your last experience with this nonprofit?

2009

Role:  Client Served & We participate in monthly meetings and special activities sponsored by DS Network.