In Road Map to Holland, it was my meeting with Robby (p. 166) and his mom that finally prompted me to call the CDC, and begin the process of starting services. Why do you suppose I listened to Robby's mom, more than anything else? What does this tell us about the value of community?

And an alternate question: is there a "right" time to begin services? Is there a right time for starting therapies?

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Jennifer Graf Groneberg

Who better to take information from than one who has been there and done that. The system(s) are so undaunting for the whole unknown factor. Where do you begin, when do you start, where do you go, who is the best provider, how do you work the system. If you can get that from another person navigating the system, the better you are instead of 'reinveting the wheel' of navigation.

This is what we ended up doing too. I went to our local Ds Assocations New Parent's meeting and there I asked 50 million questions to other mothers on how to navigate, where to go and to whom to ask for.

As for starting therapies, we started early. Our main thought was... We want to be proactive and not reactive.

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Eli
Mom to Abby (DS 10/21/03), James Thomas (01/31/06), Katie (08/12/08.)

The main reason I started this site was to create a community. We learn from each other but there is more than just that. We accept more from the person who has been there. This doesn't mean that the expert doesn't have a lot to offer. Even though the therapist may not have a child with Ds, they have treated a lot of children. But there is something special about the advice from the person who has lived through the experience.

As to when to start therapy? ASAP. We started Mikey within 6 weeks.

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Tom

Dad to Beth (17) and Mikey (13 - Ds and PDD-NOS)
My Blog - Random Thinking
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Kennedy didnt start therapies until very late considering we did not get the diagnosis until she was 6 months old..the heart surgery wasn't for another 2 months so I got the ball rolling while awaiting surgery but she disnt start until she was nearly 9 months old......we waited until 2 weeks after surgery to make sure she healed okay!

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Beth Mom to Cameron 2/26/2000, Kendall 6/25/2002 and My Lovely Kennedy 9/10/2003(DS)

It's something I truly regret: I wish we'd begun everything sooner. I didn't know any better, but now I do, and I wish I could change it.

Thankfully, Avery seems to be doing fine, despite my ineptitude. I'm sure I'll make a whole host of other mistakes--but seeking/finding help for him/us won't be one of them, anymore!

xo

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Jennifer Graf Groneberg

I want to echo what's already been said, but take it one step further for me and that is that I am more willing to take advice from someone with a similar parenting style or philosophy about how to best raise Lucas. We started Lucas on oral/motor and physical therapy at two months, and added OT when he was one...the earlier the better, as long as the child isn't being overwhelmed.

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Sandy, momma to Lucas "the bean" (10/15/06)

This is one of the areas that the book raises that I am particularly interested in. There is a step in the 'process' of special needs that involves helping others/sharing knowledge. The community that comes with a disability can't be under emphasised. It is really important - these 'veterans' help us realise the significance of the 'therapy treadmill' that some of us find ourselves on so very early in our parenting journey. Jen's book highlights the significance of this for parents - it is a grad form of parenting that is daunting to say the least!

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Mum to Hannah (ds) and Kit 15/10 /04