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Presenter Bio
Robyn DiPietro-Wells is married with four children ranging in age from 3 to 10 years old. She lives in East Central Illinois and spent over a decade as an active duty military spouse. Her two oldest children were each diagnosed with disabilities as young children. Over the course of their lives she has dedicated a great deal of her time towards advocating on their behalf to ensure they receive the best care and services available. She is passionate about encouraging and empowering parents to be advocates for their children, educating individuals on the unique needs of military families and children, and ensuring that all military families and professionals know of the resources and opportunities available to them and their children whether they are typical developing or experiencing developmental delays.
The Quote
(About Lily’s diagnosis
) In the back of my head, like every mother, I was going, “oh my, what did I do”
This child (Ben) has the worst case of ADHD I have ever seen… It (the medication) quieted all of the noise in his head and revealed this gem of a child.
I was the sole caregiver and the manager… he (my husband) just really wasn’t there. I kept him briefed, if you will, as to what was happening…. The day to day managing of it, that was left for me solely.
So, for me, this has been kind of a benchmark of my entire adult life. I just shut it off. I just shut off the feeling, I shut off the emotion, I build a wall, and I do what needs to be done…
I am nothing if not resourceful
The most helpful thing that I found about EI was that it was very family centered… It (EI) gave me some power and some sense of contribution.
Noticeable Changes
What I will say and what I have noticed in the last couple of years… the process that I’ve kind of gone through. From diagnosis to 5, I noticed that I hurt a lot. And, I don’t like to feel. That was really challenging. Every trip to the playground was painful… it was killing me; she couldn’t keep up… After about age five, that development slows down. I started noticing that there were longer breaks in between these painful reminders. There are a lot of 5 year olds who can’t kick a soccer ball to save their life. There were much fewer reminders.
Now after about 10 years, I see the fruit of all of the energy I’ve put into advocating.
My son changed me a lot… there aren’t even words to describe to you how difficult a process (adoption of an older child) that was; the journey once he got home… here is this child, who, at first, I’m like, “I have been tasked with taking care of you and I’m not feeling it yet” and then this feeling of “oh my word, I would step in front of a bus for you. You are a gem to me and everything about you is amazing. And this depth of love that I have for you”…
I think the children changed me, perhaps for the better.... They made me realize still how tenacious I am. My mother will often say that now she understands why I was so much the way I was… that all that fight in me as a child serves a great purpose.
Unforeseen Barriers
The way I processed their diagnoses emotionally was very different. Ben came to me like this; I didn’t do that. But there wasn’t this burden of guilt… despite the fact that I had been told, “you didn’t do this, you didn’t do this”, it still felt like it was on my watch (with Lily). This was in my body. How did this happen?
My husband and I hurt in very different ways… he’s very much an internal processor; I’m very much an external processor…. We just processed it in two very different spaces
What I’ve discovered is that the first few years of a new diagnosis, I have to fight like crazy to get Tricare to cover it. They don’t really want to. Or maybe it’s that they are unfamiliar with it...it’s required a great deal of time and effort for me to advocate.
Robyn's Advice
What I would say to the professionals who work with families... I want professionals to know that many parents who have a child with a disability are coming to you, looking at you as the expert… remember that some of what these families need is permission to fight and advocate for themselves and their children.
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As service providers, what have you found most helpful in working with families with children who have special needs?
Interview Links
- Robyn's Bio at MFLN Family Development Early Intervention
- Early Intervention Matters: A Parent's Perspective at MFLN Family Development
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