Family Stories

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“Arlo was the first person I met who had Down syndrome. I was a first-time mom, reeling from an emergency C-section and a surprise diagnosis – lost. Whenever I couldn’t be with him in the NICU I was researching all things disability. This is when I discovered early intervention.

Arlo’s EI team was a bright light in a dark time. They taught me how to naturally incorporate therapeutic techniques into his life. Simple things like using a spoon to increase mouth strength, describing pictures in books instead of ‘reading’ them, supporting him on the playground so he used his muscles correctly, walking with a walker and later independently. Most importantly, they supported me. They reminded me to enjoy my baby. They encouraged me to trust my instincts and get second opinions. They were my teachers and in many ways, MY therapists.

Arlo is now a 10-year-old boy who is not just walking but running, swimming, and skiing! He is confident, kind, and silly. He still works hard at everything he does. He continues to talk more and more and therapy will likely always play a part in his life.

Our entire family still uses the techniques his amazing team of therapists taught us nearly a decade ago. That’s the whole point of EI – to teach individuals and families to do for themselves, to have these therapeutic practices become second nature. Like so many things related to disability, all of this ‘special’ stuff is best practices for ALL humans. EI was the best parent coaching I could imagine and it helped tremendously with Arlo’s younger siblings.

EI is still a part of our every day: we’re constantly encouraging Arlo to do for himself, building extra time into transitions, having him order for himself at restaurants, teaching him to pay for things at the farmer’s market, reminding others to ask HIM the questions- not me.

Almost every therapist who has been in Arlo’s circle is still a part of our lives. I think of them almost daily. Forever intertwined, forever grateful, forever touched by one another.” Erin Croyle

“When we started early intervention, we had no idea that the case manager would become such an important guide on our journey. When you have a child with a disability, it can feel overwhelming and parents are bound to make mistakes. We applied for a Medicaid waiver and got denied the first and second times. I was ready to give up, but our case manager, Danielle, talked me into appealing the denial. I was ridiculously stressed out by the process, but she kept encouraging me to move forward. She was willing to answer all of my questions and I had a lot. With her guidance we were successful in our appeal and that has been life changing for us. Danielle could see our path ahead more clearly than we could and she knew how important it was to not give up. I will be forever grateful to her. Danielle, you are a rock star.

Danielle also guided us through the big transition at age 3. This is when Sophia aged out of early intervention and started going to school. Once again, I freaked out. My child, who uses a walker, will be in school? What? I simply could not wrap my mind around this transition. But I knew services and therapy needed to continue, so again, I leaned on Danielle for support. I would ask, over and over, explain to me how this will work? She had endless patience with me. Danielle, if I could hand out awards, you get the gold star.

The reason I’m mentioning this is because most people might initially think of early intervention just as therapy for their child. It’s actually much more than that. It’s also support and guidance for the parents.” Jill Rose

How it started: “When Benjamin was as young as three months he concentrated deeply on books, tracking pages and responding with joy. Maybe, like many of us, this was his chance to explore. Mobility otherwise was a challenge. Seemingly simple movements proved exhausting and frustrating for Benjamin. At the recommendation of his physician we sought early intervention services. Through EI Benjamin got 2 years of physical therapy, braces for his feet and ankles, and support from the feeding clinic”

How it’s going “Benjamin is nearly 6 years old. He’s hiking, climbing, running, biking, and cleaning his plate with a ravenous appetite. Our EI physical therapists helped Benjamin and us, his parents, build strength and confidence in what he could and would be able to do. Having learned more about monitoring child development we saw similar signs in Benjamin’s younger sister, Iris, and quickly began overlapping EI services for both our children.”

“I wanted to follow up on our early intervention story because I found a video of Sophia with her EI therapist. This video was taken when she was 19 months old and as you can see, even standing up was a major hurdle. Most kids by this age would have been walking for a few months, but for Sophia, walking without a walker will still be a couple years away. I’m also adding photos in the comments of her now, demonstrating how far she has come from this moment in the video.” Jill Rose

“When our daughter was born, no one, not even our doctor, had a clue she had Down syndrome. I held her, looked at her and knew. I immediately asked our doctor; he examined her palm and said that because the lines looked a certain way, that meant that she didn’t have DS. But she had very, very low muscle tone and couldn’t latch on. While the lactation nurse knew, she kept it to herself until the last day when I was crying – then she confessed that she thought I was correct. Yet she didn’t tell the hospital staff or our doctor. There was so much denial, we were sent home without any information. Eventually our doctor ordered a genetics test. When it was confirmed she did have DS, he suggested we see a specialist since she was only the second patient he had ever treated with DS. It took months and months to get an appointment at that clinic. So much time passed and I had no idea what to research. I didn’t know what to plug into google. Those 2 simple words …

One day a random encounter with a NICU nurse at a potluck changed everything. She casually asked, ‘have you gotten her into early intervention yet?’ ‘So that’s what it’s called?’ I asked, so elated to now finally have the words. If you don’t know what to google, you don’t have a jumping off point, period. She had a phone number and website. She was my angel. I started the process of getting Sophia into early intervention the next day.

I was amazed how behind we were when therapy started. She didn’t walk on her own, without a walker, until she was four years old. Every single step in the right direction, including providing us with the walker, I credit to the early intervention team. The speech therapist helped us with feeding. It’s a connection so many of us don’t make, how intertwined feeding and speech are.

Our daughter just turned 11 and she is doing great. She is walking, talking, even jumping and running. She is our joy. We will forever be grateful for our experience with EI.” Jill Rose