For families new to the Early Intervention program who may feel uncertain or overwhelmed because they’ve just learned their child has a delay, how do you help them through those emotions?
Kelsee: It can be a little overwhelming for them because it’s all just so brand new. The evaluation is when they hear for the first time, or perhaps hear more concretely, that their child is delayed.
Christina: They start with a lot of raw emotion. They’ve realized that this dream that they have for their baby may not end up being what’s going to happen. But we’re there to take that raw emotion and vulnerability and help them see what’s possible, what can be. That’s what inspires me every day!
Betty: For these families, it’s a time of a LOT of ‘firsts.’ It’s their first impression of what physical therapy is, or what speech therapy is.
Sara: A lot of adults don’t know what therapy looks like for kids, especially if they’ve had therapy themselves! So once they realize that therapy is play – because that’s a child’s job and their role in society – they see how fun it is and understand it.
Tina: Some families are initially nervous about us coming to their house because that’s such a private place for them. But once we get out there, they see their child achieving and being happy and successful.
Larissa: I think families are often surprised when they discover that we’re caring for their family overall versus just coming in, doing therapy, and leaving. We help them with so many other routine challenges like navigating the grocery store with a child who has major sensory issues. We go with them to get their kids’ hair cut. We spend a lot of times with them in cars, trying to get their children past that sensory overload.
Karen: Parents often feel relieved from the expectation that their kid has to behave for an hour while we’re there. We are there to support them through hard times and we want to see those hard times. We’re not there for picture-perfect times.
What does early intervention look like when it’s taking place inside someone’s home?
Laura: There is something about going into a family’s home – I always think of it as a kind of sacred place. You get to join their journey, in their home. You share life on a different level.
Tina: In the home, you really get to see the dynamics of the family. Sometimes those dynamics are really awesome and funny, and sometimes they’re really serious, but it gives you a better plan for treatment.
Betty: There’s also the practical. When you’re working in someone’s home, you use what’s there. It’s often tough outside the home, where you’re often guessing at what might be available to the family – do they have a coffee table, for example, where the child can practice standing? In the home, you can say, ‘Let’s grab that blanket!’ or “Let’s use this stool!’ and it’s really clear.
Christina: “Families always have so much more available to them than they realize. They don’t have to have all these fancy, expensive toys. You can do so much with pine cones outside, or empty tissue boxes. If that’s what the family has access to, then that’s what we use for therapy. That’s what works.
Kim: I love the spontaneity that arises from home visits in EI. You can plan a visit as much as you want, but it’s not going to go the way you expected! During one of my sessions today, there was a cardboard box around and we ended up playing with that half the time. I love the creativity and problem solving that happens, both on my end but with the family, too, as we’re thinking of ideas.
What are some of the best parts about working in EI?
Erica: Knowing when I’m no longer needed! I think that’s a good thing – it means they feel secure in what they’re doing now. They feel competent navigating future environments. I once treated a family with a child who was diagnosed as being on the [autism] spectrum, and we’d been working a lot on engagement and interacting with family members. At one point, the child took my hand, led me outside, and closed the door so that he could play a game with his mom and dad [without me being there]! He was ready to do it on his own.
Candy: What excites me is when you’re working with a family and what you’ve suggested works in their lives.
Karen: Or they come up with their own ideas and you think – wow, what a great idea! We learn a lot from them. Our families are our best teachers.
Katelyn: One of my mentors (at CTC) once told me, “Just be there to support the mom and love her baby with her.” And an important part of that is pointing out what some people might consider tiny gains, but ones that are so significant and so meaningful to this parent. Their faces light up – that’s one of the biggest rewards.
Tracy: One of my families calls those gains ‘inch stones’ instead of milestones. We celebrate every inch stone with this child!
What are a few of your favorite EI stories?
Shannon: I was seeing a little boy up until recently who’d had a heart transplant when he was less than a year old. He’d almost died. He was in the hospital for 7 months and had been getting weaker, and finally the family was saying goodbye – and then a heart became available, and the transplant was successful. I saw him for two years but it wasn’t until just a few months ago that his mom just started talking about what it had REALLY been like – not just the medical diagnoses and procedures, but what it was REALLY like – and we both just sat there crying.
Kate: I worked with him too – what a miracle boy and what a miracle family. When I first started working with him, he’d get a sick a lot and they had to cancel appointments. He was in and out of the hospital for everything – a cold would send him to the hospital for 3 or 4 days, and when he’d get home he wasn’t able to eat. He was just working on feeling better. But the last six months have been amazing for him! He has been feeling really good. He’s gone from saying nothing to putting together two- and three-word phrases. He didn’t even walk until he was over the age of 2. And on my last visit, we were outside and he was walking up and down a hill and wanted to keep doing it all over again. I just said to the family, “I don’t know how you did this, but you are really strong, strong people.”
Alyssa: I had a mom recently whose child had a seizure when she was 10 months old. She was having delays as a result, so she came into EI and I started seeing her for speech. The mom told me later she had no idea what to expect. She said, “I didn’t know if you were going to judge our house, or tell me it was too messy. Thank you for helping me with my baby – this was a lot different than I thought it would be!” She told me I’d become more like a friend.
Stephanie: This is a tough story but I became close with one mom, Heidi, whose daughter, Kira, passed away from cancer when she was 2. I was there the day she died in the hospital. They asked me to speak at her funeral. Afterwards, I’d go with Heidi on Sundays to yoga and then to lunch afterwards and I just thought – you’re the strongest woman I know, to be continuing on with life after watching your baby suffer. So yes, I’ve had friendships that are really rich and go deep. This Friday, her family is finalizing their adoption of a baby girl with Down syndrome. Shannon (a FRC at CTC) and I are among only a handful of people invited to the adoption ceremony. We’d helped the family navigate the adoption process – we had a momma here who’d gone through all that, who shared all kinds of information. But throughout this journey of adopting this baby girl, Heidi went through all kinds of emotions. I told her to ask Kira what she’d think about all this and that night, she sent me a photo of a sunset and she said, “I asked her!” And now Marge (an OT at CTC) is working with the new baby they adopted.
Kate: As time goes by and the families move on, I still don’t forget them. I may forget names, but not faces or those journeys.
Stephanie: My families always surprise me in the most amazing ways, whether it’s how they interact with their children or who they are in their heart when their guard’s down. That keeps me fresh.