Finding out your child isn’t developing typically can be inexplicably difficult. Many of us were in a fog when our children first got started in early intervention.
Initial Diagnosis & Finding Early Intervention
The devastation I felt after my son was diagnosed with Down syndrome subsided long ago, but the memories are vivid. Arlo is 3 years old now and our family is very involved in the disability community. When he was born, however, I had no idea what early intervention was. When I wasn’t by his side at the hospital, I was feverishly researching how to help our little boy. Finding services wasn’t easy. We were overseas at the time and did most of our research online; it was like a labyrinth. We moved back when Arlo was two months old and after half a dozen calls finally found our city’s Parent Infant Toddler program.
Our Assessment, IFSP, & the EI System
Our assessment was a blur. I was still reeling from Arlo’s diagnosis. I was hoping they’d tell me he’s special and different and he would just develop “normally.” I clung to that hope for a while. It helped me get through the day. I suppose it’s all part of the stages of grief and acceptance.
Arlo’s EI team was wonderful. But I was like a high-functioning zombie. Much of what they told me just didn’t sink in. Arlo’s team usually saw me at my best – I saved the tears for before and after. It took over a year before I really understood what an IFSP (Individualized Family Service Plan) was. The questions they were asking and the loads of paperwork they were filling out felt like a big time suck.
I just wanted them to help me help my child.
The IFSP goals were helpful and we clung to everything Arlo’s educator told us. I took notes and followed through on every suggestion. But how the system worked – I just didn’t care. I was too overwhelmed with everything else going on in our lives. I was in pain and our family was under extreme stress. We were running from doctor to doctor setting up Arlo’s team of specialists. Many of those doctors, the people we were turning to for answers, needed to be educated on Down syndrome. We were dealing with friends and family who were trying to be supportive but sometimes could be utterly insensitive.
What Our EI Providers Did Right
I was lucky enough to have providers in my life that focused on what was important … helping me get through a rough time, and helping Arlo thrive. Here’s what they did right:
Focus on the necessities. It’s almost like triage. Showing a parent how to help their child is critical. Arlo’s team helped me stay focused on his immediate needs. The more I understood, the more they introduced.
Guide the families with the goals. Many parents will have no idea what goals they should be focusing on. They need their hand held.
Focus on developmental age. There are constant reminders of how far behind our children may be. Other kids at the playground, other parents comparing, growth chart talk. These things can be painful and discouraging. It’s good to remind parents to forget about a child’s age and typical milestones and to focus on a child’s developmental age.
Embrace delays and challenges. Many parents are dealing with family, friends, even doctors telling them their child seems fine; when deep down, they know something is wrong. Often EI providers are the first to validate their concerns. While this can be difficult – it is a welcome change for many families. Finally someone else is acknowledging something is not quite right and now they can move forward.
Sometimes we just need to talk. Children are of course the focus. But venting helps. We need to talk to someone who understands the frustration when a grandparent or spouse won’t follow through with techniques. We need to talk about the doctor who dismissed our concerns. We need to complain about how exhausting all of these appointments can be. Sometimes we just need to cry. Of course, if we start going on about a friend’s wedding, feel free to change the subject back to the child.
We need a pat on the back. I often find myself drowning in guilt. Guilty I’m not doing enough therapies. Guilty that I’m not doing enough fun stuff. Guilty I’m not walking the dog. Guilty I’m drinking too much coffee. Guilty about everything. Just letting a parent know they’re doing a good job can mean the world to them. In fact – Arlo’s educator often told me to just take a day off once in a while. She did such an amazing job coaching us she knew he’d never really have a day off. But it did take away a bit of guilt on my part.
Arlo’s EI team provided a nurturing cocoon for us during a very challenging time. Arlo is doing amazing in preschool and our family is in a happy place. We still face difficulties, but now I have an amazing network of friends (many of them from Arlo’s EI days) that I can lean on.
So how do you help families get through those early days in EI and focus on what’s important?
Erin Croyle is a journalist who has worked for National Geographic and Al Jazeera English in Washington DC and Kuala Lumpur, Malaysia. She is also a mother to two young boys, Arlo and Emil. Her son Arlo was born in 2010 and he turned out to be a game changer. Arlo’s Down syndrome diagnosis prompted Erin to become an advocate. Through her advocacy efforts she became involved with The Arc of Virginia where she now works as an Early Intervention Support Specialist. Her job is to help families new to EI navigate the system. You can find more here: http://new-path.thearcofva.org/ You can also email Erin at firstname.lastname@example.org
Erin, her husband Daniel Sheire, Arlo, Emil, and their dog live in Northern Virginia.