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A Parent’s Early Days in EI

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 8373179777_9d10c3bd3fintervention.

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?

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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 ecroyle@thearcofva.org

Erin, her husband Daniel Sheire, Arlo, Emil, and their dog live in Northern Virginia.

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33 Comments to “A Parent’s Early Days in EI”

  1. Erin….thank you for such a wonderful, transparent blog!. In response to the question, I think we try to get families through those early days using many of the things that you suggest but mostly we do it by trying to focus on what the family is telling us is of the greatest priority. It is a tricky balance to listen and follow a family’s lead while at the same time provide guidance.

    • Thank you John. It’s such a delicate balance, isn’t it? With Arlo being our first child, I had no idea what our priorities should be. Thankfully his team was able to guide us in the right direction. You kind of walk a tight rope between coaching and hand holding, don’t you think?

  2. Thank you, Erin, for sharing your family’s story with all of us. It would be fabulous to have more parent stories. My grad students LOVE this blog and the opportunity to hear from “real people.”

    • Thank you Cori! I can’t wait to write more! So many ideas, so little time. 🙂

  3. Thank you Erin for sharing your story!! The family voice is so valuable in educating others about a family’s perspective and journey through early intervention and beyond. Telling your story helps to support and guide early interventionists – giving direct insight and experience through the eyes of the family – building the family-professional partnership! Thank you.

  4. You are more than welcome. It’s not always easy drudging up the hard stuff. But knowing it will help others makes it worth it.

  5. Erin,

    Thanks for your thoughts about your experience with Early Intervention. I can’t stress enough how important it is for interventionists to listen and hear where the family is on this unplanned journey.

    Families are in different places at different times in meeting the needs of their child. Some are pleased when they find out their child is eligible so they can get support and others are saddened that their child needs extra support.

    The partnership between interventionists and families is vitally critical.

    • You are so right Allan. I really admire interventionists who are able to read all of these different families they’re seeing. Each one of us is so different. And parents change as their child gets older. It’s such an evolving relationship. And interventionists are often filling many different roles – confidant, therapist, advocate.

  6. Hi Erin,
    I really enjoyed reading your article. Your emotions seem real and raw, which is the way most parents feel for quite some time after any type of diagnosis that they know will impact their baby for years to come. I am a pediatric physical therapist, and I try to listen to and follow the parents cues as to what information they want to hear while keeping in mind what info they NEED to hear. Your point with regard to focusing on what a baby can do is well taken. I often tell parents to let the baby show me what they CAN do and I will take that and build on it.

  7. Thank you for writing this article. As an early interventionist, I am constantly thinking about the family and how to word things and making sure that what I’m saying is helpful. But sometimes I feel like I am overwhelming the family- so right about all the paperwork! I like how you put in what they did right instead of what they did wrong. There are some days where I just let the family talk and we don’t even work on goals. I feel those are important days, as the family needs to talk, but I feel like I’m not helping like I should, according to the paperwork. I’m excited to read more from you.

  8. I loved reading this article because of how real it felt. I would try to help the families by eliminating as much jargon as possible to help them know what was going on in a way they understood because this is already a hard time for them and confusing them more doesn’t help. One of my professors also told us that when she had new students and was explaining their IFSP to the parents, she would make a front page with a brief descriptions of need to know things so they could have an idea about what was in it.

    • Yes, love that idea – of a kind of “cheat sheet” for the IFSP. There is SO much for a new family to take in during those first 45 days after referral. Anything we can do to make the process easier to digest and easier for the family to participate in is so helpful.

  9. I think the most important thing first off is to tell them it’s okay to feel overwhelmed. It’s normal to have a flurry of questions and yet not know where to start. I’d assure them that they have a safe place with me and that we’ll take it one step at a time.
    I think it’s important to relay that they will adjust, any new parent has to learn and adjust to their new baby and their baby is just the same in that. We’re both going to get to know their son and give him the nurturing care he needs. I’d encourage them and give them props where they are doing great.

    • Yes, sharing in that early journey and providing a safe, reassuring space for the parent can be such an important role for EI practitioners!

  10. I was 5 years old when my brother was born. My mom had been in a car wreck when she was 8 1/2 months pregnant with Joey. I watched them go through surgeries and later my Mom found help with my brother. My Mom and Joey almost died and they are both still alive 47 years later. I am so proud of both of them. My Mom was, and still is, his champion. I hope to be able to support families like yours in a professional sense like your team did. Thank you for your input on what they did right.

    • Thank you for sharing your story, James. It sounds like what you experienced really helped shape you with a perspective that will be so valuable as you work with families!

  11. I would let parents know that life is a process, and not only are our children growing and changing, but our own mentalities are as well. Be kind to yourself, as this kindness will transfer to our children.

  12. This point of transition is not an easy one for any family. Sometimes all the information and paperwork that comes with the initial part of early intervention can be overwhelming. I think it is important to try to explain everything they need to know in a way that does not overwhelm them but that at the same time we make sure that they actually are processing the information. Extra materials could be use to help explain things like the IFSP in creative ways that might make it easier for the parents to understand.

    • I agree, Maria, that being sensitive to not overwhelming families is important. What kinds of extra materials are you thinking of?

  13. As said in the blog post, a lot of the assessments and diagnoses made for these children are a blur and are unclear, which can definitely leave the parents feeling more concerned and overwhelmed than when they first realized the child needs to be assessed. Time, unconditional support, and confident and positive guidance by the ECI can help the parents feel more sure about the child’s future and their progress in life. This was a really good read!

    • Time and unconditional support, and confident and positive guidance really helps the team remain strength-based when supporting families in the process. We are all in the early intervention field because we are passionate about the families we serve. I have heard numerous colleagues hurting with the families as they go through the process. Positive guidance is essential and comes naturally when we all care so much about our families.

  14. This article touches on such an important aspect of a diagnosis… the emotional side. Before children are born, parents spend nine months imagining their child, and the perfect life they will live together. To find out that your child has special needs takes time to cope. EI service providers can not only provide valuable services for the child, but can also provide necessary emotional support for parents still coming to terms with their child’s diagnosis.

  15. In order to help families get through the early days I would make sure to just listen to the family and really focus on what they want and where they are at. If the family needs to grieve more I would sit back and support them, but if the family seems to want to get started or needs a push, I would be right there starting the process of intervention.

    • Listening and reading the family’s nonverbal cues is a true skill. I think we also have to be aware of our own stress levels because we may have our own agenda such as completing paperwork that can be weighing on our minds as we listen to families. Explaining what we are doing and why we are doing it seems to help leave less unknown variables to the family and gives them the ability to ask questions throughout the process.

  16. I would first see where they are on the grief scale and ask what their concerns are for their child. Then I would ask what their prior physicians have told them. After that, I would then see if there were any miscommunications with any of the physicians, education of the child’s disability, or family members. Listening to these concerns sometimes reveals where their doubts and fears are, and knowing their problems can help build trust with the family as you guide them along their journey with their child. Then I would offer help to the child and family where it is necessary.

    • Great strategy to gauge what the physicians told the family. This helps us see if there is any additional questions or resources. It is always good to remain sensitive to the various emotions a parent may be experiencing knowing how overwhelming the process can be. I love your statement about building trust as we guide the family along their journey. Well said!

  17. If I was an ECI provider, I would focus first on the grief aspect of finding out your child has a developmental delay. Sometimes people dive head first into the service aspect and begin overloading families with information and “first steps” when truly families are still in the grieving stage and are still processing all of the new information about their child and their disability. From there, the family can begin to understand what goals they have for their child and service providers can begin offering suggestions and answer any questions.

  18. I actually have a cousin who was diagnosed with Down syndrome as a baby. My aunt gave me some advice regarding what helped the early days of raising Amanda and what was important, much of which matched this article. She said that during early intervention, it was critical to focus on the abilities depending on her developmental age. She was delayed in developmental in a number of areas, and it was important to identify those areas and create appropriate daily routines to enhance Amanda’s cognitive and physical abilities. She also said that finding a Down syndrome children’s support group helped her in the first few years raising Amanda tremendously. Having people to talk to, to share relatable experiences with, and seek advice from was critical to raising Amanda.

  19. I think all of the topics you pointed out that your EI Providers did for you, hits home. Support is so important for the family, especially in the beginning. Patience is also important, the family needs to accept it all on their own time. In which, this ties in with support, by allowing them time to process it all and still provide the support they need.

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