{"id":1633,"date":"2014-01-28T17:53:50","date_gmt":"2014-01-28T17:53:50","guid":{"rendered":"http:\/\/veipd.org\/earlyintervention\/?p=1633"},"modified":"2020-11-05T19:55:47","modified_gmt":"2020-11-05T19:55:47","slug":"a-parents-early-days-in-ei-2","status":"publish","type":"post","link":"https:\/\/www.veipd.org\/earlyintervention\/2014\/01\/28\/a-parents-early-days-in-ei-2\/","title":{"rendered":"A Parent’s Early Days in EI"},"content":{"rendered":"

Finding out your child isn\u2019t developing typically can be inexplicably difficult.\u00a0 Many of us were in a fog when our children first got started in early \"Toddlerintervention.<\/p>\n

Initial Diagnosis & Finding Early Intervention<\/h2>\n

The devastation I felt after my son was diagnosed with Down syndrome subsided long ago, but the memories are vivid. \u00a0Arlo is 3 years old now and our family is very involved in the disability community.\u00a0 When he was born, however, I had no idea what early intervention was. \u00a0When I wasn\u2019t by his side at the hospital, I was feverishly researching how to help our little boy.\u00a0 Finding services wasn\u2019t easy.\u00a0 We were overseas at the time and did most of our research online; it was like a labyrinth.\u00a0 We moved back when Arlo was two months old and after half a dozen calls finally found our city\u2019s Parent Infant Toddler program.<\/p>\n

Our Assessment, IFSP, & the EI System<\/h2>\n

Our assessment was a blur.\u00a0 I was still reeling from Arlo\u2019s diagnosis.\u00a0 I was hoping they\u2019d tell me he\u2019s special and different and he would just develop \u201cnormally.\u201d\u00a0 I clung to that hope for a while.\u00a0 It helped me get through the day.\u00a0 I suppose it\u2019s all part of the stages of grief and acceptance.<\/p>\n

Arlo\u2019s EI team was wonderful.\u00a0 But I was like a high-functioning zombie.\u00a0 Much of what they told me just didn\u2019t sink in.\u00a0 Arlo\u2019s team usually saw me at my best \u2013 I saved the tears for before and after.\u00a0 It took over a year before I really understood what an IFSP (Individualized Family Service Plan) was.\u00a0 The questions they were asking and the loads of paperwork they were filling out felt like a big time suck.<\/p>\n

I just wanted them to help me help my child.<\/p>\n

The IFSP goals were helpful and we clung to everything Arlo\u2019s educator told us.\u00a0 I took notes and followed through on every suggestion.\u00a0 But how the system worked \u2013 I just didn\u2019t care.\u00a0 I was too overwhelmed with everything else going on in our lives.\u00a0 I was in pain and our family was under extreme stress.\u00a0\u00a0 We were running from doctor to doctor setting up Arlo\u2019s team of specialists.\u00a0 Many of those doctors, the people we were turning to for answers, needed to be educated on Down syndrome.\u00a0\u00a0 We were dealing with friends and family who were trying to be supportive but sometimes could be utterly insensitive.<\/p>\n

What Our EI Providers Did Right<\/h2>\n

I was lucky enough to have providers in my life that focused on what was important \u2026 helping me get through a rough time, and helping Arlo thrive.\u00a0 Here\u2019s what they did right:<\/p>\n

Focus on the necessities.<\/strong>\u00a0 It\u2019s almost like triage. \u00a0Showing a parent how to help their child is critical.\u00a0 Arlo\u2019s team helped me stay focused on his immediate needs.\u00a0 The more I understood, the more they introduced.<\/p>\n

Guide the families with the goals.\u00a0<\/strong> Many parents will have no idea what goals they should be focusing on.\u00a0 They need their hand held<\/a>.<\/p>\n

Focus on developmental age.\u00a0<\/strong> There are constant reminders of how far behind our children may be.\u00a0 Other kids at the playground, other parents comparing, growth chart talk.\u00a0 These things can be painful and discouraging.\u00a0 It\u2019s good to remind parents to forget about a child\u2019s age and typical milestones and to focus on a child\u2019s developmental age.<\/p>\n

Embrace delays and challenges.<\/strong>\u00a0 Many parents are dealing with family, friends, even doctors telling them their child seems fine; when deep down, they know something is wrong.\u00a0 Often EI providers are the first to validate their concerns.\u00a0 While this can be difficult \u2013 it is a welcome change for many families.\u00a0 Finally someone else is acknowledging something is not quite right and now they can move forward.<\/p>\n

Sometimes we just need to talk.\u00a0<\/strong> Children are of course the focus.\u00a0 But venting helps.\u00a0 We need to talk to someone who understands the frustration when a grandparent or spouse won\u2019t follow through with techniques.\u00a0 We need to talk about the doctor who dismissed our concerns.\u00a0 We need to complain about how exhausting all of these appointments can be.\u00a0 Sometimes we just need to cry.\u00a0 \u00a0\u00a0Of course, if we start going on about a friend’s wedding, feel free to change the subject back to the child.<\/p>\n

We need a pat on the back.<\/strong> \u00a0I often find myself drowning in guilt.\u00a0 Guilty I\u2019m not doing enough therapies.\u00a0 Guilty that I\u2019m not doing enough fun stuff.\u00a0 Guilty I\u2019m not walking the dog.\u00a0 Guilty I\u2019m drinking too much coffee.\u00a0 Guilty about everything.\u00a0 Just letting a parent know they\u2019re doing a good job can mean the world to them.\u00a0 In fact \u2013 Arlo\u2019s educator often told me to just take a day off once in a while.\u00a0 She did such an amazing job coaching us she knew he\u2019d never really have a day off.\u00a0 But it did take away a bit of guilt on my part.<\/p>\n

Arlo\u2019s 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\u2019s EI days) that I can lean on.<\/p>\n

So how do you help families get through those early days in EI and focus on what\u2019s important?<\/strong><\/p>\n

\n

\"FamilyErin 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\/<\/a> You can also email Erin at ecroyle@thearcofva.org<\/a><\/p>\n

Erin, her husband Daniel Sheire, Arlo, Emil, and their dog live in Northern Virginia.<\/p>\n","protected":false},"excerpt":{"rendered":"

Finding out your child isn\u2019t developing typically can be inexplicably difficult.\u00a0 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. \u00a0Arlo is […]<\/p>\n","protected":false},"author":215,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_s2mail":"yes","footnotes":""},"categories":[139,10,14],"tags":[37,46,48,50,58,59,64,68,86,87,112,115,125],"class_list":["post-1633","post","type-post","status-publish","format-standard","hentry","category-all","category-engaging-collaborating-with-families","category-practical-strategies-for-intervention","tag-collaboration","tag-development","tag-early-childhood","tag-early-intervention","tag-families","tag-family-centered-practices","tag-ifsp","tag-infants","tag-parent-professional-partnership","tag-parents","tag-strategies","tag-teamwork","tag-toddlers","clearfix"],"yoast_head":"\nA Parent's Early Days in EI - Early Intervention Strategies for Success<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.veipd.org\/earlyintervention\/2014\/01\/28\/a-parents-early-days-in-ei-2\/\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Erin Croyle\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.veipd.org\\\/earlyintervention\\\/2014\\\/01\\\/28\\\/a-parents-early-days-in-ei-2\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.veipd.org\\\/earlyintervention\\\/2014\\\/01\\\/28\\\/a-parents-early-days-in-ei-2\\\/\"},\"author\":{\"name\":\"Erin Croyle\",\"@id\":\"https:\\\/\\\/www.veipd.org\\\/earlyintervention\\\/#\\\/schema\\\/person\\\/bbe6abdb87c325fd0cc3909e2c643f50\"},\"headline\":\"A Parent’s Early Days in EI\",\"datePublished\":\"2014-01-28T17:53:50+00:00\",\"dateModified\":\"2020-11-05T19:55:47+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.veipd.org\\\/earlyintervention\\\/2014\\\/01\\\/28\\\/a-parents-early-days-in-ei-2\\\/\"},\"wordCount\":1042,\"commentCount\":77,\"publisher\":{\"@id\":\"https:\\\/\\\/www.veipd.org\\\/earlyintervention\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/www.veipd.org\\\/earlyintervention\\\/2014\\\/01\\\/28\\\/a-parents-early-days-in-ei-2\\\/#primaryimage\"},\"thumbnailUrl\":\"http:\\\/\\\/veipd.org\\\/earlyintervention\\\/wp-content\\\/uploads\\\/2014\\\/01\\\/8373179777_9d10c3bd3f-300x224.jpg\",\"keywords\":[\"collaboration\",\"development\",\"early childhood\",\"early intervention\",\"families\",\"family-centered practices\",\"IFSP\",\"infants\",\"parent-professional partnership\",\"parents\",\"strategies\",\"teamwork\",\"toddlers\"],\"articleSection\":[\"All\",\"Engaging Families\",\"Practical Strategies\"],\"inLanguage\":\"en\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/www.veipd.org\\\/earlyintervention\\\/2014\\\/01\\\/28\\\/a-parents-early-days-in-ei-2\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.veipd.org\\\/earlyintervention\\\/2014\\\/01\\\/28\\\/a-parents-early-days-in-ei-2\\\/\",\"url\":\"https:\\\/\\\/www.veipd.org\\\/earlyintervention\\\/2014\\\/01\\\/28\\\/a-parents-early-days-in-ei-2\\\/\",\"name\":\"A Parent's Early Days in EI - 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