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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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78 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.

  20. I really enjoyed this post! I love how it really illustrated the struggles that parents go through and that it is so very important to make sure the family’s needs are met as well. Parenting is hard and I think this really emphasized the need to be supported. I think the ECI provider should make sure to continue to be aware of the emotional state the family is in because it will most likely change throughout the ECI provider’s services. The family is going to have a lot of emotional struggles so I think it is important to constantly find where the parents are emotionally.

  21. I agree with that IFSP and ECI services can really get the back of the families. The “high-functioning zombie” analogy is really a good point. The service providers need to meet the family at where they are, provide emotional support, allow them to grief, and when they are finally ready to carry on life, connect them with other families who shares similar experience.

  22. Parenting is difficult, especially when the child needs EI. At challenging times like this, it is important to empathize with the parents, identify delays and challenges that the child has, and set up goals to improve the child’s outcomes in a timely manner.

    • True, and hopefully we can help families manage and maybe even mitigate some of those challenges by being responsive, caring, and making sure intervention helps them address what’s really important to them in those moments. Thanks for joining the converation!

  23. I will help families get through the early days of EI by guiding them every step of the way and informing them of all that I possibly can. I will also make sure to let the parents know that they are doing everything right. As long as they are getting proper care and striving for more independence and a happier life for their child, they are doing everything right and should be applauded.

    • Thanks Morgan. Being a guide and support for the family is so important, initially and as you get to know them. I really do believe that families are doing the best they can, even when they don’t feel like they are doing everything right or they are unsure. Emphasizing the positives and being careful to avoid judgment while helping the family build on what they are already doing are great strategies to start with.

  24. Thank you for sharing this!! I think empathy and patience are very important during this time! I would support these families by allowing them time to grieve, providing emotional support and focusing on the positives. I would make sure I am constantly checking in on the emotional state of the entire family.

    • Yes, checking in about emotionals is so important, not only during those early days but throughout the EI process. So much is happening, the child is growing, and priorities and routines area changing, and all of these affect the parents and the whole family. Thanks Sophia!

  25. Thank you for sharing, I truly enjoyed reading your post! All of what your EI providers did were really awesome ways to focus on what’s actually important for a child and their family. I think it’s crucial to really prioritize the family and their needs. This may be through making sure they know and have the appropriate information/resources to succeed and meet their child’s needs, making sure to give concise information so that families actually know and understand the process, and most importantly making sure that the family knows that you’re there to support them in their everyday lives. As stated, focusing on a child’s developmental age is crucial, especially because every child and their needs are unique!

  26. As a provider it is important to keep the family in a positive mindset but also allow them to grief or be sad if they need to. They need to consistently be reminded of the ending outcomes and what they are wanting to accomplish. Additionally, they need to be allowed to let their sadness out when they need, when something doesn’t go the way they wanted it too so that the negative thoughts and energy can leave their minds.

    • Thanks Alba. Your comment is a great reminder to meet families where they are. Being emotionally supportive also means not judging family thoughts and feelings as good or back – they just are. I think some of the best relationships are built on this acceptance.

  27. I appreciate and thank you for sharing your person story. As you mentioned above, the emotional aspect of getting families through this is important! Emotional well-being is important and contributes to how one lives their life. No matter what one person is going through they should be able to get through it. Let these emotions flow by and use the support of others around you in your time of vulnerability. In your case, this was part of how it helped you moved past your guilt and other emotions. I find this very moving and I am happy that your providers did this for you.

    • Thanks Nathan. I agree that Erin did such a nice job of conveying the emotional impact of this experience. So much is going on that it can be easy to overlook the powerful emotions that are happening. Early interventionists can provide a soft place to land as the parent experiences the ups and downs of these early days.

  28. Thank you for sharing your experience! I think its crucial to communicate experiences like these as we are able to empathize and start a conversation. I would agree with how adequately these EI providers assisted your transition. I believe being supportive and non-judgmental is critical to the success of any life-changing transition. At the end of the day the child and well being of their supportive system is what matters most. Thus, continuing an environment full of encouragement and support is how I would help families through their transition.

    • Yes, great points Kelsea. What this support looks like will vary from family to family, but taking a gentle, nonjudgmental approach “full of encouragement” as you said is a great approach.

  29. I really enjoyed reading this post, especially seeing that Erin was provided with a lot of helpful support. I think something that’s really important to help families get through those early days of EI and focus on what’s important is just allowing the family to process what’s going on, along with providing them with lots of emotional support. Things like this can be really emotionally demanding for a parent, so allowing them time to vent about their worries or concerns is super important, especially considering that ECI focuses on the parent-child relationship. It’s imperative that the parent gets the support they need so they can fully give their child the help they need. A parent can’t help their child if they have their own issues going on. This is why support and resources for the parent is just as necessary!

    • I’m so glad you mentioned the parent-child relationship, Kylie! Yes, that is the focus of EI at the beginning and throughout service delivery.

  30. This was such a great post to read. Thank you very much for sharing it! First and foremost, I would help families get through those early days by being supportive and offering comfort. Further, I would also offer as much information as I can, but making sure not to overwhelm the families during this process. Patience, support, and care are extremely important to focus on. I also believe staying in constant communication with them would also be a great way to help. Offering the families with positive feedback is also something I would do as well!

    • Thanks Rida. What strikes me about your comment is how we need to strive for balance. The balance between providing enough information but not too much will differ for each family. I think we also want to balance our positive feedback with support that allows the family to feel what they feel, even if that itself is not always positive, while acknowledging the challenges with an empathetic heart.

  31. Thank you so much for sharing your story!

    In regard to the question at the end, “So how do you help families get through those early days in EI and focus on what’s important?” I think being there to guide and support with compassion, empathy, and patience is critical during this time, as well as throughout the entire EI process. Parents/caregivers may be in shock or grieving, so providing emotional support and guidance can be really meaningful to these individual’s and useful (e.g., establishing rapport and trust) moving forward. This goes back to what you mentioned about being a person that the family can talk, vent, or even cry to. Also, these individuals may not have other people in their lives who can understand or relate to what they are going through, so the EI provider can be that person and source of support for the entire family. Also, I think being able to provide families with adequate information. As you mentioned, focusing on the immediate needs and then providing information when the family is able to take it in. Information is beneficial, but you don’t want to bombard and overwhelm the family by providing too much at once. Once they have the information they need and are ready to make those steps forward, it is important to help them identify potential goals, prioritizing the needs of the family and provide reassurance in the choices/decisions they make. As you mentioned, it is easy to feel guilty, criticize the things you are doing wrong or the things you think you could do better, so the EI provider giving positive feedback on what they are doing right can really help boost their confidence and provide them with motivation and encouragement going forward.

  32. I really enjoyed this post as well! Like you were saying, to help these families, I think it is really important for the family to understand that the specialists is there for them and is on “their side”. I think by creating that trust and bond between the family and the specialists, the two will be even stronger to fight any challenges that might come across their way. Also, by doing so, I think that the family and specialists will be able to target their goals even more specifically due to their bond. Thank you for this post!

    • Yes, building trust and a strong collaborative relationship is so important! It begins from these earliest contacts and the support we provide.

  33. Your story truly shows the troubles that no one wants to talk about, so thank you for telling your side and showing other parents out there that it’s not all rainbows and that you won’t always get it on the first try. To answer your question, “So how do you help families get through those early days in EI and focus on what’s important?” I think it’s very important to understand the family as whole. It’s a lot of anyone to process and everything happens so fast, so to be there for the whole family and letting them know that whatever emotions they are going through are okay. The child needs attention not only from the EI, but also from their actual family, so being a support (providing education – including support groups and even summer camps for the child whenever they’re older, answering questions, lending a helping hand by guiding the family and the child and their specific needs) for both parties will make their new lives easier, which allows everyone to focus on what’s important.

    • Great point, Ashton! We tend to focus on the child who was referred to the early intervention program but you’re absolutely right, we need to embrace the family as a whole and always consider the child’s development in the context of the family’s well-being.

  34. Hi, Erin! Thank you for sharing your story, I am sure that many people will find comfort in ti.

    In response to your question, I think that building a relationship with your ECI provider can really help get through those early days. From there the ECI provider can better understand your daily stress, your family’s routine and culture, and your priorities. Like you said, in the early days the loads of paperwork can seem infinite. However, I think that if the ECI provider explains why they are necessary and guide the parent/caregiver through every step of the way, this might help ease the load. It is very important to find the intersection between the child’s most important needs and the family’s priorities. Finally, like Arlo’s educator suggested, it’s important to just take a day off once in a while. Parenting is hard, but parents are superheroes! Reminding yourself that you are doing your best and not being so hard on yourself can be a game changer. After all, no one knows your child better than you do and that bond with your child can prove vital for his/her development.

  35. Thank you for sharing your story! I think something you really emphasized with your own experience is the importance of EI staff in supporting the parents emotionally and helping the parents build self-compassion skills. It is really hard to be a parent and easy to be caught up in the way things are not going according to plan. Self-compassion emphasizes examining how you talk to yourself when things are not going to plan and making sure you realize your tone and how the words you say to yourself may be way more harsh than the words you would say to a friend. Parents are people and people have hard days. But part of being able to support your child to the best of your ability is acknowledging that you are doing the best you can and really being supportive of yourself in this process. I think EI staff have tremendous power to help parents shift their inner voice and, in doing so, allow them to really be the best parent they can be.

  36. Thank you so much for your touching story, it allows the raw emotion for those who are going through similar experiences to grow as people as well! To address the question, “So how do you help families get through those early days in EI and focus on what’s important?” I believe supporting the family is so incredibly important, letting them know all of the options they have and the support they have from the ECI community would help so much with what frustrations they are going through mentally. I believe community is so important, and allowing them to meet others who have been through the ECI program and sharing their stories of success to those who are just beginning the journey!

  37. This is a unique perspective. The initial diagnosis and the thoughts of the parents are not publicized.
    One thing to help families get through early days in EI is to offer them a listening ear and ask them questions on how they feel. Building that bond between the parent and the coordinator is critical. A parent needs to feel like they can have a voice and that the providers are adept at what they do. With the bond, they can better provide help for their children. If they feel like they need something more than that, then I would suggest them going to a counselor or seek out support groups. A child’s well-being is just as dependent on their family life (parental treatment, environment, etc) than the services that they get from outside the family.

  38. I really enjoyed this blog and the insight you have!

    In regards to your question, I will always keep the mindset as a reminder for myself and the family that life is full of trials and errors. Therefore, its okay that if some therapies don’t work since therapies should be specialized and individualized to every family. Instead of focusing on successful therapies, rather focus on whether the needs and wants of the family is met.

  39. Everything about this post was wonderful! I think the hardest days, for some people, are definitely the early days and establishing everything they will need for their child. A lot of families have never been through something like this and as the post stated, they will need their hand held in understanding the goals and procedures of EI. While the child is the most important aspect of the intervention, like someone else commented, the family is a major priority too! It can be a scary and unfamiliar time for them and so providing them with as much support as possible is incredibly important. With support, there also needs to be some praise for the family. I know that hearing “you’re doing a great job!” while doing something that I am not familiar with, can help with confidence and ability.

  40. This was a wonderful story thank you for sharing!

    So to answer the question “So how do you help families get through those early days in EI and focus on what’s important?” is alwyas having a connection with the family. I’ve learned that a strong bond with whoever youre dealing with can help better the situation as there is trust. Also you can learn and have someone there to help every step of the way. Also for the child the child needs a lot of help and make sure they know that they are not along. Also just for parents to also remember that it does take time for progress to see and to never give up.

  41. Thank you for sharing this! To answer your question, along with focusing on the child, we need to also focus on the parents. Parents can be provided with real life stories of families that went through a similar situation. This can help them realize that they are not alone and will be able to get through this as well. It is also very important to communicate with the family to ensure they feel comfortable and if anything can be done to increase the comfort and satisfaction.

  42. Thank you for telling your story! In my opinion, it really puts into perspective what the family endures and the struggles it takes to find the right help. As for how I would help families, I would do as you say. It is extremely important to take the time to explain the process to parents and ensure that they understand what is going on. It is their child and all they want to do is help them, but if they aren’t knowledgable about what they want for their child and what is the most important goals for their family, then we as professionals are not doing our jobs. We must look past what we think is best for the child, and remember that it is the family that should know what is best for them.

  43. Hello! Thank you so much for sharing your story I really enjoyed reading your blog post.

    In regards to your question “how do you help families get through those early days in EI and focus on what’s important?” I think one of the most important things is for the EI provider is to make sure the family understands all the information that is being given to them. I think once they understand and process it will be a bit easier for them to be proactive in their child’s progress. I also think it’s very important that a good relationship is established between the EI provider, the family, and the child. Having that trust and bond will help the family be able to express their concerns as well as vent when ever necessary and help the EI provider guide the families goals when they don’t know where to start. The EI provider can also help guide the parent and child relationship since they are working extensively with both. Lastly, I think as an EI provider allowing your family to vent without being judged and you being able to help them to the best of your abilities is very important. I would say overall it has to be a very balanced relationship free of judgment.

  44. Thank you for sharing this story! I think when addressing families in this situation, exhibiting patience is one of the most important aspects of care. Allowing the family time to really understand their situation, while also providing helpful information and educating them on aspects of the situation they may not be aware of is a crucial first step in EI. Additionally, I believe it is important to take time to understand the family’s emotions and their perspective on the situation before taking any action, so as to take into account their major challenges, goals, and cultural beliefs. Doing so will help the family feel comfortable receiving care, feel emotionally supported, and will make addressing their needs easier.

  45. Thank you for sharing your story!
    One of the best feelings I get is from seeing someone progress and knowing that I partook in that beautiful growth. While every child does not have the same timeline, you will feel a sense of fulfillment when your child reaches their goals as that is what is important. Through he early stages I encourage families to let out their grief and emotions whenever they need to because if they bottle it in, it will only take longer to live their best fulfilling lives. And finally, we are all given things that we have no choice on, but living life is making the best of the things that we do have choices on!

    • How will you help families get through those early days of EI is by reminding them of the main goal which is having there child be able to be a child.

  46. Thank you for sharing you story!

    To answer the question, “how do you help families get through those early days in EI and focus on what’s important?” is to keep an open mind and understanding of the families background. It is important to understand that families come from diverse backgrounds and having an open mind can help the transition in EI. Having that personal knowledge of the families does create a stronger bond with them and can help easily address the child’s every need! Families can be reassured that their ECI provider is doing everything they can to diligently understand their situation and modify visits to their level of comfort. This way families can feel comfortable and secure about addressing their concerns or even just having someone to talk to.

  47. Hi Erin,

    Thank you for sharing your story I am sure several parents found it helpful and comforting.
    To answer your question, I think the first thing to do as an EI provider is to acknowledge what stage of grief each caregiver is experiencing. Letting parents vent and express their pain and confusion first is really important in order to get in the right mindset for the future. Then, make sure they understand the information that you are telling them, instead of letting them passively moving through the process. Ask them if they have any questions often and answer them in as much detail as possible. To focus on what’s important, EI providers need to have easy-going conversations with the parents to figure out what is important to the family and then suggest goals that align with their views. As said in the post, some parents don’t know where to start, so listen to their concerns and frustrations and get to know them so that you can focus on small steps that will help their child move in the direction parents would want.

  48. Beautiful story, Erin!

    I can only imagine how hard it would be to initially go through acceptance alone. I can see that you’re doing everything you can and how genuine and raw your emotions are about your child’s growth, so please do not be too hard on yourself! Remember, you are doing your best alongside with all your wonderful support! All families have different needs for their children making the work done between Early Intervention and families very critical especially when going through challenging times. In response to how to help families get through the early days in EI I believe is to focus on the goals and empathy from those that support you, personal priorities you have for your child, and to especially remind yourself that you are doing your best! I appreciate you for sharing your story and hope that all is well!

  49. Thank you for sharing your story!
    I believe one of the first things that is most important to do, is to make sure you relay all the relevant and crucial information to the family. I would take the time to help the family fully understand everything they need to know. Since having to learn all this new information can be very overwhelming. Another way to help families during the early days of EI, is to help them prioritize their child’s critical needs first. It can be easy to get lost and overwhelmed with what you should be doing as a parent, therefore it’s a good idea to write out specific goals to focus on. Lastly, is to be able to support the parents. Since all the focus is on the child, it’s important to also check in with the parents and see how they are holding up. Be there for them as a listening ear, and make sure you are telling them what a great job they are doing. I believe a little bit of support can go such a long way!

  50. Hi Erin!
    To answer the question based on your experience, it is important to first address the parents’ needs and emotional state. Checking in with them and getting them to a calm state so that they may be able to absorb information will make the experience smoother. Then focusing on what the child can do instead of what they can’t do may be helpful. Giving parents reassurance is sometimes what they need to feel better.

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