February Expert Insights

Monday, February 11, 2019 @ 9:00am Pacific Time

What if you got your favorite 2e experts all together to answer a single question? That's what we did with these 9 fabulous experts. You'll hear each of their perspectives on the following question:

If you're working with a parent who's new to this journey, whose child has just received a diagnosis, who may feel confused and possibly grieving, what words of wisdom would you share?

What stands out for you after hearing these perspectives? Please share your thoughts in the comments below.

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30 Comments

  1. Evelyn on January 27, 2020 at 5:48 pm

    I don’t remember grieving at all. More a sense of relief to receive a diagnosis (both kids) and a large dose of curiosity to learn and finding solutions. It’s been 9 years.

  2. Felicia Shockey on April 8, 2019 at 7:58 am

    I find it reassuring that other parents feel my feelings and grieve over how things are/were suppose to be. We instead need to project hope and help our son create a life he feels good about and can successfully fit into!

  3. Gabrielle on March 12, 2019 at 1:46 am

    You are not alone! We had a similar experience in that it was something that helped explain things and felt relief and acceptance rather than shock/grief. Not long before our older daughter’s diagnosis, we had the experience of our other child (10 or 11 months old at the time) being diagnosed with a life-threatening congenital heart defect that could only be corrected by prompt open heart surgery. And it was the same with that, not really any grief or shock, but acceptance and “what happens next/how do we move on from here”.

  4. Andre and Willa on March 1, 2019 at 9:14 am

    Andre and I did not experience shock/grief with our son’s diagnosis To us, it was just a case of “so that is why he is so different, cool – how do we move on from here?” Are there more parents out there that had our kinda experience when hearing the diagnosis or are we that weird? Please tell me we are not alone – PLEASE!

  5. Brigitte Bolte on February 15, 2019 at 11:50 am

    Having been in ‘the trenches’ for several years now, with my family and my kiddo, I continue to reflect on and feel badly about, what is said and how one reacts around their child is being observed by that child. Having an ADHD diagnosis myself, I fully admit that there are moments when I don’t act well and incredible bad about it. This is an area of growth for me.

    • Debbie Steinberg-Kuntz on February 15, 2019 at 2:01 pm

      We have all been there, Brigitte. Go easy on yourself. Dan Siegel’s talk on Day 1 of Summit 2019 addresses this. Your dedication in being here and thinking through these important things speaks volumes. Hugs from the BQ tribe!

  6. Hunter on February 14, 2019 at 5:02 pm

    We’re 7 years from the ASD diagnosis but only a few months from the latest neuropsych eval that showed us how bright our son is. There’s still a lot of ambiguity to tolerate (no guarantee he’ll ever live independently) but I’m more hopeful and feel like we can have a positive impact with the right knowledge.

    It’s a marathon of a ride for sure.

    • Debbie Steinberg-Kuntz on February 15, 2019 at 2:03 pm

      Hunter, You’re so right. It’s such a marathon and at every age and stage we keep ‘adjusting the knob.’ How wonderful to have more information about his strengths!

  7. Julie Lazarski on February 13, 2019 at 2:42 am

    As a mom who recently learned her 4 year old son is highly gifted, SPD and ADHD I so needed to hear this. Thank You! I am grieving and scared (I had never heard of giftedness, nor SPD until a few months ago after receiving neuropsychological testing results) but know it will be OK.

    • Sara nied on February 13, 2019 at 3:11 pm

      Julie, I am so glad this is just the message you needed to hear. Those feelings of grief and fear are so natural, especially in the early stages of receiving a diagnosis. I hope you will continue to find comfort and reassurance as we progress in the IdeaLab. You are so not alone. So glad you’re here!

  8. Helen on February 12, 2019 at 5:17 pm

    I would love to expqnd upon the nitty gritty of building a community for parents. The vital role of finding your tribe came up again and again, and for those new to the journey, it’s hard to know how to make that happen and make it a priority.

    • Sara nied on February 16, 2019 at 9:55 am

      Great thoughts, Helen. You’re right, its hard to know where to begin. First off, I am so glad you are a part of the IdeaLab, this is a great community for parents that we are just beginning to build. So many thoughts on this, from connecting with other parents of 2e kids in your child’s school (if you can identify them), to finding local people in the IdeaLab. Let’s continue to discuss this, and hear how others are finding their tribes.

  9. Yumiko on February 11, 2019 at 11:03 pm

    Thanks a lot for those encouraging words to start this lab!!!

  10. simonetta edwards on February 11, 2019 at 8:47 pm

    We are taking the road of getting an assessment because we want to make sense of what is going on….the assessment unfortunately leaveshe us at first even more confused. .we see the assessment as a way to get to the bottom..while instead we find ourselves at the beginning. I think some of us often see a ltitle bit of themselves in the diagnosis and it can be scary. I like the idea of trying to scroll off the sense of urgency. .the idea of being able to fix it right now…in reality there is nothing to fix. .it needs to be embraced.

    • Sara nied on February 16, 2019 at 9:56 am

      Great thoughts, Helen. You’re right, its hard to know where to begin. First off, I am so glad you are a part of the IdeaLab, this is a great community for parents that we are just beginning to build. So many thoughts on this, from connecting with other parents of 2e kids in your child’s school (if you can identify them), to finding local people in the IdeaLab. Let’s continue to discuss this, and hear how others are finding their tribes.

      • Sara nied on February 16, 2019 at 9:58 am

        Simonetta, it’s so true that getting an evaluation with all sorts of new information and suggestions to process, that it can leave you feeling more lost. And I am glad you are working to embrace it, slow down, and take things step by step. Start with the biggest concerns first, ask for help when you need, and we are here with you along the path. Glad you are here!

  11. Stacie on February 11, 2019 at 8:15 pm

    I’m so glad I finally found my tribe! **fist bump**

    • Debbie Steinberg-Kuntz on February 15, 2019 at 5:47 pm

      Fist bump, Stacie!

  12. Tammy on February 11, 2019 at 6:49 pm

    So many things stood out and bubbled up as I watched this:
    –It’s okay to grieve…I don’t think I have ever given myself time to do this.
    –this is a marathon not a sprint…this is SO important for me to remember right now.
    –our child is the same today as he/she was yesterday, but now we know what we are dealing with so we can learn how to move forward.
    –find a therapist who works with sensory integration. We have worked with multiple specialists over the years and have never really known what to look for while trying to find the right person
    –how you react is being seen by your child, make it exciting.
    –It is not your fault
    –These kids have amazing brains and will do incredible things in this life…in their own way.
    I am so thankful that I received the email telling me about the summit. It came at the perfect time. I’m really looking forward to learning everything I will be learning as we go through the IdeaLab with other parents and professionals. I feel like a sponge ready to soak up everything! I am so excited to see where this learning leads.

    • Sara nied on February 16, 2019 at 9:59 am

      Wonderful highlights, Tammy!! Great reminder for all of us, too. Thank you!

  13. Linda on February 11, 2019 at 5:41 pm

    My granddaughter’s diagnosis of ADHD was several years ago (she is now 13). I’m wondering if there may be other additional unknown diagnoses and if further evaluation is needed. Her anxiety level seems high as she picks and tears her fingernails to the nub. We have always known she was bright verbally, could read very well long before starting school, had a huge vocabulary etc, but no specific testing for identification of giftedness has been done. I loved the reassurance that “it’s not your fault; you are a good parent”. Like many parents, my amazing daughter-in-law fears she is not doing a good job.

    • Sara nied on February 11, 2019 at 9:29 pm

      It sounds like your daughter in law is lucky to have you. These kiddos are certainly complex, and strengths and struggles shift over time. And anxiety and ADHD do often go hand in hand, to some extend. In an ideal world, evaluations would be updated every few years to reveal developmental changes and tweak the plan for support, but even without the official diagnosis, it’s really helpful to keep some of the calming strategies in mind for kids that are prone to stress and worry. Glad you are here!

  14. Terra Greene on February 11, 2019 at 5:01 pm

    So much value in their statements. I hear are normalization and hope! I hear love and resiliency!

    As a kid, my diagnosis grieved my mother badly. She taught me to hide my dyslexia. I’ve taken the opposite approach. When my son was first diagnosed I fought grief knowing that what I learned from my struggles are compassion and resiliency. Who wouldn’t want those attributes for their child??! When I was ready to discuss dyslexia with my son, I normalize his experience and I fed him little bits of information at a time. I’m ready for teachable moments where I can tell point out my differences and difficulties. It opens the door for him to tell me about his experiences. I’m proud to to say that he wrote that dyslexia is one of our family strengths. Gotta love that kid!!

    • Sara nied on February 11, 2019 at 9:35 pm

      This is beautiful, Terra. How powerful for you to take your own childhood experience, and use it to best support your son. Modeling that compassion and resiliency will not only help him manage his dyslexia, but, like you say, will teach him those character strengths. I love that he calls dyslexia a family strength! He’s wise beyond his years! 🙂

  15. Kate Bunton on February 11, 2019 at 9:09 am

    The statement that stood out the most to me is “It’s not your fault”. I feel like so much of my life is focused on how I caused my kids to be the way they are and what I am doing wrong. There is so much condemnation of parents and parenting skills. I feel so judged! As a perfectionist, having imperfect kids is HARD! As a person who was once in the field, how did I wind up with 2e kids? I know I need to let go of this and just move forward, but some days are harder than others. I really wish there were resources local to me that were specific to 2e kids. There is a real lack of understanding of how a child can be at two ends of the bell curve simultaneously.

    I am so happy to be here because this is the first time I have interacted with other parents and professionals who truly get it!

    • Sara nied on February 11, 2019 at 9:45 pm

      I hear you, Kate, and I am so glad you’re here. That grief can be so intense and so long lasting. I really believe that the better we understand the struggles, the “why” behind the behavior, and come to terms with it not being our fault, the more that guilt lifts. You’re so right that some days are harder than others. Hopefully with this new found support and connection with similar parents, the good days will start to outnumber the bad 🙂

  16. Lauren on February 11, 2019 at 8:28 am

    I had tears watching this! How I have needed to hear this message not only six years ago when my son got his diagnoses, but probably 100 times since! This video is a keeper I will come back to again and again on “those” days where I feel deflated and hopeless. It reminds we that there is hope, there is a positive path forward, and it is a long game needing support and self-care along the way. I am so glad to be a part of this community!

    • Kim on February 11, 2019 at 11:04 am

      I liked that you showed so many different experts. i didn’t connect with all , but you gave us a nice variety so that we all probably found something to connect with.

      I like that you talked about how each of our kids is going to be wired differently. So even if you have a Dyslexia label your kids might not have the same weakness and brain as another Dyslexic kid. I was shocked after two years of Orton Gilligham to learn that my son had not phonics issues, but instead had a visual processing issue. Still Dyslexic, but one of the other 4 areas of the brain associated with Dyslexia. Entirely different treatment to overcome the reading and writing issues.

      I loved the reminder that this is a Marathon, not a Sprint. The first assessment might not give you all the information you need. We defiantly needed to then delve deeper to truly get to what part of the brain was causing these weak areas. To not trust the experts as we know our kids best.

      Also, to embrace the Giftedness. I mean our kids are in the top 2% of intellect. Imaginational, Sensory, Emotional. Cognitive, Psychomotor, Overexcitabilities might make them different but we all know these when controlled are benefits as adults.

      • Sara nied on February 11, 2019 at 9:56 pm

        Great take-aways, Kimberly. It’s so true that a diagnosis doesn’t necessarily mean all kids need the same remediation, as so much depends on the specific wiring of that child’s brain. That’s why I love the model of small experiments, making hypotheses and trying different things to see what works. And I love your point that some of the greatest challenges our kids have are also huge gifts, especially as we learn to best manage them as we age. Thanks for your insights!

    • Sara nied on February 11, 2019 at 9:49 pm

      This is wonderful to hear, Lauren! It really is a good reminder, isn’t it. I love the idea of keeping it on the back burner for particularly tough days. Great idea!

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