About

I’m writing this blog as a way to explore how I can be more joyful, courageous and compassionate in life, specifically through the practice of being a parent of a child with special needs.

This blog is for any special needs parent (and the people who care about them) who is interested in letting go of what they thought life would be like in favor of embracing what actually is. I know I’m not alone in realizing that special needs parenting offers heartbreaking challenges and breathtaking beauty that bring me closer to my humanity than I ever thought possible.

I’m leaving out lots of details about me and my family on purpose so as not to exclude anyone who wants to join me on this journey.

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15 Responses to About

  1. Love your blog! I am not a parent of a special needs child, but one who CHOOSES to spend my day with these wonderful gifts. Thank you for being a voice of reason for parents in your same shoes, and also a view for people who care about these little ones and would like to know more about your daily struggles and joys.

    Keep writing……I love your voice!

  2. Wow, thanks so much Kathryn! I try to write my truth and I’m so grateful when I connect with someone who resonates with me. Looking forward to your blog as well.

  3. Melissa says:

    Just discovered your blog due to the Huffington Post article. Thankful to have this to share with friends with children with special needs. Also, your “map” really helped me to understand more about the intricate web of special needs parenting. Thanks for sharing!!

  4. MW says:

    Cristin Lind – saw the article about you and your family in the “Daily Mail”. Awesome job you guys are doing! You are a breath of fresh air, after continuous tragic stories about mothers and fathers doing horrendously abusive things to their kids, for no comprehensible reason at all. Take care, and wishing you the best!

  5. Carmita (Mita) Vogel says:

    Ms. Lind- I notice that your Care Map is copyrighted- I would love to show it in a graduate masters class that I teach (U Maryland School of Social Work). How do I get permission to do that? It is a powerful visual for future workers to see about the multisystemic nature of medically fragile families.

    Thanks

    Mita Vogel

    • Cristin L. says:

      Absolutely. Stay tuned for a short publication on creating, using, and evaluating care mapping as a tool to facilitate family-centered care and authentic family-professional partnership.

  6. Mary Erickson says:

    Cristin,
    I am a nurse practitioner who works with special needs children and their families providing care coordiantion in a special needs healthcare home clinic . One of the specialty physicians forwarded the Huffington article which was then sent to all Professional staff in our organization. I love your map and am overcome by the breadth and depth of the details. I have used similar maps to try to share the complexity of families lives with my colleagues but clearly have many big omissions after seeing yours.

    I have worked with colleagues and families to share their stories in video and simple maps at presentations at conferences but your map “says it all” ! I would also like permission to share your map with some of my families and clinical colleagues and if possible with presentations about. I think repeating the process for some families would clarify for them why they feel like they are spinning all the time.

    I am glad you found a “way to explore how I can be more joyful, courageous and compassionate in life, specifically through the practice of being a parent of a child with special needs”. My hope is to assist other families to move toward a similar focus on joy, recognizing their courage and compassion and recognizing their level of parenting exceeds most others

    Namaste

    • Cristin L. says:

      Mary: Thanks for being willing to tackle the issue of how to communicate the complexity of a family’s needs. If you can hang in there for just a few days, my partner, Dr. Rich Antonelli of Boston Children’s Hospital, and I will have a brief “how-to” guide available to help you do just the things you mention above. Stay tuned–it should be very soon.

  7. Mary Erickson says:

    Thanks,
    Many parents and caregiverw sill benefit from this tool.
    How wonderful you are working with Dr Antonelli. I have read much of his work and am working with Betty Pressler on our project,.who I believe he may know,

  8. Bryn says:

    I just found your blog through the Huffington Post article. I had a link to the article saved in an email, but it took me a few weeks to work up the courage to look at it. My son was born 3 1/2 months ago. An unexpected NICU stay led to genetic testing which showed a unique duplication of material on one of his chromosomes. Because nobody else has this same duplication his doctors can’t give us much information about what to expect for the future other than to say, “He’ll likely have delays and disabilities but we’ll just have to keep evaluating him to determine what they are and how severely they affect him.” I’m still feeling overwhelmed by all the unknowns, but I find it comforting to see that there are people who are further ahead on a similar path and are willing to share their experiences and insights. Thank you.

    • Cristin L. says:

      Bryn, to say “hang in there” or “I’m thinking of you seems so insignificant right at this moment. I can say it gets better. Strangely, it doesn’t just get better, it can be great. At least it is for me. It takes a while, and connecting with other families–in person, at conferences, in groups (check out your state’s parent-to-parent group, it better yet tell me what state you’re in and I’ll find it), on line–it matters and it helps. How’s your child doing? How are you doing?

  9. Bryn says:

    Cristin,

    Thanks. My little guy is doing fine. Aside from a flurry of specialist appointments shortly after he came home and our weekly PT appointment, things haven’t been much different than when my daughters were this age. I’m doing pretty well, too. It can vary by the hour, but for the most part I’m fine now as long as I don’t let myself spend too much time “what if”-ing the future. Having three kids to keep up with definitely cuts down on the amount of time I can spend doing that. I’m in Pennsylvania. If you know of a parent group here, I’d love the information. I think something like that would be helpful. With him not having a specific syndrome I’m not sure where we fit in.

    • Cristin L. says:

      Here you go: http://www.parenttoparent.org/. It’s the Pennsylvania Parent-to-Parent organization. If you go to their website and request a match, they will find you another parent mentor. They also have a NICU mentor program. I don’t like to give advice, but I do wish I appreciated the knowledge and expertise that other families can share sooner and had reached out earlier–especially since we didn’t have a diagnosis for many years, just like you! We get so used to listening to the docs, but families are the experts when it comes to navigating “the system”. About the what if’s, I totally hear you. I found mindfulness meditation (sometimes called vipassana) a great way to practice being in the moment. But again, that’s what works for me.

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