Lynne Griffin, R.N., M.Ed

Lynne Griffin R.N., M.Ed.

Field Guide to Families

Navigating the Emotional Terrain of a Child's New Diagnosis

Parenting the child with special needs

Posted Sep 13, 2012

In a new series of posts called Conversations, I’ll be taking an important family life topic and getting the inside story from a parent or expert –someone who can give us insight into the nuances of the issues. 

In the first of these posts, I’m delighted that Laura Rossi has agreed to talk with me about being the parent of a child with special needs.

Lynne: Welcome to Field Guide to Families, Laura. Can you briefly share with readers how you and I got connected. 

Laura: Sure. You have a unique place in the writing world—your novels, your nonfiction writing about families—and I knew about you both as an author and writer for Psychology Today.  So when a mutual friend posted a link to a piece I wrote for Huffington Post and you shared it on Facebook, I was thrilled. It started a conversation between us about this topic and much more. 

Lynne: It’s true that piece resonated with me. You were writing about parenting through those unexpected times and spoke about both of your children with such compassion. 

Laura: I’m so glad that came through. I’m the proud mom of 9 year old girl/boy twins, one typically developing and one with special needs. They are my greatest accomplishment. 

Lynne: When did you realize there was more going on with your son? 

Laura: Shortly after birth our son required surgery, and afterwards had a bumpy ride catching up on milestones. I knew on an instinctive level when he was very young that he had some issues that didn’t make sense or match up to his twin sister’s development. Being a first time parent though, I convinced myself out of a search for a diagnosis for a very long time. Not exactly denial, but rationalization. 

Lynne: What changed that for you? What put you on the diagnostic path? 

Laura: At about 2 ½, M was diagnosed with Sensory Processing Disorder.  From that point on, it was an emotional roller coaster filled with ups and downs, different doctors, confusing information, conflicting info from school, and of course way too much Googling by Mom. Thankfully, early in the process we took charge and turned to the best doctors in the area at a leading Children’s Hospital in New England. Seeking out the right medical community wasn’t easy but it was worth it, and together we targeted the areas of autism and Tourette Syndrome because those were terms that most seemed to apply to our son. 

Lynne: When I walk parents through the process of finding a diagnosis, I constantly remind myself what it felt like for me when my children were worked up for asthma and allergies. It’s so emotional. How did you feel going through the diagnostic process with terms like autism being thrown at you? 

Laura: As a first time mom, I felt lost and alone and confused. But then in 2010, upon hearing some unexpected and shocking news (M was tested for a traumatic brain injury which eventually turned out not to be true), something changed and clicked for me and on the spot I made a life changing decision to start a blog and to find the virtual silver lining every single day no matter what. This was transformative for me emotionally, and for our entire family. Remember the saying happy wife, happy life? For me it was happy mom, happy family. Discovering and writing about a gift from my children every day for 365 consecutive days has made me a more deeply grateful, patient, and joyful person. I would not be the person I am today without this experience – I’m a better friend, daughter, wife, sister and mom. 

Lynne: You gave yourself a purpose. When parents of children with special needs channel those highly charged emotions into something meaningful, it can be so healthy for families. Where intense energy meets passion, it’s where advocacy is born. In my practice, I see the seeds of advocacy grow first when parents need to know what’s going on with their child. So let’s talk labels. What in your opinion is the upside and the downside of having a diagnosis? 

Laura: All along our journey, I’ve walked the middle line with my husband. I have not been a label seeker nor have I been a label avoider. (My terms incidentally, ones used over and over with our doctors and team members). We have smart and conservative doctors and 100% faith in their skills. Not labeling my son too early has been more beneficial than I can ever explain here, but I’ll try. Our son has baffled educators and doctors with over 25 years of experience. Our careful approach to a diagnosis meant that he got the services and treatment he needed but without the wrong cause leading the way. We’re so thankful that we have a terrific school and team supporting our son. Now that we do have a label—Tourette Syndrome—we’re all adjusting. I know eventually it will focus us, and our son, on what he’ll need to thrive and blossom. The bottom line for us meant waiting for the right label. And it’s proven to be healing. I describe it as “limitless” for our son’s future. 

Lynne: You certainly demonstrate qualities of resilience, the ability to problem solve and communicate effectively. I’ll bet these traits come in handy not just for navigating health care and education systems on behalf of M but because you’re the mom of twins. Can you talk about how your experience is impacted because you have twins? 

Laura: I’ve never known what it’s like to raise a singleton or typical siblings. We’ve always done a delicate dance to make sure our twins feel like individuals but it’s hard not to compare. I know that our children will always have an incredible bond and since M has special needs, I think that bond is even stronger. Of course, we try to offer the caretaking our daughter needs as a sibling of a special needs child because it’s not always easy for her. Still in the end, this is our family and we embrace the good and not-so-good as it relates to everyone. 

Lynne: There’s another example of resiliency! Recognizing there is no perfect family. Whether it’s physical or mental illness or financial or job related issues or any number of other intense stressors--there will always be issues in a family. The key is to address them openly, thoughtfully, compassionately. Did anyone offer support to you? What did that look and feel like? 

Laura: Wow, I’m counting our blessings and I’m truly humbled! It sounds like a cliché but we have had family support from the very beginning when I was pregnant. As challenges emerged that related to my son’s developmental delays, family have been supporting, encouraging, and cheering us on. From extra meals to babysitting, we know we always have extra hands ready to help us. In addition, our strong marriage has anchored us as parents. 

When I started to engage with the special needs community via school and online and through my blog, the support grew and continues to boost me when I least expect it. 

Lynne: Did anyone say or do anything that made it harder for you to process info or get to the place of acceptance in your own way? 

Laura: An early challenge was having family members who were trying to be helpful insist that I was too hyper-focused on our son. Once I explained the medical piece and that I didn’t find that feedback helpful, that behavior all but disappeared. We also had one neurologist with a terrible bedside manner and we switched practices right away. I just knew it didn’t feel right and I trusted my gut.  

Lynne: Are there times when you wish people would keep their advice to themselves? 

Laura: YES! When I was confused and going in too many different directions about diagnosis, therapies, support, a lot of well meaning parents and friends insisted they knew exactly what we needed. I wasn’t as confident and my skin wasn’t as thick and so I was very vulnerable to believing everything I heard. I think the best advice I can give advice-givers is to proceed cautiously and really ask if the mom or dad wants to know everything you’ve experienced. I’ve spent sleepless nights staring at the computer screen and crying. Sometimes less really is more supportive. 

Lynne: Does coping with something so huge make you want to seek people out or does it make you want to withdraw? 

Laura: At first, I wanted to hide. I was prepared on some level for a diagnosis, but once we had one, I felt overwhelmed and unsure. Quickly though, I regrouped and being a Type A gal, I went on a mission to learn, connect, and be out there with it. There is no shame in any diagnosis and the support out there is limitless. It’s the upside of the Internet! 

Lynne: What are your go-to resources for diagnostic information? How about related to coping? 

Laura: I’ve used our doctors, literature from professionals, and the official organization for Tourette Syndrome.  There has not been much I’ve sought out online about coping, which is why I was eager to have this conversation with you. In many ways this personal piece is something I believe parents of children with special needs must offer others.  

Lynne: What do you want other parents to know about going through the process of getting to a diagnosis? Both from a clinical and emotional standpoint. 

Laura: I’ve got a lot of suggestions! Regardless of disability:

  1. Proceed with caution—don’t rush a diagnosis, because the wrong label may not help your child in the long run.
  2. Be honest with yourself about your child’s team—trust is important. You and your child’s doctors are a team focused on your child’s best interests. Learn to communicate well.
  3. Set realistic expectations of yourself, and go at your own pace—don’t try to do too much too soon. You can’t be an expert in your child’s condition hours after you’ve received information. 
  4. Divide and conquer—remember, you and your partner are a team. Use your combined strengths to make a plan and support your child, your family, and each other.
  5. Remember this too shall pass—there are going to be hard days, but thankfully you will adapt and find your own new ways to manage the challenges.
  6. Have faith: it can be traditional religious faith or a more secular but still spiritual pursuits equal support.  
  7. Give yourself emotional space—you need to give yourself time to make sense of things.  Face the dreams of things that may not be for your child, and mourn them if you have to. Through it all remember, if you’re feeling it, you need to work through it. Only then will you be able to be the kind of parent your child needs.
  8. Trust your instincts—you know your child best regardless of any label or advice or expert opinion.
  9. Be brave—set a positive example for your child as well as the support people who have entered your life.
  10. Love now—be in the present, appreciate the small moments, practice gratitude, and recognize the joy right in front of you. Every day with your child is a gift.

 

Laura Rossi Totten has over twenty years of experience as a book publishing and public relations professional. In New York City, she ran publicity campaigns for celebrity and bestselling authors at prestigious publishing houses like Random House and Viking Penguin. In Boston, Laura led public relations campaigns for Fortune 500 companies such as TJX (TJMAXX AND MARSHALLS) and others.

In addition to her public relations work, Laura is a regular blogger for Huffington Post and has featured pieces on NPR’s WRNI-FM, in The Providence Journal, at Babble.com, SheWrites.com, Moonfrye.com, CircleofMoms.com, and The Chronicle of Higher Education. 

To learn more about Laura Rossi Totten, visit her at http://www.huffingtonpost.com/laura-rossi-totten and at www.mysocalledsensorylife.com

Lynne Griffin is the author of the family novels Sea Escape and Life Without Summer and the parenting guide Negotiation Generation. You can find her online here: www.LynneGriffin.com, and atwww.twitter.com/Lynne_Griffin and at www.facebook.com/LynneGriffin.