I recently had the opportunity to talk to family life expert (and novelist) Lynne Griffin on her Psychology Today blog. Lynn invited me to kick off her new series of posts called "Conversations" where she takes an important family life topic and gets at the inside story. In the first of these posts, we talk about being the parent of a child with special needs and dealing with a new or first-time diagnosis.
Lynne: Your Huffington Post piece resonated with me. You were writing about parenting through unexpected times and spoke about both of your children with such compassion. When did you realize there was more going on with your son? 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. 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 on my personal blog 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 My So-Called Sensory Life, the support grew and continues to boost me when I least expect it.
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 and 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, here are my Top 10 Ways to Deal With A Diagnosis:
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.
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(This post is adapted from a Psychology Today post published on September 13, 2012)
Lynne Griffin, R.N., M.Ed., studies relationships and family life. She is the author of Sea Escape: A Novel (Simon & Schuster, 2010) and Life Without Summer: A Novel (St. Martin's Press, 2009) and the nonfiction guide Negotiation Generation: Take Back Your Parental Authority Without Punishment (Penguin, 2007). In addition to teaching family studies in Boston and abroad, she teaches fiction writing at Grub Street Writers. She is a frequent radio and television guest, and a contributor for Boston's Fox 25 Morning News. Griffin lives in Massachusetts with her family.