A Parent's Perspective - Clara's Happy Thumbs

Please join me in welcoming Lisa, mother to adorable Clara, age 10. Clara is a sweet little girl with DiGeroge Syndrome (a.k.a. VCFS or 22q11 deletion) and autism. You might recognize Clara as the little girl who impressed and gave hope to so many this past fall with her rendition of the Coppelia ballet, which circled the world on YouTube. I am honored to have Lisa and Clara stopping by today!

Our life in four words:

For the last 10 years, I have found that our lives have been filled with many extremes:

Chaotic to Peaceful – I’ve struggled with finding the right balance between being a mom, overseeing a home-based autism program, managing therapists, working full time, booking and taking Clara to appointments, and advocating with the school and others.   During the first few years I found it highly stressful to maintain this fine balance and I struggled to find peace in my life.  Then about 2 years ago I realized that I would never find peace if I waited until the chaos ended – but I could, through my faith and accepting that I was doing the best I could, find peace amidst this chaos.

Compassion to Persistence – Being a mom to a special needs child has enabled me to expand my capacity to love unconditionally, not just Clara and her sister, but those who are differently abled. When opportunities arise, I am always amazed at how easily this gentle child connects so easily to these other special people of all ages. This unconditional love enables me to see past Clara’s disabilities and believe in her potential and persistently encourage her to keep trying new things. Persistence also extends to my need to advocate on her behalf without giving up in order for her to have the supports she needs at school and in her community, as society does not yet create equal opportunities for special people like Clara.

Five qualities I look for in a therapist:

1. an ability to put aside all judgments about what Clara is capable of accomplishing
2. to abolish any inhibitions and be as fun and crazy as any child
3. to be completely reliable, showing up on time to work with Clara
4. to be present when working with Clara ie. keeping any mental “baggage” at the door so it does not affect therapy time with Clara
5. a willingness to go above and beyond the “call of duty” when possible (eg. taking Clara on an outing, videotaping her dancing and posting it on You Tube!); this has built strong bonds between Clara and her therapists which enable wonderfully amazing things to happen!

Three resources I can’t live without:

1.  My laptop, phone and internet connection: for research; to connect with other parents and healthcare advocates/professionals for moral support; autism and special needs related APPs; my iphone camera and video to capture priceless moments to help document our journey.
2. My books on nutrition and special diets: eg. SuperBaby Food by Ruth Yaron, NourishingTraditions by Sally Fallon, Healingthe New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies by Kenneth Bock, Breaking the Vicious Cycle by Elaine Gottschall; if I had not been able to heal Clara’s gut first, her persistent cycle of eating – vomiting – diarrhea would never have been relieved, enabling her to have the focus to succeed in her home based autism program. 
3. Resource of people I have come to rely on and can “bounce” ideas and concerns off of:  autism consultant, Jonathan Alderson, who founded the Intensive Multi Treatment Intervention Program (www.imti.ca); our naturopathic doctor; DAN doctor (www.integrative-medicine.ca/ ); osteopath; and chiropractor (www.turnerwellness.com).  Build a team of people, who believe in the potential of your child, around you and your child for support.

   Two words (or more!) of advice for therapists working with children with DiGeorge Sydrome and autism:

Believe in the possible. Once Clara was walking, she had difficulty still going upstairs by herself and insisted that she be carried up when it was bedtime.  Wanting her to become more independent and believing that she could do it, I sat on the top of the stairs one night while she cried on the bottom step. I encouraged her with lots of enthusiasm and excitement, never doubting for an instant that she could climb the stairs by herself. Over a 25 minute period, Clara very slowly, one step at a time, climbed the 14 steps to join me at the top!  I picked her up, spun her around and kissed her all over and told her that she could do anything she put her mind to. Every day after this, Clara walked up the stairs herself with confidence.

Set the child up for success: This builds confidence and the desire to continue striving to accomplish more. If the child is having difficulty mastering a task, find ways to break it down into smaller bits, for which the child is able to succeed.  Then as the child succeeds, celebrate like crazy with high fives, a happy dance, or lots of praise.  At one time Clara had difficulty tying her shoelaces. She would work at it to no avail. So, we broke the exercise down into smaller bits: first she learned to make two bunny ears and hold them in each hand. Then she learned “how to go over and under and pull”. Then we had her put the two parts together and gradually she mastered this exercise. Every step of the way we celebrated and cheered her on.

A word of advice for the parents of a child newly diagnosed with DiGeorge Syndrome and autism:

Never give up on your child, regardless what professionals say. Believe in your child’s potential and do whatever is within your ability to nurture his or her interests. During the first three years of Clara’s life, doctors and specialists asked if we wanted them to intervene medically or just let her die. Another doctor told me that she would spend her life going in and out of hospital. A speech therapist told me that she would never talk. Her autism diagnosis was given as if it were a life sentence. If I had chosen to focus solely on all of this, it probably would have affected what I believed she was capable of; instead, I shelved those beliefs and continued to love and support her in whatever way possible providing her with various different opportunities. Over time, none of the “sentences” proved true; in actuality, Clara is now a tiny bundle of energetic joy, who, when she was ready, walked at age 4 and started speaking when she was 6. Her fascination with ballet, her amazing memory, and desire to perform resulted in her learning the fine details of the Coppelia ballet, which, when videoed, went viral on you tube in the fall 2012. She is now by far the most extroverted member of our family!

One dream for my child:

Recently, I asked Clara what she wanted to do; despite her difficulty with her expressive language, Clara managed to say: "I want to make people laugh. I want to dance on a stage." Clara's spirit, determination, and response to this question have compelled me to do whatever is possible to assist her in her development to help make these dreams of hers a reality.

      

      

What I do to rest and recharge:

I have been blessed in that many years ago my grandparents decided to build a small cottage on a lake north of Toronto. Being able to escape to this natural surrounding alone or with the girls, for even a day during the spring, summer, and fall, to read, rest, and relax rejuvenates me. I find the sound of water unbelievably soothing. Also, finding time to go for a walk alone there or in the city gives me opportunities to think through issues and plan my time – a solace that helps me keep everything in perspective and helps to connect me with my faith and the peace I so treasure.

Lisa, thank you for stopping by to share your perspective! Readers you can follow Clara on her blog, Clara's Happy Thumbs, on Facebook, Twitter, and YouTube.

And for those who missed it, here's Clara's inspiring dance: