A Parent's Perspective - Lemonade Lifestyle

Today I am pleased to welcome Alisa of Lemonade Lifestyle. Alisa's daughter Madelyn, or Maddy, as she lovingly calls her, now age 3, was diagnosed with an extremely rare chromosomal disorder, 2q23.1 Microdeletion Syndrome at 8 months of age. Alisa was kind enough to stop by and share some of her favorite resources, as well as thoughtful words of advice for both parents and therapists.

Our life in five words:

Unique, Blessed, Hectic, Evolving, Hopeful

Four qualities I look for in a therapist:

I want a therapist that is HONEST. I do not want a Therapist to give me the answer he/she thinks I want to hear. I want to hear facts and figures. I want to hear proven results. I want to hear worst case scenarios, and then I want them to throw all of it out the door and BELIEVE THAT ANYTHING IS POSSIBLE when it comes to my child. Madelyn is as unique as her chromosomes and I search for a therapist that has THE ABILITY TO THINK OUTSIDE OF THE BOX. A cookie cutter, one size fits all approach will not work with Maddy. We have been lucky to work with several different therapists over the last 3 years, and all of them have been on board with what we envision for Madelyn. We WORK TOGETHER AS A TEAM to make sure that what the therapist is working on during a session at school is being reinforced at home. We communicate often about concern AND praises. Some of Madelyn’s best therapists are not only part of her Team, but part of our Family. Early Intervention is so important, that you cannot waste any time on a Therapist that does not have your child’s best interests in mind.

Three resources I can’t live without:

Otto Bock Kimba Special Needs Stroller with Tray. This stroller has made shopping trips, family outings, and dining out at restaurants a lot less stressful.

2q23.1 Microdeletion Syndrome Support Group and Mommies of Miracles: When I have a simple question like “where do I find a good quality teether for my oral sensitive 3 year old?” Or a bigger question like “how do I find a good Personal Care Assistant?” 2q23.1 Microdeletion Syndrome Support Group and Mommies of Miracles both give great advice. Social media is more than marketing and bragging about what delicious new recipe you tried. I have an entire group of Special Needs Mommy-Friends who I may never meet in person, but they have become some of my closest friends online.

Tiny Love Musical Nature Stroll Toy Bar has bought me 15 more minutes in a store and allowed me to eat my entire meal at a restaurant more than once! Another Special Needs Mom gave this to Maddy for her 2nd birthday and we LOVE it! The clamps will open wide enough to fit securely on the armrest of Maddy’s stroller and will stay in place while she is playing with the attached toys. We’ve also used this on long trips and attached it to her car seat.

Two words (or more!) of advice for therapists working with children:

Please take the time and get to know the child you are working with outside of their abilities and disabilities. Maddy loves music and more than one of her therapists over the years has worked music into her therapy session in order to get more positive results from her. Therapy can feel routine and boring for a child after several sessions, keeping it fun and incorporating play with therapy has been very helpful with my child.

A word of advice for the parents of a child newly diagnosed with 2q23.1 Microdeletion:

DO NOT LET EVERYTHING YOU READ ONLINE SCARE YOU! When Maddy was diagnosed, I desperately searched the internet looking for an article, blog, website, support group, etc that would give me the hope that I desperately wanted. I wanted to know that everything was going to be OK, even though we were just given the worst case scenario by her doctor. Three years ago, that information did not exist, but hopefully now someone can stumble across Lemonade Lifestyle and see that Maddy lives WITH 2q23.1 Microdeletion Syndrome and her diagnosis does not define or limit her way of life.

One dream for my child:

I dream of the day that Maddy will be able to communicate with her family and friends, either with traditional speech or using assistive technology.

What I do to rest and recharge:

Every year, three of my closest friends and I get away for a weekend of shopping, dining at fancy restaurants, and dancing the night away. We also try to get together once a month with or without our kids to catch up. We can talk to each other about anything and everything…I never feel left out or envious of their lives because we all have our own personal struggles. When we get together, we just have fun and the serious parts of our lives seem a little easier to handle.

Thanks so much for stopping by, Alisa! Readers, please be sure to visit www.lemonadelifestyle.com to follow Alisa's journey in raising a child with an extremely rare disorder. Alisa's post in honor of Rare Disease Day 2012 is a great place to start and to learn more about Maddy.