How Creating a Magical World Helps My Girl Thrive

My girl stayed up until midnight so she could wish herself a happy 11th birthday. As she fell asleep, she wondered if her acceptance letter to Hogwarts would arrive soon. She thought it was really cool that she was finally as old as Harry Potter was when he discovered a magical world where he could fit in and escape the Muggles.

I thought about that idea for a while and realized that, over the last 11 years, we had created our own magical world. I wish I could say I had planned that all along. Actually, it was out of necessity; creating a magical world for her was the only way she stood a chance of surviving in this world.

My special girl was born with differences that impacted her from the moment she arrived in this realm. In the days after her birth, I looked for anything that could guide us. I couldn’t find any information on babies like her. The doctors couldn’t answer my questions. She was my 4.5-pound, eight weeks early bundle of love and mystery.

About a week after she was born, I walked up to her bassinet in the NICU, leaned over and said: “There are no books about you. I checked. So, we’re going to have to figure this out together as we go along.” Wanting to give her the best life possible became my purpose.

When I brought her home, I had to figure out a different challenge or complication every day. Her body wasn’t fully developed and her special situation made everything different. I threw out all of the baby books. None of them applied. I really hated the one that claimed to predict what I would see over the course of her first year. It was so glaringly wrong about her that it actually made me mad. I would have set that book on fire if I could have. For example, there was no chapter on what to do if your baby started drowning during a feeding.

I slowly started developing my girl’s magical world, one step and day at a time. I created a world in which her needs made sense. Therapies, equipment, rigid schedules, and holding her tight and upright so that she could sleep were just part of our day. So were finger painting, puzzles, parades in the living room, the wind, lady bugs and tutus. And The Wiggles. They were there a lot. I kept seeing that, when her needs were met, she could be happy and thrive. So, I kept building her special world.

For a while, I worked really hard so we could straddle both worlds. Every treatment goal was set to help her function in the “real world.” I tried so hard for us to fit in because I thought that was the key to success in this high functioning world everyone kept telling me she needed to be a part of. I also pushed desperately because I thought that was the only path to a happy life.

We’re constantly told to make sure our kids follow “the formula” so that they can grow in to “high functioning adults” who succeed in the “real world.” Pre-school, elementary school, activities, middle school, more activities, high school, the “right” activities so they can get into college, college, happy life with a strong marriage that doesn’t end in divorce, mentally and physically healthy kids, great job, cute house and an environmentally friendly mini- van. Isn’t that the promise?

If you shove a kid into some box and check off every item on some list, they’re guaranteed a happy, hassle free life, right?

When I tried pushing her into that standard box, things went really wrong. Every single time I didn’t follow my gut, we paid for it. When I tried telling teachers, friends and family members about her needs, I got some understanding from certain people. My girl is cute, smart, well behaved and a wonderful human being. It’s tough not to like her (I’m a bit biased). Perhaps even more importantly, her needs are invisible. It’s easy to think she has over-protective parents who are blowing things out of proportion. People thought she’d be fine once they were involved.

Unfortunately, their understanding was usually short lived. Someone would forget to implement a strategy or assume she would deal with whatever they did. She would fall apart every time. It was always quick and intense. Setbacks could range from mild to awful and could last weeks to years. Ultimately, they would accuse her of being a spoiled child and us of being terrible people. At a meeting about school based services, a program coordinator accused us of being overachieving snobs who created a disorder to justify why we were disappointed in our daughter. Friends and family said and did their fair share, too. We were repeatedly told there was no room for different in this “normal” world. Why bother trying to fit in to that?

Truthfully, over time, I came to love our magical world. Our home and routine were safe and familiar. Her needs were normal and made sense. Our life was filled with laughter, music, dancing, books, and crafts. We went on adventures in a way she could handle and enjoy. There was love, acceptance and support. We met other families that had created their own magical worlds. We formed a tribe in which we didn’t have to hide or pretend. In this world, my girl continued to grow and thrive.

As time passed, we invested less effort trying to “fit in.” I’ve given up on hiding and pretending. Accepting who we are and what we need as a family is easier and healthier. Who we are close with and depend on has also changed. She did nothing wrong and shouldn’t be embarrassed by small minded critics. In our magical world, she makes total sense. She is not an inconvenience or an imposition (both are words that others have used to describe her). In fact, in this world she is smart, funny, witty, healthy, fun, creative, supportive and loving. She is able to succeed on her own terms, in her own way.

Contrary to what many people think, we travel between the two worlds daily. She can do this successfully for three main reasons. First, as a result of how her life is set up, her body, nervous system, and emotions are regulated enough that she can manage many of the challenges she encounters. Second, she can choose when to really push herself because she knows she can return to a world in which she can recharge. Third, she knows she is loved and accepted for who she is. Since love, support and acceptance are unconditional, making a mistake or needing help are seen as part of life instead of a sign of weakness or something to fear.

People who criticize our magical world say that we’re not preparing her to live in the real world. They say we need to push her more and teach her to tolerate being uncomfortable so that she can succeed. While this makes sense in theory, it doesn’t actually work. Shoving a person in a box that doesn’t fit and expecting them to perform like everyone else plunges them into crisis.

Human beings don’t succeed and grow during a crisis. Instead, they numb, deny, and push beyond what they can handle to survive it. Growth comes afterward. It’s also not guaranteed. Plenty of people never recover after living in a state of crisis for a long time.

Most people don’t thrive when they are taught they have no choice but to suck it up and deal. Feeling like a failure every day takes a huge toll that may not show up for years. Sadly, it will eventually show up.

Creating a magical world for your child is an individual decision. It is a parenting and lifestyle choice because it entails tremendous sacrifice. It will also completely change you and your perception of people and the world. However, if following the standard “formula” to create a “high functioning adult” isn’t a guarantee, it’s important to recognize that other paths can be valid.

My experience has taught me that accepting a child’s strengths and challenges and creating a world in which they can manage the former and build on the latter is actually a great set up for success. My girl has goals and dreams. She is still held accountable and responsible for her end of the deal. However, by not forcing her to go numb or be an anxious wreck for the sake of following a formula, she’s learning to set goals and be flexible in how she achieves them.

My girl is 11 now and our magical world will continue to evolve. She and I both know that. We’ve spent 11 years figuring it out together. That strategy seems to be working. I wish I could tell you I had a plan. All I’ve ever had is endless love, hope and determination to give my girl the best life possible. What brings me peace is knowing that, for right now, this works. How do I know? I have an 11 year old special girl who says she is happy and really likes herself.

Like any good magical wizarding story, this one will have twists and turns, victories and defeats. Although I have more data, blogs and Facebook groups than I did 11 years ago, I still haven’t found a book that tells me what to expect in the future. What guides me, what has always guided me, is a promise I made to a 4.5-pound, eight weeks early baby in the NICU: No matter what, we’ll figure this out together.

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Getty image by evgenyatamanenko