My Child Has Special Needs

Coping with a diagnosis.

I sit here not knowing how to start. I figured if I just write the way I feel, I could share some great information for parents who might benefit from my family’s story. It’s a story of real hope and an amazing little girl who has taught everyone around her that she is a bumblebee. The reason I call her a bumblebee is because according to physics, bumblebees are not supposed to fly. But they do. So does Hannah.

When you are blessed with a child, you think about all of the fun you will have nurturing your baby and teaching your child everything you know. Then sometimes you get a wake-up call that stops you in your tracks— a flu, a missing milestone or, in our case, a diagnosis of something you never knew existed.

We noticed around 5 months of age that our daughter was beginning to clench her right hand. When we met with a specialist, our thoughts were confirmed. There was a problem. (Now before I go further, I want you to know that Hannah is a happy, healthy, communicative child. She runs around the park, makes friends and causes mischief, like most girls her age. So if I share a moment that may shock you, please remember that my daughter is a bumblebee.) The specialist recommended an MRI, which revealed Hannah had suffered a stroke. At that moment, fear overcame us. But we decided very quickly to help Hannah recover and even excel in her everyday life.

We chose to be extremely aggressive with Hannah’s daily activities. I committed to overseeing this around the clock. I left my job as a head hunter who had spent the last ten years working with professionals at the chief executive level. And I became immersed in the New York City subculture of stay-at-home moms. I made sure we had a strong support system for helping Hannah to thrive. A big part of that was finding supports for us, Hannah’s family.

Does this sound familiar? Perhaps you have a child with special needs. I want to share what worked for us. I hope it will support you and your family.

Consider religion.

You gravitate toward religion when something happens to your child. Even if you are an atheist or agnostic, I strongly recommend you have faith. Believe that with your determination and focus, you will provide the best support for you and your family.

Be patient.

People will share what they feel is helpful. They will want to try and fix your child’s challenge for you. They will also begin to tell you absurd tips. Take these with a grain of salt, pondering the advice if you think it might prove useful.

Voice your concerns.

You are you child’s best advocate. Just because someone from the medical profession has diagnosed your child with an illness or a challenge, go get a second opinion! I am serious. You need to make sure you understand what the specialist or doctor is saying and reconfirm everything. Do not hand over your child’s well-being to anyone. That little person is your responsibility, and you need to trust anyone wholeheartedly.

When you begin to work with a program such as Early Intervention, which I think is amazing, do not shy away and pass the baton to your sitter or therapist. Get involved. I realize sometimes parents feel they should be making a better life financially for their child. However, trust me, being part of the developmental process will far exceed any new materialistic things you can provide. When children on the autistic spectrum or diagnosed with a mobility problem come to my yoga class, they thrive with their parents. When a sitter or a therapist accompanies the child, the child tends to resist the activity. Mommy and daddy motivate kids in a different way. This is a good thing.

Engage.

Discover what engages your child the most. Music, art, gym, reading— many of these things foster your child’s learning and development. As long as your child is engaged, he or she feels motivated to interact with whatever activity is enhancing his or her development. It is like when I played the cello as a child. I loved the cello. I yearned to play the instrument, though it took incredible practice. I didn’t wake up one day playing the cello. I practiced, stayed motivated and enjoyed the process of learning.

Reflect.

You must always look at your child like the first day you found out that you were becoming a parent. Have that same joy inside of you, and your child flourishes. Who cares if it takes your child longer than other children to accomplish something? Your child is striving to tackle new feats, and needs you to be the biggest cheerleader.

Realize that everyone has something.

I can’t eat peanuts. My brother is diabetic. What I am trying to share is that everyone has some cause for concern. If your child is diagnosed with a challenge, and you reconfirm it through a second opinion, then focus on how you can best support yourself and your family. You will learn more about yourself once you take ownership of the process of dealing with the diagnosis. You will even want to share how your successes can help others. People need to hear, see and read about hope. We all need it.

Find alternatives.

Come up with ways to add complementary activities to your child’s day. Some children will be booked solid with therapy. Others will have a temporary intervention of therapy. Either way, begin to try alternatives such as yoga, swimming, taekwondo, learning an instrument or even a new language. It is up to your child to decide what to continue pursuing. However, you should show your child what options exist.

From a parent of a child with mild cerebral palsy, I believe you will be fine. Your child will be fine. It is up to us as parents to uncover what fine is.