THE POWER OF A LABEL

When my son was first diagnosed with his rare genetic disease, a woman on social media mentioned me in a comment and called me a “special needs mom.” I read those words with my tiny newly-diagnosed infant on my chest and broke down.

I quickly became aware of labels and the power they can both give and take away. It never crossed my mind that every “special needs mom” I had come across in my lifetime had never labeled herself. She was given that title. The title was likely weighted with grief and disbelief. And once she took the focus of the label off herself and put it on the new responsibilities given to her, she likely wore that label proudly; I know that I do.

Now What?
When my son was hospitalized during his diagnosis, I literally Googled the words “Diagnosed with Tuberous Sclerosis. Now what?” I was lost. I was expecting a packet, or a pamphlet with information, or a handout of some kind. I hadn’t yet felt scared or overwhelmed; I simply felt alone. I felt like I needed a hug and guidance. Now that it’s been a few years, I can look back and see what I should have done differently when navigating my new path with my son.

Disability does not mean that your child cannot learn or be educated alongside peers without disabilities. Disability does not mean that your child will not have the life that you dreamed of them having. Disability does not mean endless heartache, even though your heart may feel shattered right now.

Where To Start
In the beginning, when so many different feelings are affecting your thoughts and emotions, there is no way to measure how intensely a parent may experience their newfound path. I felt like my world had come crashing down; almost like I was living my life in slow motion.

For the newly labeled mom, I think it’s important to know where to start.

My first recommendation is to find another parent of a child with a disability, preferably one who is willing to speak candidly about the emotions they felt during their own experience. You can also look into “parent to parent” programs that may be local to you.

Rely on as much local support as possible for positivity. Hopefully, there’s a close friend that can simply be there for you, sit with you while you cry, hug you, high-five you when you start to look at the bright side… any positivity you can physically be around is important in the very beginning.

Fears of the future can immobilize you. Worrying about the future will only deplete your limited resources. You have enough to focus on; get through each day, one step at a time. This is the best time to fine-tune your faith if you have religious beliefs or jot down some daily affirmations to avoid focusing on the fear of the future.

“When my son was hospitalized during his diagnosis, I literally Googled the words “Diagnosed with Tuberous Sclerosis. Now what?” I was lost. I was expecting a packet, or a pamphlet with information, or a handout of some kind.”

Questions
When you are introduced to new terminology, you should not be hesitant to ask what it means. Whenever someone uses a word that you don’t understand, stop the conversation for a minute and ask the person to explain the word. Medical terminology can become daunting very quickly. Ask. Ask. Ask.

Many parents feel inadequate in the presence of people from the medical or educational professions because of their credentials and, sometimes, because of their professional manner. Do not be intimidated by the educational backgrounds of these and other personnel who may be involved in treating or helping your child. You know your child best, and you’ll be surprised how quickly you become a pro with the diagnosis your child has. Professionals will be asking for your input in no time.

Embrace Your Emotions
So many parents, especially dads, repress their emotions because they believe it to be a sign of weakness to let people know how they are feeling. While you navigate your new journey with your child, it is important to focus on your emotional health. Some days will seem incredibly wonderful, and some days will seem incredibly difficult. Let your emotions out, and you’ll find that you have more time to focus on staying positive and being the best parent for your child.

Eventually, you will be standing taller with endless resources, a wonderful support group, affirmations that ease the daily stress, and a wealth of knowledge that you didn’t expect to ever know. You’ll be a pro at finding programs for your child, at seeking the emotional support that you crave, and at being the very best version of yourself. Give yourself time. It all falls into place, and before you know it, the self-doubt disappears and your strength overcomes everything. I know it seems terrifying right now, but you are not alone.

You are a special needs parent — one of the best labels in the world.

MEET OUR COLUMNIST, GRACE

Grace’s unique journey has inspired her to speak from the heart, sharing her struggles and strengths. She is a domestic violence survivor and single mom of four, her youngest living with Tuberous Sclerosis. Despite these hardships, Grace always manages to find positivity and humor in life’s everyday challenges. When she’s not writing engaging and oh-so-relatable columns for The UpBeat, you can find her snuggling with her babies or constructing something fabulous with either a sewing machine or massive amounts of dough and a pie pan.