The Difference a Lifeline Can Make for Special Needs Families

A lifeline can come in many shapes and forms. In this instance, I’m not referring to one on a game show where you call a smart friend and they help you with an answer.

I’m speaking of the ones that improve the lives of special needs families. Sometimes these lifelines come in the form of organizations that provide services and care.

A great event lessens the stress

A few weeks ago, my family had a blast at our first drive-in theater experience. The event was planned specifically for special needs families.

Activities like the drive-in theater are due in part to organizations like Families Of Children Under Stress (FOCUS) that serve the metro Atlanta area where we live.

We don’t always stay the entire time when we attend events. But I’m so excited that we made it through the whole movie that night. If we hadn’t, we would have missed the beverage and snack cart that was rolled to our car.

We were greeted warmly by the staff and settled into a cool summer evening. Even with great planning, I never know what to expect when we venture out for a family outing.

Sometimes heading out with my daughter Juliana is easy. Sometimes it’s much more challenging due to the anxiety that Angels may experience.

This evening was a good adventure and one of the best times we’ve had out since the COVID-19 pandemic began. Of course, what’s not to love about an evening with your favorite people, the cool outdoors, and a bounty of snacks?

They get what you’re going through

This was not our first rodeo with FOCUS. I’m probably biased, but in my opinion, their team provides some of the best special needs family events and services in the Atlanta area.

Several years ago, when we first got involved with FOCUS, I was so impressed with the organization that I interviewed two of their executive team members. I just wanted to know more about the people that coordinate all these fantastic things for my family.

From left, former FOCUS staff members Lucy and Elizabeth. (Courtesy of Sabrina L. Johnson)

Having lifelines like FOCUS is so important. What I enjoy most about attending an exclusive special needs event is that everyone around me understands what I’m going through each day.

If Juliana has a bout of screaming, no one raises an eyebrow or gives us a confused look.

Sure enough, this is exactly what happened during the drive-in movie when I had to change her seat. Her displeasure played out in an outburst of really loud screaming and tears.

But the mini tantrum quickly passed and it was smooth sailing from there on out.

Baby, you’re a star

In addition to the drive-in and other events, Juliana has attended the FOCUS special needs camp since she was 6 years old. One of the best parts of this experience is the greeting.

With the idea that everyone is a star at Camp Hollywood, campers receive cheers and praise from the staff and student volunteers when they arrive for the day.

Juliana holds her dad’s hand while heading home after camp. (Courtesy of Sabrina L. Johnson)

Several years ago, we also had the privilege of an exclusive aquarium visit through FOCUS. The entire Georgia Aquarium was closed for a morning and a flood of special needs families explored the ocean scenery during the private event.

Focused on praise

This spring we visited the aquarium again on our own. It was a fun visit, but we certainly missed all of the perks and special treatment that are part of FOCUS gatherings.

The extra miles create a noticeable difference, and it makes me appreciate FOCUS’ efforts even more.

While not every city has a FOCUS, there are many organizations out there working hard to support special needs kiddos and their families.

When I meet families like mine that live in the area, I ask if they are plugged in with FOCUS. When I meet families outside the Atlanta area, I make sure to direct them to the FOCUS website.

To say that I’m grateful to organizations like this one is an understatement. I’m so glad for lifelines that bring fun, hope, and comfort to my family.

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Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.