The proverb “It takes a village to raise a child” is never truer than when it comes to raising our children with Fragile X syndrome. In many cases, we need a community to look out for our children all their lives.

Think about your current community – where you live. You have your family, some neighbors, a few friends, and some of you may have extended family living near you. I want you to think about adding another group of people to your community: Your local firefighters.

I never thought much about them until my son, Ian, took an interest in them. We visited them for the first time when Ian was three years old. I thought, “Oh, we will do this every few years, just because of Ian’s interest in them. “I never imagined where this interest would lead – who I would meet and what I would learn.

Our Fire Stations

034In our city and in many others, firefighters are the first responders when 911 is called for fire or medical reasons. That means they are usually the first ones on the scene. At least one fire fighter is a paramedic and many have EMT training. If you see one truck, it is a medical emergency; if you see two or more trucks, it is most likely a fire.

We have seven fire stations in our city (of 100,000) and they are spaced geographically to provide fairly even response times across the city. The response time to our house is roughly 90 seconds. We know that because we had to call them once when Ian broke his ankle.

Our stations have three crews and the firefighters are on a 48-hour rotating schedule. Over the years, we have visited all the fire stations in our city, many of them more than once. We have met most of the firefighters, and they have all gotten to know Ian. Most importantly, we learned they all like home-made chocolate chip cookies.

How We Use This Information

  1. Landmarks: Since Ian now knows the location of all the fire stations in our city, we refer to them when we go places in the city. One of our favorite bagel shops is by Station 1. Our favorite taco place is by Station 2. Our favorite swimming pool is by Station 3. You get the idea. But if we ever go to a new place in the city, we tell Ian where it is in relation to the nearest fire station. It has come in very handy.
  2. Learning Handy Skills: The firefighters give Ian a calendar each year that shows which crew is on each day. Ian looks at this calendar every day to see which crew is on duty. Through this repetition of daily review, he now knows the names of all the months, he understands the concept of a week, and he knows all the days of the week. He is starting to understand events that are two and three weeks out. It has been a surprising benefit of this calendar.

Why you should Visit your Local Fire Station

  1. I think it is important that both you AND your children meet the firefighters in case they have to come to your house for an emergency. Have the firefighters show your children what they might be wearing when they come to your house, and have them show you their truck — they will most likely let your child sit in the driver’s seat!
  2. Ask the firefighters to flag your house on their 911 system and include a note that says something like “A person with a disability lives in the house. His/her name is _________. His/her bedroom is located ________________. He/she may have unpredictable behavior and may not understand what you are asking him/her to do. Talk in as calm a voice as you can.”
  3. The firefighters often shop at the local grocery store, so as your child ages, he/she may see them at the store. The firefighters also do inspection of businesses in your area, so your child may see them doing a variety of activities. As your child grows up and starts to do more on his/her own, they are one more group of people who will look out for your child.

Another Piece of Advice

116I saw one of our local firefighters at our grocery store one day and he asked me about Ian’s condition. I told him that Ian had Fragile X syndrome and the firefighter asked me if he had any medical conditions associated with it. I told him no, but I did mention that he takes a medication. I also told him that Ian had a card in his billfold that stated his name, age, medication, and emergency contacts.

The firefighter told me that if Ian has a medical condition- such as seizures, or an allergy, like to latex gloves – that I should get him either a necklace, some dog tags or a bracelet with this information on it. In an emergency, the first thing they look for on someone is to see if they are wearing some sort of necklace or bracelet with medical alert information on it. He added that it is nice to know what medication(s) a person is taking.

He said they would eventually look in the billfold, but if there is something that medical professionals need to know right away, get a necklace, dog tags, or a bracelet.

Final Thoughts

Even if your child does not have the interest in firefighters like my son, get to know them. You never know when you are going to need them, but it is nice to know they are there. If the firefighters have some information about your child and your family, it will make any emergency go more smoothly. And you’ve raised a little awareness about Fragile X along the way.

One more thing – firefighters are some of the nicest people you will meet in your entire life. They have embraced Ian in ways I never dreamed; I have a hundred stories that would warm your heart. They are amazing.

Now, go meet them, and send me pictures. 🙂

Thank you Boulder Fire-Rescue!

Author

Jayne Dixon WeberJayne Dixon Weber
has been a member of the NFXF team since 2007 and currently serves as the director of community services. She has two children—one, an adult son with Fragile X syndrome, the other, a daughter who is an occupational therapist – and she has one grandchild. In addition to assisting with the development of the NFXF’s Adolescent and Adult Project, Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. Jayne likes to read, enjoys photography, and goes for a walk every day.


Feel free to send me your questions at treatment@fragilex.org. I’d love to hear from you.