Neverland Without a GPS

All parents are partially ruled by fear for their child’s safety. Every special needs parent shares a unique fear: what would happen in an emergency if I wasn’t there to assist my child and spout off the two pages of medical facts that are constantly updated and stored in my brain? I can only imagine that Caleb would be terrified and that his fear would compound his low verbal level and lead to either a meltdown by him or utter helplessness for those trying to help him.

Years ago, I purchased an alert bracelet for Caleb with a phone number someone could call to learn all of his medical information. The bracelet mentioned that he wouldn’t be able to communicate his pain level or any of his medical history. Sensory issues made this, and the following necklace, unbearable for Caleb to tolerate.

I started keeping a two-page document in my glove box, but that assumed that the glove box would be searched or that my incapacitation would be limited to a car problem. Caleb doesn’t carry any identification, so he is vulnerable wherever he goes. What if something happened on the bus home from school? Or on a field trip? Or if we were separated somehow in a crowd?

In the interim, I have lived with the fear of what could happen to my precious son if I wasn’t there, or wasn’t conscious.

A few weeks ago, a friend re-posted a Facebook post by a woman named Denise Beasley Carter who runs a Facebook page called And Then They Grow Up. Ms. Carter had actually gone through the nightmare so many of us fear. She was in a car accident with her adult, non-verbal son who has Down Syndrome and Autism. Ms. Carter was trapped in the car and was unable to speak for her son right after the accident. Thank God they were both okay, but the incident led her to consider designing a product that could help in similar situations.

Then she found ifineedhelp.org. This 501c3 non-profit organization was founded by Bruce and Erin Wilson, parents of a 13 year-old son with moderate to severe Autism and very limited language ability. Their son had been lost a few times and they knew they needed to create a product that would help him and others like him. They are both wonderful to work with.

Through the years I have met several families whose kids with Autism will suddenly bolt from home. These kids are lightning fast and often run through the backyards of neighborhoods, not along sidewalks or roads, so they can be lost in an instant. One friend found her son several blocks away in an unlocked car he had found. He promptly locked the car and fell asleep. Another friend’s daughter left their home one day, trying the front doors of all the homes on their street until she found an unlocked one, entered the home and went through the house and entered the backyard pool. She couldn’t swim, but thankfully she was found before any injury occurred.

The beauty of ifineedhelp.org is that they offer many different products, such as t-shirts, patches, pins, clips and shoe or dog tags. Each item can be personalized by the purchasing caregiver. I bought the shoe tags because they will pose no sensory issue to Caleb. The metal tag has his name, my phone number, his father’s phone number and a code that can be scanned by any smart phone equipped with the free app QR Reader. If someone doesn’t have the reader, they can go to the website and enter the numeric code on the side of the tag, which will pull up all relevant information. There is also the ability to send an emergency email if necessary from the site.

The site also features car decals, key chains and a wonderful two-sided door lock that would foil the most skilled of our incredibly bright children.

For Caleb’s shoe tag, I entered the highlights of his medical conditions, including the fact that he wouldn’t be able to communicate how he’s feeling. I also included allergies as well as current medications and dosages. With my password, I can edit the information at any time so it will always be the most up-to-date.

I have been talking with so many families since I found out about ifineedhelp. There are so many more implications for this groundbreaking product. A preschool teacher of typical children told me she wants to share the information with the parents of her students. A woman whose husband is in the advanced stages of Alzheimer’s disease said she wants to order tags for his shoes. The tags would accelerate help for anyone with non-obvious medical needs such as diabetes or seizure disorders. I’m remembering a fifth-grade field trip for my daughter’s typical class where the tags would have been incredibly helpful.

I am hoping that, through the generosity of Huffington Post and other websites where I post this blog that we can encourage all first-responders to automatically look for these tags.

I have always told every doctor who has treated Caleb that I am his voice. Now there is a wonderful array of products that will be able to speak if I cannot.