SELLING YOUR CHILD: The One-Page Profile

I think my son Jack is amazing. Getting everyone else to notice and understand him is a different story.

Up until a year ago, we lived far away from our extended family. Our individual family was used to dealing with Jack on our own. Since there wasn’t a whole lot of in-person contact with family, there wasn’t much need to explain his behavior, strategies and the why behind them.

“Watch out cousins, your creations are about to be destroyed!”

Then we moved into the lively chaos that is extended family. Not much was mentioned about him as we got settled; I just watched him to see what would happen. Aaaand I quickly began to see a lot of frustration between cousins. Jack doesn’t know how to play properly. A specific example is when others are building Legos: it becomes his mission to frantically pull them apart. This is a major concern to serious building cousins. There were a lot of tears shed and many words yelled, yet Jack had little idea of why everyone was so upset.

It was time for an explanation, for everyone. I needed to take a step back from what I instinctively do for Jack and think about how to educate others on how I want them to interact with him. My sister had asked me a long time ago for a “cheat sheet” about him for a family reunion. Then I remembered the idea of the One-Page Profile. My wheels started turning. I’ll get back to the family story in a bit…

The One-Page Profile

I was introduced to one-page profiles through Tri-Counties Regional Center, the agency that diagnosed Jack and provided services for us in California. They even made one for us after a check-up interview:

A page about Jack (age 4, two years ago)

These profiles are generally created about those who need to be understood and receive extra support. If you search “one page profile” on the internet, you will see many examples. They can be very fun and colorful. Many include their picture. One of my sons came home from his typical class with a cute page about a girl with down syndrome who participates in parts of his class. It was very helpful for him to know who she is, and for me as a parent to be aware of his peers.

Jack’s school portrait is perfect for a one-page profile.

Common sections of the page are:

1. The person’s positive qualities
2. What’s important to him or her
3. What support is needed for success

A profile is helpful to give a person a voice, who might not be able to communicate well otherwise.

It also helps paint them as a person, so they are not just known as ‘the boy who throws tantrums in church’ or ‘the girl who flaps her arms when she’s excited’. The reader can understand how great this person is, plus recognize the challenges they are dealing with and what can help. Hopefully, some real connections can form because of a write-up. Right now in my searching, I found a promising resource to help others write a one-page profile. I haven’t used it myself, but it might be very helpful.

The “Tip Page” Option

…Back to my family story. Well, maybe I could have used the above resource, because when I sat at my blank computer screen to create Jack’s profile, I just couldn’t narrow him down enough. I finally decided to think through different scenarios and write little snippets about them. I called it ‘Jack Tips’.

And so, today I share a kind of alternative one-page profile option. I’ll call it a “Tip Page”. This page (which is front and back, but hey it’s still a page!) is to explain behaviors that occur often and how we react to them, so that others can understand what’s going on. It was important to me to have a helpful tool to hand to a family member, friend, babysitter, or someone who wants to meaningful contact with Jack so that I didn’t necessarily have to be involved. Other than family, I have sent this document to his summer camp counselors and church teachers and I leave it sitting out for babysitters.

So, let’s get to it. Here are a few of the examples of the “Jack Tips” that I shared with my family a year ago:

• Simple language works best with Jack, especially when telling him to do something. Examples are easy phrases like “all done, screens off, pick up, time’s up, your turn.”
• When Jack is asked if he wants something, 99% of the time he will say “yes”. So to get a more accurate answer, phrase the question differently, such as, “Jack, do you want a sandwich yes or sandwich no?”
• He loves watching moving objects, such as something spinning or flashing or opening and closing. If he is not paying attention to you, it helps to look for what he might be focused on, acknowledge it, and then let him know that it is ok (if he is scared) or that it’s time to move on from it.
• Jack loves singing. You can bond with him by singing a common preschool or church song with him.
• Jack responds very well to timers. He needs a warning that something is going to end and then set a timer (if you can) and let him hear it go off or let him know that time really is up.
• When eating, Jack generally stuffs his mouth beyond capacity. I try to cut things up in manageable pieces or remind him to stop (or physically stop him).
• Jack just melts with calmness with a head or back scratch or rub. If you’re willing and able, you totally have my permission to give him a back rub. He will love you.

Wow, in copying and pasting these from my document, I realize it’s time to update it! He’s made a lot of progress and some of these things aren’t necessary anymore. I’m so glad this is recorded; what a great measure of progress!

I think that ideally, you would write both: a quick, easy to read, easy to hand out to anyone one-page profile AND a detailed list of tips for those with more contact with your child, such as a teacher or babysitter.

Start the Conversation, With Adults AND Kids

Jack is conspicuously absent from most of my cousin pictures! Here (with his back to us) he plays with his cousin closest to his age.

At a family gathering I was able to hand out these tips and we had a discussion about Jack–with his cousins involved. I try really, really hard to not use the word ‘special‘, because I don’t want any kid to think, “why is Jack special and I’m not??”

I simply explained that he thinks differently and sometimes he doesn’t understand, even when you think he should. He needs good examples of how to do things or behave properly. To help give a concrete view of why he might respond differently than expected, I said at the time that ‘he is 5 years old, but he acts more like a 3 year old.’

It was a good conversation. This open communication and education, along with time, has helped tremendously with interactions involving Jack. Sure, it’s still annoying for kids to play a game when Jack isn’t playing correctly, but at least there’s some understanding. And all younger cousins are irritating at times anyway, right?

>> I encourage parents of kids with disabilities to try writing a One-Page Profile and/or Tip Page to give others a chance to understand them. It will be a helpful addition to your ever-expanding parenting tool belt. <<