Love That Max

Love That Max is a blog I’ve followed for years, and I am not alone. The blog is currently the #1 disability blog by traffic ranking and a Babble Top 100 Mom Blog. It has been featured on,, Yahoo, The New York Times’ blog The Motherlode, AOL,, and The Daily Mail, as well as in Redbook, Real Simple, Parents, Good Housekeeping, Woman’s Day, Family Circle and All You magazines.

Ellen Seidman is an incredible writer and an inspirational mother to her three children. I’m honored and excited that she shared my piece, When my son communicates, will he share our secrets?.

Please take a peek and cross your fingers that Jack doesn’t have any secrets about you;-)

Love, Jess




I said in my last post that progress doesn’t always follow a straight line, but it looks like Jack may be full steam ahead with his latest accomplishment. We call it WHITEBOARDING!

We present Jack with a question (either verbally or in writing) and write three choices on his whiteboard. He circles his answer. His circles can be a little haphazard, but they’re legible enough to be clear. We’ve asked questions that have specific correct answers and questions that provide Jack with a decision. He’s able to answer everything without any trouble.

It’s remarkable, but we’re still quietly clapping (although we are chilling some champagne). We just want to see if Jack’s brain continues to cooperate with his new skill. And, I’m a little nervous that Jack is being so nonchalant about his new ability – as if he’s done it forever. He’s potentially just broken down his biggest barrier, and he’s acting like it’s no big deal. My only explanation is that not talking hasn’t really bothered him too much.

Everyone else, of corse, is thrilled by the idea that Jack is gaining a voice. The doors that could open for our little man are endless. He can tell us how he’s feeling and what he wants to do. He can be part of the conversation.

My only complaint is that I now feel obligated to ask all three of my roommates what they want for dinner. One luxury of having a silent child is that I could make some decisions for him. Going out for meals has been especially fun, “I will have the spinach salad with the dressing on the side. My son will have the bacon double cheeseburger with a side of french fries.” There are NO calories if you don’t order it for yourself.

8 things we’ve learned this week:

1. Jack can absolutely read. We’ve been making him prove it all week long.

2. One Direction is his favorite band. Better than The Beatles, The Grateful Dead, and The Stones (Dan is a little upset, but he’ll get over it).

3. Jack still prefers waffles to pancakes, and does NOT like eggs.

4. I leave him on the toilet too long.

5. He’s done watching anything having to do with “Real Housewives.”

6. Jack knows who “Bad Dog” is.

7. Victoria Justice is cuter than Zoe (from Zoe 101), but he still loves Zoe.

8. He wants a tattoo and an earring.

This morning, as Jack and I sat on the front stairs waiting for the bus, I wrote, “How do you feel about your whiteboard? Love it, It’s okay, Sick of it.” He looked at me, laughed and circled “Sick of it”. Then he threw his arms around me and gave me one of his killer hugs. Sorry Jack, but this one is here to stay (I hope).

Love, Jess

quietly clapping

As I looked through Jack’s backpack on Friday afternoon, I found a small whiteboard and a note from Monica (Jack’s school aide/school mom). She said that she had bought the board for Jack thinking it might be interesting, “He’s doing great answering questions. He’s so smart!”

I almost ignored the note. We get a lot of “great ideas” here at 26 Clinton Avenue, and most end up being less than successful experiments. The whiteboard lay on the kitchen island until later that night when Dan and I finally tried a few simple “yes” and “no” questions. Jack quickly and clearly circled the appropriate answers. We were impressed, but got distracted and didn’t think too much about it. Saturday we tried again with Anna, and she didn’t give her brother an easy time. She started asking questions, requiring Jack to read the options himself before circling the correct answer. Question after question he answered them all without hesitation. Eager to test how much he was reading, Anna took it a step further. She started writing out the questions silently. No hints or help. Jack didn’t miss a beat. He’d look at the question and circle the correct answer.

Over the last eight years we’ve seen hints that Jack could still read, but we had no idea to what extent. Until now, his fine motor skills have prevented much progress with holding a pen. Even something as simple as a circle was out of his reach. Now, Jack might not need to relay solely on his smile to get his point across. He may finally have access to words. AMAZING! Jack being able to tell us what he wants for dinner OR how he’s feeling OR what hurts. The possibilities are endless.

We’ve shared this update with some friends and family and the news has been greeted with high-fives, tears and hugs. Everyone knows that communication has always been on the top of our “wish list”. I think people have been surprised by our calm demeanor while describing this new milestone. I know we should be opening the champagne and dancing in the streets and we will – in time. We’re simply being careful. It’s self-protection.

Progress doesn’t always happen in a straight line and for people with ALD the road can be particularly inconsistent. ALD can tease you with progress than steal it back without explanation. This makes celebrating successes a little nerve wracking. Our family braces for good news as much as we do for bad news. I think every day that Jack is able to repeat his new trick/mind blowing triumph, we will feel a little more confident about celebrating. Until then, we are quietly clapping, dancing and doing summersaults.

Love, Jess

Our family has tried EVERYTHING to help Jack access language. It’s amazing that something as simple as a little whiteboard might be the start of a new chapter. Monica – we love you!!


Jack didn’t miss a beat answering this one!


Anna left this for Jack earlier today. He didn’t hesitate.