Category Archives: communication

Special Siblings

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As many of you know, I have a favorite daughter. It’s not just that she shares my love of Anthropologie and Madewell or that it’s fun watching her excel academically.  I’m in awe of her strength and resilience and her ability to know what people around her need — especially her brother.

When Jack first got diagnosed, Anna was six years old. Our family changed overnight. Her life went from an idealic suburban childhood to her family scattering. We were completely focused on Jack – getting him treatment — saving his life. I don’t really remember much about what Anna did that summer. I know she took some classes at a local camp and that friends included her on many fun summer activities. Ivete arrived from Brazil. I’m not even sure how that happened but we will forever be grateful to her.

Sometimes at night while Jack’s hospital room was quiet, my mind would have a moment to think about something other than blood counts and GVHD testing I would wonder how Anna was coping and how all these changes were going to affect her life. Our nurses allowed us to bring Anna into Jack’s isolation room and turned a blind eye when she would spend the night. She and I would order delicious Dominican food, watch High School Musical and fight over my favorite blanket. There were times she would have me hold her tight and whisper questions she was scared to ask.

Dan and I agreed that we needed to be honest with her. She had lost the luxury of innocents. 

And that summer was just the beginning. Jack came home and his life had changed dramatically, and it meant that all of our lives needed to adjust.

I know we should have done more for Anna, but those of you have gone through ALD (or any other complicated medical or emotional issue) diagnosis or treatment or the aftereffects – you know that the needs of the other kids in the family sometimes get lost. 

Anna has thrived in her life and so many of the special siblings I’ve come to know over the years have also been quite remarkable. I’ve wondered what helps them and what can hurt them. I spent much of my time in graduate school researching these special siblings and appreciating that there is so much we can’t control when going through these complicated times BUT there are some things that we as parents/grandparents/friends can do to help these kids.

ALD Connect has recognized the importance of these special siblings and asked Anna and I if we would host a webinar discussing the topic. Once our community discovered we were working on this project, I’ve heard from countless people sharing their stories. Newborn screening families, early diagnosis, late diagnosis, siblings of folks with AMN and siblings of women with our disease. We are doing our best to represent all potential circumstances, but also hope to have time for discussion during the webinar. Time to learn from other families.

Please consider joining the Webinar this Wednesday at 7 pm. I hope this is the first of many.

CLICK HERE to register for the event.

Love, Jess

New Tricks

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I often chalk stuff up as a happy accident or a funny coincidence when Jack has a new trick. It’s not that I’m not proud of our boy or that I don’t pray with every ounce of my soul that he will make improvements and develop new skills. I’m just being careful. It’s my way of protecting myself from disappointment. For years, I would see small successes and think it was the beginning of a huge transformation. I was often left disappointed when a new trick vanished as quickly as it had arrived. So I’ve learned to focus on and celebrate what Jack is doing well and consistently.

Over the years there have been some things that have proved to be more than a trick. Jack relearned how to walk with purpose, eat solid food, hug. A few years ago, after being told repeatedly from the folks at his high school that Jack could read, I watched as Jack pointed correctly to a word on a sheet of paper. I paused and then pushed down the excitement, reminding myself that he had a one-in-four chance of choosing the right word — not crazy odds to have guessed the correct answer. Then he did something similar the next day. I tentatively held up word after word to test the skill. I was delighted — and shocked — to see that his teachers were right.

Lately we’ve witnessed another new skill that at first had us laughing.

Last week I got a flurry of text messages from friends asking me what was going on? “What are you saying?” “You okay?” “What’s THAT photo?”

When I scrolled through our correspondences, I saw odd comments and strange photos. I couldn’t figure out what was going on — had my phone been hacked? And, then I saw something that solved the mystery. A large nose.

It was Jack.

I went into the bathroom where Jack was sitting on the toilet with his iPad on his lap. Jack isn’t consistent with his toileting and we find that if we sit him for a bit every few hours we can often save a diaper (adult diapers are about $1/per — and we are cheap). We sit him with his iPad so that he can stay entertained AND stay seated (he has startled more than one guest over the years by walking out of the bathroom with his pants around his ankles).

After the random texts, I realized that Jack’s iPad is linked to my phone and that he was writing to people. How on earth? He must have just been lucky as he hit some buttons.

Then it happened again. And again. Apparently Jack likes texting and sharing photos of his nose and thighs (thank goodness it hasn’t been of anything else).

Then this morning I heard Anna’s voice coming from the bathroom. Having just delivered her to Baltimore, I wondered how it was possible until I walked into the bathroom to find Jack smiling at his sister’s face on FaceTime. Apparently he doesn’t just like to write notes.

So folks, I need to apologize in advance for any odd correspondence you might receive from me. It wasn’t a butt dial and I haven’t been day drinking. It’s just Jack saying hello.

AND, if you get any photos . . . I’m really, really, really sorry. PLEASE do not alert the authorities.

Love, Jess

Progress? This might be the key(board)

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Jack’s progress doesn’t always follow a straight path. Brain injuries are complicated, and sometimes things move forward and then backward. Sometimes even sideways. It’s only after months of consistency with something new, that we feel comfortable that it’s here to stay. Perhaps that’s why I waited to share this story. But just this week I was given more proof that Jack has found a new skill. Typing.

I will start at the beginning.

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Jack has been using an app called Proloquo2Go for 6 years. It’s a communication program that uses words and symbols that when touched, speak for him. Every speech therapist Jack’s had since he has gotten the app has been excited by the possibilities and worked with it hoping to make communication easier for our boy. Each therapist has played with the format on Proloquo2Go —making words/symbols bigger on each page, making words/symbols smaller again, limiting the amount of information, increasing the amount of information, etc.

There’s always hope, and there have been times over the years that we have seen some improvement, particularly at school (like all kids, Jack does more at school than at home). Although there have been some successes, I’ve never been 100% convinced that his “successes” haven’t been a little guided. When Jack uses his iPad he needs someone to support his elbow — it helps with accuracy. I’ve always worried that his guides might be guiding more than they realize. Like when you use a Ouija board and subconsciously you direct the movement (unless the spirits are really sending subtle notes like GET OUT to every teenager who has ever played with a Ouija board).

This summer, Jack’s speech therapist added a keyboard page to the Proloquo2Go mix. I thought she was reaching a little. If Jack can’t consistently articulate a sentence when given entire words, then how could he manage to type in a whole word? But, instead of arguing, I said what I usually do to his eager, optimistic team, “THAT sounds awesome!”

All summer both Jack’s aide, Monica, and his therapists swore that they were seeing improvement, but I didn’t pay much attention. Until . . .

Last month, Monica took Jack on an adventure to pick something out for his birthday. As they wandered through the mall to find the perfect gift, they walked into a store that had a large selection of socks. Socks are the new cool thing for teenage boys, and Jack seemed excited to take a look. He searched through the rack of socks before grabbing a pair that had a pattern with something that Monica didn’t recognize. She said, “Jack, do you know what that is?”

Jack smiled and nodded his head so Monica took out his iPad and asked him to spell out the word. This is what he wrote:

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Marijuana has helped Jack so much for the last year and now it’s helping prove to the rest of us that Jack’s progress is real!

I loved this story, but I tried not to get too excited. At home, Jack focuses very little on the keyboard page on Proloquo2Go and more on the I’M HUGRY and I LOVE YOU buttons (that’s a good one). I’ve been waiting for more proof that the keyboard might really be the key to something. I finally got some proof this week. Jack’s speech therapist sent me a note sharing with me that she was telling Jack a joke and handed him his iPad for a response. Jack typed “LOL”. Maybe not as impressive as “mariguana”, but I will take it!

Love, Jess

* Monica is not just Jack’s aide. She’s his school mom and my dear friend. And Caitlin is Jack’s therapist who cracks jokes and makes magic happen.

* Okay folks – laugh all you want. I know that it’s funny that MY son has taken up  a hobby that involves spelling. I’ve confused pallets with platelets and angels with angles and wander with wonder. I’ve never claimed to be a good speller and apparently Jack hasn’t perfected it either – but we both get our point across.

 

 

 

Love That Max

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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 CNN.com, Today.com, Yahoo, The New York Times’ blog The Motherlode, AOL, MSN.com, MTV.com 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

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