Tag Archives: special needs family

Thanks for including me JackO

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I was shaking when Dan, Jack and I arrived at Jefferson School this morning. I’ve been a teacher most of my adult life, but that doesn’t mean I’m a natural at public speaking. Standing in front of twenty students and a pile art supplies is WAY different then standing in front of over a hundred people with nothing but some notes and a copy of Smiles and Duct Tape to protect me.

I’ve now had a few opportunities to speak in front of audiences. I keep thinking it will get easier, but I still feel the adrenaline racing threw my blood and every bit of my body trembling. I wonder if that ever goes away . . .

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Luckily, this audience was kind.

There were a few familiar faces in the crowd, and I could see Jack and Dan sitting in the back of the library. Their smiles always give me strength. So, once the kids arrived and settled themselves in their seats, I dove in and the talk seemed to go well.

When I was approached about talking to this group of fifth graders, I wondered what I would talk about. February is “Kindness” month at Jefferson. I am pretty nice (unless you bring out the Scorpio in me), but any expertise I have in kindness has been earned because of the kindness that our family has witnessed over the years.

Today I talked a little about what our family has gone through and all the wonderful ways people showered us with kindness. I discussed how people can be kind and how kindness is contagious. I even shared a passage from Smiles and Duct Tape. I’m proud to announce that I maintained the attention of a room full of fifth graders for almost an hour – FIFTH graders!

Once it was time for Q&A, I was shocked by how many thoughtful questions were posed about our family, about ALD, and about Jack. Everyone seemed very interested — did I mention they were fifth graders!?! It was a remarkable group.

We ended the presentation by introducing Jack and he showed-off by presenting everyone his favorite (and only) sign – LOVE. Honestly, I’m pretty sure that alone would have made the day a success;)

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Jack then gave each person a high-five as they left the room. I did most of the talking today, but Jack is the real teacher when it comes to kindness. I’m just lucky that Jack includes me in his speaking engagements.

Love, Jack

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Be Kind

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This Friday I’m speaking to a group of fifth graders about kindness. I guess our family has witnessed enough kindness to make us a bit of an authority on the subject.

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I’ve been sitting down trying to figure out how to approach the topic in an age appropriate way. I don’t want to scare the kids, and I definitely don’t want to bore them. Fifth graders can be a tough audience.

I can list some of the wonderful acts of kindness that have been showered on our family — the meals, the gifts, the long hugs, the kind words in the form of letters and texts and emails. BUT I also think I need to share a bit about how to be kind.

There might be a few exceptions, but most people are born kind. Bad behavior directed towards others is either taught or a product of circumstance. Parents need to be careful about what they teach their children. Like all bigotry, ranking people in importance by their abilities is a reflection of that person’s own insecurities. If you need to put someone down just to feel strong, shame on you. Teaching hatred to your children – that’s called bad parenting.

I’m assuming that the crew I’m talking to on Friday comes from good parents that would never intentionally teach hatred. I think I need to focus more on the fact that perhaps these kids haven’t been taught about how to treat people with disabilities. Often mean behavior towards people with disabilities is simply ignorance and/or fear. People don’t know what to do, what to say or where to look.

Here are some simple ideas:

* Stop thinking of people with disabilities as “disabled people”. They are people first. Whatever disabilities they might have are simply a small part of who they are. Look passed their wheelchairs or braces or quirky behavior and approach them as people. Say “hi”. Smile.

* You don’t need to pretend. If someone has trouble walking — open the door for them or ask if you can help. If someone can’t speak — see if you can get them to give you a high five. If someone is in a wheelchair – you can comment on their cool equipment. I can’t speak for all special families, but we would much rather have people approach us with smiles and questions, than to pretend we’re invisible.

* Treat people the way you would like to be treated – always a good idea.

* Be kind/good-natured/caring/loving/warm/sympathetic/hospitable/friendly. It’s good for you. It’s good for the other person and IT’S CONTAGIOUS!

Love, Jess

I think I may start with the Harry Story. Harry taught me a great deal about being kind. I’m also going to introduce the kids to JackO – he is the master at teaching kindness.

 

Now really matters

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Remember when Facebook was a safe place to scroll through photos of old friends and cute puppy videos? Now I find myself taking a deep breath before sitting down at the computer and diving in.

Apparently, our family has been living in a bubble. A beautiful, diverse, inclusive bubble. A place where all people are accepted and we all believe in science (climate change is a FACT). Where everyone feels safe and neighbors are always there the help or lend some sugar. Where you walk down the street and you are greeted with smiles and hellos. Where teenagers get busted for their parties because they recycle their empties (true story – it’s happened more than once. Teens here risk getting grounded just to be Green). It’s called Maplewood. I’m not saying that our town is perfect, but it’s pretty darn close.

Unfortunately, the last two weeks have made it clear that some people in our country really want to pop our bubble. I’m getting scared.

Building walls, defunding NPR and the National Endowment for the Arts, potential (very conservative) judicial nominees, changes to immigration, Sessions, DeVos. Politics used to be background noise in my life and now it’s center stage — there’s so much information – my brain is spinning!

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It takes a lot to get me to talk about politics. Part of it is that I want everyone to love me and being opinionated can discourage love, but the biggest reason I’ve avoided political talk is because I don’t want to be questioned. I know what I believe, but have always been a little fuzzy on the details necessary to have a chance of winning a debate.

Now that Facebook has gone from being a fun place to a scary civics lesson, I realize that it’s time for this mom to start being informed and prepared to defend her beliefs. Anna and I marched together in New York last weekend. It was a beautiful day and the energy from the crowd was like nothing I’ve ever experienced. Thousands of people marching as one. Marching is a good start, but walking with sweet signs is just the beginning. I have a feeling this is going to be a long road.

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This blog is about our family. Our family is the one thing in the world where I AM an expert. I am not an expert when it comes to politics, but I do know when I feel that my family is at risk – when the country that I treasure is at risk. I have done a lot for my children. I have fought with doctors and insurance companies (even an occasional pharmacist), but fighting for my children can’t stop now. Now really matters.

Love, Jess (the mother of a strong, independent young woman and a teenage boy who has special needs and more “preexisting conditions” than I can count. Oh, and a human that loves the arts, choices, our melting pot and our planet)

Do as I say – not as your brother does

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The response to It Shouldn’t be a Secret has been a little overwhelming. I went from not being sure if I was ready to share the news that Jack was using medical marijuana, to having over 4000 people read the post and fielding tons for phone calls, emails and texts filled with stories and questions.

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Overall, there has been very little judgement. In fact, it seems that everyone has a friend or family member who has used cannabis for medical reasons. Some of the most conservative people I know seemed almost relieved to share their stories that they had hidden away as if they had done something criminal. Wait – in much of our country marijuana IS criminal – THAT’S part of the problem.

The one hint of criticism came in a question asked repeatedly. How did we explain to Anna that her brother was going to experiment with pot?

First – Jack is not “experimenting with pot” – he’s trialing the medical benefits of cannabis (that sounds way more official).

We did approach the conversation carefully, but we were honest with Anna from the start. Anna is only sixteen, and by all means we do not condone the use of any substances by young people, but — BREAKING NEWS — teenagers have seen more than you think. Anna knows people who use pot for other reasons than trying to alleviate the spasms in their feet. She was not shocked by the word “marijuana” and she understands that what’s good for her brother is NOT good for her (or her curfew).

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Also, people need to remember that Anna is not your average kid. She was six-years-old when her family scattered and she was told that her brother might not survive. She has witnessed the reality of life changing overnight and the fact that there is often not a right and a wrong answer when searching for solutions. Instead there is often a “maybe if we . . . “ and “let’s see if this works”. Anna is interested in studying biomedical engineering. It took me a while to truly understand what that means other than many, many years of education post high school. My limited understanding now appreciates that Anna wants to help create treatments to save lives. ALD, cancer, ALS – watch out. When Anna sets her sites on something, she’s all in.

Now that medical marijuana has been a success in our house Anna seems to be wondering less about the smell in our kitchen and more about what in cannabis is helping Jack. The scientist in her is fascinated. Lucky for us, because I’m more interested in the fact that it’s working then why — it’s probably good to have one person in the house who understands the science behind it.

As far as the stigma on marijuana – we’re getting over that. The more research we do, the more solid we are in our belief that marijuana is a remarkable drug with a host of benefits. Just last week, top scientists at the National Academies of Sciences, Engineering and Medicine weighed in on marijuana and it’s health effects. After considering more that 10,000 studies, they concluded that marijuana is helpful for pain relief, muscle spasms related to MS (a disease similar to ALD), and for treating nausea and vomiting associated with chemotherapy. I think it’s time we all take a look at our medicine cabinets and realize they’re filled with far more harmful things than cannabis. Hopefully we will continue to see positive change in policies regarding marijuana (although after today, who knows?).

So, that’s how we handled the Anna situation. We were honest. I’m not sure how Dan and I would have parented teenagers under different circumstances, but we have ended up be the kind of parents who answer questions honestly and openly. Anna might not know every detail of our histories or every decision we make now, but she knows her share, and Anna has turned into quite an incredible person – I guess we’re not doing such a bad job.

Love, Jess

Anna’s not completely without complaint. When I am baking for Jack, she always reminds me that I NEVER bake for her. Sorry.

It shouldn’t be a secret

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If you’ve come to our house lately you may have noticed some changes. There are signs all over food in our kitchen saying “JACK ONLY” and there’s a lingering smell in the air. We had someone working on the alarm … Continue reading →

GOODBYE 2016!

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I’m pretty sure all of us feel that 2016 hasn’t been quite what we expected. Years rarely live up to their promises, but this year has been particularly tough. So many heartbreaking losses. And, I don’t just mean the folks … Continue reading →

DecemBLUR Magic!

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We’re off for a week in Miami to visit my older brother, Pablo, and his family. Dan, Jack and I are beyond excited with the idea of getting out of town for the holiday and spending time with family in weather over 30 degrees, but Anna gave me a little bit of a hard time, “We’re gone on Christmas? What about Santa?” I did hesitate for a quick minute before realizing that she was more concerned about missing fun parties than the old man with a white beard not being able to find her stocking.

The truth is that I don’t think our children ever believed in Santa Clause.

And I can’t even blame ALD. Long before ALD entered the equation, our kids were realists. They went through the motions, but they weren’t fooling anyone, “Mom – it just doesn’t make any sense.” It’s as if they came into the world a little jaded.

Or, maybe it’s just that Dan and I were too lazy to create a truly “magic” holiday.

Sure, we’ve always gotten a tree and decorated the house. We even put out cookies every year – and carrots for the reindeer. But, Jack and Anna always knew it was a charade. They went up to bed early on Christmas Eve without a fight so that Dan and I could set things up for the morning, and neither could really mask their rolling eyes as they saw the plate of half eaten cookies and the note left from Santa (even since ALD, Jack can still roll his eyes when he needs to).

Dan and I love family time and creating traditions and memories, but we aren’t very good at all the hocus-pocus required to create real holiday magic. Once we get through the planning and the cards and the gifts and the decorating, we’re too exhausted to keep up the performance. We also have done a terrible job at focusing attention on the religious stories behind the holiday. Yet another thing we have managed to mess up.

Despite scaring our children by not fulfilling our parental duties, we do appreciate the holiday season around here. More then the trees and lights and candles, it’s the holiday feeling that I most appreciate. Opening the mail every day and seeing whose faces are hiding in the envelops. The music that is always lingering in the air. How (most) people take an extra moment to thank you and wish you a “Happy Holiday”. With all the ugly in the world right now, a pleasant moment with a stranger can be a pretty magic thing.

Try to pause for a second this DecemBLUR – look past the lights and the trees and appreciate all the real magic that is around us.

Wishing everyone a very MERRY, HAPPY and JOYFUL season!

 

Love, Jess

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A Room Full of Duct Tape

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I’m not sure of the best word to describe Thursday’s reading at WORDS – but unreal and overwhelming keep coming to mind. The reading took place in the basement of our local bookstore (that makes it sound depressing – it’s … Continue reading →

When “Thank you” isn’t enough – THANK YOU!!!!!

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I hope everyone had a great Thanksgiving. Four days on Block Island in a house full of family, has us all feeling super grateful (and maybe a little exhausted). All things considered, we are one lucky family!

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The support our family has received over the last ten years has been amazing and with the release of Smiles and Duct Tape, it’s all been magnified. I’ve been receiving notes for the last two weeks from friends and family and strangers who have stumbled on the book. I’m so touched by the kind words and thrilled that the book is finding an audience.

The words “thank you” aren’t really enough, but THANK YOU!!!

If you are local, please join our family at WORDS for a reading/signing/Q&A this Thursday, December 1 at 7:30. I can’t promise that I won’t be super nervous (and I will definitely end up in tears at some point), but at least I can THANK YOU in person.

Love, Jess

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