What I am afraid of

I usually enjoy going through the stack of schoolwork and colorful drawings that come home in my son’s Friday folder at the end of each week. I weed through the papers and pick one or two save-worthy examples that show his progress to keep for future kvelling.

Last week, one of my child’s Friday folder pages felt like a gut punch.

It had a picture of Scaredy Squirrel, a funny character in a children’s story by Mélanie Watt about being scared and stretching one’s comfort zone. The prompt “What I am Afraid of” was printed at the bottom of the page with lines below for students to write about something that frightens them.

Halloween is coming and with skeletons, witches, and creepy concepts on their minds, my son’s classmates filled in their pages with frightening things like ghosts and zombies.

Raphael’s page had one word on it.

He wrote, “surgery.”

I dropped the entire packet and stared at the single word on my boy’s sheet of paper. A wave of emotions caught in my throat.

That one word meant so much more than being afraid of a surgical procedure, of which my son has experienced too many in his 10 years.

Just after Thanksgiving last year, Raphael’s femur bone inexplicably popped out of his hip socket when he and his brother were roughhousing on my bedroom floor. That terrible moment began a series of events that tested his strength and the rest of our family for months.

It would take pages for me to document all the pain and hardship – as well as the moments of gratitude and grace – that followed my son’s emergency department visit that night 11 months ago. He was immobilized in a body cast for months, underwent an 11-and-a-half-hour surgery to rotate and pin his right hip socket into place, and needed help with all his daily activities. We withstood a taxing cycle of crushed hopes every time we brought him in for an X-ray only to find that his bones were not stitching back together the way children normally do.

Earlier this month, we ditched Raphael’s wheelchair and walker for good – I hope. We think his healing is finally, slowly progressing. He is happy to be free to move, for the most part as he wishes, and I am grateful every day that caring for him is less hard than it was just months before. A few days ago, I noticed that my upper body strength has already diminished since I am not carrying him around all the time as I had been last spring.

But I know Raphael’s other hip, the left one, is also malformed, and he is at risk of dislocation again.

Fact is: My child breaks.

That is why his fear of surgery and all that goes with it is my fear as well.

I happened upon one of the caring paraprofessionals that work with Raphael at his school the day after his Scaredy Squirrel assignment came home. Alison’s kids are the same age as mine and our paths cross frequently. I was working at my middle schooler’s yard-sale fundraiser for an orchestra trip next spring, and she was either volunteering or shopping as well. As we straightened the clothes hung on racks and casually compared items in our children’s sizes, I asked her if she had been with Raphael during the Scaredly Squirrel assignment. I mentioned my reaction to what Raphael had written.

She was surprised at the grief it brought up for me, and said, “Wait, let me tell you what happened next.”

Alison described how the school kids discussed their reactions to the story and shared what they were afraid of in class. She said their teacher asked them how they respond to being afraid. What should kids do when they feel scared, Mrs. Watson had asked?

Alison explained that some students said they could talk to their parent if they are afraid, and Raphael raised his hand to answer the teacher’s question.

When called upon to say what one could do when afraid, Raphael simply stated, “Be brave.”

Again his words wrenched my heart, but this time it wasn’t from recognition of fear. I feel proud of my son’s response, and I feel relief that we talk about being courageous so much in our house. It must be sinking  in. Still, my good feels are tinged with sadness because I wish our fears were indeed as real as a spooky ghost or Halloween zombie. I wish the things we are afraid of weren’t relevant. I wish that we didn’t have to be so good at being plucky and resolute.

And I realize that for the hundredth or so time, my boy who has taken so many stressors and challenges in stride, keeps teaching me, and those around me, to be brave.

This October season is a time to laugh at scary stuff, pretend to be things we are not, and possibly learn how strong we can be when we need to be.

Our children can be our best teachers.

Raphael dressed for Halloween as green ninja, Lloyd Garmadon from Ninjago.

 

Be Open to Yes

To celebrate World Down Syndrome Day (on 3/21 for three copies of the 21st chromosome), I am sharing a speech I gave at my synagogue during a Jewish Disabilities Awareness and Inclusion event about something I live for:

Including people with disabilities.

Enjoy…

 

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I was invited here to give you a glimpse into my role of being a parent of a child with disabilities and to suggest that being an ally to people affected by disability begins with a shift in perspective.

My youngest son was born with an extra 21st chromosome, a condition commonly known as Down syndrome.

Having a person with Down syndrome in one’s family comes with many perks – and also challenges.

Fortunately, challenges turn into strength. Having nearly lost my medically fragile child will never not feel raw. The flipside is I never forget to delight in and honor the boy I got to keep.

Because my family’s been through a lot, we have learned to be resilient, appreciative, and open minded. We remain unruffled around those who seem different. We are quick to celebrate life’s special, ordinary moments.

When my first-born eagerly swallowed puree off a baby spoon and signed his first word, “fan,” I called my mom, so she could kvell with me. It was like having a little party.

When Raphael, who has Down syndrome, first stood up for two whole seconds, we felt like throwing a parade.

Watching human development happen in slow-mo can be nerve racking because there is so much unknown ahead.

It’s also a joy. Terrifying and liberating at the same time.

Infants and toddlers typically grow quickly, but I got to enjoy having a baby for a long time.

All the while, there have been loads of extras to juggle. Parenting, as many here tonight know firsthand, is not easy. Raising a child with special needs is parenting on steroids.

Now that Raphael’s health is mostly stable, I fight for him to have the same opportunities as any other kid. I want him to build lasting friendships and get an education that leads to a productive, meaningful life. I say fight because it often is. We’ve been turned away.

But the sting of discrimination is not always blatant. The local charter school tells me that it might not be a good fit for one of my sons.

When a swim instructor places my boy in the class for toddlers, ableism has kept her from thinking of ways to include Raphael with peers his own age.

Before Raphael, I chose my bus seat far from the drooling man making uncomfortable noises.

When I couldn’t understand the mom with cerebral palsy talking to me at the park, I just smiled and nodded.

Since Raphael, I’ve learned to embrace curiosity, and I ask her to repeat her words until I understand.

There is much to gain by moving closer to those who act differently, but we’re masters at avoiding the discomfort that comes with it.

When I sign up my son for activities, people hesitate and point me toward their supervisor because it’s easier to assume it’s someone else’s role to help than it is to ask me directly what we need for my child to fit in.

I don’t expect people to consider every potential human need and try to meet them all. I do want people to assume it’s their job to open themselves to asking what’s needed, even when they may not be able to provide it.

I want to be more welcoming.

I recommend we explicitly invite people in our lives to tell us what would support their inclusion. I’d rather be asked what I need, even when I don’t know the answer, than fade into the shadow of otherness.

I admit parenting is a distinct chore for me compared to moms of typically developing kids. My child needs intensive support with dressing, washing, and other activities of daily living. We constantly have to adapt Every. Little. Thing.

It is difficult, and also, I believe, what any parent would do.

If your gut reaction is to disagree, maybe you are defining me solely by our differences. In reality, we are more alike than different.

Let me share the lesson I keep learning in this journey: The hardest part of having a loved one with a disability is those who aren’t disabled.

When I bring my boys to Friday night services, Raphael steers me to the front row (even when we’re embarrassingly late). He sings Hebrew-ish off key. Loudly. He pulls out his air guitar and joins Holli, playing his invisible instrument and dancing awkwardly.

Dressed himself for St. Patrick’s Day

We get dirty looks.

We get just plain puzzled looks, too.

I’ve learned to expect it.

I turn and lock eyes with the child or adult staring at us; I nod and smile while singing along. Most of the time, folks melt at this silent invitation to just go with it.

In many ways, the Jewish community does inclusion right. We know what it means to welcome a stranger.

There is plenty more to do.

During Raphael’s first few years, I was drowning. I routinely worked after my kids fell asleep until two in the morning. My husband stressed over his job because we needed the reduced health insurance premium that came with it. I searched for assistance.

Jewish Family Services and the Jewish Disability Network seemed like reasonable places to seek help. Each voicemail I left those organizations felt like another failure. Someone would call back and offer a different resource I should call. But when I did, the same thing happened. After a while, I gave up.

Giving someone who is struggling a resource to investigate may be the last thing she needs. I needed a person who would be a resource, ask questions, listen, acknowledge, and help come up with potential answers, together.

Reaching out for help takes guts.

So does answering the call.

I learned early in my parenting journey to expose my neediness: to ask for help and to say “yes” to any offer of assistance. I got that it takes strength to show vulnerability.

I invite you to open yourself to finding a Yes when it comes to supporting people with disabilities.

A few years back during Jewish Disability Awareness and Inclusion Month, autism spokesperson Temple Grandin spoke here along with a woman who described her struggles with her disabled child. Her son screamed constantly. For years. Can you imagine?

After the speakers finished, I talked to a friend in the audience. She asked me how to be an ally for families of a person with disabilities. I replied that when my kids were little, I wished someone would have asked us to a Jewish holiday meal. I didn’t have it in me to prepare a Passover Seder in those early years.

She bristled, “What am I supposed to do? Invite a screaming kid to my house?”

Only recently have I come up with the correct response.

Be open to Yes. Make space for what repels you.

Instead of remaining comfortably separate, ask the mother of a screamer how she handles it. Explain why you’re leery of inviting her. Perhaps she would appreciate a challah delivered to her door. Maybe she could use care for another child.

If we’re not willing to get creative, not courageous enough to brainstorm ways to include, maybe we are unwittingly excluding.

Disability is a natural phenomenon. Expect it; leave room for it.

At day camp pickup last summer, I chatted with the mother of my kids’ fellow camper on the Har HaShem playground. She told me her little girl asked about Raphael’s differences. She wondered what to say to her daughter.

I was thrilled for the opening.

I told her to explain that people grow at different rates and sometimes people need help with different things. I suggested her child could talk to my son and play with him.

I often say, “inclusion is a verb.” It is not enough to accommodate people with disabilities. The more important work is for the nondisabled to do.

We can connect with those who are different. We can question our kneejerk assumptions. Avoid empty platitudes like: “Let me know what I can do to help.” Instead, consider what would help you if you were in another’s shoes, and do that.

I am figuring out this parenting-a kid-with-disabilities thing every day.

I hope you’ll be open to figuring it out with me.

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Go here to watch the video of my speech. (I begin at 15:20 and end at 23:53.)

Owning what divides us

My 10-year-old tells me he likes attending Friday night services at our synagogue because of the cookies served afterward.

Despite his eating more than the two or three treats we’ve agree on beforehand, I’m glad he’s also digesting important lessons about community values by being there.

A few weeks ago after eating his fill of sweets, he went up to our rabbi to ask a question about the sermon.

Rabbi Greene had described a peculiar tradition from ancient days about what the elders in a community did following a murder. They went to the crime scene and announced their innocence over the deceased victim.

It’s not that anyone had accused the community leaders, but by stating out loud that they weren’t at fault for the horrendous act, they were also proclaiming their broader responsibility for it.

Rabbi Greene explained how leaders and members of a community are responsible for one another.

If a man is killed, what was going on in his larger environment leading up to the incident? If a child goes hungry, how did the community allow for a situation in which that could happen?

I wondered, what are the boundaries of our personal responsibility for a civic atmosphere where hunger, hatred — or worse — remains?

Eli had a similar question for our rabbi. He asked, “What if that guy over there,” he pointed to a group of kibitzing worshipers, “left here and robbed someone? Is that really my fault?”

“I wouldn’t say it’s your fault,” replied our rabbi. But it’s the grownups around you who need to make sure no one goes hungry, that everyone’s needs are met, and ask what we can do to take care of our community, he explained.

I’m paraphrasing what I heard the rabbi say, but I take the message about our personal responsibility for creating the world around us to heart.

I want the leaders in my city to do the same.

A couple weeks ago in my small town, a swastika was scratched onto the door of a Jewish couple’s apartment – twice.

It left me pondering the society I live in, the one we all have a hand in creating, a society in which bold expressions of hatred exist. In Colorado, acts of anti-Semitism have more than doubled in the past year.

If my response is to just shake my head and post my outrage on Facebook, I’m not really owning it. I need to ask: “How have I participated in a social climate where anti-Semitic vandalism occurs? What more can I do?”

Imagine community leaders going to the scene of the crime and announcing, “Not it. It wasn’t me,” as in the Bible story my son and I had been mulling over.

Sounds foolish, doesn’t it?

Denying a crime in that manner could be interpreted as saying, “it’s not my fault and therefore not my problem.”

But folks’ more typical reaction of expressing outrage over an incident and then moving on with their busy lives is not much better.

What if instead of just pronouncing, “No, we will not tolerate hate and acts of violence against one another,” we added, “I take responsibility for someone targeting a Jewish family in my town”? “Let me examine how I am complicit.”

What if we challenge ourselves by asking, “What could I have done to build a more inclusive, compassionate and just society? How can I be proactive in that regard from now on?”

I think these are questions we all can ask. If we want to learn from the past and have a better tomorrow, I believe we must.

Consider the two city-promoted opportunities for citizens of Lafayette, Colo., where I live, to meet potential city council candidates. The first event was set for the eve of Rosh Hashanah, one of the most significant times of the year for Jews – a day where Jewish people avoid engaging in work and social activities. The second candidate forum is scheduled for Simchat Torah, another one of the Jewish high holy days.

Setting the events on those holidays is like setting an election event on Christmas Eve. It wouldn’t happen in America.

Sure, Jews can catch the candidates’ forum on video feed after the fact, (if technology complies) but scheduling opportunities for citizens to meet their potential representatives and ask questions in person on days when Jews are inherently excluded leaves a perception that not all are welcome. It comes across as alienating and dismissive of an entire minority population. It maintains a group of people as the Other and inadvertently leaves people susceptible to being overlooked and ostracized further — and perhaps ultimately mistrusted, hated and condemned.

People in Lafayette like to say we are building an inclusive community. I believe this means that in addition to what we say, our city and fellow citizens must continually examine our actions (including those we fail to do) and recognize that perception is reality.

The Anti-Defamation League’s A World Of Difference program that teaches communities how to recognize and confront bias states that “attitudes and beliefs affect actions, and that each of us can have an impact on others, and ultimately, on the world in which we live.”

So it isn’t enough to claim we’re inclusive of all religions, colors, genders, backgrounds and abilities. We have to scrutinize where we inadvertently exclude, where we fail to bridge differences, and seek opportunities for actively including others and for social connection.

We need to take responsibility for our role in manifesting the community around us.

The city of Lafayette’s public information officer did just that. She apologized for forgetting to consult the calendar the ADL sends to local governments that lists religious holidays to consider when planning community gatherings.*

A few days after I told her that the candidate forums were set for Jewish holidays, she changed one of the dates. Instead of September 20, 2017, as originally planned, the first forum took place September 25.

I applaud the communications director’s ownership of the problem and steps to fix it because it makes a positive impression and supports Lafayette’s inclusive ideals. That makes our community more resilient. I bet city staff will remember to check alternate calendars in the future on behalf of all citizens.**

Certainly a scheduling mishap should not be conflated with carving a symbol associated with Nazis and the murder of millions on a neighbor’s home, but perhaps awareness of others’ holidays and working to include all kinds of people in one’s planning fosters an atmosphere where bigoted thinking and acts are prevented.

If we take collective responsibility for both incidents and choose to seek ways to do better, perhaps we can influence positive perceptions and change our climate for the better, too.

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* Event planners need to consider that Baha’i, Jewish and Islamic holidays begin at sundown the previous day and end at sundown on the calendar date listed for most calendars.

** Earlier this week, on September 26, 2017 , Lafayette’s Human Rights Commission decided to act on ensuring city staff check for religious holidays and other potential conflicts prior to scheduling events.

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Unwasted time

I couldn’t get phone messages all summer. Instead I got annoyed texts telling me my voicemail box was full.

Yeah, I know, my phone needed my attention. But it had to compete with activities and hours of planning for my kids, the quotidian load of mothering to-dos, and something different this summer: two long weekends of 50th birthday fun for me. My old iPhone4 (Gasp! I’m sure that seems retro to a lot of folks) had to wait.

Big birthday with friends

My cellphone had little memory to begin with. Its camera wouldn’t take another shot thanks to three years of photos taking up space, and I wasn’t clear where and whether my pictures were backed up. Somehow, a scroll-bar-worthy list of No Name contacts grew every time my 7-year-old’s little fat fingers left a sticky mess on the screen.

Of course, I didn’t want to delete data willy nilly. I wanted to make sure I kept the messages, contacts and precious kid pics I wanted, especially those few elusive shots where both kids were smiling and had their eyes open.

This meant backing up every image somewhere off the device and listening to each message to ensure I didn’t need to keep a copy on my storage-strapped telephone.

I soon learned that it was easier to rig a system to get a job done than learn the ins and outs of securing my electronic information via iCloud or some other unfamiliar-to-me means. With so many apps and opinions everywhere, how am I supposed to know the best practice for managing 1,000 plus pictures? I could search the Internet for answers, but experience cautioned me against tripping down a technology rabbit hole. Have you ever taken a moment to research something and found yourself three hours later with more options and less certainty than when you started? I have.

I was already using Google Photos because my children’s tablet puts photographs there, so I tried moving my iPhone’s images to the same place. Unfortunately, there was no way to tell whether they had all copied successfully.

Ends up, I had to set up a Google Photos folder on Google Drive, and that’s where things got confusing. One doesn’t want to backup pics in two places and use up too much of the free storage Google allows. And the two programs work differently. Delete a file from one, it may or may not disappear from the other. Edit an image in one, the picture may not update in the other.

But I really needed to let people leave me a voicemail, and it sure would be nice to be able to snap a picture from time to time, like the mom who snapped the screen shots my son’s teacher presented at Back to School night instead of taking notes, as I did, about field trip dates and when homework was due.

Besides, there is super important stuff to preserve digitally, like the bug my kids found climbing outside our garage.

Boys discovered this friend climbing our house. R asked where Mantis’s friends, Po, Tigress and Monkey (from Kung Fu Panda) were. Cute!

So after sending my kids to school one day last week, I spent tedious hours comparing the pictures still on my phone with those I had copied to the cloud to identify any that still needed saving before deleting the whole mess of them from my not-so-smart device.

Then I listened to every old message, made notes about significant ones, and cleared my phone.

It worked. I can now use my phone’s camera and let a call go to voicemail. Can I have a Hallelujah?

My husband is happy. He even acknowledged that his suggestion to bail on the whole time-sucking review-save-and-delete process and simply get myself an upgraded phone was overkill. I really don’t need so much technology. I mostly need a cellphone to make calls and texts, look up a number, and get directions. I have better things to do with my time than fiddle around learning cool new gadget tricks.

An interesting thing happened during my phone’s clean sweep.

While looking back on three years of pictures and messages, I gained perspective on how much I have been doing that is worthwhile. Although it feels like it at times, parenting isn’t one giant time suck.

Minute to Win It game at Eli’s birthday party. Kids raced to move M&Ms from plate to plate with a straw.

Most parents I know are overworked. But since I’ve only worked (for money, that is) part time these past few years, I feel guilt-ridden about my family’s currently bleak financial picture. I feel unworthy of comparison with full-time working mothers who still seem to volunteer at school, schlep their kids to soccer practice, and get family dinner on the table each night.

Then there’s that parenting paradox about doing so much but never getting it all done. As many a mother feels, I fill my head with all the things I wish I were doing for my kids instead of stopping to recognize that I am actually enough.

Seeing three years summed up in a montage of images and things I’ve been handling was eye opening. I feel justified. My kids got a lot of my attention – in a good way. And I seamlessly handled so much for my household that my husband never even needed to know details.

Here is a spattering of topics I managed according to the old saved VMs:

• Getting the measurement and prescription right of my son’s new bifocals to be sent from one eyeglasses maker to another
• Scheduling delivery of his wheelchair I had special ordered
• Being reminded about vast amounts of doctor and therapy appointments
• Helping an arborist find my house to give us a quote for removing the dead tree out front
• Learning the car seat my son’s sitter used broke and needed replacing
• Finding out when prescriptions were ready for pickup
• Getting info about new treatments and providers we could take advantage of
• Making sure fees were paid on time
• Having my husband leave me a detailed message about his take on the advocacy work I was doing because we have little time to talk beyond texts and messages

Boring? Yes, but busy.

As for the images, there were first days of school and camp; dance recitals and student performances; difficult memories about the weeks my youngest spent in a body cast; classroom holiday parties and birthdays; soccer games; ski days; various broken bones on my eldest’s limbs; Halloween hullabaloo; weddings, bar mitzvahs and myriad celebrations; crafts; play dates; Pokémon cards; and a bevy of kid-friendly activities and places where I played with my kids.

Rapha’s hip hop camp dance recital.

My husband often wonders why we need so many pictures that seem to waste space; he threatens to do a massive deletion. I think he’s announcing his frustration with the time and brain space that using technology takes in our lives. I get it.

Sure, technology is a time taker, but it’s also a memory maker.

I’m glad my tech time last week left me feeling blessed over the abundance in my life. I am relieved to have photographic testimony to jog my bountiful memories. It reminds me that time spent has not been wasted.

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Head games

Euphoric. That was my feeling after Forrest Walker (yes, that’s his real name) treated me post-concussion.

His simple touch on my abdomen, chest, thigh and head magically shifted the intangible energy within my body in indefinable ways. A fluid sense ran head to toe and back again as if my insides had become unblocked and calm instead of jagged and nervous as before.

One energy-work treatment was like the untwisting, full-body wring-out of a long yoga class but without my effort and with the intimacy of a healer who cares deeply.

Three weeks prior I couldn’t force my confidence enough to prevent an end-of-day crash while getting off the Indian Peaks chairlift at Eldora Mountain Resort. My first fall of the day ended up my last snowboarding run.

One moment I was standing up from the moving chair and on my way down the slick ramp; the next I was a crumpled heap, my pink helmet knocked forward over my eyes, a hammer-like blow pulsing at the back of my skull.

That bizarre backward fall yielded the first of two supine sled rides down the mountain, confined in straps and yellow plastic sheeting, bouncing turbulently at precarious angles across the terrain while watching the tree tops and clouds I could glimpse through the flapping tarp fly by.

Three Sundays later, I had started to feel like myself again, and it was my last chance of the season to ride with my son after his final ski school lesson.

Eli ready for ski school

I didn’t want to give up snowboarding. I still don’t.

I had taken a half dozen years off after failing to remain in the right head space to fly down a mountain post-childbirth. Something about being a mother made me so fear getting hurt that I’d quit the sport. I suppose it was my momma bear instinct to protect myself so I could be there to protect my babies.

I’d returned to the mountain with equal parts trepidation and gumption last winter when it was obvious Elijah was not going to quit his love affair with flying down snowy slopes. He so badly wanted me to join him. I did too.

Three weeks after the chairlift incident, it was parents’ day to join their kids on the slopes. I took it slow as I rode up and down the hill three weeks after my initial brain injury.

Trek Ski School 2016

By my second run, I was starting to get my groove.

After lunch, I joined Eli’s class. We raced down Corona run where it seemed all the snow-sliding enthusiasts I’d managed to avoid all day had suddenly congregated. Eli attacked a jump next to a clump of trees that most of his classmates avoided, and my heart swelled with appreciation for his self-assuredness.

My inner voice coached me to be confident as I followed the group.

I engaged my core muscles, strong and stretched; kept my gaze far afield to keep my posture tall; listened for the location of the HLMs (human land mines) around me. Distributing my weight evenly over my board, I shifted forward and back on bended knee with each quietly carved turn. I smiled, as Elijah had encouraged me to do.

But then, someone skied by too fast and too close. Perhaps I panicked. All I can remember is tumbling forward and smashing the top of my helmeted head into the snow-packed ground. I held my skull in child’s pose for an hour’s worth of minutes and fought back hot tears of frustration over clocking it yet again.

I rejoined my boy at the bottom of the lift, but I was done for the day. He went off to ski the double-black glades with his class. I visited the ski patrol medic, again.

Elijah and I were upset to end our winter so suddenly. I bolstered my energy enough to hike up Bonanza Terrain Park to video him taking flight on the jumps, and I used my yoga breathing to stay focused while driving homeward down the winding canyon with my head yearning to turn off. Aching to lie down, by 7:45 p.m. I was in bed for an unrestful 11 hours.

The next day, I called Forrest.

He says he was trained in the energy healing modality called BodyTalk System but really what he does is love.

His job is to touch a patient and get out of the way to allow one’s healing energy to communicate with him and to observe changes in the body. He says he shifted my cranial bones and helped my rocked nervous system realign itself.

I think it’s Voodoo. But also inexplicably real.

It’s well known that our bodies and mind are mysteriously connected within ourselves and with those around us. The body’s innate wisdom can bring about miraculous healing if we just allow it.

For a mom who doesn’t like to stop, whose hyper-vigilance is vital to her children’s successful emotional and physical development, it’s hard to stay out of the way of my own healing.

I’m impatient. I’ve been beyond annoyed these past few weeks when my brain hasn’t fired the way I’m used to. It’s irritating to experience emotions on a rollercoaster whose track I’m blind to.

I’ve had my visual perception professionally tested, and it’s fine one moment and unexpectedly impaired the next. Tinnitus, that steady, irritatingly distant buzzing in my ears that began when my youngest was in the noisy, machine-filled NICU has returned. When I find myself expending effort effectively or even driving successfully, I am rewarded with exhaustion that is strange and desperate.

The day after Forrest treated me, an unsettled feeling supplanted my euphoria. I called him again.

He says what I’m experiencing is typical with head injuries.

When he balances one’s mind-body energy, one’s perceptions are realigned. Those mind-body-energy thingies start processing old emotions held trapped inside. I’m supposed to be able to release them now.

That would indeed be a miracle. This injury is reminding me that I have old emotional projects I haven’t dug through enough. Life’s funny that way: how stuff keeps happening that brings past wounds and fears to the surface yet we can’t wait to turn away and focus on our to-do lists.

Thanks to my now-wacky brain (and for those who know me, I mean differently wacky from before) l I’m accomplishing my to-do list a lot slower.

I’m frustrated that I need time to heal. And I’d love to chuck my emotional garbage once and for all. But maybe I’m not quite ready.

Or I don’t know how.

Let the head games begin.

 

Finding heart in darkness

We humans are fascinated with negativity, with vitriol, the dark side.

Good versus evil sells at the movies and plays out everywhere from politics to interpersonal relations. Lookyloos actually click on terrorist videos of beheadings. Hate is spewed everywhere there is an opening for someone to share a disapproving opinion or bequeath a foul online comment.

When I shared a recent triumph about progress in getting my city to stop excluding kids who have certain disabilities from programs where most kids (including my own) could easily fit in, one of my siblings replied to my email: “What horrible things did they say?”

My message to my family had been concise. I had mentioned that I’d faced objectionable remarks while trying to get my city’s recreation leaders to be more inclusive, but the important thing was that I was finally making a dent. Their littlest nephew was looking adorable on the front page of the newspaper, and I wanted to share the story that the city was finally willing to consider ways – not just whether – to let him in to the after-school enrichment program his brother regularly attended.

Courtesy Cliff Grassmick, Daily Camera, Nov. 2016

My sister wanted to hear the nasty stuff. That caught me off guard.

I want to promote what’s going right, not dwell on what went wrong.

I consider myself a sunny-side person. I’m no perpetual Pollyanna, but I feel innately equipped to turn hardship into a gift and find ways to be grateful. I practice finding the upside while weathering life’s tempests. My friends like to point this out, which makes me feel sane.

So I didn’t respond to the email with a list of times my boy and I were treated poorly.

I tucked into my brain the idea that people see and hear what they are tuned into seeing and hearing. I could continue to speak my truth with a willingness to hear the haters keep hating.

In fact, when the recreation department’s exclusion of my son came into the public eye after a personal blog I wrote got picked up by a community Facebook page and went a bit viral, I was extremely careful to keep things positive and take responsibility for any negativity that might come up.

I kindly addressed city council to explain how Lafayette, with its sign at the entrance to downtown that says “Welcome. We are building an inclusive community,” isn’t actually as inclusive as it thinks.

My husband and I stopped the people we know in the media (thanks to Greg’s being a longtime reporter) from outright shaming the recreation department on Twitter and the Denver Post opinion page.

I refrained from telling local reporters the ugly ways recreation folks had disparaged us and instead tried to make department leaders look like heroes.

I rallied citizens to speak politely, calmly, and considerately about the issue. I showered those who spoke out with gratitude.

I prevented boycotters, who were angry about my son not being allowed to play, from taking their business elsewhere by convincing people that I hadn’t done a good enough job yet to educate those in charge about what it means to have an attitude of inclusivity.

For months, ideas I’d suggested had been routinely denied, or at least delayed from being looked into. I was kept out of discussions. I was told, we can’t talk about “how to be inclusive,” and, we’re just so limited in what we can do.

So I tried sharing ideas about easily accommodating my child’s needs using existing resources and found a skilled caregiver who offered to support him in the enrichment program for free, because what good is it to voice (or hear) a concern without sharing ways to resolve it?

I solicited no handouts. Like anyone, I had paid for both my kids to enroll in the after-school program to enrich their lives, not shirk my caregiving responsibility. But I also volunteered my time and offered resources. I brought professionals, who make their living by including marginalized people, in to help my city make it work. Lori Goldman, the supervisor of Boulder’s Expand inclusive recreation program, told me that I had gone way above and beyond to help Lafayette Recreation accommodate my kid.

While my son (and I at his side) attended a “trial period” that gave the city time to consult its attorney on reducing any potential risk of having a kid with special needs in the program, I tried to show the staff how to work with my son. Even though the city expressly stated that the point of the trial was to test feasibility, not train staff, the welcoming childcare workers were eager to learn and realized how including my child improved everyone’s experience.

It was disheartening when a city-contracted nurse consultant, who doesn’t specialize in kids with special needs as far as I know, ultimately determined that my son’s needs were too needy. I’m told she cited that he choked on a snack during the trial period. I’d been there; he didn’t.

The recreation department claimed to have my son’s safety in mind when it rejected him, but its actions show that it was focused on keeping itself legally safe. The director publicly calling my kid’s needs “severe,” does not make it true.

Still, I kept trying to be accommodating of the organization’s learning curve about how to accommodate a child’s needs.

If one is willing to listen to families to better understand needs and brainstorm adaptations to try (and be willing to fail, and try again), just like the camps that have included my son successfully have done, it doesn’t have to be as difficult as the recreation director asserted. Besides, like the promising resolution the City of Lafayette passed last month to reaffirm its commitment to diversity and inclusion, working together to find ways to say “yes” is the right thing to do.

What started as, We don’t know if we can include him, and then became a definitive “No” along with a refund of my son’s tuition, is now a maybe, again.

All along, I made no demands or threats, showed no cowardice or anger, and never whined or expected someone else to fix things. At first, I simply wanted to arrange childcare so I could work during working hours. Soon enough, my bigger goal became preventing other children from being denied.

One of various solutions to the problem I had offered is finally being employed. After so much public attention last autumn, the department suddenly became able to hear the suggestion of using a community therapeutic recreation provider, Out & About, to train after-school instructors (that is, as long as the idea was suggested by Out & About directly).

Disability awareness and inclusion strategies training began at the end of January. I am truly proud of the rec director and my city for such progress. I’m eager for their next step.

So now, what benefit would dwelling on the negative, on the times I wasn’t heard, be when my message that we can all do so much more by working together may finally be starting to sneak through? Playing the victim ain’t my thing, and it’s worthless when I can instead continue to advance my cause cooperatively.

I certainly never sued anyone, even though many think the argument that a publicly-funded entity not upholding ADA (Americans with Disabilities Act) law could easily be made.

So it was surprising to read the following comment show up on my blog last week:

“NO! You do not go around suing the city for your own personal benefit. Why don’t you show up and teach them how to work with you and your child? It sounds to me like you are simply pushing your kid off onto others and then crying wolf when someone at the rec center tells you the truth.

“Taking your huffing and puffing down to City Council, Planning Board, etc.. would be a MUCH better way to go about this. NOT taking money from ALL of us.

“Of course parents need a break from their child, but it seems extremely selfish and less than humble when they show up somewhere and immediately declare that they are being discriminated against.”

I can’t imagine the person who wrote this (named “Ucantbeserious”) actually read my post he or she was commenting on, but I hear the outrage. And I care about it.

I wonder why he or she feels so threatened.

I wonder whether others feel that cases of fighting discrimination – which take so much time and bravery to battle and which rarely come to light until injustice happens over and over again and one finally feels compelled to make a stand – is such a knee-jerk thing.

I wonder why people act as though basic equality isn’t really deserved. I wonder about so much misunderstanding, and negativity, in the world.

And then I wonder, who else can I reach?

 

Keep it from the kids

“How are we going to keep this from the kids?”

Greg and I were discussing last week’s massacre of 14 people in a San Bernardino facility that was being used for a holiday party and typically houses a California agency that provides support services to people with developmental disabilities.

When society’s most vulnerable people, those with disabilities and children, are involved or even seemingly threatened, it feels extra personal, and extra scary.

The Sandy Hook Elementary School shooting, in which a young disturbed man gunned down 20 little kids (6- and 7-year-olds!) and six adults in Connecticut, was three years ago this month. The public cries of “Never again” and “We have to do something” have long since been drowned out by an ever increasing number of shootings.

The Planned Parenthood clinic shooting had just happened the week before the California case, in nearby Colorado Springs, which added another slash in our beloved state’s sad record of shooting incidents (Columbine High, Aurora movie theater…).

The senselessness of such mass murders is numbing, and they’ve become so common that my husband and I typically don’t even discuss the events much at home other than to express the futility we feel when such dreadful acts are committed. And we never talk about such events around our kids.

We want to protect our boys even while knowing that the randomness of gun violence and the spread of terrorism are things we can never truly keep our children safe from.

Courtesy of Cliff Grasssmick, November 6, 2015, Daily Camera

I hate that my six-year-old tells me about lockdown practice at school in which students hunker down in darkened, locked classrooms to hide from an intangible, unknown fright. “No talking. Too loud!” he articulates, probably mimicking the teacher’s directives to his fellow kindergartners whose skill at being still and quiet is laughable.

My son, who has intellectual and language delays, gets the message that something horrifyingly wrong can happen to him in his supposed-to-be safe place.

I’m completely without words for what to say when (and it is indeed only a matter of when) my child overhears some conversation somewhere about one of these fearful tragedies that we all know will keep happening.

“It’s a thing, now,” Greg commented citing Malcolm Gladwell’s New Yorker article that explains school shooting as a group-think outcome of a social process whereby each successive individual is kicked into action by his own threshold that consists of how many people have gone before until that person will decide to join the group. It’s like slow-moving riot behavior in which the people who join a riot, that is, those who react to and act along with other rioters, have very different impulses than the initiators who threw the first stone.

We now know the San Bernardino bloodbath was not the act of a lone young, male gunman as the threshold-driven violence theory would uphold. It didn’t happen at a school. Authorities are calling it terrorism.

No comfort there. I am still frightened to be bringing my children up in a country where sudden, indiscriminate violence is a significant fear. And since I can’t make sense of it, I don’t know how to help my children understand either.

According to a press release from the Association of Regional Center Agencies, the parent organization for the nonprofit Inland Regional Center where last week’s shooting took place, “The developmental disabilities community is a family, and in these times of crisis, we come even closer together.”

That is true. Folks with a loved one who has a developmental disability were all over social media immediately after the shooting because of the connection we share.

I believe connection is the only thing that can ultimately prevent and console us when senseless murders occur.

Aside from a combination of gun control, voting (at the polls and with our dollars), speaking out, improving mental health care and fighting terror, the only thing we can, we must, do is to love one another. I’m not talking in some Kumbaya peace chant kind of way.

I think we actually need to teach our children how to love. Teach them that respect for others is love. That being in integrity is love. Being kind is love.

We need to demonstrate how differences have no inherent meaning.

But more than that, we need to practice acting out of love ourselves and point out loving ways to respond as active, alternate choices for our kids.

Words steeped in loving kindness promoted at school

When someone hurts our feelings, inelegant words trigger our pissed off-ness, our opinions differ, or we act imperfectly, we can take a quiet step back and remember that very little is about us personally, and we can throw love at every problem no matter it’s size.

Recently, someone close to me emailed me (again) a chunk of unsolicited advice and information that made me feel as though she thinks I’m dumb, or at least uninformed. I felt like she doesn’t trust me to make good decisions or like she thinks I’m trying to pull a fast one. I was upset. But rather than react, I absorbed. And I waited. I recalled the history of emotions at play in our relationship, and after a couple days, I was able to pour love over the harshness I felt and remember that my interpretation is just that. Her words are about her, not me. I was able to respond with love and compassion.

That kind of response may or may not come easily. But the behavior is essential to practice. Responding with love is essential to model and to describe to our children regarding even tiny things, like a simple email message.

Love is the antidote to hurt. Kindness, the balm for pain. A soft heart, the most powerful of all arms to protect against fury.

Every time I find myself frustrated and mourning the loss of innocents, and innocence, I will practice love harder.

It is Hanukkah, the season of bringing light into darkness. I hope you will join me.

On a lighter note… (31 for 21)

Someone got a hair cut.

Happy middle of Down syndrome awareness month!

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Not quite 31 for 21. In honor of Down syndrome awareness month, I am posting to this blog nowhere near every day for 31 days to increase awareness of Trisomy 21, the most common genetic condition that causes the syndrome.  #DSAM2015

Be very afraid (31 for 21)

Infuriating.

That’s how it feels to be told “No.”

In not quite these words, my city’s recreation department said: No, we don’t want your child’s kind. We don’t want to do what it takes to include him in our program. He is not allowed here.

As a mom, it hurts to have one child be welcomed to play in an afterschool recreation program while one’s younger child – the one with a publicly feared diagnosis – is turned away.

As an advocate, it’s frustrating to watch a bureaucracy focus on its own legal protection instead of its mission of serving the public.

As a human, it’s tragic that the fight to include people with disabilities in society is still so necessary, and it falls on the shoulders of ordinary folks needing extraordinary superpowers to make change happen.

Part of me just wants to walk away, but I can’t.

There is injustice whenever a person, because of his harmless differences, is excluded. And when that person is a gentle, fun-loving, cooperative six-year-old, it’s just absurd.

People are scared of this kid.

I’m a plan-ahead kind of person so I contacted my city’s recreation department well over a year ago to inquire about having my two school-age boys in its afterschool program so I could go back to work. Writing and editing jobs have been spotty lately because I don’t go after new business. Freelancing adds too many scheduling hiccups into my life. I’d like to find more consistent and reliable work like the part-time job I had when Raphael was a toddler, which I had to leave to provide the care he needed then. Unfortunately, that led my family to fall into debt. I simply need to climb out and earn a better income.

But with a kid who has disabilities, finding enriching childcare so one can work is anything but simple.

I’m beyond lucky to have a wonderful caregiver who is willing to watch my son and help him thrive, but I wanted him to be in a program with plenty of typical peers so he can socialize and be more physically and cognitively challenged instead.

So every so often, I followed up with recreation personnel to alert them that Raphael would need some simple modifications to support him in the next year’s afterschool program and to offer my help in arranging it.

I suppose I could have just signed him up for the afterschool program without any advance notice. It ends up I might as well have because the city did nothing to prepare. The program leader waited until school was about to start to talk about my son’s needs and what it needed to do: things like assign someone to be close by while he eats and climbs on the playground structure, make sure he goes to the bathroom, and be available if he needs help buttoning his pants.

I went out of my way to make Raphael’s participation work by providing a list of my son’s individual needs and strengths as well as care strategies that work well. I provided an ideal candidate ready to start (and willing to volunteer her time, too!) as Raphael’s direct care assistant. I provided job descriptions and salary standards for such a position, staff training and grant opportunities, information on what other recreation departments were doing to support differently abled people, as well as loads of resources about how to be inclusive. Later, I even offered to pay directly for my child to have an aide with him.

The folks responsible for the city-run afterschool program refused to discuss the information I gave them and only allowed us to pay tuition to have Raphael attend for a three-week trial as long as I went along with him and was 100 percent responsible for him.

Newsflash: Having Mommy care for her child while everyone else is led by recreation instructors is NOT inclusion.

I went along with the trial-period plan in hopes of showing the staff that it wouldn’t take much for the program to successfully include its first kid with Down syndrome. I shared several ideas.

For example, I suggested that the program instructors stop ignoring my kid because they figured Mom was handling him and instead address him directly and treat him like he belongs. I explained how it was inappropriate to make all the children stay in line when walking into the building with the exception that they could pass by my son as if he weren’t there. I demonstrated how if Raphael got a head start walking to the gymnasium for an activity, everyone could get there at the same time to hear the rules of the game together.

Everyone in the chain of management repeatedly made it clear that they didn’t want most of my advice.

Meanwhile, some interesting things happened during the trial period. I watched how children in the program took Raphael’s hand to show him the way, invited him to sit with them for snack, and modified their play to include him because kids are great at being natural peer supporters when adults don’t interfere. The young, barely above-minimum-wage-earning women who instructed the kids even started to include Raphael more.

In his short three weeks there, Raphael added a lot of benefit to the program. He has that tendency to help people be better at being people.

This kid even hugs pumpkins.

Since the trial period ended, Raphael gets sad when we go to pick up his brother from the program because he doesn’t get to join in the fun.

Inclusion is about making a conscientious choice to know and mediate the different needs of different people without excluding those who don’t fit a predestined plan. Being inclusive is about making little tweaks and accommodations as they are needed. It’s not that different from providing typical childcare. Being inclusive doesn’t have to be a big deal.

But the powers-that-be in the recreation department dragged their feet for months and then, instead of figuring out how to be inclusive with the resources they already have, spent their time figuring out how to deny my son access to the program without breaking ADA law and without looking like total asshats. The city took a few weeks to review its supposed “results” of the trial period and then officially told us Raphael was unwelcome because of his different needs.

For the past few months, I’ve heard plenty of lip service from the city’s recreation employees about how inclusion of people with disabilities is their goal, how they, too, have kids with special needs, and how nice it would be for the city’s recreation department to include Raphael followed by a variety of “buts.” The excuses boil down to this: Inclusion is just not a strong enough priority.

Ironically, the day we were finally informed that our son could not come back to the program, the city council spent most of its evening meeting spewing self-congratulations about how inclusive it was. Blech!

This isn’t over. If not for my son, for the sake of my community, I aim to make change happen so all people can participate in public activities without discrimination.

I have put countless hours into this already.

Really, I am just beginning.

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Not quite 31 for 21. In honor of Down syndrome awareness month, I am posting to this blog nowhere near every day for 31 days to increase awareness of Trisomy 21, the most common genetic condition that causes the syndrome.  #DSAM2015

Brotherly love (31 for 21)

The expansive love a new mother feels cannot be described.

Perhaps only one who has given birth can get what it’s like to have such tremendous affection for another being. Motherhood increases the capacity of one’s heart so deeply, so fully, so immediately.

Within hours of bringing my beautiful boy home from the hospital, I knew I wanted another baby.

By the time my firstborn was a talkative toddler – in perpetual motion and constant curiosity – I was pregnant with my second son.

I remembered a friend telling me she had had her second child as a gift for her young daughter. I could relate. I have three siblings who, aside from my own children, are the most important people in my world. I can’t imagine what my childhood would have been like or who I’d be today without my sisters’ influence.

I wanted Elijah to have a sibling. I wanted him to have a childhood playmate and later, a  confidante, and later still, someone to share life’s important moments with. I especially wanted him to have a brother or sister to go through the experience of having aging parents with – I suppose because that’s where I am in life and am I’m glad I don’t have to go it alone.

Shortly after Raphael joined our family, I felt I had betrayed his brother.

Raphael would not be quite the brother-in-arms I had envisioned. He had serious medical problems. He has physical and intellectual disabilities.

I don’t suspect he’ll be driving a car or partying on a college campus with Elijah some day. And even if he does, it’s not the brotherhood I had expected.

Nevertheless, the bond my two boys have is a thing of wonder.

Sure they wrestle as brothers do, and sometimes I think the only game they know is “fight.” But they love each other so purely, it’s inspiring and heart soothing.

Raphael follows Elijah from room to room and cries when his brother doesn’t want to play. When Raphael went down a playground slide on his own the other day, Elijah ran over with pride and excitement to tell me about the momentous development. When Raphael refuses to listen to his mama and falls to the ground in a boneless heap, Elijah will coax him along and lead him to the car.

Even though it’s not Elijah’s job to hang with his brother in a group, he just does it sometimes. When the school bell rang at the end of Raphael’s first day of kindergarten, Elijah walked from his second grade classroom to his little brother’s room to lead him to the bus. No one told my then-7-year-old to do that.

I think growing up with a sibling who has some differences compared to most people is a blessing for Elijah. Perhaps he’ll be a compassionate man and caring husband someday simply because he has grown up naturally internalizing the ideas that differences don’t matter, but being there for another does.

When Eli hears about the mistreatment of someone with a disability, or any human injustice for that matter, he takes it hard and wants to fix the situation. He gets pissed off when Raphael gets excluded.

I’m also aware that having a sibling with disabilities can create distinct concerns for a more typical child. That’s why I enrolled Elijah in Artism, a free art therapy class for siblings of children with autism, Down syndrome or other disability. Elijah isn’t particularly into art, so I wasn’t sure whether he really wanted to spend Sunday afternoons with the art kids and miss his beloved Broncos on TV, but so far, he’s into it.

As I write this, Elijah is painting a shed with a bunch of kids who have something in common that most of his school friends just don’t get. While making art, the kids can talk about what it’s like to have a brother or sister who has endless therapy appointments, or who can’t talk well, or who doesn’t follow the rules of the games like others his or her age.

Or not. It’s not really therapy at all. No one leads the kids to talk about anything in particular.

But it is something that Elijah gets to do that his brother isn’t allowed to participate in, on purpose. It is just for Eli.

When his brother was younger, Eli used to cry that he wanted to go to Children’s Hospital, our virtual home away from home for Raphael. Raphael got so much attention in those early sick years, and Eli, like all siblings, especially first-born ones, wanted more for himself. When your parent is in constant triage mode from one crisis to the next, seemingly less needy kids can feel left behind no matter how much attention they demand and actually receive.

Elijah knows that we’ll never leave him in the shadows.

“I am a pretty lucky boy,” he said to me a couple days ago for no apparent reason. “I have a mom who is there for me and who doesn’t yell at me like other kids’ parents. I get to do lots of fun stuff. I am free. And I get to have a brother with Down syndrome!”

Thanks to Eli, Raphael will get the attention he needs, too.

 

 

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Not quite 31 for 21. In honor of Down syndrome awareness month, I’d like to post to this blog every day for 31 days to increase awareness of Trisomy 21, the most common genetic condition that causes the syndrome.  #DSAM2015