how – part two

So where was I?

Ah, yes. My friend, Cole* had reappeared in my life after some obscene amount of time – that I can’t keep saying because it makes me feel OLD, so we’re just going to go with, “Oh, look, there’s Cole and he’s all grown up.” Deal?

Cole had made it clear that he was on a personal mission to learn more about the autism community and to figure out how to best leverage the resources at his disposal in order make life better for our families. And he was asking ME to help. So, um, no pressure. Right.

We set up our first meeting over lunch. The immediate goal was to give Cole an overview of the autism community – a daunting task in and of itself – and then to talk a little bit about the political landscape, the challenges we face both internally and externally, and to come up with a plan of action.

I knew that my perspective would never be enough. As we all know, when you’ve met one person with autism, you now know one person with autism. No one member of this community is representative of the whole. We have dramatically different (and sometimes even contradictory) needs. Our challenges are not the same. Our most immediate priorities vary radically. I was going to need help.

Since Cole was looking to start with the parental perspective, I sought out as many parents as I could. I did my best to reach out to as diverse a group as possible. And let’s be honest; I didn’t have to search too far to find people with very, very different views on what is important. I made a point of asking people both within my comfort zone and far, far outside it.

The following e-mail went to just shy of fifty parents.

Dear fellow autism parents,

What if an old friend that you hadn’t seen since college contacted you on Facebook?

What if that old friend sent you a message saying that he’d come across your blog while searching for autism resources.

What if he told you that he had been looking for a way to contact you ever since?

What if you then talked to that old friend and he told you that he’s on a personal mission to better understand the needs of the autism community?

What If he then asked if you’d be willing to sit down over lunch and help to educate him about the issues that we face every day as parents of children on the spectrum?

What if your friend, as it turns out, is the State Director for a very powerful senior US Senator?

What if he is asking these questions because he feels like he is in a position to HELP but isn’t sure where to begin?

Well, if it were me I’d e-mail some friends whose opinions I respect. I’d ask them for their perspectives on what is most important, most pressing, most direly needed in our community.

I’d ask them to tell me IN SPECIFIC TERMS what they would like our government to do for them and their children (and adults on the spectrum!) RIGHT NOW.

So, um – here I am.

Asking.

Cause lunch is next Wednesday.

What would YOU say???

Best,

Jess

As the responses poured in, themes began to emerge. The following is a sampling of the topics brought up, many of which were urgently repeated again and again throughout the e-mails. (Please note: they are listed here in no particular order. These are not ranked nor prioritized in any way; they are simply written in the order in which the e-mails appeared in my inbox.)

**

Universal, equal, non-discriminatory health insurance coverage

Full funding of IDEA (the Individuals with Disabilities Education Act)

Training of first responders and law enforcement officials

Support for Early Intervention

Transition services and support into and throughout adulthood

Creation of and support for appropriate adult housing

Job training, coaching and ongoing support

Incentives for schools to become structurally appropriate for all learners

Federal restraint and seclusion legislation

Mandated reporting of bullying

Respite care

Universal access to augmentative communication devices

Tax rebates for homeschoolers

Independent research into environmental causes of autism including but not limited to vaccines

Studies of biomedical treatments

Broadening the scope of autism treatment beyond behavioral intervention

True access to FAPE (Free Appropriate Public Education)

Curricular reform

Creating a culture of acceptance

Broadening education to focus on social, behavioral and emotional intelligences for ALL children

Reauthorization of CAA (Combatting Autism Act) (ed note .. and maybe a name change?)

Passage of the ABLE Accounts Act (Achieving a Better Life Experience) to enable parents to save for disability expenses

Immediate help for military families

Empowerment of the NIH (National Institute of Health) to launch an Autism Project

Physician training and ongoing education

Increasing public awareness of the early signs of autism

Provision of reputable, unbiased information about various interventions and treatments

Regulation of autism treatment providers

Education and ongoing training for teachers

Peer mentoring in schools

Education in the schools regarding developmental differences

Care coordination between schools, mental health providers and medical services

Research into longitudinal measurements of staging of interventions over time

Centers of excellence in each community across the country for education, training, socialization, coordination of services

Unification of the autism community’s various advocacy groups

Penalty-free access to 401k monies

Research into regression into autism

Coverage of and access to vital interventions such as social skills groups

Adequate coverage of ongoing occupational and speech therapies

Coverage of Neuropsych exams

Disallowing funding from pharmaceutical companies, both politically and scientifically

Holding Obama accountable for his campaign pledge to allocate one billion dollars to autism services, research and treatment

Maintaining federal health care reform provision of CAA

Support for AFAA (Advancing Futures for Adults with Autism)

Address 80% unemployment rate of autistic adults (ed note: depending on who you talk to, this number might be very light. And of those who are technically employed, a staggering number are dramatically underemployed.)

Access to SSDI benefits

Changing the qualifications for adult disability – threshold is currently based on IQ, recently lowered from seventy-five to seventy with no regard to social deficits.

**

I collected the responses and did my best to clean them up and make them relatively easy for Cole to digest. And though I did what I could to edit them for him, what I tried to leave in were the Thank You’s. I believed that Cole needed to hear the gratitude. He needed to see the constant refrain – “Please tell your friend how grateful we are that he cared to ask.”

And so it was that I showed up to lunch with a man who I hadn’t seen in twenty years and proceeded to hand him an improbably thick pile of papers. “It’s great to see you,” I said. “And I’d like to introduce you to some friends.”

To be continued …

awkward

OK, guys. Don’t hate me. I know that some of you (don’t worry, April, I’m not naming names. April.) aren’t going to be too thrilled that I’m taking a detour from telling the improbable story of the public servant who was actually looking to serve the public.

But as it turns out, trying to tell an actual story – when you’re hell-bent on doing it justice at least – takes time. And as you know, time is a rare and fleeting commodity around these parts.

So, while I promise to get back to it, I hope you’ll forgive me if I distract you with a fun little story in the meantime.

Ooh, look, something shiny ..

**

Awkward

awk·ward (ôkwrd) adj.

1. Not graceful; ungainly.

2. a. Not dexterous; clumsy.

b. Clumsily or unskillfully performed: The opera was marred by an awkward aria.

3. a. Difficult to handle or manage: an awkward bundle to carry.

b. Difficult to effect; uncomfortable: an awkward pose.

4. a. Marked by or causing embarrassment or discomfort: an awkward remark; an awkward silence.

b. Requiring great tact, ingenuity, skill, and discretion: An awkward situation arose during the peace talks.

A new friend is coming over for dinner. Laurel is a client; someone who I’ve just recently begun getting to know. As we firm up the details, it hits me that she doesn’t know that Brooke has autism. It feels odd. By our very nature, there aren’t many people in our lives these days who don’t know.

I say, “There are a couple of things that I need to tell you before you come to the house.”

I pause, not entirely sure how to proceed. This is usually a far more organic conversation, but I can’t really figure out how else to go about it.

“My youngest daughter, Brooke has autism. So there are some things in our house that may seem a little – well, different.”

Laurel is younger than we are. She doesn’t have kids. I have no idea how this might go.

She responds by asking thoughtful and respectful questions – “Are there specific things that are hard for her? That she likes? Are there specific colors that she likes or doesn’t like? Sounds?”

We talk a little bit. I tell her that my girl has trouble with novel conversation. That she may start reciting scripts at the table. That she may talk about Godspell. A lot. That she is funny. And sweet. And smart. And really damn cute. And that sometimes she does and says things that appear to come out of left field.

Laurel is officially unruffled. She all but shrugs and then asks if she can bring dessert. I liked her before this conversation; I’m pretty sure I love her now.

I try to tell her how much her reaction (or lack of one) means to me. I begin to well up. Not OK at work. We move on. No, she can’t bring dessert, but thanks for asking.

“Oh, and um, there’s one last thing,” I tell her.

“We, um, well, oy. We do a team cheer before dinner.”

I tell her that she’s still welcome to back out – no harm no foul. She chuckles. If nothing else, she’s now coming just to see this.

I tell her how it came about. I explain that every night before dinner, our family has held hands, bowed our heads and said, “Thank you for the food we are about to receive and the precious gift of each other.”

I explain that about a year ago, Brooke apparently decided that our simple grace was not enough. One night she insisted that we all put our hands into the middle of the table and chant, “Go! Go! Go! Go! Goooooolden Explorers!” Yes, Dora fans will undoubtedly recognize it as the cheer for Dora’s soccer team, but hey, it is what it is and what it is is important to our girl, so we went (and still go) along for the ride.

Dinner with Laurel was delightful. Brooke showed her how to do the cheer and she joined in with gusto. Katie talked her ear off. Laurel told us stories of her adventures traveling around the world. She loved Luau’s cooking. It was quickly obvious that the dinner would be the first of many.

The following week, we planned to do it again. This time Laurel’s boyfriend would join us. We chatted beforehand. “Jess,” she said, “Sam doesn’t spend much time around kids. I just wanted to let you know. I mean, it could be a little .. well .. awkward.”

I laughed so hard the water I was drinking stopped just short of coming out my nose. Nice image, huh? You’re welcome.

“Um, Laurel?” I said. “We do a friggin team cheer before dinner. I think we’ve beat you to awkward.”

She laughed and agreed, “Point taken.”

As it turned out, Sam was just as laid back, generous, easy-going, warm and funny as Laurel. And despite a whole lot of opportunity, there was not a single moment in the entire evening that felt remotely awkward. Instead, there was laughter and warmth and the beginning of a very real friendship.

Nothing like getting your awkward on together to make things not awkward at all.

how – part one

*

I have a confession.

I’ve been avoiding you.

Listen, I don’t want this to get all weird or anything. I swear it’s not you. It’s me. But well, I needed a little space.

A lot has happened since our last conversation. No, really. A LOT. Yes, I know it’s only been a matter of days, but you know me well enough by now to know that a week in the life of this family elapses sort of like dog years – time happens in multiples of seven.

We live in Fast Forward, squeezing entire lifetimes between dawn and dusk. And as easy and natural as I find it to write about the small moments in between the sun’s traverse across the sky, it’s the big stuff that stymies me. I suddenly find myself mute when I have an actual story to tell.

I worry that the words won’t be big enough. That the very magnitude of the events will be lost in my attempt to narrate them. That I simply won’t be capable of wrangling the story onto the page.

But I feel a responsibility to try. Not for you, dear reader, but for my children, who will one day, I hope read all of this. Don’t get me wrong, I certainly feel a responsibility to you too. Of course I do. I adore you.

Anyway, responsibility, yes. God, I’m procrastinating.

OK, enough. Here’s the story.

Last summer, I got a message via Facebook from an old college friend. I hadn’t spoken to him since he graduated nearly *gasp* twenty years ago. (For those of you doing the math, I was eight at the time.)

Hi, Jess. I was searching the Internet for information about autism and I came to what I think is your blog. I saw the picture and knew immediately that it was you because you haven’t changed the slightest bit from college. Seriously, you look EXACTLY the same. I don’t know how you do it. You must still get carded all the time when you buy beer. (OK, he didn’t actually say any of that last part, but it was implied, people.) I’d love to chat if you have some time.

As happy as I was to hear from him after all these years, my heart sank. Unfortunately, I get an awful lot of ‘I was searching the Internet for information on autism and I came upon your blog.’ Parents who are wandering in the dark and scary place after diagnosis, friends who suspect that something in their child’s development is amiss, people desperately seeking connection to someone who’s been there.

I wrote back and we set up a time to talk.

As soon as we’d caught up, I told him that I assumed that he was coming to me because he had concerns about one of his children. He quickly assured me that he did not. At that point, I was simply confused.

He explained that he works as the State Director for a (very) senior United States Senator. That fancy title, he told me, means that he serves as the Senator’s Chief of Staff for in-state affairs. As such, he takes calls from people within our state who need assistance. “When your back is against the wall and you need help, you call your Senator,” he said. “It’s my office that you call.” I pictured US citizens wrongly imprisoned in other countries calling home and begging someone to call their Senator for help. Made perfect sense. But that wasn’t what he was getting at.

He went on to tell me that he has become increasingly aware of the autism epidemic over the past couple of years. “It’s hard to miss,” he said. Indeed. He told me that it’s struck him both from a public perspective and a very personal one, as a close friend’s child was diagnosed not long ago and he watched the family begin to navigate the rocky road toward getting him the help that he needed.

He said, “The thing is, Jess, as much as I know that there are thousands upon thousands of families in our state trying desperately to cope with challenges of autism, I don’t hear from them.”

I laughed. Sort of maniacally. Definitely too loudly for anyone’s comfort. He asked what was funny.

“Oh, darlin,” I said, trying to catch my breath. (I turn into a Southern diner waitress sometimes; don’t ask.) “I just can’t say that I’d ever think to call my Senator. I mean, there’s a reason you don’t hear from us. We don’t have the TIME to call you!”

I tried to compose myself. I explained that there are political advocacy groups out there for whom we do our best to raise awareness and funds and then who we trust to call our Senators for us. I told him about Autism Votes and their tireless work on legislation like the Combating Autism Reauthorization Act , the ABLE Accounts Act and their state by state efforts to enact Autism Insurance Reform.

That wasn’t what he meant.

“I get that,” he said, “but well, I guess my mission has become to understand what it is that families need EVERY DAY. I want to know how my office can help in the EVERY DAY challenges of raising a child with autism. I know that we CAN. I just need some help figuring out HOW.”

to be continued ..

hope defined at hopeful parents

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I’m at Hopeful Parents today, talking about, well .. hope.

Please click on over. And leave a comment there, if you’re so inclined. I love hearing from you.

Oh, and wander around the site a little while you’re there, won’t you? There are some other wonderful writers who you’ll love getting to know.

I’ll see you there!

-> CLICK HERE <-

What are you still doing here?

Go!

 

the pass

I’ve been at the cancer center for nearly three hours. It’s a beautiful new facility. The waiting rooms are bright and airy and as inviting as they can be. I’m sipping the free coffee while I wait.

I hate it here. I hate everything about this place. I hate the tired eyes, the fear, the tears, the worn-out smiles. More than anything, I hate seeing the kids.

I rode in on the elevator from the parking garage with a little girl and her mom. The girl was no more than Katie’s age. She wore a pink bandana over her bald head. I’d gotten into their elevator by mistake – it was headed in the wrong direction. I gave an exaggerated shrug and joked with her that I had just wanted to ride with her for a while. She gave me a beautiful, shy smile. There but for the grace of God.

I’ve been texting with friends while I wait, trying not to think. I let myself get enmeshed in their drama. It’s a lot easier to think about right now than my own.

Once a year I come here, to the High Risk Monitoring Program. Once a year, I’m prodded and poked and checked. Once a year, I get a pass. Until next time.

The nurse finally calls my name. Well, half of my name at least. They’re big on confidentiality around these parts. She thanks me for waiting ‘so patiently’. I laugh and tell her not to make assumptions. She laughs too. She makes small talk as we wind our way down the long hallway to the examination room. I’m not listening.

She leaves me to change into a gown for the third time today.

“Front or back?” I ask. I used to try to figure it out. Now I just ask.

“Opens in the back,” she says as she pulls the privacy curtain.

I change, yet again. And wait.

I wonder why it is that in a breast cancer clinic, the gowns would open in the back. Does that make sense to anyone? I look around but find nothing of interest so I play with my iPhone. I chuckle and amuse myself by posting a status update on Diary’s Facebook page.

Proof positive that gender inequality is still alive and well — the mammogram. I promise you that if men had to smush their unmentionables seven ways to Sunday into a machine once a year to check for cancer, there’d be a laser version of that thing by now.

The doctor comes in to find me surreptitiously hitting “Share.”

We chat a bit.

She says, “So I hope you’ve had a good year.”

Not so much, doc. I don’t answer.

She swivels on her chair and looks right at me.

“HAVE you had a good year?”

Damn, what’s up with the direct question?

“No, not really.”

I try to laugh, but instead emit some weird, sharp noise.

“Oh, I’m so sorry,” she says. “Is there anything we can do?”

I wonder what on earth that might be, but thank her anyway.

We talk a bit more and then she asks me a more relevant question.

“Jess, have you ever considered adding in a yearly MRI to your monitoring program?”

My mom survived breast cancer. Her mother did not. In addition to my yearly breast exams at the OB-GYN, I come here to the cancer center once a year for a mammogram and exam. I see the same doctor, overseen by the same panel of experts, every year.

“Some people would rather not submit to the MRI,” she says. “It’s forty-five minutes face-down in a tube. But it gives us very different information than the mammogram. It uses contrast to really see the breast tissue and alert us to any changes or abnormalities.”

She goes on to tell me that the MRIs ultrasensitivity often leads to false positives. I tell her I’ve experienced the same with mammograms. This ain’t my first rodeo.

“So what do you think?” she asks. “Given your family history, it shouldn’t be a problem with insurance.”

I say the following.

“The reality is this. I have two little girls.”

My voice cracks. I’m not going to get through this without crying. Screw it. I don’t care.

“One of them has autism.”

I take a deep, jagged breath.

” Truthfully, I can’t imagine how their lives would work right now without me.”

She hands me a tissue.

“I come here once a year and each time I figure this is going to be the one. I hope that I’m wrong, of course, but given my history, it’s not exactly far-fetched.”

She doesn’t say a word.

“So that being said, if it does happen, I need to know that I’m doing everything I can to ensure that we catch it as early as we possibly can. So whatever there is that I can do toward that end, I will do.”

She hands me a wad of tissues. I use them to wipe my now soaking-wet face. I take pride in the fact that I remembered not to wear mascara. It’s the little things.

With no further questions, she orders a standing MRI that will alternate with the mammogram. One more safety net. I will now be seen every six months. Her voice cracks as she tells me the plan. I guess she gets it.

I don’t have time for this stuff. Truthfully, I don’t even have the emotional energy to spare for it. But it’s non-negotiable.

My girls need me.

I call Luau from the car.

I’m OK. I got the pass for six more months.

I hate this.

Susan G Komen For the Cure

Avon Walk For Breast Cancer

my sweet valentine

Brooke is sitting in Luau’s SUV inside the garage, still bundled up. Luau and Katie have run into the house momentarily, grabbing what we will need before heading out to dinner. Brooke must have asked to stay in the car.

I’ve just come in from walking Winston. It’s Friday night and I have not seen my girls since the morning.

I am nearly trembling with anticipation.

I walk to the open car door, where Brooke is perched in her booster seat. I want to scoop her in my arms. I want to scream, “It’s Friday!” I want to tell her how desperately I’ve missed her. I want to jump for joy and attack her with hugs and kisses.

I don’t.

I approach her slowly. Silently. I watch for the signals.

There are no words, but there’s a hint of a smile.

I take it as an invitation and lean in just the slightest bit.

Brooke reaches out with one hand and smoothes my hair. Again and again, she strokes the side of my head. The gesture is almost painfully gentle, overwhelmingly sweet. I can FEEL the love in her touch.

She looks at me. Right AT me. Still, to this day, this full view of her face is an unexpected gift.

“Hi, baby,” I say softly. I’m mesmerized by her eyes. “I missed you so much today.”

She says nothing, but she pulls my head down and into her chest. I submit to my girl and let her hold me the way that she needs to.

Luau yells to me from the doorway. He’s telling me something about Katie’s upcoming skating competition. Details, changes, something I need to know. I hear the sounds but not the words. He’s asking a question. I muster a “Not now,” desperately afraid that even two small words might break the trance. Please God, I beg, don’t let this moment end yet. I’m not ready to lose this.

Brooke takes my face in her hands. She slowly traces the line of my nose. Then my chin. Then my forehead.

I watch her study my face. The connection is almost too intense to bear.

A single tear runs down my cheek. Brooke cocks her head, watching, then follows the tear’s path with a long, slender finger.

Luau and Katie make their way down and noisily pile into the car.

I kiss my baby girl and linger on her cheek. She is smiling – in her way. I tell her that I’m going to close her door now. I have to get into the car too. I’m stalling.

“I love you, baby,” I say as I finally, reluctantly pull away.

She is still looking at me. Into me. Somehow, the spell has not been broken.

She issues a single word. The only one that matters.

“Love.”

I get into the car, full.

too much – a long, meandering rant

Ed note: What follows is, as the title implies, long. And meandering. Somewhere in the middle it takes a sharp turn and ends up in an entirely different place than where it started. I did what I could to rein it back in, but I’m not guaranteeing success. I’m not even sure it’s entirely coherent, but I don’t have time to proofread it. So just remember, if you find yourself scratching your head along the way, you were warned. Good luck.

**

I love the Internet. I love the social media and the various forums that we have for finding one another out here in the ether. So often they feel like a lifeline.

I love the blogs, the web pages, the group resource sites and e-mail lists. I love the connection.

But sometimes it’s just too much. I simply have to shut it down before it gets too big, too sad, too unmanageable and I can no longer handle the nearly constant stream of comments, desperate posts and pleas for help.

I don’t know how to filter them. I just don’t have the gene. Instead, I feel this overwhelming sense of responsibility to read every one of them. I take in the stories of isolation, frustration, loneliness, fear. God, you can always smell the fear.

Have you ever read the Autism Speaks Facebook Page? People ‘sign’ the wall all day long. The emotion is palpable. They are desperate for help, validation, connection, hope. EVERY SINGLE DAY there’s a crop of new parents.

“Please help. My son was diagnosed with PDD-NOS today. I love him so much and I don’t know what to do.”

“My son is eighteen and has autism. I’ve been fighting for two years to get him into a group home. I can’t afford an attorney. I’m a single mom. Please pray for us.”

“My son has been hurting himself again. He tries so hard to keep it together but he can’t. We need help.”

Every single one of them breaks my heart. I want to reach out – to do something to help them help their babies.

Yes, sometimes it’s just too much.

And the differences in the care these kids are getting? It’s almost surreal. Reading the AS wall or any of the other national forums, one immediately sees the dramatically different levels of service from state to state, zip code to zip code, doctor to doctor, school to school, classroom to classroom. From one parent to another they try to figure out what they must be doing ‘wrong’ because they can’t seem to get their kid the same kind of help that someone else is getting.

Autism doesn’t come with a handbook. Doctors issue a diagnosis – Congratulations! You’ve just won a life-long neurological disorder!, then send parents to their local schools and say, ‘Have at it.’ School districts scramble. Money is scarce. They hobble together plans. Parents with time, money, and resources who happen to live in the ‘right’ places are able to get what their kids need. Even then, it becomes a nearly full-time job – creating, negotiating, monitoring.

But far, far more often we find the most vulnerable children in schools being babysat, guarded, managed and warehoused rather than taught because no one in their world has a clue where to begin.

It’s happening EVERYWHERE.

There are teachers and professionals with no resources who are begging, pleading for help from people like me – a mom with a blog – because we’re the only ones who are visible. The only ones they can find to turn to for advice, even if we are desperately unqualified to tender it.

This one a couple of days ago nearly did me in. An obviously loving and desperately concerned teacher wrote the following ..

As a teacher of students with autism there are so many things I need to understand about my students and parents. Currently, I have a student who is struggling with behavior in school and the parents feel sure the school is to blame for the issue.

If you could help me in any way I would be so indebted. My little guy tantrums when any demands are placed on him that he does not wish to comply with causing disruptions in learning for the classroom.

He is smart and engaging, but missing so many things because of behavior. The parents are loving and very supportive but in denial about the extent of his behavior. He is at risk of being suspended from school and they finally realize we must do something to help this child.

He has been diagnosed autistic, sees a psychologist, is medicated (prozac and risperdone), has hyperlexia but school is a battleground. The parents report the behavior at home is just as bad. Any advice to me as his teacher would be helpful.

Also, I am an itinerant teacher who travels to seven other schools so I am not with him all day. He is in a general education kindergarten with about 19 others staffed with a teacher and aide. He does not receive any other special ed services other than me which is once/week for 45 minutes.

Thank you for your blog and the invaluable insight you have provided me into the workings of the family with such a special child.

God bless this woman for looking for help. Her heart is so obviously in the right place. You can’t miss her desperation. She wants to do right by this child.

But by God she is apparently the sole support in school to a child with autism. She works with him for FORTY-FIVE MINUTES A WEEK. A WEEK. And obviously has no appropriate resources because she’s coming to ME – me, a MOM WHO WRITES A BLOG to ask for help with a child’s behavior. This terrifies me.

This child is five years-old. He’s on Prozac and Risperdone, has an autism diagnosis, and his ENTIRE SUPPORT SYSTEM is a woman who spends FORTY-FIVE MINUTES A WEEK with him and despite her valiant effort to learn, obviously does not have the tools she needs to help him.

I may write posts in forty-five minutes, but it took me three days to formulate my response to this teacher. I didn’t want to be dismissive. I wanted her to know how grateful I was that she was looking for a way to help this child. But, holy hell, she needs to get this kid some REAL help. Here’s what I wrote.

This little boy is very lucky to have someone seeking information on his behalf. Unfortunately, I think it would be terribly irresponsible of me to dispense advice knowing nothing about him or his situation.

It sounds as though he desperately needs far more services – beginning with an inclusion specialist or case manager working with a BCBA (a board certified behavior analyst) who can work with his teachers to create an appropriate program for him.

Many of our kids tantrum when they don’t have another way to communicate distress. It’s vital to create structure and predictability for our kids – visual schedules telling them what to expect can dramatically ease the challenge of transitioning from one activity to another and help them understand what’s expected of them.

It sounds like the best thing you can do is to alert both his parents and the special education administrators in your district that the child desperately needs far more support in the classroom than he’s getting.

Again, on behalf of all of our families, I thank you for trying to help and wish you all the best as you work to serve this child appropriately.

Children who could so easily have a fighting chance at independence are watching time evaporate as politicians posture and pose and schools throw them into classrooms they can’t possibly handle with untrained aides who have no idea how to support them.

This woman visits this child ONCE A WEEK FOR FORTY-FIVE MINUTES. And anyone is surprised that his behavior is unmanageable? Really?

As a society, the choice is ours – support these children now and help them to, in many cases, become productive members of their community later, or create a generation of dependents who will have no hope of contributing to society or supporting themselves as adults.

Until we figure it out, the river of desperation and fear will keep flowing. The comments and posts and pleas for help will keep coming. And sometimes, for this mom, it will just be too much to bear.

 

 

 

 

sweet emotion

**

If you’ve been around these parts for a while, you know that we’ve been working with Brooke on identifying emotions for YEARS. Despite fleeting glimmers of hope along the way, Brooke, like so many kids on the spectrum, has had a very hard time identifying feelings – both her own and those of the people around her.

We’ve spent years tagging emotions in conversation, “Honey, that looks a little tough. I can see that you are frustrated.” and “When I see someone who has been away for a while, I feel excited!” or “What a wonderful gift from Grammy, I’ll be that makes you feel happy!” The successes came, the words were repeated, but never seemed to really stick nor have a whole lot of depth beyond the most basic associations.

Recently, the full court press to teach Brooke emotional identification has taken on a fever pitch. Exercises are woven throughout every part of her day. With her aide, she writes a note home to one of us every day telling us one thing that she did that day and then circling the egghead portraying the emotion of her choice to tell us HOW IT MADE HER FEEL. She reads stories with her speech therapist and fills out worksheets about how the events in the stories MADE THE CHARACTERS FEEL. With another, she colors in single scenes from a coloring book and talks about the action within and HOW IT MAKES THE PEOPLE IN THE PICTURES FEEL.

Emotional identification has become constant in her world.

On Friday night, we were driving home from dinner when Katie began to sniffle loudly. Brooke can not stand sniffles. They are almost as bad as coughs. They send her entire sensory system into overload. She yelled a strained version of the line that we’ve been working on to replace an outright scream. “THE SNIFFLING IS BOTHERING ME!!!!!”

Not quite the WAY in which we’d hope to hear it delivered perhaps, but nonetheless a huge step forward from an ear-piercing shriek.

As Luau drove, he said, “Great job telling us that Brooke. How does Katie’s sniffing make you FEEL?”

I grabbed a tissue box and handed it back to Katie who tried to tell me she didn’t need it. Apparently it’s the law that at nine and three-quarters, when you’re sniffling and your mom hands you a tissue, you have to say “No, thanks.” I insisted. She took it, made a half-hearted attempt to blow her nose, then resumed snorting. Ew.

Brooke answered immediately, her voice still tight and strained. “Annoyed!”

I began to celebrate. “Brooke, that’s awesome that you could tell .. ” She interrupted before I could continue.

“And …”

The word hung in the air as she searched for whatever it was that she planned to add.

My girl is getting this, I thought. She’s REALLY getting it. The idea that emotions can be rich and textured and layered and three-dimensional. That one word is almost NEVER enough to describe how we FEEL. That so often we need to circle two, three, four little eggheads to really describe where we are at any given moment. That emotions – even conflicting emotions – aren’t mutually exclusive, but often co-exist on the tumultuous seas within our hearts. Ok, perhaps I got a little carried away with that last part, but she had said ‘and’. Something else was coming.

I wondered what she was going to add. The anticipation was killing me. I thought through some of the emotions she’s been working on. Anxious? Nervous? Had they taught her ‘Uncomfortable’?

With tremendous conviction, she gave us the final word on how she was feeling.

“Disgusted.”

Hey, guys? I think she’s getting it.

 

 

polly-mitcha-cameo

**

My dashboard is littered with half-finished posts. They make up a varied lot – some are celebratory, some are brooding, some are calls to action.

The common thread is that they all feel BIG.

Even the celebratory ones feel HEAVY today. The things they celebrate – the watershed moments of obvious progress or the small nuances that simply FEEL like forward motion – aren’t easily wrangled into words and sentences. They loom large over the keyboard, daring me to try to convey their meaning in a post.

So I’m giving up. Just for today, I’m throwing in the towel.

I surrender.

Instead of writing today, I’m going to let Brooke do the talking.

As much as I love to hear my girl’s voice, it’s not the reason that I watch this video over and over and over again. I watch it because there’s a gift at the end. A treasure more precious than gold. And like so many of the gifts on this journey, this one was a long time in coming. Years, in fact.

Even now, it’s elusive, sometimes disappearing for days on end.

But here in this little video, I get to see it all that I want. Because it’s here in all of its glorious depth and wonder and in this mother’s opinion, breathtaking beauty.

My daughter’s eyes.

**

Ed Note: Thank you, Miss Marjory. You’ve given my family so much joy.

odds are

**

I remember once leaving an appointment with a photographer when the girls were little. The photographer had been something of a strange bird – an artsy type who lived and worked on an old mill. While her photographer’s eye was incredibly astute, her social skills were ever so slightly off kilter.

As we got into the car, Luau looked over at me and said, ‘Well, she was a little O-D-D, huh?”

We rode quietly for a few minutes as I tried to puzzle through what O-D-D might stand for. Obsessive Dompulsive Disorder? Oppositional Defiant Disorder? What the .. ? I finally turned to my husband and asked what the heck O-D-D was.

He looked at me as if I had three heads (which happens more than I’d care to admit), then whispered the answer, so as not to be heard by the girls.

“Odd, Jess. She was odd.”

We dissolved into laughter.

**

“You’re peculiar.”

“I take that as a compliment.”

~ Albert and Lionel in the King’s Speech

***

The other night, a friend of mine was upset. In a school assignment, her older son had been asked to find a word that described his younger brother, who has autism. He’d chosen the word odd.

To her, the word had felt like a punch in the gut. ‘We work so hard to get him to understand his brother’s behaviors and quirks’ she said. ‘If I can’t get my own son to understand all this, how can I get the rest of the world to see how special my boy is?’

I felt her pain and I knew her frustration. As a matter of fact, I was pretty sure that I knew exactly what she was feeling. I’d had an eerily similar conversation with Katie a while back.

Katie had called her little sister ‘weird’. I had bristled at the word and immediately sat her down for a heart-to heart. I chased my maternal tail attempting to find a way to talk to her about it. I did my best to sound like a grown-up as I explained to her that her choice of words had been extremely hurtful and that Mama was very uncomfortable with that kind of talk.

In typical Katie fashion, she took it all in, then looked at me and said, ‘Mama, she IS weird. It is what it is.” I was about to pounce when she shrugged and added, ”But she’s great weird. She’s Brooke weird. She’s OUR weird. And we love her.”

As always, Katie was a hell of a lot smarter than her Mama.

Our kids are odd. As Katie said, it is what it is. We can explain their behaviors – the WHY of what they do – until the cows come home. But the reality is that those behaviors are, well, kinda strange.

My nearly eight-year old girl asking strangers what Mary Magdalene would say to Jesus ‘if Jesus ate the wood chips’ is odd. Tough to deny that one. Needing to wear headphones to make it through a meal in a restaurant is out of the ordinary. Allowing Brooke to lead us in a team cheer before our family dinner every night ain’t exactly normal. Yes, we really do.

But odd doesn’t have to be negative. The challenges that come along with odd may downright suck, but odd itself can be pretty damn amazing.

The photographer who took the photos of my children that day? She’s incredible. Her work is all over my home and will undoubtedly live on in my family for generations. People flock to her for her uncanny ability to capture the essence of their children in a photograph. The way that she knows and uses the natural light at the mill is breathtaking.

Andy Warhol was weird. But his weird was think out of the box and create something entirely different weird. He was shake the world up and turn it on its head weird. He was take another look at the most mundane items from a whole new perspective and find the beauty in them weird.

What if, heaven forbid, someone had convinced him to be ‘normal?’ Andrew, stop staring at that can of soup. For heaven’s sake, it’s just soup. Go play baseball! The world would be without an icon of a generation and a standard of modern art.

What if someone had told Albert Einstein to stop messing around with all that crazy physics nonsense and go outside and make some friends? Or hey, at the very least, get a haircut? Albert, for the love of all things holy, no one will ever take you seriously with that crazy coif!

What if Lewis Carroll had finally walked away from that fantasy world of his so that he could carry on a proper conversation with people his own age? Please, Lewis, enough is enough. You’ve got to live in the REAL world if you’re ever going to make something of yourself.

Ed note: It is often said that all three of the people above had significant autistic characteristics and would likely have been diagnosed with autism spectrum disorders had they been alive today. I have no idea about the photographer.

Our kids are odd. They are quirky. They are different. And yes, they are even weird. And while we want desperately to mitigate their challenges and to find ways to allow them to ‘fit in’ if they so choose, fitting in doesn’t necessarily mean (and may not be able to mean) not being odd.

I worry about the ramifications of overly homogenizing our kids. I worry that if we beat the odd out of them then we’re going to create a generation of functional yet miserable adults who eventually implode from the weight of a life that feels like a grand charade of normalcy. I also worry that in so doing, we could lose the next Warhol or Einstein or Carroll (or amazing children’s photographer).

As elusive as it may be, I’m convinced that there’s a balance somewhere. A fine, nearly impossible balance that will come from giving our children the tools to navigate the world around them – granting them a CHOICE in deciding how they will be perceived by the rest of the world – while also celebrating their uniqueness just enough to let them know that it’s OK to be who they are. Letting them fly their ‘freak flag’ (as an adult friend of mine on the spectrum likes to say) if they so desire, and standing behind them, cheering them on when they do.

If we can do both – if we can give them an understanding of societally expected behavior (and its power to drive how they are perceived and received by the world at large) while also teaching them to value their differences from that world, then the choice is theirs.

And just think, if everyone started celebrating their oddities – if everyone let their own freak flags fly – guess who would be the odd men out in the end.