CONGRATULATIONS/MY HEART JUST BROKE

Dear Persons,

I'm trapped in the kitchen with two beloved friends who are having a conversation that is killing me. Their concerns — top colleges, will they have to pay full tuition or get merit-based scholarships — are so far from mine. And my heart is breaking.

I’m at an intramural basketball game and the people behind me are discussing their kids’ SAT scores. And my heart is breaking. 

I could go on. And on. 

It’s been a struggle to write this post, because I don’t want people to feel nervous about talking to me, and I would NEVER want my son to feel he was a problem or burden or less-than in any way. 

So let’s get a few things clear:

1. I am happy for you and your child, truly I am.
2. I WANT you to talk to me and around me, freely.
3. I understand I am responsible for my own feelings.
4. I’m extremely, EXTREMELY proud of my kid, who is wonderful and perfect, exactly as he is.

But, as much as all individuals and families have their issues, life raising a child with special needs and/or having special needs in a “normal”/neurotypical world is just not the same as it is for neurotypical/typically abled individuals and families. And it needs to be okay to talk about that — to normalize those feelings and share ways to help ourselves and our kids move toward achievement and success, however we/they define those things.

So I share this heartbreak here — where people with differences and extraordinary challenges, along with their parents and loved ones, gather in community.

Most kids my son’s age are now going to parties, dating, driving, working, doing average or above average or spectacularly on the SATs/ACTs, going to college or about to, even thinking (at least somewhat realistically and practically) about careers. 

While kids on the spectrum usually complete high school, that accomplishment often entails the extended timeframe and/or extra supervision/accommodations/modifications specified by an IEP. 

At the same time — for both parents and kids — it’s somewhat easy through these school years to act as if many differences weren’t really impacting our lives. Everyone has the same schedule, and the same projected schedule, year wise, more or less.

But fewer than 20 percent of adults on the spectrum complete college.

And only 14 percent of adults on the spectrum are employed. 

So much has been written by parents, researchers, and allies about the period of diagnosis. How parents often need to give up their basic, original, often unconscious/taken-for-granted (that is, until brought into question when differences and challenges arise) dreams for their child. And then, how to cope with all that: Ideally, we adjust those dreams, replacing them with new ones.

There's less information out there about how your CHILD can face the potential loss of his/her/their dreams, or how to do so yourself when it’s your own life dreams that may be extremely difficult to attain (or impossible). 

It’s hard to find insights about how people transitioning to adulthood can achieve their basic goals and dreams in the face of extraordinary obstacles, most of which stem from a larger culture that does not necessarily support — never mind celebrate — people who may do things a bit differently. 

And there are a lot fewer resources in general available for adults.

In G’s particular situation, he’s already facing obstacles. Sure, lots of kids won’t get into Cornell, even with lots of hard work. And maybe there are other kids who want to be ornithologists and will have to try extra hard to get there. 

But for him, even dreaming of college is huge — and it will require many, many intricate factors to be wedged into place to even begin the process of moving toward his goals. 

Will his heart break, even a little, as he inevitably confronts his unique challenges?

Maybe less than mine does: He’s been understood, accepted, usefully diagnosed, supported, celebrated in his neurodiversity in ways that my generation largely was not. He’s whole, self-aware, untraumatized.  

We all have our heartbreaks. Just the other day, I thoughtlessly told a childless friend who has struggled with infertility that I couldn’t meet her because of something that came up with my kids. I winced: I could tell I’d thoughtlessly hurt her heart. And I was unsure of what to say or do. 

You know what? I bet that’s how people sometimes feel around me. Or you. 

So I tried to say something loving, understanding, and supportive. 

I guess that’s what G and I would probably like as well; but people are often clueless about this stuff.

So we deal as best we can. Extricating ourselves from some conversations, initiating others (as I am doing here). Being genuinely celebratory of others' success while refusing to let unfair barriers keep us down. Doing the work we need to do to heal, grow, and succeed. Persevering. 

And I’m hoping that when my heart is breaking (which feels frequent nowadays) it’s also cracking open, getting bigger — and thereby creating space for more compassion/wisdom/generosity, more faith in my child, more commitment to my advocacy work. 

As Leonard Cohen said, “There is a crack in everything / That’s how the light gets in.”

In the bigger picture though, the vicissitudes of my heart take a distant second place to  the importance of this amazing neurodiverse young person finding his way in the world. 

Just as I adjusted and grew far beyond my original ideas about my child’s life, I hope he will dream big. And if he ever has to give up one dream, I hope he will replace it with a bigger, better one, one that mitigates any heartbreak. I hope he dares to imagine a world made fundamentally more whole by his contributions…

I wish the same for all of you and yours. 

Love,

Full Spectrum Mama

 Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

An InLinkz Link-up

A WINTER PRAYER

Hate cannot drive out hate, only love can do that. 

Martin Luther King Jr. (from Strength to Love)

Dear Persons,

It’s easy to grow bitter. Sure, if you have a child with special needs, losing faith in this world is often tempting; but in this divisive political climate being human is an indicator for general angst. So yeah, we need help. Here is my Winter Prayer to the Universe, the One Song we all share: 

Dear Universe,

As the days grow colder and shorter,  may the extra darkness offer rich soil for growth. May the falling temperatures allow us to, um, appreciate the warmth betterer? 

May there be less wintry mix precipitation and black ice and more coziness and sparkle. 

How about no black ice.

May those entrusted with our children (Betsy DeVos, I'm talking to you!!!! [Oops, did I write that out loud?]) actually have their best interests at heart. 

Likewise, may those entrusted with our only home, Mother Earth, do the same, dear Universe. 

May we - in the waking hours we can muster this season - find the strength, energy, and time to be there for each other, and to find the resources we need to advocate for and nurture our differently-abled children, selves, family, and loved ones. 

May we learn to ask for help when we need it. 

Before we judge, may we consider the possibility of unseen struggles, mental health issues, “invisible disabilities”…

May we learn not to take things personally, even as we refuse to countenance injustice. 

Can those “All Lives Matter” people make a Black friend, please? 

Might we send a contingent of willing trans persons as ambassadors of queerhumanness to all places showing evidence of small-mindedness around gender? 

Let’s get some drag queens in there, too. They could bring cupcakes from Scott Cakes! And warm coats!

Please sprinkle in some other people with differences that differ from the “norm” in these places (in whatever ways: religion, ethnicity, citizenship status, ability, sexual orientation…), bearing, perhaps, free kids’ books about diversity and inclusion, in order for peoples’ definitions of people to expand. 

Actually, can we have all of these individuals bring their families — whether of origin and/or orientation — as part of their delegations? Can we? And then partner each family with a local family, have them plan and cook a meal together,  and give them a discussion agenda that includes favorite funny movies, animal heroism stories, and, I dunno, high and low life moments? 

Thanks! Because it seems to me that when people see people as PEOPLE it becomes nigh impossible to hate. 

And, just a thought, can we get some people on the spectrum on this whole tax reform thing? Because some of us are pretty good with numbers and our “literal,” “black and white thinking” around, you know, the math aspect might be a strength for the future of U.S. civilization in this particular context. Do you want to know whether a particular change to the tax code will benefit the economically disadvantaged or the middle class? We can actually tell you. 

Come to think of it, may there be progress, however incremental, in people being fairly paid.

Also? The men in charge right now…could they be immersed in a crash course in menstruation, harassment, gender discrimination, childbirth, and motherhood? Also also, working and single motherhood? Thanks. REALLY - thanks. 

Bonus: In fighting injustice and working to empower others, may we never degrade or forget the humanity of all concerned. (That’s a hard one sometimes - healthy anger fuels change while destructive, vengeful rage destroys lives.)

See, because either we are engaging or we are withering. Bitter. And you know what? Bitter people are often cruel. I know this all too well too.

May we hold our loved ones close, knowing that life can be all too fleeting. May we make every day count, even the *&^$ ones. 

Dear Universe, we all cry the same salt tears. May we also have the mental and emotional space to see the beauty, joy, courage, and kindness that coexist with the hard stuff. 

May we retain our hope and faith. May we regain our hope and faith. 

May we find strength through love. 

Love,

Full Spectrum Mama

P.S. What are your prayers, dear reader? Feel free to share them in the comments below, or email me at jineffable@gmail.com.

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

An InLinkz Link-up

DEAR PERSONS

Dear Persons,

Z has always laughed every time she hears or reads the word “persons.”

I finally sat her down and explained to her that “persons” is a word that has a deep and complicated history. That personhood was for many millennia and in many places reserved for only a certain type of people, such as men, or landowners, or white people, or people of a certain caste or religious faith or neurology...

I explained that even though it might seem silly or old-fashioned when you read or hear that word, it’s a strong word that carries a lot of goodness and respect. That she, as a female of Chinese descent, might -- in many settings over the course of history --  not have been considered a Full Person. That even now she will not necessarily earn as much as a man, or be accorded equal respect.

We are reading Malala Yousafzai’s autobiography, I AM MALALA, together, and she is learning how hard life can be for girls and women in many parts of the world. She has already experienced instances of racism at school. Knowing she’s a Full Person gives her grounding and power to stick up for herself.

This conversation inspired me to begin starting my posts with “Dear Persons,” because my readers are dear to me, and because they are all Full Persons.

Love,

Full Spectrum Mama

MIDDLE SCHOOL* PRAYERS**

(SUBSTITUTION POLICY:

Please feel free to change the terms of any of these prayers** if they feel useful to you! For example: *“Middle School,” might become ANY school or institution or event or transition; **“prayers” might become wishes or hopes or a more formal type of prayer…

This post comes out of our Middle School Special Education Transition Orientation meeting, in which most of the parents were crying – and shared many of these concerns; it also comes out of my own fears about this transition; and from a few things G – who’s playing it mellow on this one -- has said. But I think the generalities and specifics may apply in a lot of situations.

I open with “Dear Universe” because it seems most inclusive and I love how the literal translation -- “one song” – includes and unifies this big ol’ glorious mess of a world. Please substitute God (however you mean this word, or whatever word your faith uses), or any other concept here, including “Dear me, may I do my best to ensure that…”)

Dear Universe,

May our children have a gentle transition to Middle School. Specifically,

1.      May they not succumb to the horrors of Homework –

a.       In the DOING of the Homework, may they not find it such that it is “the last straw” in a day in which there have already been enough struggles to succeed, often in areas of extraordinary challenges,  whether social, academic, emotional, neurological, physical...

May they have time, still, to be kids. May they have time to play with their families, rather than always trying to “catch up” on all these many levels – and rather than their families having to spend most of their time together waging mighty battles in the effort to compel our children to complete said Homework.

May you uplift the brave Mama of the Middle School Special Education Transition Orientation meeting who saw fit to refuse to force her child to do Homework because she chose, instead, to let her child have fun following her child’s very, very hard work during the school day.

b.      And, Dear Universe, even more specifically, in the matter of the KEEPING TRACK OF the Homework, may we all gain skill and patience in this area, for  it is immeasurably harder to get kids who are already at their limit to bring home extensive and organized information about assignments.

While we may take advantage of online and phone resources at the Middle School, may that extra step send neither we nor our children “over the edge.”

2.      May our children be undaunted and unbowed by the rigors and pitfalls of Physical Education --
.

a.       May their PARTICIPATION be unmarred by being always last chosen and barely tolerated…May all games be inclusive – and may the choosing of the teams, if teams there be, occur by fair and just and random means.

May the words of the outgoing principal at the Middle School Special Education Transition Orientation meeting, “We think it’s important for all students to fully experience this social, competitive aspect of middle school,” have been misspoken, for, when they were spoken, you, O Universe, could hear the air go out of the room. You could hear, surely, the thoughts of the people of the Middle School Special Education Transition Orientation meeting and they were: Compete? Really? Some of our kids can’t catch balls. That does not make them “less than,” but listen lady, for most of us P.E. is not gonna be a strong suit for our kids…

b.      May the new ritual of CHANGING for P.E. be less agonizing and costly than we expect. Please watch over our children as they attempt to tie their shoes, maintain a modicum of executive function, not lose EVERYTHING, put on and take off the right clothes at the right time and in the right order, not stare inappropriately, and so forth.

And, lo, though they may not succeed in these efforts, may they nonetheless not get teased in the locker room for these or any of many other possible reasons…:

1.      In the matter of our kids’ UNDERWEAR, may you ensure that nothing too awkward or inappropriate happens during the aforementioned change? Please? One parent asks, as she did of me yesterday, may we ensure that my child does not have little kid underwear on? Also, may the underwear be pulled neither way too high nor way too low? May G, for example, not wear his underwear backwards and in a total wedgie as he is generally wont to do?  

We are not asking for a trade, Dear Universe, but we do agree to do everything in our power to make sure these risks are minimized, such as the pre-departure underwear check; it’s just that the locker room itself is out of our hands.

3.      Bullying. Universe, You know this is a HUGE one for those of us with differences and/or with children with differences!

a.       May our children not BE BULLIED.

Yes, Dear Universe, we know that Middle School is the world epicenter of bullying, and we know that kids who are different get bullied MORE …yet we dare to dream that our prayers that our children not be bullied might be answered, whether by a zero-tolerance school environment, social skills classes, that one cool kid is who so cool he or she doesn’t need to shun someone who’s “weird,” some combination of these, etc.

MAY NO CHILDREN - ANYWHERE - BE VICTIMS OF VIOLENCE FOR ANY REASON, O Universe. And may this particular prayer be as unnecessary as it should be, rather than as ridiculous and unrealistic as it actually is. 

b.      May our children not be misperceived as BULLYING -- or pushed into BULLYING by peer pressure or anxiety, or by being BULLIED:

There is then the type of scenario where our kids act in ways that appear to be bullying when in fact they are just clueless…and sometimes, like my G, really large and intimidating despite being a gentle and loving lambikin.

And there’s the scenario where someone who is already struggling is forced over their sensorial or social tolerance limit to a point where they lash out in what feels like self-defense.

The overall high levels of social awkwardness and hierarchical jostling that accompany this transition make these kinds of mixups more likely and we pray, Dear Universe, that our children be kept safe from these dreadful possibilities.

4.      May the issue of varying levels of Maturity – Or lack thereof -- …combined with hormones…oh dear.

May we somehow help our children navigate this particular minefield with aplomb.

Or at least a minimum of outright disastrophes.

G and his peers on the autism spectrum may by definition have developmental delays and those, combined with certain physical developments, make for a complicated mix.  Other non-spectrum-y kids in Special Education may have similar issues, including challenges around judgment and impulse control.

Heading into a context where almost everybody is a seething mass of hormonal, social and mental changes will be…interesting at best.

Dear Universe, you’ll recall when I was a VERY young 12. Curious about sex, hormonal, but very, very innocent. G is similar, but, if it’s possible, even more oblivious. What G lacks in commonsensicals, he certainly makes up for in heart-of-gold, but I am not convinced this combo will serve him well for the next year or two.

Therefore, in your infinite wisdom and harmony may you at least try to help him and the rest of our children entering Middle School to not embarrass themselves unduly.

Please watch over our children and prevent them from seeming to be stalkers. 

We beg - beg! - that you not let them be taken advantage of. 

Also, please see that the age of their bodies and the age of their minds and emotions correspond at least slightly, both within their own beings and amongst their friends.

And may they find friends, O Universe. Even just one friend. One who doesn’t care if they still like playing, for instance, pokemon.

5.      May our children operate their Lockers –

Dear Universe, can you see our kids being really great with the whole locker thing? The whole make way directly to locker/remember the combination/get the thing (or things) that was needed from locker and/or place the thing (or things) that was no longer needed in locker/close locker/find way back to where supposed to be thing?

Yeah…no. We can’t either.

Well what about the part where someone goes with them and oversees the whole thing – we’re so sure that will go over great in Middle School. Not.

Or maybe we could give them a list of the above steps to follow (read: give them a list to lose on the first day of school)?

Dear Universe, can you please O please manage this one somehow for the sake of our dear children?

Because this is one where our fear is mighty and legit, albeit probably incomprehensible to some.

6.      May our children learn Self-Advocacy –

For we are not omnipresent – and we are sometimes, we admit, exhausted. As well, mortal.

           

If possible, may they begin to integrate, for themselves, some components of self-advocacy development, however small, however basic: what questions will I need to ask to complete this assignment? Where will my challenges be and how can I access the help I need to be successful? What are my rights and responsibilities -  here, now?

If possible, may their Executive Function improve such that they are developing in awareness of what they need and how they may best be served in their own actions and in the resources available to them…

And, whether or not our children are mainstreamed or in more specialized programs, semi-independent or not-,

7.      May the help they are given be Helpful and not Non-Helpful –

Over the years there have been periods where I would begin to see some or all of G’s work and assignments written out in someone else’s handwriting. Dear Universe, as you are no doubt aware, G is able to write. Does it take him longer to write something than the average student or adult paraprofessional? Yes. Does he have dysgraphia and other learning differences around writing? Yes. Yet having someone do all his work for him is unequivocally NON-helpful help. I suspect the paras in question were trying to be kind, or to speed things up, make things easier for all parties…In any case I know they were not intending to deprive my son of a learning opportunity. But that is just what they were doing.

Dear Universe, some of us fear that in the larger Middle School context, it might seem easier to just sort of pass our kids through the system, using precisely this sort of non-helpful (to our children) help. This would be a great loss for our children.

May our children instead benefit from Flexible Support, where sensitive teachers and helpers recognize when help is truly needed but pull back to allow students to fly on their own where they are able to fly; sometimes, when necessary, fluffing up their feathers and wings, and, the rest of the time, letting students make their own, probably imperfect but unique and rewarding flights…

May we, the staff, their peers, and their teachers balance our children’s overt needs – for security, for routine, for “success” and success – with the myriad of wonderful possibilities for new experiences and learning out there in Your Universe, Dear Universe.

Big thanks.

Love,

Full Spectrum Mama