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!

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MIDDLE SCHOOL PRAYERS, REVISITED

As people and as parents some of us are lucky enough to have a perfectly generous level of empathy for others as well as a balanced perspective on events. Others of us learn to understand others’ feelings and have perspective on our own lives the hard way(s).

Last year saw G’s heretofore good grades plummet, but he was accepted and happy at school. It was clear that G had chosen, consciously or un- to put all his energies into that realm of his life that had for so long been an area of suffering. For a “typical” parent with an academically gifted kid this would be a disastrophe but the perspective and experience I’ve gained (kicking and screaming) about my kid show me that a decline in grades is a small price to pay for the gains he’s made in confidence and self-esteem.

By the end of last year, G’s team had begun to identify effective strategies for executive function and focus in order to improve his academics; and I am very much hoping we can bring more balance between the social and the academic this year in 8^th grade. That’s going to be a tall order, but at least I am only mildly terrified this year. (Sure last year was a social success, but there can be so much drama in middle school, for middle-schoolers of all persuasions, and peer-group rejection is so common.)

Here are two posts I wrote around this time last year, in case they are of use to any readers:

            This one is about my deep terrors for my son as he entered Middle School:

                        MIDDLESCHOOL PRAYERS 

This one is about trying to find other kids who might be extraordinarily challenged entering Middle School:

                       TEAM FRIENDLY FACE 

And here’s an inspiring thought from a VERY WISE Dad I know and love, from his facebook page (posted with permission, lightly edited for anonymity); it helps me remember that I know my child and I know what he is capable of...:

Happy birthday to my son [name]. Apologies for this post, son, but “I had to say it.” The year that he was age 3 I was on lecture tour. In Indiana he was the only black child in childcare. After my talk a teacher said, “I’m sorry to tell you, sir, but your son is slow.” The next week in New Hampshire a different childcare teacher said, “Wow! Your son is brilliant.” I’d already played a significant role helping parent my three much younger brothers and [name] is my second son. I knew he was blessed. Now he has a bachelor’s from Princeton and both a Ph.D and J.D. from the University of Virginia. At no point did I give permission to some stranger to define my child (or his 3 brothers). If you’re a parent, grandparent, teacher, friend... I suggest you follow the same route. You have to nurse greatness to find greatness.

Obviously, blessings and greatness come in all stripes and do not necessarily mean academic blessings and/or greatness, but I plan to nurse the academic aspect of my son better this year, along with his great heart -- and I plan to make sure the rest of his team does the same.

Wishing all parents and students and teachers and staff many blessings for a smooth transition into this next school year. People who are already fully-equipped for school should not be posting that on facebook and making the rest of us feel inadequate.

Remember, if we do not believe in – and nurture! -- the unique greatness of our loved ones and children, who will?

Love,

Full Spectrum Mama

TEAM FRIENDLY FACE -- UPDATE

I met with the head of Special Education at our Middle and High Schools yesterday, and -- after she invited me to join the local ASD task force (whee!) -- she agreed to pass this email along to families through the necessary channels. We realize that so many families are overwhelmed, but I am hoping to get some response. We are all about TEAM FRIENDLY FACE!

Here is the email:

Dear Families,

It occurred to me at the orientation meeting for families with students entering [our Middle School] with support from the Special Education team that it might be helpful and beneficial for our 7th graders to have some additional "Friendly/Familiar Faces" to encounter in the halls and classrooms next year. 

Would anyone be interested in maybe meeting up for a picnic, one on one, or as a group? At the pool? Or just getting together in whatever way suits your family? 

The transition to Middle School can be hard on most children. But our children face additional challenges. This might be a way to give them just a little more in the way of positive connections as they enter 7th grade. My son is the type of kid who others think is "different" and sometimes has a hard time fitting in. But he is a WONDERFUL, friendly person and would befriend anyone who needed a friend regardless of "difference." 

I would be happy to be the contact person/organizer on anything that seems promising in this area, over the summer and into the school year.

Thanks so much for your time,

[Full Spectrum Mama (G's mother)]

Stay tuned for the Sensory Blog Hop next week - lots of famous, fabulous sensory bloggers blogging sensorially!

Love,

Full Spectrum Mama