HOPE

Dear Persons,

Last week, I took my daughter Z on a mother-daughter trip to Emily Dickinson’s home. Since Pardner is a chef, we have lots and lots of time together, but are almost always with her brother, G. The outing — happily anticipated by me —  involved a lot of side eye and bored resignation on Z’s part. Parsing which aspects of her attitude belong to rote teen sullenness, which are characterological, and which are attachment disordered is pretty much impossible, so I will just say that she was not terribly impressed. (She was “sort of ok” with the parts of our “adventure” that involved food…)

We were able to have this delightful alone time because, this spring, G got into a federal college prep program for underprivileged and/or underrepresented teens that provides several residential weeks of classes and other enrichment in the summer. 

I sobbed for days when G got accepted into this program. It’s not that I’ve never had allies. There have been lots of angels along our path (and some less-helpful people as well, to put it mildly…), especially certain teachers and helpers in his schools. But this program is comprehensive, and year-round, and it explicitly aims to get kids into college who might not otherwise go. 

I’ve always seen G — with his amazing ideas and creativity and interesting, interested mind —  as someone who’d have a wonderful, inspiring time in college; but I’ve also known it would be a huge stretch, given his learning differences and our income. I’ve been sad about that pretty much since G’s diagnoses.

For the first time, I felt like  a group of people who could really HELP G also really GOT and SAW him. After so many years struggling to get school staff to follow his IEP, or see him as more than just a label, these people were going to spend hours and days and weeks working with G and other teens to build the exact skills needed to get into and attend college!

The program was also going to help…well…ME. This enterprise of advocating for a child with learning and social and physical differences and challenges can be all-consuming. There have been many, many times when I have felt like other people were talking about a different kid when discussing G — and that they basically had never even met the child I knew…

Knowing that this program was going to help me did two major things: it allowed me to finally admit how much I NEEDED that help, and it gave me HOPE. 

Seriously, dear readers, it was a revelation to me how lonely and afraid  I’d felt in this endeavor — so much so that I couldn’t even acknowledge those feelings until there was something to alleviate them. I mention this because you may be in the same boat and I hope you, too, can find that thing or those things that uplift you and yours.  

In the weeks leading up to his first departure, I was increasingly worried as G failed (as always) to brush his teeth unless supervised or shower unless coerced, evinced literally no executive function whatsoever, and had an end-of-semester 9th grade experience in which both his grades and behavior (at home and school) could have been more than a scootch better.

In his first week at the program, self-regulation issues got the better of him. I was barraged with emails with innocuous yet terrifying headlines like “Update,” and “Checking in.” My Meeting Friend — having endured such periods of uncertainty and fear herself when her child was on tenuous ground in various programs — helped me survive. She gave me hope. 

Together, G and I and the staff of the program came up with strategies (including having no phone whatsoever) to assist G to fully participate. We gave me hope. He’s in the third week of the program and so far says it’s “fun” (his highest compliment). 

And Z? She’s doing her own camp, where she can be surrounded by other sour teens. I am pretty sure she’s having “fun” too!

Figure I - “Lego Construction Representing Unity and Difference” (when G saw I was working on this blog post he made this for me, saying, “Everybody expects Lego stuff to be square and this is not - it’s different. And the black and white together represent unity.”)

(Figure II - “The Usual Square Lego Form”)

It’s a little bit of a vulnerable thing, to allow oneself to hope. There have so far been ups and downs, but I’ll take it. 

I shall leave you with this poem, by a woman many people speculate may have been on the autism spectrum — and who certainly was both extremely “different” and successful in her own ways. 

         “Hope” is the thing with feathers 

         By Emily Dickinson

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.

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 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

Suite: Shorty Hedgehog Eyes

I. A List of Who Can Stand in Front of Me, and When

Z was holding a scrap of paper at pickup the other day. From a quick glance, I saw there was a dividing line drawn down the center of the paper, with ten or so names on either side. Underneath this was another line with two names below that one, and some numbers. 

“Whatcha got?” I asked, curious.

“A list of who can stand in front of me, and when.”

“Oh.”

II. The Sad Fairy and the Broken Fairy

We have an iron garden fairy with downcast eyes and a sad expression. She was a gift from a dear friend and has lived, with her friend Hunk of Rose Quartz, on a nice stump in our yard for some time.

We are preparing to move and I brought up the fate of the sad fairy with Z: “This fairy is so sad, maybe we should leave her here for the next people and then she will get happy.” Part of me thought maybe we’d be leaving some of our travails behind with the sad fairy.

Z looked at me with horror. “No, Mama! She wants to come with us! I will take very good care of her and find her a home in our new home so she will feel better.”

Although I’d considered abandoning her as well, I also packed up the painted resin garden fairy with the broken wing.

III. Hedgehog Eyes

“That seagull is a girl,” G announced.

“How can you tell?”

“It has the eyes of a mother.”

“How can you tell?”

“Well,” G explained, “it just has a certain expression. There is a look of love in its eyes. That’s ‘the eyes of a mother.’”

This, from someone who has a hard time telling similar-looking people apart – and who generally cannot read facial or body language, we-e-ell, verymuchatall. Traits which, basically, did not fall far from the proverbial mama tree.

The first night of being Z’s mother, I looked deeply into her eyes as I tucked her in. I have never been big on direct eye contact with adults but children, especially babies, seem to look through their eyes in non-threatening/-confusing/-overwhelming ways. Z’s eyes were unfamiliar, alien, so round and black that the first thought that popped into my mind was “hedgehog.” My second thought was, those are – beyond the shadow of a doubt -- the eyes of my daughter. They were bright and a little fierce/scared like those of a wild animal that might, with care, be loved into feelings of trust and safety.

IV. Team Good

On Election Night, G was goofing around at the dinner table, cracking himself (and Pardner and me) up with talk of “Demo-Craps” and “Re-Butt-licans,”(the finer implications of which I hope escaped him). Sometimes, though, G gets “stuck,” and he would not stop saying these words despite my telling him he was not using language suitable for a seven-year-old.

Z covered her ears and, with her clear, dark, never tame but perhaps increasingly civilized eyes, looked right into mine.

“That is not appropriate, G,” she announced, holding my gaze, “and I am not listening!”

Since I am Z’s primary caregiver, she focuses a great deal of oppositional energy on me. It was such an incredibly nice feeling to have a moment where I felt she and I were so clearly on the same “team,” a brief respite where she felt safe enough to let down her defiant defenses and join with me in an effort to give her shelter – even if that shelter was merely from a grody eleven-year-old.

I think she felt it too. Later, she wrote me a letter, “thak you for that diner” [thank you for that dinner] and signed it “love form shorde” [love from Shorty]. 

V. The Hope of a Mother

When glimmers of empathy and Do-Right shine through the daily power struggles they are a balm for the Full Spectrum soul.

Z showed me we have plenty of love and caring to share with every member of this forever family, even those of us who might be referred to as imperfect…or inanimate.

She’s showed me that although it may take a little longer than we’d like, a frightened creature can learn to trust – and that with that trust comes the possibility of walls coming down.

I’ve begun to hope that, in the fullness of time, Z will use her substantial magnetism and undeniable, very tall and large will for the sake of goodness and justice.

I leave you with this Emily Dickinson poem about hope. It often pops into my mind both when I feel hopeless, and, like now, when I feel the power of hope.

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"Hope" is the thing with feathers—

That perches in the soul—

And sings the tune without the words—

And never stops—at all—

And sweetest—in the Gale—is heard—

And sore must be the storm—

That could abash the little Bird

That kept so many warm—

I've heard it in the chillest land—

And on the strangest Sea—

Yet, never, in Extremity,

It asked a crumb—of Me.

Emily Dickinson

Love,

Full Spectrum Mama