DETECTIVE WORK

The Full Spectrums went to see a movie a few weeks ago, which is, in itself, a rarity. We went with my Meeting Friend and her family, and chose the only movie that was playing in a matinee, Mr. Holmes.

During a sad, moving part of the movie where Sherlock is really, really old and feeble and decrepit and does something pathetic, Z suddenly laughed aloud. I cringed. Perhaps she was uncomfortable, but it just felt very awkward and inappropriate...I tried to convince myself it was a mistake, but it happened again a few minutes later during a similar part. Everyone else in the theater was quiet...real quiet.  

“Good luck getting old,” said my Meeting Friend as we left the theater. As we always do, my dear MF and I looked for the bright side: “She’s very practical and realistic!” we assured one another; “Great sense of the absurd!”

On another note, the Full Spectrum children are very into any and all Secret Agent/Detective-y stuff, and were absolutely fascinated by the way Sherlock Holmes can detect things about people just through observation. As we walked back to the car, I asked them what Sherlock Holmes could know about them just by using his powers of discernment.

Z answered immediately:”That I’m a sister, and that I was adopted.”

All G had to say was, “That I’m awesome!” [See forthcoming post, “AND MODEST, TOO.”]

I wanted to hear more from both children, though I found Z’s response quite touching, so I told them, “For me, I think Sherlock Holmes could tell that I am a mother, wife, and artist. Those are the most important things to me.”

“I’m awesome,” G repeated.

“I’m mean,” said Z. Though it’s sometimes true, I don’t think mean is who Z is. I looked at her skeptically. “Well...I can be mean,” she amended.

“Don’t you want to change that?”

“What do you mean?” One thing that IS who Z is is a master obfuscator.

“Don’t you want to not be mean?”

She paused. For a while. “...Yeah.”

“Do you think you can change? I do! You’re just a kid still!”

“I think” – very matter-of-fact – “I will always be a little bit mean.”

“Why?”

“I don’t know, but I can tell I always will.”

“Well...that is something you will always have to work on then,” I assured her. “I know you can do that.”

“Huh?”

Hmm. Guess that conversation was over. (WHO, exactly, is in control all up in here?)

When I started writing this blog, I did not know anyone “like us;” I felt alienated, alone, and, much worse, so confused about parenting my two very different – from each other, from the “norm” -- children.

I felt like a failure in the most important role I’d ever had: motherhood.

I did not know, back in the day, that Z’s seemingly cruel laughter, her obfuscation, her self-proclaimed meanness are all attachment-disordered behaviors. I would have blamed myself for not raising her to be kind...I would have blamed her for being unkind and manipulative.

A number of factors (my own kinds of detective work: reading, researching, developing an online community, meeting others through the blog, finding a good specialist in attachment disorders, having a Meeting Friend) have helped me to become someone who is able to share the fruits of my detective work  in hopes of reaching people who feel as I have felt in the past (confused, alone) and feel now in the present (confused, alone, AND inspired, connected, and – every so often – just a little wise in my old age).

As for Z, if I were to name a third fundamental aspect of her identity that Sherlock Holmes might have discerned, I would say that she has a fabulous, quite broad sense of humor. That may be her, and OUR, saving grace.

Love,

Full Spectrum Mama

THANKS, MOM/THANKS, SON!

This was written for the “I Don’t Need a Cure Autism Flash Blog.” 

For those who “tweet,” please use these hashtags throughout the day on 4/2:

#idontneedacure, #WAAD

Here is a true story that illustrates how I am trying to raise my son to accept himself just as he is, and to make his own choices about how he might want to grow as a person. I was particularly moved to join the “I Don’t Need a Cure” gang because of having used these very words to my son (before hearing about the blog) just a few weeks ago:

My son G and I were hiking up a local, kid-friendly mountain with the rest of the Full Spectrums -- my Pardner and Z, my daughter. I noticed G’s extremely rosy red cheeks and I knew he was feeling drained.

I remembered having those same red cheeks. I remembered how, as a child, everything seemed harder for me – not just the social stuff (!), but physical stuff like biking or running. I would get very red and work very hard when other people just coasted along or put in a reasonable (non-grueling, -agonizing) effort...

I would try to tell grown-ups how hard I was trying, but they thought I was lazy or out of shape. I had what I now know was low muscle tone, and sensory processing differences that made it super-challenging for me to follow team play. I know it NOW because MY normal course of development resulted in higher, more “normal” muscle tone later in life, and I am now able to see very clearly that I truly was experiencing challenges on a different level than others. I think I am generally a “fit” person now, though team sports have remained out of my purview (perhaps that can be attributed to a complete lack of interest on my part).

I know many activities feel harder to my son than they do to most. While my nine-year old daughter virtually runs up the mountain without breaking a sweat, my 13 year-old son is as red as a beet, even though his general levels of fitness and activity are basically the same.

Perhaps the hardest thing for me as a child was feeling misunderstood. I’ve always accepted difference, even (mostly) in myself, but I’ve never been able to learn to countenance injustice. So I wanted to validate G’s experience, and help him feel understood, in part by sharing with him how he is “sometimes a lot like me as a kid.”

I told him that “Everything was harder for me, when I used to go on family bike rides or runs, or when – this was the worst! – my family would make me join in soccer games.”

I remembered how agonizing those times were – how exhausted I would be, how misunderstood and alien I would feel because I didn’t enjoy the “enjoyable” activities my family shared, and because I felt like they judged me for how I felt, both physically and emotionally…

“I would get super red cheeks, just like you do! I was kinda soft, and floppier and ganglier than I am now. I got stronger and stronger as I grew up. I think you will too.

“Growing up is a process, and everybody does it in their own way. I suspect that for you, like for me, it’ll take a little bit longer for some parts of your brain and body to get in their best shape.”

I explained that my red cheeks and difficulty keeping up came from low muscle tone, a physical difference sometimes associated with neurological differences that made all my muscles have to work harder. I added that it was tough for me growing up neurodivergent in a way that I don’t think it is for him because the people around him and understand and completely, unconditionally accept him.

I thought about how watching my child encounter similar experiences in a very different context has been healing for me, and how grateful I am to be able to show him some aspects of life as a happy, healthy, self-accepting (all relative terms of course!) neurodiverse adult.

We walked a little further in silence.

“Thanks for giving me asperger’s and low tone, mom,” he said, sounding sarcastic and resigned.

I took a deep breath. “Buddy…don’t you like me? Because I like myself. And I like you too – a lot! It’s not that I want you to be just like me, you are absolutely your own person. But the things that make me a little bit different make me who I am and it’s the same for you. You’ll grow up at your own pace.”

“Of course I like you, Mom,” he replied. “But I want to be strong.”

“If that’s what YOU want, you’ll have to work hard to be strong, maybe harder than other people. But you’ll get there,” I assured him. “I promise. You can do anything you set your mind to!

“And once you do get strong, you will never forget how it felt to try that hard and succeed. You’ll always feel compassion for people who are having a hard time and accept and understand people who are different. Those are really good things!

“I like us both just the way we are. We can grow, when we want to. We don’t need to be cured.”

Love,

Full Spectrum Mama

Second Anniversary Lists I: Advocacy

This time last year, we had just fought a grueling but successful battle to retain G’s IEP. He’d erroneously been tested for reading and math – his two best subjects – and been removed from eligibility because of the not-surprisingly good results of those tests…Meanwhile, he was barely able to write a word, a sentence, a paragraph…

We’d “won” that fight, with the help of his teachers and principal, following a lot of foot dragging from the district; what we still had to contend with a year ago was a relatively homogenous school environment and a child who struggled with expressing himself coherently in writing and felt bullied every day.

I shared what I learned from that intense experience in this post: http://fullspectrummama.blogspot.com/2013/01/first-anniversary-lists-i-advocacy.html. If you are looking for basic tips on advocacy, this post is the place to go. Please see the list toward the end for my pointers on dealing with bureaucracy, and IEP and 504 meetings, and addressing your child’s/children’s needs in institutional settings.

In retrospect, I can see that – much as I adore and respect the heck out of him -- beyond words!  Puh-lease!!!! -- on a subconscious level I was seeing G as in some small way a part of “The Problem.”  Now that he is in a more diverse environment, with students who are comfortable with a mix of people, and teachers and administrators who are accustomed to kids on the autism spectrum, a lot of things have eased up. 

As always, this is what worked for our family. In the balance, making the choice to move our entire existence was the right one for us. It was also a huge gamble, a chance not all families are able to make (and we have BARELY made it -- whew!) -- and one that I am happy to say paid off in our case. Autism was less common in G’s old school and this impacted every level of his experience, from institutional to educational to social. Obviously, G is still on the spectrum, but his present school is more of a spectrum too. For him, for us, this works.

And so, without further ado, my first second anniversary list:

School Advocacy II

1. Context matters. A tiny, cozy school where everybody knows everybody might be the right one for your child. Homeschooling might be the right choice for your family. Or perhaps your child will do best in a big school with lots of services and a wide-ranging student body. Maybe an alternative/private school might be your chosen option, if you can afford it, or are able to access scholarships or school district support. My point: the impact of environment can be more profound than one realizes.

2. Sometimes Change is necessary. To say that change and transitions can be challenging for our Full Spectrum would be a vast understatement. Sound familiar? If stuff isn’t workin’ out too well as it is, though, you might consider changing things up.

Little changes can matter too: does your child lose focus while doing homework in isolation (something you might’ve arranged to minimize distraction…)? Try using noise-canceling headphones in a more-busy area and crunchy carrot sticks (haha, I meant chips) to keep things lively.

Bigger changes, like moving and changing schools, obviously entail bigger risks – and possibly bigger benefits too.

Ease changes where you can with strategies such as advance notice, clear scheduling, and comfort measures – soothing (or stimulating) activities, food, objects…

           

3. Stay vigilant.  Isn’t that just great advice? Yeah, even when things seem fine: stay vigilant. Pfffft.

But -- wouldn’t you know it, as soon as I felt like the school had things well in hand I sorta…exhaled…and took a little breaky-poo? Next thing you know G is failing certain assignments and I am called in to a Meeting and then I am writing my Meeting Friend this text:

“[Censored]! I forgot about speaking up just nodded and said I will talk to [G] when in fact they did not do right by him or create an environment where success was possible. Help! Must regroup. But I am okay. Just entered brief complacent fugue state and now will triumph…somehow ;) p.s. Don’t worry. Am bemused but okay. Forgot [G] has disability.”

In this particular instance, G was failing a months-long writing project because he was overwhelmed by the combination of his classroom environment and learning new technologies and skills on the computer.  He’s at a point where he might be able to handle one of those things and still reach his potential, but not both.

So I wrote his teacher along these lines:

Dear [teacher],

Thanks for meeting with me yesterday.

I was really left with two different thoughts after our meeting: on the one hand, [G] does need to learn to buck up, get it together, ship shape, etc. but on the OTHER he does have a disability that we need to accommodate and work with to best bring out his potential.

I do feel that his failing this project because of new-computer frustration would be a shame. Clearly, he was overwhelmed by learning new skills in a busy environment, which is typical for him as well as many children on the autism spectrum.

I will work with him at home. Hope you can give us an extra week or so to whip it into shape in a low pressure-high achievement environment ;)

Thank you,

            [FSM]

His teacher allowed him to take some extra time and he ended up with a decent(-ish) grade on the assignment.

Yay vigilance!!! Just because a school gets a wide range of students doesn’t mean you won’t have to advocate from time to time…

4. Cycles: Know that there will be cycles of advocacy challenges. After a recent blessedly calm, several-week meeting-free stretch I witnessed with chagrin my Meeting Friend looking stricken while being collared by the principal at pick-up. I was unable to get to her before she rushed off with her child, so sent I her psychic and text support and planned to call her and inquire. A few minutes later, Pardner called me and said the school had called US because G had gotten “agitated” over a computer imbroglio (see above). Anyway, when I called my MF to check in, come to find out her child, too, had been “agitated” that day. Wheee.

            5. Services:

In this larger, more-inundated school, G no longer qualifies for many of the services he received at his last school. Part of this – in PT and OT -- is because of great past work by amazing physical and occupational therapists; some progress is G’s own hard work. But it’s also because the standards of qualification are more stringent. And I do worry that G will fall way, way behind again. His early motor skills and kinesthetic test scores were typically all at the very lowest end of low.  Now that he’s low-average, will he continue to grow and improve without help? Or at least not regress? Please see #3…

G no longer has a one-on-one either. This is because his classroom already has three embedded paraprofessionals in addition to a highly effective, gifted, funny, experienced teacher. Do these three have enough time to get to everyone who needs their attention? Again, see #3.

At the same time, G’s new school offers a lot of services, particularly in group-settings, that were unavailable at the small school he previously attended. I feel like G’s needs are being met in different ways, and that we are in a basic state of balance between services and mainstreaming. But I am also ready to put on my official clothes and use my lint brush and march in there at once if necessary. Luckily, the parties involved do what they do because they care about children and education, so I do feel we are all on the same page as to wanting the best for G.

If you do not feel this way, if you and/or your child/ren is/are in an environment where the powers that be do not share this best-wanting intention, and are reluctant to change, you may need to advocate more powerfully OR see #s 1 and 2.

6. Treats: I am going to write more about this in “Second Anniversary Lists III: Choosing your Battles,” but I am impressed by the power of treats.

a. Treats for Students: G’s new school uses sugar for almost everything and it works. I know, I know: sugar. Regular readers will be well-informed of our sugar aversion. I cringe every time G shows up after school with a neon-colored lollipop. But positive reinforcement – what does your child love/crave? Maybe it doesn’t have to be so ghastly? – can make the difference between a child who is functioning, even thriving, within school boundaries and one who is flailing and failing.

I know G’s lollipop represents his sitting in his seat, or not interrupting, or closing the bathroom door…and since sugar affects him less than it does me, I make the choice to allow it. I mention this in this here Advocacy piece because working with your school to put a system of treats in place for rewarding positive behaviors might really make a difference for all parties concerned.

If you can figure out what really might feel like a treat to your child (or yourself, or your student, or your roommate, or partner, or…) -- whether it’s praise, hugs, Pokémon cards, screen time, or something else, perhaps something unique (but it must be something

Clear, and

Consistent)

-- you can begin to assess whether that individual responds well to this sort of system.

            b. Treats for Advocates: sometimes necessary.

            c. Treats for All, for No Particular Reason: also sometimes necessary.

Regarding these treats prescriptions, remember: Full Spectrum Mama is a Doctor [of philosophy].

Strong and effective advocating to you,

Love,

Full Spectrum Mama