"I AM VERY FRIENDLY"

Vocational Rehabilitation is a federal-state program that helps people with differences/disabilities overcome barriers to employment, gain work skills, find jobs, and build careers.

Our local Voc Rehab office recently started a program called “Linking Learning to Careers,” which works with differently abled high schoolers to develop job skills and connect school work with work-work.

When G was filling out his application, he had to answer some questions about his skills and future plans. 

One question was “What strengths do you bring to school, work, and your future career?”  

G wrote, “I am very friendly.” 

Figure I — “I am very friendly.”

My heart sank a little. “Honey, that’s not…” — I looked at his little [huge baby man] face — “Never mind.” 

I almost began to spiral on that one, but I didn’t say anything. I want him to feel confident and value his own strengths, even if they might be seen as somewhat irrelevant by his mom — or completely useless by a future employer.

G and I had been participating in fundraising efforts for a school trip he wants to go on; and I’d been working on a calendar raffle handout that the kids could use to sell tickets. The day after G completed the Linking Learning to Careers application, I finished the calendar handout and students began to sell raffle tickets. 

That very day, G went out and sold all of his raffle tickets within an hour.

In the end, he exponentially outsold every other student in the group.

Figure II — Friendliness + Initiative = Success

Here’s how he explained it to me: “Mom, I’m on the spectrum, so I don’t know when to stop. I just keep asking!”

A few days later, G and the other runners received their participation awards at the end-of-season track banquet. The coach spoke a bit about each student. When it came to G, he said, “When we go to meets, [G] knows more people than the entire team combined.” 

There you go, I thought, there are those skills of friendliness he brings to school, work, and his future career…

G really, really wanted to go on that trip — and he made it happen. Heck, he wanted friends — and now he is friendly with hundreds of people. 

Sure, there are things I wish he would make an effort with that he doesn’t yet grasp the importance of, but when it really came down to it, G’s motivation and initiative helped him use his skill of friendliness to be truly successful. 

I hope that will continue to be true as he builds independence.

Our children (and selves!) with differences have amazing, sometimes-hidden or non-obvious gifts. These gifts become operationalizable — and that’s just sociologist-talk for making dreams come true — when fueled by real needs and wants.

This experience showed me we can all achieve success if both the success itself and the means of achieving it are meaningful to us and allow us to implement our unique skills. 

That might sound kind of basic, but it was a revelation to me. 

And it’s changed the questions I’m asking G as he moves out into the world. 

Instead of trying to ask questions that instill a “realistic” worldview and attitude — such as “Do you realize people how many hours you would have to work to buy those Magic the Gathering cards?” —  I’m wondering:

What are you passionate about? 

What do you truly want? 

What do you need for health and happiness? 

What unique skills do you bring to the table? 

AND

How can you connect all of these to live your best life? 

But honestly? I think G was way ahead of me on this. I was basing my approach on fear; while he bases his on hope. 

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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"REAL" AGE

Dear Persons,

If you have a child or children, do you remember when your first baby was a newborn? Remember that feeling that your life had changed irrevocably and the terror of, well, anything and everything?

Then your child starts to become more mobile and you wonder, what was actually so hard about that baby who couldn’t go anywhere or reach beyond the ends of their arms???

Around this stage, you may also encounter the added bonus of “non-typical development,” which adds a whole ‘nother level to the process. 

Next, usually, your child enters the school system and a whole new batch of fears kicks in, right? (People who are reading this from the perspective of the child and not the parent — or from both positions — may even have memories of this time.) What was so, sooooo hard about the days when you could kiss every boo-boo and make it go away? When learning consisted of stacking blocks and finger painting rather than specific and regimented tasks that might or might not be suited to your child’s learning style, abilities, and/or neurology? When social interactions consisted of taking or sharing playground trucks, healthy snacks, and dress up costumes? 

And then, really suddenly, people, the end of high school looms. I actually find this next stage of transition the very most terrifying of all (I know - aren't I encouraging?). 

Over the years, as I have gotten to know my first child as a human being, my love has grown exponentially from the more-than-I-ever-could-have-imagined level I felt for him as a newborn to There Are No Words. 

And, over those same years, my son has grown — but not in the same ways as his typical peers. He was a giant baby, 110th percentile (which means only 1 in 300 were his size), but didn’t talk much until he was at least three. His apparent physical age far surpassed his actual physical age. People would think he was four or five when he was two, and wondered why he didn’t speak. When he was four and we went to China to bring his sister home, people thought he was ten. They laughed hysterically to see this ginormous child in a stroller (it was 104-degrees and walking was sensorially too much).

Now, intellectually, my son is probably quite a ways ahead of most of his peers. Hormonally, he is right on par. But socially, or common sense-wise? He’s far, far younger. 

We recently visited friends in Cambridge, and G (16) played at length with an eight year old who is also on the spectrum. The other kid’s parents also had a 15 year old, but we all agreed the younger child was a better fit because their 15 year old was “much older” than G. It was wonderful, if inevitably slightly painful,  to be having this conversation with people who very much approached the whole matter from a perspective of total equality and inclusion. 

My love for my second child, my daughter, has grown similarly; and she, too, has grown —  in most ways typically, but she has her areas of difference as well. For example, she was in diapers until she was four years old, which I found exasperating until we figured out that — because she had been in an orphanage — she “needed to be a baby a little bit longer.” When we figured this out, it really helped her to have words for her feelings - and she learned to ask for other things that helped her in this regard, such as being carried or held in her baby sling (she was still tiny well into elementary school). 

My daughter’s emotional age seems quite a bit younger than her social age, since she is the most socially-adept and -powerful person I know. Her common sense “age”? A million. 

How can we assess and address actual, “real” age in effective, accepting ways? 

I recently heard about “the two-thirds rule:” apparently, many people on the spectrum may be seen — as compared to their peers — as developmentally about 2/3 of their biological age. This notion helps in some ways, as I observe my son’s atypical development and hope that he will eventually be able to achieve independence and everything else he wants, much of which seems very far away right now. It makes sense for me, too, since because of my divergent neurology (and perhaps also because of childhood and adult trauma) I only started to integrate and understand some very basic things about life — things most people “get” much earlier — in middle age. But it also seems like a massive generalization and perhaps might also be perceived as a little patronizing. And I don’t think most developmental models incorporate areas in which my son truly excels way beyond most teens, like, among other things, kindness and compassion.  

Once again, I don’t have “the answer.” Certainly, estimating age for a bunch of different categories like those I discuss above (intellectual, social, practical/common sense, hormonal, biological, physical, emotional, developmental, compassion/kindness) and then taking an average of these to estimate someone’s “real” age won’t work. As well, every individual is different, and every stage of life is different for every individual…We might well view age as very amorphous and multiple, and even refer to individuals’ “ages” instead of a single age.

What I do know is that it’s important to take a nuanced approach to “real” age. We need to celebrate and presume competence in areas of maturity and independence, build strengths in areas that are still developing, and accept that some of us will always have differences - whether they render us more advanced or less so - in terms of our skills and capacities. 

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

ARE YOU SPOILING YOUR CHILD?

Dear Persons,

I’ve been told — by people I respect, people I love — that I am spoiling my child (and I’m sure plenty of others think the same thing). 

Does this happen to you? It’s infuriating! 

At the same time…I get it. 

Figure 1 - Perceptions of Spoiling

Here are some sample phrases I say to my son every day:

“You’re the greatest!”

“I am so proud of you.”

“Do you know have a heart of gold?”

I believe that my son, who is on the autism spectrum, and has ADHD and other learning, neurological, and motor differences, needs to hear someone say such things about him. 

True things!

Am I building him up too much to overcompensate for a world which often devalues those with differences? Is he spoiled if - partly because of the ways I celebrate him, and in spite of his tough times in many realms (social, academic…) - he thinks he is all that and a bag of chips? 

Some people think so. 

When chore time comes around, because he has significant challenges with executive function (as well as focus and fine motor stuff), his chores are more simple than those my daughter performs.

Is this fair? Is he spoiled in what I ask him to do? 

Some people think so. 

Parenting two children who possess extremely divergent strengths, I feel Fully qualified to state that as parents we know what our children can and cannot do.

But we do need to leave room for them to grow - and sometimes push them to do so. 

I want my son to feel good about himself. Apparently that (rather counterintuitively) involves sometimes letting him take chances and fail. Offering constructive criticism. I’m working on these. Trying to grow myself...Self-reflection is one of our most important -- and hardest -- practices, both as parents and as human beings! 

I desperately want my son to develop practical life skills; but he’s developing these at his own pace. Could I sometimes ask for more from him? Probably. Still, people with developmental differences…well, they develop at their own pace. Some of what people may see as spoiled might have to do with my child not “acting his age,” because, on some levels, he essentially isn't his "age." 

My parenting purposes here - helping my son feel good about himself and helping him develop life skills - actually seem to sometimes be at odds.

See, it’s such a fine line, this parenting of children with differences. I hope I’m doing it right, but at least I know I’m doing the best I can. Dear readers, I know you are too.

Figure 2 - Venn Diagram of Spoiling Factors

Are you spoiling your child? Am I? I don’t know. (Sorry if you thought I had the answer!)

I just want my children to be as healthy as possible in this zany world. 

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

AQUARIUM: FISHY?

At G’s last IEP meeting, someone suggested he join a Social Skills/Pragmatic Language group that was starting nearby. If you are a parent of a child with differences (or a child with interests for that matter), you know how expensive activities (therapeutic and non-) can be. The fact that this group was FREE, because it was somehow part of a graduate program, caught my attention. I signed G up pronto. So far, we have been to three meetings and G has really enjoyed them. The boys (all boys…) play games and build things together and practice learning about each other and asking one another dialog-producing questions. Maybe the best part of all is the lack of eye-rolling: no one in this group has that developmentally-appropriate, neurotypical tendency to roll their eyes when someone acts “different.”






During the last meeting, the director of the program came into the waiting room and informed us that we were welcome to “watch the group” through a one way mirror. Apparently, this had been an ongoing activity for the graduate students and faculty involved, and was now an option for parents. I joined some students (and/or faculty) and other parents behind said mirror as they watched the meeting. It felt a little bit like looking into an aquarium. From time to time, people would comment, stuff like, “Oh, watch him, he’s really communicating,” or “Fascinating: watch how he…!” Several were taking notes.






I felt like the children were specimens in that aquarium. Without being ungrateful for the pleasure and – perhaps – learning that G was gaining from the group, as well as for its being free of charge, for the very reason that it was “educational” for graduate students, I nonetheless felt both creeped-out and horrified.






I didn’t want to undermine the class by making G feel funny about it, and I support the program if the participants find it beneficial. So I sent this email to the director of the program over a week ago:






Dear [program director],


I hope this finds you well.


I was a bit uncomfortable watching the kids in that context and wondering what you tell THEM about the window/mirror? If it's not too much trouble,


Sincerely,


[Full Spectrum Mama] ([G]'s mom)






I haven’t heard back.






I am all for scientific research, whether around health, genetics, disease, sleep, diet…autism…It can be informative, fascinating, and helpful for those who need or want help (this latter is a key distinction). As an academic, I can on some level understand and even accept that we need real live autistic people to learn about autism. Same for “autism awareness” (April is Autism Awareness Month), in that for people to accept autistic people as equal fellow human beings it’s perhaps best to get to know – in a non-awkward or –contrived or -condescending fashion – a real live autistic person or two. Shouldn’t be too hard what with the new statistics, right? …RIGHT?






Let’s also assume that everybody’s heart is in the right place in all of these endeavors from the Social Skills group to the folks who tout “Autism Awareness” to those who are skeptical thereof…






My not wanting G to be a “subject” of study could be NIMBYism, except – I like G just the way he is. In other words, I/we are not looking for scientific findings that will show us how to make G “right” or “better,” he's just practicing hanging out with some kids. His IEP team felt he needed help with social skills, this group came up, G liked it, end of story.






As a mother, and as a person on the spectrum myself, I can’t shake this de-humanizing aquarium image. And I can’t help but feel that if this kind of observation is "normal” there are some other groups I’d rather see put in an aquarium. Politicians, in general, come to mind. Abusers. Bullies. Mean people. What makes them tick and how can we cure them?






To be continued when I hear back from the program director…I hope.






Love,


Full Spectrum Mama