Tuesday, January 9, 2018

"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!

Tuesday, December 12, 2017

A WINTER PRAYER

Hate cannot drive out hate, only love can do that. 
Martin Luther King Jr. (from Strength to Love)






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 nee
ds 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!

Tuesday, November 14, 2017

ARE YOU SPOILING YOUR CHILD?


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 nee
ds 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!


Tuesday, September 12, 2017

HEY, YOU!

For Ozzie



Hey, you - you, who just got a label after years of searching for answers about yourself.

Hey, you - whose child or loved one just got a diagnosis.

Hey, you - who just gave birth to a child with a difference and/or disability.

Hey, you - who suddenly feel like it’s all too much, who don’t have it in you to cheerfully be different today. 

Are you spiraling? Of course you are. Do you feel like your life is being eclipsed? I’ll bet you do. 

Can you breathe? Just stop, take a moment - one moment! - and breathe. Between you and me and the fencepost, let’s face it: even one moment can be a lot to find what with all this diagnosis/labeling/disability/difference navigation business! But I am here to tell you that it is possible…Just the one. Try just that one moment of pausing to breathe.

(I was a Yoga teacher for a long time and one thing I learned was to teach only what you yourself practice. All that self-care stuff sounds great to me but…really? Who has the time and/or money? I know, though, that if I can find one moment to breathe you can too!)

Here’s the thing: there’s nothing wrong with you/your child/your loved one. It’s no one’s “fault.” Yes, the world wasn’t really designed for some of us - and there IS something wrong with people who discriminate, IMHO. But you (your child/loved one)? Perfectly imperfect just as you/he/she/they are. 

Sure, in time you/your child/loved one may benefit from certain interventions - whether medical (surgery, medication…), therapeutic (physical, psychiatric…), educational (IEP, tutoring…), etc. - but so much of that is designed to help us “fit in” to the world as it is, not necessarily as we are. No judgment!  Every individual and family must make their own choices! However, please never feel that these things “fix” you/your child/loved one; instead, they help us to function better in a certain, particular type of context

Here’s an example: students with ADHD can thrive without any medication or behavioral finagling in a variety of learning environments, many nature-based, but typically not including a standard classroom environment. Yet the standard classroom environment is what they usually encounter, which may lead to any number of challenges, including issues with self-esteem…

One of my best college friends and I were a tiny bit tipsy-ish one night and thought it would be really funny to call out to passersby with the hilarious words, “Hey, you with the internal organs!”  (Good come on, right?) 

This particular friend has had her challenges in her parenting journey, I can assure you, but her humor and accepting attitude have served her well.

Because hey, by the way, even if you DON’T have internal organs, those of us who have suffered for our differences and/or those of our loved ones tend to know and live true inclusion and thus we respect, accept, and honor you with no judgment regarding your internal organ status.

See, we’re all in this together - something I think those of us who’ve had to fight for our own inclusion or that of our loved ones realize early on. The fact that not all people see things this way is sad both for us and for those who don’t see this truth. 

So hey, you, you reading this post - either with your eyes or another organ, through being read to, or an assistive device - you are stronger than you know. And you are not alone. Wait till you meet some of these characters who get it, who’ve been there. 

Deep breath in, deep breath out...Welcome!

Love,
Full Spectrum Mama


P.S. The Bloggers in this Blog Hop might be a good place to start: 


Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special nee
ds 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!