Tag Archives: special needs

Valentine’s Day

14 Feb

(the bottom one is the lesser or two weevils) 

Hello Friends,

I wanted to wish you all a Happy Valentine’s Day.

Oh, stop your groaning and eye rolling.

I love Valentine’s Day.  I love the simple, bold graphic of a bright red heart,  and the funny visual of a chunky baby armed with the sort of gear that could fell a sizable forest critter. But I’m not an obvious die hard romantic (I am, though, a Die Hard romantic.  Seriously. Cue the film and I get the warm fuzzies and tingles all over.).

I suspect I do have a romantic side. Lust and love,  and execution of the two (take that as you wish)  I am familiar with,  but just not terribly familiar with the before and in between stuff. I have been in a legally binding relationship for 17 years (OK, so maybe I’m having a little bit of bitterness) and got to that legally binding bit after of few years of 80’s sitcom character will they-won’t they lust and one good summer which ended up with him in LA and me on the east coast before things moved forward from there).

For ages I thought typical Valentine’s Day behavior was to be bitter. All the cool,  funny girls seem to rock the bitterness.  I was the cool girl hanging out with the guys (until I married one them) so to try to fit in,  I learned to drink them all under the table and to not seem like I had defected from the ranks of the enemy or,  even worse,  might be a double agent of some sort. 


When I dropped my son off this morning,  I noticed that the only people who seem to get genuinely excited about Valentine’s Day (other than that one super enthusiastic teacher or coworker who shows up completely encased in heart themed paraphernalia)   past elementary school are the popular girls of middle school, and while I remember them from my childhood and remember feeling left out of all of that social stuff, I also feel sad for them because they are mere millimeters away from the fall off the cliff, to join the rest of us bitter, sarcastic beasties. But lately I have started to suspect that I am just a bitter,  sarcastic beastie as yet another mask,  to blend in,  so that nobody finds out the embarrassing truth about me.  I think I may be a romantic and the kind of gleefully optimistic being that keeps going to pet the bear,  even though at this point it has left me only bloody stumps with which to caress it. 

I remember spending hours, over days, making Valentine’s cards from scratch for every classmate, all of my teachers, Joan The Bus Driver, the kids on the school bus, friends who were in different classrooms (though I was a Valentine ninja handing those out as I was terrified of making anyone feel left out. I always had a few extra, just in case I was caught. I had the whole thing covered.) , my Popi (pronounced like “Poppy”. My mom is German and spelled it Popi when I was little, so when I think of him, I think of him as “Popi” because of the whole autism-synesthesia-visual thinking gift basket I am blessed with), my dad (pronounced the usual way)… Even Bruno (my first dog), Penny (my second dog and best friend through the rough tween and teen years), and Pogo and Yellow (my cats).  I even made Valentine’s for my dolls (and gave them Christmas presents.  Oh shush, we lived in the woods without other kids nearby and I am an only child.  It was “give gifts to my toys” or “become the unibomber”. I think I did ok in my choice.

My mom would come up with an idea for the cards I would make, each year. She would gather the supplies, make a prototype, and then stand over me clucking her tongue on the roof of her mouth and hissing to correct anything so much as a hairline shift in the placement and gluing (or inappropriate amount of glue), chain smoking, and eating herring in cream sauce right out of the jar. To be fair, the bit about right out of the jar is highly unlikely.  Everything was very proper growing up, and she would be mortified if I thought she ever consumed anything right out of the jar, without properly plating it (using a specialized dish and utensil made only for serving and consuming the jarred variety of herring in cream sauce).  I just remember the smell of pickled fish when I think about it so there was herring in cream sauce (not sardines. That has a distinct odor, in my memories. Again, synesthesia meets a multisensory autobiographical memory and means memories I have access to are so complete I can feel the air, smell things, taste things, sense temperature, feel and see the quality of the light. It’s a gift. It’s a curse. I’ll write about it sometime in the near future.).

There was never any glitter.  Glitter was too messy. Paints were not often used for the same reason.  I found a video from my 6th grade year (I was 11 so it was 1986) and I wanted to do very 1980’s themed “splatter paint”.  You can hear the pain and anxiety in her voice as I flicked and dashed thin ribbons and commas of easter egg dye over the hard boiled white forms, in the kitchen sink, surrounded by paper towels and plastic.  She feared messy.  My dad feared messy. I still am a hands on, make a mess and worry about it later person.  They really should find a way to test for that stuff at birth.  Yeah, I know it skips a generation in most biologically related families, but it would be nifty to give potential parents turning to adoption at least that convenience/nicety.

The anticipation of making the cards was always a rush of crisp air and cotton candy (a tart strawberry with a bare hint of vanilla sugar and a drop of sweet cream).  The actual making of them was always a reminder I was not as good as she was, and I never would be (I got over that. But it took decades to be me), but I so looked up to her.  I thought she was perfection (yes, even with the clucking of the tongue, the chain smoking, the endless need to control all she perceived as her domain, and even the copper and warm iron, briny fishiness of the herring in cream).

Then would come the day of reckoning. Valentine’s Day.

I would actually skip down the hall to breakfast, that morning.  Breakfast was not any different than usual, though there would be a small, thoughtful gift and a card from my mom and dad (that was always a surprise to my dad, as were Christmas gifts. I still enjoy watching my dad’s face as Alex opens things because his reaction has more childlike glee than Alex’s more reserved response (Alex needs time to process everything. It doesn’t mean he’s not happy or grateful or excited, he just needs to process that so he can express it.).  This was an era long before Pinterest, so no heartshaped waffles or pancakes.  (I usually had a glass of orange juice and cereal mixed with yogurt…I was particularly fond of Kellogg’s Sugar Frosted Flakes (that was before they dropped the Sugar from their name) mixed with applesauce.)

I would skip and hop down the long driveway with my mom, to the bus stop.  She always dressed me like I was her personal doll.  That meant that the other kids wore jeans (dungarees!) and sweatshirts or tee shirts and sneakers.  I went to school in a skirt or dress, stockings (OMFG. I still can’t cope with anything acrylic knit. Wool doesn’t bug me as much as acrylic knit. GAH. I’m itchy. I have to go shower just thinking about it, to neutralize the tactile memory.  Be right back.)

Where was I?  Oh.  I would wear a blouse or turtleneck (the memory of squeezing my Brobdingnagian squash through one of those nearly sets me back to my own birth, albeit without the magnificent neonate form which is built for that sort of journey). Sometimes I would wear a cardigan.  And mary janes, saddle shoes, or sandals (I remember requesting penny loafers at some point and I think that was when she started to realize the whole “choose your battles” concept which greatly increases the likelihood of surviving adolescence and the transition and differentiation into adulthood, for all parties involved, or in earshot of, those delightful moments).

On Valentine’s Day, though, she would make sure I had red or a heart on me somewhere, even if it was my hair clips.

I’d dance around at the bus stop, just giddy to give everyone I knew the little cards to let them know that they matter.  It never occurred to me to not make them for the kids who were horrid and bullied me relentlessly. Valentine’s Day was, to me, the day of love and acknowledging the presence and impact of these people in my life.  I was aware of that from the start.

And in 4th grade (at C.E.T. in Croton, NY.  I had Mrs. Lebowitz, or “Lebo” (pronounced “LEE-BO”).) I found out that I was one of the only ones left who still felt this.

Lebo let us go, one at a time, to the big bank of cubbies, to play “mailman” and distribute our hearts and cards.  I was in the middle of the alphabet (“M”), and I dug my nails into the wood table top and my toes were curled up that those dreadful acrylic cableknit stockings felt like they were going to leave cable knit patterned bloody slices on the fleshy, pink front tips of my toesies.
When it was my turn, I skipped along the stacked row of cubbies.  I didn’t just make enough Valentine’s for everyone, I wrote a nice message in the card and put their name on the actual card and the envelope.  It just didn’t occur to me to alphabetize them, but I enjoyed the sorting (I still get all zen when I sort or alphabetize stuff. I believe working at bookstores and volunteering to reshelve books at libraries during college kept me sane as it was a pause in the sensory overload).  Each mailbox (I insisted on referring to them as mailboxes, confusing classmates and teachers alike, throughout my years in classrooms which had cubbies) got a card, with a chocolate heart carefully glued to the front.  That year, my mom had chosen chocolate hearts, snug in the semi-shiny red foil which highlighted the beveling and the scalloped edges.  They were not supermarket or card store chocolates.  They were good chocolates.  I was careful to only take the cards, with chocolates affixed, from the red basket my mom had put them in for transport to school, only when I was squatting low at the target cubby or already on tip toes for the higher cubbies because I wanted them to be perfect and not risk melting the curve of one of the sausagey finger tips of my chubby hands into the surface.  I slid the last card and chocolate into the recipient’s mailbox and I stood back, red carrying basket knocking against my knee.  I surveyed my work and deemed it complete.  I smiled, turned on my heels, rocked on them with happy toes pointing up and went back to my seat just electric with the anticipation of my classmates seeing the effort I made and how much I cared for each one (even the meanies).

Near the end of the school day, we were allowed to attend to our own cubbies. I waited a few moments as classmates retrieved the sweet sentiments and flood of red, pink, and white paper so carefully, kindly, and generously prepared by other classmates.  I wanted to see one of their faces, any one of their faces, as they opened the Valentine’s I had made. I rocked back and forth on my feet and stood with my arms stiffly sloped at my sides, fingers splayed stiff.  I was amped up. (I still do that with my arms and hands, btw. It’s an overwhelmed with happiness sort of expression.)

Classmates shoved the paper bits into brown paper bags, provided by Lebo (I smell buttery-  real butter- popcorn and hot paper when I remember this as earlier that year we were rewarded with a movie, in the chorus/music room, and popcorn served in similar bags), shoved them into their bags, and got ready to head to the buses.  A couple of the girls chatted excitedly, squeaking like rubber sneaker soles on linoleum (or that could have been rubber sneaker soles on linoleum, or both).  I felt a little deflated but then remembered that they would see them at home and it would make them feel happy and cared about, by me, even when they weren’t at school which in 4th grade is a pretty big idea.  Some kids probably had yelly parents who screamed at each other through closed and open doors for hours every night too and maybe they would look at the card I made when they were feeling scared and like adults were giants who could crush them like a bug with a simple misstep, the way I did.  And looking at the card would make them feel not alone.  And that made me happy.

The crowd dwindled to a few kids trying to shove their lunchboxes in their backpacks, without the spatial reasoning to see it wasn’t going to work (and I had been told not to advise my fellow classmates about such things, by more than one of my teachers in the years between kindergarten and Lebo’s classroom.) 

I assumed the cards in my cubby had somehow been sandwiched between the floor of my cubby and my vinyl Annie lunchbox.  I lifted the lunchbox carefully, as pulling it toward me might send the precious bits of paper to the floor and I could see how one might fall from the floor of my cubby, propelled by the movement and friction of my Annie lunchbox, and then spin around on the floor and disappear into that tiniest of gaps between the bottom of the cubby casework and the linoleum floor (a single mm, if that much).

My lunchbox carefully extracted, I looked carefully at the wood floor of my mailbox/cubby. My eyes got very big.  As though opening them as wide as humanly possible would make the Valentine’s that did not exist for me suddenly visible.

The bus ride home was the usual.  Paul called me names and teased me about my body (I was not fat, but I wasn’t a skinny rail of a kid and I had a chubby face and my mom dressed me up for school every day so I was the most obvious target to fit his needs).  Jamie turned around in his seat and stared at Kristie and me, while he mouthed the top edge of the seatback, like he always did and we always hated because sucking on parts of the bus was gross, even without thinking about the germs.

Mom was waiting for me, with Penny, at the bottom of the driveway.  I wished Joan The Bus Driver a Happy Valentine’s Day and carefully stepped off the bus after my mom took the red basket from my hands.

The bus pulled away and I waved until it wound to the left, around the curve that would take it first past the main building of Teatown and then past the driveway heading up to Mrs. Gilbert’s house, The Croft, before turning left and heading back toward the Croton Dam and their bus driver homes as I thought they drove the busses all of the time, not just as a job.  I closed my eyes and clenched my teeth and held my breath thinking about the bridge part of the dam and the metal and knowing about metal and water having rust babies and that left turn at the end that seemed impossible even in my mom’s little VW Dasher Diesel, and always felt like the bus was nearly cantilevered over the too tall steps of the spillway.  But still I waved them on,  every muscle primed and stiff.

I turned to look at my mom and her face fell, then sparked back up as she said, “are your valentines in your rucksack?”

No.

“Did you forget them at school then?”

No.

“Did you not have time to exchange them today?”

No. That wasn’t it.

She was grinding her teeth so hard it felt like coarse sandpaper on my bones.

I simply said, “there weren’t any for me”.

Why was she mad at me? I quickly assumed I was bad or did something wrong to make the other children exclude me from that integral part of the Valentine’s Day experience. I knew it.  I just could not figure out what I had done wrong but she was so furious I knew I had messed up. Maybe I was too happy, to excited.  Maybe I cared about them but… But I had been happy to make them and give them out, before I had any idea how they would respond (though I had assumed they would be happy and comforted by my offerings). So I wanted to be happy again.  When we got to the house and I changed into play clothes, I gave my mom her Valentine.  Her eyes and skin were raw and wet.  I told her I was sorry for not getting any Valentines.  I quietly asked her if we could not tell Daddy because I didn’t want to be the match on the powder keg he always was when he came home.

The thing is, I still relish making gifts and cards and giving them to people, and not always the people who I am close with but I often share these things with people who were just on my mind, or inspired me, or that randomly popped in my head, or as a trading of spirits, in kind, when they have shared a piece of their story with me.

When we were in first grade, Miss Kelly would sent the birthday kid to Mrs. Gillman’s room and the class would decide on a sentence that described the birthday kid and they would all practice their letters nice and neat on the paper with the blue solid and dotted lines and the little picture of a house on each line.  They would each draw a picture of the birthday kid and Miss Kelly would put the pictures and words on red construction paper, and have the pages comb bound by the Main Office ladies into a big book and then give it to the birthday kid.

My book said, “Becky has rosy cheeks. She is very generous.”  I was five.  I still try to keep it as my mantra.  Not the rosy cheeks bit, as that is still effortless as I’m generally a fairly pink being. The generous bit.  I cannot afford to be generous with money or goods at this particular station in my life, but I can be generous of my spirit. I try to do that. I try to take care of everyone and sometimes I will reach out to an old friend or classmate, just to check in on them.  Maybe that seems odd.  I often hesitate because I’m primed for rejection, thanks to starting life as an abandoned newborn.  I know I remember more than most,  but I wonder if even peripherally I held a speck of space somewhere on the undulating folds of Grey matter.
It seems, to me, that most non-autistic people do not have the same peculiar acuity of memory which I am blessed (cursed. Really. Try sleeping when you get stuck in a multi-sensory, real time, unedited, immersive memory of a humdrum day 30 years ago.).  I’m beyond concern that I’m weird. I know I am.  I embrace it now and it took so very long to get here.  I just hope that those old friends and acquaintances don’t see me as anything but as that rosy cheeked, generous kid who just really wants to connect and connect the pieces.  I will admit there is more to my need/desire/curiosoty to reconnect with people from my past, relating to physical trauma, PTSD, and memory loss. To put it simply, I do get a bonus from reconnecting, in that it helps fix some of the busted wires keeping me from accessing memories from a large chunk of my life. So yeah, I’m 41.  I finally am ok with not being totally selfless all of the time.  But I hope people realize that I am still that nerdy little kid with the rosy cheeks and the big heart and if I have some of the frayed and busted wires soldered by reconnecting, then woohoo, but I don’t want anything except maybe some conversation, mutual respect, and to reopen the connections in the universe between us, because while we may seek nothing from others and they may not feel the need for us at a given point in time, life has a way of flying off the road instead of slowing for those scary left turns at the end of road which caps the Croton Dam. And I never got the Valentines.  And it hurt more that my mother was disappointed and angry than it did to not receive those Valentines from my classmates.

So what is the point of this epic traipsing down memory lane?
I wanted to share some of the things I have learned and not just that other kids can be total shits (as can their parents who don’t insist that they bring in a freaking card for every kid because INCLUSION MATTERS, even in this).

Before you can be good with anyone, you have to be good with yourself.

If you have friends, family members, kids, etc… who are single or are not swarmed by friends that does not mean they are miserable.  I remember from my childhood, and I see it now, with my mom and Alex, not realizing how lonely or excluded I really was or that I was basically a social freak compared to my peers until someone felt the need to ask me and make me think about it, or comment.  Engage your friends and family members. Encourage them to talk to you.  Being single (either romantically or platonically) is not a freaking disease that needs to be cured.   My second thought, after my son’s dad asked me to marry him (first thought being an enthusiastic “YES”), was that I might finally pass muster with my parents, one of which seemed fairly convinced I would never find someone to tolerate me even remotely (though she never has seen me, or anyone else, as an individual, we are all just extensions of her and pawns. It happens. No longer bitter as it’s just fact.).  WTF.  Someone loved me(and yes, tolerated me, though as I learned not as much as I thought as he manipulated all of me like so much clay until I was lost and didn’t even know me) to the point of proclaiming they wanted to spend the rest of their life actually with me (and not just vaguely adjacent, emotional neighbors) and my thought after “Yes” was that my parents might finally see me as worthy (I’m adopted. This seems to be a common theme in so many adult adoptees, though of course not all)… WTF!?  So seriously, help your loved ones connect with others but FFS, the emphasis should be on connecting with that loved one not on connecting them with others…Make sure they know they matter, even if they are single for any reason, or if they don’t have many friends.

FFS. Let people mourn. If you lose the love of your life in any way,  shape,  or form you need to mourn,  adapt as best as you can, before you can even breathe without giving it a fair amount of thought.  Let people mourn.  Give them support in tangible ways.  Don’t just say,  “let me know what you need”.  Feed them.  Help with logistics.  Be a shoulder for as long as they need.  There are no standards or time spans or “getting over it”.  Include them. Loss teaches you more than any win.  It changes everything. Be available but realize they have to do the work to learn who they now are.

My son has many moments like my Valentine’s Day experience above, and my mom still needs to ask him if he has any friends and then tell him he just needs one good friend (well, that would me nice, but the kid has a million and one things he will happily talk about so can we not call out his friendship status in the middle of the awkward silence at dinner? That would be a good start)….

I tell him that some of us just take longer to find our tribe, and we don’t make friends easily (we are not horrible, we are autistic. We give off a “we are different” vibe, which is not as easily accepted in the animal kingdom (and oh yeah, middle school?  It’s the freaking jungle but with wifi and chromebooks).  I am still friends with people I have know since I was a toddler, school kid, awkward middle schooler who moved and struggled and wound up in three different schools- a different one each year of the joyous middle school experience… High school, college, adulthood… Our respective tribes should always be about quality, not quantity.

We can hope to find our place, our niche, our tribe, but it only happens organically.  Anything else and we bend into forms unrecognizable, and eventually that is revealed to our partners (of any sort) and everything falls apart.

Be yourself.

Remember that we are all works in progress.

You are not how many friends you have.  You are not your relationship status.

BE YOU. Be you first.

For those reading this who are smug marrieds (Thank you, Bridget Jones and Helen Fielding), for the love of Pete, your loved ones are not a bunch of blistery feet caused by ill fitting shoes.  Stop binding their feet to fit what you feel is best and happy and won’t cause further blistering (which only you can see because you are high on the smug married/smug partnered fumes).
Remember that we cannot see another’s story if we only use our eyes and it takes a lifetime to truly listen to another person’s spirit.  That lifetime is whatever time you are connected in some way.  Our own stories are hard enough to decode, don’t assume anything about another’s ability or will or value. We can’t expect to know our own stories with the depth that there is never enough time for.  We cannot expect to know another person fully, in so much less time, but we can, through sharing distill a hint of a another and that is a rare treasure (and sometimes it’s a hard-won lesson that even a hint of anything can be far too much and too foul a thing to venture any closer).

So, if you are happy just making the damn valentines and handing them out, do it.  Do it year round.  If it makes you feel good. If you think it makes a difference. Do it. Tell people that they matter.

I have been to hell and back so many times that I my next trip is free.  Getting through that, teaching my kid to get through the shitty stuff, is painful (yeah, I know, that which doesn’t kill you, makes you stronger.  Go suck an egg with the platitudes.  I have enough strength. I have been through more than most and survived when nobody would bet on anything but failure or death.).  But the worst, the lowest, the darkest, the most desperate moments are when you wonder if you even exist.  When you wander around between your own two ears and feel a dismal and pathetic kinship with the tree which fell in the forest and you are pretty damn convinced that it made a sound but nobody gave a shit or even knew there were trees in the forest (see what I did there?)…It’s the worst. Someone, anyone, the universe at all giving some sort of sign that you matter, that you are real, even the smallest little millisecond of a twinkle in the world…That is what saves some of us from ourselves.

Last night I realized that my kid might not get a single Valentine from a friend, and then realized that I don’t know if he has anyone, his age, who he would call a friend and would bestow that title upon him, equally.

I didn’t cluck over his shoulder and make him assemble cards for his classmates, because I realize that they don’t do much of that in middle school, especially the boys.

We did buy a bunch of Starbucks gift cards for all of his teachers and aides.  Because it’s important that they know they matter to us.  I made sure that he knows he matters to me (I do that every single day).

And it’s putting our hearts, our souls out there, in those little ways, to say “you matter” to another being (to any other being, in any capacity), is what will save us all.

Happy Valentine’s Day, Friends.

You matter.  You matter to me.

 

xo,

B.

P.S. I did mention mutual respect somewhere in the zillion words I posted…  I am not saying anyone should be in a strictly giver-taker,  fixed relationship with the balance askew in either direction.  I am saying that sometimes I have to do what makes me happy and ignore what others dictate as far as acceptable outcome.  As an autistic being,  I miss social cues and always have,  though I do have a background in communications,  so I understand the cues even though I may be delayed in picking them up or oblivious to them… I just want to be clear that we should be looking inward rather than to others to get a grasp on what we want and what works for us.

 

P. P. S.  You know that not being bitter part I may have mentioned once of twice,  above…  It’s totally natural to be bitter and sarcastic when you are staring down a glass jar of citrus flavored hard candies trying to determine if the giver implied suck as an adjective or a verb.

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“That’s retarded!” or “What a retard!” or “Are you retarded?”

11 Feb

bullied.jpg



This is my son’s worksheet from after an incident at school today. It wasn’t the first incident. Today, though, they surrounded him and joined in and taunted him. It started because one student called him a retard.

This is not ok.

I realize many people still use the “r-word” casually and I realize many people use it and think it is ok if they use it because it was considered acceptable when we were growing up. It is not acceptable now. Please consider what you are saying when you are calling a friend “retarded” or “a retard” or calling their behavior “retarded” as in “that’s so retarded” or “you are such a retard“. You are saying (even if this meaning is unintentional) that people with developmental, cognitive, and physical (people assume far too much about cognition based on just a glance) impairments and disabilities are less than you, are less than “normal”.

Our community has fought, and continues to fight, just to live as others live and to have the same rights as Joe or Jane Average. We all have dealt with adversity, even the youngest in our ranks.

Do not add to the vitriol and mistreatment by using that word.

If you use it now, please stop. If you use it by accident… That happens, but think about the child or adult you are really hurting, and vow to never use that word again (and share this message. Please.). If you hear a child, your child, a nephew, niece, neighbor, etc… use the “r-word“, tell them what I am telling you here. Tell them it hurts. If you are a teacher or school administrator or support staff, please consider spreading awareness that this word is inappropriate and too many students are still aiming it at other children, and not always in a casual way.

Some of those children, being called retards or asked, “are you retarded?” on the playground, in the halls, in the cafeteria are children who have been fighting hard their entire life just to have a seat at the table and in many schools, inclusion means that the table has kids with disabilities.

If you think it’s not a big deal, ask those kids and ask their parents how they feel about it. Ask an adult with disabilities. If you don’t know any you feel comfortable asking then please ask me. It is a big deal.

I was called that dreadful word, as a child with developmental delays, and my son has been called that word daily, at school. My kid isn’t “normal” (which is a word we also don’t use in our home.). He’s better than that. His response to these lunchroom bullies is to explain to them why the r-word is not an acceptable word to use anymore. He is so much better, kinder, smarter than those nasty 8th grade boys. He would never call another child anything other than their first name, because he has been tormented and he knows that teasing and bullying is wrong. He is so much more mature than they are. He can’t fight back the way a developmentally average child would. So he explains. He tries to explain to these bigger kids why they are doing something wrong and mean. Which, of course, makes things worse, and magnifies his differences (which I see as such magnificent strengths) to these bullies. And the taunting increases. Where do you think these kids first heard the r-word? Probably at home, either from a parent or in a movie/on a tv show, and then they spread it around.

WE CAN STOP THIS.

Sticks and stones may break bones, but the reality is that words do so much damage, and until you have been at the receiving end of them, for a lifetime, it can be impossible to fathom the destruction they can cause.

Please share this and share this link: http://r-word.org/r-word-why-pledge.aspx#.Vr0azN-rTdQ

Please take the pledge and spread the message to family, friends, coworkers, classmates and ask them to move the message forward that the “r-word” is not acceptable in 2016.

Thank you.

xo,
Bek

You might be an autism parent if….

6 Aug

You might be an autism parent if...

You put chocolate hazelnut butter in the nutribullet to smooth out some of the natural graininess to make it more palatable for your texture-sensitive kid.

(Note:  this experiment would have worked a bit better with a larger amount of this tasty stuff.  Unfortunately, I didn’t even think of getting him to try it again until I had polished off almost the whole jar. It’s not like I went weeks without that occurring to me.  A jar of Justin’s Chocolate Hazelnut blend only lasts a couple of days, at most, around here. It’s irresistible. Really. Our supermarket and Target both carry it, and the Maple Almond (so good on cinnamon toasts). You can also find it on Amazon: Justin’s)

He did ok with the Chocolate-Hazelnut, on warm toasted baguette, but not that enthusiastic.  He did eat three pieces of toast (small pieces) slathered with it, though, and that’s freaking amazing.   I also got him to eat three (individual raviolis) Amy’s frozen Ravioli even though they clearly had some degree of tomato sauce on them (I scraped off as much as I could. How am I the only person in our family who has zero Italian roots and I’m the only one who will touch a tomato, or sauce?!).  YES!

I’m still finding protein and fresh veggies to be a challenge for him, as he won’t eat nuts (Barney Butter thankfully is smooth enough, and available at Publix and Target(woohoo!) that he accepts it as a peanut butter substitute, as PB is off our menu due to G6PD Deficiency), can’t eat legumes (again, G6PD Deficiency is a factor) and he is mostly vegetarian (we are not, but he just can’t deal with the tearing and chewing of ANY meats), so he consumes quite a bit of milk and I make him a super-smoothie every couple of days with bananas, berries, hemp seed, almond butter, chia seed, yogurt, etc..to try to get at least some variety, as far as nutrients go, into him. He also really likes Life cereal and Cheerios, so at least those are fortified. He is growing and healthy, and the kid has a brain on him, so this seems to be working. Of course, I’ll never stop introducing new foods to him and now that he is older, he doesn’t protest but instead tries everything (serious progress!), so it is easier.

You can share your “You might be an autism parent if…” moments on two fantastic facebook pages:  You might be an autism parent if. and one of my favorite special needs parenting resources/communities:  Shut Up About Your Perfect Kid (seriously, if you don’t have the book, you NEED their book AND their Facebook community/page.  This was the first thing I read when I realized that this journey was veering way off path (and at the time, through what looked like an impassable thicket, plenty of prickers, nests of dangerous beasties, etc)…  Here’s a link to the book on Amazon: Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children.

I also got him to eat fresh cherries (not fresh picked, fresh from the supermarket… we have been mostly housebound this summer… long story for another time) WITH the stem and stone intact!  So I’m not rocking the Lady Macbeth manicure from pitting the damn cherries this go around.  Here he is, after I carefully demonstrated and gave him instructions on how not to break his teeth but still enjoy a good, sweet, juicy cherry.

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A frozen cherry did not fare as well:

Found it.

Peace,

Bek

Surfers For Autism

4 Nov

We had the best day ever on Saturday.  Seriously.  EVER.

Biggest thanks ever to Surfers for Autism, the surfers, the founders, the volunteers, Fort Myers Beach, and FMB PD & FD.

I’ll be updating this post as I sift through the 789 images I took on Saturday when we were guest of Surfers for Autism.

They say that we (people with autism) are “Rock Stars”  so if we are, then I’d have to say that knowing them and being there with them on a gorgeous Saturday on Florida’s SW Gulf Coast was like the worlds most epic fantasy jam session ever, because we think they are worthy of the title as well.  Seriously.  If you had three wishes and could wish for anyone to play together, for you… That’s the fantastic and awesome I am trying to express here.

Where to begin…

We rarely go to the beach as days off and not-too-sick days rarely line up.  Also, the beach is sensory overload wearing a disguise that suggests that she (the beach) is a serene environment, but for us it can be overload starting at the application of sunscreen and escalating from there.

We did it though.  We went on Saturday.  I have proof!

Before the first run of the day:

Fort Myers Beach FD brought over a truck and handed out paint! Everyone painted and tagged! It was great fun and quite a masterpiece!

Alex painted these words on the wheel well trim: fire, 911, emergency, truck… I found a blank spot and painted his name, some hearts, and an orange penguin.

Alex didn’t know where to start so I told him, “just find a space that doesn’t have any paint and start painting!” So he painted words (you can see 911 in this image) and then he proceeded to paint all of those little rubber feely-bobber hairs on the tire orange. Nobody else had thought of that! (by the way, those feely bobber hair things are left over from the injection molding/tire making process. The NASCAR peeps have to cut them off their tires! Ahhh Viva La Google!)

Alex’s first surfers/guides/volunteers. The dads on the short kept commenting, “Oh that kid has it rough! Three total babes in bikinis!” It was pretty funny. They weren’t just gorgeous, they were incredibly patient and kind and warm and really made Alex feel so secure in that new and alien environment. I’m very thankful (for his surf goddesses! :-) When he came back to shore he had two more with him! One of the dads said to me, “That kids got talent!”.

For his 2nd run, he had another two fantastic guides. Corey and Marlene Lilly. Corey looks uncannily like Russell Brand and I was surprised when he spoke and his accent wasn’t British. He’s a really kind and mellow guy. He finds and picks up sand dollars with his feet. He brought one over to show us. I’ve never seen a live one… Corey also stopped by Alex’s sand digging extravaganza and talked to him and his dad.  And remembered his name.  These surfers, these volunteers, are brilliant at making each person feel wonderful about the experience.  Alex had a good second outing with Corey and Marlene and he was definitely more relaxed and chomping at the bit to get back in the water! After this we had lunch. Alex’s Oma (my mom) showed up just before he went for his 2nd paddle. We were so excited that she came by to see him surf!

That is my kid STANDING UP and SURFING and nobody is holding onto him! He stood up from his paddling/kneeling position, unaided, with the board gliding toward shore! I know! I was doing fine most of the day but that was it. I let my camera drop around my neck, started flapping my hands and started to cry some very happy tears and cheering loudly. His guides from the 3rd outing are not seen here but they were two guys named Jeff and Jim (or Bill. Spoken language keeps getting more challenging for me over time. It sucks, but it’s also a positive because it makes me more sensitive and aware when delivering any information to Alex who has a similar challenge).

I made this for him today:

Yeah.  I’m still getting goosebumps when I think about him surfing into the shore, with his hands out.  He amazed me.  He amazes me each and every day and has since he was born.  It’s not that I think he can’t do something, because he can do nearly anything he puts his mind to.  That being said, he can’t be neurotypical and neither can I.  We can put on an act that works in some situations, but that’s not us.  Surfers For Autism  has an incredible calm to it, that I rarely feel when with anyone other than my kid or by myself.   The reason for the calm, in a very large group of autistic people and their families, is that everyone there can just be themselves.  We pulled up to the lot next to Crescent Beach Park and I saw 5 kids in maybe 15 feet of sidewalk flapping and walking tiptoed.  I said, “It’s going to be a good day”.

And it was a good day.  It was the best day we’ve had in a very long time.  We deserved that and I will treasure that feeling probably forever, though we will have days to match once the 2013 Surfers For Autism season kicks off.

xo

B

For Friends/Family of Special Needs Parents:

16 Mar

I think this applies pretty well to other special needs and not just autism.

In my virtual travels, I have noticed a major theme and source of extra stress for parents of kids with special/different needs and that is that family and friends that were a part of their life before the special needs came into play (before the child/children were born, before the parents became concerned and started seeking answers…  Anytime, really…) are either no longer present or seemingly unwilling (or actually unwilling) to accept their friend’s often complex responsibilities and family challenges and maybe their friend’s increased need for someone to listen, a friend who won’t judge them, just kindness … A FRIEND.  They could really use a friend. If you still want to be a friend (and this goes for family- immediate and extended pretty equally) but just don’t know what to do, here’s a great place to start:

(I do have other links like this…I’ll update and post them when I can…)

Your Child Has Autism, and I Don’t Know What to Say: Seven Ways to Go the Extra Mile to Keep Your Friendship Thriving

via Your Child Has Autism, and I Don’t Know What to Say: Seven Ways to Go the Extra Mile to Keep Your Friendship Thriving | Delightfully Different Life.

 

Please share this resource!  Us exhausted parents of special needs kids thank you!

xo

B

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