Posts Tagged ‘child’

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Keeping kids on The Safe Side

October 23, 2009

The Safe Side

Seven year old Somer Thompson was abducted, murdered, and thrown away with the trash this week.

There seems to be an endless barrage of tragic news about abducted and abused children. I don’t know if it is happening more frequently, multiple media saturation, or if now that I’m a parent my ears are tuned more toward news relating to kids. We try to regularly review our “stranger safety” plan and emergency plans with our kid, but the necessity of increasing the frequency and intensity of reviewing these plans and practicing our emergency plans is highlighted this week.

Somer’s mom told NBC’s The Today Show :

“It takes just a couple seconds to tell them you love them,” Thompson said. “Tell them you love them because you don’t know what’s going to happen. And just make them aware of stranger danger. I tried with Somer. I feel like I failed — obviously.”

Our little guy tends to be pretty black and white, so when we first discussed the concept of strangers, we found that people like his grandma’s friendly neighbors fell into that gray area and he would just totally freeze up and then freak out- not knowing how to handle the gray area. Because of our extra challenges in teaching our kid so he can actually use the information, I looked long and hard at what was on the market (and online) that could help us explain “stranger danger” to him effectively.

After a little research I found “The Safe Side” a program by John Walsh and Julie Clark (you know- the Baby Einstein lady). They do have a website, but the DVD really helps get the point across in a fun and friendly way, that even my kiddo could understand. It teaches what to do in certain situations and most importantly uses a simple “traffic light” system to help kids remember the rules.

We enjoyed the DVD and I highly recommend it to any parent (kids 9+ might find it cheesy or goofy, but it still brings the message home).
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Remember, try as we might, we can’t be everywhere all the time. Teaching kids safety doesn’t lock them up in an isolated tower, but rather opens up the world to them by giving them the tools to navigate it safely. I remember a time when kids roamed the neighborhood free and only showed up at dinnertime. We do not live in that world anymore and we, as parents, need to educate our kids in different and more intensive and extensive ways than our parents educated us.

Amazon carries the DVD for under $10 (Amazon purchases through this link send a tiny percentage back to us. Woohoo! Thanks in advance!).

TheSafeSide.com’s website also has downloads and printables for parents and kids.

The whole safety thing reminds me of the parable about teaching a man to fish and feeding him for a lifetime. You can isolate your kid and keep them safe (and miserable) by exclusion, or you can teach your child to be safe and you will help keep them safe for a lifetime. The murder of that innocent little girl and the interviews with her mom in the media underscore the importance of frequently reviewing safety information and making sure it is information that our kids can actively use. I am also reminded of all of the “don’t touch, tell an adult” rhetoric given to kids about firearms and matches and lighters and the hidden camera news reports showing the kids doing the opposite of what their parents told them. We need to make sure our kids understand and can actively use and recall safety tactics.

There is nothing neurotic about quizzing your kid before a family outing, visit at a friend’s house, or even using action figures to play out scenarios (we use Playmobil figures as they are pretty generic and equally sized- underscoring the concept that you don’t know who is good or bad or dangerous by appearance alone).

We don’t want to scare our kids, but we owe them, and ourselves, their safety. My son knows about Somer. Her mama sang, with others at a candlelight vigil, “You Are My Sunshine”. I cannot imagine what Somer went through, I cannot imagine what her mama is feeling. I cannot imagine a world without my sunshine.

A little girl named Somer died this week, at the hands of a bad/evil person. Her mother wanted people to know how beautiful and sweet she was and how she wanted to be friends with everyone. (from the NBC Today Show interview)

Let’s do whatever we can to keep kids from being a statistic and another tragic story on the evening news.

Hugs all around.
xo
Bek

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I think he likes me!

August 22, 2009

He thinks…

Originally uploaded by CleverIndie

I think I need to make a little shrine-like thing of all the amazing things Alex makes for me.

This will be in a frame, next to my “1000 sails” card, the pop-up book, and in front of them will be the “mama rocks“…. This one is extra special because he wrote it without any prompting or suggestions or help from anyone. This was totally under his own steam, from his heart (and from his trains!)

We gave him his zuchertute/schuletute on Thursday- his last day of Pre-Kindergarten. We didn’t want him to be distracted by the treats on his first day of actual Kindergarten. (I’ll post pictures of the cone/tute soon! Promise!)….

He wrote this note on his personalized notepad from ThisIsIt.Etsy.com with his new fountain pen (I realize he is not even 6, but I have always found fountain pens to be easier to write with and he has been fascinated with mine, and it requires a little more responsibility than traditional disposable pens but I thought he was ready) and mechanical pencil….

How cool is this?

I’m thinking of heading to Cafe Press to have them put it on a Sigg water bottle so I can be inspired and feel loved and healthier all day long.

I have a serious case of the warm fuzzies. Going to hug my boy again.

xo

Bek

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Islands in the stream….

May 18, 2009

Islands in the stream….

Originally uploaded by CleverIndie

That is what we are…

Anyway… Where was I…

Kiddo is a picky eater- he’ll try most anything, but he’s a creature of habit and has sensory issues- so he’s very specific about what he likes and what he loathes…. (and if he changes his mind he will admit nothing!)…

So, he likes everything bagels, corn, and cheese….

So I popped the bagel (with some shredded cheese) in the Rocket Grill and it squished the daylights out of it! So I put it on a plate, put two little morsels of grilled (rocket grilled, baby!) chicken “sunning” on the Isle of Bagel…Of course, the sun is powerful (sun=corn in nifty little pinch bowls…pinch bowls are a lifesaver when you have a kid who cannot handle different foods even seeing each other, never mind *gasp* touching…)

The broccoli is a unique specimen of palm, found only on the Isle of Bagel. By the way, the stars in the blue sea are starfish, and that orange slice toward the back is the mainland (ok, ok, it’s one of those make-a-plate things and it’s an orange moon and a starry night sky)…

So, why does food need this backstory?

Because my kiddo is *that* detailed. He is also very rules based, so artistic presentations of food challenges his deeply ingrained meal & food rules in a fun and somewhat novel way. It’s fun, he’ll argue with me that the palm tree is really broccoli, if he’s tired I know better than to present anything with even .05% whimsy or all hell will break loose. We are working hard to soften some of his rules and his rigidity as living in the world with other people often requires compromise and a little grace and we are getting there, albeit very slowly. How slowly? He’s rules based, he has no gray area, he can’t generalize, so if a scenario is not repeated exactly (ie temperature, light, people present, etc…) he can’t apply the new rule or the exception to the rule, or even withdraw a generalization from his brain/bank to really understand or function reliably.

If you don’t know any kids who are this rigid- imagine potty training a child at home and then take them to grandma’s- most kids can apply their at home potty training to other locations (sometimes with a little urging or reminder and a little modification on everyone’s part)- they can ignore the variables-to a point- and find the constants (the potty, having to pee, etc).  Alex can’t ignore the variables so he can see the constants clearly.  In the potty training scenario, if you switch up the variables from his home/training base, it’s like he has never seen a toilet in his life and you have to start from square one.  (and this isn’t a far off analogy- I was on the verge of making a public restroom scrapbook for him so we could study up before leaving the house- and so we could focus on the visual similarities in the comfort of our home).  Is everything this intricate and challenging?  Yes. It isn’t getting easier as time goes on, but it is changing, so there is no such thing as boredom.  And in all this I can’t stop marveling at the details he notices- it’s like wearing reading glasses- he can see the words clearly but all else disappears…It’s like he can read the words and get sucked into the story but if you ask him about the physical book he has no idea what you are talking about… Raising Alex has made us appreciate the intricacies of thought and reasoning and creativity.  Ok, now where was I?  :-)

Last night he was in a good mood. He let me explain the food to him. He announced “I like my food plain” and I countered with “it is very plain, I just put it on your plate a little differently”. He hesitated and quickly gobbled up the sun/corn…

I showed him how he can pull a little bit off of the chicken to just taste it (chewing meat type stuff makes him gag or hurl- depending on how far he is into the meal)… And he tasted it and then even ate another little piece without our urging.

Unfortunately, the rocket grill turned the cheese bagel into a crispy, tasty grilled panini sort of a thing, and it was too dense for him to chew (without again gagging…)…

But I feel triumphant… The chicken was no longer stranded as it swam into his mouth and down to his tummy…

Alex declared that it was turning to night as he gobbled up the corn (thereby making the “sun” go down)…

He wouldn’t try the broccoli until I remembered the key to a 5 year old boy’s laughter. He wouldn’t buy the tree devouring giant scenario and then I remembered…

I whispered to him that broccoli magically transforms into horrific, near deadly, rank gas when you eat it.

He giggled and took a bite…

Victory is mine.

By the way, I just received a copy of the Sneaky Chef cookbook in the mail… I’ll comb through it with an eye toward sensory defensiveness (particularly my kiddo’s, but there seem to be a few people cooking for kids like Alex and more typically developing kids seem to have many of the same food quirks) and let you know if it’s worth the purchase…  I think kids can learn the joy of healthy foods without hiding them, but when dealing with sensory issues sometimes you have to go behind the scenes, hide the good stuff, and reveal it slowly… And sometimes you have to play with the food.

xo
Bek

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Old pictures and updates…

March 10, 2009

Found this today.. This is Alex and me. Just before his 1st birthday, he was admitted to Children’s Hospital in Boston for every neurological test except the one the doctor wanted him admitted for (an MRI).  The cribs are solid steel and built like tanks. The nurse told me I could climb in if I wanted to…So I did.

Bek & Lexo the Great (2004)

Bek & Lexo the Great (2004) *click for all blog entries about Alex...*

Anyway, I love this picture and so does Alex and I just felt like sharing on this sleepy Tuesday night. (Can you believe how big he has gotten? Can you believe that his head is now only a couple of centimeters smaller than mine? And mine is in the >98% to begin with!)

For those of you that are curious, we still don’t have results on my MRI from last Monday (yes, it has been almost 9 days. We were supposed to have the report within 24-48 hours.  The neurologist’s office finds this odd as well but hopefully the radiology peeps are just reading and rereading it and writing a thorough report).  I am still having the jello legs/weakness thing and the arm thing. I’ll post when we have more info.  Needless to say I am steering clear of power tools for the time being, but never fear! I have quite a few pieces in my arsenal that you have not seen yet! So I will be posting those and also planning for a “Move us the heck out of Florida to anywhere with an increased likelihood of Jeff finding a job and more options to help Alex rock even more Fund” grab-bag/mystery sachet/container o’surprises thingeroo fundraiser in the near future… So keep those eyeballs on this space and keep your fingers crossed that we get some sort of an answer soon so we can get back to whatever it is we do here.

To make it easier to stay abreast of Be Clever/CleverIndie.com news you can subscribe via email!  Click me!

Hugs all around,

xo

Bek

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Now I Lay Me Down To Sleep…

March 6, 2009
3 days old, first time I was allowed to hold him....

3 days old, first time I was allowed to hold him....

(I chose these image from the NICU… They don’t quite feel like a fit for the post but they kept hollering at me..)

I can only imagine how it feels to lose a baby.  Even during our ten days in the NICU, the deaths of the tiny patients were not spoken of, for us outside that baby’s family, it was marked by the absense of an isolet or incubator that was crowded with doctors and loved ones only hours before.  We knew, all the parents knew, that we were fortunate as it wasn’t our baby. But it could be. In the NICU the emotional stew that you live in is a lifetime of emotion and stress in a matter of weeks or months…It’s a lifetime compacted into a tiny room and a tiny plastic box with portholes, wires, tubes, and distressing alarms.

A little over 24 hours old...Finally got to see his face in person (the nurses gave me a polariod to have in my room a few floors away while I got the rest of my IVs)

A little over 24 hours old...Finally got to see his face in person (the nurses gave me a polariod to have in my room a few floors away while I got the rest of my IVs)

But we were lucky.  I don’t think I will ever forget how lucky we were that Alex was ok. My mother was annoyed when I mentioned other babies in the NICU, who were there before Alex and stayed long after he came home, or who “disappeared” overnight-focus on happiness, she would tell me.  I truly believe that the stark contrast of what we had, and what could have been- what was a reality for many people, makes me appreciate Alex’s survival much more.

Since Alex’s birth and many changes in the life of our family, I have, in my journey, seen friends and family lose children at all stages of development, at all ages.

I can only imagine the loss of a child. I am grateful that I can only imagine it.  Perhaps I am not imagining it accurately, but I know my love for my son, and how the possibility of losing him has felt, and the helpless, drowning sensation that his distress, prematurity,and neuro issues, and the two miscarriages before my pregnancy with him, have impacted me on so many levels…  I can only extrapolate and the place where I wind up is stifling, hot and humid, very dimly lit…I imagine it to be like a vat of a viscous substance- like molasses- drowning, muscles aching as they try to move, there are no words, but by some cruelty you can still breathe, even if it’s hard and physically hurts….I can only imagine that the reality is much more terrible that what I can imagine. My heart goes out to anyone who has experienced the loss of a child, their baby, at any age or stage.

My cousins Aimee and Julie, just introduced me to an amazing organization that helps parents who are facing the death of their baby remember their child.  The site for Now I Lay Me Down To Sleep has much more detail about the program.  Here’s a paste from their about me:

“This is the place where the Now I Lay Me Down to Sleep Foundation gently provides a helping hand and a healing heart. For families overcome by grief and pain, the idea of photographing their baby may not immediately occur to them. Offering gentle and beautiful photography services in a compassionate and sensitive manner is the heart of this organization. The soft, gentle heirloom photographs of these beautiful babies are an important part of the healing process. They allow families to honor and cherish their babies, and share the spirits of their lives.”

I checked out the site and I really wanted to help, to honor the families that I know that have lost a baby, which is why I’m trying to help spread the word…

They are currently running a fundraiser to support the NILMDTS mission. Our cousin Jaime  is participating in a national model competition that benefits NILMDTS.   Please consider visiting the image gallery and voting for our lovely Miss Jaime while supporting a wonderful cause.

You can see Jaime’s picture and vote for her by visiting:

National Charity Model Search benefitting NILMDTS

Every vote cost $1.00 and every dollar goes to a charity group close to our hearts, Now I Lay Me Down to Sleep (www.nilmdts.org). Jaime also has the opportunity to have a photo shoot with a renowned photographer if she is in the top vote count by March 15th, 2009. Please be generous and vote by then if you can! You can continue to vote until April 2nd, 2009 to give Jaime the chance to be the National winner!!
Thanks a bunch….

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I can hear the ocean!

March 1, 2009



I can hear the ocean!

Originally uploaded by CleverIndie

Kiddo and I were looking through my vast digital photo library last night and found this gem…. (note: I don’t know who the owner of the rear end is…this was at the water feature at the wonderful Lakes Regional Park in Fort Myers)

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Pop-up Love!

February 18, 2009

Valentine’s gift

Originally uploaded by CleverIndie

Alex and Jeff made me a pop-up book for Valentine’s Day!

I can only imagine the amount of effort both of them had to conjure up to complete this treasure…. They both worked so hard…

Mama & Me

This is Mama & Me. We do fun stuff together. (the pulltab makes us stir the pot on the stove together)....

My Mama is brave.

My Mama is brave.

My Mama is smart. (pulltab makes a lightbulb appear over my head)

My Mama is smart. (pulltab makes a lightbulb appear over my head)

She gives hugs and kisses.

She gives hugs and kisses.

Mama is the best mama in the world!

Mama is the best mama in the world!

copyright Alex 2009

copyright Alex 2009

Am I the luckiest mama in the world? I think I must be!

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Screw survival of the fittest.

January 27, 2009

Alex came home today, his face streaked with dirt, even his eyelashes and eyelids had streaks of black dust from the rubber playground mulch.

The kids in his class, most of them younger than Alex, gathered around and told my husband what happened, when he came to pick kiddo up from school.

The teacher didn’t say anything, so my husband asked and was told by the teacher and the principal that the kids were playing rough today and incident reports were written up.

The little kids weren’t so gentle in their telling of the happenings on the tiny, fenced playground, today.

The group of kids that were playing rough apparently shouted “Pot!” at Alex.  He often mishears things, so we don’t know if they were actually calling him “Pot!” but he is upset about it.  So he yelled back “Meatball” which he thought was a terrible thing to call someone, and appropriate if someone called a person a pot.

“GET HIM!” one child shouted, and ran after Alex.  They tackled him and pushed him to the ground and started kicking him. When he tried to get up they pushed him down again, and kicked him some more.

He came home and they told me this. Alex was very matter-of-fact but he was also quick to change the subject, which is what he does when he is in more of a typical, traditional, stereotypical state of his autism.  When things are new or different or he is nervous he lectures, factual and emotionless. Our little professor.  So he went right into his dissertation and I tried to ease him back into the more interactive kid we have started seeing more frequently at home, when it is just the three of us and everything is calm.

“He’s not ok”, I said to hubby.

I asked Alex if he would like to take a bath to get all of the dirt off as he is not a kid who handles dirt well and it’s only recently that we can get him to not compulsively wash his hands between strokes on the paper with fingerpaints.

He said yes, and I got a washcloth to try to get some of the black dirt off his face, and we talked.

I asked where they kicked him, when they kicked him when he was on the ground, and he pointed at his chest and turned around gesturing at his back.  He said “my spine” and “my back hurts”

I helped him take off his school shirt and there were black dirt foot prints that had sifted through his shirt, stamped onto his skin.  Between his shoulderblades, on his lower back, on his chest.

He’s in the tub now, having a bubblebath.

I’m shaking. My heart hurts.

Tomorrow we have an appointment with his headmistress, we made the appointment awhile ago, but now it is more urgent and important than ever.

Something has to change. This could happen anywhere, but we would have more options up north. Here we are all stuck, and we are all feeling a bit downtrodden and frustrated and overwhelmed.

One of the number one issues we have these days, is that Alex cannot reliably pass information to us, at least not in a timely fashion.   A year from now, he will mention today. Ten years from now he will mention today, and the playground, as though it just happened.  I am grateful that the other kids in his class look out for him, they know he’s different but they don’t see that as a bad thing most of the time.  He always forgets to grab his lunchbag from his seat when we pick him up, so another kid will bring it to me (or hubby) as soon as one of them spots us at the door.  Then all of them say “Alex, your mama is here” to him, gently coaxing him to look up and focus and see us and his face lights up.

I don’t know what happened on the playground today.

I know we will never know what happened on the playground today.  I know that school won’t let us see the tape.   I do know it was more than playing rough.  Alex said the kids were bigger than he is.  I have a feeling the set up for today’s incident was thoughtlessness and carelessness.  It’s a small playground, the classrooms are mixed ages, but blending those mixed ages with the next age group up, on the playground, with non-too-diligent observation by staff, is not wise, even from a layperson’s perspective.   I realize that Alex isn’t necessarily a complete innocent and I know we will be working intensively with him on this stuff throughout his life, but I also know that nothing should ever get this out of hand, in a 500 square foot playground, with supposed supervision.  Kids fight, I know.  But a bunch of kids chasing another child (who is 5 and small for his age and different from them…which may be why they were targeting him to begin with…) is unacceptable.

Screw survival of the fittest, this is my kid.

But I feel like this horrible thing reinforces the care and support he needs and that we need, and will hopefully open a discussion that will help all of the children in the school.

We were going into our meeting to see how all of us could work together for Alex’s benefit.  Now I feel we have to fight for a basic need of all of the children, so they can learn in safety and in peace.

I need to calm myself, meditate, write down our game plan for talking to the principal tomorrow.

Perhaps we will have a more focused path after the discussion tomorrow.

I can hope though,  that’s all I’ve got right now. Hope and Alex.

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Inspiration is everywhere

January 17, 2009

Even in the joy of a new style of underpants…. This is boy’s response to boxer shorts (he was previously a boxer-briefs, underoos sort of a guy before this)….

Enjoy!
xo
Bek

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Vacation to Normal…

October 21, 2008

Alex in his hat….

Originally uploaded by CleverGirlBek

Our child and our life together as a family are not normal, average, or regular. It’s freaking hard people. I don’t want to hear about the sunny side. I don’t want to hear about how so and so’s kid was cured or how my kid looks normal or seems normal to you. I don’t want to hear how normal is boring. I crave boring. I love my child. But a day of boring. A day of regular. A day of normal, with Alex present and active, would be the most extravagant outrageous vacation we could ever imagine. Sure, we’d get to the end of the vacation and we’d probably say we were glad to be heading home, but we would have had fun in normal, regular, boring while we were there. We had a day of relative “normal” on Sunday…But it was a brief snapshot… I hope to see it again and more frequently, but of course it is the day to day that is important right now. I wouldn’t say it was totally normal, but we could see the progress over the past year. My son is 5. He went on his first motorized amusement ride on Sunday. He didn’t lose his shit or scream or yell or stand up or climb out while it was in motion. He didn’t even seem to notice it was moving and tilting. They had a bubble machine in the middle and he just stared at the bubbles and tried to catch them from his seat. Those bubbles weren’t there for the other kids who like the round and round and the wind and the tilt, they were there for my kid so he could handle the round and round and continue having a great day. I almost hugged the ride operator. But I would have had to explain…And I didn’t want to bring on the tears or they would have never stopped because I am just overwhelmed and tired…

This is a picture of him in his oktoberfest hat…We get him a new pin every year… The backpack has his weighted vest in it..He is sensitive about it lately- we are rapidly speeding past the age where special was good and it was ok, to him, to be different…He notices the differences now, and he isn’t happy about them…So the vest goes in the backpack where Alex thinks it’s ready if he needs it, meanwhile it helps him as the weight is still being applied… (it’s light, only around 2lbs)

After five years of being told or at least hinted to that we look too deep, overanalyze, and/or are paranoid people, it is nice to have the validation given by the objective test results. There is something going on. It’s not our fault, but it does not exist independent of us and it’s up to us to make a difference. Any difference.
A very dear friend once described life after a tragedy as “the new normal”….
I would love to apply that here but the reality is that the majority of this has been normal for so long that it can no longer be described as new. There are new parts. But this stuff isn’t a shock, it’s a relief in some ways, a jumping off point… It’s not like he was diagnosed with something like a tumor that we didn’t know was there but it has been hurting him…This wasn’t something that happened overnight…

I do wish that people (professionals and non-professionals) had not spat our observations out the way that they did. Even one person we trusted saying “if you are worried, here’s here you need to look” or “you know your child best” could have gotten Alex help much sooner. We have been reassured since his birth that “this is how kids act” or told we were paranoid. This has never served us well. This is our first time around. I feel like a jerk for trusting and confiding in professionals and non-professionals rather than just going with my gut. But going with my gut led me to those professionals (general pediatrician, etc) and they shot everything down with a “he looks fine to me”…. Not that his test results are black and white- oh no, not my kid…That would be too easy… But our concerns were valid, and they were signals, red flags, and they were largely ignored and belittled. This is the anger part for me. The last time I was in his peds office when he had a fever and was acting strange I explained to the ped who was handling urgent care for the office that Alex doesn’t climb things and he is ground bound and doesn’t even like climbing up on his bed, but other than the low grade fever the only other symptom he had was that he was climbing things- barstools, counters, bookshelves. She looked at me like my face had suddenly morphed into a pile of turds and said “You do know he is a 5 year old boy and that’s what 5 year old boys do.”

But not my 5 year old boy. It was odd behavior for my child.

I have had it up to my eyeballs with doctors seeing all children as the same and fearing helping a child. I also think if 5% of a parent’s intuition or concerns were actually heard and processed and considered, so many kids could be helped.

For now there is enough clarity to spin new threads of inquiry, of questioning.
There is not enough to thoroughly research but there is enough to investigate therapies for associated issues, general issues, so that we can begin helping our son in a more focused manner.
But there is not enough to buy a pile of books with specific names, but we can take them out at the library but I still feel like we are hiding, like without a definite diagnosis (and I understand there are benefits to not having a diagnosis, but those are starting to really dim for me these days) we can’t officially belong.
On the other hand, some very wise and generous women with kids who are, in many ways, like my own child, have welcomed me with grace and understanding and because they have been where I am today the conversations and emotion come like a tsunami. Our situation is unique, and in the grand scheme of things and just statistically in the world population, our experience is so very unique to the point of isolation. But with the kindness and openness of these warrior mamas, I finally feel like we are less of a freakshow and for the first time it feels like I might be able to talk to someone without being told what I am doing wrong or that I have to be strong and not cry. The details and diagnoses are very specific; the stories are universal. I used to cry after hearing or reading a show or article about a parent and their child, and that child’s challenges. I now cry out of relief because I know we are not alone.
I am finally finding the strength to speak up for my child. The anger and frustration of those who judge, both strangers and family, infuriates me. Part of me longs to educate, as I have had to do many times on my behalf.
But I’m exhausted. When I am in public or broken down enough that I collapse on the shoulder of my most critical family member, knowing that I will be criticized, that I need a formula to choose my words wisely but with strength. It is difficult with a screaming child, to explain to the stranger, that a spanking or a “good whooping” will not do a thing because this is a neurological issue. It’s not a bad thing, it’s not a good thing. Whatever this thing is it is a fact. I long for that fact.
I have decided that once we have a single word to describe the why that I will have to screenprint some cards with more information. The old man at the store who tells me his sons would have never gotten away with this sort of behavior will get a card. My mother, who when we first mentioned that Alex had a visit with a new neurologist, will get one when she responds that she notices a certain abnormal behavior but only in response to me and that if Alex spent an hour with her every week (instead of the professionals who help him) that he would be normal and cured. I wish I could slap them across the face. I know that wouldn’t solve anything. I know that would most definitely not be a positive example for Alex. But I want that ice water over the head, that smack across the face, that maybe they will learn to shut their mouths when they just don’t know. If that old man (for example…could be anyone, but the 70+ male crown tends to be the most blunt and rude) realized that there are unseen things in the world and they shouldn’t judge (although the thing about old dogs and new tricks comes to mind, I have been proven wrong once or twice), then maybe the next mama struggling at the store with her kid and his raw nerves and communication issues would not have to get all of the tears out in the car so her eyes won’t be blurry on the drive home. So maybe that mama could venture out for more than just milk and toilet paper without being judged and maybe solutions could be found in those outing than are not as visible in a controlled, home environment.
My parents constantly tell me that I am too sensitive. At the end of a long day, with many struggles, where not one simple activity is accomplished with ease, I don’t think anyone who cries because someone judges them in a most disrespectful and ignorant manner, is sensitive. I think they are human. For me it’s that reiteration that we don’t fit in. Now we are finding that we do fit in, just not in any actual, physical place with any consistency. But we now have the connection to others with similar quirks and traits and disorders, who even though they may be on different continents or thousands of miles away, help us feel accepted….
It also floors me that we are spending so much time one social skills and social stories, yet on some days I feel like Alex has more of a grasp on it then the “well meaning” adults we encounter.
So please, if you read this far, please give people the benefit of the doubt. There are many things which are unseen and many of us who have mountains of challenges, with more challenges piled on top of the first mountain’s worth. Instead of assuming you have the cure, the answer, or the key to our salvation please take a breath and ask if you were having trouble walking with a cane and balancing the milk and bread in the other arm- what would be helpful to you? A comment about how you walk too slow? No. Ask if you can help carry something for us. If you don’t want to help. Kindly zip it. If you see an exhausted mom with a screaming kid (who isn’t screaming “help” or “this is not my mom” but generally yelling and screaming and crying, please wave and say hello. His name is Alex and I am Bek. It’s nice to meet you.

(I swear I will go back to my regular blog entries soon…We are in the immersion phase of planning and implementing… I get ½ an hour in the afternoon when I just finally start to crack but I am still somewhat coherent… Hugs all around…)