Tag Archives: disability

Old pictures and updates…

10 Mar

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.

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Hugs all around,

xo

Bek

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Checking reflexes…

22 Feb

Today I was talking to Jeff about some spine info I found on the internet.  I haven’t been googling about my shoulder, and my arm being numb and shaky. I was going to do that after the MRI and it has gotten somewhat intermittant rather than constant and constantly worsening… But it’s still there…

And my legs are weak.

So I know something is going on.  So I googled.  I read aloud to Jeff.

And Alex heard me.

He comes in to the bedroom, smiles and me and

“BAM!”

Slams my left knee cap with his solid hardwood toy tool bench hammer.

Shocked the daylights out of me.

He told me “like at the doctors”

I replied “they use a rubber hammer!”

Jeff came to see what the fuss was about and I lost it.  I just cried and cried and cried, while I really wanted to laugh but the tears just kept coming.  It was funny, by itself it’s funny…..But my body does not agree…  My back hurts, it feels like a stack of cement blocks grinding against each other, whittling themselves down to nothing.  It’s not just pain, it’s that nails on chalkboard, things not moving right feeling that won’t quit.  My right arm isn’t working right, it’s numb or all pins and needles and the intention tremor is worse. And now my legs feel like I just ran a marathon and went on a bar crawl- sore and rubbery, wobbly.

Blech.

Kiddo feels so bad about the hammer thing.  He was trying to help. He is always trying to help me feel better.  And that makes me feel so terrible.  I want him to focus on being a kid, I want to be able to enjoy his childhood and his life and I really want to participate.

I hope this is just some temporary swelling thing and nothing that requires anything else to drag the last of my energy and my strength away from me.

Will update soon…

xo

b

Two Tip Tuesday!

3 Feb

There’s no wrong way

Originally uploaded by CleverIndie

I’m going to start collecting tips and sharing them…Two on Tuesday, ok? Cool. Make sure you get the two tips next Tuesday by subscribing via email!

Clickity click here!

I love reusing spools from my chain purchases to hold small things… They are usually wide enough that they are more tip resistant than other containers, which is an important feature for me, what with being less than grace personified and all…

I do quite a bit of work either on a high countertop/bartop where I can stand or sit (mostly stand), or sitting on a softer surface with plenty of back support… Things tend to get flung and knocked over (again, another reason why I hesitate to work with glass and gemstones and if I do I always double the recipe) in either location, this contraption prevents that a bit…

Basically, I packing tape one hole, with a little bit of paper so it’s non stick on the inside of the well… I have, in the past, used double stick tape to tape this to my tray table/lap desk/workbench, but in each location I wound up getting too cocky, started talking with my hands (I’m a passionate hand talker…), and kablammmm! small bits (headpins, ear wires, you name it) everywhere….

And, when working from one of my satellite locations, I like to wind my tape measure around the outer portion… So it’s handy…

Another tip? When Target has silicone baking mats in the dollar section near the entrance I grab a few- they are easily cleaned during messy kid crafts (yet they give kids a colorful background and contrast- very helpful for some kiddos) and they are great when working with things that tend to roll away, a little non-slip grip and cushioning…

OK, that’s all I’ve got for now…

Hugs all around,
xo
bek

Finding their mama…

9 Nov

Ok, so my birthday was indeed on Friday.  I am now 33.

Last night and tonight (we are episodic folks) kiddo watched The Nightmare Before Christmas with me (I had never seen it)… He was fine until…

Oogy Boogy is stripped of his clothes and all of the bugs/critters go running and fall into the fire.

Boy was horrified.

I paused and asked him if he was ok.

He said “They are going to find their mama”

(to deal with his fear of bugs-mostly flies- we have taught him to wave his hands and say “go find your mama”… That little concept has made a huge difference as far as successfully keeping the peace and not having a complete meltdown on our hands when dining at the al fresco eatery that my parents prefer…)

Then he said “they went to find their mama and went into the fire and got burned up”

He was so sad and heartbroken…

All of the horrible things he might overhear in a day- on the news, flipping channels on TV, conversations between adults, and the one concept that always hits him the hardest is the idea of someone trying to find their mama.  The idea that the reunion might not occur is just devestating to him…

Shortly after that he declared that he was going to take a big marker and write a line across the top of his head so he wouldn’t grow any more.  The kid is obsessed with growing up and getting bigger (he is very encouraging when the wii fit tells me I’m up .5 lbs… “Yay Mama, you are growing biggest!”…I have to love that someone is happy about that!) and he has declared that he is going to stay the size he is now so nothing changes anymore…  That and he wants everyone to stop working and me to not be so tired and sick so I can play more.

I tell him every night:

“It doesn’t get better than You”

It’s his little insights on everything that make me feel like I am the luckiest Mama in the world.  His sweetness and insights make everything more manageable.  They make everything sweet and they make the world feel safe and warm….

Vacation to Normal…

21 Oct

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…)

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