Tag Archives: developmental

Autism & Testing 1-2-3…

21 Oct

Originally uploaded by CleverIndie

This is from our local Autism Speaks’ Facebook page:
***Please note that the Care Mobile will also be at the Autism Speaks SWFL Walk Now for Autism on November 7 at Estero Community Park*****

The Children’s Hospital of Southwest Florida, in partnership with the Ronald McDonald House Charities of Southwest Florida, will offer free monthly autism spectrum disorder screening for toddlers 18 months to 36 months of age.

The first screening will be held Nov. 6 from 9:30 a.m. to 2 p.m. in the Ronald McDonald Care Mobile, located in the Cape Coral Hospital parking lot. Additional screenings will be conducted monthly at different locations across Lee County.

It is estimated that one in every 150 children is diagnosed with some form of ASD, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.

That’s why parents are encouraged to bring their toddlers to the Ronald McDonald Care Mobile for a free screening. Clinicians will use the M-CHAT, with Denver Developmental Screening Tool to assess the toddlers. The screening is not intended to make a definitive ASD diagnosis, but rather to determine whether your child may be at risk and needs further evaluation.

Medical consultants for the project stress that an early diagnosis can make a vast difference for toddlers and their families. They say early intensive behavioral intervention, or EIBI, can make an immense difference not just in the development of the child, but in their families as well.

The ASD screening is conducted by the Neurosciences Center at TCH, under the guidance of pediatric neurologist Jose Colon, MD, MPH, and pediatric psychiatrist Marianne Krouk, DO. The onsite screenings will be administered by an Advanced Registered Nurse Practitioner, who has extensive training and experience in typical child development and developmental disorders.

A physician referral is not required. To schedule a screening, please call 239-985-3608.”

If you have any concerns, I’d make an appointment. For those who think that a pediatrician would have mentioned something during the annual checkup, I wouldn’t put all of my trust in that, though it is getting better. Remember, getting clarification and help for you and your child, is the best thing for your kid and their future, and the earlier, the better.

Just wanted to share….Hope this helps someone…
xo
Bek

A Chip Off the Old SIGG bottle.

8 Sep

Sigg & BPA

Originally uploaded by CleverIndie

SIGG was a company many of us trusted. We were led to believe that we were making healthier choices for our families by choosing SIGG’s water bottles. Many of us recommended their products to friends and family, hoping to spread the healthy message of avoiding BPA.

I don’t feel like we drank the kool-aid. I feel like someone slipped something in our drink, in this case it’s in our water.

They claim the amounts of BPA are not able to leach into the water.

Here is Alex’s bottle. See the chips and the damage to the threads? That’s through regular wear and washing-since June 2008. The bottle is always used with a plastic SIGG “sport” top. Our other bottles don’t look like this, thankfully. Even if the BPA in these bottles really doesn’t leach in water, what about the folks that use their bottles for more acidic beverages? How does their supposed non-leaching liner behave then?

And what about when that lining chips off while the thoughtful Mama, trying to do the best for her kid, screws on the top and that little bit of lining enters his mouth, and travels into his stomach?

Does the BPA leach in the digestive system?

What does that BPA do to growth and development in that kid?

I’m curious.
I’m frustrated. I’m disappointed. I’m angry.

I’m exhausted.

Not over the bottles. Or, not completely over the bottles. I guess we have to assume that if damage was done, it has already been done.  But don’t take that as me being passive because if anyone contributes to the challenges Alex faces in this world I cannot let it just float into the wind as just a hard lesson learned in the trenches.

So what to do? Right now I’m sitting here looking at 5 bottles and wondering what to do.

Will people ever trust SIGG and their new eco-liner? The company is offering a voluntary bottle exchange- send in your old bottles and they will email you a code to cover the cost of a replacement with the new liner, from their webstore, but that is little consolation to those of us who put our health, the health of our families, our cash, and our reputations on the line.

But do we trust the new liner? Will we ever trust Sigg again?

And when will the FDA catch up with Canada regarding banning BPA?

And what will this stuff do to my kid, who probably has ingested a chunk of it. Or what has it done already?

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…)

Quiet….

18 Oct

It’s quiet… The stress of this week, the fight or flight response of Tuesday’s meeting with the school district, has mellowed a bit…

We are not pulling kiddo from his school until we have a better plan in place.  I feel like we were blindsided and given no time to gather people and information as the test results came in and BAM! same meeting we were writing the IEP- with really no idea of what we could include…

So we are on a little mental vacation from planning and researching a change.  Instead I have been strategizing on how to reach kiddo and the three of us have been working together to plan how to help him in the immediate future.  It’s frustrating.  He is overwhelmed, but also relieved…  He told me he was worried about school.

He said, “I fit in.”

I think he fits in right now the way that someone in camo fits in with the forest…I think he blends enough that some of the kids accept him.  If he feels that he fits in then I am so happy about that.  I never had that feeling of fitting in as a kid- not even with my family, immediate or extended, and I struggle with it as an adult, but for the most part I have my tribe. I am loved and I love. And I love that Alex feels loved by the kids at school, even with the constant struggles and the huge differences.  I love that they take him by the hand and sit him down and even though he is often looking off into space (or at the fire sprinklers or ceiling fan), they treat him as an active participant…  When I pick him up from school the kids tell him that I am there and on occasion this one girl who Alex adores will help him clean up his space and remind him to bring his lunchbag to me, at the door to the classroom… She will hold his hand and lead him to me.  Sometimes I get progress reports.  It’s amazing the differences between the two, and he is 5 and she will be 4 soon and there are similarities, but it’s the differences that are so beautiful and startling and it is this difference between Alex and the other kids that keeps him safe in many ways, at least for now.  At least until they start noticing differences as a negative thing.  It happens. It is life. We have so much work to do and what a rollercoaster we are on…

But I wouldn’t trade this experience for the world…

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