Welcome to FoggyRock

Micro Loans for Autism BioMed Treatments

by carmel66 on 10.25.08 - public

Many of you may already be aware of Lend4Health.org. It started as a blog site by a mom who started it on her own time - well, ok - it is largely stil...

Title :

Description :

Many of you may already be aware of Lend4Health.org. It started as a blog site by a mom who started it on her own time - well, ok - it is largely still run by this mom in her "spare" time.  
What Is "Lend 4 Health"
Lend4Health facilitates community-based, interest-free "micro-loans" as a creative funding option for individuals seeking optimal health.

Currently, Lend4Health is facilitating loans for the biomedical treatment of children and adults with autism spectrum disorders. Other health issues may be included on Lend4Health in the future.

Lend4Health is inspired by the online lending system at kiva.org.

RIGHT NOW Lend4Health is in the running for a $10,000 award through ideablob.com - a website that awards money to new business ideas based on how many votes the idea receives. Lend4Health has already won the first round of voting and it currently "fighting" it out for the big $10,000 cardboard (but very real) check. 
I've always thought it very unfair that only folks with time, money, internet connections have the hope of helping their children on the spectrum. Personally, since I have found the right doctor (who happens to be a DAN! doctor) have we been able to get a handle on my son's stomach problems. I was turned away from a big city Children's Hospital b/c when I tried to find a doc to help us and they found out my son was on the spectrum I was told - we don't treat autism. Of course this was about 3 years ago. I'm not treating autism - I'm treating a stomach problem. Funny thing is...as his stomach improves, he autism symptoms lessen. Unfortunately, little to none of this treatment is covered by our health insurance. We are fortunate to have the resources to pay for treatment (credit cards and somewhat regular income).
Please take a look at Lend4Health: www.Lend4Health.org.
or look at Tori's video: http://www.youtube.com/watch?v=zyLdfWcR9JY
BUt please go to ideablob.com and vote for Lend4Health
http://www.ideablob.com/ideas/3345-Lend4Health-Interest-free-mic
VOTING ENDS ON HALLOWEEN!! 
Thank you.

Type :

Public Private

Photo :

Tags :

(comma separated)

Worth It?

by carmel66 on 08.29.08 - public

We have an invite to join a friend and her son at the beach tomorrow. Not a big deal - the beach is a five minute walk. I really like her (the mom) an...

Title :

Description :

We have an invite to join a friend and her son at the beach tomorrow. Not a big deal - the beach is a five minute walk. I really like her (the mom) and her son is quite nice too. I'm just so tired of having to work at social functions. I think you might all understand.  Helping my son interact or act appropriately. Helping her son understand that my son can hear him (so don't talk louder or slower) he just isn't able to respond the way you might expect him to respond.  Being forced to draw subways on the sand and not being able to have a conversation with my friend. Being reminded (yet again) of what a healthy seven year old boy looks like and plays like... I don't know if I have it in me. I'm exhausted from explaining and playing and working and structuring and keeping up a brave front and...ugh. This friend, and most friends, understand and are kind - but so much work goes into an outing like this. I don't want to be antisocial, I want people to think of doing things with us - I'm so torn. Not just about tomorrow - about all of these types of events in general...

Type :

Public Private

Photo :

Tags :

(comma separated)

Not your baby...

by carmel66 on 08.27.08 - public

I just saw this story on a website a FR member had listed on their homepage...I liked it so much I'm posting it (with the credit at the bottom). I thi...

Title :

Description :

I just saw this story on a website a FR member had listed on their homepage...I liked it so much I'm posting it (with the credit at the bottom). I think it sums up our feelings as parents (insert the word DAD instead of MOM where appropriate)...

There were two warring tribes in the Andes, one that lived in the lowlands and the other high in the mountains. The mountain people invaded the lowlanders one day, and as part of their plundering of the people, they kidnapped a baby of one of the lowlander families and took the infant with them back up into the mountains. The lowlanders didn't know how to climb the mountain. They didn't know any of the trails that the mountain people used, and they didn't know where to find the mountain people or how to track them in the steep terrain. Even so, they sent out their best party of fighting men to climb the mountain and bring the baby home.

The men tried first one method of climbing and then another. They tried one trail and then another. After several days of effort, however, they had climbed only several hundred feet. Feeling hopeless and helpless, the lowlander men decided that the cause was lost, and they prepared to return to their village below.

As they were packing their gear for the descent, they saw the baby's mother walking toward them. They realized that she was coming down the mountain that they hadn't figured out how to climb. And then they saw that she had her baby strapped to her back, How could that be? One man greeted her and said, "We couldn't climb this mountain, How did you do this when we, the strongest and most able men in the village, couldn't do it?"

She shrugged her shoulders and said, "It wasn't your baby."

Jim Stovall, You Don't Have to Be Blind to See (Nashville: Nelson, 1996), 268.

Type :

Public Private

Photo :

Tags :

(comma separated)

Back to school homework

by carmel66 on 08.21.08 - public

Here is some excellent back to school advice for us:
http://autism.freedomblogging.com/2008/08/19/back-to-school-homework-assignments/
...

Meltdowns

by carmel66 on 07.07.08 - public

Everyone has a definition of meltdown. I realized that when I watched another child with autism meltdown about a year ago. It was an "Ah-ha" moment fo...

Title :

Description :

Everyone has a definition of meltdown. I realized that when I watched another child with autism meltdown about a year ago. It was an "Ah-ha" moment for me. My son had NUTHIN' on this child. Our meltdowns were sad, not tooooooo loud and usually easily resolved. Heck, I'd had worse meltdowns with my daughter and had to sling her over my shoulder and tote her out of the supermarket.  This spring, though, with recurrent ear perforations and infections, strep and treatments for same --- we experienced a whole new level of meltdown. Eight weeks of inexplicable crying, screaming, night terros and head banging. It could happen any minute, for a good reason or - we all know this one - for no reason. And because we had not experienced a whole lot of this --- we were not very good at managing it. We finally got pretty good at managing it by the end of the seige of illness. We had quite a few MAJOR public meltdowns - one when I was alone with both kids in a mall. I call it one of my "true autism mom moments". My son was screaming (thank goodness he's small) and banging his head on the glass wall on the second floor of the mall that overlooks the first floor. He had the attention of the security guard and the Easter Bunny. My daughter started to cry, but pulled out pretty easily when I told her everything was ok, Carson was just sad. Then my son spied the security guard's walkie talkie - ran over to him and they had a good laugh about the sounds it made....and that quickly - it was over. 
Go figure.
I should have slipped that guard a twenty.

Type :

Public Private

Photo :

Tags :

(comma separated)

Share a Photo: Mealtime

by carmel66 on 06.26.08 - public

A favorite - exploring a new food. Back before he stopped eating new foods. I think he's looking at it like it's an alien. ...

How to Survive Autism

by carmel66 on 06.19.08 - public

Here's a little Age of Autism wisdom that I think all of us need to hear once in a while...
http://www.ageofautism.com/2008/06/how-to-survive.html#co...

Don't Waste Your Time On:

by carmel66 on 06.18.08 - public

Woulda, coulda, shoulda - that's what we say in our house. WouldaCouldaShoulda is wishing you could change something in the past:
I should have known...

Dear Teacher........

by carmel66 on 06.10.08 - public

I hope you know how lucky I feel b/c my son was with you this year. You fought for him, you kept me in the loop, you were unfazed by special diets and...

Most Folks Don't Know That I:

by carmel66 on 05.21.08 - public

...don't know what the heck I'm doing!!! Then again, maybe they do and I'm doubly clueless. Joke's on me!!...

When a good friend is ill...

by carmel66 on 05.12.08 - public

My very good friend unexpectedly had surgery Thursday to have a brain tumor removed. She is such a good friend, fun person, easy to talk to --- I just...

Title :

Description :

My very good friend unexpectedly had surgery Thursday to have a brain tumor removed. She is such a good friend, fun person, easy to talk to --- I just love her. She called me from the recovery room to let me know she was just fine...what a relief. The bad news is that it is probably the worst type of brain cancer you could have. The miraculous thing is that it was operable. By the end of the week, we will have a much clearer picture of what is going on. I'm in a weird place - she's not family but she is like a sister to me even though we've only known each other about 7 years. She is surrounded by family close by, but I'd love to help without butting in the way. I will just tell her this and tell her to feel free to tell me to get lost without feeling bad at any time.  I've had a lot of loss in my life - but this feels so personal. We are the same age, have kids the same age, our husband are the same age and insane (in a good way). 
I need to find a way to make time for her this summer in the middle of all of our craziness.

Type :

Public Private

Photo :

Tags :

(comma separated)

I heard it!

by carmel66 on 05.10.08 - public

I picked up my son at school today - I only do that on Fridays. I was putting a few things in his bag and talking with his teachers. He noticed that I...

Share a Photo: Oops!

by carmel66 on 05.06.08 - public

This picture says it all (hopefully you can see it - it's a phone pix). It's the first time my daughter tried Skee Ball.......

On My Refrigerator Door

by carmel66 on 04.16.08 - public

Thinking about this topic and looking at my fridge I realized that all kid related things are low - about 30 inches from the ground. They include spec...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

The Autism Community Agrees That....

by carmel66 on 03.28.08 - public

you are going to need a sense of humor in order to get through this without losing your freaking mind. You need to be able to laugh - maybe not at the...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Baskets, Family Dinners, Chocolate Bunnies.....How Do You Celebrate Easter?

by carmel66 on 03.23.08 - public

This year we will be lucky to get eggs dyed and baskets put together. My son has been incredibly sick since Tuesday. We finally had to take hin to the...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Elevators

by carmel66 on 03.20.08 - public

My son has a couple things that he especially focuses on - one is elevators (another is hotels - but I think that is because they usually contain...el...

Title :

Description :

My son has a couple things that he especially focuses on - one is elevators (another is hotels - but I think that is because they usually contain...elevators!). Think about it - elevators are cool. I remember the first time he really noticed one. I can't remember where we were - it was a hotel in some city and we were sitting in the lobby (probably waiting for my DH to hit the men's room). And I just was looking at my son, and he watched a man get into the elevator. The doors shut for a minute or so. The doors opened. And the man was GONE. He looked at me with this wide eyed expression. It's been love ever since. Luckily he does not need to actually ride them any more. He likes the doors and number panels best. He and his sister were "playing elevator" in our room on vacation. The closet doors were huge mirrored things that slid back and forth on tracks. They loved it! 
More recently, our living room looks like a scaled down version of Boston. The Prudential Center, Customs House, Marriott - all in old boxes. I have built and constructed more elevators and diaramas of elevators and buttons for closet doors to make elevators than most folks. I think, by this point, I should qualify for a pension at OTIS (and yes, we have called them and NO they don't make minitures for sale).

Type :

Public Private

Photo :

Tags :

(comma separated)

Textures: Crunchy, Slimy, Gooey.....What's Appealing, What's Repelling?

by carmel66 on 03.18.08 - public

GOOP!!!!!!
My son is playing with GOOP at school. Whoa! Who is this kid? He wouldn't touch anything wet, slimy - out of the ordinary in general. NOT ...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Stims......

by carmel66 on 03.13.08 - public

Oh the humming...it used to make me CRAZY. But like another parent said - it was because it was evidence of his ASD. He has a visual stim with his lit...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

The First Signs....

by carmel66 on 03.09.08 - public

This topic is almost unbearable for me right now - I'm obviously not at an "at peace, stop beating yourself up over it" kind of place right now.

Th...

Title :

Description :

This topic is almost unbearable for me right now - I'm obviously not at an "at peace, stop beating yourself up over it" kind of place right now.

There were so many signs - but everything was complicated by his dwarfism diagnosis. Some kids with this type of dwarfism have extremely low muscle tone, and miss dev milestones b/c of it. It was explained that dev curves are bell curves and, well, somebody has to be at the end of the curve. So the missed physical milestones, missed speech milestones, etc. were explained away by his dwarfism. But the most telling thing was after he recovered from a really rough Jan/Feb after his 18 month shots he had lost his 5 or 6 words he had. Nobody put the red flag up and we weren't looking for it. We had one diagnosis - we wouldn't get another, now would we?

He finally walked at 3.5 years old. Woo Hoo - and then the visual stimming started and then we put up our own red flags. STILL dev neurologists were telling us not to worry... It just sounds so much like everyone else story - it's just enough to make you scream.

I guess I'm kinda at the place where I see he could go either way - much recovered or stuck. And I'm scared. And I'm mad as I read the news. So I take a deep breath and push forward. There is a lot of work to do.

Type :

Public Private

Photo :

Tags :

(comma separated)

Wednesday

by carmel66 on 03.05.08 - public

Staff Meeting at the house - so running around making things at least sanitary and safe (no toys underfoot in meeting area).
Home visit from home the...

If I Won the Lottery........

by carmel66 on 03.04.08 - public

Hubby and I have an ongoing arguement about this one. If there is a powerball of $140 million - I think "whoa, that would be cool" and he thinks "whoa...

Title :

Description :

Hubby and I have an ongoing arguement about this one. If there is a powerball of $140 million - I think "whoa, that would be cool" and he thinks "whoa, that would destroy our family".  My arguement is that he could work on the things he wants to work on without worrying about politics, money. We would be able to help so many folks with that money. He thinks it would ruin our kids or grandchildren. I say - we make it our job to not have it ruin them. Round and round it goes. I know he has had a real bad day if he starts to agree with my lottery winning viewpoint.

Meanwhile, I know we'd have another battle - he'd want to save the earth (fight global warming via inventions for carbon scavenging, etc.). I'd want to spend it on children's causes - esp. autism. Advocacy of course, but until the medical and insurance industries come around - I would develop a fund for all families to access medical treatment and therapies for their children; and do outreach so everyone knew it existed. And it wouldn't be like the MA waiver where there are thousands of families and less than a hundred waivers.

But hubby always jokes that the odds against winning are so slim we have little to worry about. I say that we have beat the odds in so many things (we have figured that the odds of having a child with our types of disabilities is one in over a million) that playing the lottery could be a no brainer for us.

Type :

Public Private

Photo :

Tags :

(comma separated)

Inspiration

by carmel66 on 02.29.08 - public

Sounds hokey - but my son.
I can't imagine the daily obstacles he must deal with. He does so with a smile and with joy (most days).
He makes other...

Simple Pleasures

by carmel66 on 02.27.08 - public

Easy, early bedtimes. Quiet evening - even if I do have to work.
Cup of coffee and a chat with hubby.
Catching a glimpse of the full moon.
Having m...

Not a good day...

by carmel66 on 02.27.08 - public

This time coming home, our son transitioned away from vacation pretty well. Only one teary-eyed episode, but pretty controlled. Yesterday, was his fir...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Sports

by carmel66 on 02.12.08 - public

What do you get when you combine apraxia, autism and dwarfism? I don't know, but I'm pretty sure I don't have to worry about sitting through too many ...

Title :

Description :

What do you get when you combine apraxia, autism and dwarfism? I don't know, but I'm pretty sure I don't have to worry about sitting through too many sports events waiting for him to get done.

When my son was first diagnosed with dwarfism, we found probably one of the best dwarfism docs in the U.S. - probably the world. Dr. Michael Ain at Johns Hopkins. Dr. Ain grew up in New York and is a die hard Yankees fan. We are just pleased that the Red Sox won a world series or two while we were patients of his....but I digress.

Dr. Ain was a wrestler and baseball player - in college, so he was good. He is a kick ass ortho surgeon and wonderful doc. We tracked him down b/c our son was soooo delayed physically we wondered if there were other ortho issues. After seeing Dr. A - all things were still possible...college, med school, sports, fulfilling career, marriage, children. Turns out our son didn't have any severe ortho issues - just autism...

Several years later I pray that all things are possible. I'm willing to give up sports most of all. It's my bargaining chip with God. I still want college - although not necessarily med school. I think he'd like engineering better.

Type :

Public Private

Photo :

Tags :

(comma separated)

Sibling Stories

by carmel66 on 02.05.08 - public

The kids are playing together more these days and that is...a nice thing. But somedays Carson just likes to watch his sister move the dolls around the...

Title :

Description :

The kids are playing together more these days and that is...a nice thing. But somedays Carson just likes to watch his sister move the dolls around the playground or the city. Somedays he just wants to stim with bendy guy while looking at his favorite book. The other day, I heard a "ruckus" in the living room while cleaning in the kitchen. I walked in and my lovely daughter has her brother's hair in her grasp. And when she sees me - she just smiles. It takes every ounce of strength in my soul to not scream at her and smack her (my maternal instinct is very conflicted at that precise moment - protecting one child and scaring another). I pry his hair from her hand, comfort him, make her apologize and help him understand that he cannot pull her hair in retaliation. I take her aside - after her timeout - and ask "why were you pulling his hair?" And she told me "Well, because he just won't play with me." Ooooh. I explained about different ways of playing, etc. and she felt better - but I can see her starting to learn already about sibling "issues".

Type :

Public Private

Photo :

Tags :

(comma separated)

Traveling: How You Make it Work

by carmel66 on 01.28.08 - public

We've just been so fortunate - Carson has always loooved to travel and has been a good traveling buddy. His first big trip was at three months old to ...

Title :

Description :

We've just been so fortunate - Carson has always loooved to travel and has been a good traveling buddy. His first big trip was at three months old to see his grandma in New Mexico. I would never do it again - but 3 months is a good age to do it. They sleep, cry, poop, eat, poop, smile, sleep. He was a pretty easy baby except he woke a lot and had exceptionally low tone.

We had a rough spot traveling when he was about two, but since then it's been fine. The thing is since he started walking and now talking - he can CHOOSE and INSIST and takes a more active role. Thank goodness his younger sister prepared us for this. We have learned that there needs to be enough "elevator time" in the hotels; bedtime routine needs to be adhered to as much as possible and if something goes awry - we need to explain it to him and then he's fine. For example, at Disney world in December it was our first night there and we went to the Magic Kingdom for the first time. We went straight to Minnie and Mickey's house at the back of the park, in our rented stroller. We went to the 'toy store' in between minnie and mickey's house and got a toy replica of Mickey's house for Carson (perfect - had doors and windows). We went to leave the park - the stroller was gone from where we parked it (common occurrence unfortunately). So we had to take the train and then the monorail and then the cab back to the hotel. We lost his toy house. We thought he was going to have a nutty. But we explained and he was fine, not a tear, not a whimper - but the next morning he reminded us of our promise the night before - "Mickey Mouse House Toy!!!!". 
Seriously, the kid is my hero.

Type :

Public Private

Photo :

Tags :

(comma separated)

Parental Instinct...

by carmel66 on 01.25.08 - public

A memory that always makes me cringe is the time I put Carson in his jumpy chair as an infant and put it on the table. Now, I KNOW you are not suppose...

Title :

Description :

A memory that always makes me cringe is the time I put Carson in his jumpy chair as an infant and put it on the table. Now, I KNOW you are not supposed to put those chairs on a table - but we're talking about a kid that rarely turned his head, let alone actually bounced in a bouncy chair. Plus we were trying to get him off the floor so he could interact with us more. Excuses, excuses - I know but it was what we did. So I put him on the table and noticed something on the floor that just HAD to be picked up. So I was turning to pick up that thing and something say "don't - check Carson first". Then the other voice said "worrywart" and I picked up the thing on the floor and heard a crash. Yep, it was my son and his bouncy chair crashing to the ground. I guess he picked that partical moment for a 'feat of strength'. I swore I'd always listen to my gut from then on. Fast forward three years and we are getting our ASD diagnosis. I'd let Early Intervention therapists and speech therapists, Developmental pediatricians talk me out my worries about his development, etc. I think it partly happened b/c of his size so everyone conveinently forgets he's three not eighteen months. Plus he's our first child and he's got other issues as well, that are unrelated but can slow development.  How did I not listen - AGAIN? How did I let my pediatrican talk me out of it? Never again. Tell me the hard things I tell the teachers and the therapists. I know you love my son, he works hard, he's small and cute --- but I can't help him unless you tell me the hard news.  I have also just reminded myself of this again as we deal with our DAN. Better late than never - ????

Type :

Public Private

Photo :

Tags :

(comma separated)

Over the Weekend.....

by carmel66 on 01.21.08 - public

We have kind of a 'routine' - and I don't know who is more upset when it's different -- me or my son. He can be very easy going, just give him a sched...

Favorite Compositions (0)

carmel66's Compositions