For the love of God! When will this child sleep?! **A Repost From Way Back! Because His Butt Still Don’t Sleep!**

The first night he was born, the nurses kept bringing Ronan into my room.

“He won’t stop crying.  Sorry, hon.  Maybe you should try to nurse him again.”

This went on only every ten minutes or so, until I just said, “Oh, alright already!  Just sleep in my bed with me!”

Thus began a new circle of life for Mami, parent of “The Baby Who Never Sleeps.”

Ditties (the nickname for my boobies), sleep.  Remove ditties, wake up.  Ditties, sleep.  Remove ditties, wake up…and on and on and on.  This lovely cycle was broken up by intermittent hours of filming infant Ronan with one of those old clunky cassette video recorders propped up on the couch at various times in the a.m., when only bats, owls, and other nocturnal animals roam the earth.

I began to look like one of them.  My eyes were black-rimmed.  I was in a zombie-like daze, walking into walls and forgetting proper hygiene (like actually washing myself), and I was obsessed with finding ways to get him to actually sleep without being attached to the ditty.

The Ferber Method = cry until vomit, then cry more.  Never stop crying.  Vomit.  Cry.

Daddy walking and rocking, then slipping Ronan quietly into his crib = bolting upright in 0.001 second flat.  Screaming. Vomiting.

The No Cry Sleep Solution = Ha Ha Ha Ha, yeah right.

For two years, I just caved and gave the ditty.  I learned how to sleep like a fugitive in an escape tunnel, one arm had to curl around the top of his head.  Ditty had to be fully accessible.  Pillows were aplenty, and positioned just so, to support my frozen frame.  As long as I didn’t move – at all – Ronan would sleep, nurse, sleep, nurse, and maybe some nights, he wouldn’t wake up for his 4-hour a.m. stretch.

When I finally decided to wean him (at over 2 years old – that’s another post in itself), a new cycle began in the life of Mami.

It was called, “The Child Who Never Sleeps”

Snuggle with Ronan in his bed until he falls asleep.  Wrench your body out from under his digging feet at 1 cm per hour.  Finally get out of the bed.  Lay in your own bed.  Roll over to finally sleep and immediately see a small figure hovering over you.

Walk back into child’s room.  Repeat.  4 nights out of the week, shoot footage of owl child awake with brand new fancy digital camcorder.

Flash 5 years forward, and I am still walking Nosferatu back and forth to his bed.  Still a zombie.

Everything from melatonin, vigorous exercise, magnesium, joint compression, and a trillion other things have been tried.

I have pretty much resigned myself to the idea of being an old, crabby, gray zombie.  Then we’ll call him …

“The Man Who Never Sleeps”

Feel free to send me your suggestions, please, for the love of GOD!

sleep.jpg

P.S. Don’t let this picture fool you!  I tried to trick him up by putting his little brother beside him to snuggle…maybe they’ll find comfort cuddling each other, and he won’t come looking for me!

Yeah, right.  5 minutes after I took this picture, he was hovering over me…THE CHILD WHO NEVER SLEEPS!!!!!

GOT TANTRUMS? GET GORILLA NEST!

Tantrums are one of the harder aspects to deal with when it comes to most spectrum kids.  At least in this Mama’s opinion.

You can read, research, practice, etc., etc., but when a big one really hits (literally – hee hee), it can be very hard to access all of what you’ve learned – much like the processing of our kiddos!

After a particularly rough tantrum recently, Mama had tried all of the usuals, and they weren’t working.  I had an idea!  I love when that happens!  When you are just at the end of your rope with nowhere to go – poof, out of sky this remarkable idea falls.  This makes Mami very happy.

Anyway, have you ever seen a gorilla nest?  I know more about them than I need to, thanks to my little animal-loving friend    🙂

Gorillas build a nest in the trees, and then they retire to it about a 1/2 hour before the sun sets.  It looks so comforting, relaxing and enveloping – ooh, very beneficial for someone who is spiraling out of control!  lol

I stopped in the middle of my “breathe” “drink water” “sit with me and calm down” routine, and I just DUMPED a butt load of beanie babies onto my thrashing boy!

He stopped and looked at me curiously, like “what the hell is this lunatic doing to me?”  Then…he smiled.

I got the big quilt.  I threw that on top of him, and then I dumped another bucket of the beanies.  Next, I surrounded him with about 20 pillows, and then I packed on more weight with another bucket of the babies.

“I’m making you a gorilla nest,”  I declared.

“A calm down nest,”  he said, finally relaxed and satisfied.

He climbed out to give me a kiss, and then he buried himself back in.  He poked his head out and stared at me in relief for a minute.

I got it, and he was so grateful.

Nothing else in life compares to that feeling.

We are MOVING!

Posts have been scant, as of late.  I’m starting my pet walking/sitting again, and Ronan James has been partaking in a great deal of social/therapeutic activities.  It’s been really good for our spirits, but not so good for succumbing to the muse  😉

Anyway, WordPress has been our blog home for over a year, and we are very grateful for the platform that it has provided.  That being said, I think more visibility is afforded to us at blogspot, plus we can do things there like embed objects, and other fancy things that we can’t do on WordPress.

So, please look for us on blogspot at –www.theronanjamesblog.blogspot.com!!!

We’d be so happy to see you there!!

Autism: Fancy Word for Stupid.

Huh?  A Wha-wha-wha-wha-wha-WHAAATTT????!!!

Granted, this was one of the definitions for autism from urbandictionary.com (not really esteemed in the world of published text definition, but it usually cracks me up), yet some people in our society still walk around holding this belief.

I wax aut and wax off about this daily.  Not about whether persons with autism are stupid or not, because of course, I think they are beautifully unique and brilliant, but just on whether I need to school ignorant people about Ro’s (and others with ASD) intelligence. 

I used to rage like a Mama bear whenever I encountered a comment or a person that was really misinformed about the autism spectrum.  I would pull out all of the facts, give a detailed background on Ro complete with his IQ, and sometimes (regretfully) I’d even chimp him out and make him perform some of his savant skills.   And then I would bitch-slap them – no, not really, but sometimes I would fantasize about this…………………………….

he hee he hee hee………………………………………………

Oh, there I go again, sorry.

Anyway, I think I take it on a case by case basis now.  If I feel it’s important enough, maybe if the person can understand and see a little of how they were misinformed, then I might pass on correction.  Mostly, I just enjoy drawing in the air with my fingers right alongside Ro – that’s a stim that doesn’t hurt anyone, who cares if he likes to do this when he’s just relaxing and not having to pay attention.  It’s actually fun!

I still strive every day to get to the point where I am the most accepting of Ro’s autism as I can be, while still teaching him the skills that he needs to find happiness and independance when he is grown.

It’s a tough balance.

So, what do you autism Mamas do when you meet ignorance with ASD?  Do you bitch-slap them down, or do you just say, “Who cares what they think!”  ????

my-pics-701

p.s.  I’d like to meet someone who actually did bitch-slap some ignorant down.   Write me, and send pics of this if you have any.  Thanks.

Where are the honest studies?

Were there kids on the spectrum when we were growing up?  Sure.  Were there kids with Down’s Syndrome?  Absolutely.  ADHD?  Yup.  Could you go into every school and find a classroom of children speaking in echolalia and drawing with their fingers in the air?  No.  Definite NO.

WAKE UP!  We are not paranoid nuts. It doesn’t take a Rocket Scientist or a “Political Radical” to come to this conclusion…

http://www.youtube.com/watch?v=zrIM2hwrLoc

DO something!  I know I am.

 

 

 

 

“O SEE WHO MAKES MAMA’S LIFE EASIER!”

All Mamas have to balance caring for the kids, work, keeping house, school activities and conferences, time for the marriage, shaving ones legs to refrain from being mistaken for The Yeti, etc., etc., etc.  It’s an exhausting schedule that we try to keep in our society. 

Add a child with special needs to the mix.  Then you must balance the engaging of the stimming child with the ever insistent demands of The Loudon, school activities and conferences, iep meetings, research on getting an advocate to fight for good education placement for next year because next year’s classroom sucks, o.t., p.t., speech, social skills classes, how to teach a 6 year-old hyperlexic savant that is not fluent in English yet and has the attention span of a puppy….breathe…saying sayonara to the marriage, and really laughing hard at the thought of shaving ones legs – not caring at all if small children are frightened by The Yeti appearance. 

However, to avoid my PICA suffering boy from ingesting harmful and disgusting unidentifiable matter, Mama have to do the vacuum!

Enter my new fav soldier in the line of time management….

THE SWIVEL SWEEPER!!!!!!!!!!!

swivellarge

Ahhh, just looking at him makes me sigh with content.  Isn’t he handsome?  He cleans, he isn’t a picky eater, he does his job when I need him to, and he’s very low maintenance.

The best part about him – he plays with the kids, too!  Ronan and Loudon took turns dancing with him across the entire apartment!  And when they were done, the house was clean, and the handsome one went back on standby waiting for me to call on him again!  It’s brilliance.

So, if you are having trouble doing the balancing act, I recommend that you get one right now on ebay – he’s reasonably priced at $40!

Don’t be fooled by those slick damn SHARK sweepers, either!  While they may be more of the pretty boy, they will leave you in the dust!  I went through two of them in 6 months!  Sorry, but Mama needs a sturdy, reliable MAN – and you do, too!!

**Honorable mention goes to THE PANASONIC WET/DRY ELECTRIC RAZOR**

electricrazor

Now, she is a faithful girlfriend that will tell you when you really need to start caring about the fact that you are resembling The Yeti.  She will also quickly remove all of the hair from your legs, armpits and other areas if you ever want to have you some frisky times!  This is very nice of her, and she will do it for you in the name of all the sisters in the world – unlike some unnamed sisters who have their esthetician’s license yet refuse to give you a bikini wax because they like to be difficult *cough* TRACY *cough*  (Seriously, you can’t really still be traumatized by watching me give birth to Ro seven years ago.  Break out the wax, sista!!)

Find this true friend on amazon.com for about $30, and say goodbye to your Yeti days!

I think I may have to make this a daily post of things that make Mama’s life easier…

OBAMA MAMA!!

http://www.autismvotes.org/atf/cf/%7B2A179B73-96E2-44C3-8816-1B1C0BE5334B%7D/Obama%20federal%20mandate.pdf

READ IT AND LOVE IT, BABY!!!  READ IT AND LOVE!!

Now, Ronan James voted for McCain in the school-wide mock election.  After weeks of Obama Mama rhyming songs, all of my training went down the drain!! 

Who did you vote for, Ro?

I voted for John McCain!

RONAN!  After my weeks of training!!  NO!  WHY??!!

I like his name.  It’s easy to say.

Sigh…

roscrunch

Wicked Brilliant Letter to Denis Leary

October 15, 2008

“Real” Firefighter Writes to Denis Leary

FdnyManaging Editor’s Note:  The author of this letter is a real firefighter. Timothy Dwyer spent sixteen years with FDNY before leaving his career to become full time caregiver for his son who has autism.

October 15, 2008

Denis Leary
The Leary Firefighter Foundation
594 Broadway, Suite 409
New York, NY 10012

Denis:

Since you make your living off the backs of Firefighters, many of whom like myself have a child with autism which you have now chosen to make fun of, how about you be a man and come to Long Island and see my son’s school.  Observe first hand my fat, lazy, stupid child suffering from autism.   I bet you wouldn’t last 10 seconds with my son or on the fire floor.   You wish you could walk in my shoes.  I am a founding parent of the ELIJA School for children with autism spectrum disorders in Levittown, NY and a 20 year NYPD/FDNY veteran.

There are many firefighters struggling with autism and all your foundation does is buy tools for the city, just more shit for them to carry. You do nothing for Firefighter’s real problems.  So come on out, get your head out your ass and pry open that fat wallet of yours that was filled thanks to the real characters of the FDNY. 

We are a struggling school and your “humor” doesn’t help our cause.  The only people who can make fun of autism are those whose lives are consumed by it.  Between autism and fires, you got nothing.  Last year we made $25K on our Guns and Hoses Comedy Event.  This year we need to make $50K to survive.  See what you can do brother.

Timothy P. Dwyer
Retired FDNY

P.S. Enclosed please find the DVD of Rescue Me, the complete first season. It was going to be part of a fundraising basket, but is now useless to us.  Consider it a donation to your foundation.  Go buy some more toys for the city.  They lose more money in a day that what it costs us to run our school for a year.  Thanks man.

You go, Papi.

Dr. Jay Gordon Vs Michael Savage on Larry King Live tonight!

http://www.drjaygordon.com/development/index.asp

Kick his ass, man!

Massachusetts Autism Services in Jeopardy!

Please take a moment to read this and HELP!  This is why so many families are in debt trying to give their children the intensive services that their MEDICAL CONDITION REQUIRES!!!

This makes me SO ANGRY!  These babies need CARE!  Just give it to them!

Dear Massachusetts Autism Advocate:

With the stamp of his veto this past week, Governor Deval Patrick has once again told low-income children with Autism Spectrum Disorders that they would not be able to receive the intensive home-based services (including ABA and Floor Time) provided under the Autism Waiver program.  Governor Patrick cut $1 million in funding from this critical program, even though our children are already underserved by this program!  During the initial eleven day enrollment period in November 2007 the families of more than 1,100 Massachusetts children with ASD applied for just 80 slots available under the Waiver.   Hundreds of low-income children continue to languish on the waiting list! 

It is time speak on behalf of low-income children with ASD living in Massachusetts!

Our state legislature recognized the critical need for funding of this program and budgeted $4 million for Fiscal Year 2009.  This would double the number of available slots in the program to 160!!  

Governor Patrick needs to be aware that this already underserved population simply cannot afford to be shortchanged againEvery child with autism deserves the opportunity to have appropriate intensive intervention.  Their future quality of life depends on it.

How Can YOU Help?

1. Immediately CALL YOUR STATE REPRESENTATIVE AND STATE SENATOR at 617-722-2000 and urge them to support an override of Governor Patrick’s veto of $1 million in funding for the Children’s Autism Medicaid Waiver (Line Item 5920-3010). If you are not sure who your representative and senator are you can find out at www.wheredoIvotema.com.

2. CALL Speaker of the House Salvatore DiMasi at 617-722-2500 and Senate President Therese Murray at 617-722- 1500 and ask them to support an override of Governor Patrick’s veto of $1 million in funding for the Children’s Autism Medicaid Waiver (Line Item 5920-3010).

3. Forward this email to everyone you know and ask them to MAKE THE CALL too!!

The override CAN BE ACCOMPLISHED, but we all have to get on the phones to our legislators immediately.  Today is the day that you can truly make a difference for a child with ASD.

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