Christmas through the eyes of a child, and…

A momma who received a bottle of “Mad Housewife” cab from my momma. Fitting on some days. I do hope that everyone had a blessed Christmas. We certainly did.

Merriment and sniffles

Needless to say, Christmas was everything that anyone could want and more, but Elliot and I are very sick. I’ve just called for a script for what I think is the worst sinus infection I’ve ever had. Here’s hoping that my client (who just so happens to be a doctor) does not need to see me, as I really don’t want to leave the comfort of my home today. Elliot has a cold that has hung on for weeks and I do believe he has additional teeth coming. Hence the rash from the drool around his poor little mouth.

Indeed, we all had a lovely day, but my favorite part was snuggling on my parent’s sofa with my Wee E.

I do have a litany of other perfect Christmas photos, but these two needed to be posted first. Such a lover I have!

PS – Isaac was so enthralled with the day that I was not even able to approach him. He tore away…running towards more “stuff” in delight. My parents were way too good to our children. Oh, the gifts…so many gifts in all of their glory!

Peace

Posted elsewhere, but well worth re-posting!

Breakthrough

Two.

Elliot has said two words. We have gone from consistent droning for over three months to “hi” – when spoken to and “maaam” – when I pick him up or approach.

And, he is trying so very hard.

Of course, with all that has gone on, I have been really working with him lately and he’s had his fair share of speech therapy as well. I do know that he’s been “under water” until his ear tubes were placed and really, should have been placed long ago. He now listens intently to Isaac’s speech as well and is trying to mimic him. Little brother has quite a vocabulary: mom, da da, ba, Nora, bye, hi, “la la” referring to his beloved Elmo, ball, dog, kitty, and many others. He’s also moving to two-word phrases.

Literally, just within the past few days, I have witnessed Elliot turn a corner of sorts. Jeff has also been spending a great deal of time with the children as I’ve been busy applying Clinique to faces in the evenings. “Daddy time” has been warranted (and lacking) and although he had to be pushed, I do sense that Jeff is enjoying his extra time with the boys especially. Elliot needed it.

What I have noticed is that one has to really get down on Elliot’s level – plainly right in his face – when speaking to him. That’s okay. I’ll do whatever it takes. His attention needs to be redirected at times as well, and that’s okay too. But, however rudimentary it may be, my boy is trying to speak and communicate his needs via additional body language as well. And, he loves the praise he receives when he does get the words out. Laughter and clapping always follows.

Nothing could make a momma happier…unless, of course, he takes a bite or two of Christmas dinner!

He just goes blissfully along.

The doctor said it Tuesday.

“Your son is autistic.”

Oh, and “he has Failure to Thrive syndrome as well.”

I expected it. It came from a doctor who exclusively specializes in Autistic Spectrum Disorder.

Our next step will be to head to the Kennedy Krieger Institute in Baltimore. I’m simply not comfortable with a diagnosis of autism coming from a specialist who deals only with autistic children. I asked said specialist if indeed he cared for any children whom were given a dual diagnosis of T21 plus autism. He does not.

There is just too much crossover in behavioral characteristics. We need to iron out the intersections and apply therapy appropriately. Needless to say, I need to take Elliot to a physician who handles a multitude of dual diagnosis cases, and one particular specialist practices at the Institute in Maryland.

While our visit will have to be delayed until the spring of 2009 due to financial constraints, I will not put it off any further than that. Masses of individuals are telling me to just blow it all off and go with the flow. I cannot follow that recommendation as I am better prepared for the future when given definitive answers…as definitive as one can get when dealing with a spectrum disorder, or perhaps lack there of. In the meantime, the Institute has forwarded a 30-page questionnaire regarding Wee E’s behavioral characteristics, his medical health history and the like. I’d rather send a video!

Well, he does not eat solid food. The local physician noted that we’d HAVE to head to Omaha to attend regular sessions at the feeding clinic. The “failure to thrive” you know.

Okay.

He also noted that we more than likely would have to employ the use of a feeding tube at night, restraining Elliot, as we force the liquid down.

No.

I don’t buy that and I will not further traumatize Elliot with the use of restraining measures simply so he takes 6 bottles of Pediasure per day. I WILL take him to additional therapy sessions and he WILL eat, but I will not restrain him in his crib at night with a tube shoved down his mouth to do it.

In the interim, Elliot is just Elliot. Happy as pie.

Elliot does not feel my heartache. He did not see his sister’s tears when the physician said “autism.” Nora associates this term with the young lad in her classroom that bangs his head in anguish and cries for his momma whenever someone approaches. She did not need to hear the physician’s words, but I could not find a sitter. Even Isaac sees it. He pats me when I cry. But…

Elliot is just Elliot. I tell myself that is what matters. My child is happy. He still loves his bath. He still stares at the Christmas tree and smiles and approaches to pull the ornaments off, laughing all the way. He still loves our white Persian cat and giggles when she paws at him. And, he still adores his red hair brush, probably forever playing with it (or something similar) in his special way. It makes him happy. I make him happy. His siblings and father make him happy. Life makes him happy. No matter what the harebrained piece of paper says, my Wee E will embrace life, because he is delighted to be here. That’s what is of utmost importance. My angel baby is happy. And…the descriptive paragraph found at the top of my blog will forever apply.

That's my boy...

When Isaac doesn’t want to be seen, he lies down, dead in his tracks, and pretends that he is invisible. This behavior is ridiculously cute. Here he is, moments after being reprimanded for yanking Frosty out of the wall and attempting to heave the ornaments that he pulled off of the tree. He’s a handful, but so what. I’d have it no other way!

Lincoln's high school students made my heart smile!

Students work to stop use of 'r' word
By MARGARET REIST / Lincoln Journal Star
Monday, Dec 08, 2008 - 02:58:58 pm CST

The success of the North Star Student Council’s latest project became abundantly clear to its president, Lindsey Homeyer, during a recent calculus class.

The teacher, a substitute who was messing with a highlighter as she stood at the whiteboard, unthinkingly said, “This thing is retarded.”

The students responded in unison.

“No, it’s ridiculous!”

Right there, in the middle of a discussion about derivatives, was proof: The council’s efforts had made a real difference. Their goal was to redirect students’ (and teachers’) careless — and hurtful — use of what the council dubbed the “R” word.

In today’s high school hallways, the word is commonly used in slang, uttered with little regard to its effect.

“People throw it around like it’s nothing,” said Schyler Hearn, another senior and chairwoman of the project. “We just wanted to put out the positive message that this is wrong.”

The idea came from their sponsor, teacher Mike Musil. The issue — reducing use of the word — came up last year at a national student council conference.

He mentioned it to this year’s council members, and they enthusiastically took it from there.

They came up with “R” word awareness week.

Each day, they decided, they’d make announcements over the loudspeaker, giving students information about mentally challenged people.

They’d try to educate students about how many people there are with mental disabilities, about how many families are affected. And they’d try to point out how hurtful the word is to those who know someone with a mental disability.

They ordered T-shirts for council members and white wrist bands for the whole school that said: Stop and think! Don’t be Re … diculous.

They made pledge cards and decided to set up a table in the lunchroom. Each day, a council member would sit at a table with a small pile of pledge cards and wristbands.

Students who signed the card pledging not to use the word would get a wristband.

Before they started, they gave all the teachers a wristband and sent them an e-mail explaining their plans.

They picked a week in November and weren’t sure what to expect.

They knew it was a touchy subject, and they were afraid they’d offend. They worried people wouldn’t take it seriously, that immaturity would override the message.

They were wrong.

“It’s been totally opposite of that,” Lindsey said. “It’s kept going. I’m very proud of it.”

During that week, 350-some students signed the blue pledge cards, which cover a hallway wall.

Council members would hear students catch themselves mid-word.

“That’s re … diculous.”

The council members didn’t want to be pushy about the issue; they didn’t want to get into their fellow students’ faces about it.

They’re students, too, and they’ve said the word without thinking because it’s the way people talk.

“It’s just a cultural thing,” Schyler said.

Amanda Howard, student council vice president, said she’s been around medical places a lot and had thought about the connotation of the word. But she hadn’t thought much about it.

“I tried not to use it but did, without thinking about it,” she said.

Lindsey said now she finds the word ridiculous creeping into her vocabulary all the time, even when she wouldn’t have used the other “R” word.

The best thing, though, is seeing the campaign’s effects continuing since it ended.

“The greatest reward is seeing people stop themselves,” Lindsey said.

The project’s success has encouraged the council members to continue their efforts.

They’ve still got lots of bracelets. So they’ve called middle school principals to see if they’d be interested in doing a similar project. And they’re hoping it might catch on at other high schools.

The three seniors who spearheaded the campaign say they hope it becomes an annual event at North Star. Students already have suggested other words that could be targeted. Such as “gay.”

North Star is still a new school, Lindsey said, and it’s hard to start traditions. They hope this becomes one, and if it spreads, well, it started here, with this student council.

“Our hope is this becomes a tradition, and everyone’s excited about the word of the year,” she said.

That would be anything but ridiculous. That would be remarkable.

Reach Margaret Reist at 473-7226 or mreist@journalstar.com.

Special Exposure Wednesday - Wonder

Elliot is in awe of the tree. We sit and talk about the significance of each ornament. He loves our "tree time."

For more Special Exposures, go here.

Information

So

much

information.

That’s where I’m at currently. There have been so many wonderful people, just in the last few days that are reaching out. I am so thankful!

Sensory…? Perhaps.

Moderate mental retardation overlap? Perhaps.

Social anxiety disorder? Perhaps.

I am brought immediately back to August 8, 2006. Elliot’s diagnosis of Down syndrome was so shocking, but I accepted it and I learned…I learned how to help him and I grew to love the fact that he was blessed with an extra chromosome. But, the difference…the difference was that it was definitive. We knew that his genetic make-up was different, unique and, when reviewing genetic abnormalities, quite common. The research is in place. The therapies are proven.

His health concerns were there and continue to be there. We are presented with new health concerns quite frequently, but physical health and mental health are poles apart.

Autism presents on a spectrum.

A far reaching spectrum.

While we are miles away from a formal diagnosis, I have been armed with new information and new friends and new therapy suggestions…all within the past few days.

The world is a good place, and soon, we’ll find our special place within it…just as we did before.

As Elliot's sister, Nora, stated, "Mom...we KNOW he is an angel...now we only know that he is even more holy."

She's six...and her insight cannot be matched.

Dual Diagnosis

As in Autistic Spectrum Disorder (ASD) and Down syndrome.

Formal appointment on 12-17.

90+% confirmed with pedi autism specialist (who has a child of his own with autism) today.

A friend is telling me not to believe it and notes that Elliot is much like her daughter (who also has Down syndrome). She says she’s been there (as in an ASD diagnosis that was false) and her daughter is not autistic. She is also a highly respected medical authority.

But...

I’m sick.

That’s all.

Sick.

Let the fun begin.

Oh, and pray if you do.

I feel as if he’s gone…my special little person – the love of my life – now someone else.

So, pray if you do.

please.

Wordless Wednesday - Rub-a-dub...dub

For more, take a peek over here.

The conversation went something like this:

Man (in suit with strange tie and slicked back hair): I need a black mascara – LANCÔME, non-lengthening.

Me: Okay, let me see what I can do (flipping out because I don’t know where half of my own products are in Clinique, let alone LANCÔME). And the LANCÔME rep was off for the night.

Man: Well, I have to run over to grab something else, so I will be back in a minute.

Me: Frantically looking for something in the LANCÔME line that does NOT lengthen. Found it. But darn, it’s black-brown, not just plain black. Run upstairs to stock and grab a black mascara for dear man with strange tie.

Man: Oh, yes, that’s the one.

Me: Did ‘she’ need anything else (man was wearing wedding ring)?

Man: Oh, you think this is for my wife; it’s for me (joking tone). I do treat people with that ‘disorder’ though…I’m a psychiatrist.

Me: Well, that’s perfectly fine too (rephrase to “Do you need anything else?”)

Man: Nope; she’s got me trained. I bet you have trained your husband well too, haven’t you? I will go out and get my wife anything she wants. It’s easier that way. (and here’s the kicker) You know, A TRAINED HUSBAND IS SORTA LIKE A FORM OF RETARDATION. I’M KIND OF RETARDED LIKE THAT, YOU KNOW. PERHAPS I NEED SOME TREATMENT.

Me: (stunned that this was coming from a doctor) Oh, like Down syndrome, that type of mental retardation?

Man: (knew that he had hit a cord) Um?

Me: My son has Down syndrome. He’s two. I prefer to use other terms when referring to a delay in cognition.

Man: Well, I’m sorry for that – I was only joking. I’d better get home with the mascara for my wife.

The man was the heck out of there quicker than I could turn around to ask him if he needed a flipping receipt.

I have to say that this ruined my entire night. This man was a professional. A professional who treats people with mental disorders. He ought to be ashamed. I suppose I can “almost” tolerate it when it comes from someone who doesn’t think before saying it (although I generally correct people in that instance as well). But, a psychiatrist?

“The customer is always right.” NOT ALWAYS!

I’m going to go and get myself fired. Do I care?