What a Crazy Week!

The major portion of last week was taken up with getting Jack in to see his pediatrician so that we could get a referral to a neurologist to discuss his food and sleep issues. We saw his primary on Monday afternoon, and Dr. C promised to fax a referral over to the neurologist's office. On Wednesday, I called to try and make an appointment with Dr. K, but they didn't have the referral, so more phone calls to Dr. C's office. Finally got that straightened out and was able to get a cancellation for Friday morning. Woo hoo! But when I told Dr. K's office that Jack also sees a family psychiatrist, they asked to get his records, too. More phone calls and a trip to Dr. M's office early Thursday morning in order to sign a form to release Jack's records to Dr. K. Done and done!

Friday morning we went to see Dr. K. He added another medication to Jack's regimen to "boost" the anti-anxiety meds (poor guy's fingernails are chewed to nubs). The biggest and most unpopular recommendation of all was to limit, if not entirely end, Jack's time on the video games and computer. Dr. K says he's addicted to technology. Well, you can just imagine how this went over with Jack. For someone who has no friends in the neighborhood (except for Miss S, of course) and doesn't play outside, doesn't enjoy reading, has pretty much outgrown the Legos, just what is he supposed to do all day? A big portion of his world at home is playing with his online friends on the PS3, designing game levels and creating costumes. He was sooooo excited about his birthday on Monday and getting the Little Big Planet 2 game he'd been begging for all summer. Needless to say, he was pretty upset by this turn of events. It was hard to take him back to school knowing he was upset. I was worried he would have an "issue" with someone at school, as he was already pretty worked up. 

We were so worried, in fact, that Charlie stopped by the school on his way in to work (late day) just to check on him. He talked to the Principal who called and talked to his teacher in the classroom. Both of them assured  us he was just fine and having a good day.

The video game issue is tough. Charlie feels that Jack is not just playing games, but creating and designing. That's what he wants to do when he grows up. On the other hand, I know study after study has shown that too much technology can change a child's brain function, but then he's not a neurotypical child in the first place anyway so maybe these rules don't apply? For the time being, we've decided to still let him have his games, as long as his homework is finished and he's doing well in school, which he is. We do shut the PS3 off around 7:00 when it's time for him to get in the shower, and afterwards he has a snack and we read for a while before bedtime at 8:30.

On the up side, his new medication is working great! I give it to him, along with a very small dose of melatonin, early in the evening. He's been falling asleep in his own bed (hallelujah!) and one night even slept through the night in his own room! Major miracle! Even when he comes into our room, he's pretty much sleepwalking and goes right back to sleep on his pallet on our floor. At least he's getting the sleep he needs and not staying up till 10:30 or 11:00 at night now. Yay!

Just as the dust was settling on that situation, my 88 year old mother took a fall on Sunday morning while she was out walking Cookie, our Yorkie Poo. I was looking at the computer after church and she'd gone out with Cookie, when a few minutes later she came in the front door and said, "Well, I took a little spill." Fortunately, a kind family who lives in our neighborhood (still don't know exactly who it was) saw her fall, stopped their car and gave her a ride home. I posted a thank you note on our Good Neighbor Facebook page and was pleased to see how many people wrote that they've seen my mom walking the dogs in the neighborhood and hoped she'd be okay.

Thank goodness she didn't break any bones or require any stitches this time (four years ago she broke her wrist, once she bumped her head and had to have four stitches and another time she fell and busted her lip open--nine stitches that time). I took her to the ER and they checked her all out. Also took her to see her regular doctor on Monday morning. She was pretty sore for a couple of days, but is getting better every day. She still has a brace on her right wrist and a bandage on her elbow, but it could have been a lot worse. Bad news for her is that her doctor says she probably shouldn't be out walking by herself anymore. This is going to be hard for her, because she enjoys getting out and walking and considers taking the dogs out one of her "jobs." Up side for me is that maybe I'll get out and walk the dogs, and heaven knows I could use the exercise. Just waiting for the weather to cool off a little bit.

Anyway, that's our past few days in a nutshell. Life is never boring around this house! Thank goodness everyone's relatively healthy and happy. Hope the same for your family!

One Tuesday Morning in September

It was just another Tuesday morning. I'd gotten up early as usual with my not-quite-one-year-old son. My husband got ready and went off to work. Playhouse Disney was on the TV. Just a few minutes later, Charlie called me on his cell, "I'm listening to the sports channel, but they're not talking about sports. Something's going on and I think it must be pretty big. You should turn on the TV and see what's happening."

I changed the channel to MSNBC and at first couldn't make any sense of the pictures I was being shown. A plane crashed into the World Trade Center? And a few minutes later, another plane crashed into the other building? There's another plane out there headed for Washington, DC? And shortly after that, the World Trade Center fell DOWN? How is that even possible?

I stared unbelieving at the images on my television, unable to wrap my mind around the events being shown there. I watched in horror, trying to hold myself together and remain outwardly calm for the sake of my small son playing with his toys on the living room floor.

At the time, we were living in an apartment on the outskirts of Reno. Charlie was working, while I was home with our baby son and my beautiful view of the rugged Sierras off the back patio. My days were filled with Baby Einstein and Bear in the Big Blue House, long walks sandwiched between Jack's morning and afternoon naps, pushing him in his stroller. I was two hours and a mountain summit away from the rest of my family.

I did what everyone else did that day. I called everyone I loved and made sure they were safe. I watched surreal images unfold on TV. Images of tragedy and heroism, co-workers and strangers reaching out to help each other. Firefighters going into buildings and not coming out again, while their engines stood in the street covered with debris. New Yorkers walking across the city's bridges on foot, trying to get home to their families any way they could. Rescue workers unfurling a huge American flag from the side of the damaged Pentagon. Members of Congress standing shoulder to shoulder on the steps of the Capitol singing God Bless America. There were no Republicans or Democrats that day. We were all Americans. In this together.

As hard as I tried to appear calm and "normal" that day, somehow Jack, only eight days shy of his first birthday, perceived that something was not quite right with Mommy. On any other day, I could lay my sleepy boy in his crib, where he would immediately roll over onto his side, pop his thumb in his mouth and go right to sleep. But today he wasn't having any of that. He insisted that I hold him and fell asleep in my arms three times that day, once in the morning, once in the afternoon and again at bedtime. He was too tiny to understand that the world he lived in had been changed forever that day, but he could feel that something was wrong.

As the days went by, we stayed glued to the television, watching the disaster unfold. I depended on MSNBC's news anchor, Brian Williams, in his pale blue shirt and conservative necktie, to keep me up-to-date on the latest developments. By the end of the week, he almost seemed like a member of the family.

That Friday evening, September 14, 2001, three days after the events of 9/11, as we watched the current events on TV, Jack took his first unassisted steps across our living room. As we celebrated this milestone in our baby's life, I thought about all those parents who would never see their babies' first steps. So many loved ones were lost that day. But life goes on.

Those who tried to destroy us on September 11, 2001, failed. We're still here. We owe it to those who gave their lives that day to keep going. Keep living our lives and stay strong as a community and as a country. Life goes on. But we'll never forget that day or those whose lives were stolen on that Tuesday morning.

The 504 Meeting: Every Child's Right to an Education

We had our first 504* meeting of the school year yesterday. In August! Yay! Jack started school two weeks ago, and normally they like to wait a few weeks for a new teacher to get to know the student, but I really pushed for a meeting as early as possible so we could establish some ground rules before things have the chance to go downhill. Better to get some agreements in place early, than having to do damage control later.

Charlie and I spent a lot of the summer reading and preparing for the school year, deciding which issues were most important to address this year. PE will continue along the same path we established last year: he'll participate in everything he's able to, but the PE teacher will allow him to be a coach or her helper during any activities which are too competitive (ie. liable to provoke meltdown-inducing frustration). Aside from PE, our biggest issue is with the dreaded H-word: homework!

Almost exactly a month ago, I read this fabulous article by Elise Ronan, posted on the Special Education Advisor web site: Homework for Children with a Disability. Referring to any child with Autism Spectrum Disorder or ADHD, Ronan says,

"After keeping it together all day in a very challenging environment the child then comes home to hours of extra work . . .

"They walk in the door and absolutely let loose. It can be a fit about anything. It's not really the object of their ire but rather the releasing of all that pent up tension that they have felt all day." 

I like to use the expression "Lightbulb Moment." Reading this article was one of those, maybe even a giant Spotlight Moment, with a dash of thunder and lightening thrown in for effect. This explains the tears, the tantrums, the whining! From the moment Jack gets into the car at the end of the day, he's already stressing about how much homework he has to do. "I'll never get it done! I'll be working on it for hours! Mrs. X is torturing me!"

As much as I try to convince him that it'll be okay--we'll look at it and figure out what needs to be done, I'm certainly not going to make him do homework till midnight and no, Mrs. X is not determined to torture him--he's simply overwhelmed by the thought of having to do more schoolwork after having been in class for seven hours already, as well as by the volume of work required. The policy at Jack's school is 10 minutes of homework per grade level. This year he's in 6th grade and expected to be able to complete 60 minutes of homework per night. There's the problem. He's just not.

After having talked to Jack's doctor about the homework issue at his last appointment, I sent him an email and asked for his support before going to our 504 meeting yesterday. He very kindly sent this response:

"I am in support of a modified homework plan for Jack based  on his disabilities of Autism Spectrum Disorder and ADHD.  I recommend this be part of the discussion for his IEP. Jack is currently able to complete only 20-30 minutes of homework nightly."

With doctor's note in hand, we went into our meeting yesterday morning. A doctor's note is a very powerful thing to have. I highly recommend it. It's like Kryptonite. After handing over a copy of Dr. M's email, both the Vice Principal (the administrator in charge of children with special needs at our school) and Jack's teacher agreed to negotiate a modified homework schedule for Jack.

As of now, Jack is only required to do half of the assigned math problems (focusing especially on the word problems). We will still do our best to get through his vocabulary and grammar assignments, which are easier for him, but we sit at the computer and read the questions together. He gives me the answers, and I type them up and print them out. Part of what was overwhelming him was the amount of writing required to complete his work. Writing twenty sentences out by hand seems like a lot of work to him. It's so much faster and easier for me to type it for him. He's still learning and coming up with the answer, but he doesn't have to do the tedious (to him), time-consuming writing by hand.

Whew! What a relief for all of us! No more meltdowns. No more tears and tantrums. No more losing my temper with him. He's still learning and completing his coursework, but with much less frustration and stress for everyone. We're hoping this plan will help him to better cope with his assignments and make for a more successful year.

*For those not familiar with Section 504 of the Rehabilitation Act of 1973, it refers to the rights granted by Federal Law to students with disabilities. Section 504 bars discrimination on the basis of a disability and guarantees a child's right to an education, despite their disability.