Medford Follies

Sad...

2009-04-14T10:10:00.002-04:00

I've been in a fog...

2009-01-07T20:10:00.003-05:00

for most of the day. A dear friend of ours, Mima was diagnosed with 7 brain tumors yesterday. He's been struggling with lung cancer for the last 2 years and as soon as 6 weeks ago was given a clean bill of health. We met Mima and Paul *many* years ago (at least 15 yrs) through Lesley and became fast friends. He is the one who dubbed me "the Martha Steward of Medford". Please take and few minutes to keep him in your thoughts and prayers for me. You can keep up with his blog mimaknits.blogspot.com

It's been awhile...

2008-10-29T16:07:00.002-04:00

Wow, I can't believe that I haven't posted since May. Well, now for the update. We had a wonderful summer spending weekends RVing in NH and a week up in Perth. It was great to see my grand mother surounded by her grand children and great grand children. Kids are back in school and as happy as clams. Both are doing great. Dogs, Cats, Rats and Guinea Pig all happy and healthy.
Sarah and Max started hockey again this year and Sarah is in gymnastics. Randy continues to cycle. I'm waiting to hear if I've got a stress fracture in my left heal...Stay tuned.
Hopefully I will start to make it a habit of posting more regularly. Take care everyone...

Meet Lacy....

2008-05-18T08:32:00.003-04:00

Heartbroken and suffering from insomnia, I found myself surfing the web at 1 am one morning in the week after we lost Violet. Of course I end up at Petfinder. I type in Pug...and lo and behold Lacy pops up.
She was found in a shelter by Pug Rescue of New England. She had ear and eye infections, she was dirty, smelly, and was "a bag of bones" according to her foster mom Karen, who didn't think Lacy would every be adopted out to a "forever home" because Lacy is already 8 years old and she is "visually" challenged. In other words, our new little puglet is blind.
The minute I saw her picture online I knew that *we* were her family. We met Lacy and took her home that day...She has intergrated beautifully into our busy household. She loves to snuggle and keep me company on the couch. She has pretty much memorized the entire first floor and rarely bumps into anything (unless of course we move the furniture around).
So as I write this, I am smilling and my heart is happy and full of love for this little pug who brings a smile to my face every time I look at her. She is lying next to me, snoring and snuffling contentedly as I type away. Welcome home Lacy...

Sad News

2008-05-02T18:17:00.002-04:00

Yesterday at about 10:30 our beautiful pug Violet passed away quietly in my arms. The day before she woke up with the right side of her face very swollen and weeping. We took her to see Meg who gave her some pain meds and fluids and referred us to specialist in the same building as her oncologists. We were hopeful that it was an infection that could be treated but by early the next morning she was having breathing and as they intebated her they discovered a huge mass up over her palate and behing her eye. There was nothing more to do...
Randy and I were both with her as she slipped away. We told her what a good dog she had been to us, how much we loved her and how much we would all miss her.
The house seems very empty without her. The kids are sad, and poor Flint keeps looking for his playmate.
We are all so heartbroken...

Introducing Aphrodite...

2008-04-28T20:47:00.004-04:00

Let me introduce you to Sarah's newest friend. She is a Dumbo Rat (notice the ears). Really very sweet. She spends most of her time perched on Sarah's shoulder, nuzlling her ears and hiding under her hair. Her sister peanut spends her time on my shoulder, nuzzling my ears and riding in the hood of my sweatshirt as I go about my daily household chores. Pictures of Peanut to follow soon...

Daisy

2008-04-09T09:03:00.003-04:00

This is Daisy. As you can see, she has a hard life. When she isn't knocking over vases full of water, drinking water from the kitchen faucet or antagonizing Flint (the yorkie). She is napping. She is Max's cat. She sleeps with him, follows him around the house, and *helps* him with his homework...Apparently there is "something" about cats and boys with Asperger's. Tony Attwood spoke about it at the AANE (Asperger's Association of New England) conference last fall. After the conference I started noticing just how much time Daisy and Max spent together and they do have this incredible bond.

Life is good again...

2008-04-06T07:44:00.005-04:00

Violet is doing great! The mass seems to have completely disappeared. She is all done with radiation and only has 2 more shots of her vaccine left.
Kids are also doing very well. Max succesfully compeleted his MCAS (standardized tests in MA)last week and also presented his Science Fair Project on Friday. What a difference a year makes. Last year at this time we were on the verge of looking for some sort of in patient program for Max, in daily contact with our attorney and the stress levels in the house were immense. Fast forward to today and Max is studying the rise and fall of Communisim in the Soviet Union and the sound of his giggling permiates the house. Sarah is a joy and bright ray of sunlight as she skips throughout the house searching for "faerie houses" and "enchanted" objects with her best friend Aviva.
Once again I am blessed to be able to enjoy my children growing up with some sense of "normalcy" each having a "best friend", playdates and school projects. Now, don't get me wrong, living life on the spectrum of autism is and will always be a challenge, but now the daily challenges we face deal are more of the internal workings of living with Asperger's, as opposed to the rights of my child to a fair and appropriate education and basic respect.

And now a word about Violet...

2008-03-16T22:23:00.003-04:00

To continue the animal saga. Violet was diagnosed with Melanoma in January (during the infamous Flint vs the Costco Chicken dietary indiscretion). Two weeks ago they started her on an experimental xenogenic vaccine that has been promising and she had her first radiation treatment on Friday. She did great with both and will continue getting radiation once a week and the vaccine every two weeks. If any of this is going to help we should now in the next three weeks. Keeping our fingers crossed.
Oh, and I think I may have forgotten to mention that we have added to our household in the last few weeks.
It all started when I decided that Sarah was in need of something special. She is always very patient and understanding about being the "token neurotypical" child in most any given situation. She is a junior "buddy" at skating, and probably will be a baseball this spring. She is a good sport at bowling and all of the other "sibling" activities that she attends at Max's School. So I ask her "Sarahbean, you've been doing such a great job being helpful, what would you like that mommy could get you?" I am thinking, American Girl Doll, Spa Day, Girls Day, Day off of School for no reason....Noooo. She looks me straight in the eye and without missing a beat says, "Mommy - I want a RAT". Deep breath..."A rat?" "Yes, mom I want a rat. Max had a hamster when he was younger than me. Rat are smart and curious and they like to be with people - I want a Rat." So I do the old, "Well, that's a big responsibility caring for another little creature, we'll have to talk to Daddy about it, I don't know that that is something that we can do right now..." The next morning she comes skipping into the back parlour from the kitchen. "Daddy said yes, Daddy said yes, I can have a RAT!"
So now we have 2 rats (apparently they need the company). Aphrodite (named of course by Sarah because "she is beautiful, but she can be mischievous and can get herself into trouble" just like the goddess) and Peanut (named by Max, "'cause she's cute...")
Pictures to follow...

Oh how time flies...

2008-03-05T19:44:00.003-05:00

I can't believe that it's March already. Here is an update on what's been going on in the Kay-Baker household. We last left you with the wonderful news of NO CANCER. Yippee! We had a quiet and uneventful Christmas holiday here at home. Then came January 3rd, a day which will forever be etched in our memories as "The day of the $7,000 Costco Chicken". My girlfriend Pam and I went shopping at Costco that day and I decided that I desperately wanted one of those rotisserie chicken. After wanting for what seemed like HOURS (ok, it was only 20 minutes) the chickens were ready and off we went. As usual we were cutting it close with getting home, unloading the groceries out of Pam's car, and making it on time to pick up the kids at school. So in my haste I left the chicken on the counter.

Well...I came home 15 minutes later to find Flint (the yorkie) madly devouring said chicken. Violet (the pug) was sound asleep, and because she is deaf, didn't hear the debacle that was taking place in the kitchen and missed on the foul ordeal. We call Meg (who is now a Vet) she says watch him closely. We do, the next day he is miserable. We bring him in, 2 x-rays later, he is in surgery having LARGE bones removed from his stomach that would have otherwise passed. While in surgery they realize just how bad all of this is. He has developed a severe case of pancreatitis and will require round the clock hospitalization to pull him through, the recommend Mass Vet Referral Hospital in Woburn.

So...I pick up Flint on Friday 5:30 pm rush hour to transport him to Mass Vet Ref. He is tucked into a laundry basket layered with towels and polartec blankets (remember it's January here) he is still very out of it since he has only been out of surgery an hour or two and still has all of his IV lines hooked up. He is in in the front passenger seat. All is well, I merge onto 93 north and we are crawling at about 20 miles an hour and then BAMB 3 car accident. I couldn't make this up if I tried. The guy in front of me gets out (who gets out in the middle of 93 during friday night rush hour I don't know, but he did) and starts swearing and yelling, and here I am - with FLINT next to me - who has somehow managed not to go flying into the windshield. I try to dial 911 - all circuit are busy. WHAT! Try again, same thing, finally third try and I get through. "Are you the car on fire?" the 911 operator asks me, "No" I answer, turns out about a half mile behind us there is a raging car fire.

Anyhoo, other than a bad bruise from the seat belt we were able to drive away. I delivered Flint to the hospital where he remained for a week, not getting any better. The costs were getting up there and we decided to take him home. Meg showed Randy how to give him sub q fluids and shots of anti nausea meds and pain meds. 3 days later he finally started to eat (boiled chicken no less) and has now made a complete recovery. He is back to chasing balls, barking obnoxiously, and being an all around complete, if not cute nudge...

Next installment - Violet goes to the oncologist

NO CANCER!!!

2007-12-22T20:06:00.000-05:00

Sorry it has taken me so long to update everyone. My head is still kinda spinning. We had Randy's appointment with his surgeon yesterday. We waited 45 minutes. Turns out she was on the phone getting the pathology results. The first thing she said as she walked into the room was "Well, you must have been a very good boy to get this for Christmas..." Randy got it right away. Me, not until she actually said the words, "NO CANCER" did I finally understand.
NO CANCER
NO CANCER
NO CANCER
Thanks to everyone for their thoughts and prayers. You have no idea how much it meant to us.
Happy Holidays to everyone...

You never stop wondering - why...

2007-12-19T20:25:00.000-05:00

Sarah is working on a project where she needs to write about her family and provide pictures. This project was due last week, but I asked her teacher for an extension, because of all that was going on preparing for Randy's surgery. Or so I thought. Turns out that it wasn't because of the upcoming surgery at all. I've been putting off helping her because it meant that I would have to go digging through old photographs. Particularly photos of my mom. I have boxes and boxes of them. I haven't looked at any of these photos in years. Sure I have a few photos of my mom around. Hell, there is a 3.5 ft x 4.5 ft portrait of her as soon as you come into the house. I see these photos everyday, I walk by the portrait a least a dozen times a day. But somehow going through all the photographs looking for one of my mom with Sarah was excruciatingly difficult. Mom and Sarah at Disney when Sarah was 5 months old. Mom feeding Sarah her first solid food. Sarah and Mom at Christmas in Ottawa. Sarah and my mom at Cindy's wedding. I know there is happiness and love in those pictures, but I can't seem to see any of that in her eyes in those moments. Sure she is smiling and looks great, but I just can't get past knowing what was to come. The knowing now taints every photo of her that I look at, every memory that I hold. I want to know why, why weren't we enough to keep her here. How could Max and Sarah not be enough to keep her here. I know how much she loved them. Why, why wasn't that enough...
This time of year is always a challenge, I really thought that I was going to be able to sail through this one this year. Last year was tough, first year without Grand Father Jack. This is our fourth year without my mom and it doesn't get any easier. The pain is always there, you just get used to it, and you are left forever wounded.

The Weather Outside is Frightful

2007-12-17T21:15:00.000-05:00

Day 3 home from the hospital and Randy is puttering around, frustrated that he can't do stuff, but behaving. Yesterday dumped about 1 foot of snow on us. At some points it looked like a white out outside the kitchen window. When most of the storm seemed to have passed, I looked out to see our neighbours, the Carroll's, the Maher's, Elizabeth and Elliot, snow blowing, shoveling, and digging us out. How blessed are we...There is no way that I would have been able to manage even getting out the door on Sunday.
A little later the doorbell rings and there is our friend Christina, food, flowers and chocolate in hand. Tom, her husband never does make it in. He immediately starts shoveling out the cars in the driveway.
Without everyones help we wouldn't have been able to get out this morning at all. As it was in my first minute outside today I slipped out on the ice and landed smack my knee on the concrete - so graceful.
Everyone has been so supportive, and Randy and I are very grateful. Thank you to all for the numerous e-mail and phone messages wishing him well.
Randy has a follow up appointment late Friday afternoon, where we hope we will get the pathology results and that Randy won't be going in for round 2. Keep your fingers crossed.

Randy is doing GREAT

2007-12-15T07:17:00.000-05:00

Surgery went as planned and Randy is doing very well.
The morning started off a little hectic. With the huge storm that hit the north east, both kids schools were open BUT Max's bus company wasn't providing transportation. Pam's husband Dan works in the same town and drove Max. After packing up the kids with their overnight bags, sleeping bags, backpacks and lunches, we dropped Max off with the Bybells and then dropped Sarah off at school (and ran into Pam walking Oreo). Then it was off to the hospital. Randy was checked in and then I went off to have some breakfast (in a show of solidarity - I skipped breakfast and coffee - that is how much I LOVE my husband - I skipped COFFEE. Well at least until he was checked in - then it was hello Eggnog Latte...) The wait was excruciating and long. Of course the only 5 minutes that I left the surgical waiting room was when the surgeon came out to talk to me. Randy was in recovery for a few hours before he was transferred up to the hospital.
In the end we ended up with a private room with a GREAT view of Boston. Randy looked very good coming out of surgery. Nothing like he looked after the surgery back in 2003. He was allowed to have dinner and had "Grilled swordfish with Mango chutney, salad with mesculin greens, goat cheese, dried cranberries, and raspberry vinaigrette and Carrot Cake for desert" this was off of the hospital menu!
A few hours later Randy was still hungry, so I scored him a roast turkey sandwich, which he promptly inhaled. Safe to say I think our boy is feeling OK. He did have a little discomfort and headache but was in great spirits.
Thank you to all of you who were thinking of us. Thanks to our good friends the Bybells, the Michas', the Krug-Brandeis', the Carrolls, and Leslie.
Randy is scheduled to be released this morning. Stay tuned

Let it Snow, Let it Snow, Let it Snow...

2007-12-14T00:00:00.000-05:00

Well, Mother Nature decided to dump about 1 foot of snow on us today and here it is midnite and Randy has just come in from shoveling. Our awesome neighbour Tom helped out by snowblowing a good deal of it. I, in typical Rhonda fashion (I tend to clean obsessively and rearrange furniture when stressed) threw out my back at about 6 o'clock when I decided to relocate the treadmill to the other room, which is why poor Randy has been shoveling for hours. The pharmeceuticals, however seem to be kicking in and I am at least mobile.
No eating or drinking after midnite for Randy - so he is having some toast and some ice cream and bananas before we head upstairs to flip the mattress and put fresh sheets on the bed.
Kids are both having sleep over with their respective best friends (a million thank yous to parents Sara and Cindy). Kinda sad that both kids will be away overnight for the first time ever and Randy and I aren't even together...
We are both going into this optimistic and hopeful. Keep us in your thoughts. I will try to update the blog tomorrow nite, but Saturday at latest. Thanks everyone - goodnite

Surgery is Approaching and Becoming Real

2007-12-11T08:58:00.000-05:00

Randy's surgery is coming up faster than we realized, and although I thought that I would be ready, I don't think I will ever be. Yes the presents are all bought and most the of them are wrapped, although I seriously doubt that I will be getting anything shipped to the great white north before then. The laundry is all caught up and the house is relatively tidy (still have to vacuum and change the sheets) and the grocery list is being compiled for the last minute run on Thursday.

I thought that having all of those things taken care off and done would make me feel ready.

Well it didn't work. So today I decided that I would decorate the house - knowing full well that, although this activity will keep me busy and possibly occupy my mind, it will do nothing to make me feel more "READY".

The thought of my husband, my best friend, father of my children, confidant, caretaker and soul mate going in for yet another surgery, with again the shadow of Cancer hovering above it almost unbearable. He is my rock, the strong one and to see him a a hospital bed has always pushes me over the edge (even back before we were married back in Canada - he was in the ER after a cycling accident with his brother Jody, and I swear I felt my knees buckle under when I saw him lying there), I can be very strong for just about anything else, my Mom's death, bathing and shaving my Grand Father after he died while my Dad was going to pick up my Grandmother. I'm good and I can keep it pretty much together.

But with Randy it cuts to the bones.

It is all becoming very real very quickly. The sleepless nights started last week, the bitchiest is full blown and usually ends up being directed at the one I am so worried about(yes I can hear Leslie "Be nice to him he has Cancer...").The nausea appeared over the weekend (I am trying to see the nausea as a positive - maybe just maybe I can loose some of this 60+ pounds I have gained). Whoops, hold please, BRB

- Ok the nausea just turned into full blown throwing up - looks like soda water for me from now on...

We still haven't told the kids (supposed to have last night but didn't) so hopefully will tonight.

Our wedding vows over 17 years ago came from the Velveteen Rabbit-it was all about "becoming real" -

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"
"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."
"Does it hurt?" asked the Rabbit.
"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."
"Does it happen all at once, like being wound up," he asked, "or bit by bit?"
"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."
"I suppose you are real?" said the Rabbit. And then he wished he had not said it, for he thought the Skin Horse might be sensitive. But the Skin Horse only smiled.
"The Boy's Uncle made me Real," he said. "That was a great many years ago; but once you are Real you can't become unreal again. It lasts for always."

How I amuse myself when my brain needs a break...

2007-12-05T20:31:00.000-05:00

Just about everyone uses those little emoticons aka smilies.

I really never paid much attention to them until I saw him...

and I fell in love.

How could such a little collection of lines and circles capture so much heart felt joy and emotion. I mean, just look at him, he is so happy, exstatic even. Oh and joy isn't the only emotion he is capable of.

He can be impatient

He can be sweet

He can get frustrated

He knows how to have a good laugh

He can be comforting

and at times he can be a little shy

Somedays he's judgmental

Other days quite mischievous

Sometimes he feels a little off

And there are days when he is just down right annoyingblah, blah, blah

All in all for some strange reason he just makes me smile

And so I thought I would share him with you...

New update on Surgery

2007-12-01T17:23:00.000-05:00

Got a call last week that they were re-scheduling Randy's surgery from the 7th to the 14th. Of course this happens *AFTER* we cancelled the Disney Trip - but that's ok. Now at least we have a little more time to get every ready (the Gazebo is still up, with the patio furniture and frozen house plants - thank god I finally got all of the flower bulbs in).

How cute is this...

2007-11-29T14:31:00.000-05:00

Sarah and I went to Max's school for their Thanksgiving feast last week. After a serious game of marshmellow dodge ball we sat down and ate. Sarah was dressed in her finest attire (as always) and she was wearing her faux fur pink cape with a sparkly pink jewels broach. A little boy from one of the lower grades poped his head out of the class room and said "Hi, Max, Hi Max's Mom, Hi, Max's little sister..." Max introduces us and Alex disappears into his classroom. 2 seconds later, he pops his head out again and says, "excuse me Sarah, I love you pashmina". Sarah, ever the lady, graciously accepts the complement and says "thank you", only to turn to me and say "Mom what's a pashmina?"
OMG, I could not believe this came out of this little 9 yrs old boy. I mean, I was like - 35 before I knew what a pashmina was... I love these kids

Stop the World I Want to Get Off!!!

2007-11-13T20:28:00.000-05:00

All right. This goes under the "everything happens for a reason" heading.

Remember last June when Randy was hit by a car? Well the cat scan revealed an anomolie in his thyroid gland. They sent him to a specialist. He had a biopsy and another scan. The results came back "inconclusive" - but as we talked more with an endochronologist, turns out they tests weren't so "inconclusive" after all. Apparently the cells present in the biopsy are stastically cancerous in 65% of the masses removed. So...Randy will undergo surgery on December 7th at 8 am. He is opting for a partial thyroidectomy. If the pathology comes back clean then, yippee! He still has part of this thyroid and won't have to take medication for the rest of his life.

If the pathology comes back positive for cancer, then he will have to go in for surgery #2 and have the rest of the thyroid removed. And then later take this radioactive iodine isotope thing, where he will be radioactive for about 10 days. No sleeping in the same bed, no hugging the kids and no sitting next to anyone for more than one hour...

So as it stands. Surgery December 7th (we had to cancel our Disney trip and won't be going home for christmas) released from hospital next day and no driving for 10 to 14 days...and hopefully there won't be a part 2...But realistically speaking - there probably will.

So as my BFF Leslie says - "So like, it was a *GOOD* thing that Randy got hit by a car". God knows I love my Leslie...

Thanks for reading and please keeps us in your thoughts.

Where do I live...

2007-09-14T10:17:00.000-04:00

Max and Sarah on their first day of school.

Here it is the last day of the first full week of school and we are finally *starting* to get into a routine. The kids are happy as clams. Max is triving and Sarah is in her element. I've made out "schedules" for everyone (and they are soooo excited about those--NOT).Transportation is still a little bit of a challenge. Now when anyone asks where I live, I tell them "In a green Ford Winstar".

It's amazing how your vehicle becomes another room, an extention of your home. In the mornings I bring my coffee, a breakfast bar and some water for the ride back. On the passenger seat are a selection of cds, a klennex box, my blackberry and my to do lists. Suprisingly this van has no decorative elements, which got me thinking: This is probably the only thing I own that doesn't have that distinctive "Rhonda" stamp. That's right, not one frog element is present (other than the fact that it is green).

I'll be thinking of a way to make this van "my own" over the next while. If you have any ideas, please feel free to share...

UPDATE

2007-09-05T09:58:00.000-04:00

Here is the scoop. Max is indeed at school today. His new school. Pictured here to your left.

We last left off with me dropping the kids off at Pam's and going to the SPED office. I get there and am *cheerfully* greeted by a sped secretary with "Can I help you?" I tell my story again, and again get that well this is the first I've heard about it look. Then I see Angela, one of the secretaries who doesn't think I'm hiding horns under my hat. See asks if I have heard from Mrs. Brown yet, no I say. "But I gave her the message this morning" she says. She then proceed to call Mrs. Brown and gets her. She puts me on the line with her and after a fruitless conversation her I then have another fruitless conversation with the new SPED director. She seems more concerned with why I have made the effort to go look at the Manville School in Boston.

I have already seem 2 of the 4 schools and we already know that Manville isn't an appropriate placement for Max - not a judgement on the school, it's just not an appropriate placement.

I am more concerned with the fact that I had to find out accidentally that my child had no educational placement on the day before school started.

Again, she brings up Manville. Turns out she used to teach there...Ahhh - everything suddenly makes sense. I tell her my goal here is to get Max in school on September 4th at the SAL. She tells me that that isn't going to happen. Even if she wanted to we could not coordinate all of the meetings and paperwork that need to take place in order for this to happen, and that I need to consider and interview with Manville.

To make the rest of this very long story short, after looking for the Superindendant of schools unsuccessfully, many phone calls to our attorney, educational consultant and 1 hour in the Mayor's Office (I *LOVE* our Mayor and not just because this worked out in my favour either), and a signing of documents by me at 6 p.m. last night. Max is now *OFFICIALLY* registered at the School for Accelerated Learning.

Whew!

No transportation yet, but at this point I am just pleased that he has a school to go to...

And the saga continues...

Do I expect to much from people?

2007-09-04T12:59:00.001-04:00

Ok, here it is, 10:30 am the day before school is to start and I call to find out about transportation for Max. Well, the secretary who takes care of that has no idea what I am talking about.

"What? He isn't going to the Columbus? Nobody told me that. I'm expected to make these arrangements? I have to put this out for bid. This isn't going to be ready for tomorrow. You have to call Mrs. Brown and tell her to call me. I can't do anything until I hear from Mrs. Brown"

So, I take a deep breath and apologize to her and call Mrs. Brown. Well she isn't in her office, so I leave a message. Then I call the Director of the School Max is supposed to be going to. She asks me if I have spoken to Mrs. Brown. "No, why?" I ask. "Well, because she hasn't signed anything, and last time we spoke (last week) she said you were still looking at other options..."

So I call the SPED office, but there is no one there to take my call and I am assured that someone will call be back soon.

It's is now 1:30 pm and I haven't heard from anyone. Zilch, nothing, zippo, nada.

Now should I be a little concerned that my child has no placement for school tomorrow? Max is presently running around gathering all of his back to school stuff (on his own - I didn't tell him to do this) organized. He has been so excited about this day for weeks now. If he can't go to school tomorrow he will be absolutely crushed. How much more emotional turmoil does this kid have to go through? Hasn't he been through enough already?

I am trying to take deep cleansing breaths, but I am so frustrated I am shaking and near tears. My friend Pam has offered to take the kids when she gets back home at 2 o'clock, so that I can go park myself in the SPED office until someone talks to me.

F.I.B.F.A.R.V.A. - Day One

2007-09-03T22:20:00.000-04:00

We finally get up to Salem to pick up the RV and as we are doing the walk around (checking off what dents and scratches are already adorning this beast) we notice that it isn't exactly as *clean* as I would like it to be. Of course the kids are all over it and I am freaking out because I have no purell with me.

"Don't touch anything" I spend my time saying. "why not mom?"

We get this thing back to Emery Street. You would have thought that space shuttle was making a landing. Our neighbours, Pat and Tom (bless them) move their cars so that we would have prime loading area. Once we parked and opened the side door we realized that it opened up exactly in line with their front door - "Hello Neighbours!"

Then the cleaning started - it took about 2 hours. Pat vacuumed (how'd we get such great friends?) and I disinfected every surface I could. Randy washed out the AC filters and the rest was febreezed within an in of its life.

Now Tom is watching us with a bemused look on his face, but doesn't say a word, until, that is, he sees me loading up the expresso machine (and yes that is a photo of our actual machine). "You've got to be kidding me..." What can I say we work hard to keep our neighbours and friends amused.

After another 3 hours of packing, off we were, like a herd of turtles.

We picked up the RV at 2:30 pm and finally hit the road at 8:30.

Drove to a little KOA Campground just outside of White River Junction VT. I have to say that I don't know how Randy did it, but he managed to drive into this pitch black campground, drive around the loops looking for our spot "# 21 in teeny, tiny, numbers, tacked onto a tree at the back of the site. Every empty site we came upon we would slow down, I would hop out and try non-chalantly (remember it's about midnight here) to sneak over to read the number.

Eureka, we finally find it. Randy then begins to pull in. Then we notice that everyone is pointing *out*. Now, I am not sure about Campground etiquette, so here we are, at midnight, and I am our of the RV trying to direct Randy into BACKING into the site.

We actually did it, but we weren't close enough to hook up to the electric. Small crisis. Max wasn't pleased that he wasn't going to be able to plug in his boom box and play some Bobby Darin, but after a *chat* with the kids, everyone settled in for the night.

Woke up, bright and (not) early. Randy pulled out and repositioned us so that we could reach the electric hook up. Plugged in the toaster, had breakfast. Sarah went out and collected some rocks to add to her collection and were on are way.

Next installment -

Day 2 -

You haven't lived until you've peed in the *tiny* bathroom, in an RV,

while traveling up hgwy 89 at 65 mph.

F.I.B.F.A.R.V.A.

2007-09-03T11:36:00.000-04:00

Yes, we actually did it.

First Inaugural Baker Family Annual Recreational Vehicle Adventure.

Now, if anyone would have told me that I would be travelling in a 30ft RV driven by my Dear Husband with the two kids I would have asked them if their meds had been adjusted recently.

We had a blast. Max has been begging for an RV trip since he could talk. When he finally got inside the RV I thought he would explode he was so happy. The two of them ran around opening every door, drawer and storage compartment.

We did feel like the Griswalds for a bid, but after a while we felt like old pros. Randy was pleasantly surprised a how easy it was to drive the dirt road to my grandmother's (what he refers to as the 3 mile laneway...). For those of you familiar with Nanny's, we parked up by the greenhouse and had water and electricity hook ups (this is my idea of ruffing it!).

We had no encounters of the wild kind, although my sister Cindy did describe this fox that she saw.

Cindy: "We saw a really cool fox on our way in"

Cindy: "It was really tall, and skinny"

Rhonda: "Was it red with black legs?"

Cindy: "No, it was kinda like a yellow, brown colour"

Rhonda: "Was it about the size of a small dog and sort of cat like"

Cindy: "No it was big and wolf like"

Rhonda: "That wasn't a Fox, that was a Coyote"

Cindy: "We saw a really cool wild animal on our way in..."

Stay tuned for more adventures...

The Summer went by so quickly

2007-09-01T22:12:00.000-04:00

Well, last thing you all heard was that Randy had been hit by a car. He is doing OK although it was not a pleasant experience. Litigation is pending...Now for GREAT NEWS...

We got private placement for Max! After 2 yrs of tyring to get the Medford School District to do the right thing, they have. (Coincidence that we got private placement a month after the long standing SPED director retired, I THINK NOT!)He will be attending the School for Accelerated Learning in Waltham. It is a day school that specialize in kids with Asperger's. The director, Alex Micheals, has A.S. herself - so she gets it. Both Max and Sarah attended the camp that they run in the summer, Camp Goodtimes, a social pragmatics based camp. They both loved it. "Mom they shouldn't call this Camp Goodtimes, they should call it camp Greattimes!" I am indebted to both camp directors, Laurie Smith and Alex Micheals for the wonderful program they had this summer as well as the School they both run. Max is very exicited about going, he is doing incredibily well. His tics are under control (you would never notice - althought he was diagnosed with Tourette's this summer), he has made friends *real* friends. He is the happy, giddy, smiley, inquisitive, affectionate, little boy I knew was in there. We have our Max back, finally...

Sarah had a wonderful summer at camp as well. She was the belle of her group getting love notes from secret admirers and loving every minute of it. She made a very special friend, Cameron. They exchanged "Monkey" webkinz at the end of camp (does this mean they are going steady?". She is also very much looking forward to school starting. We had a great summer. We rented a 30ft RV and drove up to Canada for 8 days. More on that adventure in the next post. Stay tuned...

Failure to Yield...

2007-06-20T10:28:00.000-04:00

Eeekk, What a way to begin the week.

My dear husband (aka Lance Armstrong) was out for his usual morning ride when he was struck by an oncoming car making a left hand turn in front of him. Well, he ended up flying over the hood and landing on his head (he is now the poster boy for wearing your bike helmet). He was knocked out for 15 minutes or so and was rushed to Beth Israel Deaconess in Boston. The CT scan and x-rays were negative. He does have *major* road rash on the complete left hand side of his face, and this morning woke up with a nasty looking black eye (not something you would ever imagine Randy with ... a black eye). He is home and feeling, well, like he has hit by a car...

The person who hit him was cited with "Failure to yield to a Cyclist" which carries a $35 fine.

Just an update...will keep you all posted.

That's It...We aren't going to take this any more

2007-06-06T17:57:00.000-04:00

Well, we have finally done it. We are going to sue for private placement and compensatory services for this past year that "Redd" has missed out on. We are waiting to hear from an Educational Consultant to observe the classroom "they" recommended - which of course are completely inadequate - not to mention the fact that a kid who tortured him all of kindergarden and 1st grade would be in his class, not his grade, his *CLASS*.

Just to mention this kid's name causes this visceral response in Redd. He got so upset, then said "I never have to think about her again, she is so, so, so out of my life now. I never want to think about her again. Can we change the subject mom".

So...there is no way in hell that I will put him in that position. Not only that but it's no secret that even thought this is a "great" program, that it is what it is, a behavioural program. And when you have a kid that has no concept of social pragmatics and relies on modeling to learn, you don't put him in a "behavioural" program.

Deep cleansing breaths. Again, today Redd was excluded at school. His little sister "the bean" had a presentation in class. Many of the 1st grader's siblings are in Redd's class and they were invited to the classroom. Redd was somehow "out of the loop" that's the term they are using these days. Instead admitting that he has been "excluded", they say "out of the loop".

The Bean did a great job, I can see her on Broadway in no time...

They choose not to "GET IT"...

2007-06-05T10:59:00.000-04:00

So last night my son comes home in tears. I find out later that his aide was absent at school that day. They are supposed to call me to let me know...(They just don't get it - it's a little thing that can make or break his day.) Today they are on a field trip and the aide Mr. RP is with him (thank goodness).

Also find out that my son's special chair, (it's a game chair - low to the ground, wraps around him, rocks, helps tremedously with Sensory Intergration issues) has been taken away and is piled upside down atop other chairs in the classroom.

I know that understanding the way a child's mind with Asperger's works is challenging, but to not even try? My son work twice as hard as any other neurotypical child in that school does. He not only has to contend with learning what ever is being taugth, but is trying to enterpret the teacher's facial expression, his voice intonation, body lauguage, sensory stimili such as the room temperature, brightness of the classroom, the flickering overhead lights, the kids talking in the hallway, the tickling of the clock and list goes on. With all that my son has to contend with during his school day why wouldn't this teacher agree to his accomodations? What is so hard about writing a schedule up on the board? Or perhaps informing my son (one day before or even one hour) before moving all of the desk around in the class (not only does this create anxiety and one more thing for my child to worry about, but the noise alone of 23 kids moving their desks must be unbearably difficult for a child with sensory issues). Not using defecit based lanuguage (this guy *LOVES* using defecit based language - and even thought we have asked him on numerous occaisions). I get comments like "He dosen't mind, he said so". Well my son is always going to say he doesn't mind and then the anxiety builds.

Some nights I am just so sick to my stomach over all of this. How do you protect your children. You send them to school. You make sure that you have the proper accomodations included in an IEP. You try to communicate with your child's teacher (he "lost" his voice mail code so he isn't available via phone - only email or your can leave a message at school - but he always said he didn't receive it). Everyone agrees that your child needs help but no one is there to coordinate and supervise and ensure that the accomodations and the IEP are being adhere to...

and the saga continues...

Tourette's or Stress...

2007-05-30T17:14:00.000-04:00

Well, ever since the MCAS my son has been dealing with disabiling tics. Things got so bad that he had trouble walking, and even fell down the stairs. We finally got an emergency appointment with a child psychiatrist (only after his primary physician - who is at the top of her profession interveened) who prescribed a medication they use for Tourette's Syndrome.

Now I know that Asperger's and Tourette's sometimes exists as co-morbid conditions, but I still have my doubts. The only time he tics is when he is stressed out. This past holiday weekend, he was home for 3 days - and by Sunday night was virtually tic free. When I picked him up at school the tics were back.

It doesn't help that the school has absolutely no routines or schedules in place for him.

Is This Really Necessary?

2007-05-19T11:32:00.002-04:00

Last week was 4th grade MCAS. This is a standardized test that provides data on how well *the SCHOOL* is doing on teaching various topics. Unfortunately the way they test for the school's success is to test the students, thereby creating an incredible amount of stress and pressure on the kids. These are 9 and 10 year old kids. Younger for the 3rd graders (8 and 9).

During MCAS weeks, everybody is in a tizzy. The principal is stressed out, the teachers are freaking out, and this totally upsets the kids. My son is no exception. The last set of MCAS (in February - english portion) left him feeling so down and was completely dibilitating. I was in Phoenix at the time and flew back early. My son (let's call him Redd) Redd's self esteem was so low he would come home crying every day - really not understading where his feelings were coming from, but feeling so despondent that it concerned not only us as his parents, but his diagnosing doctor as well. She immediately wrote a letter indicating that it would be a detriment for Redd to continue any testing with or without accommodation.

Well that wasn't enough for anyone DOE, School District, nobody. So my poor kid had to endure 2 *more* days this week of the dreaded MCAS - this time it was Math - a subject he excells in. Everybody said "he did GREAT", "he was FINE", "no problems whatsover".

I guess no one has noticed the very violent ticks he has developed since tuesday. He scruntches his face so tight and then flings his head back (as if there was hair in his eyes) violently. So much so that he has hit me (hard) in the nose and caused a nose bleed.

What does it take for folks to realize that, again, he might have appeared "fine" on the outside, but now he suffers the consequences. Last time it took about 3 to 4 weeks to calm the tics - with alot of relaxation techniques (mom as therapist) and well as deep breathing, and some talking (again mom as therapist).

How can we continue to subject our children to this stress and even thought we had a letter from his physician indicating that it was expressely against medical advice to have him participate in this test - he still had to take it.

I sit here on this Saturday morning watching my beautiful child ticcing violently across the room from me. All I want to do is wrap him in my arms and not let go. I want to protect from this world, all the while knowing that I can't.

Hug someone you love, right now!

And another thing...

2007-05-17T13:34:00.000-04:00

Ok, remember the fox drawings. I just thought about the meeting in which we brought up the drawing issue. The teacher actually had the drawings with him and claimed that my son was upset not with the fact that he couldn't draw foxes (only immigrants), but the fact that the fox he drew was fat.

I woke up at three in the morning and this thought ran through my head.

He took my son's drawings and brought them with him to this meeting as "evidence".

Who does that? Obviously someone who feels insecure with his actions...

Maybe we should ban Starbucks from the classroom...

2007-05-16T19:26:00.000-04:00

I am always amazed at how teachers who take a class in SPED suddenly become experts in the field. My son's teacher claims that he understand Autism and the "Spectrum", yet he insists that have the entire class move all of their desks around every 4 weeks or so with no warning "doesn't freak out" my son.

Hello, maybe he isn't "freaking out" on the outside, but inside - God it sure explains a lot of his behaviour at home. The teacher in this case is supposed to be an enlighted, forwarded thinking, changing the world one kid at a time kind of a guy. He appears that way - I was fooled. Now we know the truth about this very popular elementary teacher. My son adores him and we would never malign him in front of our child, even thought he sometimes makes my child cry on a daily basis.

The lastest had to do with drawing. Part of my child's coping mechanism is drawing. Right now the interest of the hour is Foxes. Yes, those red, furry little creatures that steal chickens. My son's class was watching a movie on "Immigrants". The classroom was about 95 degrees, the lights were out and my son's desk is at the back of the classroom (contradictory to what his IEP mandates). As is with many kids on the spectrum, it's difficult to hold my son's attention - so he draws. This teacher actually sougth out my child in the back of the classroom and told him he couldn't draw foxes. If he wanted to draw he HAD to draw immigrants.

WHAT!!!

What difference does it make. It wasn't like the other kids were drawing and this was a classroom assignment. No my child was using a proven coping mechanism to deal with a situation where he might otherwise not have been able to participate.

No, this teacher insisted until my child broke down crying.

Here we are 4 weeks before the end of school - and this teacher insists that my child has to draw only pre-approved subjects.

I kept thinking to myself as this teacher was defending his action. Hey Mr. X, what if we took away your coping mechanism, your Starbucks coffee? How well would he cope...But what can we really expect from a genX teacher who wear a t-shirt, shorts and flip flops to class.

I'd had high hopes for this teacher (as last year's teacher was FABULOUS) but alas I was wrong and now my child suffers on a daily basis.