Wednesday, March 31, 2010


Alright, deep breath, Deb. Paranoia will destroy ya, eh?!

If in fact someone from my school district is reading this blog, I hope that she understands just how much I love my kid, how much he has regressed since we moved here, and how the right thing to do is to put him in an appropriate environment where he has some shot at achieving goals and being able to live a reasonably independent life. I completely get that funds are tight to non-existent. I am sorry for that and the domino effect of problems that comes with it. But a child is in an inappropriate, HARMFUL situation here, and something needed to be done about it...yesterday.

I may have noted this in a previous post, but a very well-respected school director told me last year in dead seriousness, 'Deb, I don't mean to scare you, but there is a very real urgency to getting your child out of the situation he is currently in.'

This is a person who knows. Someone with decades and decades worth of experience in teaching and advocating for children on the spectrum. She has seen so many of our kids damaged by inappropriate teaching who have ended up--finally, when it was nearly too late--at her schools. Why must we wait until a child gets so far down the wrong path behaviorally before our schools decide it is time to do something about it?

I was telling a friend today about the boy M used to be...the boy everyone called 'an old soul,' 'a seer,' 'intuitive and wise,' 'sweet and gentle.'
We haven't quite taken the full leap off that cliff to the negative behaviors I have sadly heard other parents talk about; he scratches those he works closest with, and fortunately that is about it at this point. He does not self-harm, he does not head butt. He does not throw things. Yes, for this we are very lucky. But since we haven't gotten there yet, isn't now the very best time to take all measures to make sure those things DON'T happen?

But beyond that, let's talk about teacher accountability. If you've got a teacher who is blatantly prejudiced toward a student in her classroom who is significantly lower-functioning from the peers in his the point that he must sit alone at a table with his aide and not participate in most class the point where she 'forgets' to put things in his backpack or tell him about fun things the other students get to the point she 'suggests' he not attend a day at special olympics...well, do I need to continue on as to why he does not belong in this classroom? And shame on you, teacher, for being so horridly insensitive.

If I had the money to send my son to the schools he needs to attend, I would in a heartbeat. But I don't. I don't know anyone with a similar case who does. So I have to rely on the school district to do the right thing and place my child there for me..because that is what FAPE (free and APPROPRIATE education) is in place to do.

So, with that...I will see you tomorrow, district employee. I hope we have a productive discussion about M's future.

Monday, March 29, 2010


It would appear I need to take a break from this blog or censor my thoughts even more than I already do. Is it possible that one of you readers out there has a connection to my school district? Someone operating a Mac from Sunnyvale, perhaps? Because oddly enough, I just got a call from our director who asked me (rather peculiarly) if I'd received her message from earlier today about a meeting time. And she addressed me by saying, 'Is this Deb?' NOT Debbie. NOT typical. Seems a little too coincidental that within moments of my post about her not returning my calls (which I have since deleted) she would call me to check if I'd received her earlier message, don't you think?

In the spirit of my last post: feck, feck, feck. I am not pleased.

Edited to add: Hey,'ve been on my site for nearly an hour now and read 27 different pages. I would love to think that you are a parent, like me, dealing with the trials and tribulations of parenting a child with autism. Unfortunately, I am feeling really skeptical and quite possibly a little paranoid at this moment since this involves MY CHILD and his well-being. Whoever you are, I would love it if you'd email me personally:
Thanks a bunch!

Saturday, March 27, 2010

Team Sports

My is nearing seven years of age. This is the time when he should be signing up for t-ball, joining a soccer team, causing his Mom to make corny jokes about being his chauffeur or putting cheesy bumper stickers on my minivan about being a soccer Mom. (I kid...I would NEVER put a soccer Mom bumper sticker on my minivan. But then again, I also said I'd never get a flipping minivan. Uh-oh.) But, alas, this did not seem to be in his cards...until now.

Our local little league has decided to start a Challenger league...all ages and abilities encouraged to join! Free hats and shirts! Buddy volunteers galore!

I have visions of the other half, B and I cheering from the stands. Of catching a glimpse of that now rare smile of pure, uninhibited joy that M shows when he is really, truly happy. Of him actually running with his buddy and rounding first base; or better yet, touching home plate. Something to do as a family on a Sunday afternoon. Something that makes us bond and feel happy, rather than one that make us feel frustrated and homebound.

And then there are the other visions...the ones that are quite probable. The ones where M hates challenger baseball and refuses to take his buddies hand or move his legs. Or worse, scratches an innocent volunteer when they try to encourage him to play.

We start tomorrow. The other half is out of town, so it will be just B and I. Please don't let this be a disappointment! Please don't let this be another thing that I have such high hopes for and the other half tells me, 'See? I knew this was a bad idea.'

Please help me to not cry in front of the other families from pride or letdown, as I am so prone to do. (or as I'm doing now because I'm a nutcase who is also totally hormonal) I know that these are our people and they will understand, but I want to hold my head high with either outcome and say nothing more than, 'at least I tried.'

And then...we start special olympics swim lessons on Tuesday. And these are free, too.

And soon, I can hopefully say, 'Yes, my son plays sports, too. He swims and plays baseball. And he loves it.'

Thursday, March 25, 2010

My Kid Is Special

Oh, things keep getting weirder, sadder, more blatant, and even a bit funny, in a really warped sort of way.

I had my parent/teacher conference last Friday to discuss M and his 'progress.'

The whole team was there and you could tell that we were all a bit tense, wondering which way this thing was going to go. I was mad at myself toward the end when I realized I'd been doing this goofy, repetitive rubbing of my ring finger thing. I hate that people who are supposed to be helping my child can make me nervous like that.

Everyone kept it low-key. This wasn't an official IEP meeting. But I did take a very intended jab at M's teacher at the end when I asked her if I was correct in having seen some of the kids in his class bringing in things for show and tell recently. When she told me I had, I said, 'Weird. No one told M or I about that. Even though he can't talk about an item, per se, it sure would be a nice exercise in INCLUSION!'

In what I now can tell is a very put-on voice, she told me that 'of course, he can participate in show and tell!' Would we like to start on Monday? Any day is fine except Tuesdays! As though all parents need to do to have their kids included in classroom-wide activities is to just come out and ask!

This, of course, happened right after she informed me that next Thursday (today) was the county-wide Special Olympics basketball day in a town about 30 minutes from our own. She made sure to mention that though he attended last year and seemed to do fine, he might 'get more out of his day' if he stayed at the school with his new paraprofessionals because it's just so 'crazy and overstimulating' there. I told her 'fine,' because who wants their kid to go where he's clearly not wanted? I probably should have insisted that I go with him so that he could be INCLUDED, but I didn't think about that until after the fact.

Here's where I was able to laugh about even more blatant, sad, exclusion of my child...when I told the other half about it, he paused for a moment to process what I'd said and replied with, 'Wait a sec. So you're telling me that our kid is too special for Special Olympics?'


This was so bizarrely funny that I had to share it with my great friend, R, mother of M's best buddy back on the mother ship. We have shared some insanely funny stories in this vain with one another through the years. It's so good to have someone you can laugh about these things with, as completely effed up as they sometimes are. Her response was that I definitely need to get a t-shirt printed up with the saying, 'My child is too special for Special Olympics' on it. Poor Eunice Shriver is probably rolling in her grave over this one!

I just got home from picking M up from school and asked his aide how his day in exile went. She told me that he was pretty aggressive all day, but that maybe it was because they spent it in a new classroom...the typical 1st grade class. Now, I am all for inclusion, but let's not push the poor kid into an inclusive situation when he's pretty much just being set up to fail. For him, recess, music, art, etc. might work okay, but not for the full, academic day. So instead of M being with a huge group of special needs kids where he wouldn't have been weird, annoying or disruptive if he'd been aggressive or overly vocal, we have instead allowed him to 'get more out of his day' by putting him in a class with a bunch of typical kids who have a much easier time of focusing and remaining quiet. Gee, I wonder what they all thought when he lashed out at his aides during the day? I'm guessing they thought a lot more about it than his buddies at Special Olympics would have, and that pisses me off royally.

I left a message with the special education director for a face to face meeting. I'm so sick of this crap and realize that even with excellent new aides from a reputable outside agency, M is NEVER going to make any progress as long as he is in such a hateful environment.

Monday, March 22, 2010

A Quick EEG Update

This day was T-I-R-I-N-G, to say the least, but we got through it.
I received the results from the neurologist this afternoon and was told that there were no obvious signs of Landau Kleffner syndrome.
He does, however, have what he called a 'rare right wave spike on the right frontal lobe that is consistent with children who have autism.' Haven't done any research on this yet, but he said it puts him at a higher risk for one day having seizures. At this point, however, he feels he still has a good chance of NOT having seizures. Not sure what science leads him to feel that way, but this is what he said.

The other half and I will make a follow up appointment with him soon to discuss the various medications available to kids like M and to learn more about their pros and cons.

Stay tuned...

It's 4 am...Do You Know Where Your Child Is?

I think only you east coasters will remember the on-air PSA that ran in the 70s and early 80s...

Anyhow, it is 4:30 in the friggin' a.m. and I'm dressed and attempting to be 'perky' with my poor, sweet M who can't for the life of him understand why the hell we're watching 'The Little Bear' movie at this ungodly hour. Waking him was not pretty, and I've got a couple of fingernail marks in my arm to prove it. Of course, this time, I totally understand why he dug his nails into me in frustration. I'd be frustrated too if I'd been kept awake until midnight and only allowed to sleep for four hours after that before someone rudely awakened me in the dead of the night.

And what's worse is that I can't even give the kid food or water to attempt to get his systems working, so I've gotten up from the couch about four times already during typing to prop his body upright and encourage his eyes awake.

Alright, 'Little Bear's Canadian accent was too calming for him and we've now switched to a little more upbeat programming. And now I've opened the windows in the hopes that the cool air will awaken him. And now I've removed the cozy blanket that he keeps pulling over him. Did I mention yet that this sucks?

We will leave by 6 a.m. to drive an hour to a hospital where they'll sedate M and perform an EEG. I realized I'd forgotten to update everyone on the results of the MRI that we did nearly two weeks ago. Normal. His brain looked...'normal.'
Metabolic panels, thyroid function, enzyme count and white blood cells....all good.

I have my own goofy reasoning for being glad that the MRI came back normal and for hoping that the EEG shows seizures that we aren't aware of M having. I want something fixable to be at the root of his regression. I want someone to say, 'here, take this pill and you'll get some of your kid back.'
I'm not making bets that this will happen, but it sure would be nice.

I think once we are on the other side of this test, the other half and I will likely start our newest, new normal in this life of autism. We will have to have conversations about things we don't necessarily like to talk about. And we will have to figure out how best to move forward in a way that is beneficial to each member of our family. We all love each other most of all and need to keep that in the forefront of our conversation. We are a unit, and right now our cogs are ridiculously out of sync which isn't healthy or happy for anyone.

Oh, good. It's almost 5 a.m. Almost time to make a pot of coffee!

Wish us luck...

Thursday, March 18, 2010

How Much Is Enough?

It's been rough around here again. Damn. I hate even typing that. I totally get whining mother of the past two years.
I almost blogged last night after a very raw and real, holy-shit-I'm-losing-it, kind of evening that ended with a giant bowl of Ben & Jerry's Half Baked ice cream. (Thank you, Ben & Jerry. It was just what the doctor ordered!)
M has been a stimmy mess. And the stims are vocal. And they are LOUD. So basically his entire time at home, post-school, is spent flapping his arms, pacing around the room, and escalating his voice with total gibberish and the occasional recognizable word. (His latest is 'Tunnnnnellll!' a word we always all yell when passing through a tunnel)
I wish I could blame all of this frustrating behavior on gluten infractions (M has been gluten-free for two years) and have them magically disappear once the gluten is out of his system, but let's face it, gluten or not, he is still...severely autistic.

But here's the frustrating and confusing thing about the's been B's 'fault' the past two days that M has eaten gluten. We've entered a little phase whereby B does not sit through an entire meal without getting up multiple times. I have to admit that this does not set well with me. I am a firm believer in sitting at the table until your done. I know that I'm going to have to instill this in him a bit more by actually taking his food when he leaves the table. It's not really fair to blame a three-year-old for his brother's issues, which makes me feel really terrible when I tell him to please pay attention when he's got bread or pasta on his plate. How the hell is he supposed to remember that sort of stuff?

And onto food in general...the food obsession thing has gotten OUT.OF.CONTROL. Not only does M spend his time fidgeting and vocally stimming when he is home, he also spends it hunting for food. I have to know where he is at all times because if I don't, I'll likely find him taking a bite out of a tomato (which he doesn't like) or biting into a banana peel or even an onion. I'm at a loss as to where to store my non-refrigerated fruits and veggies so that they are out of his reach. The boy is crafty. And if I make myself something to eat and turn my back for a second, or go to get a glass of water to go with it, I will inevitably turn around and have missed M in stealth mode, sticking his fingers in it about to take a bite.

Cooking is no longer a fun or relaxing thing to do. I spend way too much time herding him away from things I have just chopped, and worse, from sticking his hands into pans on top of the stove. He never used to do this!! What the hell is going on?

I know that this concern over gluten infractions is why doctors and nutritionists suggest that an entire family go on the diet together. I get it, I really do. I also know that it would probably be very beneficial for all of us to be gluten-free.
But you know what? I'm fucking tired of it. I'm tired of doing a thing that I don't see 'wow-me' results from. Yes, he turns into a hyperactive maniac when he gets a bit of gluten accidentally. BUT HE IS STILL SEVERELY AUTISTIC. Yes, his poop is more formed since we started the diet. BUT HE HAS SINCE REGRESSED TO BECOME SEVERELY AUTISTIC.

And then there are the supplements. I am a big believer in vitamins, always have been. Blood tests have shown me that M is low on iron, calcium, magnesium and vitamin D...this part is not hocus pocus, it is medically there in front of me to see as necessary. But you know what...even if I try to bolster all of those things that the lab tests show me he is lacking...wait for it...HE'S STILL SEVERELY AUTISTIC.

When we were on the plane home from Kauai I lost my cell phone for a bit. It turns out, I'd set it on my chair next to M and then gotten up to grab something for B. M had grabbed the phone and somehow hid it (not intentionally) underneath him. I was so worried that I'd lost the thing that the other half even had the flight attendant come over with a flashlight. The attendant asked me to tell her when I found it, so I did. It's hard to explain why your child didn't just tell you he had your phone, so I briefly explained the situation by saying that my son is 'non-verbal.' Afterward, the other half looked at me a bit offended and said, 'M isn't non-verbal! He talks!' It hurt my heart because I know that this is what he wants to believe, and here I am getting into that 'realistic' stage with him still lagging just behind me. M does not express his needs. Yes, there are a few recognizable words, but you know what? HE IS NON-VERBAL!

Clearly all of this has me worked up. I want so desperately to help my beautiful child and to bring him more into my world. It makes me feel horrid that our afternoons are spent annoyed at him and on edge because there is never a second without movement or sound. (funny...I just typed that and he is actually sitting still with his chew tube, barely making a sound right now. Oh, wait...never mind. There he goes again! I swear, that really just happened that way!)
And poor B, the world's most compassionate and patient child has even started to get bothered by M's sounds. He actually said to him the other day, 'M! Stop making your sounds! You need to say things like I want to play with you, or be my friend!' I told him he was breaking my heart--and he was--but being the funny boy he is, now every time he tells M to say real words he immediately turns to me and says, 'Am I breaking your heart, Mom?' Oh, that boy....!

Our Dan! doctor wants us to try an elimination diet next. He is without answers too and freely admits that our next step may need to be medication. Though I was at first open to the idea of an elimination diet, I am now at the point of saying, 'screw it.' Screw the diet. Screw the vitamins. Screw the no-prescribed-medications belief. We're all a bit miserable in each other's company at present, and this is just no way for a family to live.

I'll shut up now...and I may even get myself some more Half Baked ice cream.

Monday, March 8, 2010

Finding Your Spot

This was one of the first things I posted when I started this blog in July, 2008. Back when I thought I'd use this space as a platform to be witty and flex my writing skills.

Laugh with me now, will you? BWAHAHAHAHAHAHAHAHAHAHAHA!

Duh...OF COURSE this was going to turn into a place where autism and parenting would prevail. Who was I kidding?

Anyhow, we have lived in Northern CA for nearly two years, and if you know me, you know that this is about the time that I start getting itchy feet and wondering where I'm supposed to go next. The longest I have lived in a house since probably 1992 is 26 months. I am not kidding.

So I took the 'Find Your Spot' quiz again and came up with similar results...a slew of locales in Oregon, this place that I sort of idealize in my head. I can't help but wonder if it's THE spot for my family. Better cost of living, better schools, more attainable/affordable private schools for autism, beautiful coasts and mountains, progressive people, etc. etc.

So where do you think the ideal life could be lived for your family? And let's gather some information here if you've got it...where are the best services for kids with autism? I have heard Washington State and Connecticut. What have you heard?

Looking forward to hearing what everyone has to say...

Saturday, March 6, 2010

Good In This World

I wrote the following for today's post at Hopeful Parents. Check out the amazing writers when you have a chance!

I wanted to share a story of a recent trip our entire family took to Kauai. It was a wonderful trip for the most part, that could have easily been overshadowed by the craziness that was our experience of trying to get home.

We had a red-eye flight booked and were nervous enough about the prospect of the kids only having five hours in which to get their night's sleep. When the flight was delayed until nearly midnight, we tried to put on a cheery face and make the best of it by returning to our resort for an impromptu, moonlit picnic on the beach where my youngest fell into a deep slumber on one of the lounge chairs.

Kids are so lucky to be able to fall asleep like that; tolerating transfers to and from rental cars, and even managing to stay asleep through security...and for the next four hours that we were trapped in the Kauai airport before they finally called 'uncle' and decided it was time to shuttle us all to a local resort...the same resort we'd been staying at for the five days prior.

My older son, M, has severe autism. This makes for an added layer of excitement when traveling. Oddly enough, he did much better on the long flight to Hawaii than his typically developing little brother did; a fact we commended him on many times throughout the trip. And to our surprise, he was a total champ with the flight's delay and even finally fell asleep in his chair as we waited--and waited--for the news on whether or not the mechanical problem they'd reported to us as we were literally a step away from boarding the plane, was going to be fixed or not.

I think all 130+ of us did a relatively good job of remaining calm and lighthearted through this annoying wait. My husband quietly chanted, 'Go, Sully!' after the captain told us he was a husband and father of five and a (chuckle) 'safety guy.' (Gosh, I hope all pilots are 'safety guys!) I mean, none of us wanted to fly over the Pacific ocean on a faulty plane...but there did come a point where we all realized we weren't getting on that plane that night, so why didn't the airline come to the same conclusion before 2:45 in the morning??

By this time, some people were getting restless. The not-very-customer-service-oriented airport workers didn't quite think their plan to get us to the hotel through very well. They decided to let the first class, platinum status, and people with special needs leave the gate area to collect their baggage first. Oddly enough, our family fit all three criteria...we were on our way to getting the hell out of there, finally!

But they didn't give us time to actually wait for our luggage on the carousel before they let all of the other people out too...and so, the free-for-all ensued as people rushed and pushed, attempting to grab their luggage before the rest of us so that they could get a better spot in line for the shuttle.

The other half and I were holding about 90 lbs. of sleeping children, two carry-ons, and pushing a cart with three pieces of luggage. Our backs hurt. We were tired. And when about 20 people...none with young, sleepy children, mind you...cut in front of all of us and refused to acknowledge the few passengers who were willing to stand up for what was right and tell them to get to the back of the line, I started to feel that burning in my throat I always feel when I get myself upset about people behaving unjustly and unkindly to their fellow humans.

M must have felt the unrest, too, because he woke up in the other half's arms at this point, very confused and upset by what was going on around him. The other half quickly wisked him to sit on the sidewalk away from the line as people stared unabashedly at him. Now the burning in my throat was turning into tears as I held back from screaming at these people, 'You have no idea what this amazing little boy has accomplished by holding it together for these past four hours!!' So instead of making my own scene, I decided to be proactive...I approached the airport employees and told them that my son with autism had done amazingly well thus far, as had the other small children patiently waiting at this ungodly hour with their families. I told them that I knew this situation wasn't their fault, but that they had to take control and allow the people with special needs and young children to get on that bus (wherever it was) before the rest of the passengers.

I took my place back in line and noticed a woman rushing over to the same airport employees. This same, kind-faced woman had been smiling at M much of the time we were in the waiting room. She asked the employees where the little boy with autism was, and they awkwardly pointed to M who was still wailing and confused with the other half. My husband came over to me after that, handed me M and took B in his place and said, 'This kind lady is going to take you and M to the hotel so that you can check in before everyone else gets there.'

I lost it. Totally, freaking bawled my eyes out, right then and there. In this crowd of people--many of whom couldn't give two shits about anyone but themselves--this woman made sure to help out someone she knew needed it. I gave her a huge hug as I attempted to collect myself and get us into her husband's car.

It turns out that this couple was from Texas--or the mother ship, as I refer to it. The place where I am from, and where my heart still longs for at times like these. Her husband is a traveling orthopedic surgeon and they were living on the island for a year. Nancy, the woman who 'saved' us, told me that she worked with kids with special needs for many years.

I gave them both enormous hugs--hugs that felt like I was hugging my own parents--and thanked them from the bottom of my heart for helping us out. M had gained his composure by this point, as had I, and we were able to check into our hotel room before the long line of passengers arrived.

I still can't recall the story without getting a little choked up. It sounds like such a small thing, but it was really an enormous gesture that helped restore my faith in humanity a tiny bit.

So, to Nancy & Dave of Cedar Hill, Texas...bless you. I hope you know how much your kindness meant to my family.

Friday, March 5, 2010


I am hesitant to post this today, but I think it will help me to hear some positive stories and to get a bit of good mojo in the works for me.

I have had some thyroid trouble since B was born. Though blood tests showed everything to be fine, I have not felt fine in several years. The tough thing about thyroid issues is that just about every symptom I have can be attributed to my daily stress. But something has continued to nag at me, telling me I needed to keep an eye on things.

I decided to make another appointment with an endocrinologist I saw nearly two years ago. I felt like I was dismissed a bit quickly the last time I saw her, but yesterday she really listened to my concerns. Symptoms aside, there was no denying the fact that I have a very enlarged goiter (what, am I 80? Geez!) that is quite visible in my neck. I have constantly swollen lymph nodes in my neck as well as an often hoarse voice which are of great concern to me as well.

I am waiting to hear back about the six (gah!) vials of blood they took from me yesterday, and then I have an ultrasound on Monday morning. The doctor does believe I have some sort of nodule in there, and if the ultrasound shows something, I'll then have a fine needle biopsy done. She speculated that my issues sound like Hashimoto's Disease, which I know is very common and very treatable. Regardless, a Mama just can't help but go over the 'what ifs' and get a little bit nervous.

On the flip side, if they do find something and they can safely treat it, I would be oh-so thrilled to know that I haven't created my own feeling-like-shit destiny over the past few years. And even better...maybe I'll drop these 10 lbs. that have crept up on me from out of the blue! Always have to look on the bright side, eh?

Just to let you know how warped I can be at times, though, I did mention to my husband last night that I sure would be pissed if I ended up having cancer that required chemotherapy treatments to cure. I have painstakingly grown my hair long(ish) for the first time in nearly 20 years, and I'll be damned if I'm going to lose it all in clumps after working so hard to get it like this! Vanity's a bitch, ain't it? But I would rock me some cute freaking wigs if I had friends totally know that I would :)

So just keep me in your thoughts if you have more to spare. I feel like I have needed so much from my friends over the past several years, and I can only hope that I gave enough to each of you before that. This libra needs to keep the scales even, you know!

Wednesday, March 3, 2010

Vacations With Children Who Have Special Needs

Someone posted a link on one of my autism support boards about a family camp for kids with special needs. They'd heard great things about I opened the link because, who knows, maybe this is something we'll want to do one day?

As I read the descriptions of the new log cabins complete with full accessibility for those with special needs...and then I read that there was an airport nearby 'just in case a medical necessity required one to need to fly out for an emergency'...and then I saw the photos of the medically fragile children and the children with Downs happily being hoisted into the pools...and I cried.

I cried because I know the other half would never go for it. I cried because there's still this part of me that doesn't totally feel like we fit in with the families that can fully embrace these sorts of camps. I cried because I selfishly want to go on 'normal' family vacations without them having to be total safe zones for my child.

I have not yet blogged about it, but we took a very spontaneous and wonderful trip to Kauai two weeks ago. The kids were out of school and we were feeling the need for a getaway. Fortunately, the other half had been saving up Marriot reward points for years and we had enough for a free, five-night stay pretty much anywhere. When you live on the west coast, last-minute travel deals are definitely available to Hawaii. The other half booked our tickets at 6pm and we were in the air by 9 am the next morning!

The trip really was fabulous--well, except for our delay in getting home, but that's for another post. M did amazingly well on the long flights and was overall a champ on most of the trip. But there were those little letdowns that I tried very hard to not let overshadow a trip of mostly successes. For example, I really, really wanted to take the kids to a luau. I thought they'd really enjoy all of the dancing and drumming. We went to the most-amazing Hyatt resort and even had the chef prepare M a special, gluten-free plate. $250 spent and I had maybe five bites of a plate the other half had to prepare for me and one, weak mai tai. M just couldn't/wouldn't tolerate it. And this is not a child who has sensory sensitive issues. M LOVES music and drumming...usually. And even B got in on the action. We seem to have hit the terrible threes combined with his need to cause a bit of drama when his brother is doing the same. It was so thoroughly disappointing. I had to really force myself to not dwell on it once we left.

I realize just how whiny this all sounds and I also realize I need to focus on the great parts of the trip--chilling by the pool, playing in the sand, driving to Hanalei. But I can't help but wonder if we'll ever get to a place where our blood pressure remains low during an ENTIRE vacation. Is it possible? And if it is, does it have to be in a special setting? As I have said before, we are in such a transitional stage of our lives. Acceptance of our new normal comes only with time and practice, and unfortunately at different paces for each member of our family.
But we will get there. And we will find our purpose and our path in this world.

You all are helping me achieve that with your support. So thank you!

Monday, March 1, 2010

Small Victories

It's prudent to mention something bright amidst the other noise. Last week two energetic, young, TRAINED, paraprofessionals were hired from a non-public agency to be M's new aides during the day. WOOHOO!

These two women are from a well-respected agency in our area and have worked extensively with children on the spectrum and are trained in behavioral techniques.
I am remaining skeptically optimistic about the effect this will have on M, but am so thrilled that his primary interaction will no longer be with people who don't understand him.

This does not, of course, change the fact that he is in a ridiculously over-stimulating classroom with a teacher who finds him a burden. Her latest snub was to not let us know that they were doing Valentine's cards or having a party. I called her out on it when I walked into the classroom and saw all the children working excitedly on their cards. She sort of brushed me off with a 'Well, I just forget to put things in his backpack.' M rarely has schoolwork or notices in the backpack he carries to school every single day.

I am working on that part of things and will hopefully get him moved to the other special day classroom where things are a bit more disorganized in some ways, but at least the teacher is extremely loving and kind; traits that can make all the difference for my little guy.