Waiting & The System

I wish I had a fabulous update from the school, but alas I have not heard back. However, given our last email communication, I am waiting as patiently and optimistically as I possibly can. That was fairly easy to do until today when I realized that tomorrow will be one week with no word. I'll keep you all posted!

Next off...our system sucks. Which system you ask? Well, all of them, frankly. The bureaucracy, paperwork and wait times are completely insane and unnecessary. (well, most of it, that is)
We began the process of getting services from our regional center last November. Once you have the initial meeting with them, they have 120 days to have you assessed by their doctors. Now, granted I did put them off two months when I fully thought we were going to move back to the mother ship, but if you don't count those two months, it has taken us four months to get a social worker assigned to us, and it will take another 45 days for any service we'd like to be considered for. Okay, that's doable, but there is a catch...based on our salary, we would be responsible for 100% of the cost of said services based on the family cost share benefits chart the regional center supplies you. Well, clearly this wouldn't make sense to us since, well, where's the benefit? And let me add here that I am all for paying my share. My family is blessed in many ways; but that doesn't mean that even we have tons of expendable cash for respite, special needs camps, adaptive equipment, etc. (oh, and private autism schools at $76k/year!)
So...we have another option that sounds rosy on the surface (which means I need to ask other parents who have been there, done that about it); Medi-cal. M has enough of the criteria to qualify for this benefit, which would act as a secondary health insurance in the case that our provider through the other half's employer didn't cover something. When applying for Medi-cal, you do not have to provide your W-2 information. Once accepted, your child is what they call 'institutionally deemed.' Why the hell they have to call it something that has such a negative connotation, I can't possibly understand. It sounds like he will become a warden of the state, or that I might lose some of my parental rights. The social worker assured me that this was not so. So if there aren't any loopholes that I'm missing, we will be applying for Medi-cal, which will then allow us get the full benefit (no cost sharing whatsoever) of the regional center's services that M qualifies for. Ahh...but wouldn't it be nice if this, too, could be done in the aforementioned 45 days?? HAHAHA! That would be too freaking easy, people...this is the state of California for pete's sake! It takes three months to qualify for medi-cal and then I can start said services. If they tell me that it's another 45 days on top of that to start, I may have to bite someone. (which may then get me some services as well!)
The other messed up thing is that once you're in the medi-cal system, you have to reapply every single year. And what is worse, the social worker said that much of the time they 'forget' to send you the application, so you have to remember what time of year you first applied. Oh my gosh, shoot me now...I can't even remember if I took my vitamins each day!
So we are getting somewhere, and yet nowhere at all, it would seem. By the time we find out we can go to the school we want to, or start the services we are entitled to (and I don't take entitlement lightly, mind you) we'll probably find out we're being transferred. Oi vey!

Too Freaking Sweet

Overheard today as little brother spoke to big brother:

'Use your fork, M! Look, M...you did it! Good boy, M!'

And later:

'You went potty, M! I am sooooo proud of you!'


Freaking adorable.

Spare Some Wishes?

Tomorrow is the meeting that the director of the school I want M to go to (but not at $76k/year!) has with the school's founders. I haven't been able to stop focusing on this day approaching, so I sent an email just to make sure she hadn't forgotten about us! Here is my email:

Thanks again for meeting my little guy two weeks ago. I
> appreciated your time and loved that he connected with you
> so quickly!
>
> I've already unabashedly expressed my feelings of
> desperation in finding a way for M to be able to attend
> your school, so you probably aren't surprised that
> I've been chomping at the bit about your meeting with
> the founders tomorrow :)
>
> My husband and I are ready to move closer if things work
> out, but regardless, I am totally prepared to drive the 50
> miles as long as I need to.
>
> I've got a few strong forces around the U.S. lighting
> candles for us tomorrow in hopes that something works
> out-ha!
>
> Thank you for keeping M in mind and for putting up with
> his persistent Mom!

And here is the response I received soon after:

To tell you the truth, I haven't STOPPED thinking about M :0) And I appreciate your tenacity - more mom's should be like you. Keep at me!! I'll keep you posted about the results of the meeting. Hang in there and enjoy the weekend. I'll speak with you soon.


I hope I haven't jinxed myself by posting this here, but her response filled me with so much hope and excitement. Please, please let it work out!!

Silence

I can remember a time not too long ago when I didn't particularly like the quiet. Sure, I loved to read a book in bed, take a nap in a hammock, watch a sunset with a glass of wine; but those times weren't essential to my being.

Now, I long for silence. I long for a space in time that lasts more than two seconds, where no sound permeates by eardrums.

M has started this verbal stimming thing that is the stuff made to put Mamas in straight jackets. I am almost tempted to record it so I can post it here for you to listen to. It is this high-pitched, head voice, sort of sound. There are no real words used; just kind of a hum made while his mouth is opened as if he were going to form words. Yesterday was his first day back to school after Spring break, so his sing-song was on FULL FORCE when he got home. The other half is away on business, so I am currently flying this plane solo. Oh, and did I mention it was frakking hot here yesterday? When you live in a cool, coastal climate there isn't much need for air conditioning, except for a few days here and there. It was probably nearing 90 degrees inside our house yesterday. That paired with the sing-song was just about enough to do a girl in.

Sometimes I'm able to sort of laugh at the sing-song and even join in, which is kind of funny. No-go yesterday. Nothing was funny. Not one tiny iota of funny. I even tried relaxing with a People magazine and a cold glass of chardonnay while the boys played in the backyard. M hopped, fluttered, and paced the yard the entire time...sing-songing all the while. The phrase, 'they're coming to take me away!' kept dancing through my head.

The pets were driving me wonky too. The dogs are shedding buckets, the cats keep getting on my counters, and well, basically I just needed a break from it all.
I finally got both boys in bed (though the singing could still be heard for an hour more through M's door), and I took a much-needed, cool shower. I don't think I've enjoyed a cold shower as much before in my entire life! I put on my flowy, white, cotton nightgown...the one that totally looks like a cross between something my mother would wear and something Laura Ingalls would wear. (I know, hot right?!)
I went upstairs to my glass of wine and sighed...ahh. Silence at last!

And then what should happen?? Well, B decided it was too hot to sleep, of course. After some unsuccessful snuggling I realized it was futile. He was staying up as long as I was staying up...or longer. We both finally fell into a fitful sleep around midnight. We were all surprisingly chipper this morning after it all. I pick M up from school in a few hours and I'm sure it will all start over again.

Funny...I'm sort of missing the chewing of couches, cords and what not. (well, not really missing them) It seems like when one behavior is replaced by another, the behavior seems to drive me a tiny bit more insane. Just think what it's going to be like when he's a teenager! I'm going to finally complete my transformation into Janis Joplin, complete with a fifth of southern comfort in hand. Oh, but I'll be able to karaoke 'Me and Bobby McGee' better than ever, huh? I'll be that 'poor woman whose children drove her to become an alcoholic, karaoke-singing, hippie.'

It's sad, really. (And yes, I am fully aware that I'm closer to that description than not!)


(That's M and I dressed as 'peace and carrots' when he was nearly three months old)

One Is Directly Proportionate To The Other

(Or something like that!)

One thing I have noticed over the past couple of years is that when M is happy and thriving, we ALL are happy and thriving. It is a blessing and a curse to live by this rule.
The past two days have been a blessing. M was more cooperative than he had been the past couple of weeks. He was using more expressive language, which always delights us to no end. The light was on and he was home!

In the quest to figure out children like M, it is often advised to note things in a journal. I tried this for awhile last Fall when I was reintroducing his supplements. I was neurotic about making sure I wrote down cryptic words that only I could understand. Have I looked at that journal recently? Nope. I came to realize that regardless of what supplements I was adding and their possible effects on my little guy, there were a zillion other forces in play that I may not have been aware of that might have been doing more (or less) for him than anything I was putting into his body.

So when I think about what could have made the last two days a bit better than the last two weeks or even two months, there are a ton of possibilities. I increased the amount of GABA from 500 mg, twice daily to 1000 mg, twice daily. (GABA is something our brains produce naturally to calm ourselves) I stopped giving him the folic acid supplement that he supposedly needs to help process the b-12 in his body as I have been told that this supplement can cause hyperactivity in some kids. He was a lot less snotty the past couple of days than he'd previously been. The weather was a lot nicer the past two days, so we spent most of both days outside.
By being outside, M was away from the obsessive comfort zone that is our living room. (It has been an odd phenomena living in this house...I cannot keep the boy from immediately high-tailing it up the stairs to our living area for some reason. Is it the yellow walls? Is it the giant tv we now have hanging on our wall?)
I spent yesterday at a friend's home. We drank coffee and chatted on her glorious deck in the redwoods as the children played contentedly outside for hours. I was happy.

I am sure that all of these things played some part in making M feel safer, calmer, happier with the world around him; but to try and replicate this scenario day after day seems nearly impossible to me. I wish that it didn't seem so impossible, but it does. The reality of two fun days hit me this morning when I woke up to two inches of dog hair all over my floors, (and countertops, thank you aging kitty cats who no longer give a shit when I tell you not to go on them), clothes strewn everywhere, wet laundry still sitting in the washing machine, and a sink full of dishes.

Where is that staff of free help when I need them?!

I realize in writing this that the same can be said of parenting B, who does not have special needs, but does have really rough two-year-old days that can make me equally crazy. I guess it's just that at the end of a bad day I know that B is okay. When M has a bad day(s), I can't help but worry that it is another step backward in his development. After this past year, he can't afford anymore steps backward because the top of the stairs is becoming harder and harder to see.

I am having difficulty wrapping up this post. I guess like all things on this journey, we just have to take it one day at a time and relish those good days so that they may carry us through the ones that aren't so good.

Holy Whine, Batman!

Mr. B woke up particularly cranky yesterday. It was a day full of orders and gripes. At one point I suggested that a little time to himself (also know as 'time out') might be a good idea. He kicked and screamed the whole way downstairs, but soon quieted. About 15 minutes later I heard him knocking on the door yelling, 'Mommy!! Let. Me. OUT!' He came out looking like this:



How in the world can you be mad after that?

One Year

Today we have been living in this house for one year. I can't refer to it as 'home' because after one year, it still does not feel like home. I took almost all of our personal photos down two months ago in anticipation of showing this house; in hopes that someone else would want to make it their home. But clearly now, that is not meant to be for at least a little while. Damned economy! I know I should unpack the picture frames, but I guess there is still that part of me that hopes someone will magically come along and want to buy our house...perhaps someone who loved it back when it was on the market just over one year ago? If only, right? But one can dream...

I put a lot of weight into how a house makes me feel. I think that's part of why the other half and I have moved around so much. You just can't really know a place until you've lived in it. It's hard to have insight into all the things that are going to piss you off royally once you've moved in. Well, you can, but if you allow the 'oohs and ahhs' to take precedence over the rational, practical stuff that isn't as much fun to get yourself emotionally tied to, you find yourself in a spot that doesn't suit you after the brief affair with the house ends.

I am very lucky to live in this house. I am lucky to see the mighty Pacific out almost every single window. I am lucky to watch the deer roaming in the open space behind us, and to listen to the owls at dusk. And yet, I think that if this house had felt more like a home this past year; and if this house hadn't been so difficult for all of us to maneuver; things would have been a lot less stressful on our family.

Our house is built up into a hillside; an inverted floor plan with the kitchen and living room on the top level. There are something like 55 steps from the garage to the top floor. Our bedrooms our one floor below the kitchen, as is the door that leads to the back yard. I have to go down a flight of stairs, past the kids' rooms and through their bathroom just to let my dogs outside. And once we've accomplished that, I have to stand out there while they pee in the open space preserve since the fenced-in-area of our property does not have any grass. Yes, I realize how whiny this sounds. But when you're patience is stretched already, the last thing you want to do is stand outside five times a day to let your aging animals do their business. And don't get me started on how it is when Hank takes a runner, or Sydney uses her newly acquired deafness to conveniently keep walking back into the preserve without looking back at me.

Lots of people fantasize about a house like ours...the other half and I now fantasize about a small, ranch-style house with no stairs! Oh, the grass is always greener, isn't it?!

I sometimes feel bad cursing this beautiful house. As though it has a soul that I am marring with my words. (does it?) There aren't many things that I'd do over in this life, but this house is one thing that I absolutely would if given the chance.

The other half thinks it will be another year before we will be able to make a change in our living situation. Like my newest mantra, 'M WILL go to the private school I want him to go to', I think I'll add to my plea, 'We WILL sell this house without losing our asses soon!'

Yes, one can dream!

Disappointment & An Ounce Of Hope

Sorry for not updating you all on yesterday's meeting before now. Thanks to everyone who wished me well both online and off.
Unfortunately, about 10 minutes into the 2 1/2 hour meeting, I was well aware that they were setting me up for the grand finale: They think the current placement, along with a bit more speech, occupational, and behavioral therapies added in, is a free and appropriate education for my little guy.

I respect and like each of the people that was in the room for this meeting. I understand that it is not their job to just 'give out' alternative placements to students, especially with all of the budget cuts that have severely impaired our education system. I also realize that sometimes people don't necessarily speak up for the best needs of a child even if they *might* feel differently from what they say on the record. It is unfortunate, but it is what it is.

There was quite a bit of talk about M's progress with all of his goals. Just two weeks ago I had a parent-teacher meeting with his special day teacher who showed me all of her personal goals that she'd set for him one month into this school year. She told me quite candidly, (but in a way that I appreciated), that M was likely not going to achieve any of his goals by the end of the school year. And then yesterday she and the others present went on and on about how great he was doing and how far he'd come from the beginning of the year. I know that he did make progress in occupational therapy...he is absolutely stronger in his core than he was before, and he can now pedal a tricycle for a few feet independently. And I also know that he made "progress" in areas of speech if you consider reacquiring a couple of skills, like saying 'hi' and 'bye' that he had lost since moving a year ago, as real, measurable progress that should be the main reason for thinking that you are providing an appropriate education for my son.

Listen, I totally get that progress is progress. I just wish all of the other stuff could be taken into account along with it. Why does my child get agitated and resist going into school EVERY DAY? I don't care that he snaps out of it as soon as he gets into the classroom. How is it appropriate for a child with autism to have THREE different one on one aides throughout the day, along with seeing three different teachers (two special day teachers and one regular kinder teacher), and then four different therapists. (occupational, speech, behavioral, adaptive physical education) Let's add to that the fact that his portable building is at the farthest point on the campus and he is constantly being shuttled via the outdoors to rooms for various therapies, other classrooms, bathrooms, lunch room, playground, etc. And then let's add on all of the visual and audible stimuli around him. These classrooms are small, jam packed with supplies, and have walls plastered with maps, artwork, etc. that wouldn't phase you or I. Their rebuttal to my concerns about the campus environment? They put up fabric barriers around his desk when they are doing one on one work to help block out noise and visuals. In regards to having to walk all over the place during the day, they said that he is such a compliant, happy little guy, and doesn't have any issues going from place to place. I believe that he is compliant and happy; but that is simply because that is the child he is. However, I know that if you talk to any autism specialist, they would tell you that this many transitions and changes throughout the day is just not good for him.
I held it together really well for the first two hours, but toward the end when the pit in my stomach had grown into a cantaloupe, I did tear up a bit. I told them that I know that they all care very much about M, but to please not confuse his compliance and mild mannerisms as everything being okay and as progress. I mentioned my sincere concern that he is flying under the radar because he is not disruptive to the classroom, or a behavioral threat. I pleaded with them to take note of the potential that I see in him if only he had a true, autism-specific education.
I could go on and on about all of this, but I won't. I did not sign the paperwork and will be writing a letter saying that it is not okay with me and that I will need to look for other options. We'll see what happens then. I'm not up for a legal battle, nor do we have the funds to go that route. Although I expected it to turn out this way, there was a part of me that hoped they'd see what I see and fess up to it. Parents of other children in this class have told me that it is so obvious he needs something different...it's just a shame that money and bureaucracy fog the eyes of those who could make that happen for him.

On a positive note, I took M and B to the school I love that is 50 miles south of my home. This was my third visit there, but M's first to meet the director so she could see if he'd even be an appropriate fit for the classroom. As expected, she thinks that he would be. She was so smitten with my cute little guy, and he with her. It's amazing to see a child interact with someone who really gets them. M gets like this with his therapists, but I haven't really seen him get like this with his aides or teachers. Anyhow, though the grant money the school had hoped to have access to won't be available for two years, the director is going to speak with the school founders later this month about M to see if they can work out something for him to be able to go there. I offered to barter my services to help them in their office or with fund raising--that's how desperate I am! The director laughed and told me that she didn't want me to become an indentured servant to my son. Maybe that isn't ideal, but at this point, I'd do it if it meant a better place for him to learn and be happy.

This was quite rambled...I'm having trouble focusing this week with all that's going on. Next stop: Monday's genetics appointment. Stay tuned...

The Ties That Bind Us

I recently posted a request for information on assisted technology devices on one of the autism support boards I frequent. M has really been enjoying the touch screen at his school, and my mother-in-law has been kind enough to offer to pay for one for him.
One woman responded that her daughter had done really well with a Microsoft Easyball mouse device, and that she was happy to send it to us from Ohio. I offered to pay her for shipping at least, but she gladly paid this forward to us for free; and I agreed to do the same once we (hopefully) no longer need it.
It arrived in the mail yesterday, but the roller ball wasn't the best thing in the box; a photo of this woman's children was.
I wanted to share the note that she wrote on the back of it:

C, 9 1/2 and her big brother, C, 13. (Her big brother was lovingly holding down his sister's hands in the photo...such a tale tell sign of autism that I now notice in my own photos with M and other photos of children with this disease)

C was fine until her 18 mos. vaccines triggered autism. She has neuro, gut and immune problems since. She has great receptive language, but still remains non-verbal. She communicates with a few signs and a Tango device. She has had very bad aggression until diagnosed with ulcerative colitis. The pentasa for colitis has helped tremendously.
The only payment I ask for, Debbie, is to please keep us in your prayers.
With love,
A

I emailed her today to let her know her package had arrived and that I would be putting her kids' photo in M's memory box. I also sent her a photo of us that she said she would print out and keep as well.

We both agreed that it would have been a lot nicer to meet people through sports or dance classes, but that the connections we are able to form through meeting parents of other children with autism has been one of the best gifts autism has given.

And Again She Reappers!

Man...I do NOT know what my deal is. I've got a full-on case of unmotivation. (yes, that is a new word I have created just for you, fine readers)
The first two weeks of April are going to be big. Well, at least I'm hoping that they are. The amount of butterflies in my stomach better amount to something positive!
Yesterday we (I) met with a special education advocate. Advocates are people who know the wacky laws better than I do that our states have in place to try and confuse the hell out of parents in hopes of scaring them enough to not ask for appropriate education plans for their children. This particular advocate is from a local non-profit; which means that she is assisting me with her knowledge and support for free. This is a good thing since the other half had to take a forced, unpaid week off of work last week, and will have to do it again in the second quarter. (Along with the rest of his company...and hey, it's better than losing a job!) Most advocates, from my understanding, cost about $200/hr. And don't get me started on thinking about what a lawyer would end up costing us if the school decides to file due process against us. The advocate warned me that with all of the budget woes, she is hearing more and more about districts waiving mediation and filing due process against the families. She said it is just a scare tactic, but you know what? I'd definitely be scared if they did that to us! I am totally leery of our legal system and the people that use it as a means to get what they want, no matter how unethical it may be. A little septic system issue and the sale of our last house left those marks on me, unfortunately.
Anyhow, I have digressed....the advocate came to meet with me in preparation for my meeting with the school district this coming Wednesday afternoon. If you're so inclined, around 3pm Pacific time on April 8th, go ahead and say a little prayer, send me some fairy dust, do a dance to the education gods, or whatever, in our honor. I could use it! I am very hopeful that the outcome of the meeting is the district paying for a private school for M. I feel almost desperate about how very much we/he needs this.
The day afterward I am going to take M to meet the director of the Creekside School. This is the small school 55 miles from my home that I absolutely love. It is by far my first choice, but not far enough along in the accreditation process to be covered by school districts. I've bugged the director enough for one of her new scholarships that she has agreed to meet M to see if he'd even be a good fit for the classroom. (I have no doubt that he would) If the stars aligned and I was fortunate enough to have the district pay for a school closer to home AND Creekside offered M a scholarship, I'd say I'd have a nice little dilemma on my hands. One can hope...

Then on the 13th we have a much-anticipated appointment with Stanford's pediatric genetics team. I'm not sure what exactly I think this appointment is going to yield for us. I mean, if something science is currently able to detect is in fact detected, what will it change? I am not sure, but I think it will have an impact in some way. I am very eager for us to get more answers. My ongoing quest to research and learn has hit a stalemate in some ways. Perhaps with more information I'll be able to learn about new treatments that can help M? Who knows...

So share some good mojo with our family over the next two weeks if you can spare it.