Thursday, December 31, 2009

Humor In Everything

We parents of children with autism have to become our own types of comedians. I've made a few jokes to non-autism parents and found even more humor in their mixed reactions...it's totally not intentional to make you squirm with one of my off-color remarks, I swear!! So thank you to those of you who are able to chuckle along with me during these times. If I don't make jokes, well, then I've lost even more of myself than I already have.

And so you will understand why I found it really freaking funny that on Monday, hours after writing my post where I inaccurately told you that M had not defecated in his pants in two years and then even knocked on some wood so as to not tempt the gods of poo to swarm down on me. In terms of the inaccuracy of my statement, I had forgotten a particularly awful, in-pants poo last summer when we did a little home test to see if M could tolerate larger amounts of gluten. The answer was a very foamy and stinky, 'hell, no.' In-home experiments aside, however, M had not done that in quite some time. Until, of course, I went and freaking bragged about him not doing it. Why, oh why, did I have to go and do that?

I was lucky to have some me time Monday night where I met a hometown friend also living in the Bay Area for an amazing dinner. When I opened the door after returning home, I was hit with the stench of a thousand poos wafting from my bathroom around the corner. There, the other half was washing M off in the shower as a really disgusting pair of jammy pants lay before me on the floor. (He's never been the best at multitasking, that one) So before I could even get out of my cute sweater and boots that I rarely get to wear anymore, I was in poo-cleanup-mode and off to the laundry room. We got through it. We always do...

And then the next night, we decided on the spur of the moment to join a friend and her son at the local sushi joint. We haven't been doing quite as many dinners out as we once did with M's new found disdain for all things public, but we wanted to give it a go since the boys love sushi. Fortunately, we sat in one of those tables with mats on the floor...or else the other restaurant patrons would have been regaled with a show of gushing pee flowing to the floor from M's chair.
But since he was already on the floor and didn't give two hoots about being soaking wet...and because we'd just ordered our sake and beer...we just shrugged our shoulders and went on with dinner the best we could. We have to get past these sorts of hiccups...we can no longer be slaves to all things M. That sounds harsh and selfish, and trust me it does not apply to all situations and we most certainly always put M's well-being first and foremost; but because he was still happy and not concerned, we had to be the same. We were having a lovely time after all, and dammit, we deserve those too :)

And don't worry...I made sure to get some paper towels and some hand sanitizer to properly clean the tatami mat he sat on. I haven't lost all of my good manners...yet.

Happy New Year to all of you! May 2009 suck it along with most of the rest of the decade. And 2010...I am putting alot of faith in you, so don't let me down now, okay?

Monday, December 28, 2009

Christmas

We decided to take a last-minute trip to Tahoe for the holiday. We found a beautiful house that had all the comforts of home; minus the tree, of course. B was amazed at the snow which stood two feet deep on all parts of the property. He liked it until it went inside his ill-equipped rain boots, soaking both pairs of socks he wore and making him done, done, done with the snow. RIGHT.THEN!
I usually love renting homes in beautiful places like this, but for some reason I just could not get myself into the groove of this one, no matter how lovely and comfortable it was. I couldn't relax. I didn't sleep well. I didn't sit and read my book as planned. It was as though three days came and went in a flash that left me only with the rushed feeling of having to pack up the car and come home to mounds and mounds of laundry. I'm not quite sure what my deal was, but I am happy that at least B keeps saying he had a great time at the 'vacation house.'
M has been a bit tough this past week, and I am certain that played the largest part in my apathy toward our getaway. He has been physically hurting us several to many times a day. The other half received three cuts on his face during those three days, and I am marked with tiny fingernail-shaped scabs on my hands and wrists. He has become a master of using his nails to pinch and hurt...the same nails that scratch on walls and won't allow themselves to be cut more than two at one sitting. So needless to say, they are jagged and can really hurt. But the cuts really don't hurt more than our feelings do. How can your own child lash out at you continuously like that? Doesn't he love us? Well, the answer is, of course he does. We realize that he is beyond frustrated at not being able to communicate his needs or how he is feeling and it's human nature to lash out at those you are closest to. But nonetheless, when I see the clenched jaw and hear the.noise I can't help but flinch and try to run away. It is also human nature to not want to be hurt by someone, even if that someone is your beloved six-year-old child.
On the plus side, however, we were really pleased with how much he is trying to talk to us since school break began. You can really tell he is making desperate attempts to find words to tell us what he wants. Another plus that at first seemed like a negative was that we believe he was really and truly excited about the prospect of Santa Claus visiting us and leaving presents. He has been having great difficulty calming his body to go to sleep lately, but once he finally does he is a heavy sleeper who will sleep until 9 am if allowed. On Christmas Eve we had an even more difficult than usual time getting him to bed, and once he finally did he was then awake and wandering at 4:30 am, and then up for good at 7 am. I think he knew what was up and that made me feel a bit reassured.
I also am coming to the conclusion that M is suffering from gut pain. His poor belly is so distended and on days when he seems to be more irritable than normal, his belly can be almost rock-hard in spots. Remember when I mentioned PANDAS and the strep titer? Well, we ran a whole slew of tests and found that his strep titers were actually normal. This was surprising since he very clearly responds well to antibiotics. The doctor was hesitant to prescribe more of them, but felt we needed to do another trial to see if we got another good response. We just completed two weeks and though the tantrums and aggression were not as under control as they were in November, his teachers definitely reported that he was more 'on.' Another interesting thing to note was that when not on antibiotics, he was/is having potty accidents. It is incredibly frustrating. Fortunately for us, he has not defecated in his pants in over two years (knocking on wood) and only urinated. But despite having us put him on the potty over and over, he'll just pee his pants and sit in it as though he does not even notice or care. It's bizarre.
The other test we ran also showed concern with his gut. M has been supplemented with vitamins like zinc, magnesium, calcium, etc. for two years. Oddly, these were all the things that were out of range, low, on the blood tests. He is also quite low on iron, which we just began supplementing yesterday. What does this tell us? It tells us that for some reason he is not absorbing nutrients properly. There are theories about children with autism having a condition called 'autistic enterocolitis.' This term was coined by the controversial Dr. Andrew Wakefield of Thoughtful House where M was seen until we recently decided to find a local biomedical doctor. There are many people who are in disagreement about this conditions existence. I, however, have met way too many people who have children on the spectrum with similar digestive problems to dismiss this as a very real possibility. So I have contacted Thoughtful House to begin the process of seeing Dr. Arthur Krigsman who is considered the best pediatric gastroenterologist in the autism field. I have no idea when we will get back to Austin to see Dr. Krigsman, but I am hopeful that he will find something that is treatable to help get M back on track.
My other plan of attack is to once and for all build up my kahunas to finally pull M out of this awful school. I just canNOT let the teacher saying to me 'Maybe this is just who M is' go and I realize that these people are only continuing to further damage my child. Might sound extreme, but I fully believe that they are. Once I figure out the legalities of it all (do I have to register as a homeschooler, etc.) I will withdraw him. I am very hopeful my experiment will prove beneficial.

This was an extremely rambling post, and for those of you who stuck with it, thanks!
Lots on my mind, I suppose, and I just needed to spew it forth here :)

Wednesday, December 16, 2009

Heartfelt



When the rain is blowing in your face
And the whole world is on your case
I could offer you a warm embrace
To make you feel my love


When the evening shadows and the stars appear
And there is no one there to dry your tears
I could hold you for a million years
To make you feel my love

I know you haven't made your mind up yet
But I would never do you wrong
I've known it from the moment that we met
No doubt in my mind where you belong



I'd go hungry, I'd go black and blue
I'd go crawling down the avenue
There ain't nothing that I wouldn't do
To make you feel my love



The storms are raging on the rollin' sea
Down on the highway of regret
The winds of change are blowing wild and free
But you ain't seen nothing like me yet


I could make you happy, make your dreams come true
I know there's nothing that I wouldn't do
Go to the ends of the earth for you
To make you feel my love

To make you feel my love








-Written by Bob Dylan

Saturday, December 12, 2009

Turning Tides

I keep telling people that 2010 is going to be my year.  After telling 2008 to 'suck it,' and knowing that I'll be doing the same come New Year's Eve 2009, I'm probably proclaiming 2010 as the Year of Deb partly because I believe it has to be, and partly because I'm not quite sure what I'll do if it isn't!

My parents recently visited for a.whole.week. over the Thanksgiving holiday.  I love my parents very much and feel close to them in many ways, but they are not the people I feel most comfortable showing the raw and real truth of our day to day living.  There aren't many people we can comfortably show that to, but with my parents it's even more difficult.  Part of this is because I end up getting a little stressed because the other half isn't the biggest fan of my parents; a thing that I understand in some ways, but don't at all understand in others...I mean, they're MY parents for frack's sake.  If you love me, please tolerate them, no?
But the other part is that  my parents have this unspoken air of superiority in their handling of all matters, be they financial, family, etc.  They don't have to spell out these feelings to know that they are there.  My mother has said to me (and you'll probably gasp a bit when you read this) 'You don't need to have another child.  You've got a lot to handle already.'  They said this about my sister way back when as well, and though I wholeheartedly agree, I now realize that that is just nobody's place to say that but mine or my sister's, or anyone else's.  And though she said it from a place of love, the delivery just never seems to settle right with me. 

So when both my parents expressed several times (again, from their own type of loving place) that 'we have our hands really full,' or other comments like how difficult it is to dress M and how they don't know how I do it, etc. I started to realize what all of 'this' must look like to them, and how I don't really want other people to see the real 'this' anymore.  I don't mean that I'm closing my open book attitude on my life.  I am not a rose colored glasses person, so why artificially paint something to appear that way?  But there are just some people in my life that I think I'd rather not have believing that things are so horrible...because they aren't.  Not really anyway. 

So this is why I feel the tide is turning...or at least that it must.  In trying to soften the things my parents believe they saw to be so difficult, I told my Mom that I was really starting to learn that you can't be handed a situation like this and not try to find out the meaning of it all; to figure out what your purpose is along this journey.  So this is what I am trying to do now...and I'm trying to find out the best way to achieve this purpose.  I don't want to live my life as a victim of circumstance.  I think I have done that for the past couple of years without really realizing that, yes, this did happen to me, but it happens for M times 100 each and every moment of his life. 
  
I don't type all this out because I believe I'm going to all of a sudden not have any stress in my life.  I don't believe that I won't continue to lose my shit just a tiny bit each time during the day that M yells at me, digs his nails into my arms, and goes limp-legged making my back ache just a little bit more than it already did.  No, these are the truths of my existence that I cannot hide.

So be gentle with me...don't be too hard on me when I slip up and am not positive.  Tides don't turn overnight, you know.  But knowing that they need to is at least one step in the right direction.  Hopefully my steps will be large, comfortable strides rather than tentative baby ones.  One can hope, right?

Wednesday, December 9, 2009

Autism Prevalence

Thoughtful House (in Austin, TX) just released updated data for 2008-2009.  You can access graphs for all of the states and outlying areas here.

This data is based upon reports of students receiving special education services due to a diagnosis of autism.
Please keep in mind that these shocking increases do not include students who are home schooled, in private placements, too high functioning to receive special education services, or not receiving the services they need at all.

The most significant note was 1 in 67 eight-year-olds receiving special ed. services for autism in the state of Minnesota.  I have heard that Minnesota is a leader in terms of providing appropriate services for our kids, so if you consider that even this number is likely underrepresented, well, we should all be completely appalled. 

I cannot tell you how many families I know in the state of California whose children seem to clearly be impaired by autism and yet are told that they do not qualify for services under that label. (or any other label for that matter, unfortunately)  So consider just how high the numbers might really be in your state.

Autism - Statistics, Incidence, Prevalence, Rates

I thought this information might be interesting to some of you.

Thoughtful House (in Austin, TX) just released updated data for each state and outlying areas based upon the number of children currently receiving special education services due to a diagnosis of autism. Please keep in mind that these shocking numbers are understated since those who are home schooled, in private schools, too high functioning to receive special education services, or not receiving the appropriate services at all, are not counted.

Autism - Statistics, Incidence, Prevalence, Rates

Sunday, December 6, 2009

Navigating The System

I'm over at Hopeful Parents today.  Please stop by and read some of the amazing stories other parents share on this great site!

Saturday, December 5, 2009

A Time To Reflect...

...on things like snot, fevers, regressive toilet training, parents, and of course...turkeys.

Yes, it has been nearly one month since I last posted.  Where has the time gone?  I have noticed that many of the blogs I follow are also a bit sparse in their posts.  Is it just the holiday season that makes us deviate from our norm, or are you all, like me, dealing with back to back...to back...illnesses and various other craptities, (wow, that word didn't get corrected-hmmm?), and haven't had the brain power to come up with sentences that make a lick of sense to anyone but yourself?

The other half traveled for business the better part of three weeks, during which time M, and subsequently I, came down with strep. Yippee. That ailment never seemed to really right itself and turned into a virus-y, cold thing that all four of us got. Just when I thought we were on the mend, my parents came to visit from Texas and my Dad was quite ill with a bad sinus/upper respiratory infection. We spent Thanksgiving morning at the local ER to fix him up.

I had to get Dad better because that weekend the other half and I had 48 hours of respite during which we drove south to Paso Robles and the Justin vineyard & winery. We stayed in a lovely room there where we felt comfortable enough to not do much of anything.


We took an inadvertently off-road drive in the Prius to the fabulous little town of Cambria.
And out of the 160 wineries in this region, we only tasted at two, Treana and Oso Libre. We went back to our little villa and had in-room massages and then promptly put on pjs, ordered pizza, and fell asleep by 10 pm. It wasn't the romantic, reconnecting trip I'd hoped for, but who feels romantic when they can barely hear for the snot filling up their sinus passages? And I brought flannel jammies, so the other half had to know right off the bat it wasn't going to be that kind of vacation. Ha! But it was really and truly an absolute luxury to sit around in those flannel jammies and read a really good book without little people constantly asking for my attention. Just what the doctor ordered, I'd say!

So now we are one week back from our trip and three of us are still (again?) sick. We are running quite the racket on doctor visit and prescription co-pays.



And M had a rough week at school which should have been our biggest clue that he'd end up with a raging fever last night. But we're hanging in there regardless and plan on making an attempt at some Christmas cheer today.

Here's hoping you and yours are surviving the holidays and all of the germs that seem to come with them!

Sunday, November 8, 2009

Thankful Sunday

Yeah, yeah.  I realize I've been a bit lax about doing this week to week.  But it's the thought that counts, right?

Today I have been solo parenting.  And I am T-I-R-E-D.  The other half was gone three days out of last week as well.  He came home for just over 24 hours only to leave at the buttcrack of dawn again this morning.  It's not his fault, of course, but damn, it gets tiring at times. 

Today I tried really hard to keep us busy and having fun.  We went for a hike and M just would not cooperate.  I know it sounds stupid, but I really believe he sometimes just doesn't want the rest of us to have an enjoyable time.  (I type that, and I fear the backlash.  There is a misnomer that kids with autism are stubborn when that isn't actually the truth.  But in some cases with M, I have to tell you...I think he really is just being stubborn!!)  B and I never went so far ahead of him as to be out of sight, but I did finally tell him that stopping and waiting for me to physically grab his hand and pull him up the trail was no longer an option.  B was so worried saying, "Mama, you can't leave M!"  I kept reassuring him that M would never be out of our sight, and sure enough, M would always eventually catch up with us.  It wasn't much fun, but we did it.
We then played in the backyard with our neighbors, and then we spent about an hour swimming in the hot tub.  By the end of it, M was digging his fingernails into me in his clenched jaw way, and I was ready to get the hell inside and into some comfy jammies with a glass of wine in my mouth hand.

I was clearly not in a pleasant mood by that point, though I did my darnedest to just stay separate from the boys so as to not show it too much.  But my littlest man--the one who seems to live inside my brain at times--came in and said, 'Mama, I want to show you something outside.  Grab my hand, and I'll show you.'  So off we went to our back patio, the one I don't sit on often enough.  The one with that spectacular view of miles and miles of Pacific ocean.  'Mom, I want to show you the beautiful sunset.  Isn't it pretty?' 

He melts my heart, this one.  He can drive me up the wall as well, but he always knows how to work his way back into my good graces. 

'Mama,' he said.  'Are you still cranky or are you happy now?'

'I am so happy, B.  You're right.  That was beautiful.  Thank you.'

Saturday, November 7, 2009

I'm A Spicy Pickle!


Since I've never actually won a blog award, I am snatching this one up gratefully from Alicia at Welcome To My Planet. 

Alicia got it from Corrie at Just Because My Pickle Talks, which might be the greatest name for a blog about parenting a child with aspberger's I've ever heard! 

But back to Alicia...I came across her through Hopeful Parents and have really been drawn to her writing.  She is thoughtful, witty as hell, and dead-on with her honesty about raising a child with severe special needs.  I always think to myself that she has a way of saying exactly what I am feeling much of the time...but in a more eloquent and touching way.  Give her a read!

Thursday, November 5, 2009

P.A.N.D.A.S.

No, I'm not talking about the cute cuddly bears from China. I'm talking about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci Infections.
Got all that?

This is a rare neurological disease with little research or basis for treatment at present. I've heard this term batted around here and there over the past two years in which we have embarked upon biomedical intervention with M. However, about a year ago, I was no longer just hearing about it on various Internet boards, I was hearing it mentioned by our biomedical doctor himself...in regards to my child. There isn't one certain diagnostic test available for PANDAS, so naturally doctors are going to be a bit hesitant to throw it out there. I did a bit of reading on it, saw where maybe it could apply to M, and didn't give it much more thought. Then on my next phone conference with our biomed. doc back in Texas, it was casually brought up again. Hmm...maybe I should be listening to this? And this time it was brought up after M had become very sick and subsequently B & I were also diagnosed with strep.

Let's backtrack a bit here...

I am likely a strep carrier. I have had it about a zillion freaking times, the last (prior to January's episode) being before I turned 18 when I finally had the disgusting tonsils in my throat removed. I thought I was finally free and clear of the evil strep until getting it again earlier this year. Did I pass on some sort of predisposition to this bacteria to my child? It would seem that is quite possible along with the various other autoimmune conditions that run in my family.

Alright, now we fast forward to this crazy-ass week...

Today we discovered that poor M has strep. I am sincerely concerned that he has been battling this for close to a month! Aside from the unbelievable fatigue he's been experiencing, I've frequently noted to the other half that he has had a raspy voice. But without any fever (until the 104 he hit the past two nights), and with him continuing to have a good appetite, how was I to know? Oh, this is just absolutely one of the hardest things about having a nonverbal child!! You just can't realize unless you live this how nice it is to have your kiddo be able to tell you when something hurts!

We will put him on the standard 10-day antibiotic treatment and I will put money on it that we see great improvements in his behavior beyond even what you'd expect simply from someone finally not feeling ill anymore. This is one of the hallmarks of PANDAS, and something we have been able to attest to with M over the past couple of years...he most definitely gains mental clarity while on antibiotics.

Anyhow, I spoke to the new biomedical doctor we have here who ironically had brought up PANDAS to me just six weeks ago during our consultation. I think we may be very close to putting a label on at least part of what has happened over the past year+ to cause M to go into such a steep decline. We will wait about two weeks from today to do a blood draw to measure his strep titre and go from there.

If you're interested in reading more about this condition, please go to the PANDAS NETWORK.

Those of you who are closest to me and know about the exact changes we have seen in M will likely catch yourselves saying, 'Uh-huh, yep, and totally' to more than a few of the descriptors of symptoms. I know I just did.

And if any of you reading have a child diagnosed with PANDAS, please let me know. I would love to speak with you further.

Wednesday, November 4, 2009

$@%*&!

Man, I got a bit worked up at the end of yesterday's post, didn't I? And you know what? I'm probably even more worked up about it all now!

I'll bet just about every parent of a child with special needs--but more specifically a child with autism--has heard the story of someone they know being told to just accept that their child was never going to progress...never going to amount to much...never say 'I love you.' I know I've heard these stories hundreds of times and have always counted my blessings with the knowledge that there was still *hope* for my child. I've never thought he would be a rocket scientist...I'm not sure I've ever really believed he'd even graduate from school. But I did do think that he has a chance to be a productive member of our society...a person who is liked and looked after...a person who can live happily for the majority of his days without feeling like he needed to have a tantrum in protest of the hard-to-navigate world surrounding him.

His teacher--with her comment that 'maybe this is just who M is'--in a much subtler way told me to accept that he is not going to amount to much and is going to live the rest of his life as a very difficult human being to be around.

You may think I am reading something into this phrase that isn't there, but I assure you I am not. Her intent was not to be hurtful or malicious--this is the only difference between what she said and what I have heard others to have been told. But the message is still the same and I will not accept it. This is NOT our future for M. It is our present, yes; and it really does suck at times, but we will get past it with the help of the right people. I have to keep telling myself that we will find those people and a way to work with them. I have to. I have to. I have to.

Tuesday, November 3, 2009

Fuel

I type this after one of those adrenaline filled hours where M's recently discovered fever spiked to 104 degrees and has now settled at a more comfortable 101.5. A coolish bath and the giving in to motrin seemed to help him immensely. I only wish I hadn't dragged the poor child and his brother to a two+ hour ophthalmology appointment after school today...if only I'd realized that one of the reasons he's been in such a foul mood for over a week now is because of the way he's feeling. But I can't beat myself up over the 'ifs.' When you have a mostly nonverbal child, you just don't always know these things.

So I alluded to how rough things have been for M as of late. The last couple of weeks have been, once again, filled with agitation, hyperactivity, and worst of all, aggression. I have a few bruises and scratches on my arms to prove it. Last Tuesday after a particularly bad day where his teachers remarked on how off he seemed, he came home only to have an explosive bowel movement in his pants (totally unusual), that lead to an hour-long cool bath and the putting on of jammies all before 3 pm. I left him to rest in my bed and went to take a shower for myself and found him zonked out when I was done. He slept until 1:30 am, woke for 30 minutes, and slept again until 7:30 am. There were no other real symptoms. Things did not improve greatly over the next week and both yesterday and today I was met with the grim-looking faces of his aides when I went to pick him up. He's had two more 'really rough days' and 'seems uncomfortable in his own body.' 'He is agitated and aggressive when we ask him to do work.' And all the while I really have no rebuttal other than to say, 'I don't know what the hell is going on.' Because I don't...not for sure anyway. And I'm paranoid of saying something that they could hold against me if we ever have to go to due process...though that keeps looking less and less likely for reasons I'm not going to spell out.

But one thing really has me bothered from today's pickup, and my lack of reaction is really eating at me now too. M's main teacher joined my conversation with the aides, echoing their sentiments and concerns for M. I said to all them that I felt odd when I didn't have reasons for these things and am feeling lost about what to do about them. The teacher--mind you in a very caring manner--said, 'I think this is just who M is now.'

It hit me like a ton of bricks when I discovered M had a raging fever a few hours later. How could I have been so stupid? Of course there is something going on to cause him to act this way lately! Her statement made me realize more than ever just how incapable this staff is of working with my son. Ask M's private therapists. Ask M's teachers from Texas. (B, if you're reading this, back me up!!) M is and has always been an old soul of a boy who has endeared those close to him.

I have said to these people more times than are natural, 'Back when he was in Texas, he could do "x." ' Because he could. And he did because he was understood better and in a classroom that wasn't fucking cluttered from floor to ceiling with academic noise and supplies that meant ZERO to my child. He was in rooms that had organization to them...a place for everything. He had clear picture schedules and labels to help him navigate through his day. This is not the case in his current school and the more I type, the more pissed off I am getting about this.

Something has to change. I can't keep watching this any longer...

Monday, November 2, 2009

Blah, Blah, Blahs

It seems a lot of bloggers I follow are blistless these days. I think about writing almost every day and then a case of the blahs overcomes me and the thought is gone.

This is always a weird time of year for me. The calendar is way too full. The days are getting shorter. In most parts of the country, the weather is finally cooling. Oddly enough here, on the northern California coast, this is the warmest time of year. The 60-70 degree days full of sun and little fog are glorious when you are outside. Not so glorious when you live in a very vertical house on the top of a hill with no air conditioning. So my autumnal need to sort of hibernate and hunker down is all out of whack. I'm yearning to wear sweaters and boots--and in fact can for the first two hours of the day--and then find myself stripping down to summery-ish clothes and wanting to take a nap by early afternoon. There's just not a lot of productivity going on for me right now!

We've also been in a weird place with M for so long that I feel totally whiny reporting our day to day ups and downs here. You never know which end of the teeter totter you're going to sit on when you wake up. And most of the time you end up being the sucker whose sitting across from the kid with that look in his eye, not knowing when-but knowing you will eventually be slammed to the ground with a thud when he decides in a split moment to abandon ship. I told my best friend, L, the other day that I wasn't sure if I was brave or stupid to continue to try and take M with me to new places or to run errands.

This after a very failed attempt at a Mommy/Son breakfast after dropping B off at nursery school. M was in a great mood...doing some great spontaneous labeling of things around us. The restaurant was quiet--only two tables seated besides ours. 'Do you want eggs, M,' I asked. 'Eggs,' he replied enthusiastically. 'Do you want bacon or sausage?' 'Sausage!' 'Do you want fruit?' 'Fruit!' And then when the waitress actually came to take our order all hell broke loose. He shoved the table away from his body hard enough to spill the container of half and half. He slithered to the floor and began to scream--loudly--and then dug his nails into me, pinched my arms, and clenched his jaw in anger as I tried to pick all 54 pounds of his limp weight from the ground without totally losing my shit on him.

I was very lucky this time--as bad as this outburst was (and it was REALLY bad), I was in a bit of a safe zone. The waitress had met us before on better days, and the hostess had seen us around town. They offered compassion and kind words and were ever so patient with me as I brought M to the car and then came back in to wait for our food to go. This is the beauty of living in a smaller town such as the one I live in, and I guess the one thing that makes me feel a bit braver than stupid when I go out into the community. I suppose in a way I'm educating the people I live near by showing them that even though my kid doesn't always have his emotions and behaviors in check, he is not just a badly behaved child. He has AUTISM, as do at least 1 in 100 other children in our world. This is becoming a way of life, folks, and we have to learn to accept and deal with it the best we can. Understanding is the first step. Of course, I say that, and half of the time I feel as though I don't quite understand all of this myself. The behaviors people with autism exhibit are sometimes so far beyond the realm of reason, or completely devoid of common sense, that it IS annoying and difficult to be around. I get this better than anyone because I live with it 24 hours a day! So I guess the message I am trying to send here is to really reach into your hearts and pull out an ounce of compassion not only for the children you see who have autism, but also for their parents. Their patience and mental well being is likely stretched beyond belief, and they--like their children--are trying as hard as they can to keep their shit together in a world that is becoming increasingly difficult to navigate with all of the noises, sights and sounds of those living typically around them.

Thursday, October 22, 2009

Short & Sweet

M just came over to me as I was sitting at my desk. He handed me the Madagascar (or 'Casecar' as he calls it) dvd, looked me in the eye and said, 'thank you.'

Trust me...this is HUGE.

And of course, I had to oblige him because he actually brought something to me (which never happens), and then even asked me for it in the best way he knew how.

This movie makes him wicked anxious. He's buzzing around the room making sounds and then coming back to his spot in front of the tv. By the time we get to the end he will be bouncing a good three feet off of the ottoman. And when it's over...well, there will be a meltdown.

But he asked for it, so who the hell cares?!!!

Thursday, October 15, 2009

Grab A Tissue

It has been a blessing to have met and connected with so many other parents of children with special needs via the Internet. One such friend, Valerie in Australia, wrote the lyrics and put together the montage for the video below.

I admit to doing some of my not-so-pretty sobbing while watching this. Even as a parent of a child with autism, sometimes I am not as empathetic as I should be to M. It is a very difficult thing to try and understand how something as seemingly benign as the wind, or too much noise could send someone into a complete tailspin; but this is what it is like for many people with autism.

I love you, M, and I promise to do better by you; to understand you, to help ease your fears, and to make you feel safe and secure.

Friday, October 9, 2009

O Blogosphere, How Small Thou Art

Today I toured another (yes, quite expensive) private autism school. I got total warm fuzzies at this place and really liked what I saw. It gave me another burst of energy to get 'er done once and for all. The other half and I need to have a sincere come to Jesus about all of this. (again)

But the best part of my meeting today? Toward the end of it, the director was talking about how parents of kids with autism have to adapt to this craziness in the public school world (essentially) and realize this is the new norm. I chuckled and said, 'I actually have a blog called This Is My New Normal.' The teacher sitting next to me said, 'Oh my gosh, that's you? I've read your blog!' We all got a good laugh out of that one and I half-seriously asked if I needed to start censoring myself. I suspect that I am safe with this teacher, though. And, S, if you are reading...it was a pleasure meeting you. Thank you for making me feel less insecure in my thoughts that M's current setting sucks the big one :)

Monday, October 5, 2009

Hopeful Parents!

I'm contributing--however little I may be doing it--at Hopeful Parents today.
Come on over and browse around a bit. There are some really amazing, touching writers over there.

Wednesday, September 30, 2009

Food For Thought

Last week I took M to a new DAN! practice I had heard great things about. We have been patients of Thoughtful House for nearly two years now and I felt that it was time for a little different perspective as well as making the switch from a practice that was back on the mother ship to one that is local. I have great respect for the practitioners and work done at Thoughtful House, but unfortunately after following protocol there, we have not seen much, if any, change in our little guy.

I really liked the doctor I met with yesterday. I think the other half--who was notoriously skeptical of some of the suggestions at Thoughtful House--would have liked him too. It was sort of like Thoughtful House-light, which is probably good for us.

While he had many of the same beliefs as our old doctor, he also had one that sort of left speechless and with a lot to think about. At the end of our 90-minute appointment I finally got around to the current stage of Miles' developmental history; the part where we have an agitated, sometimes aggressive child on our hands. The doctor asked me what my gut told me is the reason for these new traits. I told him I believed it was his displeasure in a not-right-for-him school setting, to which he immediately replied, 'I put a lot of stock in parents' gut feelings. Take him out of school for three weeks and see what happens.'

WHAT?? Take him out? But...then that means that I have to deal with my inadequacies...my lack of patience for starters. Or my inability to teach anyone how to do anything that doesn't come easily to them. I am acutely aware of my parental shortcomings and have overcompensated in areas of research and networking to somewhat make up for them. I'll be honest: I don't entirely know how to be with M 24/7 for longer than a week and I also know how very important things like speech and occupational therapy are for him. My first thoughts on this suggestion were that it could never happen.

But after giving it some thought, I think it could happen. And I think it could be very telling. However, I think since it's taken us 18 months to go down this hill, it is certainly not going to only take three weeks to go back up it. But if he's happier by the end of it when we check back in with this doctor, we may very well have ourselves a clearer answer of whether or not M's school is the root of his problems.

I have decided that in order to make this experiment a success, I need to set up an intensive private occupational and speech therapy schedule; like maybe 2-3 hours worth, three days a week. M always does well with his private therapists. They get him completely and the work seems like play to him. I think this is the only way we can take him out of a school setting without him losing skills and melting down even more.

I still have to get some other ducks in a row before this can happen. I have to figure out the best approach with the school district, and I need to figure out what three or four weeks make the most sense. The pediatrician flat out told me he would write me a letter saying that M was sick. Wow. This guy is serious!

I guess the biggest thing that concerns me is my fear that I am wrong about this school thing. What if I have used this as my go-to excuse for this regression when really I am just unable to see that this is who M was bound to become and I should accept it and move on? This is scary to me as I really believe that a happier child lies within the one I see before me.

I would love your thoughts on this proposed experiment, especially from you readers who have children with special needs.

Monday, September 28, 2009

Thank You & Sleep

I truly appreciate all of the love and support I got on the blog and off...means more to me than you could know.

I thought about updating you all on Saturday after a much-needed, too-long-in-the-making, really freaking refreshing night of sleep. But then, I was afraid to jinx said good night of sleep and decided not to mention it.
Well, apparently the inner workings of my brain have some connection to the jinx gods and told them what I'd been thinking, so the bastards went and screwed up our sleep for the next two nights anyway. Sigh...

M has NOT been sleeping for over a week now. We have no idea what is going on with him. I tried to blame it on starting a new probiotic, but I don't think that is really it. He wakes up every single night (except for that amazing Friday) and comes into our room. After that, it is as though he has restless leg syndrome. I can feel his leg twitch-twitch-twitching next to mine when he is actually laying sort of still. And the rest of the time is spent shifting, sleeping upside down and sideways. Oh, and let's not forget the crying and occasional kicks and jabs at our faces. It's clearly terrible for him, and in turn, terrible for us. We're exhausted and don't know what to do to fix the problem.

Sleep was always our check mark in the positive column. Kids with autism are notoriously poor sleepers, but not our M. Our M fell asleep with little to do and stayed asleep until we woke him for school. On weekends, he could sleep until 9 or 10 am. So this new wrench in his schedule has really thrown us for a loop. I have tried melatonin, which does seem to help him with the actual falling asleep part, but certainly doesn't help with keeping him that way.

Do any of you readers have any advice for us? Have any of you in a similar position experienced this sudden HUGE change in behavior and sleep patterns in your autistic child? M is six and I am wondering if this is some sort of hormonal or growth issue. In other words, I am hoping very much that this is just a phase and will pass quickly.

Pardon me...I am about to fall asleep on my keyboard. Time to set the ol' alarm and attempt to catch a few zzz's before I pick M up from school...

Wednesday, September 23, 2009

Truth

Dear God,

I know we don't talk as much as we used to. I mean, there's that whole me not attending a church thing and questioning organized groups who follow you.
But I really could use your help right now. I am really struggling. My whole family is really struggling. My little guy's emotions are all over the map and my 60:40 rate in favor of successful outings has taken a drastic nosedive to 70:30 NOT in my favor. The rage I feel over his rage is growing to match; a thing I feel enormous guilt over and realize is the absolute worst thing a Mom can offer her sweet child in his time of needing me most. But how does one stop reacting when each and every day...about five or more times a day...she is pinched to the point of bruising; hit, kicked, and addressed with a clenched jaw and a sound like she is about to be attacked? He may only be six, and he may have low muscle tone, but he is strong and he can hurt. And the worst part? When I reread what I have written here, I feel as though I am describing to you someone other than my child. Someone other than the old soul of a boy I know has the capability of being the most endearing, most beautifully enchanting child...the child who you may not understand, but who haunts you and makes you want to understand.

God, I am scared. I feel desperate to fix this, and yet I am not able. I want to blame it on how very unhappy I know he is in his school placement, and yet I am also scared at the possibility that it is bigger than that. That this is his new normal. Have we entered the point of no return? Is he choosing to more autistic and in his world because it is easier than being a part of ours?

And what is worse, God, is that I--the woman who bore this beautiful, confusing boy--am also the one who instills fear in him. I am the one who has started to not tolerate the 20-minute hysterical meltdown when it is not the movie he wants. The one who will put him in his room immediately because I have no more patience for him reaching for his little brother's neck...even when his little brother sometimes quite knowingly provokes him.
I am the one who yells and cries at him, and then lays next to him because he needs me to make him feel safe as he tries to quiet his body long enough to fall asleep.

If your own mother cannot accept your faults, then who can? Oh, the guilt is almost too much for me to bear.

Please, please, God. If you are out there and you are listening, can you help us? It is bad and I need help.
I cannot do this alone.

Respectfully,

Debbie

Thursday, September 17, 2009

I May Be Biased, But I Think It's Pretty Freaking Cute!



B is absolutely LOVING his new nursery school. The poor kid begged to go to school all summer and now he finally has a place to call his own after spending his entire 2.5 years being schlepped to and from M's schools and places for therapy. He attends preschool two days a week for 2.5 hours each time at this fabulous, old-school place right on the beach. It's absolutely perfect for him.

Today, he did a language arts exercise with one of his teachers, Amanda, who he has nicknamed 'Panda.'

Here is what he responded to the question 'What makes you feel...'

Happy? Doing Papers makes me happy! (Papers, he explained to me, was what he called doing this particular activity)

Sad? When I fall down!

Silly? My mouth!

Excited? My Mommy & Daddy go to parties! (I should explain here that we don't really go to many parties...we have been doing lots of pretend play where we act like we are having a birthday party)

Confused? Um...the grass!

Disappointed? Um...that truck right there!

Bored? Um...that....the papers!

Angry? When I falled and screamed at Mommy!

Loved? My Mommy! (Bless you, my sweet boy!)

Scared? Monsters! RAWWR!!


Damn, he's cute...

Sunday, September 13, 2009

Thankful Sunday (Because It's Cheaper Than Therapy!)

Today I am thankful for my village.
Have you read 'The Red Tent?' If not, you should.
We weren't necessarily meant to do all of this parenting alone, you know!

I feel so blessed to have made several amazing friends here...not just the kind that you drink wine with over a good bitch session, but the kind that you drink and bitch with over way more hours than you'd normally spend at someone else's house; hours during which you're perfectly comfortable to help yourself, rummage through their kitchen in search of the perfect serving dish, and have your children run around like banshees while your rear is planted firmly in their kitchen chair-because you don't have to worry that your children are going to dart into a street or take off with a stranger.

I was fortunate enough to have two such days this week and it was fantastic. Both families are quite different; one, a family whose son also has autism, and the other a family with three typical children who all have this fabulous gift of accepting M and all his quirks and still try to include him over and over again. I love that these friends don't care if their homes are spotless when I come over...or that they forgot to cook a vegetable to go with the chicken. I love that they take the initiative to put a borrowed t-shirt on B who arrived wrongly dressed for the hot weather in a long-sleeved shirt and jeans. I love that when M could not handle the movie I suggested we see, they did not feel short changed (even though I did!) and suggested instead we head back to their house to relax. I love that they told me how relaxed they, too, feel just hanging out with us.

It really does take a village. Let us not forget this and always cherish the good friends we have in our lives.

What do you love about your village?

Wednesday, September 9, 2009

Things I Am Currently Stressing Over

Bet you can't wait to hear, huh? Bet you can guess what they are, huh?
(Alright...anyone reading the above with an old-timey, Jimmy Stewartish voice, while mimicking tipping their cigar ashes to the floor? No?? Huh...)

Money: It is freaking expensive to live here. The other half makes a great salary by all accounts and yet we still worry. Ridiculous.

The Real Estate Market: This one ties in nicely with the first. Let it be said that Mama Deb has finally accepted her fate and realizes there will not be a chance to sell--and subsequently move out of--this house until, AT MINIMUM, Spring of 2010. The final realization came last week after learning that a comparable house to ours came absolutely no where near appraising. Damn. Damn. Damn.

Anyone care to take dibs on which one is next....

SCHOOL! Yep, you guessed it. Still stressing about M's school. He did fine during summer school (different teacher, one of the same aides, mostly different kids, different elementary school...hmmm?), but has already shown great displeasure with going to class each day. We don't struggle every single day, but we're only about eight days in and I'd say five of those have been really tough. But what is tougher is hearing that he is very agitated, showing a ton of self-stimulatory behaviors, or easily angered during the school day. And at night we have been dealing with a little guy whose emotions are so out of control that he is starting to show a bit of rage towards mostly me and his little brother. It is both scary, upsetting, and enough to make a person really pissed off. There is only so much being pinched or kicked a Mom can take :(

And finally...

The grand combination of money AND school! Because I have just received a delightful little note from the district saying that though they are pleased to see M back in school this year, they need me to understand that they will not be able to continue serving him without me signing the latest education plan. (These are those IEP things I have previously mentioned. It is not recommended that a parent sign these if they are not in agreement with them. Because these plans have outlined an education that is to be granted in a public elementary school as opposed to the private autism school M needs to be in, I have not signed. I did this fully knowing that we'd come to this point eventually where one of us would be forced to take that legal turn...here we go!) So I am scrambling for advice from some specialists whose opinions I value and I imagine our next move will be to hire an attorney or an advocate. Can I curse here? Because I really want to yell out, 'FUCK.' There. That's better. Thanks.

That is all!

Sunday, September 6, 2009

Hopeful Parents!

I'm contributing over here today.

Come on over, y'all!

Thursday, September 3, 2009

Highs...And Lows

I have been M.I.A. (no, not like the rapper) It's not for lack of subject matter, but perhaps more for lack of energy to write it all down and read it back to myself.
Since arriving home from our 13-day excursion, we have had some good days...and we have had some very bad days. If I can sit my impatient rear down long enough without a certain small person asking me to read one of his current three favorite books yet again, I'll lay it all out for you.

In the meantime, hope all of you out there in blog-reading world are fine and dandy!

Saturday, August 22, 2009

There's No Place Like Home...

*Note to reading family members & friends from the mother ship: I love you all and mean absolutely nothing personal by the following post! Mwah!


We are on day 10 of our 13-day journey back to the mother ship. As absolutely fantabulous as it is to have help and see the people we love and miss dearly, I am cooked and ready to go home. Is it just a natural rigidity that sets in as we age that makes us not able to sleep on other mattresses or fully relax in someone else's home? Or is it the fact that I am paranoid at all moments that one of my kids (namely M) will wander off and chew or scratch someone's leather chairs or eat their books and dvd covers? As much as people tell me not to worry about such things...or that it bothers me more than it bothers them...I cannot let these things go. My parents in particular have a ridiculously pristine home that offers zero kid-friendliness other than the fact that everything is on one story. I immediately covered their over-priced leather barcaloungers with towels and sheets as a precautionary measure...one that was most definitely warranted since M made every attempt he could to scratch them when one of the sheets was moved by B to 'help his animals go to sleep.'

It is priceless to see the way M lights up around his grandparents, aunts, uncles, cousins, and best friend, C. And he is enjoying the ability to swim in his grandparents' pool each and every day. But it is obvious that he is struggling a bit this past week and missing the comforts of his own home and his own routine. He is flapping a lot more. He skips around the house doing his own version of running laps. His food obsession has become magnified, leaving him a teary mess when we have to keep everyone else's glutinous plates out of his reach. He is so restless when he sleeps that I find him lying crossways in the bed with the covers completely tangled around him. He's cooked too.

And then there is my own ever-growing paranoia. I am well aware of the fault I have carried since childhood of worrying too much about what people think of me. If you've already been gifted such an annoying trait, I think it only magnifies when you are the parent of a child with special needs. All of these people who care so much about us...are they scrutinizing the way we handle every meltdown? Do they feel we aren't doing enough to address M's schooling crisis? Are they concerned about the state of the other half's and my relationship? I worry way too much that they are instead of just being myself and not giving a shit about it. Oh, how I wish I could stop being this way! It's all part of the process, isn't it?

I'd say that B is the one faring the very best of all of us. He has been a pleasure on this trip aside from not wanting to stay in his seat belt during turbulence on the plane. He is having an absolute ball with everyone and has even taken a few naps here in there! He wants to sleep with me every night, and though I realize I may have a little adjustment to getting him back in his own bed when we get home, I have relished the snuggling time with him. Each morning he wakes up well before I am ready to get out of bed, walks around to my side of the bed with his stuffed animal and blankie in hand, and says, 'Mommy, are we at my Grandma's house?' Or, 'Mommy, I am all done with sleeping.' He melts my heart and help keeps me sane.

Well, this stream of consciousness is hitting a brick wall. My brain is not as sharp as it needs to be with this inability to sleep straight through a night.
I will leave by saying that I am more confused than ever as to what the right answer is for my beautiful M and his future. I am fairly sure that it involves moving back to the mother ship, but I am not sure which city makes the most sense. I am worn out from the constant thinking about it and beyond ready to finally understand which direction this family is going to go next....

Saturday, August 8, 2009

Are You Kidding Me??

The other half went out for a beer tonight. He started off at our local brew pub, a respectable enough place that unfortunately had a bad Rolling Stones cover band and a lead singer whose Mick impersonation was apparently scaring people off the dance floor. And so, he decided to leave...for the bar next door. This bar is not quite as respectable, but can certainly be more fun at times. The people watching is first class, and there is a sign over the pool table that reads 'No Fighting.' Naturally, most nights you can catch a fight or two.

The other half comes home looking a bit bewildered. I asked if he enjoyed himself and he began the following tale...

Apparently a rather unattractive, down-on-her-luck 'lady' was doing her best to put the moves on my man. He went to the bathroom at one point, leaving his glasses on the bar. This 'lady' told him when he got back that she almost took them so that he'd have to call her to get them back. Niiice.

But wait! It gets way classier, ladies and gents! She then says to him, 'Hey, want to hear a bad joke?' Hold onto your hats, this one's good...

Question: 'What's better than winning two medals at the special olympics?'
Answer: 'Not being retarded!'

HAHAHAHAHAHAHAHAHAHAHAHA!



Are you effing kidding me? Seriously, we cannot make this stuff up, people. My husband, a father to a precious boy with autism who may very well be mentally challenged as well, got hit on by a woman with a special olympics joke!

She asked why he didn't laugh and he told her that a.) it wasn't funny, and b.) he had a son who is autistic. The classy lady went on to tell the other half about her 'research' in autism and how there isn't any gray area with these kids...it's just black or white. Uh-okay. Funny thing, we've got one of them-thar 'gray autistics.'

Maybe I should find this woman--who by the way has a son--and see if she'd like to babysit for us?


(Please tell me someone else laughed when they read this!)

Wednesday, August 5, 2009

Happy 6th Birthday, M!

I'm over here today...
Come take a look around!

Sunday, August 2, 2009

Thankful Sunday

Today I am thankful for the ocean. The one I look at as I wash dishes, take a shower, walk by my dining room table...something I try hard not to take for granted. I look to see how many fishing boats are heading out each morning, and to see the lone light of the last one in after dusk. I look to see if the waves are high by counting the black dots of surfers in wetsuits. I gauge the outside temperature by how far off the coast the fog lies. I love this ocean.

When we decided to move here the main plus that kept coming up was how good we thought the ocean would be for M. I must admit that for the first ten of our fifteen months here I did not have much confidence in taking my two boys to the beach. After several failed attempts I could not see the worth of trying. But as of late, when my boy gets agitated on just about any errand or outing we take, the ocean has become my sanctuary. It is the place I know he will remain content watching the waves crash, and digging, digging the sand with his fingers and toes. And because B loves to hunt for 'treasures,' run as fast as he can and dive into the sand over and over, and humors my new obsession of hunting for sea glass, I look forward to our visits to the beach. This amazing ocean is the thing that continues to cause me doubt in ever leaving this place.

I wish I could win the lottery and start an autism school of my own here on the coast...oh, and move all of our family here so we can have the support and love we miss so very much!

Friday, July 31, 2009

Summertime Blues

I'm in a funk again. (What's new?!)

M has been out of summer school for about two weeks and I just cannot motivate to do meaningful activities with he and B. The dreary weather does not help.
I find us staying in pajamas too long--a thing that can be very good a day or two here and there, but not EVERY day--and finally mustering enough courage and stamina to get us dressed and out of the house some time post 3pm each day.

The other half worked from home two days ago. I begged him all day to agree to go with us to the farmer's market. He was too spent after a long jog he had the good fortune of going on by himself, had a couple of conference calls for work, and would not be able to join us. I tried to (calmly) explain to him that things were just really hard to try and pull off by myself with both kids these days. M goes into full tantrum mode any time we pull into a parking lot, and though he will eventually calm down, having to go through the initial chaos has just about done me in, making me dread taking him anywhere. And then there's B -- my independent, oh-so-two-year-old, do-it-himself-or-he'll-scream, Mommy-can-I-have-a-lollipop, no-I-don't-want-to-ride-in-the-wagon, bundle of, uh, joy. Combine the two and just me and I'm ready for a drink before I even start!

We did manage to get ourselves out the door that day around 4:30. I am pretty sure I sighed and huffed dramatically around the other half as he lay in bed checking emails. (but he deserved that, right?!) B fell asleep (naturally) on the way there and as predicted, didn't want to ride in the wagon most of the time, but we still enjoyed ourselves miraculously and even stopped at the marine reserve on the way home to gaze at the harbor seal pupping area; a pleasant site since most of the seals we've seen around here lately have, sadly, been dead ones.

I know that I can take the boys out on my own. I know it won't be easy and we may have to turn around and go home. I'm just sort of feeling lonely and wishing I had someone else to go with me...namely the other half. I'm not griping here. We do things together as a family. But during the week when he is working, I so wish he didn't have to work so he could be with us! Silly, isn't it? And gosh, he would be so surprised to know that I actually wished he was with us during the week...haha. (Shh! Don't tell him!)
But really, there's no one that can suffer through failed outings like he and I can together. Don't get me wrong...some of my good friends will hold it together and keep me calm during failed outings WAY better than the other half can. It's just that when it's the other half with me, he and I can sort of wallow in it all together and share those knowing looks of 'Holy crap, this is hard' with one another.
If I'm having a particularly tough time getting B to listen to me (wait, when am I NOT having a tough time getting B to listen to me?), he can step in and take control of things. And likewise with M. With friends and some family, there is a learning curve, a (completely understandable) hesitancy to jump in and assist--especially with M. I think that in this crazy life we live--the one where the rate of divorce is sadly quite large--we both know that no one else could ever love, understand, and let's be honest here, tolerate, our children the way he and I can together.

So in my own weird way, I think I just gave the other half a compliment! But like I mentioned earlier...shh! I like to keep him on his toes and do what I can to not inflate his head too much :)

Monday, July 27, 2009

Huh...

Since I just changed linens yesterday and have to do it AGAIN today, I decided to google 'diapers for older kids' to find some heavy duty diapers for kids with special needs. I found some options that had links to the stores that sold them off to the side. Funny thing...I decided to click on one particular site called 'Diaper Connection' only to find that it is NOT for my child, but for 'Lifetime Infantilists.'

Now, I don't consider myself to be naive; and I suppose I knew there were some interesting folks out there who were into this sort of thing. I just hadn't ever had the pleasure of any sort of close encounter with this unique hobby.

I have to tell you...after all the freaking diapers I've seen, I cannot for the life of me understand why an adult would CHOOSE to purchase these when they weren't a necessity. Or are they?

And that, loyal readers, is a point to ponder.

Ahh...I feel so enlightened today!

Friday, July 24, 2009

This Has Nothing To Do With Pee, Autism Or School



Made me laugh out loud and brought tears to my eyes. Thanks, Jill & Kevin. I have no idea who you are, but you look like you'd be a lot of fun to hang out with!

Tuesday, July 21, 2009

Status

Debbie is: tired of changing, washing, folding, putting on bed linens. She is also tired of wet carseats and clothes that smell like urine.

PLEASE MAKE THE PEE STOP!

M has been soaking his bed probably three times a week the past couple of months. He has also been wetting his pants 1-2 times/week during the day. It is as though he is completely unaware of it or just does not care. He will sit in it until we notice. This is the child who had not had a single daytime accident in about 18 months. Why is that??
And then B decided at some point between me putting him to bed and him actually going to sleep to take off his pants and diaper. A very pissed off (ha!) B came sopping wet into my room at around 3 a.m. this morning. Oh, and did I tell you that he's taken to pooping on the floor? It is a cross between wanting attention and thinking it is hilarious when one of our dogs eats it. (Totally disgusting. Want to come pet my dog?) Psych 101 tells me that this is yet another instance where B is acting out in ways similar to his brother (though when M pees it is not because he is acting out) in order to get more attention from us. It's tough to keep your reaction in check. The bribe, I mean promise, of ice cream tomorrow seems to be helping today though!

I have finally wised up when it comes to my own tempurpedic bed. After having to unzip the fortunately-waterproof-yet-not-so-easy-to-remove-and-put-back cover a zillion times I finally bought another waterproof mattress cover to go on top of it.
I'm quick these days, I tell ya.

Does anyone have any recommendations for a good overnight diaper that I haven't heard of yet? We are currently using the Overnites, size S-M. I have also tried that new competing brand and they suck even worse. Anyone? Anyone?

Monday, July 20, 2009

Statistics & Animal Assistance

On one of the (several) boards I read for parents of kids with special needs, a link was posted for a new non-profit here in the Bay Area.

Animal Assisted Happiness sounds like a really wonderful place.

Here's a snippet from their description of what they do:

At Animal Assisted Happiness, we recognize that children with special needs and their families struggle on a daily basis. We are here to help by bringing moments of joy into their day. We let your child interact with animals and experience a smile that only animals can bring. All our programs and services are free of charge. And we know your schedule can be challenging so we offer flexibility and a variety of programs to suit your day

Sign us up! I will definitely look further into this organization. The connection our kids are able to make with animals that they may or may not be able to make with humans is astounding.

As for the statistics reference, the homepage of this organization states a 2000 census bureau stat of the following:

In the United States, there are nearly 2,500,000 children with one or more special needs. In the Bay Area alone, there are over 13,000 children with these challenges.

13,000. THIRTEEN THOUSAND. Do you know how many people live in the entire Bay Area? I could look it up right now, but I'm too lazy. Let's just say that a lot of people live here and for some reason that number seems small to me. Why in the world is that? I mean, 13,000 is a lot. But to me it sounds like a little right now, and a number I wish my child didn't fit into.
I guess it's similar to when I saw last Fall's report from the psychologist we hired to independently assess M. The one that said that he was possibly 'mentally retarded' and 'performed at a nine to twelve month level.' Man. That hurt. And so does the number 13,000. But as I find myself saying so often these days, it is what is. I wonder what the statistic is for number of parents of kids with special needs who say that?

Sunday, July 19, 2009

Thankful Sunday

For those of you who don't get loving animals like family, my apologies. This week, however, I am most certainly thankful for eight years with a really sweet-natured, underwear-eating, trash can-diving, doe-eyed, fox-like, trustworthy, love-of-a-dog, my Daisy Doodle.

But more importantly, as I reflect on her, I am thankful for going with my gut. It's no secret I have always frequented local animal shelters in towns I have lived. (And we all know that's been quite a few towns) When we moved to the Los Angeles area, I would go to the Agoura shelter about once a month just to offer up love and pets. I truly had no intention of adopting a third dog until THAT DAY. I had visited all the pens and came to hers last. Honestly, I couldn't believe a dog like her was even at the shelter and was even more surprised to later learn that this was her second time there. She'd lived with her brother, a fireman, and his wife for the first two plus years of her life. After the fireman and his wife got a divorce, apparently she and her brother were left on their apartment balcony during the 24-hour period or more that he had to work. When neighbors complained, he brought Daisy to the shelter. Soon thereafter she was adopted by a woman in her 50s. This woman lived with her daughter and two-year-old granddaughter. Shortly after adopting Daisy, the woman's mother became gravely ill, thus requiring the woman to spend much of her time away from home. After only three months, Daisy was once again returned to the shelter.
I remember petting her for a very long time and not at all wanting to leave. It was close to closing time and I weighed my options, knowing full well I most certainly SHOULD NOT consider taking this dog home without consulting the other half. But would it hurt if I drove really fast down the street to my house to grab Hank & Syd so I could just see if they got along with her? Or was it that I just wanted to get her out of her tiny cage and into the play area with other dogs for a little while? Well, no harm no foul, I thought. But then...she walked straight past my dogs and they could have cared less. Nary a hackle was raised. They stayed in that pen, not giving a rat's ass about each other (in a good way) for nearly 30 minutes. I COULD NOT leave this dog there. She had to come home with us. I was in for a world of trouble and didn't even care.

I adopted Daisy and loaded her in the car with my other two dogs. It was as though she'd always been a part of our pack. Amazing how this girl always behaved that way. She was the only dog to never flinch when a new foster came to the house, even when the other two were snarling and anxiously sniffing the new arrival.

The other half came home from work and I said to him, "I have a surprise for you!" As if on cue, Daisy came running down the stairs, tail-a-wagging, to greet him. My God, he was so angry. He would not speak to me the rest of the evening. I finally went to bed, with Daisy laying peacefully on the ground next to me. I will never forget that night. As I 'slept' I heard the other half come in the room. I watched him through my eyelashes (quite sneaky am I!) as he walked by the bed and then hit the ground to crawl on the floor to my side where he lay there petting and talking sweetly to this new addition. It was priceless and so typical of the other half. He's much softer on the inside than he likes for the rest of us to know!

I endured eight years of him being able to say to me that one of the worst things I ever did in our marriage was to adopt a dog without his permission. And when someone would visit our house--and inevitably end up falling in love with Daisy--he'd joke, 'Take her home. Try her on for size.'
But when she died and I called him to tell him, he soon after sent me a text message that read 'Really sad to see her go. She was a very sweet dog, but it was quick at the end and we should all be so lucky.'

So if adopting the world's sweetest dog was one of the worst things I have done in my marriage, I'd say I'm doing okay!

But one last thing that I am so thankful for with this sweet animal: on the day she died we had relatives from Ireland who were departing our home. I had a strong feeling that morning that things were coming to an end and asked all of the kids to be calm and quiet around her. I laid her on the couch before departing for the airport, and I prayed on the way home that she would still be alive when I got there. She was. And an hour later when I had to take M to a quick doctor appointment, Daisy used every ounce of energy she had to jump off the couch she'd laid on for nearly five hours so that she could come with us. She staggered and fell on the way to me, but I carried her the rest of the way to the car. I could tell by the odd way she curled her body in the front seat that she was not getting enough oxygen, but she was with us--for one last drive--nonetheless. She was unable to get herself inside and did not move on her own after that, but there was something so utterly beautiful and touching about the way she MADE herself move to come with us that still makes me cry just to think about.

I am still having a hard time adjusting to having only two dogs. I can't seem to remove her small bowl from the pantry and each time B helps me feed the dogs he says, 'Is that Daisy's bowl? Is she still at the doctor?' We have talked about it the best I know how and read a sweet book about dogs in heaven. After asking about whether she'd come home from the doctor again today he said, 'No, Mommy. She died.' I wasn't sure how to respond, so I didn't. For 2 1/2, B is wise beyond his years. I don't know what he understands exactly, but I have a feeling whatever it is, it is probably more pure than even what I understand.

And so, with all of that, I will sign off for the night. I can't say that I won't still look behind me to see if she is laying on her bed. And I can't say that I won't still look for her on the floor next to the other half in the morning. But I will pet my other two dogs who are mourning as well and we'll all remember our little lady...the one who never had an unkind 'word' for anyone. Rest in peace, sweet doodler girl.

Wednesday, July 15, 2009

And Then There Were Two




I just watched the world's sweetest dog die. This is the second time in my life I have witnessed such a thing and I can say that it is no easier the second time around and totally saddening. I am thankful, however, that it happened at home on her doggie bed where she lays as I type this; as I wonder what to say to my children who danced to music just feet away from the end and continue to grab toys from the box next to the 'sleeping' dog. Naturally it is after the vet's office has closed. And naturally the other half is out of town. I just got a call that our sitter is on her way and I will load Daisy up in the car and drive her over the hill to an after hours clinic to say goodbye.

More soon. This girl was really special :(

Friday, July 10, 2009

Friday, July 3, 2009

What A Difference A Day Makes

The second half of yesterday was B-A-D. (And no, not in a Michael Jackson sort of way)
I was in the foulest of foul moods, and I'm sure now most of my neighbors are aware of this fact as well :)

I was going to blog about it last night, but I kept thinking that my opening line would have been something to the effect of me calling the other half on the phone, (as he was wining and dining clients in downtown San Diego at the time), and saying 'GET ME THE FUCK OUT OF THIS STRESSHOLE!!'

And that would have likely been followed by a very large string of run-on sentences describing all of the pleasantries my children, dogs, bum ankle, and lovely, multi-storied, hilly-freaking house were providing me on an afternoon where all I really wanted to do was watch them in the backyard as they got a little fresh air and I drank a nice glass of chianti and read my People magazine. Uh, yeah...not so much.

Seriously, people. It should NOT be this hard to do such a simple thing! But it is. This is my life, for better or for worse.

A couple of weeks ago a similar scenario played out, but while we were attempting to have the kids play outside the other half and I were trying to grill some dinner. Total chaos. Not one moment of someone not crying, screaming, asking for this, that and the other, PUTTING THEIR HANDS DOWN THEIR PANTS (ahem), etc. The other half and I were beat. Exhausted. Stick a fork in us, we were done. He looked at me with weary eyes and said, 'It wasn't supposed to be this hard.' I immediately went to him and we hugged, speechless, for quite some time. It was actually a good moment within a bad one because I needed to know that he thinks this is really freaking hard sometimes, too.

But as bad days become a memory you'd like to forget, good moments (maybe not entire days!) follow to help make up for it. For instance, I was downstairs putting B to bed last night while M was upstairs on the potty. I thought I heard a noise, so I yelled up to him, 'M! Are you okay?' Normally I would not receive an answer from him. In fact, I don't believe I have ever received an answer from him when I have asked if he was okay. But sure enough, I heard his sweet, little voice respond appropriately to me, 'Yes.' He said 'yes!' YES! He doesn't generally say yes. He'll sometimes say no, but yes?! It was a beautiful thing.

And then there was this morning. We all slept in until a glorious 8:20 am when I heard M chattering away in his room. I went in and was greeted with the most beautiful smile. I can't truly describe this smile except to say that if you know M, you know how special it is. It is a smile that cannot be faked; one that depicts pure happiness and the innocence of my boy who wears his emotions unabashedly, unlike typical people who are better at masking them. I immediately got under the covers next to him and we snuggled, smiling all the while, for a good ten minutes. It was lovely and the right way to start a new day.

And so here we are; a new day. And all I can do is hope that the second half of it goes as lovely as the first!

Wednesday, July 1, 2009

What To Do?

We recently took another stool sample from M to determine what was going on inside his gut. Given his hands-down-the-pants, behavioral issues, frequent illness, etc. his doctor thought it wise.

We give M probiotics to help balance his gut and keep him healthy, however, his gut is NOT balanced nor is it healthy. We had done the last stool test a year ago and subsequently treated him for some bacteria. This year he has more strains of 'bad' bacteria present at very high levels. The lab that analyzes this stool tests the bacteria that is present against various antibiotics to see which they are resistant to and which they are sensitive to. Unfortunately, the strains of bacteria that are currently present in my little guy's system are resistant to almost all of the basic antibiotics and sensitive to a very, very strong antibiotic, Cipro. I went to the pharmacy yesterday to pick this antibiotic up and the pharmacist came to speak to me. She told me she was uncomfortable letting me administer this drug on a child as it is usually prescribed to adults.

I have a call into our doctor (at Thoughtful House in Austin, TX), but also turned to my trusty parent listservs for some advice.

What I have learned thus far is that Cipro is treated for very, very bad bacteria including anthrax. I have also heard stories from another parent like one who had to give two rounds of it to her son. (He did fine and it made a huge improvement in him)

My son has been in a decline over the past year and if these harmful bacteria are the root of the cause, clearly I want them gone...but at what risk do you do that?

I am at a bit of a loss as to the answer to that question. If anyone reading this has experience with Cipro, I'd be very interested to hear about it. And if anyone is interested in learning more about the gut flora results, I'd be happy to post them or email them to you.

Wednesday, June 24, 2009

Old McDonald Had Some Overalls...

...Eeyi Eeyi Oh!

After searching unsuccessfully for overalls in a size 6, I finally wised up and remembered dear old ebay. For $8.25 we are the proud owners of a pair of barely used Osh Kosh overalls that fit M perfectly and have...dare I say it out loud...kept his hands off his nether regions for most of the day!

Now granted the poor child is trying his hardest to squeeze the be-jaysus out of his unit through the denim, but it is nothing compared what we have been dealing with and certainly won't allow for eau de penis smell on his fingertips. The only problem?? Now I need to check back on ebay for another pair of overalls because Mama does not want to have to wash these things every single day!

Anybody have a pair of boys' size 6 overalls they want to part with?!

Sunday, June 21, 2009

Thankful Sunday

Today I am thankful for something unconventional. Something most people would think me callous for if they weren't inclined to listen to the explanation following the words, 'today I am thankful for death.'

I was blessed to have some amazing great aunts in my life. These were the sisters of my maternal grandfather; he being a man I never met...a man whose own demons prevented him from being a father to my mother. Because of that, and because his wife (my maternal grandmother) had even bigger demons, my Mom was raised by and with these aunts. They filled the role of grandparent that was not sufficiently filled on either side of my family, and for that I am ever grateful.

My Aunt Peggy, whose given name was an elegant 'Evelyn Lucille,' was the youngest of the aunts and like a big sister to my Mom. She was tall, thin and striking. She loved nothing more than a good joke or a day shopping with her nieces. She was a load of fun to be around.

Peggy was diagnosed with Parkinson's disease. I imagine it was some time in my mid-teens. The decline was noticeable from the get-go and she had been severely disabled from her illness for at least the past 10 years. Two and a half years ago we thought the end was imminent and Peggy was put into a hospice facility. You normally hear about people going to hospice right at the end, but not Peggy. She stayed in that hospice facility for over two years until they downsized earlier this year due to the economy and my uncle Norman was forced to bring her home to their tiny apartment. We didn't thinks she would live much longer after he brought her home, but once again she proved us wrong and survived another four months.

I got the call this morning from their daughter that she had passed some time this morning. She had not had a morsel of food or drink for nearly two weeks, nor had she passed any urine during that time. It is astounding that a human body could sustain itself for that long. The hospice workers believed it was because her metabolism had slowed so greatly over the past couple of years that it required close to nothing to carry on its duties. For me, though, I think she held on all this time because she was waiting for a call from someone she loved greatly...my Mom.

I won't go into all of the details as it would take pages to try and type, but because of various hurtful situations during my Mom's childhood and adulthood, she and Peggy have not talked in nearly 15 years. I had carried the burden of this for too long and have just recently been able to unload my worries over it for the most part. I think it sucks that my Mom could not be the bigger person and called my aunt. I tried desperately through the years to arrange it or get it her to at least write a letter, but it was not to be. I tried one last time when I first heard a week ago that the end was near and my Mother told me that she would not call and that she knew I didn't understand. Yep. You're right. I don't.

So while I am sad for the strong feeling I have that Peggy has been waiting these past couple of years for my mother to contact her, I am very thankful that she does not have to wait any longer. No one should have to live the end of their life the way Peggy did. For such a once-vibrant woman, this was cruel and undignified.

Peggy, I love you, and I am so happy you are no longer suffering. Tell your sisters, Mimi and Hazel, that I miss them every single day. Thank you all for being so special to me. I have always felt the presence of Mimi & Hazel watching over me and my boys and I have no doubt I will feel your presence too.

Thursday, June 18, 2009

If I Had A Nickel...

...for every time I said, 'M, don't touch your penis,' 'hands out,' or 'M, get your hands out of your mouth,' I'd be a kazillionaire.

Seriously, folks. We have a penis problem 'round here, and it's rather stinky.

My child is so obsessed with his unit that you will find him probably 50 minutes out of each hour with one hand down his pants and one in his mouth. Have you ever seen a horse crib? It's the ultimate endorphin-high. I think my M has started his own version of cribbing with his new habit. It's like there is some imaginary string connecting the one hand down the pants to the other hand in the mouth. The two work in cahoots with one another except when the mouth is otherwise occupied with food-eating or a therapeutic chewy.

It really stinks (no pun intended) to be grossed out by your own kid, but honestly, his hands smell awful and I can only wash them so much. The dance we do after a session on the potty is something to behold. You try helping your nearly-six-year-old get from the potty to the sink without his hands touching you. It is becoming an art, no doubt. I joked with the other half that we could add a new, disgusting jelly belly flavor to the Harry Potter collection. Have you ever tasted snot, vomit or ear wax? I'm betting 'penis' would be the worst of the lot.

All joking aside, (was I joking??), there is likely a biomedical cause beneath all of this. M has battled yeast overgrowth issues in the past and is probably dealing with one now. DAN! doctors believe that kids with autism have more of an imbalance of bacteria, yeast, etc. in their guts that can lead to a variety of 'unsavory' behaviors. They believe in healing an autistic child from within, thus lots of vitamin supplements, dietary changes, antibiotics, anti-fungals, steroids and potentially even chelation. There is not a one-size-fits-all treatment plan for our kiddos and the plan of attack is constantly changing. Blood tests, urine tests, stool tests and instinct all come into play. We finally were able to successfully get a stool sample from M a few days ago that was promptly whisked away by the blissfully unaware FedEx man to the lab. I'll report back on the findings as soon as we get them.

Meanwhile, I finally found a pair of used overalls on ebay (because NO ONE has long overalls for sale right now) that should arrive any day. We're going to see if wearing overalls with a shirt ON TOP will help curb the now-obsessive, penis-grabbing habit. Wish us luck!

Sunday, June 14, 2009

Thankful Sunday

Today I am thankful for:

-My husband on his 35th birthday (AKA 'Flag Day,' or 'The most under appreciated holiday')

-Karma and knowing that it really can come back to you.

-A second chance to appreciate the sweet, gentleness of my dog, Daisy.

-The kindness of strangers

-The stillness of a coastside, Sunday morning even when M doesn't want to ride horses at the Square Peg ranch.

-List formats



Happy Sunday!

Saturday, June 6, 2009

Remember To Take Care Of YOU!

Today I'm over at Hopeful Parents. I will be the first to say this is not my best contribution as today I am realizing the effects of too many beers last night. I am such a lightweight!

Monday, June 1, 2009

Come On! Everyone's Doing it!

Okay, so not everyone, but three, whole people are not afraid to admit to the world that they are followers of 'This Is My New Normal.'
Why not join the bandwagon? Pretend you're a member of a really cool, exclusive club. Pretend I give you free crap. (pretend, okay?)

I mean, comedians don't become comedians so that they can tell jokes to themselves, do they? Heck no! They want an audience!

So if you're reading, fess up and let me know!

Sunday, May 31, 2009

Thankful Sunday





Since I have been having a hard time blogging lately, I thought maybe it would help me if I had some sort of regular feature. My friend, Mel, started a 'Feed Me Fridays' entry that I've really enjoyed, so I'm going to start my own 'Thankful Sundays' post.

Before M was born, the other half and I discussed the topic of religion and how we wanted to raise our children. We are both well-lapsed Catholics, and neither of us felt the call to raise our kids in the church. (much to my parents' dismay) I have always felt more of a spiritual call than he has, however, so it was important for me to have a plan; some sort of regular activity that our family engaged in that connected us to a higher plain. We decided that on Sundays we would do some activity together that brought us out into nature so that we would have the opportunity to not only witness such beauty firsthand, but so that perhaps we'd have the impetus for natural questions about things like 'where did this tree come from,' etc. When speaking with other mothers-to-be I'd say that we wanted nature to be our church. Well, it would seem that plan was made from good intentions, but never quite got off the ground in the way we had discussed. It's not that we didn't go out in nature on Sundays, it was just that it wasn't a regular outing. And with M's language deficits, we certainly have not heard any introspective questions from him. (Though I feel certain they must exist given the calm he so often exhibits on a nice walk in the woods)

While we were on our getaway last weekend, we spent three hours of our Sunday walking through Van Damme state park. We walked for several miles slowly, deliberately; pausing to skip rocks, to admire the unfurling of a fern leaf, or to tell stories about the 'troll' that must be living under the bridge. It was a typical north coast day, gray and quiet; the cloud cover making it necessary for a jacket while simultaneously enveloping us in a sort of warmth that almost makes you feel like you are living inside of terrarium. It was lovely, and it put all of us in a great mood, reminding us how important it is to take time to be together like this without the interruptions of television, phone calls or a schedule.

So this Sunday I am thankful for last Sunday. I am thankful that B lasted as long as he did on the walk (with many a bribe, but he made it!) and that M's body provided him with enough muscle and strength to walk like a champ with little assistance from us. I am thankful that we were able to extend our trip so that we could explore the beautiful north coast a little longer. And I am thankful that we had such a nice time that we are already talking about going back! What are you thankful for this Sunday?


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