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


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 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


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.