Sunday, May 13, 2012

Mother's Day

I feel inspired to write today after a nearly six month hiatus.  This last year, plus some, has been such a whirlwind of emotion and growing, educating and gaining knowledge.

(Wouldn't you know that inspiration is short-lived as B interrupted it only two sentences in to ask for a sandwich...sigh)

So...as I was saying...

This last year has been trying, to say the least, but I have pressed forward with a million and one doctor appointments for M, along with a million and one blood draws and other tests, in an effort to gain more knowledge of  'The Thing' that has robbed my sweet boy of words, skills, and his once happy disposition.

It all began with the awful constipation he began experiencing in April of 2011.  Why was a child who was regular each and every day all of sudden experiencing low motility and horrid, horrid bouts of pain?  We still don't have an answer to that question, unfortunately, but by going to the ER during that, we did get ourselves on the right path.  As those of you who have followed our story know, M was then diagnosed with a rare endocrine disorder called hypoparathyroid disease.  We have to monitor his calcium and phosphorous levels fairly frequently (we've never quite gotten the phosphorous levels down to a normal level for some reason) and M will need to take elemental calcium supplements (3x/day) along with a synthetic form of vitamin D (2x/day) for the rest of his life.  From there we decided it was a good time to revisit a geneticist as our previous encounter when M was four and living in Austin provided us with absolutely zilch.  In fact, the doctor at that time told us to not waste our time even doing a blood draw as she knew we wouldn't find anything 'for at least a few years until they develop a blood test for autism.'  Funny that a.) no such test yet exists, and b.) she didn't know what the fuck she was talking about since his issues seem to go well beyond that of a traditional autistic person.

Our genetics team at Stanford (as well as all of our specialists there) have been terrific thus far despite not coming up with the golden egg to help M.  Frankly speaking, they've given validation to this Mom and my dogged search for answers, and that's very valuable to me as I don't even always have the support of the other half in this regard.  Everyone seems to agree that there is some type of mitochondrial myopathy at work...but which one?  We've tested negative on so, so many things.  Fortunately, we've ruled out the most frightening of the metabolic disorders, so I suppose having to wait is a good thing.

Two years ago an EEG was performed on M.  The results showed that he had a rare brain spike in his right temporal lobe.  The neurologist at the time said that he'd likely never have seizures even though this 'spike' put him at a greater risk.  He told us he'd write us a prescription for ability (an antipsychotic we politely declined) and basically washed his hands of us without even the tiniest inclination to think outside the box.

Our new neurologist (another great validator--thanks, doc!!) told me that said neurologist is highly regarded, HOWEVER, our M belongs in a teaching hospital where the whole picture is taken into consideration.  She also made a statement that none have made prior to this:  She's not entirely comfortable just calling M autistic.  More reason to search...

A second EEG was performed two months ago.  The staff was amazing with my extraordinarily fearful and sensory defensive boy.  We had (as we always do) several strong hands, including mine, to hold him down as we wrapped him tightly like a mummy in two sheets.  We had to do this in order to get the probes on his head, and then during the 30-minute test, I sat closely to him on the examination bed with his iPad in view and a hand ready to hold him when he tried to wrestle free of the sheets.  The test showed constant activity similar to the test two years ago, though this time in both the left and right temporal lobes.  This neurologist described these as 'discharges' rather than spikes, a term that makes so much more sense to me given that ever since M was about six months old we've described these frequent episodes of sound and movement that seem as though a shock of electricity is going through his body.  Though no actual seizures were found, the doctor wants to talk with us (next week, actually) about possibly trying anti-seizure medications.  She feels that they may help him improve, though cautioned that we would have to be very careful in our dosage and monitoring of their efficacy.  I'll report back if we choose to go this route.  I have a niece who has epilepsy and has had quite a bit of difficulty with anti-seizure meds, so I am nervous but also excited about the possibility of improvement.

Last week we had an anesthetized MRI performed with dyes (a brain spectroscopy), as well as a skin biopsy taken for genetics and blood work drawn for a whole new slew of mitochondrial disorders.  The MRI showed no lesions or tumors, thankfully, and we should hear back on the biopsy and blood tests in the coming weeks and possibly months.

On top of all of this, we've gotten another whammy on M's diagnostic checklist:  precocious puberty.  I've been concerned that this was happening for nearly nine months and had remarked to our endocrinologist that I didn't think it was quite 'normal' for an eight-year-old boy to need his hair washed nightly, to have strong body odor, and to already be getting pimples on his nose and sometimes forehead.  She wasn't all that concerned, but mentioned that I should be looking out for pubic hair and penile growth.  Sorry for the TMI, but I definitely called her about a month ago with those very things in check.  Off we went for yet another blood draw and sure enough, Mama was right!  Now for the tricky part...do we begin injections every three months to pause puberty until a more acceptable time?  This appears to be a question of ethics to many people, though I'd like to think it's yet another one of those bits of business that people should keep their noses out of unless they've walked a mile in the other person's shoes.  I had no idea how controversial this idea was until I spoke to a few parents who have chosen to pause puberty.  Both asked that I speak to them privately rather than on a semi-private special needs board.  How sad that these parents, when faced with such a tough situation for a child already experiencing so much difficulty, had to worry that others would judge them for their decision?

We have not yet decided what we will do, but I am most definitely leaning toward pausing puberty for many reasons, not the least of which is that I don't want my child to possibly start getting facial hair when he's 10 years old. (We have difficulty cutting his hair--I can't imagine he'd ever let us touch his face to shave him) I've also become very afraid of the chance of him having a grand mal seizure.  The risk for these greatly increases in kids like M when they go through puberty.

If anyone reading this has been faced with this same dilemma, I invite you to email me with your experiences if you are willing to share them at thisismynewnormal@hotmail.com
Please know that anyone who chooses to flame me will immediately be blocked.  (Doesn't it suck that we bloggers have to put that sort of disclaimer in a post??)

Today--Mother's Day--is bittersweet for me, as nearly all of them, save the blissfully ignorant first one, seem to be.  I find myself even more grateful for the 'normalness' that is my sweet B on days like this.  He's been so excited about my 'special day' all week long, and he has done an amazing job of making sure I know how great I am and how much I am loved.  He roused the other half from bed early this morning to jointly create an amazing breakfast that they brought to me in bed.  It made me a bit sad to feel happy that M remained asleep while B and the other half worked upstairs in the kitchen together.  But I knew that if M had been awake, I would have had to get out of bed and Daddy and B wouldn't have gotten the quality time together that they wanted.  M woke up screaming with belly pain and my immediate thought was, 'here we go again.'  But I'm pleased to report that the screaming was short lived and my boy surprised me by coming into my bed without even being asked and laid quietly with his brother and I for nearly an hour as we snuggled and watched Sponge Bob.  I appreciated that moment along with the kisses I was able to easily receive from him today.

I'm not the same person I was when I started this blog nearly four years ago.  But like the title of my blog says, this is my new normal.  It's going to always evolve with peaks and valleys...I know that now.  I'm not going to always feel like I can or need to be funny.  I've still got my edge and my honesty...I know no other way, but there's a solemn sort of maturity that has crept into my being over the past four years as well.  I miss the old me at times, but I know that the new me is the one that keeps forging forward to find ways to help and protect my son.  The new me has also lost hold of my patience more than I care to admit, and that part of me I do hope to one day regain.

I know that most mother's, of special needs children or not, feel the guilt that they are not good enough.  I hope that of all the gifts you may receive on your special day, the one you cherish the most is the knowledge that you are doing a good job even at your seemingly worst moments.  Be kind to yourself today and always.  And I'll try to do the same, okay?

Happy Mother's Day!!

Tuesday, December 13, 2011

The Tipping Point

I haven't blogged lately...as you may have noticed.  Hard to blog when the majority of the times that you actually feel like writing, you hesitate because it's generally not good news you'd like to share.  M continues to deteriorate right before our eyes, and no one can yet tell me why that is.  We await results from yet another genetic test for congenital disorders of glycosylation.  I continue to be on high alert to make sure he doesn't get headed down the path of severe constipation again.  He's currently *this close* to it, and to add to my ever-growing list of neuroses, is the new job of making sure he's ingesting the proper amount of miralax to make him have a bowel movement...making sure he gets his probiotic every day...making sure he gets his calcium supplement three times a day...making sure he gets the prescribed medicine to treat his endocrine disorder twice a day, etc.   I'm tired, y'all.  I'm doing a good job of going out with my girlfriends when I can, but like a junkie, those highs only last so long until you need another fix.  And that need starts happening sooner and sooner than the last time.  There is so much crying and yelling at our house, all of our nerves are completely frayed.  Poor B has finally shown signs of being affected by it all as well lately.  The poor kid can't seem to escape special needs and disruptive behaviors as one of his peers at his new preschool has recently been diagnosed with sensory processing disorder.  This boy is constantly hurting his classmates by pushing them down, throwing things at them and knocking down anything they're playing with.  I've tried so hard to arm B with the tools of empathy and understanding since I understand all too well what this child's mother must be feeling right now, but I am starting to suspect that since the boy's Mom is a part-time teacher at this school, that the sides have been taken, and my sweet kid's needs are likely being seen as inferior to the one disruptive child's.  What's the right answer here?  I've talked with the teacher and didn't feel like she seemed to think things were as bad as B says that they are.  Anyhow...

I will say that a very high point did occur the second weekend in November.  I had the amazing chance to meet two women I've known virtually for a very long time.  One woman came here from Boston with her two boys.  She and I were on a birth board on baby center.com when we were pregnant nine years ago.  Autism hadn't entered either of our minds at that point, but we followed each other through toddlerhood to diagnosis and have been online friends ever since.  The other came all the way from Australia with her husband and son.  We've been on an autism parenting board with one another since our boys were about two years old.  At that time, we remarked on how similar our kids were to one another and how they seemed very similarly affected by autism in their personalities and their immune system function.  She's been right there with me, virtually holding my hand as we saw her boy make great gains in his abilities and my boy declined.  I cherished both of these women before, and after having met them and their kids, know that they will be important parts of my life forever.  We laughed like you wouldn't believe and told stories that we wouldn't tell to 99% of the rest of the world.  They are amazing.

Back to M and our tipping point.  He's gotten to the point of not being to go anywhere in public without a huge, aggressive meltdown.  At 74 pounds, it is getting more and more difficult for me to control him, and that frightens me greatly.   As thick as my skin has gotten through the years, I am frankly exhausted and quite angry with the embarrassment I feel from these meltdowns.  B just began taking a karate class on Wednesday evenings at a place that is located in a busy strip mall in our small town.  Occasionally the other half is able to come home from work so that I don't have to bring M with us (relief!), but most of the time he has to join us, and he is causing a huge scene inside the karate studio and outside which forces us to spend the rest of the time in the car.  It's not fair to my four-year-old to not have his Mom in there watching him.

School is becoming a challenge again as well, and despite the amazing patience and kindness M's new teacher has shown, he has started to once again dig his heels in and resist going in some mornings.  One such time about two weeks ago during terrible winds (a definite trigger for M) we were forced to stand outside in the cold and the wind to try and calm him down until he could go back into the classroom.  His school is made up of all portable buildings, so there was no safe place for he, his aide and I to go.  We tried to go to the cafeteria, but the p.e. class was taking place in there (neat, huh?), and we tried to go to the occupational therapy room, but it was locked.  In order to get him out of the wind, we finally ended up in the entryway of the boys bathroom.  Not the most ideal place, but the best we could do.  We finally got him calmed down and asked him (with the help of his iPad as a communication device) if he felt better.  He pressed 'yes.'  I then asked if he wanted to go back to his classroom and he pressed 'no.'  After a few more minutes I asked if he wanted to go home, and when he hit 'yes,' it was our 'ask and you shall receive' moment, and I took the poor guy home.

Today at pick up his aide informed me that at recess there were a group of kids sitting up against a wall outside staring at him and laughing.  She (thankfully) told me that she put an immediate stop to it and told the playground monitor about what had happened.  Apparently that Mom is also the parent of a child with autism, so she says that she will be on it and make sure it doesn't happen again.  But that, combined with everything else makes me realize that something needs to change...and soon.  M can't live like this, and we can't live like this.  Please keep our family in your thoughts.  We could use them!

Sorry to come in with a long-winded, depressing ramble, but there you have it.

No matter what, though, we know we are still fortunate in so many ways and we will do our best to remind ourselves of that fact this holiday season.

I hope that your families are happy and well and that you make it through the holidays with more smiles than tears.  Here's to a New Year...just around the corner!

Monday, September 12, 2011

I'm A Nerd, That's Why

I dropped a tired M off at school today.  Mondays are the days the kids meet for a few minutes on the black top before starting school.  A time when the principal talks about the values the kids should exhibit that week; a time to say the pledge with the whole school; a time when names are drawn for recognition of a kind gesture the week before.

M's name has never been called at one of these meetings.  I doubt M's previous teacher ever submitted his name for one of the drawings, frankly, though in fairness I shouldn't say that affirmatively since I don't have proof.

M was in his classroom with his aide and I was walking back to my car as I heard the names and their room numbers called.  And just as I was almost out of earshot I heard it.  'M, A-12!'  And even better...all of the other names had elicited hand claps, but my boys' name elicited claps and a loud 'Woo!' from a boy in the crowd.  I can think of one boy in particular who probably did that, and I'll be sure to pass along my own recognition to his Mommy to make her as proud as I felt for my little guy today.  Yes, I am such a sentimental dork that it made me tear up with pride as I walked to my car.  (and again when I repeated it to my other half--oy!)

Thanks, new teacher, for taking the time to recognize my little man and put his name in that drawing.  The inclusiveness this woman has shown in just a few weeks of school are so huge and honestly took very little effort!  I plan on sending her an email now to let her know how appreciative I am.  Gotta keep the flow of appreciative recognition going!

Tuesday, August 23, 2011

It's The Little Things

I took both boys to Whole Foods the other day at the busiest shopping time of the day.  I knew this wasn't my best idea, but sometimes you have to get groceries and can't think about all the reasons why you know it isn't going to be a pleasant experience.

Let me preface this story by saying that M and I have been enjoying quite a few one on one shopping trips lately.  He has become very good with my prompt of 'hands on the cart' as the way to keep track of him and not have him wander off when I am reading a label or otherwise preoccupied for a split second.  Keeping his hands on the cart also helps him to not be tempted to do his contorted-faced, hopping, wild hand flapping dance that brings unwanted attention to us in a split second.  I need to get through my shopping trip without feeling like I have a hundred eyes watching us from aisle to aisle.  (and, yes, I am much better about tuning said eyes out, but let's be honest here...you always know they're there!)

Having both boys with me brings on challenges that I can't always figure out.  Yes, my little B man is quite the talker and this may put a little more stress on M; but during this particular trip, B had been warned (heartily, I might add) that he best keep calm and quiet so as to not insight aforementioned wild hand flapping dance...or worse, the eight-year-old, appears-too-big-to-be-having-that-sort-of-public-tantrum tantrum.

B actually was doing a great job of staying chill while riding in the seat of the cart as M and I pushed him along, but apparently the crowds and overstimulation of the store were just too much for M that day, and so every five minutes or so, I found myself trying as calmly and discreetly as I could to redirect my eight-year-old from crying and pitching a fit.  Yes, many people will jump ship in these situations--and we've done that before too--but I live 30 minutes from Whole Foods and I sure as hell was going to finish.

You know, as much as I accept that autism is a big part of my life, I am human and it is ridiculously frustrating to have your child acting out on what should be a simple grocery shopping trip.  I had not asked much of M that day in terms of doing things that were out of his comfort zone, so I didn't think that a 30-minute grocery trip was out of the question for us that day.

As we stood in the pasta aisle trying to find gluten free lasagna noodles for the lasagna I'd promised B I would make (and the one I couldn't possibly have made with wheat noodles because I didn't want M to feel left out) the sweetest woman came toward me.  It was clear she'd come down that aisle specifically to find us.  With a gentle hand she reached out and touched my arm and said to me, 'You are doing such a good job.  You are a good Mom.'  My reaction was to say, 'Oh, you're going to make me cry!'  (as she was about to cry by just saying those simple words to me)  But then I thanked her profusely for her words and told her how much it meant to me that she took a moment to say that.

I have to say that I held my head much higher for the remainder of the shopping trip.  I felt calmer in my heart and I put the smile back on my face.

I don't know if that woman had a child with special needs of her own or loved someone who did.  But with a seemingly simple gesture, she turned around a bad moment and turned it into a positive one.  It probably wasn't easy for her to come and say that to me either.  You never know how people will react to things, even if they are meant to be kind.  But she took a chance on me, and I am grateful that she did.

So if you see a Mom struggling a bit with a child--special needs or not--remind her that she is doing a good job and she is a good Mom.  We could all use a little praise from time to time, and having it given at our lower points rewards us that much greater.

Friday, August 19, 2011

It's Hard To Blog When You Don't Have A Computer

Ye ole laptop was struck by a gnarly worm or some such malicious thingamabob that I was unable to figure out and I was android phone-only for about six weeks.  It sucked.  What the heck did we do before the interwebs?  Seriously?!
It's been a busy, busy summer 'round here, and frankly, I'm tired of leaving my house.
The creative juices are not quite flowing yet for me to jump back into full blog-irific hilarity, so I'll give you a brief M run-down:
-Confirmed diagnosis of hypoparathyroid disease (a calcium disorder)
-An ACTH stimulation test showed that he tested negative for Addison's Disease, though because he has some symptoms of the disorder (belly pain, low blood pressure, low cortisol and hypoparathyroid disease) we may test again in about a year.
-Didn't like the resident doctor we were seeing at UCSF or her inability to read a chart and see what we'd already been doing with no results, so I switched to Stanford.  Score one for Mom's good judgment.  New resident is a dream; attentive, enthusiastic, and--gasp--actually prescribing treatment that is delivering results!  Calcium number is in the 'much better' range.
-M, unfortunately, has to endure weekly blood draws in order to constantly gauge calcium, phosphorous, and various other levels that my brain can't currently recall.  Thank you, emla cream.  My boy is brave little champ.
-Genetics appointment coming up on September 6th.  We've done very basic genetic testing twice before (the last being over two  years ago), but now that we have a bit more information on the endocrine front, they are going to do some more specific testing.  Our endocrinologist has a strong hunch that he may be diagnosed with DiGeorge Syndrome, but we will see.  It would make sense in many ways.  If any of you reading this have experience with DiGeorge, I would very much like to connect with you!!  Please leave a comment for me, if you would.

Enjoy the last few days of summer to those who haven't started school yet!

Thursday, June 30, 2011

One of Those Things

Today I had my yearly 'womanly' exam.  Ahem.  You ladies know just how exciting those are when they roll around each year.  Anyhow, I really like the female doctor I have seen for the past three years, but having not gone through a pregnancy with her, she doesn't really remember much about me from June to June each year.  We've talked the past couple of years about M and his disability and she has shown remarkable empathy and care toward me in return; offering up lots of encouragement and telling me that I was doing a great job.  It never felt like b.s.  She's a no-shit, genuine kinda gal from what I can read.  But this year the kids didn't come up in the conversation, so the joggling of the ol' memory to remind her I had a child with special needs didn't naturally happen.  And so, at the very end of my exam she asked me how old my kids were now.  I replied that they are seven and four to which she responded, 'I feel like that's when life really starts getting a bit easier, don't you?  At seven, they're becoming so much more self sufficient and easy to care for.'

I don't hold these types of comments from people against them. No, I simply try to tuck away that urge to let that little sound escape my mouth...the one that is mixed of sadness and a tinge of envy...and I chalk it up to another one of those things that make my new normal a little bit different from the rest of the world's.  It really is okay.  It just sometimes hurts a little more than I'd like to admit.

Sunday, June 26, 2011

Big Montana Sky

We recently returned from our yearly trek with my best friend's family to Flathead Lake in the northwestern part of Montana.  It's a great trip that always ends too soon.  (which is why the trip becomes longer every year)













The menfolk garner great pleasure from building the best fires in the pit each night, after amazing, home cooked, themed dinners, great bottles of wine...and, well, even more wine after that.















Both of our families dream of building homes on the lake one day.  We've each joked about our stash of kitchen appliances and the errant piece of furniture that has, for now, been relegated to a storage area; labeled for years to come: 'Lake House.'




We rent a pontoon boat.  We rent sea doos.  We freeze our asses off on both, and don't really care because it's that much fun to ride on a massive lake even if you're wearing uggs, winter coats, gloves, hats and scarves.








 We take a day trip to Glacier National Park and go for a walk in the freezing rain.  Because it's THAT spectacular anyway.






We yell at our kids to not run on the dock.  (okay, so that part may be more me than anyone else)










We take a whole seven days to get into the groove of traveling with children---a point we kvetch about at night with hopes it takes zero days when the kids are older.


We go to bed too late and wake up too early.

We make friends with the locals and mean it when we tell them we hope to see them next year.

A little brother laments the big brother he wished would play with him the way the two sisters do...and his Mom hopes that their frank discussions help him realize how special their bond is nonetheless.



We shop for things we don't need, and realize we forgot to pack things we did need.

We get to reunite with middle school friends we haven't seen in a decade--who live nowhere near the neighborhood, but because it's Montana, a five hour drive seems like nothing.










We have the good fortune of a couple of grown up-only nights out because a good friend back home has family in the area that is happy to babysit!











And two old friends who've changed leaps and bounds since their high school days, can talk openly about how different their parenting styles are--how different their children are, and yet still know that it is worth it to spend this invaluable time with each other summer after summer.  And every once in awhile, they might just find themselves doubled over in laughter like they used to when their lives were a bit simpler, their stomachs a bit flatter, and their ability to stay up all night a bit more fine tuned.  But make no mistake...they've still go 'it!'


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