Over-parenting at it's finest

Hi Minda (this is Isaac's teacher),
I found the cheerio bracelet in Isaac's folder today.  Would you like me to send in some gfcf cheerios for projects like this?
I know that I'm paranoid, for the record.  = )
Thanks!
Libby

Dear Libby,

I was really proud of how he asked if he could eat them instead of just eating them.  You must have worked with him for him to know to ask first.  That is great that he asks at such a young age and seems conscience about what he eats.  We told him that these were only for  play, so he didn’t even try.  You are not paranoid, I like to call it protective.  We do not use them often so if you still want to send some in feel free. 

Melinda Derby   M.A.

Okemos Public Schools

(Feeling sheepish)
Wonderful!  I am so glad he asked.  Sometimes he does and sometimes the temptation is too great.
If I find some I'll send them- even as just a snack back up.  It's hard to find gf cereal without corn in it.
Thanks for letting me know,
Libby

The doctor dilemma

Has anyone else noticed that being a mom sometimes feels like being the administrator of a corporation?  Maybe it's just my inflated sense of self-importance, but it gets the job done.  Anyway, if you know me, then you know that I've been a bit disenchanted with our pediatrician's office.  Why?  Well, they diagnosed my son with PDD-NOS and then left me feeling like this:

I wasn't feeling like this because I was shocked.  My initial spectrum research a year prior to this appointment told me that this is where Isaac landed in A-land.  I felt like this picture because they officially diagnosed him and did nothing else.  "Is there anything I should be doing?" I asked.  "Nope, you're doing great- everything you should be doing."   The question I should have asked was, "Shouldn't YOU be doing SOMETHING?"  Like referring me to a neurologist?  Like running blood tests to make sure he's getting what he needs while on this strict diet?  Like seeing what kind of at-home behavioral therapy we were using?  Like knowing more than me about this stuff?  And if you don't know more than me about this then at least have the common courtesy to not look at me like I have three heads for my kid's diet, and not lump me into your preconceived notions about moms who believe in bio-medical treatment with your condescending "warnings" about upcoming vaccines.  Don't worry, white-coat, he's getting vaccinated- just not on your schedule.

Sadly, so much of medical care today has turned into a drive thru experience.  Yes, I'll have one order of spectrum disorder with a side of nothing.  Thanks.  The only reason I trust their quick diagnosis of Isaac is because I had known it for a year before anyone said the words.  I hope to see the day when pediatric care is more than writing scripts, giving vaccines, and throwing around diagnoses with no follow up.  But I'm not holding my breath.  When I really think about it, it blows my mind that a pediatrician can have the guts to spill the beans about autism and not have the common sense, compassion, or time to ask some questions and run some tests.

Deep breath...

The good news is that I think my for-the-time-being answer is right in front of me.  I took the time to take myself to the doctor today.  I've been putting off getting my foot looked at, but my wardrobe isn't appreciating the furlough from running.  I've crossed the line from casually curvy to chubby cheeks.  Not cool.  Even more not cool was the list of things she was sending me to get x-rayed and tested for- bone spurs, gout, *cough* cholesterol *cough*.... Um, excuse me, doctor?  While you're at it, can you check my birth certificate and make sure I'm only twenty-five?  But this is what I love about my family practitioner; she errs on the side of caution.  This is the woman who obliged ordering a blood test for me during a post-tubal ligation pregnancy paranoia.  I asked if she was taking new patients and if she'd be willing to work with me on ruling out some of my pdd-nos paranoia.  She asked why I was unhappy with our current pediatrician and I told her everything I just told you.  She agreed that seeing a neurologist should be standard procedure for spectrum kids- especially ones with a family history of epilepsy.  Looks like we found Isaac's new doctor.  End of dilemma.  For now. = )

Our GFCF journey: Worth it

We tried the same approach to going gluten free as we did when getting rid of casein: a little bit at a time.  I was, of course, looking for another miraculous improvement in Isaac as a sign that completely getting rid of gluten and adding zeros to our grocery bill was worth the investment.  So when limiting gluten didn't give me the same extreme and immediate results as limiting dairy did, I was ready to bow out.  Andrew was still low-man on the totem pole at work, and I only had one cleaning job.  Let's be honest, neither of us were very keen on giving up our once-a-month date night money.  When I brought up my concerns to our OT, she urged me to keep at it for another couple months before giving up.  She explained that kids usually tended to have more of an issue with one over the other when it came to gluten and casein.  She said we probably wouldn't see an immediate dramatic result of getting rid of gluten, but that it might still be worth doing.

During this time I started reading The Autism & ADHD Diet by Barrie Silberberg- which I REALLY recommend.  Anyway, Silberberg talked about how some children actually have an acute sensitivity to gluten, casein, and other foods and that small traces of these foods can make or break the effectiveness of the diet for them.  This got me to stop dabbling in gluten free food with Isaac and just completely and strictly eliminate gluten.  He still had enough alarming behavior left to be concerned, and I wanted (and still want) to do everything I could for him to be able to function at full capacity.  These behaviors included a continuation of very rigid play to the exclusion of imaginative play, limited speech, and a tendency to be stuck in his own world.

We had given him a wooden train set for his birthday after seeing how glued he became to the ones at the library.  It was the single best and worst gift idea ever.  He would play with it for hours (yes, even 4 hours) at a time.  He would organize two separate trains in specific color patterns and push them clockwise around the track.  He always got to be Thomas and push the blue and red train.  I always had to be Percy and push the green, gold/yellow themed train.  Well, everyone knows that Percy sucks.  He's just not as cool as Thomas.  He whines.  I was sick of being Percy, but most of all I was sick of being dictated to by my almost non-verbal two year old as to the exact way I was to play with the train.  If I or anyone challenged Isaac's track rules he would meltdown or hit us.  It was like having a two year old, angry, drunk version of Sir Topham Hatt living with us.  We had to prep our babysitters as if they were about to enter into a hostage situation.  They had to know the rules of the game so as not to get taken out- literally.  Our existence at home was limited to trains, books, and movies.  He had little other interests during this time.

A few weeks or so after completely removing gluten from his diet I finally started noticing some worthwhile changes in Isaac.  He was talking more and spending less time in his own little world.  He could handle challenges to his track rules, and he was expanding his interests.  One surprise imaginative play episode stands out in my mind as the point in which I knew we had turned a corner.  Isaac and I were in his bedroom when he initiated a spontaneous fishing for snakes game.  He told me to listen  and then made a hissing noise.  He said there was a snake under his bed and that we had to catch it.  He made a makeshift fishing pole of random things in his room.  We spent the next half hour fishing for snakes (daddy's ties) from under his bed.  I remember how clear his language was during all of this and how theatrical he was every time he caught a snake.  It was like watching the cobwebs clear from his mind right in front of my eyes.

I knew in that moment that Isaac would be gluten free forever- even if it meant some major sacrifices.  Daddy was a little more skeptical and reluctant- hey, he's a scientist.  So I volunteered my spending money to cover the extra food expenses, and then ended up getting a couple more cleaning jobs just to even things out.  It was worth it.  More than worth it.

For those thinking about this diet, let me "warn" you about a few things:

1) Making an extreme diet change can sometimes compromise the immune system for a little while.  After starting the gfcf, low yeast, and Feingold's diet Isaac had a 5 week period of being sick off an on with ear infections, roseola, and other common viruses.  This was very discouraging and made me doubt whether or not the diet was worth it.  Thank God our OT was there for support.  We got through the 5 weeks and then things improved.
2) Gluten free foods that Isaac refused in the beginning are some of his favorites now.  Try, try, and try again.  Just because your kid might not like the taste of seed crackers now doesn't mean that a few months down the road he won't.  Once you find some favorites it pays to order them in bulk off of amazon.com and get free shipping.
3) Gluten is hidden in LOTS of foods so do your research.  Did you know that oatmeal is not gluten free?  I didn't either.  Bob's Red Mill and Eco-Planet make great gf options.

A rare and wonderful day

Today was Isaac's first day back at school after being home sick for two days.  He got up once in the night (2am), so I had to wake the lazy bones up at 8am to get ready for school.  This is never my preference as that only leaves us a very small window of time to get through our morning routine.  I was expecting a kicking, whining fight as I got him dressed while he was still eating his breakfast.  Nope, complete cooperation.  "Isaac we gotta get ready for school.  You have gym class today! (insert overly-cheery voice)"
"Yeah school! Woohoo!"  Insert me trying to hide my shocked look.

I put his shoes on.  He put his coat on.  I handed him his backpack and he earnestly tried to put it on himself before asking, "Help my backpack, please mommy?"  Insert raised eyebrows.  "Yes, since you asked so nicely..."  I bustle around trying to finish getting myself ready while he picks up some friends, little toy animals, for the ride to school.  "Look mommy, it's a box!  Thank you for the box, mommy."  He is holding a little tin box we let him have to transport his friends with.  "You're welcome..."  Again, who is this kid?  He finds a few more strays for the ride and then asks me in complete question form to put both the box and the strays in his backpack. And then says "thank you".  What did I feed this kid?

All the way to school he initiated conversation using decent sentences and pointed out things he saw out his window.  He answered most of my questions and gave me directions as to when to stop the car and which way to go to school.  It was surreal.  I got to ride to school with a true three year old.  MY three year old.


When we got to school I told Miss Minda that she was in for a good day.  He was in a remarkably good mood and talking up a storm.  She said that she's noticed an increase in his speech too- that once he gets through his script from movies, tv shows, and books he gets on topic.  I know I'm a dork, but this makes me all the more excited for the upcoming parent/teacher conferences.


Then Isaac and I arrived home and upon inspection of his school folder I found this:

OK, let me first say that Isaac is very good at sharing at home, within his comfort zone.  School is outside of his comfort zone so this is a big deal.  He has never received anything like this from school before.  Second, his report from school had checks only next to "I'm working on this" for both large and small group activities today.  This means he only needed one or two verbal prompts instead of the usual three or more.  *Fist pump*  When I brought out the teddy bear certificate to show him I asked him if he shared with Kara today and he answered, "Yes!  I need measuring tape (scotch tape), please.  Hang it up, please."
"Oh, do you want me to hang it on the front door?"
"YES!"
Here it is:

The rest of the afternoon has been sprinkled with more good communication and complete sentences.  It has been a rare and wonderful day.



Meanwhile, our other developmentally disabled child, Shilo the dog, is having a not-so-rare and un-wonderful day.  If I wasn't in such a good mood, all that mud he tracked in today would not be appreciated.  I am choosing to view this as a sign of spring, but he's definitely not getting a teddy bear certificate anytime soon.

Sensory rooms: play rooms with purpose - Lansing Autism & Parenting | Examiner.com

Sensory rooms: play rooms with purpose - Lansing Autism & Parenting | Examiner.com

This is an article and slide show on Isaac's sensory room.

The beginning of our GFCF journey: Bye bye, dairy! Hellooo, sleep.

During our second meeting with Early On, they asked if Isaac had any favorite foods that he tended toward.  I confessed that if I let him, Isaac would forgo eating and only drink cow's milk (he was two years old then).  I remember casually commenting that it seemed like he had an uncanny ability to convert milk into sugar, because  after he drank it he would buzz around like a bee.  This is a cute way of saying he would literally run clockwise circles around our ground level for hours.  I was a lot thinner back then because of this.  I was also exhausted.

My EO workers kindly told me that my observation was pretty much dead on, and then warned me that when we met with the OT, Paula Johnson, in two weeks she would tell me to cut out dairy and possibly gluten.  Panic, skepticism, and desperation were the soup d'jour that day.  Looking for any excuse not to cut out dairy- my meal "helper"- I called our pediatrician to get his opinion.  How would I get Isaac to eat vegetables without sprinkling shredded cheese on them?  But a near sleepless night with a hyper two year old and an "all clear" from the head of MSU Pediatrics sparked a worth-a-try attitude in me.

To begin, we decided to try cutting out dairy for the second half of the day.  I was desperate for a decent night of sleep that didn't depend on a two hour long dance party with Isaac beforehand.  To my skeptical, Jenny McCarthy snubbing surprise, it worked.  Isaac started sleeping better immediately.  So we eased into fully deleting dairy with some trial and error over the following weeks.  Two weeks later, at our first appointment with Paula, he was already remarkably different- less hyper, sleeping better, and quite frankly seeming a lot less autistic.  Over a year later, studies are showing "milk sugar" to be a menace to more than just the autism community.  Check out this interesting article that I found last night:  www.huffingtonpost.com/dr-mark-hyman/do-milk-and-sugar-cause-a_b_822163.html  I definitely thought about this as I ate my bowl of strawberry frosted mini-wheats and 1/2% milk this morning.

Today's reading and research

When I found out that I was pregnant with Isaac I had romantic dreams of becoming a stay at home mom and stretching out on the couch with a Jane Austen novel while he napped or was at school.  I would sip tea and perfect the British accent inside my head.  That's happened three times in the past two years.  Well, four if you count how many just-for-fun books I've started and not finished- or my record-fast reading of the Harry Potter series.  The past year has been especially filled up with research.  I don't think I could take Dr. Bob Sears quite as seriously if I read The Autism Book using my British head voice and picturing him to look like Colin Firth, but it might make it more fun.

While I wouldn't consider The Autism Book by Bob Sears to be a fun read- like All I Can Handle, it is anything but dry.  I was really stalling to start this book after Kim's, but I finally plopped myself on the couch and read through the first few chapters today- sans the British accent.  My initial thoughts are: Where the hell was this book two years ago?  Oh, not published yet.  (Thanks, a lot, Dr. Sears!)  I could have saved myself a lot of late night obsessive internet research and read a lot more Jane Austen if this book had been out when my gut first started telling me that something was off with Isaac.  It is succinct, accessible, even interesting.  Dr. Bob answers the questions that all parents with developmentally delayed children have in their heads, but are either too afraid to ask, have asked and not received clear answers, or don't know to ask because they are still living in the land of denial.  One point that he makes, which I love, is that any developmental delay should be addressed immediately even if autism isn't an immediate concern, because early intervention (through therapies) can keep a minor delay or regression from turning into a bigger one.

Waiting for a precise diagnosis or for a child to "catch up" on their own is lost time that could be put to better use.  It drives me crazy when I think about how I waited 3 months before calling Early On, as suggested by our pediatrician, because I was waiting for Isaac to do just that.  Well meaning relatives and friends will sometimes inadvertently make you doubt your gut feelings with sweeping statements like, "Oh, kids do that. He'll catch up. Some kids are just late bloomers..."  Take it from a mom who knows; Always trust your gut and err on the side of caution.  A little "unnecessary" speech therapy never hurt anyone.  Likewise, changing a child's diet is a lot easier to do when they are two than when they are twelve.  What do you have to lose?  It could be nothing or it could be autism.  Or in our case, it ended up being PDD-NOS, but it could have been full blown regressive autism had I not finally given into my reasonable paranoia.  All this to say, I recommend Dr. Bob's book to anyone concerned about any degree of delay or regression in their child even if you aren't concerned about autism, because he goes over the science behind what could be causing that delay and how to help treat it.  The thing I love about Dr. Bob Sears?  No, he doesn't look like Colin Firth, but he is a REAL doctor that actually sees patients, instead of a talking head with nothing to back up his claims.

In other news, I found this http://drhyman.com/breakthrough-discovery-on-the-causes-of-autism-2730/  interesting article today via a perusal of The Huffington Post.  Dr. Mark Hyman is a practicing physician that writes for HuffPo.  This article is from his own site.
That makes up today's reading.  I believe I'll go to bed now and dream about corsets and Colin Firth.  Happy Valentine's Day!

FREE 2011 AutismOne Conference - Lansing Autism & Parenting | Examiner.com

FREE 2011 AutismOne Conference - Lansing Autism & Parenting | Examiner.com

It's not all fun and games, but SOME of it is!

I often joke that having a kid with sensory issues is a good excuse for buying cool things.  It's how I justify having a roller slide, mini trampoline, and hanging nest swing in my basement.  However, one inexpensive sensory toy that gets a lot of use in our house is the BEAN BOX.  Bum, bum, buuummm!!!!!  I. love. this.  Running his hands through the pinto beans has an instant calming effect on Isaac.  Andrew or I will spend several minutes pouring beans from our hands into Isaac's- as pictured above.  I imagine it to be a mini replica of what it's like to stand next to Niagara Falls for someone who is on the spectrum, but better because they actually get to touch it.  Every time we do this with Isaac he is immediately smiley.  Our wonderful OT, Paula Johnson, brought a smaller bean box to our house for one appointment.  Isaac took to it like a fish to water and was soon trying to fit his entire body into her shoebox sized bean box.  I remembered that I had this Sterilite under-the-bed storage box (with lid) sitting empty under my bed.  I bought several pounds (maybe 15) of raw pinto beans at Meijer to fill it.  I then added little cars, alphabet magnets, number magnets, plastic bugs and animals. 

It's fun to treasure hunt in the beans or push, pour, and pet them.  But mommy and Isaac's favorite bean box game is "More tea, Buzz?" in which our Buzz Lightyear doll holds a tin tea cup and Isaac serves him tea (beans) with a bug in it.  Buzz, being disgusted, throws the tea out and demands more tea- without bugs.  This gets lots of laughs.  And yes, I have perfected my Buzz impersonation right down to calling my tea server "soldier".  I really suggest the bean box for some sensory fun- especially in winter when it's hard to get out.

Thoughts on how: A long and boring post

This year at Christmas, my son's great grandfather (who we don't see but twice a year) could not get over the fact that Isaac would actually look at him, talk to him, and play with him.  He was delighted.  I thought this was as good of a time as any to break the news that we had moved out of the land of "sensory issues" to the land of autism at Isaac's three year check up in the fall.  I tend to be blunt- so I went with my usual tactic; spewing it.

"Well, papa, that's because Isaac has PDD-NOS... which means he has many, but not all characteristics of autism. He is not classically Autistic, or Aspergers, or has Rett syndrome.  And last time you saw him he probably was still adjusting to his new diet and feeling "off"." Or just plain beginning his recovery out of the land of the lost.*
Great grandma matched my bluntness with the question that followed: "Well, how did he get it?!"

Good question, grandma!  I've driven myself crazy with this question, but I think I've finally come to a hypothesis that I can live with using my trusty scientific methods- obsessing, reflecting, and researching.  Of course, we'll never really know HOW until autism research becomes more of a priority in this country.  But here are some thoughts from one mom with one experience.  I've come to the conclusion that just as all people on the spectrum are different, the causes behind them ending up there might be just as vast.

Let's start with my pregnancy, or as I like to call it- a trip to the third circle of hell where Dante himself paddled me around in his pontoon while I puked off the side.  I had what the medical professionals at Buffalo Women and Children's Hospital called "a true case of Hyperemesis Gravidarum".  I was only able to eat or drink anything a handful of times from six weeks pregnant to 5.5 months pregnant.  I threw up between 6 and 20 times per day.  Since there was no food or liquid in my stomach I usually just threw up blood and acid.  The doctor overseeing my midwife kept shoving Zofran down my throat despite it's uselessness and wasn't batting an eye at how many times I had to visit the ER (13 to be exact, hospitalized 4 times)- except when it caused him to leave his very comfy home in winter during the wee hours of the morning.  I'd like to send him my postpartum dental bill and ask him to pick up the tab for the 14 fillings I had to get and the re-bonding work that I desperately need done.  Hell, I'm going to need dentures.  My teeth hurt now while I'm sitting here.  Yes, solid gold dentures if you please, Dr. K.

My midwife was not much better.  Despite telling her that Hyperemesis Gravidarum ran in the family and that I knew that it wasn't going away anytime soon, she refused to put me on a PICC line until I was 12 weeks pregnant.  This meant that I had a solid six weeks of starvation and dehydration (minus when I was in the ER).  No big deal- it's only the part of the pregnancy when nutrition is MOST VITAL.  What's more romantic than getting a PICC put in on Valentine's day followed by a week long stay in the hospital?  I can't think of a damn thing, and apparently either could my midwife.  Alright, here is where I try to make a long story short.  The next few months were filled with me receiving all nutrition, hydration, and medication intravenously.  Note, there are no FDA approved medications for treating HG.  When we finally went to see specialists in Buffalo, NY to get me some relief they found a combo of about 5 meds that made me not puke all the time.  I hated taking all of those and not knowing what they were doing to my unborn child, but my options were very clearly either medication, abortion, or dying of starvation and dehydration.  We joked that Isaac would probably come out with webbed feet from all the meds, but that he'd be captain of the swim team at least. Ha!

Fast forward to labor and delivery in Michigan.  Isaac came out not with webbed feet, but a blue face due to the cord being wrapped around his neck and wrist that he had held up by his face.  Interestingly enough, he was in that exact same position at his 20 week high-def ultrasound.  It was a good half hour before they'd even let me hold him.  It was several hours before they'd bring him to my room.  They said he was "stressed out" from the cord incident.  Some research I've done has said that some brain damage could have taken place during this time, and that it could contribute to his current "neurological disorder".

The fact is, while some parents state that they can find no link to their family history and their child's autism, it is worth noting that the Loucks' and the Chambers' are no strangers to neurological issues.  I won't outline all of them for the sake of time.  However, when my husband and I discuss the question of "how", we usually end up morbidly joking that Isaac really didn't stand a chance at being typical- pregnancy complications aside.  Both Andrew and I can clearly recall having some extreme sensory issues as children, and he would be the first to admit that he's still pretty quirky today.  Even our Early On worker drew a connection between how similar Andrew and Isaac are in group settings- right down to their trouble making eye contact.  (Yep, we talked about you behind your back- and we think you're weird.)  And as much as I'd love to fully blame his genes for the possible contribution to Isaac's spectrum disorder, I would be remiss if I didn't tell you that I have an Obsessive Compulsive Disorder involving touch and numbers that I've been able to get under control to the point where you wouldn't even know that if I hadn't just told the whole online community.  Meh, now you know.  I will say this- neither Andrew or I had any developmental regressions or delays despite our other quirks.

Isaac was not quite as lucky.  He seemed to be developing normally enough until about 20 months of age.  Although, looking back he had some mini-markers of autism even as a baby.  We now know that many children on the spectrum suffer from reflux and yeast issues.  Isaac had both almost from birth.  He was one big spitting up, thrush battle.  Just before he turned one he randomly stopped making eye contact with people he used to love.  He would even hold his little hand up to his eyes so that he didn't have to look at them- his face squinted and uncomfortable like he was trying to avoid the sun.  We thought it was a phase.  Just like his read every book we own in one sitting, and then start again phase.  Just like his remarkable sorting, organizing, and lining things up phase.  Still, he was developmentally "on track".  He spoke the right amount of words when he was supposed to.  His motor skills were pretty good.  He walked on time.  I even have a list of short sentences he said at 19 months old.  I was so excited about how smart my child was that I recorded it.  That's where the proud mommy jotting left off.  At twenty months he just stopped talking.  No "mama" or "dada".  Nothing.  For months.  But there were plenty of other weird things going on to fill that silence, but that's for another post.

When I finally had him evaluated by Early On- three months after it being recommended to me by my doctor, more questions came up.  Did he have an illness around the time of regression? No.  Were you traveling a lot?  Yes.  To places that speak other languages?  No.  Was it around the time of his vaccinations?  I don't know.  I was so busy, exhausted, and worried that I didn't write anything down.  After all, who wants to record, "Well, he stopped talking.  He doesn't even say our names.  Oh, he finally started talking again.  He's two now.  But he can't pronounce some words he used to say perfectly.  He's getting weirder by the day..." ?
I didn't.  But now I wish I did.  I have gaps that can only be filled with gut feelings, and when you are married to a scientist anything short of empirical data does. not. count.  Can I confidently say that I think vaccines played a role in Isaac's huge regression?  No.  Am I skeptical of them?  Yes.  Just like Dr. K shoving Zofran down my throat because the pharm rep buys his office lunch, I think we need to weary of a business that's becoming a cash cow.  I mean, since when do we take the government's word on anything?  I guess since the alternative brings us fear.

So how does this woman compromise with her scientist husband?  We've agreed on an alternative vaccine schedule and to omit any "extra" vaccines like those for the flu, influenza, and random illnesses that he'd only contract from exotic vacations that we can't afford to take.  However, I totally respect those who have chose to forgo any more vaccines due to having more empirical evidence just as I respect my friend and neighbor who does not believe his son's autism is treatable.  How can you argue with a spectrum of experiences?  My thoughts are that Isaac's PDD-NOS is a culmination of hereditary, environmental, and possibly man-made causes.  I know that sounds less like a hypothesis and more like a big "I don't know", but thinking through these things has given me some peace of mind.  I dare you to argue with that.







*P.S. For the record: I do believe that it is possible, in some cases, to recover from autism or autistic characteristics.  I know that it offends some people when I say this because it makes autism sound like a disease rather than a disorder, but as a mom I have to believe it and I have to strive for it.  If I didn't believe this my son might still be barely talking, not sleeping, and unable to connect with people.  I will not apologize for or retract or re-word my above statement, but you are more than welcome to disagree with me

A non-precise GFCF recipe: mac-n-cheese

As some of you know, I do not cook with recipes.  I can't stand following directions.  I think it stems from my problem with authority in general.  I don't like to be told what to do- even by a cook book.  I own cook books.  They come in handy for "idea gathering", but I leave the actual use of them to the scientist, Andrew.  He's under the impression that not following a recipe can lead to a natural disaster.  You're right, honey!  You better save the world and make dinner tonight.  Could you have it on the table by 5?  Thanks...

When we first started cooking gfcf for Isaac, my initial concern was "...but don't American kids DIE if they don't eat mac-n-cheese at least once every other week?"  Nope.  Just the moms do, because it is sooo easy to get them to eat it.

It took a few tries, but I finally found the right combination and unlocked the secret to GOOD gfcf mac-n-cheese.  The ingredients and steps will be listed below.  There will not be precise measurements as I like to leave room for creative license.

A glob of Earth Balance Spread
A spoon-sized dash of your favorite GF flour or starch powder

In a pan, make a roux with these two ingredients.  This means mix them together over medium heat.

Add a handful of Daiya Vegan Cheese Shreds in Cheddar
Add a large splash of your favorite milk alternative, ours is S.O. Delicious Original Coconut Milk

Mix all ingredients together in pan until they are a creamy consistency.  If you like it thicker add more cheese.  Thinner, add more milk.
Pour over cooked Tinkyada Brown Rice Pasta and stir.

Hint:  You can add vegetables or meat to this if you have a child that isn't against different foods mixing.  I sometimes hide broccoli or pureed winter squash in ours.

Enjoy!

Just Read It- A personal and opinionated review

http://www.kimstagliano.com/book.html

 I unfortunately finished Kim Stagliano's book last night.  I say "unfortunately" because it was one of those books that I didn't want to end.  I turned the last page of the final chapter eager to dig into another only to find the glossary and index.  It was like hanging up the phone after one of the best conversations of my life.  One of those rare conversations where you feel like the person on the other end actually "gets you".  It was in a word, satisfying.  I laughed, sighed, and was tempted to cry as I peered into a life in many ways similar to mine.  Who doesn't like to know they aren't the only one with a quirky kid, marriage bumps in the road (or pot-holes in our case...love you, Andrew), or even a gay sibling (or two...love you, Jess and Brie)?  Reading this book is like sitting with a friend over coffee and solving the world's problems- except that at the end of it you actually have added some more tools to your belt instead of just coffee cake to your waist-line.

Kim (yes, I like to pretend we are on a first name basis) has all the wisdom of someone swimming in the world of autism for over a decade.  She is funny, opinionated, passionate, and has the intelligence to back it up.  I am grateful for her honesty about life in A-land, and am feeling a spark of renewed energy to continue on our journey of finding answers for Isaac and passing on resources to others in our boat.  Keep on writing, Kim, but most of all keep on being you as you have so finely mastered.  This book is a must-read for everyone, not just those within the autism community.  Just read it.

First Words Project: A free opportunity - Lansing Autism & Parenting | Examiner.com

First Words Project: A free opportunity - Lansing Autism & Parenting | Examiner.com

Preaching, pizza, and poop

So I may or may not have BURST into tears today.  In church.  In the second row.  In front of everyone.  I don't typically cry in public- and this wasn't a case of the misties.  This was suck in my breath- snot oozing- torso shaking crying.  I did not have a tissue. Yes, the one time I choose to sit in the front away from any sort of exit or the box of tissues next to the organ.    One of our retired revs preached today, and he told a story about him mimicking a guy in seminary who today would have been most definitely diagnosed as autistic.  I'm really not doing Fred's storytelling abilities justice here, but let's just say it affected me.  It was like a wave of relief and reality hit me at the same time and I couldn't breathe.  Someone was talking about something I think about everyday.  From the pulpit.  In that moment I felt like I could finally stop holding my breath and pretending that everything is ok.  Don't get me wrong,  I am so grateful to be where we are now with Isaac compared to where we were.  But things still aren't ok.  There are some things about daily life with a kid on the spectrum that just break your heart as a parent. 

Isaac requested pizza for dinner tonight, so I made him some homemade gfcf pizza.  When he was almost done with the first piece I asked him if it was good.  His reply?  "Scary dragon!"  Ok, let's try rephrasing the question.  "Is your pizza yummy?"  "Scary dragon!"  Sigh...looks like someone is on a different channel than the one I'm watching.  One last attempt..."Do you like your pizza?!" My finger is pointing at the plate.  I'm even talking slowly and loudly- as if he's deaf.  "Scary dragon, mommy!"  "Yes, the painting of the dragon on the wall on Bob the Builder was scary. Yep.  You're right."  Good thing I caught that scene in the Bob the Builder movie today or I would really have no idea what he was referring to.  I had to walk away at that point.  It's not just that it's frustrating when his mind is somewhere else- it kind of hurts.  It made me realize why getting on the boat is so hard for some people.  No one wants to look at their baby and think "this isn't quite what I pictured this would be like."  It makes you feel guilty to admit that- even if you have a right to feel that way.  What should be a really simple exchange of words with my 3.5 year old is anything but.  He can't tell me that he likes his pizza because he's fixated on one scene from a show he watched two hours earlier.

Later we were doing bed time routine.  We read books and then I ushered him into the bathroom to brush his teeth and go potty one last time.  Not according to my plan Isaac informs me that he has to poop.  That's great, buddy, squeeze it out.  We're a little behind schedule tonight.  "Small poop, mommy. Small poop, mommy!" 
"Yes, I see the small poop.  Are you done?" 
"Small poop!  Small poop! Small poop!"  
"Yes, I see the small poop.  Do you need a wipe?"
"Small poop, mommy."
"Yes.  It's a small poop.  Are you all done?"  Mommy's a little tired.  She bawled in church today. Cleaned the house with daddy.  Made an impressive cajun fish and linguine with clam sauce dinner in addition to the pizza you can't talk about.  And would like to sit down in silence and read. 
"Nope.  I'm POOPING."
"Ok.  Let me know when you're done."  I walk out of the room for 1.5 minutes to give him some privacy.  I walk back in to find him digging poop out of his butt with his pointer finger- unfazed.  It is smeared all over his butt.  Looks like you're getting that bath you wanted.

Just another day in the Loucks house. = )

Get on the boat

I was the first one to get on the boat when it came to addressing Isaac's issues.  That's what we used to call them at least.  "Sensory issues" or "auditory issues" or "food issues"- but all those issues add up to one thing; my kid is different.  He's not different just because he can't eat gluten and dairy or apples and bananas.  He's not different just because he can't go in the basement of Impressions 5 Science Museum for the model train show because the lights are too dim, the floor is too slanted, and the people walking upstairs sound like a herd of stampeding elephants to him (and the combo of the three give him a panic attack).  He's not just "quirky" because he walks around saying "gitta gitta gitta" or "ticka ticka ticka" and quoting movies.  Isaac is different because he is autistic.  Now he might be "a little" autistic or "mildly" autistic, but the fact is that he has more than his big toe on the spectrum.  Anyone who spends a day with Isaac can tell you that we're at least up to our ankles in autism.  I understand why people are reluctant to give a three year old a label, but I'm realizing more and more that calling this anything but what it is isn't helping anyone to get on the boat with me and see just how far we are from land.

In this metaphor land is "normal".  Lately I feel like Isaac and I are in this boat called PDD-NOS and we keep circling land.  I'm finding the boat to be a bit lonely, and I think we're running out of supplies.  We have weeks where he seems so close to typical that I can almost convince myself that he'll grow out of his quirks.  But then we'll have weeks like this one- where he got a lick of some crumbs and chocolate and we're back to the undeniable truth.  You don't grow out of autism.  You treat it.  And if you get real lucky and find the right combo of things that work for your child you might even be able to lose the label.  Treating it takes a lot of research, a lot of time, and a good dose of honesty- especially if you don't want to end up in the boat alone.

I think I've been pretty open about the fact that Isaac is different, but I don't think I've been completely honest with what that means and what it looks like.  That's partially because I tend to be a private person in some respects, and partially because what's different about Isaac is normal to me.  I honestly sometimes forget what a typical kid is really like until I chat up a pre-schooler at play group or listen to other moms' stories when we're out to dinner.  That's when I find that I censor things and only talk about the cute things he does and the progress he's made.  I don't tell you that he still purposely smears food on his face just for the way it feels.

But I found myself being a little more honest today.  I don't know if I just felt it was time, or if reading Kim Stagliano's book is making me grow a pair.  I was at an elder's retreat for church.  We were discussing how to make families with kids feel more welcome during the church service.  Well meaning members had mentioned a few too many times that we have a nursery in the basement to those with restless babies and toddlers.  More than a few people craned their neck to stare down a pint-sized distraction.  I've been the mom with the kid who refuses to stay in the nursery.  You can't really concentrate on the sermon when you can still hear your kid screaming for you from a different floor in a very large church building.  Someone from the group made the comment that "well, they don't like to leave them down there when they're crying, but nine times out of ten the kids stop crying once their parents leave anyway."  I don't know why, but the way she made the whole thing sound so easy-as-pie annoyed me.  I felt my hand shoot up and heard my voice come out a little louder than I intended.  I found myself saying something like this (and I'm paraphrasing):

                                        "I'm sorry, I don't agree.  My son is on the autism spectrum and I honestly have anxiety over the day he ages out of the church nursery.  He has echoalia which means he'll echo anything Pastor Margie says that catches his ear.  Also, he talks at inappropriate times and doesn't know that it's a problem or how to stop.  If something Margie says reminds him of a scene from one of his movies, he'll just start quoting it or talking about it- sometimes repetitively.  And if I got looks for him fussing when he was three months old, what kind of looks am I going to get when he is naming every color crayon in his activity bag over and over and over?  Also, getting used to a nursery worker is a big deal.  It took Isaac 1.5 years to get comfortable with Terry.  She left and Linda came.  It took him 2 months before he'd let me leave him with her.  So maybe we should give people a little space to do what's right for them and their kids.  If you make kids a distraction then they'll be a distraction, but if you focus on what you're in church for- they won't be." 

 

Saying the first line of this rant made me be honest with myself.  Most people in that room had no idea that anything was wrong with Isaac.  That's because on Sundays we shuttle in late and make a beeline for the door directly after.  That way we miss the crowd.  We have a system and we do the same thing every week.  Everything I said above is true.  I DO have anxiety about the day he has to sit in church with me.  I DO have anxiety about whether or not he'll be able to go to Sunday school next year with all the other four year-olds.  Sunday school teachers just typically aren't equipped for how to handle autism in all its dysfunctional glory.   It's being honest with myself about the things I worry about that makes me realize that the he'll-be-fine sugar that I frost everything with really tastes more like bull-crap.  I need to keep telling people the truth- even if it means using the 'a' word, because it's the only way they are going to get on the boat and help us point this thing toward land.  And let me tell you, I could definitely use the help.

MSU Community Music School has a lot to offer special needs kids - Lansing Autism & Parenting | Examiner.com

MSU Community Music School has a lot to offer special needs kids - Lansing Autism & Parenting | Examiner.com

Coffee cups, crumbs, and report cards

What do these three things have in common?  They are the three things giving me a good case of the mommy guilt this week.  I smooshed some seemingly empty cereal boxes on the floor so that they'd fit in the recycling box better, and didn't notice a small pile of cereal crumbs left behind.  I found Isaac in the kitchen eating the crumbs of the gluten filled cereal.  Later that day I forgot to put my "empty" cafe mocha mug in the sink and left it on the couch end table instead.  I found him licking the rest of the milk-chocolate out of the bottom.  Two strikes, Libby!  Still, I tried not to make too much of it.  It was only crumbs and enough chocolate to cover his tongue- maybe nothing would happen.  Twenty-four hours later we were struggling with communication and hearing an increase in jibberish and repetitive language that is still continuing today.  Also, there is a rash all over his bottom.  I'm really grateful for two snow days in a row right now, because I hate sending him to school with a diet infraction and not knowing how he's going to react to other kids.  He can be sensory defensive when he's feeling "off", and that could mean some poor kid gets a good pinch, smack, or bite for crossing a line with Isaac.  Still, he's been pretty good here at home, but home is his safe place.  We've been enjoying some relaxing play time, reading, valentine making, and decent home cooked meals for once.  I miss this guy when we're running in eight million directions to school, work, and meetings.  And I'm realizing just how fast he's growing up.  Too fast.
Isaac received his first report card from school this week.  It was a basic overview of how he's been doing with their routine, curriculum, and basic pre-school markers.  Outwardly, I took it with a grain of salt as they only see him three hours a day.  Inwardly, I obsessed a little.  "What does she mean his participating in imaginative play "needs attention"?  All he does is imaginatively play at home."  The other "needs attention" marks didn't surprise me, rather they reminded me that we have more work to do.  Lots of intentional work.  Work on answering questions of all types and understanding vocab.  Work on some fine motor things like grasping crayons properly.  Our goal is that he can function in a typical kindergarten setting when the time comes.  We're realizing that we might need a little help getting to this goal and are thinking about consulting with a Defeat Autism Now! doctor in the area.  I feel like there are some things I'm missing when it comes to his diet, and researching it on my own is getting overwhelming.  There is SO much information out there.  Feeling lost, I emailed Kim Stagliano last night to get her opinion on autism doctors and vaccines, and she emailed me back this morning.  She said DAN! doctors can be helpful and to read Robert Sears book about vaccine schedules and then have a "frank" talk with my pediatrician about it.  I was very impressed that she even wrote me back- and so quickly.  So this is where we go from here.  The worth-a-try attitude hasn't failed me yet, so I guess I'll keep on with it.