Weight Loss Wednesday: Dieting and the Special Needs Mom

Welcome to a new series I call "Weight Loss Wednesdays".  As I start Weight Watchers again, I figured it would be a good time to chronicle my attempts at weight loss here on my blog.  I'll also post my current weight loss stats, both to show honesty with the successes and struggles, but to also help me be accountable to everyone out there.  How's that for motivation?

This week's stats are:

Starting weight: 180 lbs. / Goal weight:  135 lbs. / Current weight: 176.8 lbs.

As with every aspect of our lives, autism is something we have to consider.  Why with weight loss, you may ask?  Well, for multiple reasons.  One, autism causes enough stress on our house, so I don't take lightly any decision to add additional stress.  Second, weight loss can cost money.  We don't take lightly any decision to divert funds to something other than Jack's care.  Third, we have to consider whether we have time to put into weight loss when we have a packed schedule as it is.

I came to a realization recently when I had a small bout of pneumonia; I need to take care of myself, not just for me, but for Jack, too.  Jack requires a lot of care.  He will for years to come.  I need to stay healthy in order to support him.  If weight loss helps me stay a bit healthier, then it's work the time, money, and stress.

I am incorporating some things into my second go-round with Weight Watchers that will (hopefully) help me manage both Jack's schedule and my waistline:

1. Packaged breakfasts:  Kroger sells breakfast sandwiches with turkey sausage and Canadian bacon that are low-calorie and delicious.  I've also restocked on VitaTops, which are all kinds of awesome.
2. WW Online:  Before when I did WW, I went to meetings.  Now, I do it online.  That way, I don't have to fit a meeting into my busy schedule.  Meetings always creeped me out, anyway.  I felt nervous in front of all of those people.
3. The exercise bike:  I heart the stationary bike.  Seriously.  I can ride and watch TV and earn activity points.  Sweet.
4. Skinny Girl Margaritas:  Because all special needs Moms occasionally need something a little stronger than water.  Skinny Girl Margaritas are a whopping 1 point for 6 oz. of tequila-spiked lime goodness.  That's enough to make me cry tears of joy.

I'm one week in and so far I've done okay.  No going crazy with a whole sheet cake or gallon of ice cream.  I know that it won't be easy this go-round, but it's something I need to do for me and my son.  He deserves the best, healthiest Mom he can get.

Any words of advice as I embark on a weight loss journey?

The One in Which We Love Shiny Things

We all love shiny things.  Diamonds are a girl's best friend, right?

Jack's got a new obsession - silverware.  Luckily, he's not going for the knives or forks.  It's the spoons he covets.

Call it a stim or just a new fixation, but Jack's been getting into passing spoons, or door knobs, or anything else particularly shiny, back and forth in front of his face lately.  It seems like if he doesn't have one of his Pez dispensers in his hand, he's got a spoon.

The simple things, right?  The nice thing about Jack's spoon habit is that it's something that's readily available just about anywhere.  You need entertainment?  Get a spoon!

The downside?  Some of us actually use silverware for it's intended purpose - eating.  When I notice my tablespoon supply dwindling, I need only search as far as Jack's toy box to find a treasure trove.  Obviously, spoons do not belong in the kitchen.  The deserve a well-earned place among the choo-choos.

My only fear with the spoons is that he's going to harm his teeth.  I hope not, but I get the feeling that chewing on metal is probably not the best thing for his delicate baby chompers.  We've gotten vinyl, non-toxic, potable water tubing at the urging of Jack's SLP for oral-motor work.  Why chew on something that Mom and Dad want you to chew (and that has the added bonus of strengthening the muscles in your face) when you could easily chew something of which the before mentioned parents strongly disapprove?  Hopefully my dentist friends out there can reassure me that Jack can't destroy his teeth with a spoon.

One great thing about Jack's love of spoons is that he gets that they go near mouths, so he pushes them towards our mouths.  That's huge!  He's showing some degree of sharing in an experience by doing that!  That's such a big deal for him!  So, he's getting something out of this new obsession.

While I am not psyched about the constant search for silverware in our house, it could be worse.  At least it's not steak knives.

Aquatic Therapy = Success!

Take this sensory issues.  The pool regulates my kid like you wouldn't believe.

I was slightly nervous about our first experience in aquatic therapy.  First, I was not totally convinced that Jack had gross motor issues.  Second, Jack hasn't been a big fan of pools in the past.  The first time we took him swimming, in May 2010, it was at an indoor pool and he was okay.  The second time, we went to Brian's parents' neighborhood pool and Jack freaked out.  So, I wasn't optimistic.

This was a different pool.  Walking into the aquatics center, you get overwhelmed by the humidity and the smell of chlorine.  Passing the lap pools, you look ahead and see the therapy pool.  There are ramps and lifts to help people of all abilities access the pool.  Senior citizens work with weights in the water.  There are several therapists working with children of multiple ages and abilities.  There are toys and floats among them.  It looks like a place any child would want to play.

Jack's aquatic therapist was very nice.  As she looked over Jack's OT evaluation, she placed Jack in her lap to get him used to her presence.  Despite chewing and grasping his Pez dispenser, he slipped out of her lap almost immediately.  No way he was going to let her hold him.

When it came time to get him in the water, he tentatively got on the first step.  After that, he seemed at ease.  Once his therapist got him out into the open water, he leaned his head back and opened his mouth wide, showing the traces of a goofy grin among his relaxation.  His PT mentioned that the water provides pressure from all sides, causing Jack to relax.  It did.  He was at ease.

She was then able to work well with him.  His PT did notice some motor issues that need to be addressed.  Jack has weakness on the left side of his body.  His movements are predominately executed by the right side of his body.  She noted his motor planning issues, which his OT noted, so they were no surprise to us.  So, Jack does need PT.  Perhaps, since he has so many sensory issues, aquatics is the ideal way to address these issues.

The only meltdown was upon Jack getting out of the pool.  He started to fret, and continued to whimper as I dried him off.  He did spit-up a bit while I was drying him off, but I considered it a success that he didn't throw up in the pool.  That would have been more than embarrassing.

We start this new chapter in Jack's treatment with the hopes that he will not have to continue in aquatic PT nearly as long as we anticipate he will need ST and OT.  My hopes are that Jack will gain motor skills to allow him the physical ability, if not the cognitive ability and desire, to play and participate in age-appropriate activities.

We will see what comes next.  I'm excited to see what this additional therapy will offer Jack.

Dreams Out of Reach, Not Out of Mind

Having a child with special needs, umm, derails your previous dreams.  You reinvent new ones.  You discover what's really important.  Sometimes, it's important to revisit those dreams.  Here are a few of the dreams I dreamt prior to being the mom of a kid on the spectrum:

• Visit India and Japan
• Write a book
• Live in the UK for a while, but one day come home
• Go back to school
• Weigh 130 lbs.
• Learn to crochet
• Have another baby
• Be considered a truly gifted, intellectual woman
• Teach my son to use chopsticks and have sushi/sashimi lunches with him

Maybe some of those dreams, like weighing 130 lbs., will still happen.  Others, like living in the UK, probably won't.  Autism, and having a child with special needs in general, forces you to recreate dreams for yourself and your child.  If I had to make a new "dreams" list now, this is what it might include:

• Take Jack to a baseball game and have him enjoy it (no meltdowns)
• Be able to eat at a restaurant as a family
• Be able to have a conversation with Jack and have him tell me what's on his mind
• For Jack be mainstreamed by the first grade
• Take Jack to Disney World
• For Jack be able to eat his own birthday cake
• For Jack to do something with his life, on his terms, that brings him satisfaction and fulfillment

Your priorities change.  Your life changes.  The fact that you dream does not.  I think that accepting your child's condition and setting new goals and dreams is important.  Without it, you can be stuck in a cycle of self-pity.  I think that all parents of special needs kids do feel self-pity from time to time, but I feel fortunate that those times are fewer and farther between.

I feel like I can finally say it...I'm okay with the fact that Jack's autistic.  He's a great kid.  I am fortunate to be his Mom.  I will dream for him and revise those dreams if I need to do so.  I am okay with whatever path Jack's life takes.  I will continue to fight to get him the therapy and assistance he needs to grow and develop, but I'll be okay with the end destination, whatever it may be.  If anything, acceptance gives me the courage and power to fight harder, because I no longer feel overcome with despair.

Jack is a beautiful little boy.  Despite his challenges, I have to see his world as limitless.  With help, he can accomplish anything and dream the biggest dreams.  I will do anything I can to help his dreams come true.

The Scale

Sorry that I've posted intermittently over the past couple of weeks.  What can I say?  I'm a slacker.

No, not really.  I have slacked on the blog, but here are the things I've done these past 2 weeks:

• Filed appeals with UnitedHealthcare for additional speech visits so that Jack can go to speech twice weekly
• Tried to make forward progress on Jack's Katie Beckett Deeming Waiver application, despite the inability of government agencies to return my calls
• Gotten everything squared away for Jack to start aquatic PT tomorrow
• Written a civil but firm letter to Jack's BCW service coordinator regarding our disagreement over dropping Jack's ABA from weekly to monthly
• Started a new diet/exercise program, because I feel like a fatty

It's the last of these that I think I've struggled with the most.  It's difficult to fit in time to exercise, let alone eat, when you're busy with a special needs kid.  More often than not, meals for me are whatever I can cram into my face the fastest.

Exercising is a whole other beast.  We have very little unstructured time during the week.  We now have 5 hours of various therapies weekly, which will bump up to 6 hours if we get approved for the extra speech session weekly.  In addition, we do a couple of hours of Floortime daily.  I also try to take Jack to the park as often as I can, because physical activity is the only way I can wear him out enough to nap.  During nap time, I'm homebound and try not to make too much noise by exercising, because any little thing will wake him up.  Once Brian gets home, I try to spend time with him.  Not to mention that starting next month, Brian and I are taking classes on designing a Floortime home program.

Whew.

I'm trying to do it anyway.  So far, I've had no success in losing any weight, despite exercising every morning and eating slightly better.  It's frustrating how progress comes slowly, not unlike the whole therapy process with Jack.  Sometimes I feel like the stress is causing my body to hang on to every ounce it can.

Super busy Moms, and not yet Moms, out there...how do you manage to lose weight while juggling everything else?

The Shiner

I couldn't get a picture of Jack's shiner, so this was the
closest to a black eye that you'll get.  It also shows how
Southern I am, since "black eye" also refers to peas.

I'm about to introduce an element of the darker side of autism - self-injury.

Poor Jack.  It was Tuesday night.  He was having a rough meal, as is not uncommon with him.  He thrashed.  He raged.  Eventually, he slammed his head on the dining room table.  He was already crying, so I'm not sure if he even felt any pain.  He usually doesn't.

The rest of the evening, his head looked fine.  I thought that was the end of it.  I was wrong.

When he woke up Wednesday morning, Jack was sporting a swollen, bruised eyelid.  Now, in reality, he may have done that in his crib overnight, but I imagine it came from our head-banging incident at dinner the night before.

That's not the end of the head-banging.  It's happening everywhere.  He's banging his head on the sliding-glass door.  He's banging his head on me during meltdowns.  He bangs his head when I tell him not to hit, because head-banging would obviously be an acceptable alternative.

On Friday, at my Mom's house, Jack had a pretty decent meltdown.  In reality, I've seen worse, but I think it was upsetting to my family.  Seeing him thrash, bang his head against my body, and scream was a bit upsetting to them.  This meltdown lasted a while, but we've had longer ones, too.  It was probably the first time they've ever really seen him melt down.

Now, I can work with some behaviors, but aggression and self-injury are a couple that I can't seem to get a handle on.  No matter how stern I sound when I say "No hit!", it doesn't seem to have any effect.  Now, in reality, he probably doesn't know what I'm asking when I say "No hit!", so I reinforce it with holding his hands to his side, but that doesn't work, either.  It also doesn't solve the head issue.

I've tried restraint.  He doesn't have the receptive language to understand time-outs (we've tried).  Simply saying "No!" doesn't work, again because of the language issue.

It's heartbreaking seeing him meltdown.  I know he can't control his actions during a meltdown, but I still wish I could help him control it.

I love Jack with all my heart.  I know that the raging, melting down child isn't what defines him.  He's a little boy who loves trains and has the softest, downy blonde hair.  The things he does that bring attention to his autism aren't who he is.  He is autistic, but autism isn't what primarily defines him.

Special needs parents, any advice on how to get a child with almost receptive language to stop injuring himself (and others)?  What discipline techniques have worked for you?

Commercialism

Jack is in love with "As Seen On TV" products.  In particular, he likes this one product called a Pack-It.  Anytime he hears the commercial come on, he starts parroting "Pack-It!  Pack-It!"

The joys of echolalia.

Bear in mind, we watch Sprout almost exclusively.  I like Sprout, because the number of kid-geared commercials is small and those that are geared toward kids aren't for junk like McDonald's or a billion toys that we don't need.  The majority of the commercials are geared towards Moms.  They're for types of baby food, or "As Seen On TV" products, like the Baby Bullet (which I would so have if I wasn't in love with my Ninja) or the Pack-It.

The Pack-It, for those of you not subjected to 4-minute infomercials all day long, is a lunch box with reusable ice pack sides, so your kid's food is guaranteed to stay fresh for 10 hours.  They even claim that you can reuse leftovers out of a Pack-It.  "Sorry kids, you have to eat the crap you didn't eat today for lunch tomorrow."  Ewww...

Jack, however, is mesmerized.  I find it funny, really.  I absolutely hate commercials.  DVR has been the greatest invention ever to me, because I can record every show I want to watch and simply skip the commercials.  The prospect of this would not make Jack happy.  He actually wants to see the commercials.  Clearly, he's such a sucker for advertising.

Who knows why he likes the Pack-It commercial.  Being a spectrum kid, there are any number of things, from flashy colors (visual stimulation) to spinning things, that can attract his attention.  It works, too.  Maybe I should be glad that he's not really communicating yet, because I get the feeling that he would request a Pack-It.

It's amazing how commercials stick with you, though.  I still remember product jingles from when I was a kid.  There is an oatmeal commercial that was on over and over again while I was in the hospital for a week when Jack was born.  Every time I see that commercial, I remember the hospital.

Parents, are there commercials that your kids seem to like as much as the TV programming itself?  Which ones stand out?

I Now Pronounce You Bert and Ernie

"Aww, gee Bert, that's swell!"

I guess it was a slow news night last Thursday, but imagine my surprise to see on the 11:00 news a story about a group petitioning for iconic Sesame Street characters Bert and Ernie to be married.

My primary reaction was this:  Why?


Let me preface my next statement by saying this - regardless of how you feel about it morally, everyone has a constitutional right to equality under the law.  Constitutionally, I believe there to be no reason why same sex couples cannot marry.  Morally, I believe the same thing.  It's not something I'd do, but I'm not that kind of gal.  It doesn't hurt me in anyway for same sex couples to marry.  On the contrary, why shouldn't everyone get the equal opportunity to be as happy (or miserable, depending on how you look at it) as the rest of us?

That being said - I do not agree with the thought that Bert and Ernie should marry.

Why, you may ask?  Because they're friggin' puppets!!!


Why oh why can't Bert and Ernie be asexual beings, just friends, mind you?  (Sesame Street, for their part, have said this is exactly what Bert and Ernie are - best friends in spite of their myriad of differences.)  Big Bird isn't out scoping Central Park for another large-proportioned female version of himself.  Elmo isn't dating Abby.  Cookie Monster hasn't hooked up with a female, er, Cookie Monster.

Why can't sexuality be left out of preschool programming?  And haven't we already gone there with the Teletubbies?

I get it.  It's a part of life and there are plenty of kids out there with 2 moms or 2 daddies.  That's fine.  I think you can subtly put that into the show (like have a segment where a kid has same-sex parents) without making it the focus.  Seeing a kid with same sex parents doing something like going to a museum, for example.  That subtly introduces the concept without it being a "My-2-Daddies-Are-Getting-Married" kind of thing.  There are kids on Sesame Street all the time from different backgrounds and with different abilities.  It's one of the things I like about the show.

Is sexuality and sexual orientation a fact of life?  Yes.  While my preschooler won't do this, other kids his age will question things like that which are, for lack of a better word, not commonplace in their worlds.  Seeing Bert and Ernie get married might bring up some questions - questions which are a little mature for discussing with the preschool set.  It's the same reason why I wish that MLB wouldn't place ads for Viagra during baseball broadcasts.  No parent wants to have to tell their kid what Viagra is (and for those of you who say "Just tell them it's not important", you've never been around a preschooler...they'll hound you) and what it's used for.  "What's erectile dysfunction?" your little tyke will say, as you try desperately to change the topic (and the channel) to Barney.

Sorry, Bert and Ernie, that I don't support your "desire" to marry, but I get the feeling that you really don't care either.  Your oatmeal and rubber duckies are, respectively, more important to you.

What do you think?  Should Sesame Street be progressive, or is this crossing the line with regards to preschool programming?

Drooly Development

Homer hasn't got anything on Jack.

For those of you who have kids, do you remember how your kids went through a phase as infants where everything was in their mouths and drool was everywhere?  Jack never went through that phase...until now.

In fact, Jack's therapists have informed me that Jack's just now entering that phase at the ripe old age of nearly 2.5 years old.  No, it's not teething, either; he has all of the teeth he'll get for a while.  While that seems sad that it's taken him this long, it's good because he's embarking on a new phase of development and a necessary step towards eventual independence and mainstreaming.

At the moment, everything is in his mouth and there is drool on everything.  Just in case you were wondering, drool bibs don't come in 2T-3T.

When I say everything is going in the mouth, I mean everything.  Here is a sampling of what I have pulled out of Jack's mouth:

• Chipped paint from his beloved Pez dispensers
• A bottle cap found at the park by the sandbox
• Washcloths galore
• A plastic knife (no worries, it was one from his toddler set)
• His shirt
• Just about any public railing

If only they made Lysol for tongues.  I've been hesitant in stopping him from "exploring" with his mouth, because he's been so reluctant to mouth things until recently.  His ST says all the drooling is good, that it means he's getting sensory stimulation which will (hopefully) help his oral sensitivities and oral-motor skills.

Every time I pick him up, he leaves a puddle on my shoulder.  Time to pull out the burp cloths again.  I'll welcome any development I can get, because we definitely want him progressing out of these "infant" stages.

Back to Gymboree

Gymbo the Clown (in puppet form) isn't too bad,
but clowns in general creep me out.  The ones
at the hospital particularly scare me.  They look like
they are going to take my kidneys or get stabbity.

It's been a busy month.  We've had multiple appointments with Jack's gastroenterologist, a follow-up appointment with Jack's developmental pediatrician, and Jack had surgery.  In the midst of all that, we haven't had time to go to Gymboree.

Oops.

There's not much we could do about it, though.  There are only a couple days a week that Jack can go to Gymboree and if we happen to have another appointment, or a rescheduled therapy, on one of those days he just can't go.

After our month's long hiatus, we finally got to Gymboree yesterday.  It wasn't his normal day, but a make-up day.  Normally, we go to Gymboree immediately after speech, but this week his ST needed to reschedule to an hour later.  That meant that instead of going to his usual class, where the teacher tries (with "try" being the operant word) to involve Jack, he would be going to his old class, led by "Albert" from The Birdcage.

I wasn't sure how Jack would do after being gone for a month.  After all, socialization isn't really his thing.  For example, today in ABA at the park, his ABA therapist had another child come hug him.  He screamed bloody murder.

Thanks to the miracles of the Pez dispenser, Jack handled it like a trooper.  He did stim...a lot.  That's okay, though.  I'm starting to think that stimming isn't such a bad thing.  After all, wouldn't we rather Jack stim to self-regulate instead of simply screaming?  Using his Pez dispenser, Jack was willing to sit during circle time for a grand total of 2 minutes (I clocked it to see how long he'd sit).  That's pretty darned good for him!

He did make a little girl cry by careening into her, which was and wasn't his fault.  It was his fault because he never looks at other children or watches where he's going.  However, it was an accident.  He doesn't intend to hurt anyone, except me sometimes.

The icing on the cake for the grand return to Gymboree?  Jack walked to and from the car to Gymboree. He has only been willing to walk the route to and from the car to the playground, but this week he's expanded his horizons.  My back is eternally grateful.

Seeing as we're losing our weekly ABA, we'll definitely be keeping up with Gymboree to provide Jack as much practice as possible at socialization, because goodness knows he needs it.  I'm glad that with the addition of something as simple as a Pez dispenser and a little stimming, he's better able to cope with the stresses of the other children and the sensory overload that is Gymboree.

The Miracle Pez Dispenser

I never knew how much we would one day rely on Pez dispensers.  Personally, I detest the candy.  It is like a cheaper version of Smarties that is so hard that I fear it will crack my teeth.  Not to mention that they taste like children's medication.

Jack loves all things Thomas the Tank Engine, so it was only natural that when someone (and I don't now remember whom) saw Thomas and Percy Pez dispensers, they were his.  They have sat on a shelf for some time...until now.

Jack's therapists introduced the idea of a fidget to me a few weeks back.  He has been engaging in some self-injurious behavior, namely scratching his skin to the point of leaving scabs and scrapes all over his body.  His OT suggested this was probably done as a stim.  Great...just what we need, another stim.  I'd rather him flap his hands more than claw at his skin.

Enter the fidget.  His OT said that if we could find an object that Jack could hold and fidget with, we might be able to redirect his repetitive energies towards that object and not his poor little battered body.  So, I tried conventional ideas.  The Pez dispenser, while a bit unconventional, is the one that worked.

What makes the Pez dispenser so great?  First, there is character appeal.  Who knew that you could find Pez dispensers with Thomas the Tank Engine?  Second, they have a bit of texture (the writing on the side provides this), so Jack can rub them in his tiny little hands.  Third, there is a moving part (the "dispensing" head), so Jack can click it open and closed to his heart's content.

And it works.  It really works!

Here are the things we've been able to accomplish with the assistance of the Pez dispenser:

• Walking to and from the car to various new locations (therapy, the store, the playground)
• Getting a hair cut and not requiring 2 parents to hold Jack down
• Oral-motor work (not me doing it...his ST)
• A couple of minutes of circle time at Gymboree (I'm happy with 2 minutes)
• Long-division (just kidding, but it wouldn't shock me)

Jack's therapists are all thrilled.  Unfortunately, the fidget hasn't served it's original purpose, which was to keep Jack from clawing himself up, so we're still trying to find a solution to that one.  However, the Pez dispenser keeps him regulated in ways I could have only imagined a couple of weeks prior.  Of course, we're now dependent on it and can't leave home without it, but I'll take that right now.

Now, off to buy every Thomas or Percy Pez dispenser in the state...

Seeing Red Tape

Word of warning - you're about to get a full-on rant out of me.

I met with Jack's service coordinator from BCW the other day.  I meet with her quarterly to go over Jack's services, which right now is only one hour of SI/ABA weekly.  When Jack was initially diagnosed, BCW dragged their feet in offering more services, so we have gone private for all of our other therapies.

It's time that Jack gets his share.

These meetings are always frustrating to me.  I guess I don't think like a bureaucrat, because the red tape and lack of common sense boggles me.  The first thing we discussed was changing Jack's eligibility for BCW.  Kids can qualify in two ways, either by having significant developmental delays or by having an eligible condition, of which autism spectrum disorders qualify.

Now, in my ignorance, I thought that the fact that I was holding an IFSP in my hand from 3 months ago that lists Jack's eligibility as being based on his autism would mean that this issue had been put to rest.  Nope.  So, I whip out the final report from Jack's evaluation with the DP.  Our service coordinator eyes it for a moment and says, "This doesn't say he was diagnosed with an ASD."

I point out to her the sentence in the Clinical Summary section that says "Jack demonstrates (list of tons of symptoms and delays here), features which are consistent with a diagnosis of an autism spectrum condition, specifically PDD-NOS."

Did you see it, too?  Diagnosis of an autism spectrum condition.  Do you know what she said to that?  "It still doesn't say that he was diagnosed with an ASD."

"So, unless it said 'Jack is diagnosed with autism' exactly, you wouldn't accept this documentation?"  I had to say it.  It just seemed like an idiotic conversation to have.  It was on par with "I didn't inhale" and "Define sexual relations."

So, I whipped out about 5 different things from the DP (receipts, prescriptions, etc.) all listing Jack's PDD-NOS diagnosis along with the ICD diagnosis code.  That shut her up, but the fact that she was harping on the semantics was simply infuriating.

Next, we moved on to the more important business of actually helping my son.  I mentioned that at our last DP appointment, Dr. DP had prescribed aquatic therapy and we would like to see about getting it as a service through BCW.  I whipped out the prescription (which also listed Jack's PDD-NOS diagnosis on it) and showed it to her.  She said that wouldn't be a problem, and that BCW had multiple aquatic providers, but we'd have to drop our SI/ABA down to once a month.

Once a month?  What the hell good is once a month?

Apparently, BCW will only provide one weekly primary therapy to our kids and all others are supplemental, so you can't get them as often.  What about the families who rely on them for all of their therapies?

I was appalled by the whole meeting.  How can we do this to our children?  How can the state turn their backs on kids when this is the critical time to provide these interventions?  By denying children like the Jack the maximum intervention possible, they are decreasing the positive outlook for these kids.

Shame on them.

This is why everyone complains about the inefficiencies of government.  By focusing so much on semantics, red tape, and other bureaucratic nonsense, the government is harming the ones who need these services the most - our children.  It leaves parents who want so desperately to do something, anything, for our children no option but to go it alone.  To scrape together treatments to help our kids.  Jack's one of the lucky ones, because we have insurance and some limited resources to help get the care he needs without having to rely on a government so focused on fighting amongst themselves to concentrate on what matters.

I would ask everyone voting in the next election to think about things like this.  It doesn't matter what political party you affiliate with, but bear in mind the impact that our votes and decisions have on our country's most vulnerable children.  It is a shame that the ones who need it most, who cannot speak for themselves, are the ones who seem to suffer from the budget cuts.

Maybe, we all need to get our priorities straight.

Behavioral in Nature

We finally heard the last of Jack's GI test results.  The biopsies were negative.  The endoscopy was normal.  The pH study was normal.

That means that there is no medical cause, that they can find, for why my baby boy throws up so much.  He doesn't even have reflux, like he had been diagnosed with when he was still an infant.  The easy answer I had so hoped for is simply not there.

When the nurse called with the results, I asked where we go from here.  She said that there's nothing that they can do.  They've ruled out all medical causes and have to determine that his vomiting is "behavioral in nature."

Behavioral.  I hate that word.  It makes it sound as if it's something that he voluntarily does.  He's been throwing up like this since he was a newborn.  I promise, he doesn't like throwing up.  Believe me, he doesn't seem to enjoy it.

The nurse said that normally they would refer kids like Jack to speech and occupational therapy, but he's already in both, so there's literally nothing left for them to do.

Therapy is such a slow and laborious process.  I wish there had been an easier solution.  When our SLP told me that she suspected a GI problem, I felt a glimmer of hope.  Here is something that we can fix!  It's not, at least not in the short-term.

Autism is full of highs and lows.  I had a high today with Jack walking to and from therapy with minimal difficulty.  I had a low when I heard that there is no easy way to treat my baby's feeding problem.

I know that treating autism isn't a fast process, but I'm starting to have to accept it, too.  Therapy will be a part of our lives for a very long time.  There will be no easy way to fix this, but I have to keep trying.  That's all I can do.

Extended Baby Fooding

It's an understatement to say that I thought we would be past baby food by now, but alas, I'm still cranking out the purees with no end in sight.  On one hand, it's a good thing.  I think it's easier to feed kids healthy food when it's pureed.  You can slip all kinds of stuff in there and your kids may (or may not) notice.

On the other hand, I have a 2.5 year old still eating purees.  There are days when I would kill to be able to just run through a drive-thru and get him a kid's meal.  Don't judge...we've all been there.

I am not a snob about jarred baby food or anything, but for the most part I've homemade all of Jack's purees.  I've done this for two reasons.  First, I know exactly what goes in his food that way.  Second, as he gets bigger and the quantity of food he eats increases, that would equal a huge expense in terms of jars of baby food.  Jarred food isn't cheap!

Let me say this, too, purees aren't just for babies.  You can use the power of purees to slip all kinds of things into your kids' food.

If you've ever thought about making your own baby food, I'd say give it a go.  An excellent reference to use is Ruth Yaron's Super Baby Food (check out the "Books You Must Read" tab to see more).  Also, before you start, I'd highly suggest investing in a good quality food processor/blender.  It'll make all the difference in the quality of purees you can produce.  Some processors leave purees chunky, which doesn't work well for babies who are still on Stage 1 textures (Jack is around a Stage 2-3 with most foods).  I use a Ninja Professional processor/blender, and it's awesome.

You'll also need storage containers for your purees.  Freezing purees is super easy.  You can freeze tablespoon-sized portions in ice cube trays with lids (transfer the cubes to freezer bags once frozen), or for older babies/toddlers, freeze servings in small to medium-sized BPA-free storage containers.  Ikea has a set that is the perfect size for baby food (and I got it for about $4!).

When it's time to feed, you simply thaw the puree in the microwave or, if you think about it ahead of time, overnight in the fridge.

I hope you enjoyed this homemade baby food tutorial.  I hope you aren't still making baby food when your kids are 2.5, but if you are, know you're in good company!

How Did You Know?

A lack of making and sustaining eye contact, along
with flat facial expressions, are two of the red flags
for ASDs.

Jack and I were at the playground about a week ago when a particularly chatty mom started talking to me while we were pushing our kids on the swings.  At one point, she noticed that I was signing to Jack as I spoke to him.  She looked puzzled and asked, "Why do you use sign language with him?"

This was actually the first time anyone has asked me this.  She wasn't asking in an accusatory way, more like she was curious.  So, I decided to reply honestly.  "My son's autistic.  We're trying to teach him to sign with the hopes that it will help give him a way to communicate with us."

Her jaw dropped.  She asked Jack's age and then asked a question that I get asked so frequently.  "How did you know that your son was autistic?"

Interesting question.  I think what most people really want to know is "How would I know if my child is autistic?"  That's fair, too.

I think the important thing to remember is that autism doesn't just sneak up on you.  If you're paying any attention to your child's developmental milestones, your child is meeting them, and you feel like everything is going right, then you probably have nothing to worry about.

That being said, there are plenty of people, myself included at first, who swear that there's nothing wrong, that their kid is just a "late bloomer".  However, if you talk to these parents later, they'll admit that they knew something was wrong, but were trying to make excuses for it.

I definitely tried to make excuses.  At Jack's 1 year check-up, he wasn't pointing, clapping, or waving.  I was asked if he did those things and I said "Only if I take his hand(s) and make him do it."  The nurse said that was fine, so I didn't worry, but I should have.  I think I knew that answer wasn't acceptable, but I didn't want to hear it.  The nurse told me exactly what I wanted to hear.

At Jack's 18 month check-up, I mentioned to the pediatrician concerns I had about his eating habits.  Now, our pediatrician has been hearing me bring up feeding concerns since Jack was born, but she said what she always said..."Just keep pushing the textures and new foods on him; he'll take them."  I had also read that children Jack's age should be saying between 15-20 words; he was saying 6.  However, they asked me if Jack was saying 6-20 words, and I said yes, because he was saying 6.  I knew that is words weren't like real words - no communicative value - but that's not what they asked.  He said them, so I took the literal interpretation of it and tried to push it out of my mind.

In between Jack's 18 month and 24 month check-ups, I called to speak to the nurses a couple more times about my concerns.  He still threw up constantly.  He wouldn't self-feed.  He seemed to be gaining no new words.  To the contrary, eventually we realized he was losing them.  He babbled and jargoned a lot.  The nurses told us that they didn't even evaluate speech until the 24 month check-up.  As for his lack of feeding skills, they suggested that he was "lazy" and that we should force him to eat by himself.  They said to feed him one meal a day and then make him self-feed everything else.  If he didn't eat, he just didn't eat, they said.  I tried to put the concerns out of my mind.  I knew he wasn't lazy, but it was better than the alternatives.

There were other things that I never mentioned to the pediatrician, like the way that crowds, restaurants, and other public places bothered him.  Going on preschool tours was torture for him.  We went to a birthday party when Jack was 3 months old, and he screamed like I'd never heard him scream before.  It was uncharacteristic of him, because he was such an easy baby.  He threw up a lot, but never cried, never wanted to be picked up, and had a very serious disposition.  He used to love to spin objects, like laundry baskets, coffee tins, and cups.  We just thought he was a genius.  "He's studying the way they move; he'll be an engineer like me one day," I would say.

Once he started Gymboree at 6 months, I knew he was different from other kids.  He screamed straight through his first few classes.  He was late to crawl and walk, which made him one of the oldest kids in his class.  He wasn't interested in climbing all over the equipment like the other kids.  Instead, he wanted to empty a bucket of balls and spin it.  Or pace.

He wouldn't look me in the eye.  He wouldn't respond when I called his name.

The first time I heard the word "autism" was when I was trying to find a reason for Jack's feeding problems.  He was about 9 months old and I ran across a study that said that kids with autism have a higher incidence of GI problems.  I dismissed it.  After all, Jack wasn't autistic, right?

Finally, I called the doctor's office because Brian and I were concerned that, perhaps, Jack wasn't hearing us.  He wouldn't respond to our voices and seemed to be off in his own world.  Maybe he just couldn't hear us?  Calling a doctor and saying "I think my child may have a hearing problem" gets you noticed more than saying "I think my child may have a developmental problem."  It was that call that started the process, but we didn't get a referral to a developmental pediatrician until Jack was 24 months old, and that's because I broke down crying at the doctor's office because of how behind he was.

So, to the mom who wonders if she'd know if her child was autistic, I have to say this - yes, you'd know.  You might not know what to call it, because so many people think of autism as the kid who rocks in the corner all day, but you'd know that something's off.  Your child might be quirky, but you know when it crosses over from quirky to problem.

If you wonder how you'd know, but you honestly don't think there's a problem, then your child is likely fine.  However, if you know that there's something wrong with your child, do something.  The longer you try to dismiss your own concerns, or let others dismiss them, the longer you put off getting your child the help he or she needs.

Special needs moms out there (ASD or otherwise), how did you know something was wrong?  Feel free to share your experiences so that others can learn from our stories.

Practical Advice for New Moms

Liars.  Any parent will tell you that baby spit-up has the
potential to knock you down.

I know a lot of people who are expecting a baby right now.  No, I'm not one of them.

Inevitably, at baby showers, you get asked to give a tidbit of advice to the expecting mother.  Almost everyone responds with the obligatory "Enjoy every moment!" comment.  I feel awkward these days giving parenting advice, because a lot of my advice, like "Don't leave home without your kid's fidget!" doesn't apply to 99% of parents.

I'm also afraid that I'm going to scare most new moms.  After all, telling a new mother that a loss of speech or social skills at any age is a red flag will only serve to freak her out.

So, for all of my expecting friends and family, here is some practical advice about life with a newborn:

1. Pack/buy light.  Babies R' Us publishes a list of things that you absolutely must have for a newborn.  They're wrong.  Babies R' Us publishes that list to get you to buy more crap.  Here are the only things you need prior to delivery for a brand-new baby:

• Clothes.  And buy as few outfits in a newborn size as you can.  Your kid will wear them a couple of weeks before moving on to 3 month sizes.  Also, you don't need to dress your baby for arctic weather when it's August in the South.  Long sleeves/pants are okay; parkas are overkill.
• Diapers.  That's a given.  Really, you don't need the newborn-sized ones.  The hospital only stocks size 1 (just roll the top of the diaper down so it doesn't rub the baby's umbilical cord).  Get more diapers than you think you need, though.  A pack of 240 will probably last you a little over 2 weeks (they go through a ton of diapers a day at this age).
• Diaper Disposal Receptacle.  I am shocked every time someone tells me that they don't plan to get one, because they'll just throw the diapers in the household trash.  Sure, if you want to make it difficult to breathe in your house.  Yes, you need this.
• Baby Wipe Warmer.  This is another thing that people look at and think "Why the hell would I need that?"  Guess what?  Diaper changes will be a billion times easier with one.  Would you want to wipe with something that's cold?  Nope, didn't think so.  Neither does your kid.  Did I mention that little boys spontaneously pee when it gets cold?
• Bottles/Formula.  This is a no-brainer if you plan to formula feed.  However, you should get some even if you don't plan to formula feed.  Why?  Because, things go awry.  You might have a child who's jaundiced and you'll be forced to supplement while your child recovers.  Breast-feeding may not work for you.  You need to feed your kid in the meantime.
• Washcloths/towels/baby wash.  Yes, babies must bathe.  You can use the baby wash for washing both hair and skin.  No shampoo necessary.
• Bassinet.  Baby's gotta sleep somewhere.  Jack slept in the bassinet of the Pack n' Play for the first 4 months of his life.
• Swaddling apparatus.  Most babies love swaddling.  If you happen to be a swaddling ninja, then just get swaddling blankets.  If not, they make awesome velcro swaddlers that bind baby in like they're wearing a straight-jacket.  Sweet!
• Nursing pillow.  Regardless of whether or not you nurse, this will save your arms and back from much pain while holding your baby.
• Car seat.  You can't bring baby home without one.  Be smart and buy one that will last a while, though.
• Nursing pads.  Regardless of whether or not you nurse, the milk's gotta go somewhere.  Rather it be the pad than your shirt.

Here are the things you absolutely don't need to buy for your brand-new newborn:

• Toys.  They won't be playing with them.  All newborns do is sleep, eat, and poop.
• High-chairs/utensils/plates.  Your kid's first meal at home won't be a steak.  You won't even think about feeding solids until 4 months at the earliest, so save your money.
• Crib.  Yeah, you don't need one.  Doctors recommend that the baby sleeps in a separate sleep-space from you, but in the same room.  Bassinets (or Pack n' Plays, like we used) are best for this use.  Co-sleeper bassinets are awesome, too.  Cribs are behemoths to move around, so unless you absolutely want the nursery set up immediately, you can forgo the crib for a couple of months.
• Sterilizers.  Unless you have really dirty water (or a preemie), you can forgo this.  The dishwasher does just as good of a job sanitizing bottles/breast pump components as the sterilizer will.
• Wee-blockers.  Anyone who's seen one of these and see how force is behind a baby boy's pee will tell you that they have no chance of working.  Period.  I used a washcloth instead.

2. Ask for help, but don't be afraid to also say "Go Away."  Sometimes family will offer to practically move in with you and sometimes they won't offer help at all.  However, if you ask, they will help.  So ask!  It's hard adjusting to life with a newborn. When people call and ask "Do you need anything?", don't hesitate to ask them to run to the store for you or bring over dinner.  Everyone understands that babies are an overwhelming amount of work.

On the same token, if guests overstay their welcome, kick them out.  Some people just don't take a hint.

3. Don't beat yourself up over breast-feeding.  If you want to be successful with breast-feeding, the odds are that you can/will be.  Get help from lactation specialists and don't be afraid to call your pediatrician and tell them that you need help.  If possible, find a pediatrician who is also a lactation consultant (or has one in their practice).  However, it doesn't always work.  In our case, Jack never could latch on properly.  We know now that he has oral-motor problems that likely caused this, but at the time I beat myself up over it.  Sometimes, the stress makes it too hard to breast-feed.  Either way, your baby will get excellent nutrition from both bottle and breast.

4.  Never change a baby boy's diaper while talking/with your mouth open.  Someone gave me this good piece of advice, and it is a good piece of advice.  Just don't do it.  You'll regret it if you do.

5. Read/actively attempt to engage your baby from day one.  Talk to your baby.  Sing to him.  Spend time looking at his face so that he can look at yours.  It's the best way to promote your baby's healthy development and engagement.

6. Doctors may be smarty-pants and know a lot, but you're the expert on your child.  If you feel like something's wrong with your baby, ask about it.  If the doctor dismisses you, but you still feel in your gut that you're right, keep pressing the issue.  Doctors spend 10-15 minutes with your child.  You spend nearly every moment of every day with them.  You know if something's wrong.

7. Poop, at high velocities, can travel further than you might imagine.  You will have to clean crap off of your baby's neck one day.  Just warning you in advance.

8.  Let/make the lazy man occupying space in your home your spouse help.  If your spouse wants to help, let him.  If he doesn't, make him.  He helped create the baby (and if he didn't, you've got bigger issues), so he can bear some of the parenting responsibilities.  Even if your hubby works, that doesn't mean he's immune to helping out with late-night feedings.  Remember, you just carried and gave birth to a human being; you need your rest, too.

9.  Formula vomit stains do not come out of carpet.  Stain treat those bad boys immediately!

10.  Learn to laugh.  When your baby does puke all over the floor, or when he has a diaper blowout that you hear from 2 rooms away, try not to get too worked up over it.  Try to laugh it off, clean it up, and move on.

Moms out there, what practical (not "Enjoy every moment"-type) advice would you give to a brand new mom?

Snuggle Days

Thanks to the wonders of pharmaceuticals, I have rejoined the ranks of the living.  It's good to be back, folks!  For those of you who are still guessing my ailment, I'll give you one more day before the big reveal.

Living in the South, you know that in July/August someone decides to set the outdoor thermostat to "hell" and leave it there.  So, unless you get your outdoor activities in before 10 AM, you're potentially facing 90 plus degree weather from that point forward.

No number of glasses of sweet tea can help you overcome that.

We do our weekly ABA session at the park, and I try to take Jack to the park every free day we get where the temperatures aren't getting into the "hell" range.  However, days like today when my phone keeps alerting me to a heat advisory are designed to be lazy days at home.

It's just as well.  I'm feeling better, but I probably shouldn't push it.  The last thing I need is a relapse.

We don't have too many days these days where we have nothing going on.  It seems like almost everyday is booked up with a therapy session (or two), a doctor's appointment, or some other random aspect of parenting a special needs child.  Every once in a while, when we have nothing going on and nowhere to be, I declare the day a "Snuggle Day".

Now, the name is deceptive.  In the tradition of all things Jack, there is no actual snuggling taking place on Snuggle Days.  The only thing we do on Snuggle Days is our daily regimen of Floortime, which is more like play than work to Jack, except for the interacting part.  Otherwise, we stay in pajamas or comfy clothes.  We usually watch a movie, and it's almost always Thomas the Tank Engine in Misty Island Rescue.

I know that many moms of ASD kiddos really hate unstructured days.  Well, we keep some resemblance of structure.  We stick to Jack's base routine, but he gets more time to just do what he wants and be a kid.  I love Snuggle Days because I feel like he's all mine for one day.  Sure, you never escape autism, but it's nice to feel some resemblance of normal family life by having a relaxing day at home.

Snuggle Days force me to slow down a bit, too.  Lately, I feel like the special needs equivalent of a soccer mom.  Call me a "Therapy Mom".  I have the Autism Speaks magnet on my car.  I'm always rushing to one session or another.  My calendar looks like a nightmare.

Snuggle Days change that dynamic for me.  This morning, I looked at one of Jack's hands and noticed how big they've gotten.  I remember how those tiny hands could barely reach all the way around one of my fingers.  Now, they're much more childlike.  He's now got little freckles that frame his eyes.  When did all of that happen?  Somedays, in the hustle and bustle that is treating Jack's autism, I neglect to notice the little things.

I need to stop and do that a bit more often.

Just Breathe

Okay, for all of you Dr. House wannabes out there, I've got a fun case for you.

29-year old female, complains of coughing with thick yellow/green sputum.  Low-grade fever, temporarily relieved by 400 mg ibuprofen every 4-6 hours.  On day 6 of illness, patient complained of pain upon inhalation, which was relieved with exhalation.  General feeling of fatigue and malaise.  Was given 250 mg Z-Pac for antibiotic treatment and advised to take Mucinex DM.  On day 10 of illness, patient has improved slightly, but is continuing to cough and feel fatigued, despite completion of the course of antibiotics.

Medical background: patient is in good health, not pregnant (so don't even suggest it), no chronic health problems other than constant overwhelming stress from parenting a special needs child and a strange penchant for shows on ABC Family.

Diagnose me.

Actually, really.  This will be fun.  I know what I have, but it'll be fun to see what you all think might be wrong with me.  Feel free to leave a comment letting me know what might be wrong and how I can cure it.  If you don't see the answer to my medical troubles below, please suggest one!

Here are some possibilities for you to choose from:

• A cold gone terribly wrong
• Pneumonia
• Consumption
• The Bends
• Ebola
• Bitten by Zombie
• Nervous Breakdown

In terms of my treatment, here are some suggested options:

• More antibiotics
• Leeches
• Cough syrup/rum cocktail
• Cocktail of any sort
• Vitameatavegamin
• Zombie-biotics
• Commitment to a mental institution

You can also come up with your own.  Perhaps you know better than I do what could cure my ails?  I already know what I have, so I'll reveal the answer in a couple of days so that you can see how good of a diagnostician you really are!

In the meantime, I feel like poo.  I'm chugging Gatorade like a high-school football player and sweating nearly as much.  No sleep for the weary, either, because laying down makes me cough like I've been smoking for decades.  Excuse me while I reenter a medicated stupor.

Double Doors

Author's Note:  I apologize for being disconnected from the world this weekend.  I am in the midst of a battle with respiratory illness, so I spent most of the past few days in a medicated daze.

The morning of Jack's endoscopy was uneventful, if you don't count the fact that I was slowly slipping away from the hold of a cold and into the grips of a more serious respiratory illness.  However, nothing was going to keep me from being there for my baby.

Registration was quick.  We were taken to triage and put in a hospital room in a relatively short period of time.  Jack was doing well.  We had recently discovered the usefulness of a fidget for Jack (in his case, it's a Thomas Pez dispenser), so he was handling transitions and the sensory jungle that is the children's hospital fairly well.

It was about 2 hours before Jack's procedure, but with his fidget, plus a TV that gets PBS and a rocking chair in his hospital room, we were doing well.  As long as Jack could rock and watch Super Why, we were good.  He even tolerated the hospital gown (which I expected wouldn't be a big deal) and the sedative (with no gagging!).

The time may have dragged for Jack, but not for me.  They came for my baby far too soon.  The poor kid was so drugged on the sedative that he couldn't even sit up on hospital bed, so the nurse carried him to the OR.  He was so out of it that I don't think he even noticed.

Meanwhile, I was fighting back tears.  Seeing your baby boy get carried away from you into an OR where you can't be there to hold him or even watch over him is a scary feeling.  As a parent, that sense of powerlessness is simply overwhelming.  You turn your child, the most precious thing in your life, over to strangers and have to entrust them with his life.

There is nothing, and I mean nothing, more heartbreaking than watching your baby boy get carried off to the OR.  Even though there are tons of trained medical professionals all around, and he happens to be heavily sedated and thus okay, without you he's alone.  You try to keep it together and not cry.

It's even harder to see your baby boy coming back.

To see my little boy coming back made me feel like I could breathe again.  To see him hooked up to monitors, IVs, and various medical equipment made my heart hurt.

Jack came back to me disoriented and crying.  Before they had even wheeled his bed into position, I was leaning over him, telling him I was there.  He just kept sobbing.  I had to fight back the tears with everything I had, because I needed to stay strong for him.

On his poor little foot were his pulse ox and IV lines.  Apparently, once he woke in recovery, he started trying to claw them off, so both were now protected by a hard plastic cuff.  Poor guy.  He was in misery with the sensations, but couldn't do anything about it.  I couldn't do anything about it, either.  He needed to keep both for another hour or so.  The nurse turned to me and asked, "Do you want to hold him?"

She didn't have to ask me twice.  I scooped him up and when his eyes found my face, he sobbed harder. My poor baby.  He was just so confused, hurt, and scared.  I carried him to the rocking chair and the nurses set up his fluids on the wall nearby.  He still needed to get another bag of fluid prior to going home.  As he sobbed, I stoked his hair and his cheek and said, "Mommy's here, baby.  Mommy's right here.  I'm not going anywhere."

Finally, he went back to sleep.  I shut the rest of the world out (sorry, Brian!) and placed my cheek on his downy hair.  Once the nurses and doctors and visitors cleared out and the lights had been dimmed to allow Jack to rest, I finally allowed myself a few moments to cry.

It's hard to see your baby in pain.  It's hard to see him struggle to do simple things.  It's hard to see him go through test after test.

About an hour later, the nurses came back.  Jack was awake and, although he was groggy, he was in relatively good spirits.  After some full-fledged sensory freaking out when his IV was removed and a Band-Aid put in it's place (those of you who know us know Jack hates anything sticky anywhere on his body), we were told that we could go home.

I couldn't get us out of there fast enough.  I was ready to take my baby back to the comfort and security of our home.  We went through the double doors leading out of the surgical department and I prayed that we'd never have to cross that threshold again.