Tuesday, May 31, 2011

Hunger Strikes

Jack's liquid nutrition.  Too bad it smells like pennies.
We are in the midst of yet another full-blown hunger strike in our house.  This time, we're rejecting two of our four "preferred" foods, so that leaves Jack eating a diet of yogurt with a side of Cheerios.

Thank God for Poly-Vi-Sol.

Despite Jack's SLP's assurance that this is common with the introduction of new foods, I can't help but worry.  He's a bit of a skinny-mini, so every bite that goes in his mouth seems vitally precious to me.  I've even contemplated taking Jack to a nutritionist for a consultation.  The thought of yet another specialist on Jack's team makes my head spin.

I'm hoping (fingers crossed) that this is a passing phase.

Do you know what's horridly frustrating, too?  Jack doesn't meltdown during feeding therapy the way he does at home.  He does gag and throw up, but no meltdown.  It makes me feel like I fail at feeding my kid.

Extremely picky eating is a pretty common behavior with autism, but to me it is one of the most frustrating. It's hard enough when you have to feed your child because he cannot feed himself, but when he rejects any food you put near his mouth, that's brings frustration to a whole new level.

Unfortunately, taking Jack to a nutritionist is a bit beside the point.  A nutritionist is going to say "Yes, he isn't eating what he should" to which I'll say "No crap."  The problem is Jack's sensory issues and ritualistic behavior keep him eating a limited diet.  Only therapy is going to help that.

In the meantime, I'll try to keep my sanity and pray that Jack can grow on a diet of air, love, Poly-Vi-Sol, yogurt, Cheerios, and milk.

Monday, May 30, 2011

Memorial Day 2011

You wouldn't really know that it's Memorial Day in the Reinventing Mommy household except for the fact that Brian's home today and Jack's wearing red, white, and blue.  Otherwise, it's pretty much been a day as usual.  We had speech this morning...yes, therapy on Memorial Day.  Autism doesn't take breaks for federal holidays.

We are trying to maintain some sense of normalcy for the holiday.  I am making some of my famous (sort of) frozen custard and Brian's grilling some of his famous (sort of) burgers.  My in-laws are coming over and we're going to attempt some appearance of a normal Memorial Day cookout.

Of course, there will be little, constant reminders in the background.  Jack will insist on having The Good Night Show on when the rest of us want to eat.  He won't be at the table with us.  There might be some verbal stimming as a soundtrack to our dinner.

We salute you.
We should remember the real reason for Memorial Day - honoring the brave men and women who have served our country.  Jack's uncle is in the Army.  My Grandaddy was in the Army, too.  We thank them for making our country the wonderful place to live that it is.  Children with special needs, while the system is far from perfect, have opportunities and rights in our country that they wouldn't have in most countries.  It is people who serve our country who protect these rights and opportunities for us all, including our most vulnerable citizens.

So, I personally thank everyone who has served or currently serves our country.  Thank you for providing a land of freedom and acceptance for us all, but especially for individuals like my son.  Thank you for providing a country of legal, if not always social, acceptance for people with disabilities.  Thank you for keeping us free.  I raise my mug of frozen custard to each and every one of you.

Saturday, May 28, 2011

Respite and a Movie

Having a child with special needs tends to consume you.  You manage to steal brief moments here and there to yourself (sometimes), but it never fully escapes your mind.  I know that rarely a minute goes by in which I'm not thinking about something having to do with Jack.  We have speech Monday this week instead of Tuesday.  Did I do Jack's brushing this morning?  How much Floortime have we done today?  Can Jack handle an errand to ____?


Today I had a blissful 2 hours of not thinking about autism.  It was freakin' awesome.

Some of my in-laws are in town for the weekend.  Some of the female in-law constituency was going out to a chick flick, so I was invited to go.  I have a hard time relinquishing care of Jack to another person, even Brian.  I'm there for all of the therapy, the majority of his feedings, and everything in between, so I feel like I can't pour my knowledge completely into someone else without forgetting something.  It's just easier to do it myself.  Nevertheless, Brian encouraged me to go, because he wasn't interested unless the movie involved a) military action, or b) was some war-time drama.  Bridesmaids was neither.

So, off I went with a lump in my throat.

I actually had a blast.  It was wonderful to be able to sit back and laugh at a hideously funny movie.  My only concern was that I was watching a movie with so much language and adult content with my mother-in-law and my husband's grandmother.  There are just certain things that you can't watch in the presence of such people without feeling slightly ashamed for laughing.  Honestly, I needed a raunchy, four-letter-word-filled movie.

When we left the movie, I felt great...for about 5 more minutes.  Then, I frantically fumbled for my phone to call and find out how Jack was doing.  Still, I managed nothing but laughter and processing innuendo for over 2 hours!

Perhaps I should go be human more often...

Friday, May 27, 2011

I'm a Wuss

I've had an new member information sheet for a local autism support group sitting in my email inbox for almost a month.  I see it every day, but I can't bring myself to filling it out.  I just can't.

There's only one conclusion to draw from this; I'm a coward.

I don't know why I haven't filled it out.  Maybe I don't want to admit that I'm not handling it okay.  Maybe it's my own social anxiety.  I don't know, but I haven't done it.

At ABA this week, Jack's special instructor asked me if I've got any time during the day to take it easy or get a break.  I tried to put on a brave face when she asked, but it's just not easy to get a break.  Part of it is the realities of caring for a child with special needs; they just require a ton of time.  Another part is my own reluctance to relinquish my duties as Jack's primary caregiver.  I go to all of the therapies.  I do most of his feedings.  I am with him almost every moment he is awake during the day.  I know everything about what he likes, doesn't like, and what he's supposed to be working on.  It's hard to convey that information to someone else without forgetting something.  It's just easier to do it all myself because I know what needs to do be done to keep my little guy progressing and happy.

Then, Jack's special instructor asks me if I've joined a support group.  Busted.  I admit that I haven't, and she starts encouraging me to look into it so that I can find other people who have children with similar challenges.

I guess it's the Tiger Blood in me, but I have the hardest time admitting that I could use a friend through this who knows what I'm going through.  Through it all, us Moms feel like we've got to put on a brave face and keep it together for our kids.  We cry at night when everyone else is asleep.

I'm filling the form out now.  Time to stop being afraid.  My son has PDD-NOS, this is a fact of life.  It's time to meet some Mommas who have been there.

Thursday, May 26, 2011

Blogging...Revisited

When I started this blog last year, I listed a few reasons for jumping into the world of Mommy-blogging.  At the time, I suspected something was wrong with Jack, but was still blissfully delusional and certain that my fears were nothing but Mommy paranoia.  Fast forward to the present and I am painfully aware of the turn this blog has taken.

I had a friend from high school send me a Facebook message telling me how much she enjoys my blog.  To all of you who do enjoy reading my blog, thank you...your kind words mean more to mean than you'll ever know.  They get me through the rough days.

I replied to this friend with a couple of reasons why I enjoy blogging now.  I guess the reasons surprised me so much that I thought I'd share them.  Maybe it'll help people understand why I write about all of this with such candor.

First, this blog has, largely, become MY source of therapy.  Yes, I'd say that all Moms of special needs kids need some kind of therapy.  Some choose to self-medicate.  I don't go that route, because I intend to live forever.  Others pretend that their problems don't exist.  On some of the autism boards that I follow, I hear of many Moms who just don't tell people that their child has a problem because of the stigma that they fear they'll face along with their children.

I, on the other hand, am not ashamed at all with Jack.  Any stigma placed upon him, or any special needs child, reflects poorly upon the person passing judgment on that child and NOT on the child himself.  So, I really could care less what people think of Jack.  The people who matter will see him for who he is...a very special little boy who encounters many challenges but loves life.

I feel that the best way to help myself, and to help others understand Jack and other children on the spectrum, is to talk as openly as I can about his triumphs, struggles, and everything in between.  I think it's also important to speak candidly about the impact that autism has on a family.  It's a huge issue that doesn't get addressed by our government the way that it should, but maybe educating people about autism is a way I can help work toward that goal.

Second, I write this blog for the Mom (or Dad) out there who is starting their journey with a child with special needs.  Really, although this is a blog about Jack, it's not just about PDD-NOS or autism spectrum disorders.  This is about all children with special needs.

This journey is very isolating.  Our children have needs that far surpass those of typically-developing children.  We fight for our children like we are scrambling to meet a deadline.  In a way, we are scrambling to meet a deadline; we're racing against the clock to arm our children with the skills they need before we can no longer provide for them.  We neglect ourselves, our relationships, and run on empty in order to get there.  Nothing comes easily.  We take beatings from the insurance companies, government agencies, and even our own families and friends, but we keep going because we have to keep going.

So, to the Mom (or Dad) out there who suspects that their child has special needs, or knows that they do, this blog is here to tell you that you are, in fact, not alone.  We don't know each other and we'll most likely never meet, but maybe reading the story of my little guy will help you feel that there are others who go through this and survive.  I wish you didn't have to go through this, but you do, and I'm here.  So are others.  We're in this together for our children.

You are not alone.

Wednesday, May 25, 2011

Two Steps Forward!

While things have stalled out on the self-feeding front, I have some exciting news!  Jack's SLP thinks that he can handle learning sign language!  This is monumental for us, because in March we were told that he probably wouldn't be ready to handle communicating for another 3-6 months.  Spoken language for Jack is still probably a long, long way off, but this is something!

Jack can already sign "more" and we're working on perfecting "all done", but after that the sky's the limit.  I'm just psyched that I might be able to get some communication going with him!  Woo hoo!

Of course, there are some things that are still holding Jack back.  His lack of sustained and focused interaction makes it difficult for him to learn anything, much less signing.  We have to take his hands and make him do the signs over and over again, because he won't learn by imitating us.

Also, despite the fact that Champ was deaf and we used a few signs with him, Brian and I know almost no sign language.  I remember having a unit in TAG in the 3rd grade on sign language, but all I remember is how to sign "I love you", "M", "N", and "Z".  Not very helpful for Jack.

Jack's SLP recommended a book on ASL (American Sign Language...I'll add it to the Glossary) for us, which I'll have to learn ASAP.  Besides reinforcing his sign language at home, I'll have to be his interpreter out and about.  Originally, we were going to move to a picture system with Jack, but he's taken to the first couple of signs so well that the SLP thinks this is the way to go for him.  What's important is giving him a means of communication; I can serve as his interpreter if I have to.

In other news on the speech front, during feeding therapy Jack tried a teeny, tiny piece of banana.  He kept some of the bites down, but others came up.  We're working on "oral awareness" with cold washcloths, Twizzlers to chew on, and electric toothbrushes to help Jack become more aware of various sensations and textures in his mouth.  Hopefully it helps...I hate seeing my baby boy gagging on foods that other kids his age mastered over a year ago.

Tuesday, May 24, 2011

...One and a Half Steps Back

Our ABA therapist told me last week that treating children on the spectrum is a process of "two steps forward, one and a half steps back".  I really feel that way after this week's OT session.

The session started out great.  OT is the first therapy Jack has every week.  We got to the clinic and there was no tears, no sensory-seeking, no meltdowns, nothing!  Just a happy Jack who was content to play with the bean bag chair in the waiting room.  His OT came out to bring him back into the therapy gym and Jack went with her with no tears.  Sure, he hesitated a bit and kept looking back, but he went and seemed glad to do so.  For those of you who have been following my struggle with this transition into therapy sessions, you know how happy it made me to see Jack go willingly.  I feel bad enough that Jack spends his days in therapy rather than doing the things a typical 2-year old would do, so it was killing me to think that Jack was miserable.

If you've never had a child in therapy (and I hope you never do), you may not know that therapy can be a lot of fun for our kids.  They incorporate bubbles, swinging, sliding, and all sorts of fun activities into therapy so that it feels like playing more than anything else.  Of course, when you hear your kid screaming in the therapy gym, it's hard to feel like he's having fun.  Seeing him feel at ease today made me feel like he doesn't think this is torture.

I kept a listening ear out during therapy because I knew they were trying a new food today...mashed potatoes.  Now, we've had some feeding issues all week prior to now.  Jack has been gagging and throwing up on the old favorites, while (ironically enough) handling the newly-added applesauce with some gagging, but no throwing up.  Enter the new nemesis.

I briefly stopped listening out for the gagging when a family came into the center with a beautiful little 2-year old boy who has Down Syndrome.  This is totally off topic, but I was mesmerized by this little boy. He had the biggest smile and was so engaging...much more so than Jack ever is with me, much less a stranger.  He kept signing "book" to me so that I would hold my book up so that he could see the cover. Every time I did, he smiled with glee.  Our special needs children are truly precious gifts.

Cut back to OT.  I hear Jack's OT yell out to me from the therapy room.  Huh, I think, I guess this went better than I thought!  Wrong.  I get in there and, sure enough, Jack's gagged and thrown up.  Now, I'd tried to describe to Jack's OT how he was with food, but she'd never actually seen it herself.  Today, she saw it and was a believer.

She decided we need to change Jack's whole feeding therapy program and slow him down tremendously.  We're temporarily abandoning self-feeding as both the OT and I agreed that the gagging/vomiting has to get under control as that affects Jack's nutrition.  It is more important that Jack learns to consistently keep food down than to feed himself.

It's a step backwards, though, which is always disappointing.  Jack has almost no adaptive (self-help) skills, so learning to self-feed was going to open a world up to us in terms of bringing some normalcy to our lives.  I won't lie; it is more than a bit disappointing to know that skill is still a ways off.

To end on a good note, our two steps forward are signing "more" and "all done"!  Jack signed "more" spontaneously last Friday and "all done" yesterday!  Woo hoo!  We're on our way to communicating!

Monday, May 23, 2011

A Lack of AC Brings Out the Crazies

My eyes are starting to have that bugged out glare, too.
As if we didn't have enough going on this week, our air conditioner stopped working.

For some reason, we have the worst luck with air conditioners.  In our old apartment, the AC went out every single year.  Luckily, the maintenance foreman lived downstairs from us and was very prompt at getting the unit back in semi-working order.

Not 5 months after we moved into our house, the downstairs AC went out.  So, we got a new AC unit.  We went a glorious 2 years without incident...until this weekend.  The weekend that the temperatures in the Dirty South rose to an unseasonably warm mid-90s.

The temperature downstairs in our house is currently 82 degrees.  It is enough to bring out the crazy in all of us.  At that temperature, we all have gone into survival mode.  Brian and I are just trying to keep every one cool.  Jack has zero interest in Floortime or any other therapy.

This machine is a wretched beast.
Luckily, the upstairs AC works, so we are able to sleep comfortably.  So, imagine my surprise when Jack decided that this would be a good weekend to stop napping!  That, compounded with the AC, equaled a weekend full of fun.  Bring on the stimming.  Bring on the meltdowns.  I can't blame the kid, though.  He hates change like the rest of us, except that he takes it to a larger extreme.  Enter the meltdown before bath-time tonight that involved me getting slapped by Jack repeatedly.

What is it about the lack of climate control that brings out the worst in us?  I have no idea how people lived in the South before the advent of air conditioning.  We've been without it for less than 48 hours and already I feel like we're entering the Dark Ages.

This week is the week of my brother-in-law's graduation.  We had purposely rescheduled ABA for today so that we wouldn't have therapy at the end of the week.  So, now I'm trying to get OT, ABA, and an air conditioner repair fit into a single Monday.  Why this would happen on a double-therapy day, I have no idea.

Pray for me, kids.  It's gonna be a rough day.  Now, if I can get the AC repaired and Jack gets through the day with no meltdowns, I'll be a happy panda.

Sunday, May 22, 2011

Jenny McCarthyism

This is probably what you think of
when you think of Jenny McCarthy.
Inevitably, when people hear that Jack is autistic, I hear something about Jenny McCarthy.  Most people mention that Jenny McCarthy believes to have cured her son of autism.  Everyone else asks me what I think of her.

People have very strong opinions of Jenny McCarthy.  Most people either love her or hate her.  For those of you who don't know a lot about the world of autism treatment, Jenny McCarthy took her son to see a DAN! (Defeat Autism Now!) doctor.  These doctors practice a more biomedical approach, treating children with supplements, probiotics, dietary changes, and other treatments.  Most people in the autism community are very loyal to their chosen treatment methods and, in my opinion, the more vocal ones tend to shun those who think otherwise.  This creates a big divide among parents who, again in my opinion, should be united in advocating for our children who are all affected by the same developmental disorder.

So, I felt it only appropriate that I dedicate one post to how I feel about Jenny McCarthy.

First, I don't hate her.  Before I knew that Jack was autistic, I thought she was a bit crazy, but now, I get it.

It's not that I think the DAN! doctors are the way to go, because I don't.  McCarthy doesn't claim to be able to "cure" autism.  She claims to have helped her son "recover" from autism.  Now, I don't think there's much difference there, but there are children who seem to fall off the spectrum.  These kids, when retested, do not demonstrate the autistic traits that led to their diagnosis in the first place, but does that mean that they're "cured"?  In my opinion, no.  Not that I want to sound all Debbie Downer, because I don't.  I just believe that autism is a neurological disorder and that the brains of autistic individuals work differently.  Those individuals can be taught to cope with the sensory dysfunction and can be taught the communication and social skills to be able to function in our world nearly seamlessly.  From what I've read, most autistic adults who can self-advocate agree that they are still autistic, regardless of how well they function.  I trust their opinion.

I don't totally agree with her treatment
philosophy, but this is a very powerful
book.
On the other hand, I don't believe that DAN! doctors cannot help children with autism.  Brian and I have chosen not to go the biomedical route for several reasons, which include the cost (it's super expensive) and the fact that our developmental pediatrician, who we really trust, didn't recommend it to us.  Also, the process is supposed to be difficult for some children with the diets and all, and the fact that Jack's diet is so limited right now means that I'm not putting any dietary restrictions on him unless I absolutely have to.  However, it obviously works for some parents and I'm not going to knock anyone who wants to try to help their child.

The other big issue with Jenny McCarthy is that she thinks that vaccines caused her son's autism.  I know that all scientific evidence shows no link between autism and vaccines.  Really, in my son's case, I could care less what caused his PDD-NOS.  It's beside the point, really.  He is autistic, so dwelling on the cause is counterproductive.  However, it is an important question to ask, because it affects other children.  Personally, I believe that there is a genetic predisposition towards autism and some environmental trigger pushes children over the edge.  So, do I believe there is something environmental that contributed to Jack's autism?  Absolutely.  Do I know exactly what that is?  Nope.  I'm not going to go so far as to say that vaccines are or are not a contributing factor.  In my opinion, we just don't know enough about the mechanism for developing autism to rule anything out.

I will say that I greatly admire Jenny McCarthy.  Nobody, and I mean nobody, wants their child to be autistic.  She has used the resources she had and fought to help her child progress.  Her devotion and love for her son is inspiring.  She has also brought a very public face to an issue that is increasingly common among our children.  She is willing to do anything to help her son.  What is not to like about that?

Sure, she's outspoken, but this condition forces you to be outspoken.  You have to fight every step of the way.  You fight your regular pediatrician for years because they don't take you seriously.  You fight to get your child evaluated as quickly as possible.  Once you get a diagnosis, you fight to get services and/or insurance coverage for the multitude of therapies your child needs.  All along the way, you fight daily to help your child progress.  You are faced with an uphill battle to get your child what he/she needs.  That would make anyone, myself included, outspoken.  I just choose to speak out on a blog, not Oprah.

I think Jenny McCarthy's gotten a bad rap.  Regardless of her beliefs, she's a Mom who, just like the rest of us, is fighting to help her son.  I can't hate her for that.  In fact, I admire her courage in the face of so many people who criticize her.

Saturday, May 21, 2011

Join the Fist

"Yeah, Dwight, you can join, but not today.  Today
we have 'Operation Overthrow'."
My neighbors have begun to wage war.  Not against me, though.

Our neighborhood backs up to a private school.  The private school has petitioned once again to expand their sports facilities.  Understandable.  Kids might like to play organized sports through their school, right?

Enter the "Coalition".  One of my neighbors, a.k.a. "The Cat Lady" (so labeled because of the millions of cats I see lurking on her screened-in porch), has launched an offensive against the hopes and dreams of school children.

I get it, really I do.  My house backs up to where the sports facilities would be built, so I am acutely aware that it would equal a) more noise, b) more lights, and c) the occasional inebriated teenager meandering around our area.  I've been 17 before and seen Friday Night Lights (the James Van Der Beek version, not the TV show).  We also live within half a mile of this area's public high school, so I hear cannons and marching bands on Friday nights anyway.  No big deal.  Schools need sports facilities.  If my kid went to that school, I'd want them, too.

Sad, but so true.
The Cat Lady disagrees.  First, she doesn't understand the parent angle, because she's single and has no children, other than her cats.  Second, she is more than a bit pushy about this whole thing.  She started a petition a few weeks back to oppose the schools attempts.  No biggie, right?  People are allowed, no, encouraged to petition!  That makes our country great!

True, but feeling coerced to sign said petition is not.  She sent around notices to the whole neighborhood letting us all know when she was coming around to get our signatures and, essentially, letting us all know that if we care about our neighborhood at all we'll sign it.  You're either with us or against us, in essence.

So, her whirlwind signing tour of the neighborhood began with my house at 8 AM.  8 AM.  Really?!?  Just in case you plan on paying me a visit at 8 AM on a Saturday morning, be aware that I will not be answering the door.  I was still in my pajamas, as was Brian and Jack, so I let the doorbell ring.  After breakfast, I didn't seek her out.  Instead, I went to the grocery store.

When I got home, there is no sign of The Cat Lady.  I start to unload my car and hear, "Excuse me."  SHE'S IN MY GARAGE STANDING BEHIND ME.  She scared me so bad that I almost screamed "Holy $*!%" in her face.  Once I collected myself, I tried to be neighborly, because someone who will ambush you in your own garage is not someone you want to be your enemy.  "Hi, I'm Jeanie.  Your name is again..." Crazy Cat Lady, I think and try to remember to not call her to her face.

"I need you to sign this petition."  Not for the niceties, huh?

"I like the landscaping you've done in your yard!"  It probably hides the bodies of your previous cat horde.

As started by Jim Halpert.  Viva la
Resistance.
"This petition is important.  We need to oppose..." and I stop her there and sign the petition.  Clearly, she's not a neighbor I'm going to enjoy a glass of wine with on my deck on a nice evening.  I didn't even want to sign the petition, but she made me feel so uncomfortable and was so pushy that I signed it to make her go away.

You'd think that would be it.  Oh no.  There are signs everywhere in the neighborhood reading "Join the Coalition".  Really?!?  You'd think we were sending in special operations forces on the private school.

Yeah, so it probably wouldn't be awesome for property values to have more sports facilities near our neighborhood.  Would it be good for the kids?  Definitely.  I loved going to football games when I was in school.  Give the kids that same opportunity with a nice, new facility.  Sorry, Cat Lady, you and I are gonna have to agree to disagree about this one.

Hopefully, she won't ambush me in my garage anymore.  I might just scream next time.

Friday, May 20, 2011

What is Your Excuse?

Jack's more likely to break these than create the next
fresco on the Sistine Chapel.  On a side note, are
there frescos on the Sistene Chapel?  Art history fail.
Yesterday was a Gymboree day.  Gymboree brings with it Jack's teacher "Albert", inevitable sensory overload, and a Gymbo stamp on Jack's hand that always ends up smeared on his face.

Here's the deal...I am okay with talking about Jack's autism to friends.  I'm okay posting about it on my blog.  For some reason, I'm not yet okay talking about it to strangers face-to-face.  It's the reason why I haven't gone to any support group meetings.

It's not that I'm embarrassed, because I couldn't be prouder of how strong my little guy is in the face of the big, bad world.  I guess I just don't feel like I could tell a stranger yet without either a) bursting into tears, or b) feeling like it is none of their business why my kid acts the way he does.

I get asked questions a lot about Jack.  Does Jack take art classes at the Woodruff Arts Center?  Yes, that was an actual question I got about him.  No, my kid isn't Rembrandt, but thanks for asking.

Honestly, it scares
me, too.  Gymbo looks
kinda stabbity.
The most common question I get is, Why is he so upset?  It gets tricky answering that.  The simple answer as to why Jack gets so upset so easily is because he goes into sensory overload.  I typically just say something like noises bother him.  The problem with that is that it always gets me a look or two, because most kids Jack's age don't start crying and screaming when someone shakes a tambourine or blows their nose.

Yesterday, during Gymbo time, "Albert" was yelling for Baby Gymbo who was hiding illusively under his shirt (read into that anyway you want).  Jack started freaking out.  He always does.  The Mom nearest to me turned and asked, What happened?  Is he okay?

I smiled and gave her my standard noises explanation.  No one at Gymboree knows that Jack is autistic except for the director and his teacher.  In a way, I felt ashamed that I am too nervous to discuss it with a stranger.  I shouldn't feel that way.  There is nothing wrong with the way Jack is...he is perfect.

Still, I'm not at that point.  Not yet.  I wear an Autism Speaks wristband, which everyone mistakenly thinks is a prostate cancer awareness band (?), but I'm just not at a point where I can rock my puzzle piece necklace for everyone to see.  I hope I can get to that point, because I admire the women who are not afraid of what people will think of their children.  I guess I still just don't want people to treat Jack any differently.  He's special, but he doesn't need pity or fear...just understanding.

Thursday, May 19, 2011

Show Me "More"

Not an actual picture of Jack.
Wow...what a week.  I apologize for not updating more often, but I am finding the new schedule to be overwhelming to say the least.  After Jack's special instructor comes tomorrow morning for his weekly ABA session, we'll have officially survived week 2 of our new therapy schedule!  It's getting easier.  We're slowly figuring it all out.  We don't really have a choice, but it has to become our new "normal".

So, how are we doing?  Well, it depends on when you ask.

The biggest thing to happen this week is that Jack has learned how to sign "more".  He's still not consistently signing "more", and I'm not positive that he knows the true meaning of the sign because he only signs it when prompted (we tell him "show me more" and he does).  He also only does it in certain scenarios.  Jack will sign "more" when prompted while in the bathtub (he signs "more" to get more bubbles from his bubble-blowing bath mat), when prompted for more Cheerios, and for his therapists when on the therapy swing.  I could really care less that he needs prompts, though, because HE'S STILL DOING IT!!!

The next snippet of progress we've gotten is that Jack can now eat applesauce.  Why is this so cool?  Well, the only applesauce he could eat before was baby applesauce.  For those of you who, like myself, taste baby food (don't judge...I won't feed my kid something I won't eat), you realize that baby food applesauce is much smoother than the Mott's version.  Well, my kid now eats the Mott's version.  This is huge.  HUGE.

Jack's Everest.
However, with every step forward, there are steps back.  In our case, Jack's been more temperamental, he's been stimming more, and he's, ironically enough, throwing up all of the foods he normally takes with ease.  I've blasted through more paper towels this week than I know what to do with.  I get discouraged when he throws up something like pureed soup, which he normally takes with no problems, because it makes me wonder if he'll ever be able to eat like a typical child.  I know that sounds awful, but it's easy to get discouraged when your kid can't seem to consistently eat any one texture.

We're going back and forth with the Floortime.  There are some days when he's really engaged, but there are others when he's really distant.  Tonight, he was more distant.  I think I'm putting too much pressure on myself as well.

I keep seeing myself fighting a battle against autism with every therapy session, but maybe I need to see it more like climbing a mountain.  I can only do it one step at a time.

I'll take our "more" and applesauce and run with it.  Two baby steps climbed on a very big mountain.  I know this will be a mountain that I'll likely never summit, but my hope is that I'll get close enough that someone looking up from below won't be able to tell the difference.

Monday, May 16, 2011

Just Keep Swimming


Jack has made it crystal clear this weekend that he will is not psyched with the new therapy routine.  The first week of therapy, during which we weren't on our full schedule, Jack seemed to respond well.  Floortime didn't seem like that big of a deal.  We were getting little snippets of engagement.  I foolishly thought, This therapy stuff's going to be awesome!  We're getting some more engagement already!


I was wrong.  In came week 2, which was the first full week of therapy.  Suddenly, Floortime was about as desirable to Jack as a plate full of brussels sprouts and chicken livers.  In fact, all week, he's gradually been more and more disconnected.  Hand-over-hand feeding was going well the first few days, but now Jack gets mad before a meal even starts.  To his credit, his OT tells me that his finger strength is so poor that it probably hurts him to hold onto a spoon for too long.  However, the resulting hunger strike hasn't been helpful.

Jack's also doing a lot more self-stimulatory behavior.  We're seeing a lot of hand-flapping and finger posturing.  He's also doing quite a bit of verbal stimming.  The past few days, he repeats this sequence of "see-see, chu-chu, see-see, yeah yeah yeah yeah yeah" over and over again.

One positive is that he's making a noise that can be loosely interpreted to be "uh oh" and he's doing it somewhat in context.  He also seems to have made progress signing "more".  The problem is that he only does it during bathtime and he won't sign it himself, he takes our hands to do it.  Whatever...I'll take any progress I can get!

On the sensory/self-help end, we've gotten squat in terms of progress.  If anything, I'd say that the stress is causing him to stim even more than he ever has before.  The same on the engagement front; I think he's actually been worse this past week.  He's played with one toy drum, to the exclusion of everyone and everything else, for about an hour yesterday.

As we take the leap into our 2nd full week of therapy, I'm keeping my fingers crossed that this becomes "routine" sooner rather than later.  I hate seeing my little boy seem so locked into his own world.  I also hate seeing him struggle.  In the words of Dory, "Just keep swimming, just keep swimming, just keep swimming, swimming, swimming."

I don't think there's anything else I can do but that.

Sunday, May 15, 2011

Babysitter = Success!

Call me a dork, but I LOVED these
books as a kid.
With my brother-in-law's impending high school graduation, we needed to bite the bullet and do a trial-run with a non-family member babysitter.  Now this is a big step for typical children.  For a special needs child, it's another thing entirely.

Admittedly, I'm probably a more paranoid parent than most.  Here is just a snippet of what has occurred in the past with babysitters who were family members:

  • Throwing up during meals
  • Throwing up at bedtime
  • Throwing up for no real reason
Jack can either be the easiest kid to babysit, or the hardest.  Hard because of the reasons listed above.  Easy because, like many other autistic kids, he prefers to play by himself.  So, he can be low-maintenance.

We were fortunate to find a sitter who had worked with autistic children before.  We decided to go out to dinner so that Jack could have a trial-run with her.  She was super, super nice and I felt optimistic about the situation.

In the end, I had every reason for optimism.  Jack seemed to do well and seemed happy and at ease when we got home from dinner.  He was also in different clothes than we left him in.  Yep, the sitter got to experience the fun of Jack throwing up.  I felt horrible for her...no one wants to clean up throw up.  Believe me, it's on the bottom of my list of fun things to do.

However, she was unfazed.  It was like it was no big deal at all!  Woo hoo!  My kid threw up and it didn't scare her away!  Babysitter for the win!  She was even willing to come back for my brother-in-law's graduation!  Hallelujah!

Now, hopefully Jack won't throw up worse next time and scare her away.  Good sitters are hard to find.

Saturday, May 14, 2011

Cupcake Therapy

It's a party in my mouth.
Today has been a rough day.  Jack had one meltdown that lasted 30 minutes and another that lasted over an hour.  The reason?  Well, the first meltdown was because we were coming downstairs to play in the den.  Jack has a really hard time transitioning from one activity to another (thank goodness his OT's working on this), but this transition has been the hardest one to make lately.

The second meltdown was because of lunch.  A large part of Jack's therapy right now is feeding therapy, because Jack was determined to have a severe feeding disorder on top of his PDD-NOS.  So, every meal is a little bit of therapy unto itself.  We're working on self-feeding and making Jack pull food off of his spoon by himself.  I think it's starting to get to him.  The past couple of days, Jack has resisted mealtime like it was a doctor's appointment.  Today, he just had a meltdown for over an hour.  I got kicked and slapped until it was time to put Jack down for a nap.  There was no sign of the meltdown ending, so I put him down for his nap and listened to the meltdown rage on over the monitor.

Autism: 1; Reinventing Mommy:  0.

It's been a bit of a Debbie Downer day as a result.  I really hate feeling sorry for myself, but there are some days that I can't help but think that this isn't what my life was supposed to be.  We've had a lot of meltdowns this week, which I can only assume is due to all of the changes we've gone through.  We've started our full Floortime schedule, plus ABA, ST, and OT within the past week and a half.  I think Jack's had enough.

It's so hard, because as a parent you know that all of this therapy is what is going to help him hopefully achieve independence one day.  On the other hand, you see the demons come out in your child and hear their sobs and it's hard not to feel really crappy.  He can't help it; he's just done.

Days like today, there's only one solution:  Cupcake Therapy.

CT is a special kind of therapy for Mommies.  It involves luscious mounds of frosting atop a perfectly moist cake with toppings sprinkled in for good measure.  The calorie count is obscene.  Personally, I think that CT hasn't been prescribed for me at an appropriate frequency.  I need someone to rewrite my prescription.  My favorites are the Reese's PB Cup ones pictured above from Cloud 9.  They rock my face.

I might throw a banana daiquiri in for good measure, too.

Friday, May 13, 2011

The Little Things

Yay!  It's Friday!  Do you know what that means?!?  We survived the first full week of therapy!  Woo hoo!  Of course, survived is a relative term.  I have bruises, Jack is on a bit of a hunger strike, and there have been tears all around, but we did it!  We can do this!

This Friday has been a pretty good one, too.  Jack's ABA therapist was busy today, so she came earlier in the week.  That meant no therapy other than our daily Floortime.  It has been a nice start to the weekend.  Floortime's starting to seem easier as well.

I started the day off with my annual check-up with my midwife.  As a side-note, I highly recommend seeing midwives and/or nurse-practitioners for your health-care needs.  These women (and I guess men, but I've never met one) are so kind, compassionate, and take the time to get to know you, your family, and your needs.  If it weren't for the careful monitoring of my midwives, Jack might not be here today.  I might not be here today.  Luckily, I'm in excellent health and good for another year.  This is a good thing, as I plan to be immortal.  Someone needs to watch after Jack, so I just plan on living forever.

After that, Jack and I decided to head to the park.  It wasn't a pretty scene at first.  Jack's OT wants him to start being more independent, and that includes not being carried everywhere.  My suspicion is that Jack doesn't feel sturdy enough on his feet, but my back will be destroyed if he doesn't gain some independence in this area fast.  So, I made him walk from the car to the playground.  This is one of the few areas that I'm initially letting him walk, because he won't hold my hand and he has a tendency to not look at where he's going.  There are no cars in this area, so it's a safe place for him to get some practice.

Practice comes with a meltdown, though.  Poor guy, he just doesn't understand.  Jack will take 2 steps, then stop to scream and hand-flap.  It makes for a long, slow walk to the playground.  This is bad enough, but today we kept passing people who would laugh and point at him.  Not helpful, people...not helpful at all.  Finally, Jack realized that he doesn't have to walk if he flings himself to the ground and tantrums.  He's got me there.  Nothing I can do will make him get up, so I finally give in and carry him.

Once we get to the playground, Jack's all stimmy.  He runs over to the sandbox and starts finger-posturing.  Oh boy.  Shortly thereafter, he heads for the swings, which I expected.  He's clearly disregulated, so swinging helps him get himself under control.

A little while into swinging, a girl that I went to elementary, middle, and high school with comes up to say hi.  She's there with a friend of her's and her little boys.  I always get nervous when I see people who I went to school with, because let's face it, I was still am a dork.  Also, as ashamed as I am to say it, I don't want people to judge me or Jack.  The recent memory of Jack's meltdown when coming into the park is fresh in my mind and I can't help but wonder, Did she see that?

She and her friend were very nice.  It was refreshing to get to talk to other Moms.  Most other Moms shy away from me and Jack.  It was nice that someone didn't.

Soon enough, it was time to leave.  Jack had his 30+ minutes on the swing (although he refused to hold on to the chains on the swing like his OT wants him to do), so we went to say goodbye.  I did hand-over-hand assist to make Jack wave bye-bye.

Then, the best thing that has happened all week happened!  The friend of the girl I knew from school has a little boy that looks like he's around Jack's age.  He walked up to Jack, smiled, and gave him a big hug.  I briefly got a feeling of panic, because Jack doesn't like to be touched, but the little boy backed away after the hug before Jack could swat at him.  A kid gave Jack a hug!!!  I looked at the little boy and said "Thank you", making sure to sign it so that Jack could see the sign.

Little boy, you have completely restored my faith in humanity with that one hug that you gave my little guy.  You didn't laugh at Jack the way other people do.  You didn't see him as different.  That warmed this Mommy's heart more than you'll ever know.  Other Moms may not bat an eye when someone hugs their kid, but that NEVER happens to my kid.  EVER.  So, thank you for that.

We left the park and headed home.  I probably was grinning from ear-to-ear, despite that fact that Jack was throwing himself to the ground and refusing to walk.  We came home and I heated up leftover Chinese food.  I'm watching episodes of How It's Made and I'm in absolute nerd heaven.  It's the little things, right?  All is right with the world.

Thursday, May 12, 2011

He's Not Contagious

I can't help it if my kid attracts preschool girls the
way Justin Bieber attracts tweens.  My kid has
better hair, though.
Oh the world of parent competition.  Does it know no boundaries?

I, personally, have checked out of the competition game.  My kid is nowhere close to other kids his age in terms of milestones, so I'm not playing anymore.

Some people just piss me off, though.

Today at Gymboree, Jack's doing his usual thing - stepping on and off, on and off, on and off of a play mat.  A little girl in his class, who shall remain nameless, comes over and smiles at Jack and proceeds to stand next to him and copy his movements.  Jack is "in the zone" and blissfully unaware of the little girl's presence at all, but she's giving him a look like she's just met Justin Bieber.  I'll admit, my kid's cute, and he does seem to attract the ladies.  Personally, I think the whole situation is cute...she's trying to connect with Jack and doesn't see him as different at all.  I think it's sweet.

Her grandfather suddenly wakes up from his daydream and rushes over, grabs his granddaughter, and says, "You need to leave that boy alone.  I don't want you playing with him."

What a slap in my face.  Jack, of course, is unaware of anything happening around him, but I feel the tears welling up in my eyes.  I fight them back, but I'm still shocked.  I thought it was wonderful that this little girl was trying to connect with Jack, trying to be a friend to him.  However, the ignorance of an adult halted that.  It is adults like that which will make that little girl look upon people with special needs with fear and distain one day.

It was all I could do to not say, "He's not contagious, asshole."

Should have listened to Mr. Mackey.
What makes this scenario even more maddening?  This little girl used to come to class with her mother.  Her mother who, might I add, came to class all strung out EVERY WEEK.  I'm about to introduce a little spoken of concept in the world of stay-at-home Moms...the self-medicator.  These Moms, for whatever reason, cope with their lives by drinking or doing drugs, but they still show up for all of the formalities of "Mom life", and the rest of us Moms just pretend it's not happening.  We've all encountered a self-medicator or two, but just give each other a look that says "I won't tell if you won't."  I mean, we don't see the Mom popping Vicotin or anything, so it's really not our place.  Besides, these are the Moms that will pull your hair and slash your tires if you do.  Besides, you don't want to ostracize her poor little girl.

It's still obvious, though.  There was the day that it was raining and she left her van door open during class because "Oops...I forgot to close it."  Then there was the day that she came to class in her pajamas and her little girl was in her pajamas as well.  She laughed when she came in, commenting that she just forgot to get dressed.  She'd slump in the corner of the room while the children all played.  I felt sorry for her little girl.

The past few weeks, she hasn't been the one to bring her little girl to class; it's been the grandparents.  I do understand that grandparents have a very different view of autism.  Those who have an autistic grandchild or great-grandchild know a bit more about it, but in our grandparents' generation, people who had autism were either labeled as "mentally retarded" (which is an awful term) or they were institutionalized.  However, autism wasn't contagious then, and it certainly isn't now.

What's even worse is that some people say things right in front of Jack and myself.  Those are the few times that I am so glad that Jack doesn't understand what we say, because I don't want him to feel the hurt that those words bring.  I guess it's hard to understand why people look the other way with the self-medicating Mom, but they stare, point, and make rude comments about the autistic child.

I would ask you which is more worthy of understanding and compassion.  Yeah, that's what I thought.

My advice to anyone reading this is to encourage your children to reach out to someone who is different.  My son needs friends just as much as everyone else does.  He may not realize it yet, but he does.  What's more, encouraging your child to reach out to mine is about the nicest thing you could do for me.  Also, think twice about what you say in front of your children about people with special needs, because your kids will remember it and it will form their impressions on disabled people for years to come.

Wednesday, May 11, 2011

Stabbity Sally's Happy Playground

Be careful, children.  Stabbity Sally's
watching you!
Thanks to Brian for the link to the following blog post.  If you think that playgrounds in the U.S. can be a little less than safe at times, check out where the little ones of Moscow go play.  My personal favorite is the stabbity doctor, because that's going to make your kids scream less at check-ups.

Why Floortime?

Many people have asked me about Floortime, which is primary behavioral therapy that Jack receives.  In contrast, Jack also receives ABA (Applied Behavior Analysis) with a therapist for one hour weekly.  Those of you familiar with autism might know that ABA is most common behavioral therapy, and considered the "gold standard".

So, you might be asking why Jack receives DIR/Floortime instead of ABA.  Before we get ahead of ourselves, let me give you a rookie's perspective of the two treatments:

ABA focuses on using repetition, reinforcers, and prompting to teach a child behaviors.  It has been seen that ABA leads to gains in IQ, language, adaptive (self-help) skills, and academic performance.  For example, when Jack is doing ABA with his therapist, she'll prompt him to perform an action with very short phrases, like "Jack, sit on chair."  After the first prompt, if Jack doesn't respond, she prompts him again, then makes him sit down.  She then says something like "Good sit" and then has him get back up.  She repeats this over and over again until he's doing the behavior on his own.  His "reward" is the praise he gets.  For some behaviors in some circumstances, he gets a Cheerio for his "reward".  Typically, therapists administer ABA, though parents can be trained to do it.  Some children receive up to 40 hours of ABA weekly.

DIR/Floortime is a totally different beast.  The DIR (stands for Developmental, Individual Difference, Relationship-Based) model focuses on building the foundation for social, emotional, and intellectual development rather than focusing on skills and specific behaviors.  The crux of the DIR model is Floortime.  Floortime is centered around a child's natural emotional interests, whatever they may be, while also challenging your child towards mastery of social, emotional, and intellectual milestones.  So, you get down on the floor and try to insert yourself in your child's activity, then you do things like be playfully obstructive to force your child to voluntarily interact.  If Jack and I are playing, but I block a doorway he wants to go through, he has to deal with me in some way.  If he moves me out of the way, that's interaction.  The idea is to get your child to WANT to perform a behavior rather than to be conditioned to it.  Parents are the usual providers of Floortime therapy, but therapists can and do provide it as well.

So, why Floortime?  First, and foremost, because our developmental pediatrician believes in it and believes it will help Jack.  The clinical social worker at his office is training to support Floortime in the patients in their practice, so it's a very supportive environment for that therapy.

Second, I believe in it.  I want my son to WANT to interact with me and look me in the eye.  I don't want him to only do it because he's been taught that you look people in the eye.  I want him to have the desire for interaction.

What about some of the specific behaviors?  Well, that answer is two-fold.  First, I know that stimming and the other "behaviors" that scream autism are of the most concern to most parents.  After all, no parent, and I mean NO parent, wants people staring at their kid.  That's totally understandable; however, I feel like the "staring" is everyone else's problem, not Jack's.  Sure, I'd love for people to not glare at him, but it's who he is.  He's not bothering anyone; he simply acts different.

Second, Floortime works to correct specific behaviors by showing children alternatives for that behavior, like social interaction.  You don't have to tell a kid "NO" to get them to stop a behavior.  Giving them an alternative to the behavior works, too.

Now, I might change my mind the further into Floortime therapy we get, but for now we're gonna give it a shot.  That's the best we can do.

Monday, May 9, 2011

Therapy is Hard on Mommies

The waiting room, a.k.a. the Mom torture chamber.
I knew that starting therapy would be a big transition for Jack.  Therapy brings with it the presence of 3 new adults in his life, particularly when he's not a big fan of interaction as it is.  It also brings a new routine which, as always, will take some getting used to.

No one mentioned how hard it would be on me.

First, there is nothing harder on a Mom than sitting in a waiting room, hearing your baby cry, and not doing anything about it because all of this therapy is for the best.  It's a good thing that no one is in the waiting room when I'm there, because I catch myself fighting off tears often.  I hear the therapists say that Jack is doing well, but all I hear is the wailing.  I hate feeling so powerless.  I hope that Jack gets used to it soon.

Second, with therapy comes the initial evaluations.  Jack had today what was his 5th evaluation in about 2 months.  He has had his hearing screened, had a developmental evaluation performed by the state, had a developmental evaluation performed by the developmental pediatrician, had a speech evaluation from the SLP, and today had his OT evaluation.

It always seems like evaluations are the same.  The clinician verbally reports positives to you - he made some good eye contact, he interacted, there is progress to be made that can be made.  Compared to some kids on the spectrum, your kid has some positives going for him.  On the other hand, you get the written report and read all of the problems that they see in your kid and it is always worse than you imagined.  They don't know when he'll be able to start learning a communication system.  They don't know when he'll be able to self-feed.  They think he's in his own little world.

Us Mommies wait until later, when no one is looking, to let the tears flow.  Hearing that your child who is now a 2-year old has the language skills of a 7-month old is heartbreaking.  To all of you Moms out there who think at some point, "he/she just won't stop talking," I would give anything to be in your shoes.  Anything.  The day Jack can talk, I'll hang on every word he says.  Every single one.  I'll have been waiting so long to hear them.

The day that he can tell me where he'd like to go eat, we go to a restaurant without a sensory meltdown, and he can eat food like every other child does, I'll take him wherever he wants to go.  Chops?  Sure!  I would give anything to take my son out to lunch.

The day he can tell me he loves me and give me a kiss and a hug will be one of my happiest.  I will be so happy the day he wants a hug not because he wants sensory stimulation, but because he wants affection.

So, I'll keep sitting in that waiting room, wiping away the tears, and hoping that nobody notices.  I hope that both Jack and I will be rewarded for doing so.

Moms and SLPs Like Ikea

Welcome to heaven.  Just past the pearly gates,
you'll find heaping plates of Swedish meatballs.
Enjoy your stay.
Jack's first speech session was last Tuesday.  Among other things, she suggested that I get Jack some new spoons to help him eat a little easier.  The ones she suggested could be found at Ikea at the insane price of $1.99 for an 18 piece set.

SLP and Ikea for the win!

For those of you very familiar with ATL, you will know that Ikea is located at Atlantic Station.  I live just north of the perimeter, so it's not too far, but definitely not a trip you make every other day; it's about a 30 minute drive from my house.  However, in the name of good oral-motor skills, I ventured out towards Ikea sans toddler (Brian took toddler duty).

The iconic Ikea cinnamon bun.  I dare you not to
drool.
For you poor souls who have never been to an Ikea, I pity you.  Seriously.  You enter the store and the first thing you encounter is the luxurious smell of fresh cinnamon buns.  That, and pictures of plates heaping over with Swedish meatballs and mashed potatoes (only $3.99 in the restaurant!).  I was with my MIL, so we decided to stop at the Bistro for a quick bite.  It was lunchtime, but a cinnamon bun was calling my name.

After eating a bun about the size of my noggin (for only $1!), we headed into the store.  Now, Ikea is set up so that you essentially have to walk through the entire store in order to get to the checkout.  It winds around like a maze.  You are tempted by bargains at every turn.

Speaking of bargains, if you didn't notice with the prices I mentioned, everything at Ikea is ridiculously inexpensive.  You can furnish a small apartment for about $500 with Ikea furnishings.

The equally iconic Ikea Swedish meatballs.  I'm about to
be in Scandinavian heaven.
Bear in mind, I ventured out to Ikea with the intention of buying 2 sets of oral-motor-skill-building toddler flatware for a grand total of about $4.  However, that is not how the dark maiden known as Ikea works.  She is a temptress.  You do not leave with only what you seek.  You leave with so much more.

Like the food storage containers that were only $3.99 for 34 pieces (what a bargain...I can't turn this down!).  And the AAA batteries that were $2.99 for a 10 pack (Jack's book pal eats AAAs for breakfast...why not?).  And the pizza cutter (mine is broken...and this is only $0.99!?!  Holy Swedish meatballs!!!).

Probably the coolest thing I got was the super adorable children's table for Jack.  Now, Jack already had one table, but we're setting up a therapy room in his upstairs playroom for him to use when his ABA therapist comes to work with him, so we needed to move his table upstairs.  However, Jack loves having a table down here, so the only solution (obviously) was to spend more money on a freakin' cute one for down here.  Of course, this is Ikea, so I got a table for $24 and a chair for $12!

Duh...WINNING!

I'm sure that Brian isn't psyched when I come home from Ikea.  The one thing about Ikea furniture is that it all requires assembly.  So, Brian inevitably has to pull out the tool box and earn some man cards.

Certainly, I'm not the only Mom with a love-affair with Ikea.  They have the absolute cutest children's furniture.

Next time, I'm getting the Swedish meatballs.

Thursday, May 5, 2011

Gymboree, a.k.a. The Birdcage

What can I say, Albert...sensory overload's a bitch.
On a totally unrelated to this post note, I had no idea this would turn into an autism blog.  Really.  It's not what I would have imagined for myself months ago when I started this blog.  However, it is what it is.  This is my life and autism is a big part of it now.  I'll try to insert as much irreverence into my life as possible.  Buckle up, it's gonna be a bumpy ride...

Today we went to our first day in level 5 at Gymboree.  Jack's developmental pediatrician thinks it's important for all children with an autism spectrum disorder to do one "mainstream" activity per week so that they are exposed to typically developing children their own age.  Of course, the DP didn't mention that these mainstream activities would be gut-wrenching for Mamas.  It's really hard seeing other children your child's age (or younger) who are light-years ahead of him developmentally.

The folks at Gymboree are fantastic.  They are totally supportive of Jack and want him to have a place at Gymboree as long as he needs it.  They also understand that Jack just can't engage in most of what they do, but the teachers still try to come talk to him occasionally.  They are fantastic people, not just to kids with autism, but to typical children, too.

Nothing says "Welcome to Gymboree" quite like this.
Jack had been in level 4 until just a week ago.  The criteria for moving up to level 5 was engaging in pretend play.  Well, kids with autism have extreme difficulty with this, so it could be years before Jack can pretend play.  The wonderful folks at Gymboree agreed to age-promote Jack from here on out so that he's with peers his age (he was the oldest in his other class by about 6 months).  So, up to level 5 we go.

Jack now has speech on his regular Gymboree day, so we had to move to a different day.  That meant a teacher switch, which means a whole new sensory experience for Jack.  Today was rough, really rough. However, there was one thing to make me smile.  Guess who our teacher is?!?  Give up?  It's...

A 23 YEAR OLD VERSION OF NATHAN LANE!

I swear to you.  He sounds just like him...except he's about 30 years younger.  When he was saying, "Welcome to Gymboree" I halfway expected to hear "Welcome to the Birdcage!"  The resemblance to Nathan Lane's character in The Birdcage is so uncanny that I cannot help but smile anytime I hear him.

Hopefully that smile doesn't turn into all-out embarrassing laughter.

So, I kept calling him "Albert" in my head.  For those of you who know me well, I have a tendency to label people.  My next door neighbor in my old apartment was "Baby Mama".  There was a neighbor that I always saw smoking, so I called him "Smoking Man".  There was the "Pimp" downstairs (so labeled because of the disheveled women coming out of his apartment every morning).  My neighbor across the hall was "Scarface" because he looked like the character by the same name in Half Baked.  


Those of you who know me well also know of my tendency to call people by their labels, too.  I called "Scarface" that one day.  He was a really nice guy and laughed it off.  What can I say, I'm an idiot.

Now, I have a reason to smile at Gymboree.  Jack may not have enjoyed his first day in the new class, but Albert provides me just enough comedy relief that I think that the sensory overload meltdowns might be bearable.

Wednesday, May 4, 2011

Day Off? What's That?

What I would pay for a "meltdown" timer
like the one installed on this child.
It is becoming increasing apparent to me that autism doesn't rest.  It doesn't take a day off.  It's there all the time.

Even when your kid is having a good day, there's stuff you've got to deal with, like the non-stop schedule of therapies, Floortime, and the constant advocacy you must do to get what your child needs.

Some days are better than others.  Some days, there is a meltdown awaiting you in which you get a roundhouse kick to the face...or two...or three.  Those days, there's a bag of frozen peas (to ice down my throbbing cheekbones) and a glass of wine to greet me after Jack goes to bed.

However, some days are awesome.  Kids on the spectrum really aren't any different from other children in that respect.  They all have their good days and they all have their bad days.  Our days just bring different challenges.

My kid just gets set off by different things than your kid.  My kid gets upset if there are too many people in the room, or if we go to a new place, or if the noise level is too high, or when we transition from one activity to another.  My kid also melts down if he's frustrated, which is really no different than your kid, except that my kid can't express himself verbally or non-verbally to let me know what he wants.

My kid also just breaks down for no real reason.  I'm sure typically developing children do this, too.

I've finally decided to cut myself a little slack, though.  During Jack's nap time, I'm gonna relax.  I've got to, or we all suffer.  As they saying goes, "When Mama's not happy, nobody's happy."

Tuesday, May 3, 2011

Insurance Reform Worth Fighting For

This is me after a rousing day of battling with the
insurance company, aka "The Man".  Note that I've lost
all appearance of sanity and that something's on fire in
the background.
This is going to sound very anti-Republican of me, but I have now become an advocate for insurance and health care reform.  In fact, I don't think that Obamacare went far enough.

Before all of my Republican friends out there start burning effigies of me, allow me to explain.  Since my son's PDD-NOS diagnosis, I have discovered how little the insurance companies are willing to cover treatment.  If my son had a medical problem that could kill him, like cancer, I could have checked my son into the hospital and started treatment almost immediately.  However, since my son has a life-long disability that will not necessarily cause him any "medical" problems, they want to fight me every step of the way.

Here is what my son, and most children with autism, need - speech therapy to address the typical lack of speech (as in Jack's case) or delay in speech, occupational therapy to teach life skills, fine motor skills, and, in some cases like Jack's, help with sensory integration, and behavioral therapy to work on engagement and social skills.  All children with autism need help to achieve their full potential.

What I feel the need to consume after a long
day battling "The Man".
There are two means to getting this therapy.  First, there is private therapy.  Second, there are government services to provide it.  The Individuals with Disabilities Education Act (IDEA) provides two mechanisms to receive services.  Part C, known as Early Intervention, or Babies Can't Wait in Georgia, requires states to create a means of identifying children with disabilities and developmental delays and providing early intervention services to address these delays.  This is available for children ages birth until their 3rd birthday.  Once children turn 3, they age into IDEA Part B, which requires public schools to provide a "free and appropriate education" for children with disabilities from age 3 to 21.

The problem with Early Intervention and Part B is that governmental organizations are subject to budget cuts.  It is our most vulnerable citizens who suffer.

Of course, there is always private therapy.  The problem with private therapy is two-fold.  One, it's expensive.  I mean, really expensive.  We're talking $100/hour or more; I'm finding that more is the norm.  For a family who has a child who requires multiple different therapies a week (Jack will receive 4 different therapies weekly), this is an overwhelming financial burden to pay out-of-pocket.

But seriously...this is what I REALLY feel like consuming.
So, what about insurance?  Well, as I'm finding more and more, insurance is a business.  We pay hundreds of dollars in premiums a month not to get the equivalent in care.  In particular, for therapies like speech, insurance often provides no coverage for developmental delays.  Insurers consider speech, in particular, to be an "educational" problem and not a medical issue.  In our case, it does provide coverage for autism spectrum disorders, though.  However, most insurers cover a limited number of visits to therapy a year.  In our case, it's 20.  For those of you who have never had to put a child through therapy, I'll tell you that there are no disorders that can be treated with only 20 visits a year.  Jack is to receive 1-2 one hour sessions each of speech and OT weekly.

After those 20 visits are up, you have a couple of choices.  You can pay out-of-pocket and put a second mortgage on your house.  Unfortunately, I've heard that this is not uncommon.  Or, you can apply for a Katie Beckett waiver for Medicaid, which waives the income requirements for children who have disabilities with substantial medical costs.  If you get Medicaid, you're in good shape.

Do you know what's really horrid?  In the face of a life-changing diagnosis like autism, parents must choke back the tears because we have to fight for services and coverage for our children.  We have to fight as though our lives depend on it, because our child's future does depend on it.  Believe me, as I've learned, it is a non-stop fight and a full-time job unto itself.

Do you see where I think we might need some reform?  There are multiple points in this process to possibly fail these children.  The insurance companies have no incentive to provide treatment for our special needs children because many, like Jack, if untreated will not have more medical problems, but they won't progress, either.

Why should this be a concern?  Obviously, I have a vested interest in seeing my son succeed, but why should you?  Or, more realistically, why should you have a vested interest in seeing any special needs child succeed?  The answer's simple...if 1 in 110 children right now have an autism spectrum disorder, by the time my son is in his 50s, it will be 1 in 110 adults.  If these children aren't given the tools to help them achieve full independence, they will require more services (and taxpayer money) in the future.  We will have to deal with this surge of autistic children entering the adult population in one way or another.  On the other hand, if they can achieve independence and get a job, they'll be paying into the system instead of taking out of it.  They will be contributing financially to our economy.

So why should insurers bear the burden?  Because, like so many things, private businesses do this better.  By providing full coverage for autism spectrum disorders, the estimated cost increase to premiums is only 1%.  Remember, if 1 in every 110 children have an autism spectrum disorder, this doesn't seem like a huge increase to provide treatment to 1% of our population.  It will cost more to provide 50+ years of adult services to my child than to provide intensive early intervention now.

We should also be advocating for increased funding to Early Intervention agencies and school systems.  People complain when schools cut the music program, but schools cut special education services and without as many vocal complaints.  Realistically, which can we do without, music or special education?  Ideally, we'd have both.  Ideally, we'd decrease funding to other programs and increase it to education, because we'll see no better return for our dollar for dollar investment than to put it into our children, regardless of whether they're special needs, autistic, or just the typical child.

So, there's my soapbox for the day.  If you agree with me that this system seems to fail our children, I'd encourage you to do something about it.  Go to Autism Votes and see how you can get involved.  Better yet, stay informed about what's going on in your school system.  All of our children, not just mine, depend on it.

Monday, May 2, 2011

Walk Beside Me

Don't walk behind me; I may not lead.  Don't walk in front of me; I may not follow.  Just walk beside me and be my friend.  ~ Albert Camus


1 out of 110 children.  1 out of 70 boys.

My life has taken on a whole new meaning.  I titled my blog "Reinventing Mommy", but I never really knew how true this would be.  I never knew that months later, this is exactly what I would have to do, reinvent myself.

You might be wondering what the numbers above represent.  That is the number of children in the U.S. currently affected by an autism spectrum disorder.

They say that when you've met one child with autism, you've met one child with autism.  They are all wonderfully unique.  Some speak; others are non-verbal.  Some have have little to no eye contact; others have relatively good eye contact.  Some are more social and affectionate, while others are very much disconnected from the world.  Some kids are low-functioning, some are high-functioning, and some are smack in the middle.

If you have met Jack, you have also met one child with autism.

Jack was recently diagnosed with PDD-NOS, which stands for Pervasive Developmental Disorder - Not Otherwise Specified.  It is a form of autism.

If there is one thing that I hope Jack can teach you all, it's that autism doesn't define a person.  He is a happy and healthy little boy.  He loves to play with his toys and his trains.  When he smiles, he lights up a room.  He faces enormous challenges every day as he currently cannot communicate his wants and needs to the outside world, but he is happy with who he is.  This is his life, and he lives it with no regrets.  While he is different than your child, he is also similar.  He is, first and foremost, a child.

Someone recently told me that Jack was one of God's special children and I am his mother because I can handle this.  Sometimes I waiver about the "handling this" part, but I agree that Jack is a special child.  He is one of the most adorable little boys I've ever seen (admittedly, I'm biased).  He is passionate about trains.  He does not speak, but he makes little noises in the sweetest voice.  He does not see himself as different.  What a wonderful lesson to take from such a little boy.

Jack has taught me so much.  He has shown me that I can be stronger than I ever imagined.  He has made me a fighter.  He has shown me to take such joy in the smallest accomplishments.  When he manages to look me in the eye, which is really hard for him, and I see his beautiful eyes, I know it's all worth it.

My son has autism, but I will not let autism have my son.

If Jack can teach you one thing, it is understanding.  Children with autism don't have a certain "look".  They all behave differently.  Approach people with an open mind.  Approach people with understanding.  Our kids aren't "brats", they experience the world differently from the rest of us.

If you didn't before, you now know one person with autism.  And he is a wonderful person to know.