When early intervention isn't enough

There has been a lot of talk, with the recent horrible events in Connecticut, about the current state of our mental health system.  In Michigan, the tragedy happened just days before our governor was faced with passing legislation that allowed CPL holders to concealed carry in school.  Governor Snyder vetoed this bill, possibly due to mounting pressure that questioned if now was the time to pass such a bill.  But what our state (and many others) are continuously NOT facing is the growing problem with our mental health system.  Now, the shooting in Connecticut may not have been stopped by the shooter receiving additional mental health services...its too late to say.  But the whole situation reminded me of a Time Magazine article that I'm sure will hit home for parents of children not just with autism or ASDs, but also other mental health issues, entitled "Growing Old With Autism". http://www.time.com/time/magazine/article/0,9171,1898322,00.html

Now, more than ever, it is SO important to remember that developmental disorders and mental illnesses are not cured by early intervention.  It can help, sometimes even greatly so, but developmental disorders are LIFE LONG issues, and with so much of the research funding being shifted to early intervention services and finding cures (not that we shouldn't be focused on these issues as well), this money has to come from somewhere, and often comes from services once dedicated to adults with developmental delays or mental illnesses.

The lack of programming for adults or aging teens with developmental disabilities is even more evident in the recent congressional hearing on autism.  https://www.youtube.com/watch?v=6zGqUfvFDI4. Not only did Chairman Issa acknowledge that the hearing was about a year too late, I ask that you pay special attention to Del. Eleanor Holmes Norton's questions related to adults or aging teens that did NOT have access to early intervention, and the response of the panel being questioned (min 59:00 thru 1hr min 03).  Neither member of the panel had any VALID response to her questions about what we are doing for adults with autism.  They all but admitted there are little to no services out there.  

How do we expect communities where these kids were once shoved (at times tragically so) into mental institutions to now know how to recognize the traits of developmental disorders?  How do we integrate these adults into the public, when more and more in-patient facilities are being closed with unfulfilled promises of forthcoming "substitute programs?"  How do we ensure that a police officer can recognize the difference between a developmentally delayed adult nervously fidgeting, and a criminal going for a weapon?  A recent Detroit Free Press investigation noted that most often, the mentally delayed or disabled end up in jail because the public does not know what to do with them, and there are even times the justice system doesn't have acceptable solutions either.  Its time to take a stand and MAKE our government deal with this (on federal, state AND local levels)!  It appears that no one else will, especially not the CDC.

This boy, my angel, can be both a blessing and a terror.  There are times I fear him, simply because he does not understand safety hazards.  He doesn't understand why he can't just move someone out of his way, although he would never INTENTIONALLY hurt someone.  And there are times I fear FOR him because he also doesn't understand social cues.  And is he is going to (in part) be left to fend for himself in a society that often doesn't even recognize the difference between him and a "psycho?" We must do something, and fast!  Please support me in writing, emailing, and calling your local representatives to demand these issues be dealt with! 

We are soldiers!

Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.

They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.

“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”


Yesterday I received a call from Luke's school.  Thankfully it was nothing too serious. He had just tripped over his shoe lace onto a toy and they wanted me to be advised, since he can't tell me himself. 

The call came in around noon. By then I had already received two calls from his respite workers and a call from his therapist.  I was thinking that I'm lucky my employers have been so understanding about the amount of Luke-related calls I have to make or receive, and then today I see this little gem, "Autism Moms Have Stress Similar to Combat Soldiers", http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/, come across my Facebook wall. 

Boy, did it hit home! On average I receive at least five calls a week related in some way to Luke's special needs.  Checking on respite workers, setting up or revising in-home care schedules, making therapy appointments, dealing with issues at school...it's amazing how much time it takes.  I also miss at least a day or two of work a month which are in some way related to Luke's disability. Either he's in a "mood" and just can't handle making it to the bus on time, or he's up all night (which requires me to be up) and I can't manage to get MY ass out of the bed to make it to my job on time. This obviously and very quickly becomes added stress. Instead of making the most of the days off by catching up on sleep, I spend the day fretting that I'm upsetting my employers, (possibly to the point that I may end up without a job) and worrying over the loss of income. An employer can only be so understanding before they start to wonder if they are better off with an employee that doesn't have these "issues" to deal with.  

 


Chronically stressed may just another phrase for "how I feel on a daily basis" when you have kids, even "typical" kids. But the added stress of a high needs child that doesn't sleep well quickly becomes overwhelming, and making it through the day while sleep deprived can be quite a challenge. I don't think this is true for JUST parents of kids with autism, but I do think, in my experience, that parents of kids with special needs seem to more easily forget about that version of "normal" where the adults in the house actually get a little downtime...even if only during the usual sleeping hours!  But with a special needs child, that's not always possible. And as a single parent, I have no one to call for back-up. Friends and family can only handle (or desire to handle) so much. 

So my brain begins to play little tricks on me. Instead of realizing how run down I'm getting (which just makes me stressed and worried), I try to focus on the positive and NOT think about the fact that I've been awake and functioning for hours longer than any person should. In fact I take pride in it...."...only 2 hours of sleep and still going strong!"  I tell myself that as long as my brain feels semi-awake I'm just fine, but ignore the potential internal damage stress and constant fatigue is doing to my body.  And how can I best care for my child, possibly for the rest of my life, if I let my body go to hell? I think I actually forget is that running on empty 24/7 is NOT normal!  It may be MY version of normal, but its not healthy...and many times I don't even realize I'm in that cycle until its bordering on too late. Out comes the impatience, the short temper, the body aches and pains, the headaches, the depression, and the feelings that I just cannot take this a single second longer!

It may be very tricky to find ways around that little problem, but we should still keep it in mind.  While "Autism Moms Have Stress Similar to Combat Soldiers" may not be telling us anything we didn't already know, its still a nice reminder that it is IMPERATIVE that we try to carve out "me time" every single moment we have the opportunity. Because when your child spends most of his time singing at the top of his lungs (even at 4 a.m.), when you have little outside support and often end up feeling like the weight of the world falls on your shoulders (which may sound familiar to most parents!), that "me time" can be the difference between your own sanity and the alternative!

....and the band plays on...LOUDLY!

Tourettes, trichotillomania and dermatillomania...oh my!

It's been a whirlwind fall and I cannot believe we are already less than a month from Christmas.  But I guess its really no surprise time has been flying....the Brooks/Kopulos household has been a flurry of activity.  Enjoying a wonderful thanksgiving, preparing for Christmas, reading a barrage of nonsense e-mails about what should be a very simple white elephant gift exchange, etc.,....but of course most of this activity has revolved around Luke and his latest issues.  Luke apparently likes to collect diagnoses like most people save baseball cards or those cute little collectible figurines that really just gather dust (at least at my house).  The latest...a series of more specific diagnoses related to Luke's never ending OCD triggers and compulsions.  It begins:

So a few months ago I notice Lukie is furiously itching his head.  My first horrible nightmarish thought is he's gotten himself a case of lice....one of my BIGGEST fears in life (only second to cockroaches...yes I have a thing about bugs).  So I begin to madly check his hair and see this horrible mess on his scalp that seems to have nothing to do with bugs.  However, what I do notice is he seems to be pulling hair out as much as itching....NOT GOOD.  A quick check with the therapist that night and we have a new diagnosis...trichotillomania.  My reaction:  "I'm sorry.....tricka-what?"

"Trichotillomania is hair loss from repeated urges to pull or twist the hair until it breaks off. Patients are unable to stop this behavior, even as their hair becomes thinner." http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002485/

I'll spare you all the pretty pictures that go along with this diagnoses...but seriously...what in the f*ck?  As if my kid doesn't have to deal with enough!  But just wait...it gets better.

Just HOW does it get better?  Because I have this brilliant idea, or so I think. Just shave his head and he won't be able to grasp the hair and it will stop!  Right?  The next morning I shave his head while mentally patting myself on the back.  "Hell yes!  I am awesome!  I'm really starting to get this autism thing! I can do this on my own.  I don't need his father's help.  In fact, screw him!  I am mother of the year!"

Ok...well....maybe I started with the mental bragging a little too soon, because within a week he just switched from pulling his hair out to picking his skin off.  At this point, being the stellar intuitive mother that I am...I once again just assume the worst and think Lukie now has scabies.  After a mad-midnight google image search I realize his rash looks NOTHING like scabies (thank the sweet baby Jesus) and make yet another appointment with the psychiatrist.  Another day off work....unpaid.  Another rushed trip to the doctor in the hopes that they will tell me its nothing and I'm just imagining the scabs all over his torso.  Nope.  But at least we walk out with yet another new compulsion...dermatillomania.

"Derma - skin
Till - pull
Mania - madness" http://www.skinpick.com/dermatillomania

Skin pulling madness sounds about right, except for I think the one going mad is ME!  Now I feel like I gave my son another issue.  What's better...pulling your hair out or your skin off?  Watching your child hurt themselves in order to release anxiety is just OH SO FUN!  And even better when the doc throws in "...oh and that jerking he does...I think that's Tourettes."  Well of COURSE it is!  So nonchalant...so casual.  As if this is all just a big nothing....as if its the equivalent of saying "hey I think you're kid may end up left-handed."

I get these doctors are probably used to seeing these things day in and out, but as the parents I can assure them, it will never become NORMAL to hear these kinds of issues are residing inside your precious child.  My new year's resolution is to write to every medical school in the country and demand they provide better instruction on bedside manner.....how do you think that will work out? (probably about as well as writing every congress person and news agency in my state to ask for support for better services for the mentally disabled).

Do I sound like I'm complaining?  Yes?  Probably because I am.  But if I see another mommy blog about how hard it is to get an infant on a sleep schedule, or the trials and tribulations of cloth diapering I may just scream.  Cloth diapering....how quaint. At least the year is winding down, we have an increase in meds to test out (for Luke, however I'm still waiting for mine haha), and I'm currently planning a nervous break down for me sometime just after the first of the year.  I figure its the only way I'll get a vacation anytime soon!

Happy holidays!

Escape from Boring, Michigan

I do not live in the most exciting town to begin with.  Well let’s face it, its flat out boring.  If there were a fun factor rating system, I imagine Lansing would rate somewhere between watching grass grow and getting a colonoscopy.  For many families, boredom or cabin fever is a winter or spring issue, which summer usually cures.  However, for us, summer can be a bit of a problem.  The warmer weather means that the park, lake, etc. (all the Luke-friendly spots) are busier.  Not JUST busier, but busier with little defenseless children and their helicopter mammas.  This isn’t an issue for Luke so much as for me (and Ego doesn’t care for it either). Luke is content to just run down the smaller humans if they happen to be on “his” swing, or get too close to the small area of Lake Michigan that Luke has laid claim to.  Because I guess for Lukie, nothing says "fun weekend" like watching his mom explain to angry parents that her son’s sense of space is off, and that he really didn’t mean to barrel right over their precious bundles of joy. 

But, we’ve SOOOO done the local parks and playgrounds, and Lil’ Mama and I definitely needed some new scenery.  Throw in an invitation from a family member that hasn’t been seen in about 15 years, and I decided we’d risk a trip to the Detroit Zoo.  On a Saturday.  When the temps were pushing the high 90s and the humidity had turned the air into a sauna.  I come up with the best ideas, no?

I think we made it through about 1/3 of the zoo before we gave up.  The heat was ridiculous, and many of the animals had gone in search of cooler pastures.  Thankfully, neither of the kids noticed.  Lil’ Mama's only concerns were whether or not her painted face was holding, and where the cotton candy booth was located.  

The only excitement came when I convinced (ok...forced) Luke to ride the carousel.  His favorite playground toy is the merry-go-round, so I knew he’d love it.  Apparently I knew this more so than Luke, who wanted nothing to do with a platform full of seahorses and fish.  He growled...he screamed...he tried to make a jump for it right over the enclosure fence, but for once I was prepared.  I set Lil’ Mama on a horse, wrapped Luke’s arms around a shiny gold pole, and then wrapped myself around a pissed-as-hell Luke.  And prayed that the carousel started soon.  

The thing about praying is its really the same as wishing, and it turns out that wishes do not make the Detroit Zoo carousel go ‘round (in fact the only thing that DOES is $2 per person).  But finally, after what seemed like a decade, the ride began.  And sure as shit, as soon as it started up, I could feel Luke immediately relax.  He closed his eyes, threw his head back, and just enjoyed the sensation of spinning.  Maybe one day this kid will get that I know him better than he thinks. 

I'm sorry....I should WHAT?

"You should write."

It's a comment I've heard more than once in the past year (and yes, from more than just my mom).  Even though I have no writing experience, and even though I've never shown an interest in writing. But friends and family say that stories like mine need to be told.  I think this may, in fact, be code for "I'm tired of listening to this shit," or "you talk so much you may as well write it down."  BUT we're gonna pretend that said friends and family really think I'm fabulous and just waiting to be discovered.  And that one day a movie will be made of my life's work (a real one, none of that lifetime womens' struggle nonsense).  Seriously mom, it could happen (I'm assuming she's the only one reading this).  So now enter the players...

Player #1 - Jennifer ("Me") 

I'm sure you'll learn more than you ever wanted to know about me as this progresses.  But, I want to be played by Natalie Portman, because I think she's just as beautiful and smart as I.  Or I am just as beautiful and smart as her?  Regardless...this brings me to Player #2...

Player #2 - My Ego 

As its a very healthy size, it feels it deserves its own star status.  It wants to be played by Angelina Jolie of course, because it would have to be someone with slightly more star power and beauty than Natalie.

Player #3 - Lucas ("Lukie") 

He's my 14-year-old-going-on-4.  Or maybe 6.  At certain times, maybe even 8ish. Since he hardly speaks, its somewhat difficult to gage.  Classic autism will cloud up a situation like that.  If its still even called classic autism.  Classic...severe...low-functioning...who the hell cares?  I can assure you that what is SHOULD be called is "life is a bitch, and here's your proof."  My child isn't the proof...he's generally an awesome kid.  But autism, and the way it makes him behave at times, is all the proof I need that the line about God not giving you more than you can handle is a complete crock of shit.  Either that, or God got the address of my uterus wrong.  Oh, and did I tell you this is NOT going to be one of those "autism is workable and autism will be like a gift from the fairies every day of your blessed life" kind of blogs?  If that's what you are looking for, you may want to click that little "back" button now.

He needs to be played by a young Johnny Depp.  Only Depp would get how Lukie can be goofy, lovable and a little frightening all at the same time.

Player #4 - Sophia ("Lil Mama") 

My 5-year-old-going-on-25.  Sweet and loving, but also headstrong, stubborn, smart as hell, willful, and pretty much any other word that fills in for "stubborn."  She reminds me of someone very familiar, but at the moment this person's name eludes me. At any rate, you all better take note because one day she will rule the world.  Not like the president, but more in a diva pop star kind of way.  Which is really better, because once a large corporation asks her to endorse one of their products, she'll have more power than the president anyway.  She will just need direction to ensure that she uses her powers for good and not evil.  At this point, I'm thinking it could go either way.  Stay tuned.

She needs to be played by Whitney Houston.  NOT pre-Bobby Brown Whitney...but right after they started dating.  When Whitney was at her most diva-ish and talented, and had not fallen victim to the crack yet.

The last two alone are enough to have turned my sweet little house into a mountain of madness on a daily basis.  More to come...