Posted by: Jenny | August 29, 2011

Accept this

Jack and his sister just got in a fight.  She didn’t react well when she tried to apologize to him, so he head-butted her and got in big trouble.

We’ve been having Jack draw on a magnadoodle when he’s upset.  This time he drew a picture of himself and wrote the word “bad” next to it.

That’s why I don’t accept Autism or look at it as some kind of gift or the next level of evolution (seriously, fuck off).

This is bullshit, and it didn’t have to be this way.

I almost forgot about my column because I’m engrossed in getting Lord of the Flies enrolled and evaluated at his new school.  I started trying to communicate with the school district last spring, before we moved.  They told me we’d take care of it in the fall.  I contacted them in early August when we arrived in town.  They told me registration started August 15.  School starts on Monday.  My husband finally went down there today.  They just got his records from his old school today, so the evaluation process can start, but he’ll likely miss the first week of school.

People have told me, “They’re required to bla, bla, bla!”  That’s not the point.  It’s not about forms; it’s about the people that will actually be charged with educating him need to meet him, talk to us and have time to properly prepare for him to enter school.  Anything else isn’t fair to my son, his teachers or his classmates.

They’ll also likely have to hire a one-on-one for him.  That’s one reason conservatives need take an interest in finding the environmental factor and preventing autism.  1 in 77 little boys requiring (and they do require, this isn’t government waste) their own private tutor is going to get expensive.  If 1 in 77 little boys were paraplegics we wouldn’t expect their parents to build a ramp every time they needed to enter a public building.

Anyway, I’m sure when we get through this red tape it will be fine.  I just think this part could go a lot more smoothly.

By the way, none of this would be any different in a private school.

Update: There’s an increasingly popular theory that a lot of this has to do with my PMS.

IN OTHER NEWS:

*tasteless joke about Lindsey Lohan hitting the snooze button*

Amy Winehouse had no illegal drugs in her system when she died, although there was alcohol.  I’m not gonna say the world owes her parents an apology.  Even her mother assumed her death was an overdose and stated that it was inevitable.  But I am sorry.

There are different way to look at it, but to me this makes her death even sadder.  Her public image was that of a chronic addict completely uninterested in treatment.  We didn’t think any other outcome was remotely possible.  If she died making any attempt at recovery then we have to wonder what her future could have been.  I know that’s how I feel about someone from my own life that died in the early stages of recovery.

If achieving recovery is a possibility for addicts, then anything is.  It sounds absurd, but people who knew Winehouse have claimed she wanted a family.  The addict, Amy Winehouse, would have been a horrible mother, but that’s not necessarily true for her as a whole person.

That’s why addiction is so heartbreaking.  While active, it devours any good traits a person has.  I don’t know that I want to call it possession in the religious sense, but if it’s not a literal, spiritual bondage then I don’t know what is.

Winehouse lived 20 non-addict years before most of us knew who she was.  Hopefully this news can bring a measure of comfort to her family and friends and lighten the cloud that will always hover over her memory.

And now… the pedophile lobby

No, really.  Smart people with an undiagnosed psychiatric condition of their own are asking society to start referring to child molesters as minor-attracted people.  There’s more.  They also want pedophiles to play a role in how their diabolical illness is defined in the DSM.

Discuss.

crossposted at Jennifer Dailing Waite and The Conservatory

Posted by: Jenny | August 11, 2011

Update: from my mom’s house

On Saturday we’ll have been at my mom’s 2 weeks.  It’s gone better than I thought it would.  Jack may be the only 8-year-old with an advance team.  By the time we got there his room and much of mom’s house was stripped of valuables and 17 doors and windows were padlocked.  This was so all of us could relax at least a bit while we’re here.

I love having sidewalks and being able to get pretty much anywhere within 10 minutes.  Mom’s backyard is fenced in and pretty private which is nice.  We had a problem about a week ago.  I sent the kids out there and intended to follow them shortly.  They weren’t out there a minute when we heard the neighbors dogs barking.  BARKING… like if there was an intruder.  The intruder was Jack.  He’d kicked a slat on their fence through and was on the other side.  The teenage son came out and went along their whole fence re-nailing loose boreds.  They we’re really nice about it, but it’s embarrassing.  And scary.  It may have been for the best though.  Jack’s scared to death of those dogs now (they’re harmless).  This morning when he heard them let the dogs out to do their business Jack ran inside.  It’s not that I want him to be scared, but this particular fear is keeping him out of other trouble.

The rest of the month I’ll be focused on getting both kids ready for school.

Our house in Selah still hasn’t sold.  There’s an open house this weekend, hopefully that’ll do the trick.

 

 

Posted by: Jenny | August 11, 2011

my new gig

My friend, Dan Collins, and some of his friends have started a new site called The Conservatory.  It’s a Conservative news and marketplace site, but I’m still avoiding politics at all costs.  He gave me a column anyway.  On Wednesdays the topic will be special needs and mental illness, usually in the form of a news round-up.  Dan’s son has childhood onset schizophrenia, so stories about that and autism will be given a lot of focus.

The rest of the week I’ll be writing about whatever other nonsense interests me.

Posted by: Jenny | July 26, 2011

Slowly but surely… another update

Well, we’re down to about our last 4 days in this house.  It still hasn’t sold, but we’re moving in with my mom until it does.  I’m hoping it well help Jack to have a chance to adjust to the change of city before school starts.

I was worried about how he’d do this summer with school out and our house up for sale.  I don’t screw around when I’m moving.  Our “stuff” is already moved except for the bare necessities… including a lot of the kids toys.  There’s no way I’d be able to keep the house ready to show with all that stuff here.

Jack’s had a really hard time the last couple weeks.  Lots of head-banging.  This morning I just needed to go to the bank, which here requires getting on the highway.  We were having a rare rainstorm (which I love).  It was coming down so hard I could barely see, then I’m surrounded by three semi-trucks which were throwing a constant wave of water over my windshield.  I know that kind of thing doesn’t phase some people, but I prefer being able to see at least a little when I’m driving a lethal weapon at 60 mph.  To top it all off Jack goes into a grand mal meltdown in the back seat.  God and I are going through a bit of a rough patch (it’s not Him, it’s me).  I inquired as to why I can’t just go to the ******* bank.  Anyway, I just need to hang on a few more days.

We’re moving to be closer to my family, and here are some examples why.  My 79-year-old mother is moving to her basement and pretty much giving us the upstairs.  However, I do intend to go down there to hit “publish” on anything I write from there.  I welcome the blogger street cred that comes with blogging from your mom’s basement.  My brother-in-law has also been working all week to “Jack-proof” the house as much as possible, so we don’t have to be on high alert the whole time.  That’s right; Jack requires an advance team.  To give you an idea of just what it’s like to live with an autistic child, 17 padlocks are required.

We think we found a great house that we hope is still available when we’re ready.  It’s a ridiculously huge brick rambler built in 1956.  The current owner, Hazel, just went to assisted living (yes, I also wish she came with the house).  It seems to be in great shape and hasn’t been updated.  You know those “Brady Bunch” houses they mock on House Hunters?  That’s what we like.  The decor in the room that would be my office seems to have been inspired by Hunter Thompson’s poker visor.  No one would love this place as much as we would.  We’ll see.

Hopefully, by 9/1 we’ll have an offer on the house.  In the meantime, I need to spend the rest of the summer teaching our daughter to write before kindergarten.  That’s why we need to be near our support system.  I didn’t realize until she started preschool last year that she didn’t even know how to hold a pencil.  She had a ton of behavior issues too.  Here we can take care of Jack, but that’s it.  We need to be where we can properly care for all the responsibilities God has given us.

Posted by: Jenny | June 19, 2011

Update

I spent the winter getting the house ready to list.  Pretty much every surface in the house needed attention.   Jaimie’s brother, Danny, came over and was a huge help to us since we’re idiots. We’re still fighting the holes in the walls from Jack’s headbanging, but it is getting better.  The house is on the market, and we’ve put in an offer on a house that would work really well for us in Wenatchee.  We just have to get an offer on this place by 7/15… uh huh.

The last couple months of school were really hard for Jack.  I thought he was handling the changes pretty well at home, but it turned out the more he lost control of things at home the more he was acting out at school.  Anyway, we all got through it.  This was his first week of summer vacation, and he handled it pretty okay.  We have a backup plan of at least the kids and I going to stay at my mom’s house by August 1st, so that’s a comfort.  I hope we don’t have to do that because it’s hard on my mom, but it would actually make the transition easier for Jack since that’s a familiar place.

We’ve been dealing with Jack bolting, jumping out the windows.  It’s become a pretty serious issue.  We’ve had to screw and padlock all the doors and windows shut.  He then learned how to work a screw or improvise one with whatever he could find around to remove the bars in the windows.  Then Mr. Waite started using those screws you need an allen wrench to remove, so today Jack actually pryed a whole track out of one of the windows.  He’s even climbed out of one of those tiny basement windows.  One night I came home and Jack was missing… I mean gone.  We had to call 9-1-1 which has never happened before.  Long story short, he was in his room, kind of between the wall and the boxspring sound asleep.  I’ll write more about that later, but we found a watch with the gps in it.  If it works the way it’s supposed to we’d be able to find him ourselves with our phone or pc and it doesn’t look like he can take it off.  We’ll see.

There are some things I’d like to do with the blog.  I’ll be adding some new headings for practical issues like diet and safety, things that have worked for us and things that haven’t.

But right now I’m just focused on getting us moved with as little drama as possible.

Posted by: Jenny | January 7, 2011

Some things do take a village

Thursday morning we awoke to a another news story about the fraud of the infamous Wakefield study, which was used as a basis for many claims of a link between vaccines and autism.  It seems like this study was debunked a year ago, but the story keeps getting recycled.  I don’t know or care to find out why.  I find the vaccine debate in the autism community utterly depressing and infuriating.  I’ve already spent far too many days depressed and infuriated over autism, no more.  But for the record, here is where I stand on it:  I dunno.  Wakefield seems like a crook, but one crook doesn’t convince me that all the parents that have taken “normal” children in for vaccines, and within a day “saw the lights go out” or saw their child start to have seizures or other severe, undeniable, unexplained physical symptoms are crazy or lying or stupid.  (By the way, these seizures that some autistics experience can, indeed, be fatal).  I find it personally offensive when the experts whose livelihood is built around “helping” them blatantly mock them.  But other than giving the experts the electronic finger, that isn’t my battlefront.

I am concerned with stopping, or at least understanding, the epidemic of autism we face today.  To do that we need to find the cause or causes.  Unfortunately, I’m not too hopeful.  Everyone charged with finding a cause or explanation, even the best intentioned people on both sides of vaccine-gate, have a personal agenda related to their egos and/or pocketbooks that comes long before helping families like mine.  I understand that, but I can’t accept it.  I’ve already accepted plenty.

We talk in circles.  Tiny, needle puncture sized circles.  As I write this, the homepage at Autism Speaks states that 1 in 110 children are affected by autism (meaning they fall somewhere on the spectrum), for boys the statistics are 1 in 70.  This is where all Americans, particularly libertarians and republicans come in.  I’m afraid the right’s principles of personal responsibility leave conservatives thinking issues like this aren’t their problem.  Most of them sincerely care, but at the end of the day don’t realize how they are affected.  Right now, they’re not.

But they will be, and if the numbers don’t slow down it could be a huge problem.  Right now, that 1 little boy out of 70 is an angelic faced child you see in the grocery store acting weird once in awhile.  But most of the time he is isolated at home with his parents that are doing their best to understand(and finance) the unknown.  Even if the numbers stopped growing, in fifteen years we are going to have 1 out of every 70 18-year-old men becoming adults with autism.  Just think about how that will affect our military alone.  I joke that my brilliant, yet socially disabled son will someday build a bomb that’ll save the world, but he’ll never be fit for combat.  I don’t even know if he’ll be able to live on his own or be able to hold down a traditional  job.  Even right now, my son has to have someone dedicated to walking him through each step of his school day.  On the taxpayer dime.  No tax break will every make that something my husband and I could pay for out of pocket.  That’s but one way this is everyone’s problem.

I’ve heard other conservatives dismiss the epidemic as an over-diagnosis.  Like these children are just a little odd.  No big deal.  In that case, we’ve changed the definition of odd to mean jumping out of windows, banging heads against the wall to the point where the sheetrock breaks out of frustration that they can’t communicate and chronic diarrhea if they don’t adhere to a special diet.  That’s just at my house.  If you think autism isn’t real or is an over-diagnosis you’re the village idiot.  Get lost.

We need to take the conversation about autism beyond a yelling match about vaccines, to what the epidemic really means for the day to day lives of the children suffering from it today and how society as a whole may suffer from it later.  This will require meaningful awareness (not rubber bracelets) and money, public and private  To start, Holly Robinson Peete has 8 autism-related issues the media overlooks.  Yes, it’s at HuffPo.  I’d rather link a right-leaning site here, but as far as I know none of them cover this stuff.

My point?  If you have a heart you’ll want to help for my son’s sake.  If you have a brain you’ll want to help for your own.

(BTW, I highly recommend  Peete’s children’s book, My Brother Charlie, for siblings of autistic children.  I could write another 1000 words on how this has affected my daughter, and will her entire life.)

Note: Fellow conservative and autism advocate,  Tim Welsh,  makes a case for Dr. Wakefield.

My reaction to the Dr. Wakefield story… well, it is mainly why? And what is new? The why is we have an impotent mainstream medical community that does not have the tools to deal with questions about autism and vaccine injury. They continue to push a one size fits all program in a society that knows, expects and demands informed consent. We have had too many mine accidents, recalls, food poisonings, oil spills, and no explanation for autism to continue a program of trust me I wear a white coat. As a conservative Christian business owner, I say it is time for the pharmaceutical company to be responsible for the expenses occurred by reckless use of mercury and hiding in thud skirts of government.
What is new? Nothing, this is a smoke screen. A story that was overplayed by media in 1998. Dr Wakefield simply asked the question. The medical community has yet to answer. What are the causes and solutions for autism?
“TannersDad”  Tim Welsh
autism and vaccine safety advocate
Director Mason Allen Medlam Foundation for Autism Safety

Over the last 2 years I’ve grown to see Welsh as a sensible and knowledgeable source on autism.  If you’re getting all your autism information from Dr. Greg Gutfeld (and a lot of you are), then at least get the other side from someone for whom the issue is more than a punchline.

crossposted at Pundit League

UPDATE: Melissa Clouthier (aka MelissaTweets) has weighed in. I wanted to ask her what she thought about this when it broke, but I knew she was on the road.  She’s much more knowledgeable about the science and explains it so much better than I did, and agrees that the persecution of parents has to stop.

Posted by: Jenny | January 7, 2011

Another update

So over the holidays we found out that a job trade had been approved for my husband.  We will be moving home at the end of the school year.  Thank you to everyone who prayed about this.  The day the paperwork was due I sent out a prayer request to everyone I could think of.  At that time we were hoping for a compassionate transfer, a real long shot for good reason.  Your living situation isn’t your employer’s problem.  Later that day one of my husband’s supervisors came up with a job trade with the person doing my husband’s job at our hometown office.  There were reasons moving here would be better for him too.  We knew we had a lot better chance at that, so we were cautiously optimistic.  We still thought it would be a long time before we knew for sure, but we got the news that it had been approved before Christmas.  A few of my husband’s supervisors went out of their way to help us with this, and we’re very grateful to them.

So I’ll be spending between now and spring getting this house ready to sell.  We were in a hurry when we came here and bought a really stupid house.  We had an electrical fire, I won’t be surprised if there’s mold and the floor plan stinks.  So I’m redecorating for the HGTV crowd, then we’ll have our own home inspection done so there won’t be any surprises.

Jack’s on the full dose of his medication now.  I could see a big difference between Christmas break and how he was on summer vacation. He seems to be having a breakthrough with his speech too.  My biggest worry about the medication was that it would hurt his speech, so I have no idea if this is from the medication or something else.  He already said lots of words (and things that aren’t words), but nothing really relevant.  He talks, but he doesn’t really communicate.  Until now when he made a complete sentence, it was a memorized phrase from tv or a book.  A couple of months ago he started saying, “It’s not clean until it’s oxy-clean.”

Well, one day we got in a fight, and he hit me.  I don’t like that.  He got sent downstairs, and I could hear him having a pretty violent tantrum (lots of head banging).  I was about to go down there when he came upstairs, put his hand on my shoulder, looked me in the eye and said clear as a bell, “I’m sorry for hitting you, mommy.”  Which was sweet, then he backed up, pointed at me and said, “No, angry.  BAD!!!”  He was scolding me for being angry.  Anyway, that was a huge moment for us.  He’s also been saying more useful single words, like telling me what he wants to eat instead of tearing the kitchen apart looking for it.

Posted by: Jenny | December 2, 2010

An update

Jack’s been on the medication about a week.  I noticed a difference right away.  He’s mellowed out just enough to be able to focus, but he doesn’t seem stoned or anything like that.  He’s also less irritable.  He’s still only on half a dose, he’ll start taking the same amount twice a day next week.

We’re grateful to have gotten letters from Jack’s teacher and doctor to include with our transfer request.  Just the fact that they both think this will be a good idea helps.  Our packet is due December 9.  It’s still a long shot.  It will basically be up to this one guy that’s new in his position.  Not only does he not know us, but he doesn’t even know my husband as far as being an employee goes.  Prayers are appreciated.

If this avenue doesn’t pan out we’ll start looking at jobs outside his current employer.  In the meantime, I’m getting our house ready to sell for a move I’m not even sure we’re going to make, but I have to do something.

Posted by: Jenny | November 21, 2010

I want my mommy

Hey guys.  Since we last talked the universe took pity on me, and summer eventually ended.  Jack’s transition back could have been better and could have been worse.  Transitions are one of his challenging areas, whether it’s from coloring to dinner or an unstructured summer vacation back to school again.  School breaks are as hard on Jack as they are fun for other kids, but we made it.

His 5-year-old little sister also started preschool this fall.  She’s not doing so hot.  Long story short, Jack’s situation has effected her far more than we thought it had.  What’s disturbing on top of the typical “acting out for attention” behaviors are some habits she’s picked up that we didn’t notice.  When something doesn’t go her way, even something really small like dropping a crayon, she cries instead of saying what her problem is.  She’s basically copying the meltdowns Jack has.  Then a couple of weeks ago her teacher asked me if she has a hard time with noise.  They were practicing for their Christmas program, and they had to put Charlotte in the back row because it was too loud for her.  Her teacher basically described what she does when her brother (and thus her father and I) are having a throw down.

It seems to me half of her problem is bad habits she’s picked up, but we’ve definitely dropped the ball on discipline as well.  I think I know why.  I’m either exhausted and let her get away with anything, or I feel guilty and let her get away with anything.  I didn’t realize it, but that’s what I do.  So now I’m forcing myself to discipline her while in the back of my head holding myself responsible for the behaviors.

I’m sure it’s also hard for her to understand why Jack gets away with things that she doesn’t.  As concerned as I am for Jack’s future, I’m also concerned that she will grow up to resent her brother, and with good reason.  I keep reminding myself that Eunice Kennedy Shriver’s work with the Special Olympics was inspired by love for her own special needs sibling.

As far as Jack, we’ve made a decision to start giving him medication.  I’m not going to say which one because I don’t need lectures in the comments about it.  Trust that we’ve researched this drug and are confident it’s at least not dangerous for him.  He’s gotten to the point where he can’t focus enough at school to be taught, and at home he’s very destructive and not happy at all.  He’s also having sleep problems.  In the past if he had a rough night I’d expect him to fall asleep sometime during the day.  That’s not happening anymore.  He’s simply sleeping less.  A lot less.  It’s one thing when his autism is inconvenient for us, but it’s causing him distress now.  That’s unacceptable.  So I’m picking up his Rx on Monday afternoon and we’ll see what happens.  We’re sad that we have to take this step, but we feel it’s the right decision.

The other night my husband mentioned applying for some other jobs within his field.  He mentioned accepting one in our hometown.  I wanted to shoot him.  We’re just finally settled where we are, but the next day I started thinking about how nice it would be to be near family and friends again.  Raising a child with autism (and I assume any special need) can be very isolating, especially for someone like me that tends to keep to herself anyway.  New situations are tricky, so you tend to not do anything outside the home you don’t have to.  We have tons of people who love us and would do anything to help Jack, but they can’t.  Because they aren’t here.  Over the last year I’ve felt like we’re barely surviving.  I tell myself God won’t give me more than I can handle, but He’s really pushing it.  I’ve told Him this much.  We have a very no B.S. relationship, at least from my end.  So I started thinking maybe He’s giving me an answer.

So we’re applying for a “compassionate transfer”.  It’s something we can only do one time, and the decision will be made by a government official that doesn’t know us.  We feel like we have a decent shot at getting a “yes”, and I’ve resigned myself  to accepting a “no” as just that.  BUT I REALLY THINK IT SHOULD BE A YES.  Basically, I want my mommy.  So we’d appreciate prayers that God will seek my will ;)  We should know by February 1.  The not knowing is the hardest part for me.

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