Posted by: Jenny | August 11, 2010

Greetings from summer vacation hell

Today’s coping brought to you by yelling, cussing and crying.  I mentioned before that I was bracing myself to see if this summer was as bad as last summer.  It wasn’t until a couple of weeks ago.  I think we’re all ready for Jack to go back to school, especially Jack.  Autistic kids need a lot of scheduled structure, which summer just really isn’t conducive to.  Yes, I’m sure there are summer activities I could be schlepping him to.  I think I have the brochures for all of them on the floor of my car.  But we’ve basically spent the whole summer repairing the damage Jack’s autism does to our property and doing things to prevent future damage. 

Meanwhile, his autistic impulses and obsessions have taken over.  I could see him getting stir crazy before his birthday in mid-July.  I thought getting some new toys, which included a monster swing set, would keep him amused until fall.  They don’t.  He won’t leave the kitchen.  I don’t know why, but he’s completely taken the place over.  And he doesn’t really want to play with toys.  He wants to do things like put the vacuum cleaner on the kitchen table, dump a can of coffee on the floor and jump around in it and take all the mixing bowls out of the cupboards, them with water and put them back.  And all the dinner plates?  We just randomly lay those on the floor now.  That’s just a sample, and I know those all sound like little things.  Some of them things that show how creative and smart he is, but it’s 24/7, day after day, and it’s driving me bats.  Thank God we don’t have a gas oven because my head would be in it.

Another reason he’s getting away with all of this is because he’s still doing the head through the wall thing.  It got better for a while, but lately that’s his go to behavior at the slightest interference of whatever his plans are. 

His tunnel vision is a huge challenge.  The way I understand it, autistic savants are largely that way because it’s like their brains have tunnel vision towards whatever subject their into.  When Jack wants something he just keeps at it until he finds a way.  Obviously, a solution to his ransacking of the kitchen is locks on the cupboards.  Not so simple.  Traditional childproofing gadgets are a joke to him, so I went to padlocks with those simple yet efficient $2 latches.  He just yanked on them over and over until he bent the metal and broke them off.  I even had to replace one of the actual hinges on the door.  So, I just finished redoing all of them with an O-ring and eye-hook system I concocted.  So we’ll see.  If this doesn’t work I don’t know what I’ll do.  We also put keyed locks on every interior door beside their bedrooms and the bathroom.  So I’m like one of those apartment supers with all the keys  (Good Lord, I’m even boring myself)

He’s also jabbering incessantly. (Birthday party, dinosaur, snow princess, party time, mommy, just in case you forgot there’s anything wrong with me I’m doing this to remind you.  I bet if you think really hard you can come up with reasons this is all your fault.)

Anyway, I’ve just been trying to keep my head down and get through the summer, but I kind of snapped this morning.  I *know* this will get better because these episodes always do, and it’s just really hard to see past it when you’re in it.  I don’t know that because I believe it.  It’s just that I’ve heard myself say that before.  I also *know* that God is there and listening and not giving me way more than I can handle, but it’s just really hard to hear him over the cacophony of madness. 

I suspect a lot of this might be ADD stuff, but I’m not sure.  I won’t be surprised if we have to medicate him within the next year.  (That sentence is not an invitation for advice/judgement on the subject.

I need to remember that I’m not pissed at Jack.  I’m pissed for him.  As much as it upsets me to see him do things like ram his head into the wall, whatever is going on in his mind to make him need to do that has to be upsetting him even more.  He has to navigate a non-autistic world from inside his autistic mind 24/7, every day of his life, and despite all of his talents that come from his autism, that’s bullshit. 

The good news:

Jack had a great birthday.  My mom, my sister, and her family and my brother-in-law’s sister, Aunt Carol, who we’ve adopted against her will came and Mexican buffet (a buffet of food, not of actual Mexicans, that would be incredibly wrong).  My brother-in-law aka “The Amazing Uncle John” helped my husband put together this swing set.  My kids now have a bigger swing set than I did.  American Dream (TM), check.

We were under the impression he wouldn’t learn to read phonetically, but he’s sounding out words.  There’s also this:

The fruit of the autism epidemic shall be harvested in the blogosphere, which is good since he hates wearing pants. LOL, blogger humor.

 So that’s my summer.  I’m also exhausted because it takes me until 1 or 2 am to get to sleep.  I’m one of those people who need a lot of space.  I need a certain amount of time to myself each day, and I seem to need it more than sleep.  I know some people get concerned that my other pursuits make things even harder, but it’s actually the opposite.  Those things are the key to my sanity.

In case I don’t mention it enough, or at all, I appreciate everyone’s support from family and friends, even those “fake” online friendships.  In fact, those online friendships are what get me through the tedium of the day.  God bless Twitter, WordPress and Facebook.

One more thing: I just set up a twitter account for this blog.

He just did this because he was pissed off at me for being pissed off at him for doing something really crummy.

Jack breaks all our stuff.  Many autistic children display a range of self-injurious behaviors, Jack’s is head-banging.  Mainly when he’s angry or frustrated, he bangs his forehead against the hardest object he can find.  When he first started doing it we chalked it up to being an extreme temper tantrum.  We’ve gotten used to it now, but, yes, watching your child do something like that to themselves is quite disturbing. 

By the time Jack was diagnosed he already had a permanent lump on the top of his head.  We didn’t know he had autism yet, but we knew something was up.  The last thing I needed was whatever was wrong with his brain to cause him to hurt his brain more.  Well over a year later the lump is still there.  His doctor examines it at every appointment, but it seems to be fine.  The giant lump is a callous, and it’s actually protecting his brain.  She said softness would be a sign of a fracture.  So don’t worry too much about wrapping your coffee table in bubble wrap.  Our skulls are tougher than we give them credit for.

However, the last month he’s gotten really proficient at banging his head.  He breaks, or at least dimples, the sheet rock every time now.  EVERY F****** TIME!  And if we don’t know about it right away he picks at it and makes it bigger, kind of like a bored hobo with a scab.  This week he made matching holes on each side of the wall between his sister’s bedroom and is.  Like a window.  Oh neat!  I went down there and the little stinkers are throwing insulation around like confetti.  Insulation isn’t a toy!  And when the holes are big like that we can’t even keep him out of the area long enough to let the thing dry.  He can’t resist writing his name is wet joint compound.

This brings me to my amazing idea, courtesy of my horrific taste.  Brady Bunch panelling.  It seemed to me like that would make for a stronger wall.  Unfortunately, that stuff is kind of hard to find these days.  We wound up going with t111, it’s a type of exterior siding.  That’s right, we’re using exterior building supplies on the interior.  Jack laughs at hail.  The t111 was Jaimie’s idea, and it was a good one.  I publicly repeat, my husband was right.    So tomorrow we (truthfully, I don’t really plan on being involved) will spend the day screwing this stuff to the walls and hoping it works.

There are a lot of things that have happened to me as a result of Jack’s autism that I consider positive.  One is a new affection and mother grizzly style protectiveness for special needs children living with everything from physical handicaps to mental illness.  I first heard of childhood onset schizophrenia from a friend from the blogosphere whose son has it.  A couple of months ago I caught part of a program about it on one of the Discovery networks, specifically the story of a little girl named Jani Schofield.  My friend has been supportive of our journey and this blog, so I was happy to have a chance to learn more about it.  I was instantly in love with this great kid, who couldn’t trust her own mind.   

Yesterday, I happened to recognize the family as I was flipping past Oprah.  Let me be clear, I only watched Oprah because Jani was on it, and I definitely am not linking to anything Oprah in this post.  However, I found watching Oprah think she was going to call the shots in an interview with a 7-year-old schizophrenic, then watch Oprah realize that Oprah was wrong, possibly the most entertaining thing I’ve ever witnessed, AND SO CAN YOU!  It’s all over YouTube.

Jani wasn’t diagnosed until the age of 5, but she has shown symptoms since birth (and they’re quite apparent in Schofield family home movies).  Almost all of the challenges her parents, Michael and Susan, describe regarding caring for a child with a neurological condition ring true for our experience, yet after watching the footage I know that our experience doesn’t begin to compare. 

It’s easy to see that without schizophrenia Jani is a sweet, incredibly bright little girl, but her inevitable psychotic episodes are unpredictable and dangerous.  In the interest of their 2-year-old son’s safety, the Schofields have actually had to resort to living in 2 one bedroom apartments in the same complex.  There’s Jani’s apartment and her brother, Bodhi’s, apartment.  They do things together as a family in Bodhi’s apartment, but they keep Jani’s apartment as a safe place to go when that’s necessary.  The strain that puts on a marriage should be obvious.

Jani describes her condition quite articulately (and probably better than any doctor could).  She lives in 2 worlds, our world and the world where her imaginary friends (the good ones and the bad ones) live.  She often refers to a place called Calalini that she says borders the two worlds.  The challenge for Michael and Susan is to find things in our world that appeal to Jani enough to make her want to stay here.  Jani has attempted suicide twice.  Take a moment and imagine living with the daily fear that your 7-year-old will try to take their own life.

Also heartbreaking is that some of Jani’s imaginary friends, the “bad” ones, tell her to do bad things, and she is incapable of completely resisting them.  This leaves her often feeling like she is a “bad kid”.

While most parents rejoice at those moments when their children are quiet and absorbed in an activity, a fleeting moment of peace to remember forgotten parts of you beyond the parent, these moments are perhaps the scariest of all for the Schofields.  If they don’t keep Jani constantly engaged in this world, her hallucinations take over and a psychotic episode ensues.  This is what every waking moment of her day is like.

The Schofields both admit to being on anti-depressants (duh), and Michael bravely admits to one suicidal gesture.  When I think about how dark my own thoughts have gotten on Jack’s bad days, then remember that our bad days aren’t even comparable to the Schofield’s everyday, I’d be stunned if they weren’t depressed.

I realize I’ve painted a pretty grim picture of their situation.  I encourage you to visit their site to get a better picture of the challenges and joys of Jani’s life.

In finding links for this post I, not surprisingly, found the spectrum of stupid advice for and judgement of the Schofields.  Possession, dietary solutions, her mother didn’t bond with her.  Idiots.  The most infuriating to me were accusations of exploitation on the Schofield’s part.  Like they’re the Gosselins or something.  No.  They’re trying to raise awareness.  After a violent episode at school, they had to actually let Jani become a ward of the state to get her into UCLA just to get a diagnosis.  If you’re thinking of leaving a comment along the exploitation and unsolicited advice vein then save some time and just go to hell.  On your way, thank God because it’s only by His grace that this isn’t your family.

P.S. Peter Saarsgard totally plays the dad in the movie.

Posted by: Jenny | June 19, 2010

The week in Jack

I have every intention of updating this thing more often (my intentions are worth squat).

School’s out and I’m awaiting my freak out.  The week went pretty well.  Last summer he climbed the walls for 3 straight months (almost literally), and  I blamed it on being off his schedule.  A month into the school year he started his behavior became really aggressive and hard to manage.  That’s when we started the gluten/casein free diet, so I’m hoping that will be the difference between last summer and this summer.  We’ll see.

Oh, I’m a jerk.  He was up at around 3 am Tuesday morning.  Sleep issues are common for autistic children, luckily this is an occassional occurence for Jack instead of a nightly one.  When the time rolled around to get dressed and run errands he just kept saying he was tired over and over.  Yeah, no kidding.  I’m tired too, kid, since I have to get up when you do.  I took this picture of him because on his worst day he’s still better looking than you. 

I dragged him on errands sans sympathy, when we got home I finally went downstairs (their rooms are in the basement) and discovered he had thrown up.  He was up at 3 am because he was sick, but he couldn’t tell us he was sick. 

I wonder how many times in his life he’s been punished for what seemed like bad behavior that really had a reason he couldn’t communicate.  For example, we think he never had an ear infection until about a year ago, but who knows?

He had an appointment with his neuroblablabla pediatrician yesterday.  He currently sees her every 3 months.  He seems to be getting a lot better with just dealing with doctor’s offices in general.  He used to be in full meltdown by the time we got to the “may we see your insurance card” part.  By the way, giving mothers that are doing everything they can to keep their children under control in those situations is a crummy thing to do.  It might be easier to just stand up and say, “Hi, I’m Ashley the self-absorbed, self- righteous jerk and if anyone in this room needs a time out it’s me”.  Oh, you don’t appreciate unsolicited advice?  Neither do I, shut up and read your magazine.  And stop trying to look smart by reading Newsweek.  Newsweek stinks.

The pediatrician seemed pleased with his progress.  He’s gotten so good at banging his head against the wall that he leaves a hole in the wall every time, but the perma-lump on his forehead is actually getting smaller.  He touched her inappropriately once, but I blame that more on “boy” than autism.  She gave us a list of summer camps, but none of them were called Camp Nickelodeon.

2 things:

Did you know Curt and Shonda Schilling have a child with Asperger’s?  I didn’t, but Shonda just wrote a book about it called “The Best Kind of Different”.  Great title.  You can read a short interview with them at The Daily Caller.

A friend recommended the new NBC show, Parenthood, to me because there’s an Asperger’s storyline.  I caught up with the first 4 episdoes on Hulu this weekend, and it’s as if there was a fly on the wall while we were dealing with the diagnosis and someone taught it how to type. 

At the risk of being corny, I thought one of the lines by the doctor that gives the diagnosis was brilliant.

“Meet Max where he is, and when he’s ready, walk him into the world.”

Posted by: Jenny | February 15, 2010

WHAT I’M READING: THERE’S A BOY IN HERE

When I started this I thought I’d be telling Jack’s story in some kind of sensible order.  That kind of thinking led to only 2 posts over several months.  For now, I’m posting whatever is on my mind.  At some point I’ll arrange things in some kind of order, bear with me.

What I’m reading: There’s a boy in here by Judy and Sean Barron

At this point I’m not too interested in reading what any doctor has to say about autism.  I’m barely even interested in other mothers’ perspectives.  What I am interested in is what fully functioning autistic adults have to say.  It’s really the closest thing to getting inside Jack’s head.  The more I learn about how autistics think, the easier it is for me to know how to deal with Jack.  But there’s another reason.  HOPE.  If Jack never moves beyond where he is today we’ll handle it, but he (as well as his peers) is clearly so bright I think that would be a shame.  So I like to hear of autistic adults making contributions to society, often contributions only an autistic mind could make.

Anyway, this book is written by a mother and her autistic son, a very successful adult who considers himself “recovered” from autism.  The mother, Judy Barron, writes a chapter, then Sean Barron writes an explanation of whatever situation she’s referring to.

I’m post-it flagging the thing left and right, and I’ll do a “book report” when I’m finished.  I found this book because when Jack was diagnosed my kick-ass sister schlepped to the library and checked this book out to learn more about autism I guess.  What I’ve learned over the last year is that I’m very lucky to have such a supportive family.  Not everyone does.  The rest of the family read the book a year ago.  I always intended to but never got around to ordering it.  Then my kick-ass brother in law who happens to have been married to my kick ass sister since I was 6 months old just finally bought me the thing. 

Anywho, I highly recommend this book to anyone that loves an autistic person the same way I still highly recommend A Million Little Pieces to anyone who loves an addict.  READ IT.

Posted by: Jenny | February 5, 2010

YOU DON’T KNOW JACK

I find one of the most obnoxious, frustrating parts of parenting a child with autism is vaccine-gate. I hate the whole topic. I don’t know where I stand on it. Know why? I don’t have time to read freaking medical studies. I’m too busy spending twice as much at the grocery store on his special diet (it’s working medical community) and patching the holes he puts in our walls with his head.

A year or so ago some family won a huge judgement validating that their daughter’s autism was partly caused by vaccinations, but within the last week some major paper linking vaccines to autism had to be retracted. I’d find the links to both stories, but I really don’t even care enough.

I care about one thing. I care about kids with autism, especially mine, growing up to live productive, happy, independent lives. I care about the general public understanding autism enough to celebrate the strengths and unique talents of autistic people and help them with their weaknesses.

I’m not even sure I want a cure. While I don’t believe my son was born with autism, I also don’t know who he would be without it. We’re grateful that many of his symptoms are things we consider talents. That’s why it took so long to diagnose him. He has talents in math and art that he simply wouldn’t have without autism. I’ve said (and taken heat for) before that if there was a magic pill that would reverse his autism I’m not sure I would give it to him. I believe in God. I believe God makes each human being a certain way for a certain purpose. I wonder if 20 years from now the world will face some challenge that only the mysterious minds of autistic people will be able to solve. Or maybe not.  I don’t know and neither do you.

It seems like with every major medical issue with awareness, comes commerce. I believe the most vocal voices on both sides of treating autism are personally and professionally invested in “being right”.

Jenny McCarthy and her son Evan have become the faces of autism in America.  I don’t necessarily agree with her, but I do think she is really misunderstood.  The type of autism Evan has resulted in seizures.  That was what led to his diagnosis.  Imagine standing by helpless as your toddler experiences that.  Evan had one seizure that put him into a coma.  He almost died.  That gets her a lot of slack with me.  This goes way beyond lining up toys and not making eye contact. 

I also think there’s a big misconception that Generation Rescue (Jenny McCarthy’s group) and those on the side that believe vaccines, specifically the preservatives in them, contribute to autism advocate stopping vaccinations altogether.  I’ve never heard any serious person suggest that.  What I have heard them say is that there should be a safer vaccine schedule and we should look at the various preservatives used in them.  It’s not as simple as just mercury.

Then there’s the medical community.  It goes pretty much like this:  “I’m sorry ma’m, your son has autism.  Just like that kid and that kid and that kid.  We have no clue what causes it, but we know it sure as hell wasn’t anything WE did.  Also, Jenny McCarthy is the devil.  See ya’ in 6 months!”  You’ll have to forgive me if I have trust issues with the medical community.  Now my kid might also have ADD, and I get to go through all this again over Ritalin.  That’s why mommy drinks.

Now the dialogue is constipated.  I’m afraid McCarthy’s hostile approach towards the medical community has only made things worse.  Is a cage match between a retired Playmate and representatives of the AMA and CDC on Larry King really helpful?  It seems like emotions and pride got the best of everyone, they went to their corners and productive discussion ceased.  

Meanwhile, parents, educators and hands on physicians have to figure out how to help these families just get through the day, literally.  I think the last stat I heard was 1 in 86 boys in America will have autism.  I find it difficult to believe the numbers skyrocket that much from a genetic cause or loosening of the definition of what autism is.  There is something in our environment that is, at the very least, contributing to the epidemic.  While Generation Rescue, Autism Speaks, the CDC, the American Academy of Pediatrics, the AMA, the local Elks lodge and Dr. Greg Gutfeld point fingers, thousands of families like mine are just trying to get through the day, heartbroken and confused.  On behalf of families like mine, I kindly ask you to pull your head out of your ass, put on your big girl pants and figure out what we’re gonna do to make sure these brilliant children become contributors to society instead of drains on it.  I think the latter would be the saddest thing of all.

Posted by: Jenny | November 24, 2009

CURIOUS GEORGE GETS A DIAGNOSIS

You have to get a referral to go to Children’s Village, and the kids were do for their annual checkups anyway. We were still new to the area, so we just picked a pediatrician out of the phone book. Just having specialists in the area was a new luxury. This bozo was like House without the charm. By the time we went through the waiting room nightmare and the doctor finally came in Jack was curled up under a chair banging his head against his wall. The doctor just blurted out, “He’s got autism spectrum disorder. I’ll give you a referral.” What the hell? What if I wasn’t expecting that? Then he started in on his speech about transfats. And it wasn’t a conversation. It was a speech. Nutrition was clearly “his thing” and this speech was part of his protocol. If you’ve got a fat kid let me know, and I’ll give you his name. Jack has never been remotely overweight. Meanwhile my kid is banging his head against the wall. Hey genius, transfats are the least of my problems. That doctor was ivy league educated.

Children’s Village is a facility in Yakima, Washington that treats all kinds of children’s medical needs. We spent a year discerning God’s will regarding whether we should relocate here. Before Jack was diagnosed, I always knew this was where God wanted us, but I didn’t know why. I thought it was because urban social problems are the ones I tend to have a heart for. Prostitution, addiction, homelessness. I think anyone who doesn’t see how a few bad decisions or circumstances could sent them down those roads is a fool. I’ve been redeemed personally, and I would love to help someone else enjoy the blessings I have.

After Jack was diagnosed I could see helping the homeless wasn’t why God brought us here. Apparently, people travel from around the state, even relocate themselves, so their children can go to Children’s Village. Our daughter, Charlotte, loves going to Jack’s appointments with him because she thinks Children’s Village is a castle. It’s decorated with kids in mind, not clinical at all. I used to think that kind of thing was a waste of money, but now I see the value in it. They have drop in childcare for siblings during appointments, and while Jack was in weekly speech therapy that was the highlight of her week. The place is like one stop shopping for special needs kids. Jack’s neuro-something pediatrician is there along with his speech therapist. They even have a dentist. Support groups and special programs for a plethora of conditions are based there. It’s really amazing. My throat routinely tightens just driving by the place (tell anyone I said that and I’ll deny it). There aren’t enough words to express how much this facility means to us. Just the fact that I don’t get the stink eye when Jack “behaviors out” in the waiting room is a relief.

The day (about a year ago this week) he was diagnosed the doctor let me go on and on about how it couldn’t be autism. I wasn’t in denial. I knew there was something seriously wrong, but to this day when I read a list of warning signs in a magazine or on WebMD I laugh because they still don’t ring true. If I’ve learned anything about autism in the last year it’s that if you’ve seen one child with autism you’ve seen one child with autism. And our prior family doctor swore to us it wasn’t autism. Even the week before this appointment I picked up a copy of some magazine with Jenny McCarthy and her son, Evan, on it. I wanted to be impartial, not in denial. I finished reading her story… again. Evan’s symptoms didn’t remotely resemble Jack. I thought, “I wish it was autism, then I would know what to do.” Since it couldn’t be autism, then it must have been some new freak condition or my own incompetence.

After about 30 minutes she really sweetly said, “I think it is autism.” I thought I played it cool, but at his follow up about a month later she asked me how I was doing because I seemed to be “blown away by the diagnosis”. Looking back I felt two things, stupid and guilty. Stupid for not seeing it and guilty for letting it go this long. I took him to Toys R Us and bought him a Curious George book and little stuffed George that he still carries around. He still loves Curious George, and I’ve found the best way to describe him to people is to say, “he’s Curious George”. From the primal speech to the way he climbs the walls and innocently gets himself in trouble, it’s the perfect description.

It turns out that many of Jack’s symptoms were things I considered talents. He can draw and had a natural gravitation toward numbers and letters. I’ve heard him counting in his sleep in more than one occassion. I felt reassured when he was counting and reciting the alphabet before he ever called me momma. Apparently, that all has to do with the fact that many autistic people are ultra visual. He actually builds numbers and letters (in addition normal things like trucks) out of legos and then plays with them for hours on end. Until recently, he turned his nose up at coloring books. He preferred a blank notebook. If you gave him a coloring page he would turn it over and draw a new picture on the back. He must have wondered why we kept giving him notebooks that were already done. Shortly before he was diagnosed I gave him an empty notebook and timed him. He drew for 45 minutes. He was 5 years old. A lot of things suck about having an autistic child, but having a 50 cent notebook provide nearly an hour’s entertainment isn’t one of them.

The doctor’s only recommendations for treatment back then were weekly speech therapy and to get him into our public school system. And that is how I found out that angels are real.

Posted by: Jenny | November 19, 2009

I GUESS I’LL START AT THE BEGINNING

I delivered a bouncing baby boy on July 16, 2003.  First child.  No clue what I was doing, what to expect.  Jack was a really easy baby.  By easy I mean good-natured, not off in his own world or anything.  He interacted.  I remember realizing part of why the first couple weeks with a new baby are so draining is because all the energy is one way, but after about two weeks they start giving back.  It’s with eye contact mainly, but any mother will tell you that simple, first communication between parent and child is life changing.  My point is that I do not believe my child was born with autism.  A genetic predisposition?  Probably, but he was a “normal” baby for a long time.

Everything went like clockwork until Jack should have been starting to speak.  Since he was my first child I didn’t really notice.  We lived in a very rural community then and didn’t have access to fancy, big city specialists.  Our family doctor eventually, hesitantly, referred us to the one speech therapist in the region.  She was British, and I think her name was Shirley.  She diagnosed Jack with a speech delay.  We started weekly speech therapy.  That didn’t last long.  I was pregnant with my daughter, and my husband worked insane hours.  I couldn’t see how I was going to manage schlepping a newborn to speech therapy I wasn’t even sure he needed when I already needed all my arms and energy to manage Jack.

And then there was her method.  She said he needed to learn to sit still before she could teach him (he wasn’t even 2 years old).  She basically made us pin him down.  It didn’t seem right at the time, and now when I think about it I’m furious.  Idiot.  That doesn’t even make sense to do with a “normal” 2-year-old.  Some of Jack’s peers were also seeing her.  Ironically, she was diagnosing half of them with autism.  The one child I’ve kept up with simply had an ear infection problem.  He couldn’t hear.  He got tubes (whatever those are) in his ears and caught up in no time.

On Mother’s Day I gave him a cup of juice and he said, “Dae-doo (thank you).”  It came late, but his first word was thank you.  He started picking up more words, and Shirley cancelled every other appointment anyway, so with our family doctor’s blessing, we cancelled speech therapy.  I firmly stand by my opinion that that chick was bats.    

Jack turned 2 in July.  Charlotte was born on September 8, my dad’s 78th birthday.  You gotta remember, I’m not a “baby person”.  Some girls earn money in high school babysitting.  I worked at a home for the mentally challenged, where I had dishes thrown at me multiple times.  To this day, if I don’t share dna with you or you’re a friend in a jam, don’t ask me to babysit.  What was my point?  Oh.  There were probably signs I didn’t see because I didn’t have a frame of reference.

Other than the speech delay he didn’t have any other problems for a long time, and to this day he’s never lost development.  It’s always been just really slow progress in a few areas (while lapping kids his age in other areas).

Anyhoops, shortly after Charlotte’s first birthday we decided to try to relocate to a city closer to our hometown.  That was a year long process (my husband works for the federal government), and we moved here about a month before Charlotte’s 2nd birthday.  (So Jack had just turned 4)  We can now make day trips to grandma’s house.

During the year we were trying to relocate my dad’s prostate cancer came back.  This time we knew it was terminal from day one.  I believe it was January.  From then until his death I didn’t give a rat’s ass where Jack fell on the milestone chart.  My dad was 49 when I was born.  I’d always known our time would be limited.  After his diagnosis all I could hear was this ticking clock in my head, but to be with him the stars would have to align just right.  Between distance and having 2 small children I either couldn’t be there or my being there just wasn’t helpful.  Where I went, my kids had to go too.  While I was in it I didn’t feel like I was going through anything horrible, but when I think back now… it was horrible.

Where was I?  In August ’07, less than a month after we moved my husband’s father passed away (my dad was still alive, but ill then).  At the end of January we had a house fire, and dad was liberated from his body on February 1.  During this time, Jack started showing symptoms beyond his speech.

A lot of tantrums, and transitioning between activities was a nightmare. Again, this was my first child.  I chalked it up to my own incompetence. When part of his tantrums included banging his head against the wall we knew it was definitely something serious. In August we got a referral to Children’s Village… and everything changed.

Posted by: Jenny | October 7, 2009

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