Losing One’s Sanity

Today, I read When My Crazy Father Actually Lost His Mind and with every word I heard my own story over and over again.  The mental house system in this country isn’t just broken, it is shattered.  But this story does not express the depths to which some mentally ill will go to sabotage their own care.  Nor does it express the deep costs to family.. both financially, emotionally and socially.

For the last several years, I have not socialized at all.  Granted, I’m not the most social of creatures to begin with but I couldn’t socialize.  I couldn’t count on him to watch the children so I could join the book club or meet a friend.  I couldn’t count on him to behave to have company over or to even keep his underwear off the kitchen counter.  I couldn’t have playdates for my sons because his behavior was so unacceptable at times.

Emotionally, he exhausted me.  The anxiety about what would happen next.  The whirlwind that was his decision making process.  The way he dismissed any concerns I had made me question my judgement only to later learn I was right.   Hiding things that would piss him off because I couldn’t deal with his screaming, slamming, swearing.  God forbid a dog poop in the house, that was worthy of a meltdown of nuclear proportions.  Not wanting to have him in the car because stopping for a yellow light would send him into a fit attempting to destroy his phone.   He once ripped a $20 bill into itty bitty pieces because I got a speeding ticket.   I did almost all of the night feedings because it was bad, real bad if his sleep was messed up.  Real bad.   He once ripped my car seat because I did something stupid with the car that resulted in no damage yet he stabbed his keys into my car seat and ripped it.

Of course, there were the periods of depression but those were easier to deal with.  He needed me to take care of him and I could do that.   I tried to find things he wanted  to do.  I tried to be cheerful.  I tried to make him feel better.   When he was better, he was fun, clever, and so nice to be with.   Looking back, the periods of normal behavior… where he wasn’t mean and wasn’t depressed were rare, shortlived and really weren’t the norm.   And they were always followed by periods of gregarious, hyper active spells that I eventually realized lead to the manic phases.

I’ve only learned in the last six months how much he lied to me for a decade.  Big lies.  Small lies.  Most of them unnecessary and unwarranted.    And I’m having a real hard time piecing apart how much of this is the bipolar disorder, how much of it was abusive behavior, and how much of it was him being an ass.

I don’t think I’ll ever know.

But he’s still trying to punish me.  I’m getting an insane amount of emails.  The tend to be themed.

  1. I’m poor because you took everything.
  2. You stole my kids.
  3. You’re a bitch.
  4. You abandoned me.
  5. I’m going to come after you in court and I’ll win.
  6. You better do ____ or else.

Notice the pattern.   It’s all about him or our relationship.  Even when its about the boys, its really about him (how he misses them, his rights to the boys).   He doesn’t ask what they need, what they are doing, how they are doing.  He doesn’t ask.  Ever.

My oldest son has been diagnosed with PTSD from observing his father’s behavior and is in therapy.  But he thinks he’s a great dad.  He thinks his behavior is perfectly appropriate.

 

Maybe he really has lost his mind.

one more thing – a whine

My eldest son’s PT evaluation came back.   In the three areas they evaluated stationary skills/balance, object manipulation and motor skills, he performed the way a child a full two years younger would.  To put that in prospective, you  have a group of 100 five year olds and my son’s only going to out perform the child with Cerebral Palsy.

 

Honestly, I’m not surprised and I’m not bothered by the fact that he is beyond clumsy.  I am bothered by the fact that this is one more thing we have to work on.  Instead of him learning about different dinosaurs or the complexities of baseball, he is just trying to learn how to catch a ball without making a scoop of his arms.    There is only so much time in the day and this is a kid who needs his down time.  I worry about what he’s missing out on and how that’s going to make him further behind down the road.  I worry about how he’s going to deal with the insults and the jokes at his expense  that I know are coming.

 

I keep telling myself to focus on the little steps he is making.  Relish the fact that he did two perfect goalie kicks and ignore the fact that it took him 10 minutes to be willing to touch the ball and he still doesn’t have a clue what he is supposed to do during the game unless I tell him explicit instructions.  And hey, the physical therapist was impressed how he was able to learn skills when I took their instructions, reworded them and chunked them.

 

But it means one more thing on our plate.

 

The worse part is my husband not better.  He’s had a rough two years and he has made living with him nearly unbearable.  I tried so hard to keep it from the people I worked with but I’m terrible at lying and when I was asked again and again, why can’t your husband do this, I would have to say something about how he couldn’t.  People started putting two  and two together and started telling me I should leave him.  I thought he was getting better, I knew he was still drinking a bit but thought that it was getting better.

It’s not.  It was clear last week.  He drinking enormous amounts to my mind, 4 to 5 drinks a day.   He’s having crazy thoughts and while he has somehow managed to avoid the worst that has happened when he was drunk, I don’t have any faith he will be able to continue that.

 

He’s lying to me.  A lot.

 

I’m not happy.  I have tried to help him and it hasn’t helped.  He’s not going to get better.  He’s going to keep lying to me.   He’s going to keep drinking.  He’s going to keep having crazy time.   I can’t stop him and I can’t fix him.

 

Potty Training With Special Needs

The Hairy Farmer Family’sWife wrote about her struggles with toileting training her son, Harry.  It reminded me of what a struggle we had with our oldest son.   It is so difficult sometimes to distinguish between can’t and won’t especially with such young children who aren’t able to express, “Mommy, I’m terrified of perching my skinny ass on that giant hole above water disappears in a loud scary noise!”

 

I remember when I was pregnant with my oldest child.   We toured daycare centers and  one center told us proudly that children at their center toileted on their own schedule and that they had FIVE year olds still in diapers.   I was NOT impressed.  Of course, five years later, I find that I have a different opinion.  MY children would potty train early; that was the key to successful training.

Why is it that whenever I get snotty with my opinions about how things should be or shouldn’t be I get a big fat slap in the face?

Along comes my oldest…. a child terrified of loud noises with balance and gross motor problems who is very much afraid of any position where he doesn’t feel steady.    We talk about every child developing at their own pace but we forget that there are sometimes real, physical reasons why that pace might be significantly delayed.

At 18 months, I bought him a baby potty and started putting him on it.  He peed the first time.  Oh was I proud!  He was so clever!  Yeah.   That was probably the high point of potty training in our house for a long time.

He didn’t object to sitting on the potty before his bath and he would occasionally pee in it but by two, if I got pee once a week it was a good week.   So I made the huge mistake of trying to bribe him with suckers.  Mind you at this point, I don’t know anything was wrong with him other than the fact he was very sensitive and that his ear infections had impacted his hearing and his balance.    He started refusing to use even  the baby toilet altogether.  I decided to pause for a bit.  He wasn’t ready.
That year, we tried again four or five more times.   I tried the naked baby method, the bribe method, the timer method.  I failed  or maybe I gave up.  I had a new baby, I had an open wound from my c-section for 3 months, I was getting horrible news about his development left and right.  My husband was traveling some and in school the rest.   Honestly, I thought my world was ending and was beginning to wonder if the people saying such awful things about my son could be right.   Could he really be retarded or autistic?

Finally as the new baby exhaustion began to clear and I began to see progress through his speech therapy, I began to believe in his ability and decided to give him time.  I bought some underpants, potty videos, potty books and just kept telling him that one day he would put all his pee and poop in the potty all the time.   Other than asking him to sit on the baby potty before his bath, I just let go for a bit.    But one day, about the time he turned three, he wanted to stand at the toilet to pee and he began to do that every night before his bath.

He finally asked to wear his underpants 2 days before we were to attend a wedding.  I didn’t care.  I was ecstatic.   Lots of accidents but still, he wanted to wear his underwear.  The diapers went away except for bedtime.   We took three changes of clothing with us to the wedding.     I was diligent about taking him to the toilet but disaster struck!  Automatic flush!  Hand dryers! It was so overhwelmingly loud!  He was terrified of using the toilet and refused to pee in the toilet while we were there.    We went put him in his last dry clothes we left.

We had a lot of wet clothes for the next two months but he eventually got the hang of it.  He refused to sit on the toilet but would pee standing.  Going out was an iffy project.  He refused to use most public restrooms and would have complete meltdowns if we insisted.    A museum bathroom had him hysterically on the floor screaming. It was awful.   There were only two public places I KNEW he would use the toilet, one certain handicapped bathroom in the hospital where he had speech therapy and the family restroom in the mall.    What did they have in common?   There was a single toilet and sink, they were larger than a stall.

Despite the fact that by 3.5 he was dry most of the time, he still would hold his poop until he got a diaper at bedtime.  As soon as he was in his diaper, he would poop.  Only he got his diaper then was read a book and put to bed.    We shut the door and he pooped but he didn’t tell us and we would discover in the morning he had been sitting in poop all night.   We had to adjust our bedtime routine to bathe him earlier so that we could change his diaper.

By the time we approached four, I was starting to panic about the pooping in the diaper thing; his doctor told me that I basically had one year to get him potty trained properly.  I am not sure what the or else was.  So I made him a reward chart with a picture of his potty with poop in it= some toy he wanted.     I told him when he put poo in the potty I would order that toy.   He did it that day and his toy was there two days later.  He was SO happy.  So I made another chart.  Two poops = a toy.  Then three, then four. then six.  By then, he was in a routine.  He pooped  before his bath every night in the potty.   Honestly, I was thrilled.

He still refused to sit on the regular potty.  In fact, he would become hysterical whenever I put him on it so I stopped trying.   I decided it was more important for him to be comfortable and independent using the toilet, any toilet, than using the regular one.  I taught him to empty his potty after using it and left it at that for almost a year.

His special education teacher was less than impressed when I mentioned that he refused to use the regular toilet.  Actually, I think she rolled her eyes.    I knew she was just thinking, “Make him.  Take the baby potty away.”    I don’t think she realized what a struggle it was to get him there or why it had been so hard.

At five, we moved and I threw out the baby potty when we left.  My husband panicked and I told him that our son hadn’t pooped by the time we got to our short term housing (3 days) I would buy another.  Fortunately, he’s a big boy and he had to  poop.  So he tried the big potties  the hotel.  He had grown enough in the last few months that he wasn’t having to hold himself up and could easily steady himself.    I officially declared him toilet trained.  I still have to flush for him in public but I can live with that.

What was the common theme with his toileting problems?   It wasn’t refusal (at least after 3).   It wasn’t mechanical (he developed the control).  It was fear.  He was afraid of the noise in public restrooms (still is in some though he has adjusted somewhat) and he felt unsafe perched upon a toilet seat even with modifiers.   He doesn’t have the strength to hold himself steady for long periods of time.   He was afraid.  No punishment, no bribe will overcome that kind of fear.   His fear seems stupid to someone who isn’t bothered by sudden loud noises or who never spent months in silence.    His fear seems unreasonable to someone whose sense of balance and muscle control were with normal ranges.   But that wasn’t what he had to work with.

Everything is harder for my son (except for some academic work) than it is for other kids.   Like every other skill, like every other milestone, we had to break it down into smaller chunks, we had to be patient, and we had to find a way for him do it given his current abilities.

Vindication

Today, I took my little kindergartner to the doctor.  Nothing was wrong but since we moved, it seemed prudent to have a visit with our new doctor so he is established.  Given that there is such a shortage of family practice doctors,  it is not uncommon for family practice doctors to have a wait of 6 to 12 weeks for new patients first appointments. Luckily, we have a friend of the family practicing in a neighboring town.

 

It was a marathon visit.  Two hours.  We reviewed his medical and developmental history in detail.  She clearly was unimpressed with the PDD-NOS diagnosis and wants to have him reevaluated next year.   She agreed that he is an anxious little guy.   On her own, she came to the conclusion that his sensory issues were related to his hearing loss; so many professionals (MDs, OTs, SLPs, teachers) have rolled their eyes at when I suggested this.   It’s interesting because she also focused on things that have been ignored or downplayed in the past but that I have asked about.    She saw him as I saw him.  Maybe it helped that she has seen him socially, playing with her family.  Maybe it helps that it is older and he has had so much support already.   Maybe I am getting better at clarifying his history.   I think though that  it is  simply that she is also a pediatric neurologist and has had extensive training with developmental delays.

 

After all these years of focus on his language, it was his motor skills she was most concerned about.   It has frequently been commented upon that he has low muscle tone in his hands.   He can write his name but struggles to hold a pencil; just helping him hold the pencil makes his writing so much more legible.      His gross motor skills are a major concern and he has been referred to a Physical Therapist for evaluation of his balance, his gait and a gross motor delay.

 

And now I feel bad.   Because he has been complaining since we got here that he tires easily, that walking more than a few blocks is too far for him.    Whenever we are out for long, he asks to be carried or to ride in the stroller and I’ve let my husband tell him he is too big to ride in the stroller.***   Only, he may be big but it has become painfully clear that it IS harder for him to walk than it should be, that it is exhausting, that we are asking him to do something that takes extra effort.   And I feel bad for not being as sensitive as I should have.

 

So now that we know this so clearly I am going to have a change in tactics.  We have a double stroller type contraption we can (and do) use with him.  We will use it when we walk any distance in our area.   It won’t work on the T so he will have to walk but we will be more considerate about allowing him to rest or to let his little brother walk (while the eldest rides) in sheltered places.   We will keep working on his stamina.

 

As bad as I feel that I’ve asked too much of him, part of me is still enjoying the I told you so moment.   I’m not crazy.

 

***  Do you remember that stupid website toobigforstroller?  I think that was what prompted his “He’s too big for the stroller!” campaign and “He should walk”

I couldn’t ask for more

For two solid years, I have been perseverating about my son’s first day of Kindergarten.

 

Yes, I know that is neurotic but it was not without reason.    I missed his hearing loss.  I missed his second hearing loss.    He struggled to explain himself; he still does.  His little brother uses language as complex as he does.  He’s easily frustrated, he has meltdowns, he hits.  He doesn’t hold a pencil properly.  He is exhausted easily.   He can’t fasten his pants or start a zipper or put on his shoes.

 

He required so much attention in preschool.  His teachers were saints.  They did a lot of ‘problem solving’ with him.. (he hit someone and that was how they handled it).  It became a good day if he only hit a couple of times a day.

 

But his first days of school were great and I couldn’t ask for more.

First Day Blues

My baby is in Kindergarten.  It did not go well.

Let’s start with the weather.  It’s awful.  Cool and rainy.  In fact, it is raining harder now than it did during Hurricane Irene.    Water is starting to stand in the streets.    While I’m grateful everyone has rain boots and good jackets, we were still soaked between the bottom of our jackets and the tops of our boots.     When my son woke up this morning, he looked out side and said that it was too dark, he would go to school when the Sun came up.  Honey, it is as up as it is going to get today.

We got there later than I had intended and half the class was already there.    He always does better when he is the first or one of the first in the room.  It gives him a chance to settle down, to adjust to the room and have it slowly change to full about him.    We got there and put our lunches away, signed in, found his nametag, hung up his things and then fell apart.  He was supposed to find something to do.  He didn’t.  He couldn’t.   Every table had someone there and he said he didn’t know how to play with any of the toys.  Mind you, these were alphabet puzzles, lacing letters, unifix cubes.

It doesn’t help that many of the other children already had a year of Junior Kindergarten there and knew each other.
We finally had to just leave him.  I think he melted into a puddle.

I’m sad.  I wanted him to have a great first day and I know it was unreasonable for me to expect anything different from him.   I also know that things will get better in a few weeks but still, I am sad for him.   I wish things weren’t always so hard for him.

Update:   His teacher who clearly is a saint called me two hours into the school day to tell me that he’s doing beautifully.  She gave him his toy we had left in his backpack, he stuffed it in his pocket and did everything she asked.  He participated, he did his job.  He had a great morning.  I hope the rest of the day goes as well.

Yes, I cried when I got off the phone with her.

Neurotic

My oldest son starts Kindergarten in two days.   I’m so scared for him.   He’s had an IEP since before he was three.   He has a mixed expressive receptive language disorder and words like sensory integration, autism and pdd-nos have been thrown around for quite some time.  While the first label is a clear fit and is clear in meaning, the last two (often used interchangeably) I’ve been fighting because I just don’t think they fit.  Yes, everyone thinks I’m crazy but tell me.. how many autistic little boys know when to tell their mother she’s pretty? or see a strange mom with a stroller struggling with a door and run to help her?  or can redirect their little brother to a safer activity with a word and a hand without adult prompting?   Yes, something is different about this child beyond the speech disorder but I’m not convinced its autism.

 

Still, whatever it is causes significant issues for him.   His hands are weak (as are mine).   He tires easily.   His fine motor skills are behind.  His gross motor skills are behind.  His speech is behind (his baby brother uses language at least as well as he does though the concepts the baby expresses are simplistic compared to my oldest).  His self care skills are behind.    He’s just very young… younger than a just turned five year old should be in my mind.   I could spend days talking with his teacher, the principal, the speech therapist, the school psychiatrist, the occupational therapist and the janitor for hours, they don’t have the time and I’m pretty sure that there are something I don’t have the words to express.   And while I tell the staff about things like meltdowns, aggression, frustration, the IEP and how hard it is to express himself, that’s not what really eats at me.

 

I am afraid he won’t make friends.  Or if he does, he won’t be able to keep them.  It is so hard to understand what he’s talking about.  He could be thinking about some movie and telling you all about it but if you don’t know what movie he’s talking about, you are lost.    It’s hard to talk with someone when he’s only able to tell you half of the story and uses words oddly in the process.  It’s hard to talk to someone if you aren’t sure if they are listening.  It’s hard to talk with someone when he sometimes interchanges she and he, yes and no.

 

I am afraid he will be a target.   I am terrified that at some point some kid is going to hear him talk and then “Retard”, “stupid!”, “dummy”, or “baby.”    I don’t know what he would do or if he would even understand.   Of course, maybe it has already happened at daycare and I just wasn’t told.     Maybe he will yell or hit or bit.  Maybe he will just stand there confused.  What if someone starts to bully him?  I don’t even know if he knows how to tell someone.

 

I am afraid he just won’t try.   I hear the words “I can’t” and “I need help”  all the time.  He can’t buckle his pants.    He can put some of  his shoes on but won’t try most of the time.  He says he needs help to put on his underwear.. a task he’s been able to accomplish for almost two years.    He can count to 30 but tells me he can’t.  He can read some words but tells me he can’t.  He can write his name but wants me to hold his hand.  He’s afraid to try.

 

I am afraid I missed something else.   I missed his hearing loss.  I missed the speech disorder blaming it on the hearing loss.   What else is wrong that I am missing?  Why does he hate to walk any distance?  Is it boredom?  Is he just not conditioned to it?   He barely picks up his feet, shuffling along.   Why can’t he hold a pencil properly?  Why can’t he button his pants or securely grasp a zipper?

 

The worst part is that because the first special education teachers had such a negative evaluation of him I’ve been left with this feeling that I have to protect him from people underestimating him, that if I allow things to progress at his pace he will be in a home (yes, that’s a gross exaggeration.. more likely my basement).   I feel like I have to stand between him and the dark future that bitch saw for him.   I’m not going to give up and let him become an adult who can only read at the 6th grade level.  He’s smart.  So smart.

 

 

Yes, I know how neurotic I am.