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.

 

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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”