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”

Advertisements

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.

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.