Saturday, March 17, 2012

Biting my tongue tripping over memory lane...

~"The past is never dead, it is not even past."  ~William Faulkner 



  "Mama?...Why doesn't Oscar want to play with me?".."Well...why don't you ask him?" "I did..He says he doesn't want to play..he just wants to be on the computer..That's all he ever wants to do!!." "That's not true Sammy-there are plenty of times when Oscar plays with you.."I know but I just wish he wanted to play more!" "I know bud." "I just don't know why he doesn't act like me!!" "Because he acts like him!"  "Why?!" .."Well...what do you mean?" "He's always watching the same things and yelling out the same words and laughing." "Yeah...?" "Well why does he do that?" "I..well..I don't know...you know, it wouldn't hurt to ask?"
  "Hey Oscar"..."Yes Mama?" "Why do you keep yelling the word "pingus" and laughing?" "It's "Robotnics-the last pingus vendor....from YouTube."  "So why do you yell the word "pingus" over and over and laugh?" "Because it's funny."..."But WHY is it funny?"..."Because it is from "Robotnics"..."And?????" "It's funny" Well,  I guess that will just have to do-explanation wise. Oscar struggles with "W' kinds of questions. (when, why, who, what)  So I'll just to have to take his explanation at face value...and really, after hearing him rewind the YouTube video (to that particular word) fifty million times..and then yelling "Pingus" over and over and laughing...it does start to sound funny..Or I have just lost my mind...It has been a difficult time here at chez Herd lately..

  With Oscar going through so much (new school next year, changes in routine, difficulty concentrating,...) we decided to have another evaluation done.  He's a great kid (always) who is capable of so many things-sometimes. *SIGH*  Sometimes meaning that he can do something on one day-and on another..it's like he draws a blank. He will learn something new..and the next day-forget how to do it...only to be able to do it again days later. This has been a HUGE challenge for the people who work with him.  They, like me-don't want to push him into doing things he is just unable to do.  But, at the same time..we don't want to not push simply because he isn't interested in trying at the moment. Oscar struggles.. with sensory issues, self expression..pragmatic language...and sometimes...sometimes he's just lazy. Hey-he is an eleven year old boy first and foremost!   It's the separating of the boy from the disability that we are all having trouble with..(school wise) Thus the new evaluation...

  Two weeks ago we had our first appointment. As I sat in the waiting room, I couldn't help but remember the first time we had done this(seven years ago-with Oscar).  We knew that he was on the spectrum.. What we didn't know was how to help him. We were really hoping to get some answers. Which we did-sort of.  The team of diagnosticians were very nice-they weren't exactly jumping in with advice...we were told "We only do the diagnosis..we don't involve ourselves with schools, services or planning"..in other words "Here's your diagnosis-don't let the door slap you in the ass on the way out.". It was terrifying. What should we do-how should we do it?  This was our boy-and we hadn't a clue as to how to help him. *sigh*   There was nothing for us to do except to  muddle through the best that we could.  I look at our boy-our beautiful son seven years later-and think we might have done alright by him. He is wonderful and funny and just joyful. Really, there aren't enough adjectives to describe the incredibleness(made that one up) that he is.. So as I sat in that waiting room, I thought to myself.."This time-this time will be different..this time we know what we are talking about..we know what questions to ask..this time we will get some answers-we will make things right for him.."

  The pediatrician was a very nice woman who had a lot to say.  A lot. She introduced herself to Oscar...and then she sent him to the play area so that we could talk..and talk she did.. "So, you wrote that you had concerns over anxiety and that he is easily distracted." "Yes." And off she went-hardly letting us get a word in edgewise-punctuating all of her points with a smile..Like she was giving us friendly advice but was afraid to offend.   She said things like "ADHD can be co-morbid with autism...do you know what co-morbid means?"(smile).."Yes, we do".."Well, co-morbid means...blah blah blah..."(smile)..I bit my tongue.
"So, he doesn't like to try different foods?".."No..he will try something new-but always says he doesn't like it".."You know, you have to make him try new foods..blah blah blah..(smile)." I bit my tongue.
 "I see that he doesn't like to leave the house".."No-he really doesn't, unless it something he likes to do." Omar at this point discussed what we do when we go out out.had she listened, she would have heard all the things that Oscar does-on his own-in the world...but instead.."Well-he HAS to go out and do things! (smile)I bit my tongue...how do you expect him to be an adult in the world if you don't make him have new experiences(smile)(my tongue is starting to hurt)..maybe he would work better with someone else(smile)(my poor tongue)...Who do you have to support you?  "Each other"  "You don't have support? Why isn't he in a social group? You really ought to consider a home aide who will bring him places and make him try new things(smile)(my tongue really hurts now)..he probably would go out and do things with someone other than his parent..and really..you can't possibly do it all."(BIG smile)(I am close to biting my tongue in half)
   We just sat there and let her go on..let her tell us how important discussing puberty with someone on the spectrum was..Not that she paid any attention on how we have already gone through this with our other son ON THE SPECTRUM..(who by the way- is quite proud of his arm pit hair)..She was so full of....herself knowledge and information..I think she might have exploded had we not let her just empty herself of words. I say that with a big grin. It isn't like she actually listened to what we were saying.  Really, she could just tape record herself speaking-leaving a blank where you could insert your child's name.  I think I might lay the blame at our regular pediatricians feet for this.  He had told her that we were knowledgeable-well informed..I think she took that to mean "know it alls"and had to prove through incessant talking that she knew MORE...or maybe she just likes the sound of her voice.  Either way, it was a huge let down.

  As we were walking out to leave, carrying a huge pile of forms to fill out and gigantic headaches..she called out "I'll send you information on puberty in the mail"(smile)(I may have severed an artery in my tongue) We just nodded our thanks and left. I think that we both felt a bit deflated.

   We had gone in with such high expectations..On the way home, I said to Omar.(which was hard- remember my tongue)."You know, all this would have been great seven years ago.." he said.."Lets just get through the rest of it...we'll take any information that will help Oscar and just ignore the other stuff".(.My Omar is a smart guy).  Our next appointment is in two weeks.This time she will work with Oscar.  I hope that she see's the person that he is..how much he has accomplished...how hard he tries.  I hope that she lets him get a word in edgewise.  I swear if she doesn't-I'm just going to look at her and yell "Pingus!" and laugh hysterically while I of course...smile.  My tongue should be healed by then.

9 comments:

farmwifetwo said...

I've learned to be rude over the years. We were bullied during our ABA year and between it and a few school stunts I've learned to not suffer professionals gladly. If not there are many that seem to be pleased at their ability to talk down to you. A quick "I know all that, we've been at this a long time" tends to shut it down.

I think over the years the "professionals" have been much more stressful that a child on either end of the spectrum.

Anonymous said...

Great post! I think you should send a link to your blog to the pediatrician. Offer it with a smile!

Love, Ei

Lizbeth said...

My Omar would have had to hold me back with ropes and several good knots. Oh my word, don't you love when the experts talk AT you? This is the one time where I don't mind my child going in and being as socially inappropriate as he can be. Maybe it will help her remember why she is there. I don't know.

Our boys sound so much alike. The not wanting to leave the house unless HE wants to, the computers, the food...I could go on.

I do hope when she sees him, she also sees what an incredible boy he is. And remembers that's due to you.

K Wombles said...

I agree with fw2. It would be nice if more professionals listened to parents, waited to hear what they knew.

Every time the pedi runs on, definitely shout pingus at her!

K Wombles said...

Oh, and I don't like to leave the house unless I'm going somewhere I want to, either! :) Makes perfect sense to me.

jazzygal said...

Hahaha...you really made me laugh with this! But, yes it's serious too. Your Omar IS a smart man ;-) I think that now that you know what you're dealing with with this paediatrician you'll be more prepared for next visit and won't let her preach at you ;-)

My guy LOVES to repeat a word he finds funny over and over and over again. For MONTHS on end!!

xx Jazzy

Looking for Blue Sky said...

Hmm I'm finding with our service provider over here that there is no individualisation at all - they offer the same answers to every child, maybe packaged a little differently each time, it sounds as though you are experiencing something similar. And Oscar sounds exactly like my son from this! Which is comforting as I love Oscar :) I hope you get some real help next time xx

Stephanie said...

You know, we've had five different evaluations at four different locations for three different kids--at no point were we actually offered HELP. Unless, of course, you count the advice that we should institutionalize Willy, 'cause that was so helpful and not at all behind the times.

Though, from the sounds of it, I'm not convinced that would have been helpful 7 years ago either--it would have been too overwhelming (at least for me) for anything remotely usable to sink in.

kathleen said...

Hey-sorry it took me so long to get back here...Stephanie! Your comment was stuck in spam...just found it now..seems that now that I took word verification off-I'm getting hit with..well, oddly enough-tons of porn spam...

Thank you all for your comments!!!