Tuesday, August 24, 2010

IEP spells anxiety

Next week school starts and I am in a total rush to get everything done.  so the following is a rerun of a very early post of mine. I hope to be back in regular posting mode next week. Until then, I hope that you are all enjoying your summer. 

"I have never let my schooling interfere with my education". ~ Mark Twain

  The schedule for my boys I.E.P (individual education plan) meetings came in the mail a month ago, and I still haven't signed and sent them back. It's not intentional, this procrastination-really, I don't do it on purpose. It's just that schools make me anxious. I don't fully understand it myself. It is as if the minute I walk into a school building-poof! I'm an awkward sixteen year old. I think that part of this anxiety stems back to adolescence. As a kid, I wasn't what you ever would have called an "ideal student". I spent an awful lot of time in offices....the principals, the dean of students, the dean of studies, the headmasters..(and it wasn't to discuss literature.) It's not that I was a bad kid...I was just a little "high spirited"...perhaps... a bit more. (but hey, who here is going to argue? It's my story and I'm sticking to it.) I don't have trouble behaving as an adult in day to day life. I am responsible, a good parent-I pay my bills. It is just that I never think of myself as one, and it astounds me, when other people do 

   When we first started to deal with school and my sons needs, I had a positive attitude. I wanted the best for my boy, and I was eager to get together with a team of "experts" to start planning his education.I put all worry aside. Anxious? Not me! I would be an adult, both in words and in actions. I would carry a notebook AND pencil! I would write things down, take notes, ask questions-make things happen. I was a parent to be reckoned with.

  Our very first I.E.P. meeting was seven years ago. My son at the time was three years old, and in the process of being diagnosed. We were having a meeting with our case worker, the special ed nursery school teacher, the occupational therapist and the speech therapist. I was excited to get help for our boy. I looked forward to finally getting some answers and advice. This was my first real foray into the world as a mother, and I so very much wanted to make a good impression. Before the meeting started, our case worker took us aside and said "I have to warn you...the speech therapist stutters." I thought "Why is she telling me this?... Does she think I'll say something?" We sat down and began making introductions. Everything was fine-until the speech therapist spoke.sigh... It all went steadily downhill from there.

  Saying that he simply had a stutter was an understatement.. Every single word was broken down letter by letter, or they were clumped up and spit out all at once. "He he he he he he ll ll ll ll ll o o o o o o o"...he said, "I wwwwwwiiilllllbeteachingyoursonspeech... I quickly looked around the table- No one was reacting.- Didn't anyone else notice? He went on.."I I I I jjjjjustwwwwwwawa wawawawanted totellyouhowhahahahppyIamtobeworkingwithyour sosososon" Didn't anyone else see this? This COULD NOT be real!  THIS was the person who was going to model speech to my non verbal son??? Am I the only one who notices? This was my expert? I was stupefied, incredulous...I started to panic ...I remember thinking "This HAS to be a joke..Am I being punked? Is this Candid Camera?" ( It was that ridiculous) and then..sigh.., the inevitable happened.... I started to laugh, I had to...it was if I were possessed. I didn't want to -really, I didn't. I tried stopping it...I must NOT lose control! But, the more he spoke, the more I sweat. My upper lip was moist, my armpits drenched..I was shaking. At this point- everyone is looking at me-as if something were wrong...WITH ME! Every time he would start to speak, I would giggle..in tandem. He would say "K K K a a aaa-and I would be breathing/giggling H H H a a aaa- simultaneously.. I was rigid yet quivering at the same time.. "Whats the matter, are you o.k.? someone asked. "No, I'm just not feeling very wehehehehell." It was horrible. I was so flustered...I was losing control . I started finishing his sentences for him...I COULDN"T let him speak. I was desperate to make it stop! Desperate! Finally... After what felt like an eternity-the meeting ended. I was a wrung out wreck....exhausted and so ashamed. I would NEVER make fun of someones disability. It was the situation that got to me. I had gone into that meeting with such hope. We did not know what was going on with our boy. I had expected answers-help. I definitely had not been expecting what they offered.

  It has been seven years and many I.E.P. meetings since that awful day. I have learned so much in that time. Both about myself and my kids. I am one of my children's best experts. I am no longer afraid to ask,and sometimes even to demand, the services that they need. I am however, still anxious when it comes to school offices. But I am working on it. I will mail the I.E.P. forms out today....if I remember to. Sometimes it's tough being a "high spirited"..... adult.

Friday, August 20, 2010

A wonderful resource.

I am really quite flattered to have been asked to blog over here.  I am now officially part of the "Global Autism Community. Every day they share a variety of different posts from funny to serious. It is a wonderful resource and a place to find new blogs and share different points of view. It is well worth your while to check them out.
Especially since..well..my post is up. :)

Tuesday, August 17, 2010

Uneven, itchy and skin too small....

"Life is short, the art long, opportunity fleeting, experience treacherous, judgement difficult."

  "Mama can you pat me on the other shoulder?" "What?" "My other shoulder...you need to pat it." "Umm..Why?"  "Because you patted this one..now you HAVE to pat the other one-to make it even!" "Even." "Yes! I like everything in twos..nice and even...so you have to pat me."..."No." "What?"  "No..I won't..I can't" "Why?!" sigh..."Because once you start with making things even..it gets worse..you start to count things..ceiling tiles..floor tiles..road lines..and before you know it, you are quitting your lucrative job as an artists model because counting has taken over your life!...Trust me-that is no way to live!" "But..... I just want you to pat my shoulder." "I won't do it to you buddy..I can't as your mother, in good conscience lead you down that path!"  This was followed by a very long afternoon in which my boy,( behaving as stealthily as a gangling legged eleven year old can be) attempted to get me to touch his other shoulder. We actually had quite a lot of fun. He would jump out from behind doors..sidle up to me...he even put things on said shoulder in an attempt to lure me into patting it. We had a great time.  More importantly, I got him out of the "making things even" frame of mind-if only for an afternoon.   It is the end of summer and the school year is looming ahead of us..Let the anxiety begin!

  This is an awful time of year for all of us. Looking back to the beginning of Summer. Oh I had such plans! So many ideas!  We would work on math and science, take long walks..watch documentaries. I even thought about trying crafts! HA!  Me and crafts-that is a joke. Give me a glue gun and some sticks-and you'll wind up with a mess.(Give them a glue gun and some sticks and you would have an advertisement for industrial cleaners or sedatives)  Who am I kidding?..It seems that in all my planning I forget a few essential things. Like asking them what they wanted to do.  Sometimes I forget that I am surrounded by some very strong individuals-who differ in age..interests,,and emotional levels.Working one on one hardly ever happens at our house.  It is usually all or nothing.    We did do things as a family..we took day trips, have gone hiking, we even went camping with friends . It's just that I feel as though I didn't prepare them...work with them enough..get them fully ready for the next school year. So the anxiety sets in..for the kids as well.

  This is a big year for us.  Sammy is going off to the middle school, Lily is in second grade,  Oscar fourth..and my baby girl Zoe is going to pre-school.  As for me?   I will be alone..by myself for the first time in almost twelve years!  So we are all a little edgy..jumpy...loud. None of us seem to be fitting in our skins.  There is a lot of very loud laughing and crying and eeeeeing and repetitive behavior. Being that I am the primary herder-it is all directed at me-and I am overwhelmed. I feel as though I am running around putting band aids on issues and helping no one. sigh... If only they could take turns with their anxiety.

 The sweetest thing about all of this is-that they worry about me. They worry that I'll be lonely..that I won't know what to do without them around.  "Oh I'm sure I'll find something to keep me busy while you are at school" I tell them- trying to keep a straight face..while in my head I am dancing a jig...surrounded by books and coffee..  Although,to tell the truth, I am a little anxious.  I don't think I remember how to do anything without constant interruption. Will I have the urge to suddenly drop what I'm doing and make snacks-only to wind up wandering through my empty house (in dirty pajamas ) looking for someone to give them to? sigh... I'm afraid my dogs are going to get fat.  God!  When did I become such a ..a mother!  Will I never learn to relax? If only there were a support group for us disenfranchised parents. I can imagine what it would be like..held in some musty church basement..squeezed in between the A.A. and the O.A. meetings..I would be the one hiding in the back..to cool and reserved to join the circle..until I was forced to testify.  "Hi I'm Kathleen and I'm a redundant stay at home  parent" .."Hi Kathleen.." And thus I would tell my tale of snack bags..and woe..Sigh..I know that  in a couple of months or so, after everyone is well into their new routine and settled  into the rhythm of the  school year (probably just in time for Christmas vacation) I'll start thinking of things that I can do. It's just hard right now, to realize that my services in the home will no longer be needed as much. Just like that...And.... I don't even get a gold watch.

Oh deep down I know it will be alright.  I already have more than enough to occupy my time with. It's the wide open space of possibility that makes me nervous. Excited as well. I look forward to filling it up. With what?  I'm not sure-But I can say with absolute honesty it won't involve glue guns or counting.  

Wednesday, August 11, 2010

Playing it again...

"I repeat myself when I'm under stress.  I repeat myself when I'm under stress"
King Crimson

I wrote this post a little over a year ago in response to another post on AoA. A post in which a mother bemoaned the idea that her "recovered child" was not the same child she had given birth to.  That her "recovered" child was somehow "less than" what she believed she ought to be.  Today, AoA is promoting another blog. "Lives lost to autism" with the tag line "For many, autism can be deadly". I am gob-smacked. The thought that someone is promoting the idea that my children are a tragedy waiting to happen-enrages me.I am all for more supports and services-acceptance and inclusion for all autistic people. But until we recognize that they are indeed PEOPLE-HUMAN BEINGS, instead of tragedies or something to be mourned, we are going to get nowhere. This shameless promotion of horrific events in order to promote an agenda-or platform needs to be stopped. So once again, I will share this post.  It is my way of combating this awfulness...

"Scared Lost and confounded-but finding my voice"

I look at them, these children of mine. Each so different..so complex..so absolutely divine. I think about autism...and that three of mine are on the spectrum....each in different places..different needs..different people.

I think about my oldest, Sammy. How when he was a year old..he seemed to disappear..slowly going into his own world..a world without eye contact..a world without speech. I think about how scared I was..and lost..and utterly confounded. About how to get him back. I remember when I realized that he had never left..that he was always there...always listening. Always hearing..my voice. How important my voice was.

I think about Oscar..who for so long could not speak..could not ask..could not tell. I remember when it seemed that all he could do was scream..And again I was scared..and lost...and utterly confounded. I remember thinking I can not do this..and then thinking if not me then who? I remember when he discovered music..and could find peace. I remember rocking him to that music and his heart beating next to mine. I remember sharing that peace. I remember when I was his sole voice and realizing he was the voice of my soul. I remember how important my voice has been.

I think about Lily who is not on the spectrum. Whose voice and opinion are both so loud. I remember looking at her and thinking how do I do this-she is not like them. How scared I was and lost and confounded. How would I raise this girly girl next to brothers who are so different?
I remember looking at her, playing alongside her brothers..adoring them and simultaneously driving them crazy. I listen to her tell company "this is my brother Oscar...sometimes he says "eeeeeee"!" There is no shame, no contempt. It is what it is and it suits her. I recognize in her, my voice. I realize its importance...its impact.

I think about my baby girl Zoe. Who just now is in the process of being diagnosed. This time, I am not so scared, nor lost, nor confounded. I just have to look at my other three and see that there is nothing to be afraid of. I think about how overwhelmed she gets in crowds with noise and change. I think about how she looks to me to keep her safe...how she will snuggle in close to hear only my voice. I think about how important my voice is...

I think about the post on AoA..in which a mother speaks of death, and hatred, and disgust..I think about her child. I think about the voice that she hears..and I am confounded and she is so lost. I think about using my voice..to silence this vitriol.

Mostly, I think about my children..and what a privilege it is to be their mother..and an honor and a joy. Through them, I have found my voice...and I am no longer scared.

Tuesday, August 10, 2010

No more nipples...the end of an era..(we think)

"Pretty much all the honest truth telling there is in the world is done by children."

 Oliver Wendell Holmes

   I guess that it had to happen eventually. That there would come a point when Oscar's yelling out of words would backfire on him. Most of the time he is only trying to be funny.  He  puts together combinations of words and yells them out  just to make us all laugh. This is his sense of humor. I can't tell you how many times he has come to me saying "Mama! I have a new joke!"..."Lets go to hairy world!" or "Scratt got nuts!" and then falls down laughing. He is the king of the one liner..except he is the only one who can make sense of them. The thing of it is-well..his laughter is contagious...infectious..you just can't help yourself..try as you might you  always wind up laughing along with him. Sigh...this has only encouraged him.. It isn't like we don't work on this with him. He does know that in no uncertain terms is he allowed to yell out "Underpaaaaaaaaants!" or anything else like it at school .He really works hard to control it..

 There was a time before he discovered "one liners" when he was more of an" observational" kind of kid. Times where he thought nothing of pointing out certain "features" of the different people we saw. ...There was many a time when either Omar or myself had to jump in front of him before he noticed something or someone..because when he did...there was NOTHING we could do to distract him.I could try and tempt him with candy-toys..Cover his eyes...I could stand on my head and sing the entire score of "The Sound of Music"-backwards...and he would not be deterred!  He would ever so slowly ..point his finger and in a strange monotone(but very audible) voice say things like "Sheeeeeee's faaaaaaaaaaaaat" or "heeeeeeeee's a giiiiiiiiiiiiaaaaaaaaaannnnnnnt"and my personal favorite "He has noooooo legggggssssss" over and over.  It aged me.  It took lots(years) of explaining, but we finally got it through to him that people knew what they looked like and didn't need his help recognizing it..That pointing out someones weight, height or lack of limbs might hurt peoples feelings .Oscar doesn't have a mean bone in his body-the thought that he could be hurting anyone horrified  him.  He just simply didn't understand that saying someone was fat or hairy..or anything else might be hurtful.  Because to him it was truthful. sigh... Whoever said "The truth will set you free" DID NOT  have children.

  He has gotten so much better in his verbal observations. Now, he tries to say things of a more complimentary nature. Like pointing out someones new shoes or haircut. He likes to make people feel good, and especially to make them laugh.   Last week, Omar had some vacation time, so we took a bunch of little day trips. We visited a farm, an animal  preserve, went hiking, camping and even went on a whale watch (didn't see any whales-but did get to observe a rather large amount of people getting seasick). It really was a wonderful week....with a few little glitches..like-the girls fighting, or Lily demanding to go home after we were dropped off by boat on an island for an overnight camping trip. (We were the only people there-and there was no way to leave until the next morning when the boat came back.)  as I mentioned...a few little glitches-and one big one. While we were on our farm trip (it was an Alpaca farm) Oscar, being in a very goony mood, and as we were on a farm... decided to yell out one of his favorite catch phrases. "FARMERS NIPPLES!" he joyfully exclaimed and then laughed hysterically...not realizing that a farmer was in fact standing not ten feet away. It wasn't until an extremely mortified Sammy pointed this out to him that he realized what had just happened. He was dumbstruck-turning first bright red and then extremely pale. He felt awful. I on the other hand wanted (wanted but didn't) to burst out laughing. That poor farmer. I remarked to another parent later, that I feared he (the farmer) had been traumatized. And I could just imagine him going into his house and anxiously staring into the mirror wondering about his..nipples.  Were they showing?

  It has been over a week since the unfortunate "nipple" incident.  I haven't heard Oscar say it since..and I find myself wondering if thats the end of it. Which in a strange way makes me sad.  It was one of Oscar's all time favorite things to say...I think he's going to miss it.  But, knowing my Oscar, I'm sure he will come up with something equally as interesting-sooner rather than later. In the mean time..I'll just have to hope that the farmer and his..well...nipples are doing o.k.    


Monday, August 2, 2010

The way it is..

"Well I looked my demons in the eyes, laid bare my chest, said "Do your best, destroy me.
 You see, I've been to hell and back so many times I must admit you kind of bore me."
Theres a lot of things can kill a man, theres a lot of ways to die
. Listen, some already did and walk beside me.
 Theres a lot of things I don't understand.
  Why so many people lie.
  It's the hurt I hide that fuels the fire inside me."
Ray Lamontagne

  I don't think I can really remember a time before autism.  Oh sure, I can divide my life in pieces..There was the time" before kids" and the time "after kids". There is a clean divide.  There was a time when we had so much more freedom..and a time when we had lots less. Kids do that to you. Now, as they get older, I find myself having more freedom again.  But it isn't the same kind as" before kids".  Because no matter what, they are always on your mind, there are always pieces of them that travel with you. Kind of like a backpack crazy glued to your heart.  I think it is just the nature of being a parent.

  When I say that I don't remember a time before autism, I mean that my kids were always autistic.  I don't know having children any other way. I never lamented their being anything other than who they are, because they have always been who they are. I had nothing other than themselves to measure against. Does that make sense?  How could I possibly mourn something that never was. I'd much rather celebrate what is. I guess in a nice way I'm saying that I don't understand when I hear about parents speaking desperately of "recovering  their child". I always think" recover?"  "They're right in front of you"!  Understand, this doesn't mean that I don't help my kids, work with them,or get them the services and supports they need.  That is my job-my responsibility.  It is called being a parent. Whether my kids are neuro typical, have three heads or autism-it is what a parent is supposed to do. 

  I know that people mean well when they say things like "I don't know how you've done it" to me. But it really annoys the crap out of me. How I've done what?  These are the only kids I've known as a parent. I don't deserve a medal for that. That doesn't mean I wouldn't like a medal though..NOT for raising autistic kids-but maybe for getting them all fed, and dressed in clean clothes on a daily basis, for not losing my patience (too much) when they can't find their shoes, or when they are fighting over one thing or another. Yes, there are days when a parade in my honor would be nice. 

  Believe me, I am in no way minimizing what it takes to raise children with disabilities. The early days with my boys were some of my hardest. There were years of sleep deprivation of ceaseless screaming, times when I became a punching bag because I thought that was better than letting them slam their heads into the walls or the glass windows. There were times when I wanted to quit-to give up, to run away from home and join the Foreign Legion. Oh the powerlessness I felt.  Because I was their mother-and I didn't know what to do-how to help them-to make their world right .But  never-not ever, NOT ONCE did I hate them, or blame them, or wish them away.  Those feelings were instead directed towards myself because I felt helpless. Like a failure. I was the Mom-it is MY JOB to makes things right. My job to figure things out. To make their world better. It wasn't up to them. I have never been burdened by their disabilities-but rather, my own inability. Although I look at them now and think we've done o.k. They continue to develop and thrive. Sometimes I think it is because we let them just be. Wait!  Before any nay sayers start with their naying..Letting them be means simply that although we got them services and supports-and have continually helped them to learn and grow-we never treated them as if they were" less than" or" broken". Got it? So I don' think that I deserve a medal for doing my job. (although if you would like to send me chocolate or coffee, I won't complain)  I chose to have children. That is where my choice ended. These are the ones I have. Case closed.

  The past week or so the online autism community has been abuzz with a couple of stories. Two mothers did the unthinkable. They murdered their children. One of the mothers killed herself as well. The reason given in both cases was that they had autistic children and were overwhelmed by it. Some prominent people in the community are using this as a platform. Claiming that this is just the beginning-that we are going to see more and more of these stories because not enough is being done to help parents of autistic children.  No mention is made of the innocent victims-nor of the probable mental instability of the mothers-none. Nope, it is all about the evil autism...and I am reeling. Yes, there does need to be more done-more services, more programs-more support.  I don't argue that. However, I find it morally reprehensible that it is being argued for in this way. I also find it offensive....and a lot of other strong words-that I don't use on this blog.(but I do use in regular life)

  I came across another parent's blog this past week.  It was by a mom who was raising a child with medical issues.  Sadly, last week her daughter died. In her post she spoke of her loss her agony..her girl..and of how she would miss her for the rest of her life..the rest of her life. I thought to myself.."parenting never ends" (I say that in a loving way).. I know that when I look at my herd..at each individual child-at all that they are..I can say the same. Because no matter what..regardless of how they are..what they look like..who they become..I will fight for them, work for them and advocate because I am their mother..and I will love them for the rest of my life.