Thursday, April 30, 2009

I.E.P. spells anxiety

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.

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. It all went 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 notice? He went on.."I I I I jjjjjustwwwwwwawa wawawawantedtotellyouhowhahahahppyIamtobeworkingwithyoursosososon" Did anyone else see this? This can't be real. THIS was the person who was going to model speech to my non verbal son??? Am I the only one who sees this? This was my expert? I was stupefied, incredulous...I started to panic ... and then(sigh), the inevitable happened.... I started to laugh, I had 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 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! 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 my children's best expert. 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, April 24, 2009

rack and glasses

I was putting my kids to bed the other night-I have a special good night routine, an unchanging ritual for each of them. They all vary from one another except at the end. I always say "I love you" before walking out of their rooms. They usually respond with an "I love you too." I say usually, because lately, my three year old has been adding her unique spin to it.

Me: "Night night don't let the..."

Zoe: Bed bugs bite."



Me:"No more..."

Zoe:"Getting up."


Zoe:"Love you"

Me:"I love you too"

Then, as I was turning to leave...

Zoe:"I love your breasts and your glasses." she smiled, put her thumb in her mouth and turned over...


My breasts and my glasses? O.k., I kind of understand the breast thing. Zoe has always been fascinated with them. When she was eighteen months old, she started putting little beanie baby toys down the front of her shirt. I thought that she was just being clever, that she had found a great way to carry her toys around. I even complimented her on this. "Hey Zoe-you are so smart! You figured out a way to keep your hands free and still carry your animals around...good for you!!" She looked at me(like I just didn't get it) put her hand on her animals and said "BREASTS!" So, I can understand her love of mine(sort of) They are interesting "sticky out" things-and she would like a pair of her own. (as a side note-I've got nothing special-just a standard issue set) But my glasses? I have a hard time comprehending that one...

When I picked out the frames for my glasses, I made the horrible mistake of having ALL of my children with me. Needless to say, I was a little preoccupied and not paying enough attention. I think that the sales clerk pulled a fast one. Seeing that I was so distracted, she convinced me that I "LOOKED FABULOUS!" in a wire rimmed pair that I had grabbed in an effort to just be done with it. I believed her. I did not realize that she was trying to unload back stock from 1973. When I returned to pick them up two weeks later, this time without children, the salesperson was nowhere to be found. She was probably hiding. I put them on and caught my reflection in the mirror. I looked...well, does anyone remember those horrible macrame wall hangings popular in the 70's? The kind with owls on them? These glasses gave me the appearance of a person who could have designed a self portrait. For some reason, the lenses make my eyebrows look unusually large and tufted. I seem to be perpetually startled-maybe because of the enormous bushy growths coming out of my forehead? I needed these glasses. So, I convinced my self that they weren't that bad. Perhaps I just needed to get used to them-perhaps I was over exaggerating. I walked over to the register to pay for them. The salesclerk gave me the total, and said "Are you o.k. with the amount?" "Yes...,Why do you ask?" "Because you look so surprised." "No, I's just my eyebrows." I quickly left the store keeping my head down.

Zoe's admiration of my glasses confuses me-and she is not the only one. Oscar adores them as well. They are a frequent topic of conversation for him. "Mama, you're wearing your glasses?" "Mama you have your glasses?" "Are you wearing your glasses mama?" "You have your glasses on mama?" "Glaaassssessss." I am just thankful he doesn't comment on my breasts.

So now, I am faced with a bit of a problem. It is time for new glasses. How is this change going to affect my kids? I am the first face that they see in the morning and the last that they see at night. Sometimes, changing something as little as my glasses, can have a big impact-and sometimes, it does nothing at all. I am going to risk it. I am weary of appearing perpetually bushy eyed. This time though, when I go to pick out my new frames, I am leaving the kids at home.

Thursday, April 16, 2009

The Easter Charade

Raising kids is one of the hardest jobs that there is. Everyday, is a different challenge, a new opportunity to teach and to learn. There are times however, when I struggle-I am at a loss as to what to do. It is at these times that I look for a role model. Someone who can guide me to finding the answers that I seek. It is times like these that I pull out the "big guns". I look to the person who has done it all. It is moments like this when I ask "What would Mrs. Brady do?"

I grew up watching "The Brady Bunch". In one half hour Mrs. Brady,( along with a little help from Mr. Brady and Alice the housekeeper) appeared to be able to solve any problems that her children faced. I often wonder what she would have done if one of "The Bunch" were on the spectrum. I think that it would have made for some fascinating television. Imagine, the school calling because Jan refuses to sit anywhere but under her desk? Or, Marcia's date arrives to find Bobby spinning and flapping in the living room? What sage words would Carol Brady have? How would she explain things to everyone's satisfaction?

I was pondering this the other night as I was putting the kids to bed. It was the night before Easter, and they were all excited. That is, everyone but Sammy. Sammy is terrified of the Easter Bunny. This fear goes all the way back to when he was eighteen months old. It was a few weeks before Easter and we were out shopping at the mall. When seemingly out of nowhere, a man with a GIGANTIC paper mache bunny head jumped out in front of us. I have, to this day, never heard Sammy scream so loud nor saw him move so fast. He flung himself on top of me-clinging and clawing his way up my body. I think that he was trying to get back into the womb.It took him months to calm down. Needless to say, he has been wary of the Easter bunny and any other character with a large head ever since. ( because their faces don't move.) This bunny phobia was not a problem at first. We simply didn't celebrate Easter. Now that I have three more children, one of whom is very aware of all that Easter can be.(.i.e. unlimited candy for the day ) I have no choice but to acknowledge it. At the same time-I had to make it acceptable for Sammy.

I tried to explain to him that I was the Easter bunny. That I bought the candy and set it out in baskets while he was sleeping. He interpreted this as meaning that I went and picked up the candy from the Easter bunny. He literally thought that I met the bunny in a secret location outside of the house and brought home the baskets. He believed me to be brave. This went on for years, and I admit(sigh), I did not try to persuade him otherwise. I was having way too much fun imagining what such an adventure would look like.....

I always pictured it as a covert maneuver. I would go outside-at midnight, dressed all in pastels. The night would be silent and still...I would stand in the middle of the street and light a cigarette with shaking hands...nervously waiting. In the distance, I hear the sound of floppy feet moving in my direction...I look up, and there standing in the moonlight, in all his cotton tailed glory, would be the Easter bunny. He gazes at me with his steely pink eyes...the wind gently blowing his enormous bow-tie. This, is a bunny who has seen things. He says nothing as he passes me the basket-and with a nod of the head and a flip of the ears, he is gone. Only the basket in my hands and the sound of hopping in the distance, prove that he had really been there. I walk quickly back to the house thinking-"Just who IS that mysterious lagomorph..and whats with the eggs?"

This year, things were different. Sammy was more nervous than usual. He startled at every noise.."Was that the Easter bunnies car?"..."He doesn't drive buddy-his feet are too big"..."I think I hear him on the roof!" "Sammy, he can't jump that high...and besides, you know that I won't let him in the house.." "Maybe he snuck in...maybe he's upstairs!!!" "No buddy-I promise he is not." Our conversation went on in this vein for a while. I felt that I had no other choice but to tell him the truth...explain it so that he could understand. I said "Sammy...can I tell you a secret?...You have to promise that you won't tell your brother or sisters.." He agreed. "Buddy, there is no Easter bunny. I buy the candy at the store, I buy the baskets, I hide it in my closet until you are asleep. Then I bring it downstairs....O.K.? Does that make you feel better?" His relief was palpable. I asked him if he was alright with this...if he wasn't a little disappointed,,that even though he was afraid, the fantasy wasn't real. He looked at me and said " It's o.k. mama, I never wanted to see that big headed freak again anyway." He rolled over and promptly went to sleep.

We had a wonderful Easter. The girls, stuffed themselves with chocolate...the boys, ate frozen pizza. I averted a crisis-and all without the help of Mrs. Brady. Although I do wish Alice were around, my house could use a good cleaning.

Tuesday, April 7, 2009

A boy, his pants..and a yellow string

The signs of spring are starting to appear. It is hard to believe, that just a few short weeks ago, we had nine foot snow banks along the sides of our driveway. After a rain storm and a few mild days...the snow is almost gone. It is time to start spring cleaning. Our annual tradition of scouring the house, cleaning up the yard, and my all time favorite event-separating Sammy from his snow pants. Having done this for the past six years, I can say with certainty, that I have the finely honed skills of a hostage negotiator. Sammy loves his snow pants. Asking him to give them up is, in Sammy's mind, equivalent to asking him to give up a dear and special friend.

Me: Hey Buddy, it's getting kind of warm out...I don't think that you need your snow pants anymore.

Sammy: Yes, I do. I still need them.

Me: But honey, it's fifty-seven degrees outside...aren't you hot?

Sammy: No, I'm fine.

Me:'re sweating, your cheeks are flushed...could you at least take them off inside?

Sammy: No, I want to be ready.

Me: Ready for what???!!

Sammy: There is still snow on the ground.

Me: WHERE???!!

Sammy: Over there by the garage.

Me: You mean that tiny patch of snow the cat is rolling on because he is hot?

Sammy: Yes.

Me: Sigh...

The next morning, I watch as three of the herd get on the bus. Lily and Oscar running, jackets open and flying-their feet, light in sneakers....followed by Sammy, who is plodding along, coat zipped to the chin, hat pulled down over his ears, gloves, boots and...snow pants. It is going to be fifty degrees today. My boy is going to be hot.

The fact of the matter is-Sammy hates change, he always has. He once wore a pair of pajamas that became so worn, that there was more hole than pajama.(he only gave in to a new pair, because they were the same exact style) He has had the same lunch every day for over four years, the same snacks. I think that it makes him feel safe-this sameness. Although, I will continue to persuade...I know that he will take off his snow pants when it becomes too hot. I know not to rush him. He does not like pressure, it makes him anxious.

A few weeks ago, I received a notice from his music teacher. The students were learning to play the recorder in class. She suggested that buying their own recorder would encourage them to practice at home (practice? More like blow on it until you drive your parents crazy) She said that although it was not mandatory that we buy one, doing so would "bring the joy of music into our homes" This from a woman who made "Jingle Bells" sound like a funeral dirge at the Christmas concert. (It was obvious that I was dealing with a sick mind) I looked at Sammy and said "Do you want a recorder?" He kind of smiled and laughingly said "No"! (I was secretly thrilled) "Oh well", I said, "I guess we will have to get our joy from the C.D. player"

Last night, he came downstairs in tears. He could not sleep-he was anxious. It seems that in music class that day, everyone that had bought a new recorder was rewarded with a "yellow string". I have no idea what this yellow string is...what you do with it...or what it symbolizes. All I know, is that Sammy was extremely upset because he did not get one-and everyone else did. He thought that he was missing something, that he was caught unawares-left out of some important social ritual he did not understand. I told him that I would give him money to buy a recorder. He looked at me and said "You don't mind that I won't ever practice?" I said "Not at all." Relieved, he gave me a hug and went back up to bed. I on the other hand, spent the rest of the night silently cursing his music teacher.

Today, after school, Sammy told me that his music teacher had said that they could "goof off" all they wanted to at home with their recorders. "Joy of music"-indeed! (grumble grumble) That's o.k....I noticed that Sammy had finally shed his snow pants. Tonight, I will tuck them safely away in the attic...right next to where I am hiding his recorder. Spring is finally here.

Wednesday, April 1, 2009

Genocide McCarthy strikes again!

She's back! Well, it is autism awareness month, and she DOES have a book to sell-along with co-author Dr.Jerry "Autism as I see it, Steals the Soul from a child" Kartzinel. She sat down with Time magazines science editor, Jeffrey Kluger to discuss autism's possible causes and of course vaccines. It is an article worth reading

Q&A: Jenny McCarthy on Autism - TIME,8599,1888718,00.html

I just have to comment on some of the statements that she made...I just can't help it..

"IF you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the f---ing measles."

Excuse me? Was I absent the day this question was asked? Jenny, I'm sorry that I missed your phone call...but, when did I become a part of "we"? Of course, you could TALK about standing in the measles line...your son was immunized. How bold you are with other peoples children. I am afraid that I have to differ with you on this one Jenny. I think that the measles, its side effects and its mortality rate are much more frightening than autism.

"I do believe sadly, it's going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it's their f---ing fault that the diseases are coming back. They're making a product that's s---."

So Jen, (I can call you Jen, right? I mean seeing that you made me a part of the collective "we...) You are saying that in essence, children may have to suffer or perhaps even die in order to prove your point? Not to negate your intelligence or anything...I understand your education is from google and all..But do you even know what the measles or polio can do to a person? Are you actually promoting the idea of sacrificing lives to gain momentum for your cause? Are you really saying that? Are you that much of a narcissistic egomaniac that you have no problem promoting that people should endanger their childrens lives because of your singular experience?! You discuss "fault",.. how about some responsibility, and where the hell is YOURS?

So are we going to see a rise in court cases of parents suing the vaccine companies because their kids got the measles instead of autism?...what about the parents of the children who get both? What are we going to do then? More importantly, what will people like Jenny McCarthy say... "sorry about the pandemic-but at least we know, death cures autism?" Go Jenny! No, I mean it GO...AWAY!