Tuesday, April 30, 2013

Homestyle Mama celebrates 1000 Ausome Things #AutismPositivity2013

There's an Autism Positivity Flash Blog, I'm supposed to share something ausome about Alex. I know!!! How do you take all of that awesomeness and shrink it down to a blog post!? I don't even think I could only list 1,000 things. But, I have a better idea anyway. Here you go...

Alex's Greatest Hits 2013





What's not to love about this boy? Everything about him is ausome.

Monday, April 29, 2013

Who are you to judge me?

You call ableism, privilege. I call bullshit or say you're right, depending on who you are, and invite you to read my blog.

You call bigotry, I call bullshit.

You say that I am a crappy parent, a lousy advocate. I say that you are right and invite you to read my blog.

You say I don't have the right to be a voice for autism, you say I shouldn't be the voice for my child. I say you are right. I am my own voice, I am my son's translator, and I invite you to read my blog.

You can say nothing about me that I haven't already said myself.

You can't touch me.

You don't have the power to silence me.

You don't have the influence to change me.

You don't have the authority to dictate my life.

Your opinion does not matter to me.

You are nobody.

You are a stranger judging what you don't know and like that stranger, I will walk away from you knowing that your actions are a reflection of yourself- not me.

I will walk away knowing that you are a fleeting thought that has no power over me.

Only I do.

Friday, April 26, 2013

How A School Typo and Betty Crocker Conspired to Make Me Cry.

Yesterday I made a batch of brownies. Now, this doesn't sound like a big deal all by itself but these were special brownies. NO! Not that kind of special! Birthday special! Thing1 turned 19 yesterday. and he loves brownies. so I made sure everyone knew it was his birthday and got to work. I cleaned the house and made some brownies. Sounds simple, right? *snort* EFF BETTY CROCKER!!!

Ok, it may not be her fault that someone has trouble following directions. Remember this?

Alex "helped" me put this together.
He has this new interest in things that spin and really liked helping with the screwdriver.
After having to take it apart (again) to put it back together (again) because seems
the Goofy child got his inability to follow directions from *one* of his parents,
The Goofy one looks over at me just sweet as can be,
"Mom, can you watch your mouth, please?" Well, since you asked so nicely...

Yeah. same thing. but with brownies. So, fine. I got the damned things cooked. and a toothpick inserted 2 inches from the edge came out *almost* clean, as directed. and I sent out an invitation...
Now, don't get your panties in a wad, the boy knows I love him, we just can't say so (he's more comfortable with the I love you's disguised as I don't like you and yeah, I don't like you, either. His opinion matters.) ..."I mopped the f****** floor for you. Hope I didn't go through all that trouble for no reason. Your dad should be home by 5. Ps... happy birthday."

He finally comes rolling in around 4:30 with a smirk of a smile, "You mopped the floor for me? You know I used to live here, right?" We had a nice chat about private things going on in his life, his plans for the day and a little bit of everything. When he left... he left the brownies. untouched. Which meant his brothers got them. along with all of our milk.

This morning, I woke up at 7:44, started cursing, yanked Alex out of bed, got him dressed and munching on Fruit Loops by the front door in a world record of 6 minutes... Standing at the front door, I look at Thing2. "Why are you here?" "I don't have to go to school until later." "...why.?" He looks at me like I've lost my mind, "I don't have Tech today." he looks at me looks at Alex and starts laughing, "that means he doesn't have school either!!!" I ask him to look at the stapled paper on the table. "Friday, March 26- NO SCHOOL- Teacher Workday." Isn't this April? I thought it was April? yup. Typo. assholes.

I take Alex to finish his cereal and watch TV in the safety of his room while I get the littlest monster off of the freaking game so he can get ready. Nightmare. Horrible. Awful. Then he wanted Spaghetti with Jimmy John cheese (just let it go. seriously. he will never believe that it's Parmesan Cheese) and peanut butter and jelly and cereal. with water. because there's no milk. which means that there is no milk for coffee. and I want to cry.

We get breakfast settled and he's dressed. and gone. vanished. I drag him back upstairs to go get his shoes. He says he can't get his shoes with the dog outside so he lets the dog in. Next thing I know, there's a huge crash, the dog slides across the floor amid the clashing, clanging, pinging, splashing of everything that was for breakfast, the dishes that contained them, the bench to the table, the baby seat, and the clutter I wasn't done looking at. The Goofy one's running around being... goofy and trips over the dog, smacking his elbow on the table. He looks at me crying, I look back, "Now, you want to do that again?" *raised eyebrow* (in the tone of my usual, "hurt, didn't it?" and "that's what you get.") He gets up and runs off unfazed. If he was really hurt, I would have been the first to yell, "YOU'RE OK!!!" which is funny to me because every time I say it now, I remember Thing2 falling up the stairs (yes, up the stairs. into the kitchen. with a heavy box) and out of reflex, I screamed at him that he was ok because he scared the hell out of me! He looked at me with this look and said, "I'm not Alex. and yeah, I'm fine." ahhhh, good times.   

and then the Goofy one missed his bus. and I quit. 

Thursday, April 25, 2013

Who Can and Who Cannot Diagnose Autism?

What is autism?


"Autism spectrum disorders (ASDs), also called Pervasive Developmental Disorders, are a cluster of neurobiological disorders that develop during childhood before the age of three. Autism is a different way of thinking and approaching the world. We know that autism is not caused by an emotional disturbance, and it is definitely not caused by bad parenting."

What are the Red Flags of Autism?



A person with an ASD might:
  • Not respond to their name by 12 months of age
  • Not point at objects to show interest (point at an airplane flying over) by 14 months
  • Not play "pretend" games (pretend to "feed" a doll) by 18 months
  • Avoid eye contact and want to be alone
  • Have trouble understanding other people's feelings or talking about their own feelings
  • Have delayed speech and language skills
  • Repeat words or phrases over and over (echolalia)
  • Give unrelated answers to questions
  • Get upset by minor changes
  • Have obsessive interests
  • Flap their hands, rock their body, or spin in circles
  • Have unusual reactions to the way things sound, smell, taste, look, or feel



Examples of social issues related to ASDs:
  • Does not respond to name by 12 months of age
  • Avoids eye-contact
  • Prefers to play alone
  • Does not share interests with others
  • Only interacts to achieve a desired goal
  • Has flat or inappropriate facial expressions
  • Does not understand personal space boundaries
  • Avoids or resists physical contact
  • Is not comforted by others during distress
  • Has trouble understanding other people's feelings or talking about own feelings



Examples of communication issues related to ASDs:
  • Delayed speech and language skills
  • Repeats words or phrases over and over (echolalia)
  • Reverses pronouns (e.g., says "you" instead of "I")
  • Gives unrelated answers to questions
  • Does not point or respond to pointing
  • Uses few or no gestures (e.g., does not wave goodbye)
  • Talks in a flat, robot-like, or sing-song voice
  • Does not pretend in play (e.g., does not pretend to "feed" a doll)
  • Does not understand jokes, sarcasm, or teasing


Examples of unusual interests and behaviors related to ASDs:
  • Lines up toys or other objects
  • Plays with toys the same way every time
  • Likes parts of objects (e.g., wheels)
  • Is very organized
  • Gets upset by minor changes
  • Has obsessive interests
  • Has to follow certain routines
  • Flaps hands, rocks body, or spins self in circles

Some people with an ASD have other symptoms. These might include:
  • Hyperactivity (very active)
  • Impulsivity (acting without thinking)
  • Short attention span
  • Aggression
  • Causing self injury
  • Temper tantrums
  • Unusual eating and sleeping habits
  • Unusual mood or emotional reactions
  • Lack of fear or more fear than expected
  • Unusual reactions to the way things sound, smell, taste, look, or feel

Who can diagnose autism?

 
Psychiatrist

A medical doctor who can diagnose autism as well as other illnesses and treat the mental health issues associated with autism.

A psychiatrist can prescribe medication or other treatments to treat issues such as depression and anxiety, aggression, ADD/ ADHD, obsessive-compulsive behavior, tic disorders, and more.

Neurologist

A medical doctor who can diagnose autism and other neurological disorders. A neurologist also checks the neurological functioning of the body and may order tests such as MRIs or EEGs.

A neurologist can prescribe medication or other treatments to treat issues such as depression and anxiety, aggression, ADD/ADHD, obsessive-compulsive behavior, tic disorders, seizure disorders, and more.

Developmental Pediatrician
-
A medical doctor who is a pediatrician with special training and certification in developmental-behavioral pediatrics.

A developmental pediatrician is skilled in diagnosis of autism and developmental disorders. This doctor looks at the whole child and can recommend treatments including medication.

Psychologist-
A licensed psychologist with specialized training in developmental disorders, such as a clinical psychologist or neuropsychologist.

A psychologist, or neuropsychologist, can diagnose or recommend treatment for autism and other developmental disorders. He or she may address coping skills, behavior management, social skills, and strategies for improving functioning.


How is autism diagnosed?


"A medical diagnosis is made by a physician based on an assessment of symptoms and diagnostic tests. A medical diagnosis of autism, for instance, is most frequently made by a physician according to the Diagnostic and Statistical Manual (DSM-IV-TR) of the American Psychological Association (2000). This manual guides physicians in diagnosing Autistic Disorder, Asperger's Disorder and Pervasive Developmental Disorder-Not Otherwise Specified according to a specific number of symptoms.

An educational determination, in contrast, is made by a multidisciplinary evaluation team comprised of various school professionals. The evaluation results are looked at by a team of qualified professionals and the parents to determine whether a student qualifies for special education and related services under the Individuals with Disabilities Education Act (IDEA) (Hawkins, 2009)."

Who cannot diagnose autism?


Anyone else. Not your child's teacher, not your family, not your friends, not your pediatrician. If they cannot diagnose, they cannot rule it out. This means that the teacher cannot snap across the IEP table that your child is not autistic without an evaluation. Your pediatrician cannot tell you that your non-verbal 3 year old is "just slower to talk" because "all kids develop at a different pace." Your family cannot accuse you of being paranoid. Your friends cannot tell you that you are overreacting or being a lazy parent.

***and while you are sitting there listening to them spew this garbage, know you are not alone. We all hear it.

If you are concerned that your child is not developing on schedule, if you have any concerns, ignore all of those people and get an evaluation by a professional who is qualified to diagnose Autism Spectrum Disorder.






***You can find the original sources for the information I shared by following the links attached to them.

Tuesday, April 23, 2013

Would you, could you Homeschool? #ADHD

That is the question.

The Goofy Child has cast his vote.

Today he comes home with a "5 or below" (serious. that's what it says.)

See?


and these are the past 2 weeks.

So I asked the Goofy Child... who refused to talk to me. so, fine. No games today. Go watch TV. Some of you say, "What!? I would have taken the TV, too!" But here's what you don't understand... The boy is a hardcore gamer. That's all he wants to do. He doesn't want to watch TV, he doesn't want to play with toys, he doesn't want to go outside... he wants to play the game. So, a little while later, he comes back.

Goofy: why can't I play the game?
Me: because you brought home a 5 or below.
Goofy: When can I play the game?
Me: when you sit in your seat and do your work. (Judge me. I don't care. I have a non-verbal kid, there's no way I will ever tell a child to stop talking.)
Dad: Would you rather have a spanking so you can play the game?
Goofy: *eyes light with hope*
Me: *glares at dad* No. Maybe tomorrow (sassy tone) you will sit in your seat and do your work.
Goofy: Maybe tomorrow (sassy tone) I QUIT SCHOOL. and I will never go to school. and I quit.

Later, the Goofy One is laying in his bed, watching TV. I lay beside him to watch the back of my eyelids. It's so good...I'm drifting...almost there....

Goofy: Mom, can I play the game?
Me: When you sit in your seat and do your work.
Goofy: Remember, I told you I quit school.

By this point I'm pretty pissed at the teacher and wanting to call bullshit on the whole thing. I go to my friend and I'm telling her that this. is. horsecrap! Ever since the parent/teacher conference and the call home about his meds, we've been getting these stupid notes! She says, "because he's innocent, right?"

What!?

Hell no, he's not innocent, the kid is BAD! I swear to you today, if the Anti-Christ is walking this Earth...


Uh-huh. Don't let the sweet face fool you. Pure evil. I've known this boy since the day he was conceived. I know everything there is to know about him and there is no doubt in my mind that he is guilty as charged. plus some. It's the plus some that irritates the heck out of me.

Since before he could walk, he's had a temper like you wouldn't believe. Since the moment he opened his mouth he had an attitude that was out of this world and has never considered checking it even once because he's right- always. Since the minute he dropped his first F*bomb, he hasn't stopped mimicking what I say word-for-word right down to the perfectly copied tone. Nothing phases this boy because his way is always the right way, no punishment could ever change that.

I blame his father. It's all his fault. The boy has bad genes.

If his father's DNA had been a little stronger, I wouldn't have a mini-me on my hands. Cloned right on down to his ADHD, his stubborn, defiant, self-righteous, know-it-all, FU, antisocial personality, his black and white thinking, the tendency to thumb his nose at society rules and speak his mind no matter the consequences, his gaming addiction, his hatred of school and his desperate desire to drop out.

So, the answer to the question... Would I, could I homeschool?
HELL NO!
I could not, would not homeschool.

Remember when your mama told you she hoped you had 10 just like you? I do. Mine did. daily. Thank God I only got the one. I sure couldn't handle any more.
  
Then Walter comes home... Mom, remember that D on my report card? It's a B now...

Someone pass that box of wine, please?




P.S.
As further proof that I should never teach any child, much less my own, I present to you the unfinished work of the day...

 
At line 2, I was sure I knew exactly what happened to my mother's sanity and right around line 3, somewhere between "rip, rip, rrrrr-iii-bah" and "lllll-iii-pssss", I briefly considered adoption.

 

Monday, April 22, 2013

Guest Post: Letting Go: The Hardest Important thing you must do as a Parent

 

Letting Go: The Hardest Important thing you must do as a Parent 
By: Tsara Shelton
 
Yesterday I watched my fifteen year old son hop into the backseat of a little white car and take off to the mall (which is slightly over an hour away) with his misfit friends, the oldest and slightly most responsible of them behind the wheel.
 
I hated it. I hated it, I hated it, I hated it!!
 
You would think that by now, by teenaged son number three (with one more to go) I’d be used to—or at least have found some tricks to help me deal with!—this letting them grow-up and go learn who they are with freedom thing. But here’s the problem with that assumption, each one of my sons is a very different person, choosing different types of friends and activities, with different habits and self-identifying labels they need to explore. Each time one of my boys takes off I have entirely new worries and wonderings.  Along with, of course, all the traditional stand-bys.
 
Here’s another problem with that assumption. Each one of my sons is a person I love so much, and my heart can’t stand that I know the very real dangers of the world. No matter how many children you guide toward adulthood, you don’t get used to that.  
 
Each one of our children is a person who absolutely must find themselves in potentially dangerous, possibly heart-breaking, powerfully character building situations in order to become well rounded, confident and free individuals. From the moment our children are born we have the job of letting them learn to leave us, and in truth when they are very little it is kind of a fun job! While they learn to walk we let them fall down and promise them that they can get back up all by themselves. When they want to tie their shoes we show them how and then step-back and promise them that they can do it on their own! It’s fantastic and cute and when they finally do figure it out. The beaming with pride lights up our heart and fuels it for the next lesson!
 
For those of us who have children with special needs, the specifics might be different but the job is the same. Leading them to learn not to need us. The timelines and specific skills might look different, but the goal is the same. Show them that they can do it. Believe in them and trust them and give them the tools, then let go.
 
When I watched my fifteen year old take off with his misfit friends yesterday, I knew that it was the right thing, but I also knew that it was scary and dangerous. My son has challenges with social skills. He is, what he calls, a little bit autistic. And though I totally know better, I have been holding onto him a little too tight because of my own fears. Especially since one thing that has been consistent with him is his choosing of misfit friends. Why, in that car yesterday was a girl who recently ran away with an older man she met on the internet, a boy who tried to shoot himself only to accidentally shoot his dad in the knee, and a sixteen year old girl struggling with cancer and living life on the edge, because she might die. So, I have been offering excuses to avoid letting him party with his peers, or I invite them to hang out at our place so they know I’ve got my eye on them.
 
I’ve also been actively ignoring the part of me that sees clearly how my son fits comfortably into these misfit groups. He likes them and they genuinely like him. He makes them laugh, and they tell him he should stop worrying about his weight, that his body looks good and matches him. He feels comfortable being his quirky self with them and they listen while he brags about his family, agreeing and adding compliments. They are “troubled teens” who are kind to my son and his family.
 
I’ve been hypocritically begging for autism acceptance on my Facebook Page, while refusing to offer adolescent acceptance with his peers.
 
But lately I’ve stopped ignoring and I’ve let myself see:  not only has keeping him home had him feeling left out of peer groups, he has also been talking with his little brother and his little brother’s friends in ways-- and about things-- that are perfectly age appropriate for him, but not for his brother and his friends. Well…duh!
 
How is my fifteen year old supposed to practice social skills (which, as I readily admit, he needs to practice!) if I don’t allow him the freedom to do so? At school or in organized social activities our children are offered manufactured opportunities, but without allowing them true freedom away from the watchful eyes of their grown-ups and mentors they can’t practice and discover and really know who they can be, while knowing confidently that the choices and mistakes they made were entirely their own.
 
Who has ever learned about life without living? And who can discover their own power and personality if they are never offered the freedom to do so? I’ll offer in my defense the very true conundrum of many autism parents and individuals. A person on the autism spectrum experiences the environment differently, and often understands communications differently than the majority of the people around them, and so it’s hard to anticipate what to expect when adding a little autism to the peer group, making it harder to prepare our kids. But, so? If our children are autistic, indeed if we ourselves are autistic, we still need freedom to learn who we are and how to handle the world. Different challenges and abilities will mean different specifics, but always we have to let our children take the next step in the direction of their goals. And always it will be scary. If it isn’t scary, we aren’t really doing it.
 
Also, finding a balance is intimidatingly important and forever unclear. We can’t let go too much, close our eyes and just hope. We mustn’t forget to give tools and example responsibility. We can’t just assume that if their friends’ parents are letting the kids do something, it’s probably fine. Our kids are not their friends. We must watch and trust and give freedom and communicate….
 
It’s our job as parents to step-up and handle that gut wrenching, heart-palpitating fear that accompanies letting go. Whether it’s waiting in the car while they go alone into a public restroom, giving them permission to walk to school alone, or letting them take off with their misfit friends to the mall; it’s our job as parents to let go.
 
Even if we hate it.
 
When my son got home last night he told me that his friends had smoked cigarettes in the car, driven too fast and the girls wore so much perfume he could taste it. “I hope I don’t get cancer from all the smoke I was forced to breathe,” he worried, “next time I’m going to tell them I’ll only go if they don’t smoke.”
 
And this morning he said, “Hey mom, I learned a good way for me to feel confidence. I make myself do something, then I let myself slow down when my confidence is getting low, but I don’t let myself stop. Then I feel so proud of myself for doing the thing that my confidence gets stronger.”
 
So I’m learning from him. I’ll make myself let these fantastic boys of mine learn to not need me, and when my confidence wanes I’ll slow down but won’t let myself stop. My boys have given me so very many reasons to let my confidence grow stronger!
 
 
 
 
 
 
Tsara Shelton is the proud mother of four chronically eating teenage boys, an avid sipper of coffee, reluctant performer, writer of musings, and shopper of groceries. She is the oldest of eight children who were raised with creativity and love by international mental health expert, Lynette Louise. She is a daughter, sister, and mom of autism who enjoys writing about the many fantastic and fun learnings that being surrounded by difference challenged her to discover. A fan of mixing insight and humor, Tsara loves sharing quirky and fun revelations daily with fans on her Facebook page: Autism Answers.
 

Saturday, April 20, 2013

Alex's Adventures in Finding Autism Friendly Eyeglasses

Alex doesn't like glasses.


He does not like anything that comes anywhere near his face that is not going in his mouth. This means he's pretty rough on glasses, we spend as much time fixing them as he spends wearing them.


This time, I'm going to think things through before just grabbing any old pair. I'm going to think about the problems he has with them and what we can do in choosing the glasses to make them more comfortable for him.


 The first place we went was Wal-Mart because who doesn't go to Wal-Mart for glasses, right? We didn't stay there long. That cute face to the left says it all, doesn't it? He thinks he's a hoot.


 Next, we went to Clarkson Eye Care at 55 and Butler Hill.




The people were amazing. I was too busy with the very disgusted child to catch any names but they were awesome! One of the perks of having an obviously autistic child is the complete lack of judgmental looks from fellow customers and the people who work with him work with him instead of making him work with them. Or, that could have just been the lady fitting him... Either way, that's a good place to take your kids if you are close enough.



Option #3
Option #1
Option #2


We're both trying here. He's being so patient. He did throw his toy- in the general direction of a lady, not really at her, take his shoes off- many times, vocal stim- loudly, and try to drop and elope but he's not fighting mad. No blood or tears were shed. He's bored and annoyed and really not liking having so many people touch his face but he put up with it. and then, my husband asked about sports glasses. Maybe sports glasses would be strong enough to withstand his abuse. The woman looks at him, looks at Alex, looks back up and says... I have just the thing.



Miraflex rubber glasses
Rubber. Glasses.
...with a strap!!!
Uh, a different color. Not purple.
 
 
 

Friday, April 19, 2013

Goofy's Parent/Teacher Conference: Help with reading

Going into the parent/teacher conference, I was not a happy mama and I most definitely did not want to be nice and cooperative. I was pissed off and wanted the truth, the whole truth and nothing but the truth and there was no way I was leaving without it.

The teacher started the meeting with what we are looking for in a teacher next year and what exactly his issues were that needed to be addressed. I didn't see much need for this part of the discussion because the principal and the counselor picked out a teacher at the 504 meeting. There was one solitary mention of how he is when he gets his medicine in the morning, that was nixed pretty quickly and I didn't even have to pull out my printed up IDEA Sec. 612(a)(25) (States must have policies and procedures prohibiting schools from requiring a child to obtain prescription medications (specifically “psychotropic medications”) as condition of attending school or receiving services.) paper. Sweet. and they made notes on what I had to say about the bus driver... so we can have him again next year? I hope so :)

And since we've already had the teacher conversation, I want to know what to do about my son not being able to read. I wanted to know what I could do over the summer to help him get as close to the expected reading level as he could. I told them what Google had to say about what he should be reading based on a kindergarten website and the fact that he can't. They were quick to tell me to stay the hell away from Google. Not in those words, of course, but you get the idea. I told them I don't have a choice. I don't know what his sight words are, I don't know what I'm supposed to be doing to help him, the only place I can get information is Google. So, that's who I'm asking and Google said he should be able to read certain sight words and certain sentence combinations and he can't. I told them I didn't go to school for this, I don't know what I'm doing, I just want to know what I can do to help him.

Then the information flood gates opened. He is most definitely behind. but not far enough that it's worrisome.

The first suggestion was summer school. Not even going to happen. no freakin way. Summer school is Monday-Thursday 8-12 and transportation is not provided. That means I would have to get the heathens up, ready and at the school that is not right up the street by 8am to drop him off and then reload a couple of hours later to go get him. With any luck, we'll be sleeping at least half of the summer school day away before the "Good morning, good morning,  good morning, comeonin, comeonin, comeonin, mama, mama, mama..." alarm clock goes off. I'm sorry, not to brag or anything, but you know I told you I got pretty damned lucky with this one. My baby loves his mama enough to sleep. The other one, on the other hand... *fingers crossed* So, summer school's not happening.

I asked them if he needed summer school or if this is something I can work on myself at home. The principal has been the principal for all of my kids so she knows what I'm facing summer mornings and is quick to reassure me that if I work with him for 20 minutes or so a day, he will do fine without summer school so we move on to option #2: DIY, and this is the part you all will be interested in.

Right now, he's a level 1 reader.

Reading:

Story Time: She said to continue with story time and ask the librarian to show me the level 1 and level 2 books.

Continue to read to him 20 minutes/day and have him read the level 1 books.

She said they are working on Dolch sight words, but not only are the words important, usage of short sentences, letter size and word distance apart are important, too. They should look like this (not sure that it will turn out with my template, but we'll give it a try)

I   like   my   dog.




Writing:
Spelling doesn't count, let him write the word as he hears it.

Dry Erase Markers: If I was to let him do "bad" things like write on the furniture or floors, I'm pretty sure he'd be more than willing to practice writing a few words.

Cut up sentences.

Shaving Cream Letters/Words

Worksheets


Websites:

Clarkness.com
Starfall.com
abcya.com
Super Teacher Worksheets
Super Teacher Ideas (not sure which one, they just said Super Teacher)

 

Wednesday, April 17, 2013

What New Coke Taught Me About Blogging... and life.

Back in the 80's Coke and Pepsi were battling for the #1 position. Pepsi was gaining on Coke pretty quickly so Coke made the decision to change their product. If they couldn't beat Pepsi, they would change who they were at the most fundamental level (their product, their formula) and become someone who could be the best.

This backfired on them big time.

People protested the change. They said they had been with Coke for all these years because they loved Coke as it was. They said there was no need to improve on something that was already loved.

Pepsi laughed at Coke and taunted them that they couldn't beat Pepsi so they changed the very thing that made Coke Coke.

Coke, seeing the error of their ways, went back to the traditional formula and rebranded it Coca Cola Classic. As their original, rebranded product, Coke quickly rose back to the top as the Cola Superpower.

Don't change yourself to gain the notice of a few when you already have the loyalty of many. People love you for who you are, not who you pretend to be. You may need to tweak the packaging every now and then, but don't mess with the product.

I hope you like the new design here, feel free to explore and be secure in the knowledge that my "product" will stay the same. A little bit of this, a little bit of that, a little bit of nonsense, a little bit of serious, the ups, the downs and the chaotic mess that is me telling you my stories.

Short and sweet or long winded and rambly, my posts are dictated by my whims and moods, I will continue to be predictable in my unpredictability- ADHD at it's best, both impulsive and persistent(*cough*obsessive*cough*).

I am who I am. Thank you all for being here to share this journey with me and for taking the time to let me know that you enjoy my posts. and thank you to a certain special someone who let me know there were very annoying ads where there shouldn't have been ads ;)

I would love to know what you think of my new space :)
 

Monday, April 15, 2013

Autistic Children Grow Up, Too.

Alex is going to be 11 next month. 11. a preteen. I've been getting these uneasy feelings over the past couple of months or so about things that just don't feel right anymore. These little twinges in the middle of what I'm doing that maybe it's time to stop since my little boy isn't quite so little.


Alex, as much as he will always be my baby, is no longer a baby. I told you before of my struggle with infantilization, this is an extension of that post. The things in that post were not at all infantilization. My friend said, "infantilizing is about treating someone as a child regardless of their maturity, while recognizing that he enjoys the same things that a younger kid would is being respectful to who is and not ignoring his maturity." In that post, I learned to recognize that he enjoys the same things a younger kid and there is nothing at all wrong with that, I'm not babying him by respecting his interests. In this post I am addressing my own concerns of treating him as a child regardless of his maturity. Infantilization is not about who he is, it's about how I see him.


The first time it happened, there wasn't a crack of thunder and a voice booming down from the heavens that he was no longer a small child. It was just a normal day. Our day went along as it always has, I was taking pictures of my sweet babies and quietly realized it felt awkward to think of posting pictures of Alex in his diaper. Not that there is anything wrong with him running around in a diaper... hell, none of these kids are fully dressed for long... but in looking at this perfectly framed moment, it just didn't feel right to share it with the world outside of our home. It felt like an invasion of his privacy. It's ok to post pictures of your infants and young toddlers in a diaper but do you post pictures of a 15-20-30 year old in a diaper? He's not a baby anymore, it's time to throw some clothes on before snapping pictures.


The evening of another ordinary day, it came to my attention that Alex needed to be changed. As I've always done, I plopped him down right where we were, which happened to be the middle of the kitchen floor, and changed him. Mid-change, it hits me that maybe this isn't appropriate anymore. There are males of various ages walking around, carrying on as they always do, not paying any mind to what we're doing because it's a regular occurrence. normal. And I wonder... is he too old to be changed out in the open? He doesn't protest but would Walter? Hell yeah! It's one thing to walk around in your underwear, it's just as unremarkable to change a baby's diaper right there in the floor, but it's quite another thing for an 11 year old child to be stripped down naked with their bodily functions exposed to the entire household. Family is close but not that damned close! It's time to start changing him in his room... or at least an empty room.


Then last night I was cleaning out his closet. Most of his clothes are perfectly fine. Sweat outfits, t-shirts, hoodies, jeans, some fancy shirts... things any kid his age would look "cool" in or at least, acceptable. Actually most of them are hand me downs from the uber-fashionable neighbor boy. As far as this goes, he's just like everyone else. and then I run across 3 sweatshirts. That feeling came back. The "this isn't right" feeling. I can't put these on him. In August, Alex is going into 6th grade. Middle school. Walter was a 6th grader last year and there is no way, no way he would have wore these clothes. "Coolness" may be controversial in the way that some people think we should teach our kids to not care about "cool" but I just cannot look at my middle school aged child and tell them that their feelings are invalid. Whether it should be or not, coolness is a relevant factor here in the sense of how preteens in this area determine the social acceptability of their peers. Even adults judge by appearance. Looking at a person and seeing the way they are dressed, you get an immediate perception of who they are. I don't want Alex to be presumed incompetent and babyish based on the way he dresses.


However, the "coolness" of Alex clothing is not what's at the core of this revelation... Just because Alex is in a Special School where most of his classmates probably wouldn't notice what he wore or care any more than he does, could I put these on him with a clear conscience? If he was mainstreamed and going into 6th grade at the middle school, would I put these clothes on him? Could I put something on him that I feel as a neurotypical child he would strongly object to just because he doesn't have the ability to object?  No.


Because nonverbal or not, intellectually challenged (questionable) or not, he deserves to be treated as an equal. I have to assume that he would react out loud the way any other child his age would. In order to do that, I need to see what other kids his age are doing, what clothing they are interested in, so I asked you. Your overwhelming response was if he likes it, let him wear it. Style depends on the person. I agree. However, I can't say what he likes because he can't tell me so I think it's best to err on the side of caution. I do understand that there are certain kinds of character shirts (not these, trust me, they're ugly) that are "cool" for any age but, really, the shirts are irrelevant.


The shirts are a just very small part of a much larger issue. Always presume competence. Ariane says that to presume competence "...is a way of interacting with another human being who is seen as a true equal and as having the same basic human rights as I have."  When presuming competence as well as recognizing maturity, you can never go wrong in treating everyone with dignity. You can never go wrong when you treat them as if their feelings and desires are no different than those of their neurotypical counterparts... even the ones who can't ask for it.

 

Saturday, April 13, 2013

Reality Check: Alex.

(Busted by Dad. Dog isn't allowed on the bed.)


Alex is Alex.

I say that quite a bit. It's partially a reminder to accept him as is, that he is perfect all on his own, and to not compare him to anyone else because there is no one else like him. I remind myself to compare his progress only to him, where he was before vs where he is today. Sometimes, that's not so easy to do.

Sometimes, I'm reminded he's not as autistically normal as I thought he was.

I don't care about the normal of the neurotypical world, but I was hoping he fit with his autistic peers. I was hoping he was on the same... wavelength as his autistic peers. You know what I mean, like how comforting it is to say my child does this and another parent be all- oh! my child does that too! and you fist bump over your flaptastically autistic children and the solidarity you can find only in the people who are right there with you. I thought Alex was doing so great because he has some semi-useful words and I was so proud/excited that he was interacting with a dog. and yeah, that's great, I should be proud and excited. This is progress. Major progress compared to where he was. It's something to be celebrated! hooting and hollering and dance party celebrated.

(You recognize that this is all about me, right? Sometimes, that's ok. Moms have feelings, too.)

Not so much.

I hear you all tell me about your kids using sign and saying appropriate (or inappropriate) things and doing things with their siblings and all of these awesome things and I assume (I'm ashamed to say) that your kids *must* be higher functioning. They can't be like Alex if they are doing all of these amazing things. So I wonder, where are the kids like Alex?

And, here comes the reality check...

I was having coffee with some friends last night, parents of Alex's peers, the kids like Alex, and as usual I mostly sit back and listen. I love what I'm hearing. I listen to them and I think that is so great, so awesome, their kids are doing some new things and some normal-for-them-things so well! interacting with siblings, initiating interaction with parents, initiating and reciprocating interaction with peers and I am happy for them. Then comes my turn and my big news is that Alex is interacting with a dog.  ...and they're waiting for the big news. and trying to figure out at which point they should be all celebratory over Alex's skills. Which they eventually did. once they got that I was bragging about the dog because he only chooses to interact with me and me alone.

The initial stuttering reaction caught my attention and got me to thinking.

Well, not so much thinking as moping because "thinking" would imply that I can or plan to do something to "fix" it other than what we're already doing. "Thinking" would imply that I'm looking to push him more or to expect greater things from him and I'm not. "Thinking" would imply that I'm looking for ideas on how to fix my abnormal, broken child and I'm not. He's not. I am wondering just how far "behind" he is, how much of it is my fault, and just how blind does a person have to be to not see how far their kid is behind his peers?

It does encourage me to rethink what I see in him, what I expect from him, for him.

I made the decision to not have therapy outside of what he gets at school. I made the decision to use life, our life, as the tool to teach him. I made the decision to allow him to have his childhood for as long as a child should have their childhood. To run and play and just enjoy being a kid. To be messy and dirty and loud and joyous. I still feel that that was the right decision for Alex. He may not be quite as almost-verbal as I thought or be the almost-social-butterfly I saw him as being, he may not be potty trained or the most spectacular self-feeder of the century, he may not be able to dress himself, wash himself or change the channel on his TV but he's still pretty frickin impressive. Even recognizing the need to lower my expectations a bit leaves the boy at pure genius. I don't think I could have, or should have, done anything differently. I don't truly believe that my decisions have held him back. ...or have they?

I don't believe that allowing him to be a child is stagnating him.

He's making progress, he has made significant progress over the years. The boy I look at today has come a hell of a long way from the 3 year old sitting in his highchair, fully engrossed in snacking on carefully chosen goldfish crackers when the heart stopping question, "have you ever considered autism?" was asked. Since that day, he has made massive amounts of progress in many areas. He learns at his own pace, not the pace anyone else sets for him. You know he's crossing mid-line now? That he has become fully left handed instead of using certain hands for certain tasks? He totally gets non-verbal communication. He doesn't run out the front door (when it's closed). He hasn't set my microwave on fire in years. He waits in his seat by the door for the bus to come. He sits in his car seat. He notices what's outside the window as we drive along. He hasn't tried opening the car door as we're driving along...lately. He doesn't hit me or pull my hair. He tells me no. He doesn't run right into other kids. He doesn't try to pick babies up by the hair or step on them. And... Yes, damnit, he's interacting with a dog!

Alex is Alex

He may not be in the same place as his peers. He may not be quite as far along as I thought he was when compared to his peers but that's fine. I am supposed to compare his progress to him, not his peers. There's a cliché and way over used saying that floats around the autism community- "when you've met one child with autism, you've met one child with autism." I hate that saying, I really do but... it's true. and it tells me Alex is normal when compared to Alex. He does fit with his peers. even though he doesn't need to... or maybe because he doesn't need to. This may be a comfort to me but doesn't matter what-so-ever to him. He couldn't care less about fitting in, keeping up, or being normal.

He's happy as he is.

I wonder what he wants, what he feels, what he thinks. I wish so desperately that he could tell me. I want to ask him if he cares that he may or may not have friends, I want him to tell me if he sees his peers as being friends, even though he doesn't make much of an effort to actively notice them. I want to ask him if he's ok with mostly being on the outskirts. I want to ask him if he is happy with his life. but I already know because every day he answers those questions in his own Alex-typical way. He has quiet rocking, considering stares, gentle smiles, sweet hugs, happy dancing, free running, loud/excited stims, uncontrollable laughter, and he has eyes that never lie. He is happy with his life just the way it is.

He is content.

He is excited to see people. He just has to say hi, give them a hug and a smile that is pure sunshine. He has friends. He has people he cares about. He is a people person. He loves to be near people. I can totally understand that. When the kids play in the house, Alex rarely wants to be with them. If he wanted to be with them, he would be with them and sometimes does but mostly he chooses to just be close. When they play outside, they play and Alex wanders around the yard or runs and giggles. Alex doesn't interact with his brothers much because he doesn't want to, that doesn't mean that he doesn't love them. He's not lonely or shut out, he's not trapped in his own world. He sees what happens around him just fine. He just chooses to observe rather than participate. He wants to do his own thing.

He lives his life on his own terms.

He is pretty much forced to be with people in school- which is good, I guess- but at home is the place Alex can be Alex. To do as he pleases, to relax and not feel like he's being forced into some sort of pseudo-neurotypical mold. At home he is free to be ... him. He is loved and accepted as just plain him. In Alex's home, no one tells him who he should be. He lives his life on his terms, the life he wants to live and that, right there, is the greatest comfort of all. It's everything I have always wanted for him so what is there to mope about?

Still the question remains...

am I, as his mother, doing everything he needs? Is his slow progress my failure ...or our success?

Mommy Guilt?

My aunt says it is and that it's normal. I know all about mommy guilt but this... This wouldn't be such a sore subject for me if it weren't for the online community. On my page this quickness to judge another autism parent as uncaring or a failure because they don't do this and this and this doesn't exist. My people are awesome. but as soon as I step off of my own page and into my newsfeed, it's right there and it's so hard to deal with. Which is one reason I rarely comment anywhere but even if you're not the one being attacked, you see what's being said and it sits there in the back of your mind just waiting to jump out and accuse you. Then when you hit those hard spots, the words are there and you're thinking, shit! Is it my fault?

A wise woman...

I talked to my aunt about it. She had a pretty simple response, "B.S." she tells me, "You have mother's guilt, plain & simple...sorry no cure known in existence lol It's the same with every mother....what could (I) have done better...but the reality is you can only do your best & hope God grades on a curve." She said, "Unless it's proven to you, you do what works for HIM."
 

Friday, April 12, 2013

Guest Post: A Poem by Scott Lentine Just a Normal Day

Scott is  a 25 year old man with high-functioning autism (PDD-NOS/Asperger’s) from Billerica, MA. You can find Scott blogging at Scott Lentine.
 
 
Just a Normal Day
Never knowing what to say


Never knowing what to do

Always looking for clues

Just a normal day



Feeling unsure

Totally perplexed with everyday life

Always on edge never certain

I wish I could lift this curtain

Needing to constantly satisfy my need for information

Always online searching for new revelations

Going from site to site

Obtaining new insights every night



Trying to connect with people my age

Attempting to reveal my unique vision

But ending up alone and unengaged

Feeling like my life needs a total revision

Just a normal day


Thursday, April 11, 2013

More Autistic Bloggers...

I shared with you my list of my favorite autistic bloggers and asked you what some of yours are. This is the list you gave me.

***disclaimer: I haven't read all of them, which means I am not familiar with all of them so I, personally, can't recommend these blogs but you all do.

I can say that there are a few people on the list that I am not comfortable reading or sending parents dealing with a new diagnosis to and that not every blog fits every reader, if you've been around the parenting section of the community for any length of time, you will know this to be true. But I also didn't feel comfortable leaving them off of the list because not all of my readers are overly sensitive like I am or new parents just trying to find their footing and there are some people here who do need to hear what they have to say. 

I can tell you that some of the posts you will be reading will be hard to read emotionally and that there will be many times you question yourself in reading these blogs, sometimes you will take things to heart that you do not need to and other times that you hurt because you do need to take them to heart.

Each and every one of these people have a message and whether they are "right" in their delivery is not for me to decide or for me to say. All you can do is try it out, if you don't like it, don't read it. That's what I do.

These bloggers write their reality as autistic people. Someone else's reality is just that- their reality. The things they say are true, even if it is not your reality. Whether they are relevant for you or for your child is up to you to figure out but each and every one of these people have a valid message to share with someone. They have a reality that someone needs to see.

I do not like the line drawn between parenting blogs and self-advocate blogs but whether I think it should be there or not, it is and it needs to be respected. Every person, autistic or allistic, needs to be treated with respect. Especially in their own spaces. When I am in the self-advocate spaces, I don't comment. But, I don't leave comments in parenting spaces either. I listen. I'm an observer more than anything. I watch, listen, observe and apply what I learn to Alex when it fits.

One thing I strongly recommend is for everyone to read Shaping Clay's post Not Every Comment Box is For You before participating anywhere. Ignore that suggestion at your own peril.***


  1. The Third Glance
  2. Lynne Soraya
  3. Julia Bascom
  4. Yes, That Too 
  5. Autistic Hoya
  6. The Caffeinated Autistic
  7. Paula C. Durbin-Westby
  8. Amy Sequenzia is on: Autism Women's Network and Ollibean.
  9. Aspie Rhetor
  10. Radical Neurodivergence Speaking
  11. It's Bridget's Word
  12. Jessica Banks
  13. Textual Fury
  14. Amanda Forest Vivian
  15. Frank Louis Allen

 

Wednesday, April 10, 2013

Alex can talk... but not really.

Eventually, I will get around to telling you about Goofy's parent/teacher conference because I have some really great information for you but today, Alex is the one on my mind.


I told you before that Alex can talk. and he can, he has the ability. sort of. He has vocal stims- many. which means his talking equipment works. He has echolalic phrases- but not many. He has a few single words- but not many. Definitely not enough to hold a conversation but enough to let me know what he wants. sort of. He can tell me good morning and come on in and goodbye and want it and don't want it but he can't really tell me much more than that or any specifics for any of them. He can tell me no and happy and stop. He can greet anyone he knows with a bright and cheery "Hi!" He can name Mom and Dad and Walter. He can identify Mommy and Daddy, Thing1, Thing2, and Goofy. These things tell me Alex can talk.

To me.

I'm focused so much on his potential and what I feel he is capable of in the future- distant or near- that I'm ignoring his own free will and the reality of where he is today. I'm so excited about who he can be that I forget to factor in who he is and what he wants. I forget to consider his comfort. This all came to my attention in his IEP meeting. At the time, the words felt brutal but just as much as I needed his pre-k team to tell me, "you have to consider the possibility that he may never go beyond where he's at." so that I could deal with facts instead of daydreams, I needed to hear the SLP tell me, "I know how badly you want him to talk but..." I missed the next part because those words hit so hard but I think she said that's not where he's at. How badly I want him to talk... what about what he wants? what he needs? What about him?

I was reminded that Alex chooses who he talks to and when he speaks. Whether it's a conscious decision or a part of his neurology, it's his. It's not mine to force. He's known his Daddy since before he was born and still won't talk to him. He's known his Mommy since he was 4 months old and won't talk to her. I could easily blame that on the fact that they haven't been around for the past 4 years, which is why he no longer names them, but his Dad has been a daily fixture in his life for going on 6 years and he still doesn't talk to him- won't even talk to me in front of him. Walter is his favorite person but he doesn't hold conversations (the Alex-type) with him. His Regular Elementary didn't know he had words at all for an entire year.

So, yes, Alex can talk... to me.

 I want my message to him to be that he can be anything he wants to be, he can do anything he wants to do. The message that his potential is limitless, or limited only by what he wants. Not that he should want only what I want.

It's one thing to encourage, to enable, to teach, to provide opportunity. It's quite another thing to force, to push, to demand. Alex will talk... when he's ready.

Until then, Alex is non-verbal. and I have to be ok with that.

Tuesday, April 9, 2013

Easter in the park with Alex

Sunday, we went to a gathering at the park to celebrate Easter with my father's family. It started out as it usually does- a friggin mess. We were invited and we were going but then things worked out to where we couldn't go so we weren't going until my husband woke me up two hours before we were supposed to be there to tell me we were going. Ensuing chaos. You know what it takes to pack these heathens up and to get them following directions to getting ready because you have some of your own... or maybe yours are well behaved but still the same getting ready.

First, I can't just hop out of bed and do what you want me to do because I will probably rip your head off for even suggesting it. I need coffee. alone. The only time I can jump out of bed, down half a cup in one swallow and take off at a dead run is when Alex's bus will be here in 20 minutes. Which is Monday through Friday. not Sunday. By the time I'm done with that, we have 90 minutes.

I have to have a shower because my 2 day old pj's and seriously greasy hair are not something that should ever see the outside world. except bus drivers. because they don't count. I like to believe they don't notice what you wear, if you have make-up on, or if you've brushed your hair this week. They only have eyes for the road. 70 minutes.

Alex's DVD player is broke, which is fine. The boy doesn't need to have his face stuck in a TV-like-device 24/7. Except, have I mentioned bolting? wandering? no sense of danger? or that we're going to a park that has both a pond and a creek? I need to find things that will interest Alex. That's a short list. I packed all of his rubber duckies, teething rings, balls, and a few cars for just in case he might be interested in them today and then slipped the Ace up my sleeve- an entire box of Apple Jacks. 40 minutes.

The Goofy one is not getting dressed because his filthy little self is fine and doesn't need to get dressed because look, he has his dress on! So, fine. whatever.

We're down to 30 minutes and my husband decides he doesn't have enough Salsa for his special dip and must run to the store right up the street and he will be right back. My brother and I packed what we could and then sat around twiddling our thumbs waiting for my husband who should have been back 30 minutes ago. and we are now late.

He finally comes home, we pack the van and decide- once we are already late- that we are taking the grandbaby with us. So, we need to make phone calls and wait around some more.

At an hour late, we finally get the girl and head for the park... I let my husband know that this is why I have to plan everything in advance. My aunt says, "We make plans and God laughs." as if it doesn't matter what I plan because things have a way of going wrong anyway so you should just relax and take it in stride... oh, wait... that's true. Is this woman ever wrong!?

All of the boys had a great time at the park. This year Alex decided he actually liked people. Especially Uncle L, because he could climb in his lap and cuddle. Cousin L, because he didn't get mad when Alex threw his glass at him and splattered sticky orange soda all over him and everything around him. Cousin C, because she thought it was funny as hell. He loved loving on Aunt M, and tried to climb in her lap... he said Aunt S's name before we left (True story! The boy who doesn't even name all of his siblings!). Cousin J gave him the giggles - he thought it was freaking hilarious that Alex squeezed someone else's juice box all over me, while I was trying to prevent that exact thing from happening. He especially loved Uncle A, although I have to wonder how much Uncle A's dog and Uncle A letting him pet the dog had to do with that. And, I loved that Aunt J saw that Alex smiles with his eyes even when he doesn't smile with his lips.







 
 
Everyone waited to follow his lead. They said "Hi" (and by "they", I mean every single person who stopped by our table throughout the day) and waited for him to initiate any sort of touching, made sure he knew he was loved but not the in your face kind. and, I have to brag a little here, they all made eye contact, said "Hi, Alex." and waited patiently for a response and took no offense if he did not to respond. and Alex, well, he was free as the wind... he came and went as he pleased. Sitting when he was ready to sit, running when he was ready to run... as long as he was in arm's reach and mom wasn't paying attention to someone else... and no one got upset in the least little bit over his antics or considered it rude when he bolted to run mid-conversation. They all seemed to really get him as a person, as an autistic person, not just as autistic.

Pretty much... we have been blessed with an awesome family who are aware and are accepting of every single member of this beautiful mess of a family.

and Alex had a great day.

Monday, April 8, 2013

Guest Post: Scott Lentine Can't You See

Today's guest post is a beautiful poem by Scott Lentine.  You can find him blogging on his own site Scott Lentine.

I am Scott Lentine, a 25 year old man with high-functioning autism (PDD-NOS/Asperger’s) from Billerica, MA, outside of Boston and summer resident of Marshfield, MA. I graduated from Merrimack College in 2010 with a Bachelor’s Degree in Religious Studies with a Minor in Biology. I also have written poems in the past year about autism and Marshfield. I love meeting new people, dogs, the beach, hanging out with friends in Boston and elsewhere.



Can’t You See
Can’t you see


I just want to have a friend

Can’t you see

I need the same connections in the end



Can’t you see

I want a good job

Can’t you see

I need to have stability and be part of the general mob



Can’t you see

I want to be independent on my own

Can’t you see

I want to be able to have my own home



Can’t you see

I want the same things as everyone else

Can’t you see

I want to be appreciated for myself

Sunday, April 7, 2013

Autistic Adult Bloggers

I know I said I wasn't doing anything for Autism Awareness Month but I changed my mind. because I can. because I said so.

I would like to start by saying I'm an autism parent. I'm not autistic (are you surprised? yeah, me neither.) but I parent a 10 year old with autism. I have a view point that is necessary to be shared, I have things to tell you that might help you in some way.

I wouldn't go so far as to tell you that I am someone you should listen to or to claim to be some sort of expert because, pfft, come on, have you read my blog? Even my kids don't believe me when I tell them I know what I'm doing. I've figured some things out and I'm figuring other things out and I will be working on even more things in the future and you will hear all about it whether I actually figure it out or just fumble the ball but I want you to know that I haven't gotten to where I am, and I don't think I'd get too far without the help and insight of some very special people... people who's view point needs to be shared, people who have things to tell you that might help you in some way, people who do know what they are talking about... the autistic adults.

They have insights and ideas and experiences that I would never have considered if they hadn't taken the time to talk with me or to blog to explain or to share what they know. I have a list here of 12 autistic adults for you to check out that I follow myself... I strongly suggest you go see what they have to say. Get to know them as people, see how awesome they are and maybe you can learn a thing or two while hanging out with them.


Awesome List of Autistic Adults:
  1. Ancora Impartial
  2. Snagglebox (second ONLY to the dictator Capt'n)
  3. Disability and Representation
  4. The Connor Chronicles
  5. Shaping Clay
  6. Inner Aspie
  7. Tiny Grace Notes
  8. No Guile
  9. A Quiet Week in the House
  10. Stuart Duncan
  11. Stimeyland
  12. Life on the Other Side of the Wall


Who are some of your favorite Autistic Bloggers?

Friday, April 5, 2013

Alex's IEP Meeting

I must say that this was the best IEP meeting I have ever participated in, with participated being the key word. Every single person on the Team, with the exception of the ABA consultant and Musical Therapist (because I don't have their e-mail addresses to harass them), worked with me to make sure we were on the same page. They went above and beyond to include me and to do everything they could do to make it easier for me to be an active part of the Team.

The Teacher

A few days before the IEP meeting, Alex's teacher e-mailed me to personally invite me to a parent/teacher conference the night before the IEP meeting. Now, we've been talking about the IEP meeting for months because one of us is a neurotic control freak who has to know everything about every single thing way before it happens so plans can be made. with plans for those plans and lists of plans, and lists of those lists etc. because she turns into a psychotic harpy and flies off the handle, flipping the f*ck out over the unexpected. Not naming names but if you've followed my blog for any length of time... you know.

So, parent/teacher conference. Some interesting things came up at this conference such as Daddy's sudden desire to take his son out of my house on a regular basis... which is totally going to happen when he pries the kid out of my cold, dead hands and is an entirely separate blog post... and that Alex's behaviors seem to be following a pattern. The beginning of the year, the boy is something else but by the time he comes back from Christmas break he calms down quite a bit. Even his biting has decreased. Yes, BITING! My boy bites!? Since when!? Who is he biting!? I demand evidence! Show me proof! By "biting", could you mean "kissing"? Because kissing is fairly new and open mouthed. She says it could be "kissing" because he's "biting" the people he really likes. Such as his two aides. *name* and *name*. who are not in any way New Aide. Remember the one from the beginning of the year? The one I lost my mind about because the summer school aide was supposed to be the whole year aide and I didn't find out he wasn't until I met the New Aide at Open House? Yeah, she's not there anymore. The teacher can't believe no one told me and she is so sorry that I had to find out this way. But... I still want to know who in the hell he's kissing! WTF's up with that!? I have to beg and plead and pin his ass down to get mine!

But as much as it annoys me that no one told me she wasn't there anymore, I'm actually ok with it because the teacher is there. Alex knows the teacher, the teacher knows Alex. Alex seems to like the teacher, the teacher likes Alex. That's all I really need is one person there who knows him and he is comfortable with. Someone I can be comfortable sending my son to spend the day with. The teacher is really pretty amazing which makes me feel bad for the hell I put her through this year. Not that I don't have a right to worry. or that I shouldn't feel the need to vet the people who spend time with my most precious treasure. but I could have been a little nicer about it. Maybe next time. (doubtful, but almost possible) This meeting, the ability to sit for a few minutes and just talk, put a lot of my fears and worries to rest. This meeting, sitting and chatting with no pressure to do anything else or to be anywhere else, finally made me completely comfortable that Alex is in competent and caring hands.

The Social Worker

Through the support group at school, I met a woman, Alex's social worker. With meeting her there and feeling comfortable in a confidential environment, I opened up about my worries and my ADHD as related to the meeting. I told them about it being hard for me to keep up, understanding what is said, missing chunks of the discussion, and not remembering afterward what is said. Here in an anonymous blog, it's easy to talk about my issues and the trouble it causes in my ability to function as any normal adult should but in real life, it's embarrassing. I feel like I am lacking and that I fail my kids when they need me most. At *cough* years old, I should be able to follow a conversation, I should be able to answer questions without zigzagging from A-10 and back again, I shouldn't have to rely on lists, charts, and written words just to understand what is going on. Instead, I'm the one who's more like, "um....what? what do you mean? can you repeat that? wait. what did I miss? Uh, what were we talking about? I didn't hear what you just said." Yeah, that's not stuff I advertise in real life because weakness is usually exploited or at the least looked down on.

But she did. She met with the team and told them about my trouble. She worked with me to find out what I want, she worked with them to make a plan to help me. I read. a lot. because I can understand and remember what I read in a way that I can't remember what was said 5 minutes ago. I can remember a blog post I read several months ago and when you have a question that the blog post or article answers, I can tell you exactly where to find it- that is one of the reasons I'm good at what I do. The social worker and the teacher know I'm a blogger and I relate to the written word so they came up with the idea to project the IEP onto the white board so that I could read along as we talked.

The social worker went to the meeting with me, she made sure I knew I had someone on my side. She made sure I kept up, that I understood, that everything was explained, and that we were all on the same page. She made sure I had support, that I wasn't alone, and most important, she made sure that Alex had an adequate advocate. I am more thankful for that than I can even express.

The Perfect Meeting

At 10am March 29th, I walked with the Assistant Principal down the front hall to the IEP room. It's the same room we have our support group meetings in so it's comfortable, familiar. I go to take my seat as far from everyone and as hidden as possible... and am redirected to the other side where we can all see the white board. I'm looking at the seat right in the center of the other side of the table, surrounded by team mates and I am filled with dread. My mind flashes to the woman in support group who is frequently glancing at my hands, distracted by the fiddling, to Goofy's teacher demonstrating for my husband exactly how she knew I was a nervous wreck at our first meeting and his embarrassed downcast look in response, the psychologist's office when I was too upset and focused on explaining to him exactly why he was wrong to pay attention to what my hands were doing and my husband's teasing afterward... but there's nothing I can do about it. I take my seat between the counselor and the assistant principal.

We do introductions and start going line by line reading the IEP projected on the wall. The assistant principal wants to know what my concerns are. my concerns? ...blank. They're looking to me for an answer and... "Um..." I DON'T KNOW! I focused on strengths! I made a list! (...and then gave it to the teacher last night so the social worker would have a copy.) what were my concerns? I know I had to have some. What were they? Shit. I should have kept a copy of that list. concerns. concerns. think, woman! concerns. GOALS! Concerns are goals! I made a list. what was on the list? 5 things. 6? 5. picture bold type... oh, God, woman! Just think! "Transitions. Self Care. Bilateral Skills. Staff Change." How many's that? what were my ideas!? "...I don't know. I gave the list to the teacher last night." They stopped the meeting right there and went to get the list. Thank God. That was dumb. I should have known better than to leave my only copy.

Once we had the list, the meeting went smoothly. Every single thing on my list was included in the IEP in one place or another in combination with their own things. We went person by person, line by line, goal by goal. They did not move on until we had discussed every question, every concern, every idea. We weighed my points vs their points and came to an agreement on every letter of the document. The IEP meeting ended up taking 2 hours but since I could read along and they made sure we stayed on topic as much as possible, I know everything that happened. I know what is in his IEP and why. I am confident that this IEP is perfectly tailored to Alex. I did miss a few chunks but it only amounted to a few sentences and for a 2 hour meeting, that is amazing.

Leaving this meeting, and even a week later after getting my copy of the IEP and reading through it on my own, I am certain that this the perfect IEP, that this is the school for Alex, these are the people I want working with him. This may or may not be the year that everything just clicks for him but I know this school will be the difference. This school will be exactly what he needs to finally just ... get it. I just know that this is the team that will help him get to the moment where everything falls right into place for him. They will help him be everything he wants to be, no matter what that is.