If They Only Knew What I Was Thinking

As parents to children with special needs, we’re graced with many, many opportunities to kindly and compassionately educate others about our children. We endeavor to dispel myths, preach inclusion, and promote equality and acceptance.  It’s not always easy to be so kind, especially when we read extremely ugly comments to posts online, or hear others speaking crassly about autism or other special needs.

Sometimes we just want to let the snark fly.

So I did. Here. Following are some of the things I only wish I could say sometimes. I’ve chosen to write responses to some of the most common questions we hear or read. Just to be clear, these are things I think in my head, not things I actually say. (I feel like I have to make that abundantly clear, so no one gets their panties in a bunch.)

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“Why should our kids have to go to school with all these ‘challenged’ kids?  Why shouldn’t kids with special needs go to their own school?”

It’s important that your children are prepared for the real world by being exposed to different kinds of people.  When they are adults, no one will be there to shelter them from all the “different” people they will come in contact with, and we don’t want it to be a shock to their system when that happens.

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“Why should our tax dollars be used to support kids with special needs?  They use up money that schools could be using for materials, teacher salaries, and extracurriculars.”

Everyone knows that teachers are in it for the love of teaching*, not the money.  It would almost be insulting to offer them MORE money, just for doing what they love.  Besides, most of those special needs kids get denied for services they really need, so we’re not spending THAT much extra on them.  I’ve also got enough cookie dough in my freezer from the PTA fundraiser to fund a sports team for an entire season.

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“What if our children pick up bad habits from the special needs kids, who have unusual or severe behavior problems?”

Many behaviors occur because of teasing, bullying, or not being included by their peers.  Your children should be safe as long as they continue to ignore the special needs children, as though they’re not really there.  If one of them does have a behavior in front of your children, they should move as far away as possible and stare at the special needs child, whispering to their friends about him or her, and basking in the warm glow of satisfaction, knowing they aren’t as weird as that kid.  Because being a friend to a child with specials needs is just unimaginable, right?

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“These kids take up more of the teacher’s time in the classroom, so the rest of the kids suffer because they’re being held back.”

It’s true that children with special needs often need more one-on-one time, keeping the typical kids from mastering the content in record time, forging through the grade-level work by mid-year, and resulting in them not being the next Doogie Howser.  That’s the reason we don’t ever see 14-year-old doctors in clinics and hospitals, and it’s a damn dirty shame.  On the plus side, it saves parents from having to pick up their doctor-child at the end of their midnight shift.

Sorry folks, urban myth. Your little precious isn’t the child prodigy you think they are.

I don’t know about you, but that felt good. Now that I’ve let the snark poison out of my system, I can go back to kindly and patiently educating these stupid fuckers misinformed parents. I try to equate educating the masses with the formation of the Grand Canyon. Time and pressure. If time and pressure can carve out something so massive and breathtaking, then there’s hope for autism awareness and education.

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*Teachers TOTALLY deserve more money, they work hard.

The Truth About Special Education in Texas, Y’all

We’ve all seen the lists of things that other parents or family members shouldn’t say to an autism parent.  In light of the fact that I’ve had four IEP meetings this year, I thought I’d put together a list of things that school personnel shouldn’t say to an autism parent, based on my experience this year.

I’ve culled these little pearls from prior IEP meetings.  The most recent meeting this week was when we finally reached agreement on all of the issues.  Although they emphatically will not put into writing that his recess time is protected (because the “district will no allow it”), we’ve managed to add a number of behaviors to the BIP to prevent any interruption to recess.

1.  “We use positive behavior support, unless we think it’s a ‘typical’ behavior, then we will punish.”

Listen up.  If you are autistic, then all of your behavior comes from being autistic.  You can’t separate the person from the autism.  Everything the child says or does is through the lens of autism.  EVERYTHING.  Making this kind of statement tells me that you do not have a firm grasp on what autism is, or what it means to have a disability.

2.  “We’re trying to help him to be more like the other children.”

You just told Connor and me that he is not good enough or valued as he is.  You’re saying that he needs to “blend” in order to be valued.  It’s extremely insulting, as well as being detrimental to his self-esteem. 

3.  “We want to discourage him from wearing the noise-reducing ear muffs during assemblies, because in the real world it would be odd to walk around wearing them.”  (this was said in kindergarten)

Bitch, please.  If my child needs those ear muffs during assemblies because the noise is too much for him, then he WILL wear them.  You will not dictate what accommodations he needs.  Nor will you burden him with your “real world” concerns, especially when he’s just in kindergarten.  His ear muffs are no different than a cane or wheelchair.  Shame on you, for making your own prejudice painfully obvious.

4.  “He isn’t eligible for ESY because he has not demonstrated a regression in skills that can’t be recovered in six weeks.”

No, that is not the only criteria for ESY.  Although each state has their own rules and legal criteria, the following excerpt is from IDEA regs:

S. 300.106 Extended school year services.

(a) general

(1) Each public agency must ensure that extended school year are available as necessary to provide FAPE, consistent with paragraph (a)(2) of this section.

(2) Extended school year services must be provided only if a child’s IEP team determines, on an individual basis, in accordance with S300.320 through 300.324, that the services are necessary for the provision of FAPE to the child.

(3) In implementing the requirements of this section, a public agency may not –

i. Limit extended school year services to particular categories of disability; or

ii. Unilaterally limit the type, amount or duration of those services.

Do your research, and consult an advocate, if necessary, if you feel your child needs ESY and you are being denied, like we were.  We will be getting ESY this summer.

5.  “He knows what the rules are, he just chooses not to follow them sometimes.”

Yes, it’s called ‘autism’!  See, knowing what the rules are if asked and not being able to control your impulses are things that work in opposition to each other.  It’s not a purposeful, willful choice, it’s a lack of impulse control.  It will take him much longer to develop that impulse control.  Why not set up something he can earn for following that particular rule?

Lest anyone think they can sully my good name by insinuating that I’m not being truthful, or may be exaggerating,  I’m attaching a picture of part of a page of the IEP – the declarations page, which summarizes the conversation that took place during the meeting.

And this, my friends, is what special education looks like in Texas.  At least, in the Pflugerville ISD.  Texas falls at the bottom of the country for special education funding.  More than that, it lags behind in terms of disability understanding and awareness.  While many states forge ahead with respecting autism and other disabilities, and teaching to the student’s strengths, Texas still lives in a world where it’s considered appropriate for staff to say that the student needs to fit in and be like the other students.  THE STUDENT WITH THE DISABILITY MUST FORCE THEMSELVES TO BE LIKE THE OTHER CHILDREN, THE CHILDREN THAT DON’T HAVE SPECIAL NEEDS AND CHALLENGES.

Fuck you, Texas.

Systems don’t change overnight, so we soldier on.  The thing that helped drive us toward agreement was the fact that I employed a very tough advocate.  Although it was costly, it was well worth it.

And THIS is why I blog.

Pigs In a Blanket and Time Management

Double the time needed to complete a task for children with ADHD.  Every book I’ve read on the subject makes this assertion.  And they’re right.  If the average child can get their shoes and socks on in 5 minutes, mine takes 10 minutes.

And that’s with me, shouting from the other room, “hurry, get your shoes and socks on, we’re going to be laaaaaate!!!”

And the boy, shouting back “I AM getting my shoes and socks on, why are you always rushing me??  I’m going as fast as I can!!!!”

Fine.  You’re going as fast as you can, says you.  Like earlier, when it took you 23 minutes to eat a bowl of Cheerios….while staring slack-jawed at the Backyardigans, singing and dancing as pirates.

This has been pretty much the routine each morning as we rush out the door for school and work.  This year, Connor has asked for the coveted pull up and drop off, rather than the park-the-car-and-get-walked-in-by-your-mom routine.  I’m fine with that, and want him to feel like a big boy, so each morning at about 7:30 am, I pull into the drop-off lane and send him on his way.  Class starts at 7:40 am, so it’s just the right amount of time to go to his resource room first.  It gives us an extra 5 minutes of getting ready time in the morning, since I don’t have to worry about parking.

Then, a couple of days ago, a statement of account came home.

What could this be??  Why, it is a statement of the balance on his lunch money account, and it says there is a negative balance of -$6.00.  Hmmmmm, I know I still had about $5 on it, and he has taken his lunch every day this school year.  Last night I logged onto the lunch money account, and found an activity report.  Here’s what it says:

Student Meal History

Date	Student Name	School	Meal	Items Purchased	Price
9/27/2011	Connor	Neighborhood Primary	Breakfast	BFAST 3	$1.75
9/28/2011	Connor	Neighborhood Primary	Breakfast	BFAST 2	$1.75
9/30/2011	Connor	Neighborhood Primary	Breakfast	BFAST 2	$1.75
10/3/2011	Connor	Neighborhood Primary	Breakfast	BFAST 1	$1.75

It appears that someone has been double-dipping on breakfast.  But beyond that, it confirms that little man is more capable than he appears when it comes to time management.  He is managing to go to the cafeteria, charge a breakfast to his account, and sit down and wolf it down in 10 minutes.

So busted.

BUSTED, BUSTED, BUS-TED!!!!!

We had a little chat this morning, he and I, while he ate his oatmeal (making sure he’s got something substantial in his gut!).  In his defense, he didn’t really seem to think there was anything wrong in what he’d done and, to be honest, I’m pretty sure I never clearly said, “do not go to school and buy another breakfast since you are eating this at home.”  It just never occurred to me that I needed to cover that base.

Frankly, it would save me a lot of hassle in the morning to just let him eat breakfast at school but, unfortunately, the school serves up a big load of crap in the cafeteria.  Here is a sample of their breakfast menu:

Monday:  Breakfast pizza and graham crackers

Tuesday:  Turkey pancake wrap with syrup

Wednesday:  Pancakes with syrup or oatmeal

Thursday:  Egg biscuit with cheese or blueberry muffin

Friday:  Chicken biscuit sandwich or oatmeal

As you can see, it is a veritable cruise ship smorgasbord there at the primary school.  No fruit, yogurt, or cereal.  I suppose they expect a 6-year-old to have the self-restraint to choose oatmeal over pancakes, but mine has not developed that level of discipline yet.

Nor have I.  I would pick the pancakes too, hands down.

But it does show that when a child with challenges is HIGHLY motivated, he or she can do amazing things.

And if one more flyer comes home from the school about physical fitness, and promoting healthy habits for my kid, I am going to be HIGHLY motivated to start a picket line at the district office.  Offer my kid a big load of crap to eat, then put the onus of health and fitness on the parents??  This little piggy in a blanket goes WEE-WEE-WEE all the way to the school board.

For now, I need to figure out how to get this newly acquired time management skill transferred to the home environment, without using food bribes.  Oh, and thanks to the school, now I have to explain why they don’t serve healthy food, even though it’s important to eat it.

B.I.P, Easy As 1-2-3

We had Connor’s IEP a couple of weeks ago.  It’s taken me a while to digest it and decide what I think about it. 

I requested this IEP.  Yep, as much as I hate these meetings, I demanded this one.  For months I’ve been asking for them to include a behavior intervention plan (BIP) in his IEP, and I finally got them to do the functional behavior analysis (FBA), the precursor to the BIP, and get it implemented.

With the meeting, I went way out on a limb and became the super pushy parent.  It’s an uncomfortable role for me, because I have a tendency to want to be liked.  And I want my son to be liked, and to have people really want to help him.  But I was determined that he needed a 1:1 shadow during recess, which is when he has the most social problems, and I wasn’t going to get it by being Sally Suck-Up.  Connor doesn’t apply skills that he’s heard in a social story, or been reminded of verbally.  He needs to learn them in the teachable moment.  Makes sense, right?

When a child on the spectrum has an obvious deficit in social skills, and has at least three incidents a week of hitting, why would there not be a behavior plan?  I mean, it boggles the mind because it is the opposite of common sense, right?

So we got it.  And that’s a good thing, even though it took until nearly the end of the year.

But there’s more.  According to the FBA, his primary motivations are escape and attention.  To a lesser degree, tangibles.  So here’s where I’m confused.  They’ve started doing this “social mapping” thing with him, where they sit him down with a paper with all these happy, sad, and angry faces.  They talk about whatever he did, how it made the kid feel, how it made the teacher feel, yadda yadda.

Doesn’t that give attention to the incident, which is one of his motivators?  Shouldn’t they refrain from doing that, until maybe the next day?  AND, consequences so far have been missing PE and missing some other activity.  Isn’t escape the other motivator?  So aren’t they feeding into both of those things that he is trying to achieve?

And guess what?  I emailed this question to the district autism coordinator, who did the FBA and wrote the BIP, and she never responded to me.  Just totally blew me off.

And that made me feel…

Don’t get me wrong.  There should be some kind of consequence for his actions.  But it seems like he’s getting exactly what he wants with all the attention he gets for doing these things.

But since I’m just a…

I guess I’ll just give it some time and see if it produces any results.

Politics in the Produce Section

 

Usually going to the grocery store on a Sunday, after 11am is a huge mistake.  If I go early on Sunday it’s a breeze, because it’s just me and the other heathens.  But I was lazy this weekend, and got a late start. 

Let ye all go forth and descend upon the grocery store like locusts upon a field.

Note:  For this post, my “inner” dialog will be written in parentheses.

While perusing the first strawberries of the season, I heard someone call my name.  I looked over, and saw the district autism coordinator (oh geez, summon a big fake smile, quick).  I’ve had mixed feelings and experiences with her (god, she doesn’t have any makeup on and looks like hell), so I wasn’t sure how I felt about the random encounter (AND she’s wearing sweatpants.  I have makeup on and jeans.  Awesome, I have the upper hand in terms of presentability.)

We talked for a minute about the budget issues.  The school district is bracing to receive 20 million less in funding this year, and many positions are on the possible chopping block, including hers.  She said she’s stressed because she has a son in college (lucky for her she doesn’t have a kid with autism to worry about), but she’s thinking of starting a daycare if her position gets cut (I wouldn’t let her dog-sit for me).

Because I’m selfish and single-minded, I steered the conversation toward the behavior intervention plan they were working on creating for Connor, at my insistence (because they’re slackers and shouldn’t need me insisting to have the obvious).  She says they’re working on “data tracking.”  So I told her that my original question was can an aide or someone spend a week shadowing Connor at recess, and helping with social skills on the playground, because that’s when he has a difficult time.  How hard is it to understand that a kid on the spectrum needs help and coaching to learn how to play with the other kids? 

“I’m sure we can find a way to make that happen.”  (standard bullshit answer)  So I reminded her that my initial question about a shadow was never answered in the onslaught of back-and-forth email between me, regular teacher, sped teacher, and her.  I was told about the social stories they read him (great, but forgotten by recess) and about his “motor time” (still useless at recess).  But no one could ever give me an answer about a shadow at recess to help with social skills. 

Oh yes, she assures me she will look into that (lying sack of shit).  And I remind her that it shouldn’t take me ten emails back and forth about something like this (and if they thought they would wear me down, they were sorely mistaken, because I will take it to the ends of the earth just to prove a point, because I’m that much of a bitch).  It should be common sense that a child with autism needs some help with social skills on the playground. 

I did not, however, tell her that I was completely aware that they were all using stall tactics to try and stretch this out to the end of the year (goddamn them to hell).  I also did not mention that I called the principal to request the behavior intervention plan to force them to include social skills training into his IEP (how can I make these people care half as much as I do about my kid’s success in school?). 

I’m not sure if our encounter will produce any results, but I thought it was fortuitous timing to run into her (why was her hair so freakishly dry??  She needs a deep conditioner…).    Maybe it was an unfair advantage to run into her and push my agenda, but autism isn’t fair, school districts aren’t fair, life isn’t fair.  And damn it, I have a job to do.

My Happy Place is a Gas Station Car Wash

Saturday was the first day that sick boy felt better, and started acting like himself, meaning he was rambunctious, lippy, and super-active.  He was up most of Saturday night too, and probably only slept 4-5 hours.

So it was a surprise that, on Sunday, he was calm, focused, and well-behaved.  It’s a good thing too, because now hubby is sick and was in bed all weekend.  Late in the afternoon I announced that I was going to the gas station to fill up, and get a car wash.

“Can I come with you, Mommy?”  Little man had decided it was a dandy day to wear his superman costume, but I decided it wasn’t any worse than the occasional Texas attire that I see, which consists of John Deere shirt, cowboy hat, cowboy boots, and way-too-tight Wranglers.  He straightened his cape, grabbed Cowboy Woody (of course he did, it’s fucking Texas isn’t it?) and off we went.

Once the car was filled up, we went inside the store so I could get 44-ounces of liquid crack, and I let Superman pick out one candy item.  As always, he chose the mini M&Ms in the little tube, that sound like candy-coated maracas when you shake it. 

Back in the car, and driving into the car wash.  “Mommy, would you like a candy?”  I had to look back over my shoulder to make sure I had the right boy in the backseat, and complimented him on his sharing skills.  He actually gave me 6 M&Ms, which was pretty generous.

And then we sat in the car wash in complete silence, eating our M&Ms….me and Superman, and Cowboy Woody.  Maybe I have a smidgen of Asperger’s too, because I’ve always found the car wash to be an oddly soothing place.  Or maybe the boy picked up that trait from me.  Either way, it was the most peaceful, tranquil, relaxing 3 minutes of the last week. 

Maybe I’ve stumbled upon a new kind of therapy….

Not my car, but even just looking at the picture makes me feel all warm and fuzzy.

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Yesterday Drew began working with Connor on his tone of speech.  We are supposed to ignore Connor when he yells or whines, and respond to him when he uses an appropriate voice.  This is much harder than one would think, because I never realized that he whines SO MUCH.

And then I started thinking, “do I whine?”  I decided I would make a conscious effort to speak in a tone that is devoid of emotion hence, no whining, no sarcasm, no ironic observations.  This is killing me, and I find that if I’m not busy pointing out life’s little absurdities, tinged with a soft hue of sarcasm, then I have very little to say.

Now when I speak, I sound like a robot.

I’m dating myself, but I keep thinking back to that robot from the old TV show, Lost in Space.

Instead of the robot voice saying “Danger Will Robinson,” imagine it saying, “Good morning, what would you like for breakfast?”  Or, “Wow, that is an interesting purple velvet pantsuit you have chosen for your attire today” (said to a coworker with an interesting flair for fashion).

It’s just weird.  But since we want Connor to learn what “appropriate” speech sounds like, I guess I should actually model that kind of speech.  If Connor would just learn to be sarcastic and witty, instead of whiney, this would not be a problem.  The sacrifices we make as mothers……

During one of the “trials” yesterday, Connor ended up so mad that he was lying on the floor, crying and yelling, because he was being ignored.  If I have to keep this up much longer, I think I will join him on the floor.

Let's use a grownup voice.

Holiday Stress, YMCA and Pflugerville ISD

With Connor in kindergarten this year, it was our first time seeing the effects of school combined with holiday stress.  The last week and a half before the holiday break was a real challenge.  We saw our normally happy child exhibit a big spike in aggression and anxiety. 

A couple of incidents at school involving hitting, and I was emailing the teacher, special ed teacher, district autism specialist, and our behaviorist.  Simple common sense tells me that when a child is anxious, and exhibiting a loss of control as a result, then they need some extra supports to help them with coping strategies.  Initially, the teachers did not agree, and chalked it up to holiday angst, recommended that any changes right now would not be a good idea, and informed me they would monitor after the holidays.

Huh?  I don’t think so.

Our behaviorist, on the other hand, completely agreed, and sent a list of interventions to try until the holiday break.  They were simple tools, aimed at helping Connor get out extra energy, and providing a little more structure at recess time, when he was having challenges. 

In an amazing about-face, the teachers and autism specialist “agreed”, and the rest of the week went by without further incident.  In my ongoing commitment to being diplomatic, I humbly thanked them for their enthusiasm at helping Connor through the rest of the week.  It was great that they saw the value of our behaviorist’s recommendations, and I can only hope that in the future they also see the value of parents recommendations, namely, mine.  I’m told by others that my experience is an unfortunately common one.  On a positive note, we have all established my reluctance to be dismissed, and my commitment to a team approach.  Yay team!!!!

And then there’s the YMCA…..

Of course the challenges carried over there as well.  I asked every day if they were using the “happy face” chart and prize box.  Ummmm, no.  Alrighty then, I’m afraid I cannot address your concerns unless you are using the abundant tools that I have provided. 

Next day, better.  They used the chart.  “So you used the tools, and the behavior was better?  So I guess you guys have a handle on things now, and I won’t need to provide any more reminders about using the tools, right?”

It ain’t easy being an advocate.  The hardest part is living in a state that is so very far behind in services for the disabled population.  There are not adequate programs, people have had very little training, it’s still like a foreign concept here.  So I provide tools, I advocate, I teach, and I remind.  I remind them constantly that my son is not going away.  And worse, I am not going away.  Not following through is not an option, because I will be there again and again, asking questions and holding people accountable.  Good grief, these children are your neighbors, your friends, your relatives.  You will not pretend they don’t exist, and you will not just dismiss them when they don’t fit inside your box.

And now we are in the middle of holiday break, and it is going so nicely.  My child is happy, bubbly, and pleasant.  He spent 45 minutes at the McDonald’s playscape, making friends, playing nicely, having good manners, and being a pure joy.  That’s the best Christmas gift I could have received.

Boy Scouts Belong to Other Families

Good deeds done here!

Twice in the last week I’ve been asked about the Boy Scouts of America.  People want to know if I will be signing my son up in the next year or two, to spend time with other boys, camping, fishing, doing good deeds, and enjoying the camaraderie of boyhood.  And they are surprised when my answer is not just no, but hell no.

Surprisingly, many people are not aware that the Boy Scouts have historically discriminated against atheists and gays. I could cite a slew of references here, but it would go on for pages.  A simple google search for “boy scouts discriminate” will give you over 825,000 results, many are as recent as the last few weeks.  There have been many incidents of atheists not being allowed to enroll, or being dismissed from the Scouts, and the same goes for homosexuals. It’s not just reserved for the scouts themselves, but also the troop leaders.  Gay troop leaders have been dismissed as well (a gay father was dismissed in October, right here in Texas).

My husband and I spend a lot of time advocating for our son.  As recently as today, we still battle the YMCA to work harder to be inclusive of children with disabilities.  We fully support inclusion in school classrooms, to the extent possible.  So here is our quandary:  how could we possibly fight for inclusion for our son, while enrolling him in a group that is not inclusive?

We can’t, and we won’t.  One friend even suggested to me that we lie about being atheists.  Now that’s just funny.  Why would I lie so our son can infiltrate a group that doesn’t want our kind, or other kinds, to join in the first place?  Sounds ludicrous, doesn’t it?  My friend couldn’t understand how I could deny my son the option to join the group, if he was interested.  Regardless of our belief, or non-belief, why would I want to allow my son to join a group that excludes others?  A group that is meant to support and represent the community, denies valued members of their community based on their divisive criteria.  For me, it’s a no-brainer. Even if I was, gasp, religious, I would still reject them.

So take that, Boy Scouts, I reject YOU!

We will never stop advocating for our son, and for integration and inclusion in general.  And if the subject of the Boy Scouts ever arises,  we will calmly explain it to my son.  I’m pretty sure he won’t be interested in joining a group that would not allow his daddy to be a troop leader.

Milestones

After all the changes, and the meeting, and changing my work times, things have been sailing along much more smoothly at Connor’s after school program.  He has a new counselor that worked with him at their summer camp, and she is really great with him.  The past two weeks have been rather pleasant (I’m almost sorry I just put that in writing).

On Friday when I picked up Connor, his counselor asked me if I would always be picking him up that early.  She said she’d like him to stay later, since he’s been doing so well.  She’d like to see how he does when he’s there for more than an hour.  WHAT??!!  That is a first!  Never in his five years has someone asked for him to stay longer.  I was just so flabbergasted, I didn’t know what to say.  Then I remembered that they have an early release day coming up this week, and a teacher day off in October.

I reminded her of those, and we decided to see how things go on those days.  Let’s not get all crazy and start thinking he can just hang out for hours on end, being good, for heaven’s sake!

Things have also gone well in his kindergarten class, with only two days of naughty reports.  Two days out of four weeks is not too shabby.  I’ll take it!

I can honestly say, my heart swells with pride.  Maybe he is finally maturing and understanding how to conduct himself.  He even went to his counselor to ask for help with a conflict, rather than hitting or pushing.  He got a trip to the treasure box for that.

Here’s crossing my fingers and hoping things continue this way.  All our hard work is paying off, painfully slowly, but still getting there.