Here We Go Again - The IEP Carousel

Interesting day, today...  I started out with a meeting regarding son 6 and his IEP.  For the uninitiated, IEP is Individualized Education Plan (which, by it's very definition, should be, you know...individual.).  

I realize that the school and our special education co-op would like very much to have son 6 participate in social skills group.  My issue is not whether or not there is benefit, but rather whether it fits the "A" in FAPE (Free, Appropriate, Public, Education) to which every child is entitled.  Yes, he may have some issues socially, in fact, he DOES have some issues socially.  However, in recognizing that, we must also say that he has made progress insofar as he is no longer hitting fellow students to get them to move, but is rather politely requesting that they move, counting to four, and THEN hitting them.  LOL, I know.  But the goal I hold for each of my kids is that they make progress, not that they get perfect.  "Progress, Not Perfection" is our mantra.  If he has made progress, and continues to make progress, then I'm not really sure why the social skills group is necessary. It adds another step he doesn't need to contend with - generalization.  If his interactions are successfully facilitated, he won't have to generalize to another environment - he's learned in the environment where he needs the skill!

We're back to the place we left off last spring... "Mom, do I have to go to school? I hate, despise, loathe, and abominate school!"  "It wouldn't be so bad if they allowed a little autonomy, and let me do my work my way, but I don't even have any friends to help me.  Why?  Mom, I'm the weird kid, remember?"  My heart bleeds. Why, oh why can't we get the point?  NORMALIZATION.  Teacher, accept him.  Para, support him.  Kids will follow suit.  More is caught than taught, and if you make him stand out, he will be the one left out.  Help him grow, give him his tools... trust him - he knows when he needs his bear, and when he needs his mirror, and when to listen to the CD and breathe like Darth Vader. TRUST HIM.  Let him be himself - you might even like him. 

No Matter Where You Go, There You Are

The picture is the campus of son2's university.  Beautiful, isn't it? 

Well, son 2 started college yesterday.  Sort of.  Let me elucidate.

Son 2 has a pattern of being late for everything.  Literally, everything.  His social anxiety peaks and he can't make himself go in the ___(classroom, party, house, garage, store, church, choir room, place there might be a person).  I love this boy to death, but he just can't make himself. 

SO. First day of class.  We arrive at the appropriate location with 15 minutes for him to get to class.  He found the classroom just fine, no problems navigating, even with the sidewalks teeming with students.  I went off to pick corn for my mother and father in-law for that hour, thinking he would be great, it's just syllabus day, nothing major to do...he'll have lunch with his best friend from high school and they'll have a few laughs. 

Fast forward exactly 46 minutes.  I get a text saying class is out early because it was just syllabus day.  I asked about his friend, I asked what's on the syllabus, does he like the teacher etc.  I got platitudes and excuses.  He lied to me.  He did not walk through the door.  He stood outside it for 46 minutes, then texted to come home. 

AAAAARRRRGGGGHHHH!!!!!

We need help for him.  I could walk him into class, but that's hardly the societal norm.  When school starts for the rest of the guys, that will also get easier.  Trooping in with four little brothers would really draw the attention, and probably help him avoid ever wanting to go in again.  But what are my options?  I have nothing to pay anyone with to help him get through the door, and the high school hasn't managed to get his IEP in to the college yet, so Student Support Services is really limited in what they can do. 

I want him to hang out with his friend, and get some of the fun parts of college and not just the grim work.  I want him to enjoy this experience, but he appears bound and determined to let this one beat him.  I can't find the instructor online to email or anything.  Someone has some splaining to do.

In the two weeks before everyone else starts school he has the potential to completely louse up the semester.  Or to set himself up for all the success he can swallow.  How to make it the second one is my quandry. 

We'll try again tomorrow - and I will walk him in if I have to (which I apparently do). I will talk to his friend on Friday when he's over to celebrate the completion of their first week.  Blessedly, his friend is other type of Aspie who can't help but follow rules and do things the "right" way, blissfully ignorant of social convention and embarrassment.  When they're together, they find the "happy medium" between both approaches. Son 2 makes Friend more socially acceptable, Friend makes Son 2 more responsible.  Maybe there's a way they can meet and walk to class together, if their 10 o'clocks are close by.  God, I hope so.

So no matter where he goes, high school, college, the workplace...there he is.  He can't escape himself. 

Jane

Back-to-School Time!

Here we are, facing down September already.  The summer always goes so fast!  The kids are enjoying their last free weeks, and one is looking forward to seeing friends again.  No, not all of them.  Son 6 would rather eat broken glass, and sons 4 and 5 are asking to be homeschooled.  Son three, though is looking forward to school, though even he says he'd rather have summer school again, as it's "easy".

So the preparation (logistical, emotional, and psychological) begins.  Logistically, there are timing issues (bedtime back to normal, wake up and ready to leave practice, afternoon routines to rehearse, and teachers to meet and greet.  That's aside from the home organization component.  Emotionally, Son 6 needs some encouragement to be away from Mom's side.  He not only doesn't like school, he absolutely despises it.  In his words, "I hate, despise, loath, and abominate school." This, at age 6. At least vocabulary isn't an issue.  Psychologically, they have to be prepared to deal with the stresses, the new kids and new teacher, the new classrooms, and the new order.  We're still on a four-day week, which makes life interesting (and turns Monday into a "floating nebulus day" neither weekend nor weekday for them), and complicates a few things.

First, logistical preparations.  We will go on shopping "dates", the kids and I.  I take each one individually to get their school supplies, have lunch out, and talk about what they're looking forward to, or apprehensive about.  It is the one thing about school start-up that they all enjoy.  (Frankly, it helps me, too, because otherwise, it's a little hard to make sure you have what each of seven kids requires without losing track somewhere along the line and feeling a little schizophrenic about the whole thing.)  We will also establish our organization system for during the year.  A hook for each backpack and jacket, in and out boxes for each child's papers / notices / permission slips.  Refresh the Art Cart supplies.  I keep art supplies and extra school supplies in a rolling set of bins near the homework area (which is the dining table for most kids, the ones that need pindrop silence study in their rooms, but still access the community resource).  I keep it stocked with colored pencils, crayons, markers, art paper, copy paper, construction paper, the extra textbooks (to eliminate "I forgot my book, I can't do the assignment" syndrome), and other necessities.  The rule at my house is that after-school snack doesn't exist till your backpack and jacket are hung up, and the assignment planner/ homework is in the inbox.  During snack, we go through the assignments everyone has, and collect required materials.  After snack, they start their homework.  When the homework is done (generally) supper is ready.  We also have the rule that if you have homework in more than one subject, you have to do the homework you hate first. Given my voracious readers, reading assignments can wait, because no way will they not do the reading.

In these weeks leading up to it, they will have their bedtimes pushed back 15 minutes a week until we hit 8pm for under-10 year olds, and nine for 10 and ups.  (We get up really, really early. I'm up at 4:30am, so bedtimes are earlier for my guys than most - but you know what your kids need and how much sleep is no exception.)  We will rehearse the afternoon routine as they have their snack, to help it become a habit I don't need to nag about.  We will visit the school, and call the teacher. I will write a letter of introduction to the teachers, so they know how great my kids are, and what works for helps during meltdowns, etc.

Emotionally, it helps if you're looking forward with anticipation rather than apprehension, so the teacher and classroom introductions are important.  Son 6 will require some social stories about trusting that mom will be ok while he's gone, and so will the puppy.  He will need to hear the planned routine for the schoolday several times over, and he will be sad when school starts anyway.  We're working on it. 

Psychologically, a smooth transition is desirable.  So the Friday before the new school year starts, we will have a campfire with the kids and their friends to say good-bye to summer.  They usually make plans for what to play at recess the first day, and who's bringing the bat and ball, frisbee, what have you.  It's a lot of fun, and helps everyone get ready.

I think it will all work out, and if nothing else, we'll know we did what we could.

We're all in this together,

Jane

 

Avoidance, Aspies, and Aaauuuggghhh!!!

Lately, what we're dealing with is avoidance.  Avoiding chores, avoiding work, getting frustrated when the work of a week has to be done in a day... in short, teenagerhood.  But teenagerhood on top of Asperger's can be a real pain in the ass neck...moving gradually lower.

The one, singular, salient reinforcer I have for son 2 is his PS3.   Unfortunately, one reinforcer should usually only be tied to one behavior you're trying to elicit.  And he has a lot of behavior that needs curbing about now. 

While he's enjoying the paychecks that come from his work as son 3's PCA, he avoids the paperwork that makes them come here.  He has already experienced that sending in the paperwork late means no check that week, but is tending now to kind of use it as a bank account - waiting it for it to build really high and then send it in.  He's not allowed to do this, the payroll lady has informed him, and so he is trying desperately hard to get his timecards in on time.  The problem now with the timecards is that he tends to want to fill them out during his established work hours, which creates the problem for us of having son 3 unattended. 

Aside from that, he needs to learn how to speak respectfully to employers and to his client.  If son 3 is having a meltdown, telling him to "shut up" is not the best idea, as it's hardly calming.  But, being an aspie, he fails to be able to apply the reasoning that he wouldn't like it, if it were his meltdown.  Yes, brothers do, occasionally say things like that to each other, but he's on the clock and he's supposed to be learning professional behavior.  He often reacts and interrupts my interactions with son 3, providing me a translation (inaccurate) of what son 3 is trying to say.  Now, I appreciate that he's trying to listen, but he's better off using the Dynavox or trusting what I hear, since I've been listening longer.  Imitation is also not a particularly strong suit, at least not when it comes to social interactions.  He doesn't quite "get it", and watching those who do is helpful in a minimalist sort of way. 

If I am telling him a job that needs doing for son 3, and he says, "It's not time for that yet, I have an alarm set in my phone."...that may be true, and it may be 5 or even 10 minutes early, but that is not an appropriate way to say that.  Quite matter-of-fact in typical Aspie form, but still mildly disrespectful, and any other employer or client would think he was batshit crazy a snotty little brat.  More appropriate would be, "I thought that was in ten minutes?"  But, no. 

Soooo...the thing is...which do I tie the reinforcer to first?  The paperwork, because that will affect his ability to keep the job in the long run - as it is the only area of his job that currently deals with people who are not related to him and therefore more tolerant of batshit craziness.   Yes, I realize that the respectful speech has to come too.  But first, he needs to keep it right with the outside world.  If he doesn't have this job, he likely won't get any job, because his other issues will get him fired before the first pay period ends.  I need him to have a job, because this is a training ground.  Now, I can require that he re-do things till they're right, and that's not a problem. He isn't getting off scott-free on the other issues.  I don't allow him to record any time spent arguing with me or the client on his timecard, because that's not what they're paying him for.  Time spent re-doing jobs isn't recorded either.  Not on the timecard.  I do require that he keep a running record of time he's lost, and then at the end of the week we add it up and figure out how much money he lost out on because of laziness and arguing.  It's not as salient as the PS3, but it does seem to be having some sort of effect. (Besides having him notice that "mom is mean.")

Anybody else have ideas for reinforcers or solutions to my dilemma?  We'll be going with this plan for this week and I'll keep you posted.

We're all in this together,

Jane

@sshats, Douchebaggery, and Bullying

I have a lot of kids.  Seven is a lot these days.  All kids go through tough times in the society known as school, and growing up.  But...today, I'm writing about bullies.  I've been reading an article about a girl who posted nasty things on her YouTube account about another girl in her grade, and the father not only fought her suspension from school in court, but he insisted that his daughter leave the video in question on YouTube.  To most of us, this is sublimely ridiculous.  His argument is "free speech" - my argument is "hostile environment".  Certainly, the girl is entitled to free speech.  But is she entitled to go ahead and make vicious statements about a classmate? 


I know a couple of my kids have truly hated school and dreaded going following a snide or thoughtless comment.  I can't imagine it was any easier for the girl maligned on YouTube. 

The father "would not allow" his daughter to take the video off YouTube, though the daughter offered to.  His argument is that the school was wrong in suspending his daughter for off-campus behavior.  While this may be true, there is something that the school can and should do.  Get policies in place.  If there is an instance of cyberbullying that comes to their attention, the parents (of both bullied and bully) should get (at a minimum) a phone call, as that will make it easier for parents to exert their influence on the bully, and for the parents of the bullied to affect a treatment plan for anxieties caused by said bullying. 

I am all in favor of the schools not meddling in our private lives.  That being said, the private life affects the educational life, as we all know.  Trauma in one area of life often affects another.  And being bullied is traumatic, particularly to peer-dependent, socially anxious teenagers, whether they be neurotypical or disabled in one area or another. 

However, the Minnesota State High School League provides a bit of recourse, at least against bullies involved in extra-curriculars.  The students who participate in MSHSL activities must, each year sign a statement of behavior that is not allowed, including drugs, alcohol, tobacco, and the like.  ALSO...they are suspended from said extra-curriculars for behaviors such as harassment, poor sportsmanship, etc.  I think the YouTube video would qualify as harassment, at the very least.   While the school itself does not suspend said students, the High School League prohibits their practice and playing in games of the extra-curriculars such as sports, Speech, Choir (though choir gets weird since it's co-curricular - only prohibited from public performances), Drama, etc.  Since the contract is signed by both parent and student, it does, indeed cover off-campus behavior as well as on-campus, including the students' freetime.

Although the father won the case, and perhaps he should have, regarding the school suspension, it is his failure to address whether his daughter's actions were ethical, moral, or just that frankly bothers me.  They weren't.

We're all in this together,

Jane

Because We Can.....Why Help Someone Else When So Much Is On Our Own Plate?

By way of introduction, I received this letter from the mother of Ashley Hyde.  He has neuroblastoma, a type of cancer that the UK has no protocol for treating in childrenThe Ashley Hyde Appeal on Facebook.  The US does, but he can't get here because of financial issues.  They're trying a new type of treatment in Germany, but don't have enough money to complete the recommended treatment cycles, etcetera.  Ashley needs help, and as much as I would hope someone would help my kids if they needed it, I would like to help Ashley. 

Maybe a "Pennies For Ashley" campaign in your workplace, or  2 dollar casual Friday campaign, any contributions are welcome.  And if you know any organizations that would be able to help Ashley, please submit their names to me, and I will get them to Claire, Ashley's mum.

The Ashley Hyde Appeal on Facebook

Dear friend,


Please take the time to read this and pass on:


Ashley was diagnosed in June 2008 and since then he has undergone surgery to remove a tumour, 13 rounds of chemotherapy, High dose chemotherapy, stem cell therapy and radiation, Ashley reached remission in May 09, this was the most amazing news he had won the fight.

Devastatingly just after 6 month of being clear of cancer on the 22nd december just before christmas and Ashley 7th birthday a routine scan showed the monster has come back and Ashley started the fight again.

At present in the uk there sadly is NO protical for a neuroblastoma relapse, so there is no guidance for doctors to what treatment is best to be given to try and fight this monster again.

Ashley started treatment staright away in the form of a trial chemotherapy on 27th december 09 of a mix that he has not had before in the HOPE this will have a desired effect BUT sadly it hasnt, Ashley diease has continued to spread dispite many rounds of various chemotherapy and radiotherapy, some how though Ashley has managed to bouce back after each round and each infection he has got inbetween treatment.

We had been told there were no more treatment options in the uk, both trials Ashley had been put forward to he didnt meet the strick criteria so could not have the possible life saving treatments. for the past few month Ashley has been on a treatment that was holding the disease but we know this will not last forever.

A GLIMMER OF HOPE -----

BUT wether it be by co-incedence or pure fate, By contact with a families whose child is recieveing treatment in Germany at present, very kindly mentioned Ashley and some how within Days of corosponding with the proffesor there and the hospital, Ashley has been accepted onto a trial treatment.

This has given us so much hope and it is the break through we have so been hoping for, it is no miracle cure and is still in the very early stages of trials, but IT is having promising results so we HAVE to go and HAVE to try, we just can not accept there are no option and to go home and "have time", Ashley is still fighting so we will continue to fight with him.

This treatment however is private and very costly at the sum of 21,000 per round, plus the cost of travel and the family living in another country for what could be months at a time.

At present we only have enougth money raised to fund 2 rounds out of the proposed 4, then if this is sucseful in clearing enough disease Ashley can go onto have immunotherapy - antibodies but agin we will have to fund this ourself.


PLEASE , PLEASE CAN YOU HELP ASHLEY in his fight, AT WHAT IS HIS LAST CHANCE TO BEAT THIS MONSTER.



all you need to do is follow these 3 easy steps



1. visithttp://www.bmycharity.com/V2/AshleyHydeAppeal or

http://www.justgiving.com/ashleyhydeappeal1

2. Donate just £2.00 to Ashleys appeal with either a credit card or PayPal account.

3. Forward this message to as many of your most trusted and generous friends, who you know will help Ashley with a £2.00 donation.

Remember by giving up the price of one cup of coffee or a cake, you could help Ashley to live a long and enjoyable life, where he would be able to see his little sister Amber grow up and enjoy the things with her, that we all take for granted!

Please help the force be strong in Ashley xxx

Ashley is now being supported by families against neuroblastoma and 2simple trust.

if you can not make a donation maybe you can show your support in another way, inviting other to join Ashleys group or holding your own fundrasing event for Ashley.

Independence Day - Take The Pledge

The DOT has asked us to blog about drinking and driving.  While I personally have never done this, I have known those who have.  I find it sad that in this day and age with all the talk about health, and the environment, and doing good things and taking care of ourselves, we still have the problem of drinking and driving.

Son 2's best friend had a close friend die in an alcohol-related car accident on the 2nd of June.  He was a 3rd year college student, with a promising future ahead of him in music and the arts.  Now, he is a buried 22 year old.  How sad, that the world loses that talent, that passion!  That we will never really know what he could have done. 

Please, when you're driving this weekend, to fireworks displays, or community fairs,  what EVER...be sober, or find someone who is.  You're not just risking your own life, you're risking the lives of everyone on the road with you.  This MATTERS. 

Enjoy our Independence Day, honor our great country, but know that servicemen and women did/are not dying for your freedom so you can kill more people on the roads.  Be responsible.  Killing innocents in alcohol-related collisions is no way to say "thank you" to our Founding Fathers, nor to our brave soldiers of today and yesterday.

We're all in this together.  Drink responsibly, drive unimpaired.

Jane

Together We Can Spread the Message

Stay Sober Stay Alive

July 4, 2010

1. Simply pledge your driving sobriety this Independence Day by noting your blog URL and blog name.

2. At the bottom of this “Blog Hop” you will see text in which you can grab the code for this McLinky. Simply click the link and copy and paste the code into your very own blog post’s HTML section. Then click “compose” and copy and paste this pledge, adding your own message to the top as I did above. Copy the pledge from “together we can stay alive” above.

3. Follow the host Hollywood Chic [-first on the linky-] of this Independence Day Pledge for more information on the Department of Transportation, Buzz Driving, and Stats.

Also an optional badge was created to spread greater awareness and linked to this pledge, please wear it proudly until July 5, 2010 when this pledge will close.