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.

Money Talks - Mine Says, "Goodbye!"

We all know the economy sucks right now.  What some people may not understand is how very, very much that sucks for parents of special needs kids.  Cutbacks in programs, downsizing at workplaces, government trying to NOT live in its means, us required to, equipment price hikes, repair price hikes, and less coverage due to the aforementioned cutbacks in programs... let's face it, it hurts!

This is not going to be political, but it is going to be a bit of a rant.  Well, maybe a little political because I believe our government is going the wrong direction to stop the crisis.  See, if I write more checks, it doesn't reduce my debt.  Maybe I'm thick, but I don't "get" how that works for government any differently than for me! 

Son 3 has been attending summer camp since he was only 6, starting with Courage Daycamps that the school paid for as ESY (Extended School Year) since they had no summer program themselves.  Well, the daycamp in our area was shut down due to lack of staff and extent of disabilities participating.  The physical disabilities just required more attention than the limited staff could supply, so this area was shut down.  Understandable, but suck-ish. 

The first year of no daycamp, we invented, "Camp Hotvedt", in which Mom was director and counselor.  We fished, cleaned fish, had campfires, tie-dyed t-shirts, made sand candles, window reflectors, went to the beach, built a solar oven from a pizza box (message if you want directions), and spent time enjoying the great outdoors.  It was great.  All the kids and I loved it, and we still do it every summer.

However, the 2nd year of no daycamp, we realized that son3 needed more time with his AAC device, and we enrolled him in AAC Camp at Camp Courage.  He had a blast!!  Ok, it cost $260, but it was well worth it (even though we kinda ate a lot of Ramen Noodles while he was gone).  A very worthwhile experience, and much needed.  Acceptance, pride in accomplishment, and a dvd of the camp play put on entirely with the kids' AAC's. 

Last summer, the campership covered everything, except application fee and gas to get him there.  Again, it was tight, but we made it.  Son 1 was going to college, and so there were several trips to Nebraska, as well.  All in all, again, very worthwhile.  We love Camp Courage, we love Doane College. 

This year, the campership covers $840 of the fee, but leaves me $360 to pay out of pocket.  I don't have it.  I'm trying to make arrangements, but honestly, with son1 having been home for over a year with no job, it's killing me.  We are going down.  I've been looking for a job, but they aren't there for the hours I'm available.  My dear hubby won't have me working when he's home, as we need to keep our relationship together, too, and we both are so involved with the kids and their issues and treatments, we barely get an hour awake together in the evening.  I'm also limited by the four-day schoolweek here.  I need to be here for the kids, well, one of us does, and let's face it, his earning potential is higher than mine at the moment.

It's driving me nuts.  Juggling the bills, paying out damn near $350/wk for groceries...everything costs more, which means every cent of disposable income we used to have is now invested in the every day items we need.  I haven't even bought light bulbs in over a month, because it would have to come out of the grocery money that is barely sufficient as is.  Add to that Minnesota's requirement that kids over the age of 16 be listed on your insurance whether they have permits or not, and OUCH!!  Sometimes, you just feel like giving up, surrendering the battle, and letting the creditors come. 

I'm sure camp will give us either time or a bigger campership.  But I know they're having a hard time, because donations are down because the economy sucks!!!  Every time I read a poll asking what the biggest problem facing the nation is, I want to scream.  Because the biggest problem facing ME, is the economy, stupid.  I also have to find a way to pay for repairs to the AAC which needs it's hard drive re-imaged...adjustments to the wheelchair...various therapies, and other things for the kids.  College fees, assistive technology, and then school clothes.  May God have mercy.


Postscripted update:  Camp is, indeed, giving us the full scholarship.  So that's one worry down.  Now to find gas & food on the road money...

Summer and Siblings

Here we are, two weeks into summer vacation.  The kids want to vegetate in front of screens, be they computer, tv, videogame, whatever.  While I understand, I also know that it's not what's best.  Since I always aim to give my kids the best, their desires here are not going to happen.

Limiting screen time is difficult, sometimes very difficult.  But it must be done.  In some families, a token system by which screen time is earned seems to work.  Mine is not one of those families.  My kids do not work for tokens, nor do they compromise for tokens.  I've found that taking away something they have already is more effective than promising a reward for the future.  For example, if they know that they get 2 hours each of screen time, they will be more motivated by losing 15 minutes than by having the same 15 minutes given to them.  Don't ask me why, that's just how they operate.

Son 2 made it through fourth grade by starting the day with 10 dimes, and having one taken away each time he was off-task.  Sometimes, we need to figure out what they work for (salient reinforcer) and add it when desirable behavior is shown, or remove it for undesirable behavior.  For my kids, giving up something is waaay harder than not getting it.

The plan, so far, is that they each have a list of chores to do, and may use their screentime when they're done.  Having someone else do their chores costs 15 minutes per chore.  I think it's fair, a few even get excited about getting someone else's minutes and offer to take on extra.  This may contribute to elevated sibling rivalry, but so far, I'm not seeing that problem.

The important thing is to get creative.  If what you're doing isn't working, change it up.  Reverse it.  Change reinforcers till it does work. 

When they don't respond as you want them to, there has to be a consequence, of course, but it needs to be one that they both understand and that makes sense to them.  Appeal to their sense of logic, whereever they are with that.  I don't believe in being punitive just to hurt them, it needs to make sense.  An example is a child who hits.  It makes no sense to hit them.  It does make sense to keep them away from the object of their aggression.  I "ground" my kids from being together if they can't behave together.  In about 15 minutes, they're begging to be allowed to play with each other.  If they're jumping or climbing on furniture, I "ground" them from furniture.  Really, one meal standing at the table, and they're re-considering the jumping/climbing.

We tell them, "Every action has consequences. Positive choices have positive consequences, negative choics have negative consequences.  You choose your consequences.".  It works.

Sometimes, things get worse before they get better.  Don't expect overnight compliance, but keep working the program you've put in place.  Progress is our goal, not perfection.

We're all in this together.

Jane

Summer Fun : With Challenges

It's been a week since my last post.  We're into the first week of summer vacation, and preparations for everybody's activities are on.  Now, with a crew the size of ours, that's a lot of preparations.  Sons 4, 5, & 6 won't be in baseball this year, as they missed the deadline to sign up (absent the day the registrations slips went home) and I don't have an extra $80 for late fees.  Sometimes, life sucks.  BUT, that doesn't mean we're doing nothing.  Okay, the first week I let them OD on videogames (while requiring one hour a day outdoors), but then we're into really living.

We will be running our own daycamp, with fishing, hiking, swimming, and campfires on the agenda.  Of course, tie-dye t-shirts and crafty things also await.  (Burnt matchstick sculpture, anyone?)  We do various sculptures, paintings, sand candles, etc.  The kids all look forward to "Camp Hotvedt".  Even the 20 year old.

But also, they need to keep their skills up.  Especially my reluctant readers, sons 5 & 6.  Honestly, the rest of my kids are reading zombies.  They tune into their books as much and as readily as to tv or videogames.  The reluctant readers, not so much.  These two just lack patience, though son 5 this year had a great teacher who encouraged him and introduced him to "The Secrets of Droon" and "Diary of a Wimpy Kid".  It really increased his motivation.  He has AD/HD, so sitting still to read was an issue, but the rocking chair helps.  

Son 6, though, with his "PDD-NOS" spent much of the school year spinning in the corner in front of the mirror on his carpet square.  I think his teacher tried, but I also think he has a long way to go to be completely prepared for 1st grade.  Before we moved to Dinkytown, we lived on the North Dakota border in a significantly larger (10 times larger) community where summer activities were in abundance, including reading classes that were phonics rather than sight-word oriented, and computer classes.  Here, not so much.  So I'll be trying to find something that sounds like and is fun and phonics based, as well as affordable.  There are kidblogs we may look at to see if that will help encourage reading and writing, though you can't be sure all participants are posting at any given reading level. 

Son 2, our graduate and new collegeman, is employed as son 3's PCA, a situation that serves everyone well, as son 2 gets money, work experience, and deadline meeting skills in a sheltered environment.  We have discussed that interacting with mom as employer is different from mom as mother, in that, when he's on the clock, sass is wildly inappropriate and intolerable no matter how justified he thinks it is.  That stating an objection respectfully the first time is required, and if that takes five minutes thought and re-visiting a topic, then it does.  Hopefully, we will see growth in him and his responses that will prepare him for the world he will enter in the fall.  If not, he'll have to seek employment in the public sector, which will likely not be nearly as forgiving. 

Son 3 will be working on his Compass Learning online and gaining new skills and continuing to grow, as well as blogging here, to encourage literacy activities in a real world application. 

We have a great garden this year, so we'll be taking time weeding, hoeing, harvesting, and (come fall) canning.  As always, life is an adventure and a challenge to be met.

We're all in this together,

Jane

"Be STILL, and know that I am God"

Interesting.  Today is ... interesting.  Amid the hustle and bustle for son 2's high school graduation, there remains another agenda.  Son 5 has class plays going on at 2 pm, and son 6 graduates kindergarten at 3.  Fortunately (?) both are in the same building and even the same room.

I almost wish we didn't have the two graduations, as the one eclipses the other.  This is life in a large family, though!  At least it's not the year we had a Graduation, Confirmation, First Holy Communion and Kindergarten Graduation the same month.  But it IS busy.

My own AD/HD tends to kick in at times like this, and I feel a bit scattered, a bit spread thin.  Over the years, I've come to see this as a call from God that I need a little bit of  "Daddy time" myself.  I've discussed "Daddy Nights" at our house in a previous post..(here) and I have learned that I also need that time.  Not just with their Daddy, but with Our Lord.  Don't get me wrong, dh and I have date night every Thursday, in which the kids fend for themselves (leftover buffet for supper, pick their own movie of the evening) and Daddy and I hide in the bedroom (available if necessary yet praying it's not.)  It's entirely necessary to take care of that relationship as it is the foundation of the family.  Without Dad and I, the kids really wouldn't be here.  So taking care of the "us" is as important as taking care of them.

But what I mean is time to withdraw.  25 minutes is really what I need.  A walk on our pedestrian path with the puppy, rosary in hand, usually does it.  Sometimes, though, life comes at me so swift I'm reminded of the saying, "I try to take one day at a time, but lately several days have attacked me at once."  I get overwhelmed, agitated, don't know what to start when... even my neurotic list-making gets out of whack.  That is  a sign to take time out, and "be still, and know that I am God".  Call it transcendental meditation, prayer, whatever you'd like.  It's allowing myself to just empty, into the knowledge that God is God and it will all work out in the end.  When the end is, is sometimes unclear, but it all works out in the end.   It's important to just rest in the stillness at times.  I know that God is here, and that He cares, but sometimes, I wish He'd do the dishes and clean under the couch.  Those times, just being is important.  Just to be.  To revel in creation and know that even if nobody comes to the Open House, or if everybody and their brother comes, God is in his heaven and all is right with the world.  ( I have noticed, though, that if the house is spotless, no one ever comes over.  It's only when you've been up all night with the crying insomniac or vomiting child and have no energy to even get dressed past your old college sweats and a t-shirt robbed from dh that people visit.)

Remember, when you're at your most frazzled, that's when to take a break and know that in the grand scheme of things, it won't matter.  Looking back, I don't remember who came or didn't to my HS graduation.  I don't really remember who sent cards or congratulatory phone calls.  A few, yes, but mostly family, and to be honest, family that's REALLY family will be there whether all my ducks are in a row or not.

We're all in it together,

Jane

Reflections Approaching Graduation

Today, I have a meeting at the school, for son 2's performance review, in which the district justifies his graduation despite goals unmet.  That sounds a bit extreme, perhaps, but it's the process.  His unmet goals include turning in assignments on time and frankly, turning up for school.  Hasn't been a strong suit.  But I'm all in favor of his graduation.

I am for it because 1.  He's done his time.  I think by now we all realize that he is at least "typical" enough to know that if he doesn't graduate this year, it's going to be embarrassing for him.  I think it's also safe to say that he is NEVER going to be the Pavlovian dog running for the bell.  That conditioning is, for him, aversion therapy.  Teaches him to avoid the bell, and the best way to do that is to not be there. 

                             2.  He does fine when he's creating his own structure, and will even use the timer on the stove to help him switch activities at appropriate times.
                             3.  College is a lot more scheduling yourself, and not so much running for the bell.

                             4.  This district has not been supportive, but critical most of the time.  It's been not so much understanding, but frustrating, for both him and his teachers and case manager.  Primarily, because they have to work within the structure of high school that his brain cannot wrap itself around. 

I know the law says he could stay till he's 21, but I hardly think that would be advantageous.  He would not turn up to be there in a place he hates with people whom he knows are a year behind him.  The thing about son2 is that he has always asked, like a corny method actor (whether in word or deed), "What's My Motivation?" 

He's motivated for college, because he is slightly perseverative on money.   Not only does he collect coins, but he also has saved enough to buy his own PS3.  He is not a wanton spender.  Therefore, the fact that college means he's paying for his education should be motivational.  Also, he wants to be able to support a family in 4 or 5 years.  ( That may be a bit of a pipe dream, but we're going with it for now.)  So money is important.

I believe that this young man could be and do anything he sets his mind to.  I look back over the years, and I remember the little toe-walking boy, the "Where's Waldo" obsession, Thomas the Tank Engine.... I also remember the young man who donated all his savings to the St. Vincent de Paul Society when his Catholic school class took a field trip there.  I remember the boy who didn't want the glory or notoriety of being an altar server, but instead has opted for the past 6 years to go an hour early to Mass and shovel the sidewalks, salt the ramp, and help with building preparation.  Who volunteered to clean the outside of the rectory.  Who came up with a plan for himself and his best friend (another Aspie) who is into computers and programming and writing software.  They are going to take  over Microsoft.  Friend will write the software, son 2 will be the corporate lawyer that does the hostile takeover.  Look out, Bill Gates!!

Through the years, I have spent time teaching practical skills, and intuitive skills, and writing skills, and finding formulas in everything I could to help him cope.  Though he wasn't diagnosed with Aspergers till after he had turned 13, we still treated symptoms, because that's what parents do.  I've seen growth, and regression, pride and pain, laughter and tears. Through it all, he hasn't stopped growing up.  He's done it slower, perhaps, than his peers, but he's growing up.  And I am proud.

I remember "tiny Shiny", the boy with the heartmelting eyes, and I look today at my Sean.... in awe.  For everything that the toddler promised, the man is become. 

Graduation Trepidation

Son 2 is struggling.  We have always been straight up with him about his disability, and how it impacts him, and what compensatory strategies are, etcetera.  Two years ago, he said to me, "Mom, I'm just not as "grown-up" as the other kids in my class, am I?".  That was quite the moment for both of us, as he realized he was lacking in the social make-up that the other kids instinctively "get".  Of course, we had the discussion that although he was behind them in some ways, in some ways, he's ahead.  For example, he doesn't get into the drama they do.  He's always seen past, over, and around it.  He regards it as foolishness, and questions why they don't "just get on with it".

However, as his graduation approaches, he finds himself in a bit of a pickle.  Though he wants that independence of college, he fears it, as well.  His brother and sister have not been successful in their attempts at higher education, and he fears that independence may well kick his butt as well.  On a few levels, he'd rather stay in high school, and do more AP classes.  Which is great, but frankly, the district hasn't been great for him, with the exception of the Speech Coach and English teacher.  His case manager sort of gets him, and God knows, she's been willing to work with him and with me to resolve differences.  He hasn't been the most academic of kids through high school, it's been a struggle all the way.  He refuses to do homework at home, as it's actually schoolwork, tells teachers "No, I don't have to do that now. My IEP says I get to hand it in later"  (emerging, though wildly inappropriate, self-advocacy in the making).  Naturally, teachers don't hear self-advocacy, they hear a snotty little brat.  Who could blame them?  Sometimes, the frankness of Aspies gets them in trouble.

We've visited the campus (and he's familiar with it from other tours, and events that have been held there - it's my alma mater), spoken with the disabilities director, and arranged special admissions so that he can take only one or two classes while adjusting to the academic rigors.  He'll be living at home, to save money and spare him being thrown to the wolves in dorm life right away.  Still, he worries.  It's who he is.  It's what he does.  I wish I had a way to tell him it'll be all right.  That I expect college will be his baileywick, as he will get to make his own structure, and not live by the bells at high school.  But nothing I say seems to ease the trepidation he feels.  We've had this conversation I cannot count how many times. 

My plan, now, is to get him through graduation.  He needs to get out of this district and see that the whole world is not high school, which is traumatic for everyone, not just Aspies.   He needs to see that people on campus will accept him and he'll have loads of friends.  His best friend and fellow Aspie from high school is also going to the same college, I think that will help ease the transition, as will his peer mentor.  (An upperclassman studying special ed that gets credit for helping to track homework and appointments.)  Sometimes, to ease the fear, the only thing to do is face it.  I believe he can do anything, if he just puts his mind to it.  This is the boy that wired my house for sound at age 5 with his walkie-talkie set. The boy who created a "shock box" to demonstrate electrical transformers.  The boy who isolated DNA from a hair at age 8.   He has creativity in abundance, and just needs to be able to show it.  Success is surely a possibility, if not probability, for him. 

My current plan is to have the Speech coach talk to him.  She understands, accepts, and loves him for who he is and also believes that the creative mind is stifled by the forced structure of high school, and that to be able to set his own structure in college will be remarkably freeing for him.  Sometimes, Mom just isn't enough.  Sometimes, it's a good thing to have a Speech coach to tell your kids what they need to hear.  Hopefully, it'll help.  If not, well, time will show him that he can be successful, if he doesn't give up before he really tries.

We're all in this together,

Jane

Parties, Players, Planning and oh, POOP!

This past Saturday, we had son 3's birthday party at the local bowling alley.  I had asked the school for a list of his friends, for example  -  that he eats lunch with.  I got the ten names, and addressed invitations to them, got several RSVP's, and we were looking forward to party time.    Now, son 3 has CP, and is fairly severely affected.  He has severe dysarthria, uses a power wheelchair and AAC, but has a great attitude, and the bowling alley we picked is accessible and has ramps for wheelchair bowlers to put the ball on.

So I started out Saturday optimistically, though I knew we were logistically impaired by the fact that Son 2 had a sleepover guest Friday night, and we would be waiting for that guest to be picked up Saturday.  Still, I had a cake to bake and decorate, a van seat to remove to accomodate the wheelchair, and I figured it would go ok.  The men in my life figured it would go okay if I did everything.  Unfortunately, I can't lift the van seat alone.  (Well, I can, but if I do, I'm not bowling or doing much of anything else with my right arm for awhile.  Carpal tunnel being the joy it is.)

My darling husband, whom I truly love, decided he would play the PS3 while I got things ready to go.  That was not helpful.  Rarely are videogames helpful when there's a deadline involved.  Suffice to say that I got little help, and we ended up behind schedule.  What else could wrong?  Weeeellll.... 

Running late for our own party, I got a phone call from a guest's mom who told me that the bowling alley in question was closed, opened at 3 not 2, and what should we do now?  I asked her to hold tight for a minute, called the alley, got a machine, and made the decision to move into the park behind the bowling alley for the cake-eating, present-opening portion of the party.  I then called hubs to let him know (since with a van seat removed, we need two vehicles to transport our family), and proceeded to the park.  We met, got the cake eaten and went to the bowling alley.  Hubs was fit to be tied, as he felt that any misunderstanding or anything was completely unconscionable. 

Bowling went well, the park went well, the kids had a great time, and I think that's what it's all about.  BUT...I've learned a few things.  1.  Call the place a few times.  Make sure you're speaking with management, not the new teenager.

                                                  2. No sleepovers for other children the night before parties.

                                                  3.  NO VIDEOGAMES THE DAY OF.

So, having figured all this out, that's the story of the party that was a bit of a mess, but turned out pretty darned good, all things considered. 

The only other thing is... all these friends of Son 3 are also disabled.  Interestingly, I found out from the parents that the majority (all but one) have 1:1 para support at school, and that is why they eat lunch together.  Son 3 doesn't even like one of them, though that kid likes Son 3 quite a bit.  I'm glad Son3 has friends, but I'd like to see him interacting more with typical peers.  It's actually a request I've been making most of the year.  I feel that he needs that typical, un-para-aided type of interaction to allow him to truly grow.  He gravitates mostly towards adults, because they are (generally though not always) more patient with his attempts at speech production, digitally or vocally.  But all teenagers need to be comfortable in their peer group, and he is no exception.  Just because he has physical issues is no reason he shouldn't be involved with peers in group outings, etc.  They have games and dances, but he never wants to go because his para won't be there.  I think his dependence on the para needs to be addressed, and he needs to associate with typical peers, as well as those with disabilities. 

It was a learning experience on many different fronts, and it's always good to keep learning.

We're all in this together,

Jane

Kids Say The Darnedest Things / Daddy time

It's interesting to note what kids ask for, and of course there are the expensive items, the "not gonna happen" items, and then... there are the things that tug my heartstrings and fill my eyes with tears.


My husband and I have both made sacrifices for me to be a stay-at-home mom.  We live on less than most people do, and we have more children than most people do.  But we decided when we embarked on this journey that we would raise our children without daycare, since it was important to us that we pass on our values, not the daycare provider's.  We decided that whoever had the greater earning potential would go out to work, and because my Registration status was grandfathered in, I lost my registration as a nurse when I needed extra time to recuperate from son 1's birth.  So, by default, hubs was elected.  He has been an amazing breadwinner, and spends time with the kids when he can.  I take over a lot of the usual "man work" around the house, eg mowing the lawn, yard work, etc., so that when he has time off, he can spend it with the kids.  Still, he's gone 9 hours a day, and the kids miss him.

When we asked son 3 this year what he wanted for his birthday, it was one of the heartstring tugging answers that we got.  He wanted Dad to go with him on his field trip today.  The field trip is to the local State Park, where they will be fishing, hiking, and having a fish-fry (to which I am invited).  This is all he asked for.  This is all he wants.  Dad and he are both avid fishermen.  Son 3 has won the "awesome angler award" 4 years running at camp.  Eleven walleyes in one day.  Of course, Dad was flattered, but wondered about taking the time off, since Fridays are down days at work, and he is the Maintenance Supervisor, if it's shut down, he should be there to oversee repairs and maintenance to equipment.  I suggested he tell his boss straight up that son 3 had asked for time with dad today for his birthday present, and (not surprisingly) it tugged the boss's heartstrings, too.

Son 6 usually asks for a "Daddy Night" for his birthday.  "Daddy Nights" are nights when Dad gets home from work and spends the evening with only one of our 6 kids at home.  We've worked it out so that they take turns, but son 6 can't seem to get enough of them.  They watch movies, play videogames, or watch TV, and have snacks, and talks.  It's a good thing for them to get the male perspective, being males themselves.  I can help with a lot of things, but not, say, asking girls out, or why girls don't eat on dates.  (I was never one of those girls.)

Dad's heartstrings get tugged, too, when the kids ask for time with him.  And they need it!! Studies show that kids with involved, active fathers not only get better grades and stay away from drugs, but also have healthier interpersonal relations.  I think the fact that Dad has a few Aspie characteristics of his own helps him understand the boys better, as well.  He has struggled with depression in the past, but has made it through, and become even more compassionate.

Our marriage has seen trials (diagnoses for our boys, son 3's traumatic entrance, the Flood of '97, the loss of our home, 8 moves in one summer, dad's hospitalization for depression), but we have come through it all.   I am reminded of Job "When he has refined me, I shall come forth as gold".  I know we're not gold yet, but I also know we're a lot more "refined" than we used to be.  We've come to a place where we both see each other as imperfect human beings who are nonetheless lovable, and worthwhile.  His strengths (mechanical giftedness, smalltalk, directness) complement my weaknesses (introversion, no brain for physics) and my strengths (words, tact, general knowledge, medical background) complement his weaknesses.  We are growing closer year by year. 

It's a good feeling that Hubs is with his boy now, this boy who can't do the mechanical work or the application of the physics they both love, doing something they both enjoy and can participate in as equals.

We're all in this together,

Jane

Weasels Words, Procedural Nightmares, And IEP's Gone Wrong

I have learned the hard way that some districts try to "weasel" out of providing FAPE (Free APPROPRIATE Public Education) by including what I refer to as "weasel words" in the IEP.  I found this out the hard way, as I was attempting to enforce son 2's IEP in 9th grade.  It stated that he "may have paraprofessional support in all academic classes" (thereby excluding choir and gym, where he was fine).  When I asked him how things were going with the para, he said he really wouldn't know, as she was mostly with the other kids.  Come to find out that "may" is a weasel word.  "Paraprofessional support" is a weasel word, if you interpret it as meaning, "Support by a paraprofessional for whom your child is the main concern".  Son 2 was traveling the regular education halls and classrooms with a pack of 8 kids with disabilities, and one para.  Not particularly effective.  But legal, because of "may", and "paraprofessional support".  Basically, she was there for him if he happened to have a meltdown, she'd walk him to the resource room.  The rest of her time was spent with the other kids, who were loud(er) and more disruptive than he.  In light of that, I am attempting to come up with some of the other weasel words from the weasels in my experience.  Feel free to add any I haven't listed.

"Access to" bit us one year with son 3.  His IEP stated that he would have "access to" his AAC device in all settings throughout the school day.  Which, as it turned out, meant that it could be hung on his wheelchair and the wheelchair parked in the hall, because he had "access to" it by asking his para for it.  Which he couldn't do, because, (HELLO!!!) he's nonverbal, and needs the assistive communication device to ask for it.  Makes sense to me, but then again, district weasels aren't about making sense - they're about the easy, cheap, quick and dirty way. 

Another weasel word would be "will be allowed".  Sounds good, right? Son 2 "will be allowed" to use Dragon Naturally Speaking to complete written assignments over one paragraph in length.  Of course, it doesn't say when he's supposed to TRAIN Dragon to recognize his voice patterns...  Also, this means that he's allowed to, but doesn't say if HE has to request it, if they'll suggest it, etc.

Getting a straight, clear, concise IEP is kind of like trying to nail Jell-o to a tree.  So, if you find that you've allowed some "weasel words" into yours,  then remember that YOU, and you alone, have the power of "no".  Write the letter requesting a team meeting in 10 days to change the wording as follows:  "May" becomes "Will".  "Will be allowed" becomes "Will use after training the program in one resource room hour during the first week of school".  "Will have access to" becomes "Will have with him in a place where he can reach and use it". 

For me, the IEP meeting is almost moot, as it seems that what I've understood verbally is generally vastly different than what they give me in writing a week later.  But the power to disagree is solely parental, and sometimes, "stay-put" is the best option.

We're all in this together,

Jane

"The Best Laid Plans...

of mice and men gang oft aglee". This phrase rings out to me before, during, and after IEP meetings planning for a year ahead. Seems no matter what, something unexpected will happen. To that end, my best tips for IEP preparation are posted here.

I'm organizationally impaired, myself, so I keep an expanding file for each child, each year. One pocket for letters/correspondence, one for IEP proposals and drafts, one for work samples, one for evaluations (school and private). Since districts shred at years end, it seems appropriate to be able to supply missing yet pertinent documents for them, should the need arise. Save every note from the teacher, every scrap they send with your child. (Yes, even Post-Its). The district saves every excuse note you write, every jotted line you send. Return the favor.

The letters you write, not only copy and save, but make them count. NIMH has a great booklet of sample, customizable letters to districts. The single most important thing about any IEP, evaluation request, etc, is that it be IN WRITING. "If it's not in writing, it doesn't exist." That is SOOO true. If you haven't requested in writing that your child be evaluated for a disability, you have no proof that you have at all, and if you do request in writing, you not only have proof that you have, but you have the DATE that you did. Similarly, if the district will not put a refusal in writing, they will say that they haven't refused at all. So get it in writing. If they are claiming they haven't refused, then ask them to put it in writing that they're not refusing. Anytime a school or district says, "But you know this is how we will do it", say, "Put it in writing, please."

The next most important thing has to do with writing, as well. Don't let them get away with "weasel words". "Weasel words" are those words that sound nice when you read them, but render the IEP unenforceable. "May" is a weasel word. "May" also means, "May NOT". "student may have paraprofessional support" also means "student may be left to his own devices". "Have access to" are weasel words. "Have access to" means, "if your child requests it rather specifically, then that particular support "may" be available." Avoid weasel words.

I've been doing IEP's for 13 years now, and have learned a few tricks in my time. I'm sure there's always something new, but these are my biggest tips, the ones that got by me the first times out.

We're all in this together,

Jane

Fun - Through Aspie Eyes

This time, I am posting son 2's Creative Expression. It's a speech he wrote in 8th grade, that completely shocked, stunned, and impressed not only his coach, but a lot of judges.

To me, it's interesting because it belies the myth that Aspies have no sense of humor, that they don't "get" sarcasm and irony, and because it states so realistically his perception of what society deems "fun".

What is fun? Webster says it's the pursuit of something that brings enjoyment. When I asked my coach for topic suggestions and she said, "Oh, just do something fun", nothing leaped immediately into my mind. As I cogitated and pondered on "fun", not only did the word start to sound weird, but it also resulted in the following "Brain Droppings", to quote George Carlin.

Something Fun

For me, the highest form of fun is the videogame. But this isn't true for all, and is somewhat subjective. My mother, for example sees no fun involved. "How can you call it fun to keep repeating the same level umpteen times and getting so frustrated you yell at anything that MOVES?" The fun is in beating the impossible level boss or finding the key to solving the puzzle that lets you progress. Still, not for everyone. Some people, daft though they be, just don't enjoy videogames.

I considered sports. Though the participants seem to enjoy them, I just don't see it. Football is, essentially, running while holding an odd-shaped ball as eleven LARGE men attempt to FALL ON YOU. Fun? I don't think so. Basketball is trying to get an orange ball through a small hoop and while five opposing players try to prevent this. Ostensibly a no-contact sport, but why then, the term, "foul"? Baseball. You whack a small ball (that's done nothing to you) and run around the checkpoint while 9 players attempt to touch you with the ball you whacked. Fun? Not even for the ball. Golf? Well, Mark Twain said it best, "Golf is a good walk spoiled by a little white ball." Clearly, sports are also subjective.

Movies? Almost everyone enjoys movies, though not the same kind. An afficionado of horror films, for example, is not going to be having fun with a tearjerker drama or romantic comedy. Let's explore the genre concept a little closer: Horror films - one watches these to get scared. On purpose. Dramas - are watched when one WANTS to feel sad. Comedies - are generally people poised in the most embarrassing situations possible. (An example on TV is America's Most Painful - er - Funniest Home Videos. Not an episode without someone getting whacked in the crotch. This is fun?) So movies, too, are subjective.

Perhaps we should turn to advertising for our cue, as we do so much in our society. Then again, these are the people who tell us that a candy bar this <---------------------------------> big is "fun size". If that's the size of fun, what must a regular bar be? High Hilarity? And a king - size bar must be "Unbridled Ecstasy".

Generally, I find, if something advertises itself as "fun", or has the word "fun" on the label, then it involves the least amount of actual fun. For example, a can of Silly String has the word "FUN" in big red letters on the can. Yes...push the button and... a mess appears. Whee. Big fun. I can get that much fun by giving my two-year-old little brother Dad's shaving cream. Or just showing him the toilet. He can play for HOURS in there. The water, and swirling fascinate him. He once decorated the bathroom in finger paint art done in his own poop. (But that's next year's speech - "FUN - With Feces".)

Occasionally, "fun" takes an odd turn and runs into "fun-ny". We all like to laugh, but what we find humorous is subjective based on life experience and individual tastes. Some people like to do fun-ny things. I had a friend who had a crush on his dental hygienist. He ate an entire package of Oreos right before his appointments. Then another friend named his dog, "Stay". He found it amusing to watch the dog go back and forth as he said, "Come here, Stay!".

I think it would be fun to put my car key in my house... and have it start. I'd drive down the freeway, and when the cops pulled me over and asked where I live, I'd say, "...right here". Then I'd park on the median and yell at all the other drivers to "GET OUT OF MY DRIVEWAY!!". But the cops and the other drivers might not think that was fun, let alone fun-ny.

To end this speech, some of the thoughts I had that I couldn't make a speech out of on their own.

"When I die, I want to go quietly, in my sleep, like my Grandpa. Not screaming in terror, like the passengers in his car."

"It's a small world, but I wouldn't want to paint it."

"Purple monkeys should not be allowed to fly hot air balloons while singing showtunes medleys!!"

But I digress. In conclusion, "fun" does indeed seem to be subjective. But it can be "fun" to contemplate "fun" until the word "fun" starts to sound "fun-ny".

Well, I'm off to put Slinky's on escalators. Now, that's FUN.

And The Beat Goes On...

One of the many challenges in raising kids with disabilities continues to be the need for repetition. We tell them "brush your teeth", "wash your face", "remember your jacket", "don't forget your manners"....ad infinitum, ad nauseum.

But sometimes, the repetition starts to get to us. To me. I find myself occasionally wishing that I didn't have to say things like, "Keep your tux jacket with your tux." Case in point... prom.

We rented a tux for son 2, and he looked amazing. He was dashing and debonair, romantic and responsive to his girlfriend, but when he changed clothes between the dance and the after-party... he lost his jacket. By the grace of God and the superintendent, the jacket was recovered in time for the return. But still. Why would you put the rest of the tux on a hanger, and not the jacket? He has no answer. I'm still wondering. Is this Asperger's, or is this teenagerhood? Probably, as with most things, a mixture of the two. The Aspie in him said he liked having the jacket for security and weight. The teenager took it off and put it on the bleachers when he was too hot from dancing.

Some things can't be circumvented, but more things can. I try to address every possible forseeable complication of any given situation, but this one, I didn't see coming. He's learned to wear a jacket, so I know he won't freeze to death. He knows when he's overheating, so that sensory worry is solved. But the BLEACHERS? Ok, he now understands that having all his stuff in one place is the best idea, and swears that he will do that in the future.

So we take it in stride, return the tux, and plan for the future. Sometimes, meeting the challenge means finding that the beat goes on. Another day, another challenge.

My Freak Parade

For me, one of the toughest things to overcome is the inability of some people to see past their life experience and attempt to actually put themselves in the other person's position to try to help.

Many well-meaning people have offered suggestions on parenting to me throughout the years, some valuable, some a pain in the neck (moving gradually lower). A fellow parent of an autistic child (HFA) a couple years older than son 2 was discombobulated by the fact that my son is late for... well, everything. Since her daughter is compulsively on time, she thought that was characteristic of all autism. (No. Sorry. Not so much really; no.) People like that are easy to deal with, and generally understanding when you explain that autism has many manifestations, and it would be difficult to find two on the spectrum with the exact same symptomology. The ones that give me pause, though, are the ones who stop me in the store to tell me that my boys are a little wild. (You're kidding, right? Good thing you're here, I might've missed that!) Thus I come to describe our family outings as "leading the Freak Parade". Naturally, as their leader, I'm the bigget freak of all, and we have family laughs and unity over the joke we collectively play on society.

I grow weary of the daily explanations. Son 3 is not in his wheelchair because his legs don't work - rather, it is his trunk that would not hold him up. No, he doesn't envy your ability to run - the wheelchair goes 30 mph. That is another post - parenting and FEAR. Son 2 is not hiding in the bathroom at Wal-Mart because he's committed shoplifting, he just likes the quiet and being around water. Sons 4, 5, and 6 are running because they want out of here as much if not more than you want them out of here. Son 1 is finding other people to talk to because right now, the Freak Parade is a little embarassing for him (yet another post, Parenting Teenagers).

Despite the weariness, I have learned to keep explaining, because it increases community awareness. My sons give explanation for themselves as well, in their own words, which, also increases awareness. In themselves and those they address.

I have an AWESOME Son 3 anecdote - for those who assume he is younger than he is based on physical capability.

We were at the Dr.'s to get his Botox injection for his inner thighs, and the nurse thought she was going to be funny and distract him by wearing a clown nose. He was calm, collected, and ready for the sting, but he tends to be treated younger than his age, or mentally deficient. He looked the nurse in the eye, and said, placidly, "Put down the crack pipe for just FIVE MINUTES. I'm 10!!". He cracked up everyone in the waiting room, and the doctor had to stop laughing before he could deliver the injection.

As a recovering addict, I learned 20 years ago to "take what you like and leave the rest". That's truly a program saying. But it does apply so well to well-meaning advice-givers-in-passing. They don't understand, and you need to decide if it's a nod-and-smile moment, or a teachable moment. It takes awhile to get used to making those decisions, but once I did, life has been much more fun.

Cheers,

Jane

My first blog post. I think it's appropriate to go into some detail on who I am, who we are, and why I'm starting this.

I hadn't initially considered blogging, because God knows, there are plenty out there already. Thanks to the encouragement of friends, I have come to realize that I may have a different perspective than other bloggers. The whole idea behind this blog is to share my experience, strength, and hope with those who are beginning to traverse, or stuck in the middle of, the special education nether realms.

My kids range in age from 6 to 22, they have various disabilities and abilities, and they are unique human beings. (Even though son 5 strongly resembles son 2 ten years ago.) They face different challenges, and parenting them is a challenge in itself.

Neurodiversity is bound to be addressed here, as is accessibility, and consideration. I think that every child should have an IEP, since they all have an "I". No one-size-fits-all education will ever be the ideal, but it seems to serve most.

I look forward to hearing readers' opinions, and following your blogs as well. I anticipate an interesting journey into the blogosphere. Thank you.