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.