Our college option

I found out about a new option for Joe for college this week.  Up until now, I had pretty much written off college.  I had hoped to maybe get him to take some basic classes at a community college, but full-time, dorm life college I had figured was never going to happen. 

Then this week I found out about a local college that has a program for 18-25 year olds with intellectual or developmental disabilities.  It is a two year program with internships, peer mentors, etc. for 20 students where the kids live on campus in a supervised dorm.  Several of the kids from his past activities are also applying.  Reading over the requirements, I was over the moon -- he met all of the criteria easily.  This was THE program I wanted for Joe and it was in town. 

It is expensive, but we had put aside money in a 529 account and that can only be used for post secondary education.  Except ... that neither of our children were likely to ever go to college.  So now we had this money that was going to be penalized heavily if we were to ever access it again.

Overall this seemed like a match made in heaven.

Until I brought it up to Joe.

The very first words out of his mouth were "I don't want to live in a dorm."

Crap.

Finally after talking to him at length, I figured out the reason was that he was worried there would be fire drills in college.  Nope, no fire drills.  A secondary (but more minor) concern was uniforms.  Nope, no uniforms. 

So now he is excited.  Now we just have to see if he can get in.

Say some prayers, peeps!

Not even a small pebble ...

They say people in glass houses shouldn't throw stones, but right now so many of them are still chucking boulders around it isn't funny.

Just a few short days ago, a fellow Autism parent snapped.  Was it right?  Hell no.  Could it happen again?  Most likely.  To me?  God, I hope not.  To someone else I know?  Maybe.

There are so many questions and so many possibilities to our lives and those of our children and yet so many people (especially special needs parents) are still so trapped.  When Alex's mother stabbed him repeatedly earlier this year, so many people were so quick to condemn her.  How can any mother kill her child?  Others tried to be understanding.  She was just dealing with so much.  In turn, these people were vilified by the autism community.  There is no excuse for killing your child. 

No excuse perhaps, but sometimes people snap.

The statement has been made over and over again, "God never gives you more than you can handle."  I happen to disagree with this immensely.  Mental illness throws everything out the window.

If a typical teenaged star athlete commits suicide, does everyone instantly label the parent as bad?  Maybe.  But most likely there was some mental illness that caused the child to lose hope and lose the will to live.  If a mother (or father) of a typical child kills him/her there is instant horror and outrage.  How could he/she be so selfish?  But when a parent arranges a murder-suicide the first assumption is usually (I would hope) "what brought them to this point?"  After all when you try to take your own life as well it isn't so much selfishness as despair.

So many people have never dealt with the intense violence that was a part of Kelli and Issy's life.  Many have never dealt with the crushing choices facing them.  How about living 2.5 hours away from your home and the rest of your family in order to have your child go to the best school?  I am willing to bet not many people could take that one on the chin and keep going as though nothing happened.


Autistic people will say that if you try to justify a crime like this you diminish an adult autistic's life.  I think it is safe to say that Issy's life (and Alex's) were already diminished.  Does that make it right?  Hell no.  Does that make it sad?  Immeasurably.

So before all the haters out there jump on me for excusing or justifying this crime, let me be clear.  I AM NOT!  I am trying to understand.  I just want to keep this from ever happening again.  I wish I had answers.

Maybe this hit me especially hard because both these children were 14 and my Alan just turned 15. 

All I know is I'm not throwing any stones at Kelli ... not even a small pebble.

An eye on the future

In two weeks, my "baby" starts high school.  Two weeks later he turns 15.  Where has the time gone?  It seems only yesterday that I was holding the most agreeable baby in the world (or so he seemed after his brother).  Now I am practically looking eye to eye with Alan.

Yet he is still so "young".  He still wants to play "This Little Piggy" and "Row, Row your Boat."  He still watches Veggie Tales and Thomas the Tank Engine.  But he had a "girlfriend" his last year of middle school.

He is such a little conundrum!!!

We have had wonderful successes lately.  Almost conversations and break-throughs in communication.  I've also had moments of abject terror that haven't been chronicled here where I fear for this young man's future.  He doesn't have a sibling that can care for him -- Joe can barely take care of himself -- so what is going to happen to him when DH and I are gone?

How will his new teacher and school turn out?  I know of almost no one that has gone to this school and I have no knowledge at all of his new teacher.

It is funny, but over the years, things have always worked out.

• When we wanted to put Joe in private school because of the horrible experience we were having in public school, DH got a promotion.  That school turned out to be one of the best moves we made.  
• When Joe was looking at high school and we couldn't find a private one that wanted him, we went back to our local public school and for the most part it was a rousing success. 
• When Alan needed a private school, the Catholic school system here opened up a center for autism a few miles from our home.
• When Alan's OCD became more than the private school could handle, we were past elementary school so we didn't have to fight with the school district why he wouldn't go back to that school.

So while this is not usually an overly religious blog, I am just going to say that I am trusting that God will take care of us yet again and this high school mine field we are facing will be successfully negotiated.

At least I am trying to trust and not let the terror win.

The second born

Alan was soooooooo different from Joe as a baby.  He was cuddly, social and just fun.  I thought then that most of it was because I was a more relaxed mom and I am sure that was a significant part, but I also believe he was just more typical.

He was however a huge baby.  He was 10 lb. 7 oz. and 22" long and he was 2 days early!  I had four different people (including the nurse at our parenting class) ask me if I was having twins.  That was very hard on Mom’s morale!  

In fairness to the nurse (and the other three peeps) I did gain 49 lbs. that I would claim.  I might have gained more but I was terrified to get on the scale at the end.

Alan always had a twisted foot.  It is even visible in his crib.  And when he started to crawl, his foot was always getting in the way.  I think the poor guy was just cramped in the womb and his foot grew that way.  A little more guilt for mom.  Even with his twisted foot, he walked ran at 10 months although his gait is off even today.

In many ways Alan was the classic second child (at least in our family).  He was resourceful, opinionated, and mischievous.  

In our 1999 Christmas letter I said "Alan is 15 months old and already has about 20 words so hopefully we won't have any language difficulties this time around."  Ha!  Mom was so delusional!

Of course by the 2000 letter, things were different. 
Unfortunately, Alan is not talking much and just got tested and approved for First Steps (the program which helped Joe get his speech and language therapy before age 3).  Sigh.  Here we go again.  If there was one lottery in life we would have preferred NOT to win it would be the "All our kids need Special Education for Speech and Language difficulties."

          
And yet when I went looking for pictures for this post I found dozens of pictures of Alan staring intently at other people (usually children) rather than at whoever had the camera.  I didn't have that with Joe.  I can't imagine I culled them all out so I think Joe just wasn't as interested in other kids as Alan was.

The differences as they have grown and developed have been just as noticeable.  Of course in the "mom guilt" column I have the extensive language journal I compiled for Joe and with Alan I could only look in the photo album and old Christmas letters and hope I was interpreting things correctly.

Next up:

Comparing and contrasting the two … because for two children from the same genetic pool with the same diagnosis, these boyz are as different as night and day!





 

Little Joe

Looking back on Joe as an infant, it is easy to see he had autism.  Of course DH and I had very limited experience with babies so to us, he was just "Joe" and if we thought anything was wrong, we figured it was because we didn't know how to handle a baby.

3 trains in one hand - that is a unique skill.

But Joe did not like cuddling much.  He never imitated noises and if you would try to imitate his noises, he would get quiet and listen to you but not make his own.  He ALWAYS had at least two things in his hands at all times.

He would make himself go rigid when he was angry and he went to sleep best by being left alone.  Of course, unlike many children with infant onset autism, Joe also slept like a rock.  He slept through the night at 2.5 months and before 4 months he was sleeping 12 hours straight every night.

We were in a playgroup and I noticed that all the other kids were starting to talk at around 10 - 18 months, but not Joe.  Nor was he pointing.  I started pouring through What to Expect the First Year and couldn't find anything about late talking children except autism.  The description in those days was quite narrow and of course, Joe didn't sit in the corner and rock, he didn't toe walk and he wasn't excessively flappy.  As a matter of fact, my incredibly non-autistic niece did much more toe walking and flapping than Joe!

At 18 months, DH and I were assured by everyone and their pediatrician that Joe would be talking by age 2 and to just "Give it time. Boys take longer."

Needless to say at 2 Joe still wasn't talking.  As a matter of fact, he had about 15 words when he was evaluated by a speech therapist shortly after turning 2 and 5 of them were letters of the alphabet.  He had briefly said "see" and sort of waved in a direction (although still not pointing) but "see" degenerated into "gee" which degenerated into "guy".  Needless to say the SLP that First Steps provided was not impressed and she was the first one that said "PDD-NOS" to us (of course with all the necessary disclaimers "I'm not a doctor", "You really need to get him evaluated", etc.) 

We loathed that first speech therapist for more reasons than just the fact that she was the first one to say "autism" to us.  She had a very hesitant way of speaking, constantly apologizing and never finishing her sentences, and DH and I just looked at her and at each other and thought, "This woman is going to teach our son to talk?"

After her we did get a wonderful speech therapist that we loved and Joe loved, but he still didn't talk.  He actually deteriorated further to where he only had 10 real words, so we finally bit the bullet and took him to a neurologist.  

As with the speech therapist we managed to get the worst neurologist in town.  He had hideous eye contact and stupid boring toys and then said that Joe had poor eye contact and wasn't interested in toys.  Well duh!

Of course the sad thing was that he was correct in his diagnosis.  We were still in massive a bit of denial but we did enroll Joe in a special needs preschool and sign up for a parenting course for parents of autistics.  Meanwhile I read everything I could get my hands on. 

Sometime that fall I read Let Me Hear Your Voice by Catherine Maurice.  The book was incredibly inspirational and really motivated me to get going on ABA.  At that time ABA was not being funded at all through the schools so we were looking at privately paying.  Needless to say, that can get pretty expensive pretty quick so we decided to do something we jokingly referred to as "high chair therapy".  We could still cram Joe into a high chair and it was an easy way to restrain him.  We got a handful of favorite snacks and tried to get him to imitate us or say certain things in exchange for a snack.  

He resisted at first -- big surprise!  In one of the early sessions, DH was working with him and Joe grabbed DH by the cheeks and pulled him in close as though to get his attention.  Then he smacked DH upside the head as hard as his little two year old arm could hit.  As DH said, "He might not have been talking, but he got his point across perfectly!"

Clutching foam letters & numbers at Discovery Zone.

We kept putting him in the high chair multiple times a day for several weeks and eventually this did turn out to be our breakthrough.  He went from 10 words to about 100 in the span of a week.  His pronunciation was still atrocious, but we were over the moon.

About six months after this, we started our home ABA program.  We were privately paying for it so we only did it for about 10 hours a week.  But this was the jackpot.  Joe could have been the poster child for ABA.  

His preschool teacher (whom we didn't tell about the program) stopped me one day as I was dropping him off and talked my ear off about all the amazing progress Joe had made during summer school that summer.  Um, yeah, that isn't to your credit that is due to the fabulous paras we have!  We did tell her at that point though that we had been doing ABA and she helped us to get partially reimbursed by the school district.

ABA was Joe's primary method of learning for a year or more.  One para taught him most of his prepositions in one afternoon by having him get "on" the table, "under" the table, etc.  It was fun for him and yet incredibly educational.  Another taught him his colors in exchange for her French fries.

And of course, DH and I learned so many "foolproof" ways to deal with autistic children that we couldn't fail when we had a second child with the exact same diagnosis, now could we?!?!?!

Driving Julie Crazy

Someone once gave me a small plaque that said "Whoever said you only go around once in life, never had carpool duty."  

The funny thing is, I didn't really mind carpool duty most of the time.  When Joe was in grade school we found another family with whom we meshed perfectly.  I didn't mind driving in the morning, but really did not like waiting in the after school carpool line.  The other mom didn't like getting up in the morning but didn't mind the after school drive.  It was a good fit.  We continued to carpool through two kids each and two schools and it always worked out well.

Unfortunately not all carpooling is so pleasant.  And when you throw special needs into the equation, things can get VERY interesting!

I had the kid that wanted to listen to his choice of music in the morning.  Sorry, kid, you want a happy driver and I get very edgy when I don't have my tunes.

I had the time that Alan was going to school a half hour away from home (and then I had to drop Joe off) before I could go home.  Naturally, as soon as I pulled into the school parking lot, Alan sprayed his breakfast all over the back seat.  Yuck!!

I had the little girl who would only listen to certain songs (and I had a limited number of them on my CDs).  I got to hear Lady Gaga's Just Dance song four times one morning because that was how long it took to get to school.  Thank goodness that was a close school!

I had the child wearing so much scented body lotion, I felt like I was attempting to walk through the department store perfume department.  Have I mentioned that I'm very olfactory sensitive??
  
I had the time that a police officer pulled me over and I was so happy that I had FOUR children with varying degrees of autism that were all sitting quietly and correctly wearing their seat belts that in never occurred to me that I might get a ticket.  He did give me one for "improper lane usage" (I got in the turn lane a little before it technically started) and it was all I could do not to ask him who pissed in his Cheerios that morning.

I had the child that used to insult Alan (although never when I was driving).  

I had the kid that unbuckled himself and leaned over the back of my seat to try to turn off my radio because he was going through a "silence" phase.

I had the time Alan's OCD required him to jump in and out of the open car door at least five times before he would get in or out to stay.  Naturally the other ASD boy we were driving decided he would do the same thing.

Then there was the time Alan sat ON another kid.  Luckily he had a sister who was at a similar functioning level and he just calmly said, "Alan, you need to get up."  He repeated himself several times but didn't get angry or upset.

Of course when Alan tried that with another boy, he shoved Alan out the door.

Nowadays I do a lot less driving of Joe so it is just Alan.  Camp started this week so I have been dealing with the afternoon parking lot crazies.  It is probably worse for me this year because I have a new car.  I am so worried I will end up like this!

Between buses that do not slow down when going through VERY narrow openings to the nutty parents and the pokey kids, it is enough to make me wonder if a medicine increase for the summer is in order.  That would be mine, not Alan's.

Summer, how do I hate thee? Let me count the ways ...

I know some parents that absolutely love summer.  None of them have special needs kids.  Coincidence?  I think not!
 
My favorite day of the year?  Usually the first day of school in the fall.  I saw this picture on Facebook last fall and fell in love.  Obviously staged, but still hilarious.  This could so be me.  

But as it is May not August, I have to content myself with enumerating the many ways I hate summer ...

1)  The heat.  Let's face it, I am of an age where heat is a problem.  I have hot flashes in December but they are seriously uncomfortable in July. 

2)  The humidity.  I live in a very muggy location.  If you walk outside, you start dripping.  Ugh.  The old adage of "Men sweat, women perspire and dancers glow" is BS.  I sweat and so do most people I know.  It is not a pretty thing.  Nor is it fragrant and I am very olfactory in nature.

3)  The clothes.  Let's just say I have a body best viewed with clothing ON!!!  Shorts, tank tops, etc. are really not that flattering.  I look much better in jeans and a sweater.

4)  The options.  What can you do if you are cold?  Exercise, put on layers, eat (one of my favorite activities) or snuggle under blankets.  Let's face it, sleeping in the winter is so much more fun!  What can you do if you are hot?  Sit in front of fan, drink something cool, or take off clothing (see #3).

5) My hair.  I have thick, curly hair.  I frizzes less if I let it air dry.  In summer that can take a while.  And it gets hot hanging down my neck.  But if I keep it short, I resemble a Poodle.  Sigh.

6)  The hours.  Alan used to always get up with the sun and go to bed when it got dark.  This has gotten better since he has become a teen, but used to always be a big reason I hated summer.

7)  The pool.  We live very close to a neighborhood pool.  It is noisy and frequently makes traffic a nightmare.  It is also a spotlight for how my children are different.  When most people have teenagers, they do not have to take them to the pool anymore.  They also do not have to supervise them because their teenagers do not swim where they are not supposed to swim or try to climb the water slide -- yup, Alan tried to climb UP the water slide last year!  And then of course there is #3.
 
8) The yard work.  To be fair, I do as little as possible in the yard (see #1 and #2) but it keeps DH busy more than the occasional snowfall in the winter and I happen to like to spend time with my hubby in the evenings.  At least Joe is helping out in the yard more.

9)  The absence of vacation.  This might seem like a weird thing, but we took our last family vacation last summer.  Alan tried to climb over the third story balcony on to the one below and tried to swim for the horizon (he's got a real "thing" about task completion) last summer.  This forced us to make the decision that it is just too hard to take him anywhere remote anymore. The problem is that I loved family vacations.  I don't think about it in the winter, but I sure do in the summer.  And it hard.

10)  The schedule.  Autistic people (and especially children) crave routine.  Routine goes out the window in the summer.  And summer school and camps are shorter than school hours.  I also have to provide transportation to camp.  All of which give me less time for my hobbies.  Selfish, but true.

To be fair, there are some perks about summer so I have to give them their due ...

1)  The hubby.  I get to see more of him because he takes days off work to help me out.

2)  The laundry.  There is just less of it in the summer.  The boys can wear two outfits on average every day and it just doesn't take up as much room as their jeans and sweatshirts do in the winter.  The only problem is that laundry is one chore I do not mind.  Figures.

3)  The colors.  I love looking at flowers.

4)  The light.  I actually do suffer from Seasonal Affectedness Disorder a bit.

5)  The food.  I have never been much of a veggie eater, but salad and fresh fruit?  Oh yeah!  And then there is ice cream.  'Nuff said.

Two graduations and some pictures

Joe is now out of high school.  He has a diploma and a lead on a job.  He opted not to go through the graduation ceremony and I am fine with that -- actually I encouraged that.  

 

We had a little party for him on Saturday -- mainly family and two friends.  His one friend, Harris, had a great time playing the miniature golf course with Joe.   






 

His cousin who came to visit played some ping pong with him the night before.

Alan's last day of 8th grade is today.  He had a little "graduation" ceremony on Tuesday and he didn't walk across the stage and wouldn't wear the hat but he happily accepted his "diploma".  

We are definitely going to miss his fabulous teacher although we are lucky enough to have her for summer school as well!



So life is good and calm in the Sparks household and there is nothing interesting to write about.




Of course as soon as summer starts I'm sure some things will crop up.  Meanwhile I thought I'd just share a few photos ...

Here are my "bookends" -- DH on his iPad and Alan on his hanging out in our bed relaxing!



 


And Alan combining two of his favorite activities -- sitting in the tree and chewing his toes.  I originally called it "Pedicure in a Tree" but a friend called it "Tree Yoga" and I think I like that name even better.






I'd also like to do a link up, but I am not sure how to do that.  So feel free to share your blog link in the comments.

Happy Thursday!

To Blog or Not to Blog ... that IS the question!

I am a classic youngest child.  I am a "peacekeeper".  By this I mean that while I have opinions on lots of subjects, I don't really feel the need to have everyone agree with me.  Many people who are very close to me think they know how I feel about certain topics and some of them are dead wrong.  If someone is on a political or religious rant I tend to either tune them out or try to see their point of view.  If their opinion is different from mine, I usually do not express mine at the time.  It is just my peacekeeper personality.

I started this blog late last year as a spot to vent about the boys.  I love my boys like crazy but they also irritate me at times -- what kid doesn't?  They are also a continual source of laughter and that was my initial goal -- to entertain the masses with their antics and if I found some other moms or dads with younger kids, maybe I could offer them some help, advice or experience.  I never wanted to deal with controversial topics.

I guess I should have considered my audience.

I read a lot of other special needs "mom" blogs and love them.  Even those that have very different parenting styles from my own still have a great love for their children and a funny point of view that I enjoy.  Sometimes I look at these blogs and think "thank

goodness Alan isn't still finger-painting in his poop" or "thank goodness I like the kids' schools and their teachers seem on the same page as we are" or even "thank goodness for DH, because he is a huge help!" and it helps keep me thankful for my lot in life.

On the other hand if I only looked at my Facebook feed (which is mostly moms of typical kids that I know from other walks of life) I might be having a daily pity party because everyone I know seems to have high school seniors and all I am hearing about are college plans and majors and I'm just hoping that Joe can get a job.

So I try to do a balance. I read about the struggles of other moms of special needs kids and compare my life to theirs and I'm in the middle of the pack.  Some have more "issues" and some have less but at least I don't feel like a freak.  Then I check my real life friends and can be genuinely happy for them.

But writing the blog is a different story.  I have recently wondered if I want to bother with the actual writing because people can be so mean.  For some reason people feel like it is fine to tell you anything they want (including how wrong you are) on your own blog.  A blog is by definition personal, so why do people have to be so hateful?

A mere two weeks ago before her life imploded, Kate from Chasing Rainbows wrote about the same thing.  I hope and pray that no one said anything horrible to her during her recent tragedy but I haven't had the time to go through all the multitude of comments to see.  I have seen an incredible amount of support and that has been very uplifting to me personally.

But during this same time frame I watched a much bigger blog (Single Guy Laughing) go though something similar.  To me, Dan is one of those guys with an interesting enough life (it isn't an endless downer, but it isn't all rainbows and unicorns either) and a fabulous talent for telling it like it is.  But wow, people just feel inclined to say ANYTHING to him just because he is a blogger.

After reading these two very different people have the exact same thing happen to them I got to wondering why I am "putting myself out there" as Kate said.  I am not making money on my blog.  It was supposed to be therapeutic.  So can't the same thing be accomplished by just reading other blogs and maybe commenting on their Facebook pages?  Is it therapeutic to be told you are wrong?

Then I considered my audience.  I was thinking that it would be mostly parents reading, but autistics do a fair amount of reading and writing of blogs as well.  Let's be honest, how flexible is the average autistic person?  Yeah.  I am pretty sure I have never won an argument with Joe in 18 years.

Unfortunately many of the more vociferous autistic bloggers do not like or agree with many autism parents.  Whether it is awareness vs. acceptance, Autism Speaks, a puzzle piece for the symbol of autism (really, is this worth debating?), the need to use "trigger" words, calling someone an "autistic" instead of a "person with autism" and whether or not it is OK to "hate" the disorder there are just a few too many divisions between autistic adults and autism parents for this peacekeeper.

I had pretty much talked myself into letting the blog die and then I got 3 new followers.  Huh.  To blog or not???

Do ya feel lucky?

When I was younger, my mom used to always call me her "good luck charm".  I did seem to win an inordinate amount of random drawings.

On our honeymoon, DH and I went to Bahamas which is a big gambling place.  We both came very quickly to the twin conclusions that we were not particularly lucky and we really hated losing our hard earned money in a game of chance.

When our first baby was born, people were still throwing around numbers like 1 in 10,000 for autism so our knowledge of autism was next to nil.  Of course to add insult to injury, Rain Man had only come out a few years earlier so what knowledge we had was skewed as well.

Of course by the time Joe was diagnosed they were using numbers like 1 in 5000 but still I had several people assure me that it didn't run in families.  If I knew then what I know now, I would probably have stopped there and I also think I would have been a better mother.

I was reading Stuart Duncan yesterday and while I normally love his blog, yesterday's post just grated on me.  In Don't fear autism and certainly do not fear your own child he says basically that parents are not having children because they fear autism.  He says we should instead reassure prospective parents.

Reassure them that they most babies are born healthy?  I think they know this.  I think if anyone is not having a child because they are afraid their child would have autism, they are simply not the gambling type.

In the case of subsequent children once one is diagnosed, personally I think this a good thing.  When you are at a high risk for something you should be allowed to consider whether that risk is personally worth it. 

When this generation of autistic children reaches adulthood, they will put a hell of an additional strain on the economy since most of them will not be functioning members of society.  If the 1 in 50 number is truly accurate, then at least 1 child in 50 will also need to have a career that focuses on the care of autistic adults.  That just boggles the mind.

Yes it is very possible (98% possible) that you will have a neurotypical child.  But a 2% risk to forever alter your life requires very careful consideration.

Could you be a good parent to a special needs child? 

Maybe these prospective parents know they are too selfish to give up their whole lifestyle forever if their child is severe.  Maybe mom and dad are both very into their careers and know that they could not make all the meetings that would be required.  Maybe they are struggling financially and have heard how costly it is to have a child with special needs.  Maybe their marriage is already rocky and the idea of raising a special needs child single-handed is daunting.

That is a choice.  Maybe they are just not gamblers.

Dorothy, I'm afraid we aren't in Kansas ...

Joe created a four foot tall puppet constructed out of pipe cleaners last fall.  It is actually a fairly cool work of art and craftmanship.  It is a (mostly) functioning marionette and he is extremely proud of it.  Which is fine.  He should be.

Unfortunately, his special ed teacher suggested he bring the puppet into school to show his classmates.  There is no way to get this thing into school easily.  Joe flat refuses to fold it or bend it in any fashion.  We tried to explain to him as gently as we could that it was possible that some of the other kids might make fun of it.

"Why would they do that?"

"Well, generally kids by the time they are 18 are in to more grown up forms of entertainment than puppets." 

"Well that is silly.  Puppets are cool."

Whatever.  This is the kid that came out of school one day in his sophomore or junior year with an ivy wreath on his head ("it's a crown!")  I give up.  I guess I need to pray for gusty wind every day from now until the end of the year or for kind high school students.  Which is more likely?

Grateful for a Diagnosis

I never thought I would say this (let alone think it!) but I am so grateful today for my sons' diagnoses.  

Joe is taking a class on Sex Ed from a local company that specializes in special needs kiddos.  Most of their clients seem to have MR or something similar, but they are working to branch out into autism.  Joe has taken a couple of art classes there and liked them well enough but he was always the highest functioning kid there by far.  When they came out with the info on this class DH and I were all over it.  Special needs kids are much more likely to be sexually abused than their typical counterparts and Joe is so naive about things (and uninterested in talking about them) that we figured this was perfect.  As well, there is a young lady at his school with whom he is quite smitten and we figured before we let him actually "date" he should have a clue about was and wasn't appropriate.

The first two classes were relatively uneventful and didn't prompt him to want to discuss things at all.  Sigh.

Then last night a new student walked in and lo and behold it was Tina, a girl with whom Joe had gone to grade school and upon whom he used to have an enormous crush!  They had e-mailed a bit earlier in the calendar year and upon snooping through the e-mails I became even more convinced that this kid needed some boundaries.  She "broke up" with him in April and at first he was quite upset but then he seemed to get over it.  This fall he became smitten with Helen and we were thrilled.  Helen is a sweet girl and seems just Joe's speed and we always thought Tina was waaaaaaaaaaay over Joe's level.  

So Tina's mom called me last night to talk about the fact that both kids were in the same class and she told me a little bit about why she had enrolled Tina in the first place.  Yikes!  Tina was meeting guys at a local park after telling her parents she was going to church youth group and so her driving solo has been cut.  She was sexting and meeting guys in online chat rooms and several other dangerous behaviors.  But ... since she doesn't have a formal diagnosis (other than ADHD) she doesn't qualify for a lot of the services that they are now trying to get.  

The whole conversation made me so thrilled with some of the choices we had made for Joe over the years.  We opted to send him to a rather large public school with a lot of support instead of a small private school like Tina attended.  He has done the work program through school and has been accepted into the vocational job placement program upon graduation.  He has participated in a volunteer program for the last few summers and was told by one of the volunteer sites that they were likely interested in hiring him after next summer if he worked that hard again.  We hope to enroll him in the community college in the fall and have him take a couple of classes to hopefully improve his future employ-ability.   In general, his outlook looks good.  Maybe he doesn't have a scholarship like some of his typical peers and maybe he isn't even going to attend a four year college, but he is happy, mostly trustworthy and generally a good kid who will most likely be gainfully employed within a few months of graduation.   

Overall, his future looks so much brighter than Tina's mainly because of his diagnosis and the choices that we made that got him the support he needed when he needed it.  There but for the grace of God go I ...

IEP's ... the Good, the Bad and the Ugly!

Individualized Education Plans (or IEPs) are something every parent of a special needs child has attended.  Being in my 26th year of special education parenting (15 for Joe and 11 for Alan), I have attended more IEPs than I care to remember.  Some are good, some are hideous, many are frustrating and some are a complete waste of time. Today's was Joe's transition to adulthood/post secondary education.  It was both good and frustrating. 

The SLP (Speech Language Pathologist) brought up the fact that when Joe gives an answer to a question and it isn't exactly the correct answer, he struggles with constructive criticism.  OK, to be fair, NO ONE likes constructive criticism, but it is a fact of life.  When Joe was younger, his response when he was angry was to take off his glasses.  I think this originated from the girl in A Series of Unfortunate Events tying back her hair when she was inventing, but I am not positive.  He doesn't always do that these days.  Most of the time he just goes to the bathroom.  This is actually better as it gives him a chance to get away from the situation and calm himself down.  Unfortunately, this might interfere with competitive employment (our post-secondary goal) as he can't exactly run off from his boss to use the restroom every time he is told how he could improve. 

Still, overall, Joe's outlook is so much brighter than Alan's that sometimes it is frustrating.  While I spend a lot of time wondering if Alan will have to be institutionalized, I only have to worry whether or not we will have to support Joe for the rest of his life.  

One of the worst IEPs I ever attended was when Alan was in first grade.  First a little background as to the events proceeding the IEP in question.  

Alan was always a big "headbutt-er" and he got away from his aide one day in October and went up to a gen ed teacher and headbutted her.  When I got the phone call later in the day, all I was told was that he had "headbutted a pregnant teacher".  What is everyone's first thought when they hear that phrase?  It is of a child (at the exact right height) running up to a woman 6 months or more pregnant and slamming his very hard head into her stomach, right?  I was appalled and horrified!!   It wasn't like this was a new behavior!!  Although there was no Behavior Intervention Plan at the time.  I was still a bit upset that he received a one day out of school suspension and a four day in school suspension -- not about the in school portion, mind you, only about the out of school portion.  First off, this happened more than 24 hours after the actual incident.  These kids need instantaneous feedback.  Second, a day off school is a reward.  Why in the world do they give the child misbehaving a day off school?!?!?

The actual IEP was even more frustrating.  Luckily my DH showed up and did the larger portion of the debate as I would have been too upset.  This is the approximate conversation:

DH:  Why did Alan get an out of school suspension for this incident?

Principal:  We need to keep our teachers safe.

DH:  So why give him an OOS suspension when that is essentially a reward for him?

Principal:  Well we need to keep our teachers safe.

DH:  I understand that but how is reinforcing a behavior going to help keep your teachers safe?

Principal:  We have these laws and rules to keep our teachers safe.

<sigh>

I am just glad I had left the IEP by this point, or I might have headbutted someone myself!  The end result was the principal decided that Alan was never to leave the autism room unless he was accompanied by two aides.  They didn't hire another aide so what would you do as a teacher?  Send Alan into a classroom with two aides and keep two students back in the autism room or send two students out with individual aides and keep Alan back in the autism room?  Needless to say, Alan didn't get into gen ed much after that and we switched schools at the end of that year.

As a postscript on this whole event, I found out at the Winter Party that the teacher in question was headbutted on the hip and that she had only just found out she was pregnant!!  Not only could Alan probably have headbutted her on the stomach without hurting her, but it wasn't like he was targeting the pregnant lady -- which was the impression I received the entire time we were discussing the incident during the IEP!

Keeping that fun IEP in mind made today's seem like a dream!  Really how bad is it that Joe has to leave a meeting to go to the bathroom?  Not so bad at all ....

Intro

I am honestly not sure who will read this, but I am using this blog also as therapy.  

For those who do not know me, I have two sons with different forms of autism.  

Joe is almost 18 and fairly high functioning.  He just got his driver's license and talks incessantly, but there are curious lapses in his comprehension and he is literal to the nth degree!  He is a senior in high school and he is mainstreamed for a couple of classes and in a special ed class for the remainder.  He is the darling of the special ed programs because he is so high functioning, but he is just a little shy of being able to even make real friends.  He sees almost no need for calling, texting, e-mailing or even getting together with people outside of school.

Alan is 14 and a much bigger challenge.  He is sweet and affectionate at times, violent at others and completely self absorbed at others.  He loves to climb.  He has a smattering of words (mostly nouns), some echolalia and a lot of vocalizations!!

My husband and I are both engineers by degree but I have been a stay-at-home mom since Joe was born.  At times I have really wanted to go back to work, but someone has to be available after school and since my husband's job is much more demanding, that someone has been me.

I have several hobbies and they have been my sanity saver of late.  I also like to read, but have done very little of that lately.  I will however mention it when I read a great book or see a good movie.

The reason for the title of the blog is that at a recent family gathering we were discussing trees and I mentioned that we had a Bradford Pear tree that didn't bloom for about 10 years.  At one point and time, my hubby and I used to like to joke that we had the special needs kids, the special needs cat and the special needs tree.

(Note:  The original title of the blog was "Specializing in Special Needs" but I changed it to "Life with the Spectrum")