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.

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.

Trying to look on the bright side

Today is Joe's last day of high school.  When I was younger and so much more naive I used to dream about this day.  "If only I can get him to graduate then _________" (fill in the blank).  Now that I am older and wiser, I realize this is just another twist in the road.

A few months back, Joe was accepted into the VR program at his school.  This is a program that aims to get special needs graduates employed after high school.  They take them on several job assessments and the goal (as I understood it) was to find a company where Joe wanted to work and could be successful as well as a company that wanted Joe.

So why, did the assessor take him to places that he didn't want to work?  Why did she spend so much time telling me why the employer wouldn't want Joe?  If the employer is that difficult to work for, why is she bringing potential special needs employees there?

Most of her complaints against Joe were rather minor.  She tells him to put some cans on a shelf.  He says "Are you sure that is where they go?" and she thinks he is undermining her authority.  Really?  Has she ever talked to an autistic person in her life??  Joe questions everything.  That is just the way he is.

She claimed he was too negative.  This is a legitimate claim against many on the spectrum.  But not Joe.

This is the child that when my sister's cat ran away, he tried to console my sister that she still has another cat.  When I'm running late and am wearing my workout clothes, he tells me that "at least you had a chance to take a shower" when actually I didn't.  When my car was totaled it was "at least we still have two other cars."  This young man could be the poster child for looking on the bright side.

To the age old question of "Is the glass half full or half empty?" Joe would probably respond "The important thing is that you have a glass!"

So now I am facing graduation with an unemployed 18 year old.  I am terrified.  I am sure he will eventually work somewhere although hell will freeze over before I let it be the sheltered workshop she thinks he needs.  The kid drives for crying out loud.  Okay, deep breath mama bear.

At least I have Joe.

Exceptional?

We had Alan's transition meeting yesterday since he is starting high school in the fall.

Overall it was a great meeting.  His current teachers obviously love him, the high school teacher was very positive about his recent communication break through (switching to "Go Talk Now" on the iPad) and DH and I were praised as "exceptional" parents.

So what is my gripe?  If we are "exceptional", then I think most parents are missing the boat.

The sort of things that got us praised were silly things -- the funny Christmas card with all his goofy climbing pictures, keeping after the doctor until we got a good medicine mix that would control his OCD and programming and using the communication iPad.  The last item the speech therapist went on and on about for what seemed like 10 minutes.

That was supposed to be the condition of getting a communication iPad from the school -- that we work with him at home as well.  After all, that is the goal, right?  Not just to have him communicate at school but at home as well.  So why is that unusual?  Shouldn't all parents make the time to take pictures of food choices and his favorite videos and restaurants?

I only spent an hour or so programming it and I really thought I should have spent more time on it.  But the SLP kept gushing about how much I did.  That just seemed a little sad to me.

Those three magic words

What three words are music to a parent's ears?  Most people would say "I love you!"  Don't get me wrong, I would love to hear them from either of my boys -- and have them mean it, not just parrot it -- but I sometimes think my favorite words are "Your prescription's ready!"

OK, not really, but I do have a close, personal relationship with my local pharmacist!  I walk up to the counter and the pharmacist (or any of the technicians) says "Oh hi Mrs. Sparks, are you here to get this month's supply?"  I am so anal-retentive that I have all our family's 11 medicines renewed at the same time -- heck, otherwise I would be up there twice a week!

The boys are on an assortment of meds and we have certainly had our shares of mishaps along the road (The Case of the Missing Medicine) but currently both are in a good place.  I won't say great, because that will change as they grow.

About two months ago Alan's OCD was out of control.  It took him 5 minutes to get off the bus in the afternoon.  He had to walk back and forth, recite scripts from various movies and just "think about it" for quite a while.  We changed one of his meds a couple of weeks ago and yesterday he was off the bus in less than 30 seconds!  Yeah!!!!!!

Today he has the day off school.  Now to see how he behaves out in public as we run errands.  Wish me luck ....

Camp Weekend

Before last November, DH and I could count on one hand the number of nights we had spent alone together without the boys.  As I stated in one of my earlier blogs, we do not have grandparents that are able/willing to watch the boys.  We are lucky enough that my sister who lives nearby will take them occasionally, but realistically, they are a lot for any one person to handle so we do that very sparingly. 

Then in the summer of 2011 a flyer came for a special needs camp.  Figuring that Alan wouldn't like it and they wouldn't like Alan, we signed Joe up for the camp.  It is two weekends in the fall and two weekends again in the spring.  Joe was very nervous about attending, but ended up really enjoying camp.  As a time to be away from mom and dad and deal with other strangers to get his basic wants and needs met, it was a huge growth opportunity for Joe and probably a big contributor to his massive emotional growth spurt of the last year.

One of the counselors who knew about Alan asked me why we hadn't signed him up.  When I explained that I thought he was a little much for the camp, she told me that the camp was really designed for kids like him.  Huh.  Really Joe is the highest functioning kid there by far.  So when the flyer came this past summer I had all the paperwork and the deposit check filled out and in the return mail.  I was so excited.  I really didn't think Alan would do well, but I was so ready to try.

Then we found out that there wasn't enough funding and no new campers were going to be added this year.  Well sigh.  The first weekend came, Joe went and Alan stayed home.  It was still good for Joe to get some independence so we weren't going to deny him the weekend away.  Then the coordinator contacted us again and said they got additional funding and now Alan could do the second camp of the fall.  We tried to take him to the intake meeting and he refused to get out of the car to come into the building.  NOT a good sign.  What to do, what to do???

DH and I came up with an elaborate plan.  Joe and I would drive to the camp with all the supplies for both boys stopping on the way for French fries and a soda which we would bring to the camp.  DH would follow bringing Alan.  DH got there and parked next to our van.  Alan saw it and said "Get in van" (we've done enough car swaps in parking lots that this is a relatively familiar routine) and hopped out of DH's car.  DH promptly locks his car and I already had the van locked.  Now there is no place to go but into the camp building.  We settled Alan down with the fries and his soda and his counselor and ran like cowards!  OK, maybe we didn't run like cowards, but that is sort of what it felt like.

We went home and waited for the "come get this kid -- he is driving everyone crazy" call that ... never came!  Late Saturday afternoon we got a text with a picture and Alan was happily climbing a pine tree on the camp grounds.  Joe wasn't being forced to watch over his brother and everyone there was happy.  DH and I were ecstatic!!!!

So Alan's second weekend was this past weekend.  We packed Thursday night and Alan didn't seem to be paying attention but then his teacher e-mailed us on Friday to tell us that he was having a bad day after a great week.  Not good.  Had he seen the packing after all and known what it meant and was determined not to go?  We debated endlessly what would happen if we couldn't get him out of the car or something similar. 

Friday after school Joe was doing his usual "I'm excited but I'm not going to admit it" pre-camp thing and Alan seemed oblivious.  Moment of truth time.  DH lies down in bed next to Alan where he is watching his iPad and tells him "you are going to camp this weekend" to which Alan replies "No!"  DH tries a few more times with the same results.  OH-Kay!  Then DH says, "Remember you get French fries when we go to camp."  No more No's.  Hmmm. 

We even drove two cars again but we also hoped that since the first weekend was so successful that this one would be even better and luckily it was.  Alan actually started saying "Get in car!" to us this time. For a little while we weren't sure if he was asking to get in the car himself or telling us, but since he sat quietly while we got in our cars and left, we figured it was the latter.  The counselor informed us that there was much less yelling this weekend since he knew the routine and he seemed to have a great time. 

Now our only concern is that Joe doesn't really need a "special needs" camp anymore.  He even got an award that said "Junior Counselor" this past weekend because he led the cake baking activity and according to his counselor he was great about making sure everyone got to participate and understood their job.  Hmmm, maybe next year they will hire him on as a counselor and we will still get our weekends??

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 ....