My boyz are growing up (and up and up and ....)

Both my boyz are going to be tall.  That has never really been in doubt.  With hubby just under 6'1" and myself at 5'8" and both of the boyz over 9 lbs at birth, we just knew they were going to be big. 

Now Joe has hopefully stopped growing at 6'3" (but maybe not since he went through his growth spurt late) and when I took Alan to the doctor earlier this week he is 5'7".  So within the next year I will be the shortest one in the family.  (I have been the lightest weight for over a year, but that is another story!)

And while their physical growth has been fascinating for mom to watch, it is their emotional maturity that is the subject of today's blog post.

The boyz have both AMAZED me just this past week.

First off, there's Joe.  I took him to the psychiatrist yesterday and he told the doctor that although he frequently had trouble understanding what people meant when they said or did certain things, most of the time I could explain their motivations to him.  Now maybe that doesn't sound like much to the outsider, but that is huge around here. 

Joe is one stubborn kid.  He is always convinced he is right even when you clearly prove him wrong.  As the parent from whom he inherited most of his stubbornness, I can vouch for this!  We usually butt heads on almost every topic under the sun.  DH is forever telling me to "stop arguing with him!"  Most of the time the truth is subjective so neither of us is necessarily right or wrong but when the truth is pretty obvious, I admit to digging in my heals.  I am usually better at interpreting behavior from body language or circumstances than Joe but to have him acknowledge that fact unprompted was hugely gratifying.  I think most of us have a hard time expressing when we are wrong or deficient in some way, but it does help us grow.

He also continues to do well in his job and likes it!!  He also started work again at the weekend camp and was remarkably dedicated about getting all his paperwork submitted for re-employment.  Proud momma moment here!  He is trying to save money to buy one of our cars so he has stopped going out to lunch every day he can.  This is also rather mature of him.  I'm thinking we can release guardianship for him very soon which makes me incredibly happy.

And then there is Alan.

"Wow" doesn't begin to cover it.  He has been back in school almost three weeks and he hasn't had one "bad" day at school.  There have been "incidents" that they've reported (he didn't want to participate in PE but eventually complied, he couldn't get a soda when out in the community and was very disappointed but dealt with it, I forgot to pack a snack one day and the only things they had available didn't appeal to him, etc.) but nothing major.  They have even told me repeatedly that he is a "role model" for other students.  DH read the note that came home yesterday and said, "Does he have an identical twin around here that you've been hiding from me?"

And at home, he has been good too.

He doesn't have many chores around the house mainly because it is too hard to teach them to him.  But we've been trying to come up with more.  We have been having him take the kitchen trash out to the garbage after we tie up the bag but we always had to tell him to do this.  Then last week I left a bag out (both boyz were in different areas of the house) and Alan came into the kitchen first and took the bag out to the garbage without being asked.  The other thing we have been having him do is sweep the floor after he is done eating -- especially when he has popcorn and leaves little bits all over the floor -- but it has always been a struggle with lots of vocalizations on his part.  This morning he finished breakfast and went out to get the broom without being asked. 

Who is this kid?  Did I have twins and not realize it?

While this is a lot more of a bragging post than I typically write, I did want to let other parents know that it DOES get better.  Joe grew up a lot during high school but he continues to grow now as a young adult.  Alan is just starting to go through the high school maturity and it gives me so much hope.  I still know that he will never be able to live independently and that saddens me.  But when you spend so much of your life in fear of what will happen when your autistic, minimally verbal, occasionally violent child is bigger and stronger than you, it is very nice to know that he might not have to go into an institution but can at least stay here with us.

My little boyz are growing up.  What will I write about now?  I guess my minis ...

When "failing" is good

Joe had his first "real" job interview yesterday and he didn't get the job, but we've changed directions and everyone is happy about that.

Last spring, we had talked to the lead counselor at the special needs camp that he and Alan attend in the hopes of finding a way for Joe to attend camp without wasting a counselor on him.  (DH and I did not want to give up our "kid free" weekends!!)  The counselor knows Joe and when we talked to him he suggested the possibility that they could in essence create a position for him.  The camp folks really came through and late this summer, they hired him as the Assistant Arts & Crafts counselor!  Best of all it is a paying job.  Joe was very excited when he got his first paycheck!!

All decked out and ready to go to "work"

In addition to that, Joe is volunteering one day a week (for 3 hours) at a local hospital.  He also starts today volunteering two days a week (again for 3 hours) at a nursing home and he had been volunteering at a thrift store as well (which does not need him for the rest of September since they are doing an inventory) but he should be able to return there in October.

Any of the three volunteer positions could potentially lead to paid employment and frankly, that is the sort of job where Joe will shine.  He already had a very favorable review at the hospital where he has only been for two months.  I am sure the nursing home and thrift store will quickly realize how helpful and smart Joe is without him having to worry about first impressions. 

Sounds win-win to me!

But back to the failed interview, he had applied for several "bus boy" positions and this interview was with one of the restaurants.  When they called to ask him to come in to interview, the manager told me they were primarily interested in weekends.  I told them about the camp, but according to the manager "we could work around that".

Of course his definition of "working around that" was to have Joe quit his camp job (which he likes a lot) for a job he might not like.  Um, no.  Not going to happen.

So yesterday afternoon his job search woman, Joe and I had a long talk and decided to temporarily abandon his job search. 

This morning Joe came downstairs and informed me that since this was going to be the way of things for awhile he was going to start setting his alarm so that he could be sure to get up on time for his "jobs" (he had been relying on me to wake him up on time). 

I couldn't be happier that he didn't get the "real" job yesterday.

I never wanted autism

I never wanted autism. 

There I've said it. 

Now I've probably pissed off any adult autistics that actually read my blog and possibly some of the parents.

Still it is true.  When I was pregnant I didn't think "I hope my older son has a hard time making friends.  I really hope my younger son still talks in single words at 15 years old.  I want a family that can't go over to the grandparents' houses because the younger one cannot follow simple rules.  I want to spend every family gathering taking turns with DH sitting outside and watching the younger son climb trees.  I want to still be explaining basic idioms to my 18 year old.  I want to stop taking family vacations when Alan starts having meltdowns on the beach.  I want to stop certain fun family traditions because my 14 year old won't go out in the dark." 

Does anyone think these things?

But as soon as I say "I hate autism" people jump all over me. 

I really find it hard to believe that anyone wants this life.  Don't get me wrong -- if they ever would find a cure, I would not force ANYONE to take it.  I would discuss the options with Joe at length.  I think he would chose to take it, but if he said "no" that would be that.  Of course so much would depend on side effects that even discussing the possibility is sort of foolish.

But I get so frustrated by the "neuro-diversity" crowd that thinks we do not need a cure.  Maybe they don't.  But I do.  I want to unlock the mystery inside of Alan's brain.  He is so cuddly and affectionate and has such an infectious giggle but he also has a blood curdling shriek that I don't understand.  I try.  I come up with all sorts of interpretations, but I just do not know what he wants some days.

Trust me, I get that life isn't fair.  DH and I regularly joke about that.  Most of the time, I laugh about our life.  After all, it is inherently funny to watch some of Alan's climbing activities.  But when he is wrecking our house and trying to climb on the electrical fixtures and the heater because we aren't letting him outside to climb, it is a little less funny.  When he was going through his "poop smearing" phase and we were cleaning his room at least every 24 hours, that was definitely less funny.

I am terrified quite regularly when I think of the future.  I have a child that will need life long care.  What happens when I am not around to provide it?  My older son cannot care for my younger one.  Both DH and I are the youngest in our respective families.  That means all aunts and uncles are older than us.  What happens when Alan is a 30 year old adult and everyone around him is 60+?  He can already overpower me and he is still (marginally) smaller than me.

When I said that Kelli Stapleton did the wrong thing but I wanted to understand it, I was criticized.  Someone said that anyone that thought like that didn't want an autistic child.  That in fact, they wanted a neuro-typical kid.  Um, yes.  Actually I do want a neuro-typical child.  Two of them would be nice.  I love my boys with all my heart and soul, but I don't want them to have all the struggles they do.  If some people believe this makes me a bad parent, then so be it.

I've never claimed to be perfect.  Far from it, as a matter of fact!  The popular expression is "love the sinner, hate the sin."  Well, I love my autistic kids but I hate their autism.  That is just the way it is.