Tuesday, April 30, 2013

Joe as "Miss Manners"

We went out to lunch as a family to a sit down restaurant on Sunday.  This isn't something we do often.  We go grab fast food and we are carryout pros, but all four of us going out to eat is just something that doesn't usually happen. 

We didn't go anywhere fancy -- just a sports bar/restaurant that we had tried before.  There were no local games on TV and the place was pretty much empty which is how we prefer it.

Alan was doing his usual "happy noises", we had gotten our food and it was turning into an enjoyable outing.  Alan decided he had eaten all the fries he was going to for this visit and so he began his "clean up" which is basically him transferring his fries to another plate so he can get the last bit of salt off his plate.  This is usually accompanied by a "no" or two.

Joe sighed (that exasperated sigh that only a teenager can do) and said "He really shouldn't talk that loud!"  Really?  This from the kid that stage whispers loud enough in church for people 3 rows away from us to contribute to the conversation? (OK, not really, but he isn't quiet by any stretch of the imagination!)

Alan's "no" wasn't that loud and we were in a noisy place.  We just pointed out to Joe that Alan doesn't have a lot of words and he wasn't yelling and we thought it was fine.

"Well, I just don't think he should do that.  It is sort of rude."  OK.  The king of etiquette has spoken. 

Finally it is time to leave and we are collecting our things and Joe says in his normal dulcet tone, "Just a second I have some ear wax I need to clean out of my ear." 

Clearly he and his brother are subject to different rules.

Friday, April 26, 2013

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 ....

Sunday, April 21, 2013

Wednesday, April 17, 2013

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???

Monday, April 15, 2013

Second Breakfast

As with many other things, autistic children span the gamut from those that have to be coaxed to eat all the way to those that eat like Hobbits.  Then of course there are the ones that seem to never gain weight to the severely overweight.  Both of mine are more the latter in both respects.  Some of it is medication related and some of it is just genetics.  They are big boys and they like to eat!!!

Alan's OCD has been out of control lately to the point where it takes him upwards of 5 minutes to get off the bus in the afternoon.  While this might not seem like long, if every kid on the bus obsessed as much as he does, the last kid to be dropped off would be a good hour later getting home.  Most of my neighbors seem fairly understanding about it and the bus driver is good about pulling in the stop sign while Alan is doing his routine, but it still drives me nuts (which is admittedly a short trip.)

In an effort to speed him up, we have been changing Alan's meds.  Unfortunately that resulted in him waking up two hours earlier than normal this morning.  <yawn>  I shouldn't complain.  I know a lot of people with kids on the spectrum have kiddos that hardly sleep and in general mine are pretty good especially Joe.  But I happen to be one of those
people that really likes my sleep and gets pretty darn crabby without sleep so I am less than agreeable today.

At the moment we have more than an hour before the bus gets here and Alan has already had two full breakfasts.  At this rate the kid will have consumed his entire daily caloric intake before 10 am.


Thursday, April 11, 2013

Keeping things in perspective

We have ants in our kitchen.  It is gross.  I'm not talking a couple dozen ... I've killed several hundred (probably over a thousand) in the last two days.  But really, what does it matter?  My children, my husband and I are alive and healthy.

Most of you that follow other special needs blogs are aware of the struggles of the Leong family at Chasing Rainbows.  Kate (the bloggess mom) is almost always fantastically upbeat for the lot she has been dealt in life.  But right now with her older son fighting for his life and the doctors not even sure if there is any brain activity she is struggling.  She is actively begging for prayers so if you are at all religious, please take a moment to do just that.

But back to the ants, the last time we had them was several years ago and they were in the basement by the cat's food.  It was still gross, but it was the basement and it was the cat's food not ours.  This time they are in the kitchen.  I can't figure out where they are coming in but they are everywhere!  But no, this is not really a picture of our kitchen floor.

Tuesday morning Joe woke me up with, "Mom we've got ants in the kitchen!" and when I went in there I discovered them all over the floor near Alan's dropped food.  OK, I should sweep that up every night but he drops so much so often that even with sweeping twice a day (or more) there is usually food on our kitchen floor!

Then Tuesday afternoon I discovered them on the counter (grosser!) and swarming all over the cat's water bowl.  Poor Diesel!  I did my usual baby powder on every flat surface and they were still everywhere.

Then a friend suggested Terro Ant Killer and I was a lady on a mission.  I bought some of their bait stations yesterday and set them out and that got quite a few of them but not all.  Today I am going out to buy the stuff that actually kills them.

This morning Joe asked why I didn't just spray some bug spray.  I tried to explain to him that you can't spray it in a kitchen because of the food.  "Can't you just spray it everywhere else and not on the food?"  Um, it isn't quite that simple.

But while ants may be gross, they aren't life threatening.  And back to the poor Leong family, little 5 year old Gavin is fighting for his life.  I had read about Kate's struggles on Facebook and commented on FB and DH saw my comment and read her blog.  He normally only reads mine and the ones I specifically ask him to read, but he read enough of hers to really sympathize.

Then last night at bed he summed it up quite nicely, "It sure puts ants in perspective!"  Yep, it does.

Tuesday, April 9, 2013

What's in a Name? or Our Tree is a Mutant

This whole blog (not this post, mind you, but the BLOG) started with a visit from my parents.  I was lamenting the fact that our Bradford Pear tree never bloomed and I followed it up with "We have the special needs kids, the special needs cat and the special needs tree!" which my mom thought was hysterical and I thought would be a good launching point for a blog.

I started off calling the blog "We Specialize in Special Needs" or something like that but realized it made me sound like I know more than I do so I changed the name.  Of course now I've read so many other blogs with such catchy titles as "Even the Dog is Autistic" and "Flappiness is ..." and "The Status Woe" and I am once again dissatisfied with my blog name.  Also if you are looking for us on Facebook, we have another name and that is Julie's Boyz Blogspot.  Clearly I have name issues!

Yesterday Alan was out climbing in our Cherry Tree (no this is NOT our special needs Bradford Pear although you can see it behind Alan's head) and I came to the conclusion that this tree must be a mutant.  How in the world does this skinny little branch hold this heavy guy???  I will admit that it flexes a good 6" at times when he is moving around, but it is still incredibly impressive.

At least when he lays on top of the swing-set I can understand how it does not collapse. 

Nothing really interesting to say today, just a great picture (courtesy of DH) of the mutant tree.

But I do still have a strong urge to change my blog's name, so maybe I should call it "Our Tree is a Mutant" or "Even the trees are special needs".  Naaaa, I am not sure how to get all the links straightened out so it will remain "Life with the Spectrum". 

Friday, April 5, 2013

Autism mom snaps after filling out her thousandth form ...

There is a very common saying in the autistic community, "If you've met a child with autism, you've met A child with autism."  I get that, really I do.  They are all so amazingly different.  Heck, even my two with the exact same diagnosis (PDD-NOS) from the exact same gene pool are nothing alike.  What was a bear with Joe, Alan picked up in a matter of days (potty training).  What worked like a charm with Joe had no affect on Alan (ABA therapy).  That is life with spectrum.

Given all this, I do understand why all the forms exist.  Every time I have to sign either of the boys up for camp, therapy, an art class, school, or whatever I get a form to fill out.  Most of the questions are fairly straightforward.  Even typical parents get inundated with some of these forms.  I have my sister's contact information as well as the pediatrician's and both dentist's phone numbers pretty much memorized.

And many of the other questions, I understand why they must exist because all these kids are so wonderfully different.  But when it comes time to enroll Alan for summer camp -- which he has attended at the same place for at least the last 5 years (and I think more), I have this urge to get sarcastic (who, me?) on some of the questions.

Is your child toilet trained?
What I want to answer: Well, he gets in the bathroom, but frequently not the toilet.

What I answer:  Yes

What are his favorite outdoor activities?
What I want to answer:  Climbing on the neighbor's deck rail and walking across the cross beam on the swing set. 
What I answer:  Swimming and climbing on the jungle gym.

What are his favorite indoor activities?
What I want to answer:  Chewing his toes, riding his scooter off the climbing platform in the basement and scaling the stairwell like a monkey.
What I answer:  Playing trains, computer and watching videos.

What activities does he dislike?
What I want to answer:  Pretty much everything else.  
What I answer:  Paper/pencil activities and arts and crafts.

What physical, diet or medical restrictions does your child have?
What I want to answer:  The list to the right.
What I answer:  Only self imposed.  (Hey, sometimes sarcasm IS the truth!)

Does your child experience obsessive behaviors? What item/activity triggers this compulsion?

What I want to answer:  Hell, yeah!!  Everything!!
What I answer:  Yes.  Stairs and doors are the biggest triggers -- use ramps wherever possible.  Frequently new things are ritualized quickly.  Try to introduce new things in various manners.

How does your child communicate?

What I want to answer:  He yells and verbal stims constantly.  (Isn't that communication?)
What I answer:  Single words, mostly nouns.

What does your child do when upset?
What I want to answer:  He turns into a miniature tornado.
What I answer:  Yells, swats, thrashes, flips chairs, headbutts, etc.

What interventions or calming techniques help your child?

What I want to answer:  Nothing really.  Just ride out the storm.
What I answer:  If possible, leave him alone to work out his anger.  A "break" spot has been effective at school.

What self-stimulatory or self-injurious behaviors does your child exhibit?
What I want to answer:  He will yell "NEE-WAH-JU-BEE" in a rap format in the exact pitch so that it sounds like fingernails on a chalkboard.
What I answer:  Lots of verbal stims and yelling.  He will also pick at his fingernails (and toenails if he can get to them) until they bleed.

Probably just as well I keep most of these snarky comments to myself, don't you think?

Wednesday, April 3, 2013

Awareness vs. Acceptance Part 2

Not too surprising, but I got a few negative comments about my last post Awareness vs. Acceptance but I could understand her point.  The comments were from an adult autistic who doesn't see herself as "broken" and frankly, neither do I.  As Temple Grandin says you do NOT want to get rid of all the autism genetics. 

But unfortunately Alan is in the severe category or at least further in that direction than moderate.  I am terrified that we will have to institutionalize him at some point in the not too distant future.  His brother is 6'1" and over 225 lbs. and I am not positive he has stopped growing.  Considering that Alan was a bigger baby, odds are he will easily be big enough to cause some serious damage around the house and hopefully, it will be the house that suffers and not DH or I.

For this reason, I will continue to hope and pray and search for a "cure".  And maybe cure is not the right word.  The boys do not have a disease, but something is definitely wired incorrectly in their brains -- something that I would dearly love to "fix".  This is tempered by the fact that I love quirky people!  They are so much more interesting than social 'yak yaks'.

Maybe the answer is The Serenity Prayer. Some things will never change and I need to accept that and yet if I can find a way to change Alan's most difficult issues, I need to have the courage to change that but I must also have the wisdom to know when not to mess with things and that is probably where Joe lies.

So I still say that I want Awareness and Acceptance.  Is that so freaking much to ask for?  Well, yes it really is.  Baby steps, Julie, baby steps!