"I'm Sorry"

I have heard so many times from special needs parents how much they despise the words "I'm sorry" when it comes to their children.  Well, I'm sorry, but I don't get that one.  What would you rather people say?  "Congratulations!"???

There isn't a person alive that thinks when they are pregnant "oh I hope I get a special needs child!"  But that doesn't mean we don't love them all the same.  Now there are amazing people out there that choose to adopt special needs children and all I can say is "Wow!  More power to you!"

But when it comes to a child you gave birth to or that you adopted not knowing their issues, I think "I'm sorry" is a fine thing to say.

A person that says "I'm sorry" isn't saying "I'm sorry that your child was born."  They are merely saying "I'm sorry you have these difficulties."  Some days, I feel sorry for myself, too!  Other days I am pretty thrilled that I don't have typical kids.

Usually when I hear "I'm sorry" it is because I am trying to get some form of accommodation (like no waiting at the doctor's office) so I just say "thank you" and move on.  Occasionally I hear it when I am catching up with an old friend and I am explaining why my 18 yo high school graduate is not looking at colleges.  Then I usually respond with some snarky comeback like "well at least I don't have the tuition payments you have!"

On the other hand I do get tired of people telling me what therapy to use or how I should parent.  I'm sorry, but live at my house for a week and then make your snarky comment about how unhealthy my child eats.  Do you honestly think I don't know that it is unhealthy?

So for all those parents out there that despise "I'm sorry", I'm sorry, I just don't get it.  There are a lot bigger issues out there.

Another one bites the dust ...

Alan is so hard on his clothes.  We just bought him all those cute shirts a couple of weeks ago and two of them are already ripped ... and I'm not talking a tiny hole!

Today (before he ripped it) he was wearing the t-shirt that says "Yes, I'm autistic and a blessing to those that get to know me."  We were out shopping and one of our stops was at the supermarket.  We also get our prescriptions filled there and I was making my monthly pick up plus a few extras since I am having foot surgery on Wednesday.  Alan was pushing the cart and just kept pushing it past the pharmacy to the checkout lanes.  I could hear him jabbering and cooing but I couldn't see him.

When I finished at the pharmacy, I walked as fast as is socially acceptable to get over to the checkout lanes.  I was very curious what he would do.  Turns out he got in line but didn't go so far as to take the items out of the cart although he was up to the cashier.  The young man running the checkout lane smiled at me and said, "I really like his shirt.  I'm on the spectrum too.  I have Aspergers."

As Joe would say, the good news is that the shirt was seen and appreciated before it was torn.  Hmm, I wonder how I will patch this?

Joe-isms

Joe comes out with the funniest observations on life.  Mostly I've just shared them on my Facebook page and with family, but I decided to collect as many as I could remember and put them in a blog.

I was dressed all in purple one day and Joe told me that I "looked like a plum."  Since he likes plums, I think it was a compliment, but it is always fun to try to translate the autistic mind.

He told me earlier this year that he hoped if he had kids that they were more like him and not like Alan because "Alan is just work, work, work, work!"

Joe took one look at this house (across the street from Alan's camp) and said, "That is really unsafe.  Alan could NOT live there."  (In case you can't tell from the picture, there is a second floor door that opens to a porch roof and there are no handrails.)

Once Joe's homeroom teacher had been out sick for several days.  When she saw Joe on her first morning back she said, "I really missed you, Joe!"  His response?  "Well I managed to do just fine without you."  Luckily, she laughed and he amended it, "Well, I mean, it is good to have you back, too."

One night when we had Chinese for dinner and my fortune was something like "Your house will always have peace."  Needless to say, this gave DH and I quite a chuckle.  When we stopped laughing, Joe says, "That will never happen!" in a very matter of fact voice.  Another night there was no fortune in my fortune cookie and Joe decided that meant I was "unfortunate".

A few weeks ago, when I mentioned to Joe that I had a stomachache, he asked me if I thought "I might be getting pregnant."  (At that moment?!?!)

When I had a minor fender bender less than a year after totaling my previous car, Joe wanted to know if the new car survived.  (No query on me, I guess he figured I was walking and talking so I must be fine.)  When I told him that yes the car would be fine, it just needed a little repair, his response was, "Good.  Because I thought you were going through cars awfully fast."

Most parents try to prepare their child for the world.  I think I might have to prepare the world for my child!

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?