I Try

I wonder if some might read this blog thinking…."Why does she think she can say [anything] about Autism?"  I would say to them,  "I'm just a mom who has had family members with the disorder, an ex-spouse with the disorder, and 2 children with the disorder."  I want to share information and what I know or what I have found out.  Occasionally, I have information that can help someone.  And I like to help.  That's why I'm blogging.

Sometimes I try to be helpful on the Autism Networking sites.  I think that might get me in trouble.  Especially when people have such strong opinions about the disorder and how to treat it, how to talk about it, and how to do anything about it.  I post articles, videos, a study……make a few comments I think are non-bias and all the sudden everyone has claws out ready to go.  So, maybe I'll save those for my blog.  Hopefully I won't inadvertently offend anyone here.

I just emailed one of my son's old therapists in Utah to update her on his progress.  I wonder if therapists get annoyed with updates, or if they like to know how they have affected a little life.  They definitely have an effect on my life.  And I will never forget them.

Hare Loss

Life with 2 kids on either side of the spectrum is interesting.  I've mentioned my son a lot but my daughter, not so much.  She's brilliant and reads everything she can get her hands on.   I caught her reading this article in the magazine "Mind Floss."   Thank heavens she didn't ask me any questions and "the Easter Bunny" can pay a visit on Easter.  I was glad that didn't add to my stress which is literally causing me hair loss.  It's sad but true.  The lady at the wig store was very nice.  Her name is Susie at Wells Wigs Unlimited. 

Alphabet Song

I cannot say enough good about Building Bridges and ABA therapy.  My son was not talking....now look at him!

Other's Shoes

 I wrote this today as my status on My Autism Team.

"Eh, today is one of those days.....I'm tired of the battles I can't EVER back down from or I can't keep control of my child(ren), I'm tired of diaper changes every 2 seconds, I'm tired of fighting to spoon feed 3 times a day, I'm tired of being pulled EVERYWHERE every 2 seconds, I'm so tired of NO ONE waiting for me to use the restroom for 2 seconds, I'm tired of the financial hardships with no health insurance, I'm tired of going to the store because there's no one around to do it....I just...I cry "UNCLE"!!  To life!!  It's a pity party day.  I know we ALL have them.  Type some words to vent, get virtual hugs and continue on our life path that is so overwhelmingly rigid."

I try and write more informational posts.  I don't really like to "gripe" write because there is always someone who has it worse than you.  After I posted my whining, I was going to delete it, but a gal who has a 16 year old ASD son wrote on it.   Her story is that her 16 year old ASD son, had caused her problems within 10 minutes of her waking.  He's still not independent and she's still battling bathroom issues and feeding issues, as she has for the last 14 years.  Wow.  It puts things in perspective.  I feel bad for complaining.  The one thing I have going for me, at least for another couple years, is hope.  Hope I can get him as close to normal as I can before his developmental window closes.

It is true though.  Autism life IS rigid.  The kids, as all kids do, need routine.  But, the problem with our ASD children is that they are completely inflexible.  They get into routines that become outright rituals that MUST be done or their world will come apart.  I remember how bad my daughter was, but it's nothing like my son's is becoming.  He has started one such ritual, it begins with him screaming once we come inside the door, and progresses to him taking off his shoes, crying, bringing them to me and asking me, in his sounds, "help please" to put them back on.  I've waited SO LONG to hear words.... I totally cave at his request full well knowing I've just reinforced the negative behavior.  But I wanted to reinforce the words........
Some days, you just can't win.

That's Kind of Cool...

I was quoted in a blog today from the co-founder of MyAutismTeam.....

the article is here.

That was kind of cool.

Signs Your Child Might Be Autistic

I'm frustrated.  I spoke with an old friend today.  I asked how his boy was doing.  He told me things like, "my child is two but not talking, like the other kids are", "my child has a short attention span...of, like, none" and "my child doesn't seem to want to play with other children."  "My child", says friend, "is a little slow to start speaking, socializing, but it will be okay."  What I want to do is scream....."get them help NOW!"  Those ARE the signs your child is having issues and may, more than likely, be Autistic! 
I admit, even I was in denial at first, thinking, "ya, he's slow, but I have a feeling he'll be okay."  The developmental discrepancy didn't seem that bad, at two, but as time went on, and the other children were stringing sentences together while my child had no words, I started to panic.  It was also when I learned about developmental windows.  The reason doctors and educators test children for milestones is because, if they don't hit those milestones by certain time periods, you lose the ability to teach them those skill sets.  The greatest time of brain development and growth comes in the early years of childhood.  That is why everyone [doctors, educators and Autism organizations] are pushing early detection and early intervention.  The kids have a much better chance at more normal, higher-functioning lives. 
So that is where I am today.  Frustrated, feeling completely powerless to warn people.  That is why I'm writing these thoughts down.  So maybe someone, somewhere will stumble upon my words and get their child the help they need sooner.  If you are one of those people, please check out my post on "Autism.  What You Need To Know."  It's a list of things I wish someone had told me to do when my son was 2.  We're doing great, and I'm glad I have him in ABA therapy and a small social preschool class at Building Bridges, but, how much farther could he be had I known then what I know now?
The other thing people need to know is that Autism treatment is expensive and many of us are going into great amounts of debt to get our child the help he or she needs.  If, laws were introduced to force the insurance companies to pay for treatment, everyone's premiums would go up by an average of 1% which starts controversy.  "Why should I have to pay for someone else's child?"  Well, I'd rather pay that extra 1% than the extra taxes it's going to cost to fund all of these Autistic children who are lower functioning because their parents couldn't afford the help they needed to get them higher-functioning and able-bodied tax paying citizens by their developmental windows.
It's all a train wreck unfolding before our eyes.  Thousands of children will turn 18, needing Social Security and State and Federal social programs in order to live.  All of us in the Autism world can see it.  Why can't everyone else?  Well, one day they will.  Then who will they blame?

Walk In The Park

A walk in the park.

I don't think I've said much about the negative aspects to having an ASD child.  Especially one on the moderate to lower end of the spectrum.   A lot of times having ASD children is not a "walk in the park."  Unlike the fun my son and I had at the park today.

Lately I've been dealing with a very inconvenient, annoying, loud, aggressive behavior.  Every time we come home, from the park, therapy, shopping, my son doesn't want to leave the car.  For a while I was carrying him up the stairs as he kicked and screamed to get him into the house, staying calm and talking to him about how "we have to get out of the car" and "we will go in the car again."  Then, I tried a different approach by leaving him in the car (don't worry, it's in the climate controlled secured garage) with all doors open so he could walk into the house when it pleased him.  This has not worked either.  It has, however, allowed me some free time to blog and/or clean.
I've thought of all the possible causes....sickness, chronic ear pain, getting the process of "out of the car" in the "wrong (according to my son)" order, not letting him try to undo his seat belt, not letting him close doors, not letting him push the button to shut the garage door.......I've thought of and tried everything I can think of.  Now, I'm back to thinking the bad behavior is ear pain and taking him to the ENT tomorrow.  If that's not it, it's typical toddler behavior that I need to address with some kind of discipline or incentive.  If you do not have an ASD child, you will not understand this.....you can't scold, yell, "time out" or otherwise negatively discipline an Autistic child.  They are stubborn as a goat and they will win.  My success has been either being more stubborn than my child, or using an item as an incentive to do what I need him to do.  For example, my son has gone from a crib to a bed.  When it was "night night" time, I put him to bed, left the room, went downstairs to suddenly find him walking down after me.  I finally resolved this issue by staying upstairs, hidden behind his bedroom door, and every time he began to wander out, I directed him back in.  It's taken a while but he will stay.  As for my son's incentives, it's usually an electronic device like an iPod, or cell phone, or other digital toy.  Hey, you do what you can.