Choices

When I look at Troy's school website I see a Flash-based photo album scrolling through the achievements and activities that occur over the course of the year.  What I do not see; however, is Troy.  No, I am not complaining that he is not being featured in the "popular" or even "good" kids lineup.  My heart aches for the things he misses out on simply because of who he is. 

Troy has a difficult time fitting in, as most Junior High School children do.  I want to stress the word "children" because it is worth noting that that is what they still are, despite their seemingly insatiable desire to portray themselves as anything but. 

Troy has had difficulties in every school he has attended (nine at last count).  He is so high-functioning and puts forth such a great first impression that initially or at some point along the way he is inappropriately mainstreamed.  That is when the trouble starts.  Once the teachers realize their mistake (I wasn't going to say "I told you so," but seriously, I have so consistently warned administrators about this it is almost funny to see it play out.  Only it's not.), the damage is done.  Troy has damaged his reputation by seeking sensory input one too many times, argued with classmates or teachers, or just plain said the wrong thing.  It is at this point that all bets are pretty much off that he just might make a friend this time.

Troy is, in fact, his own worst enemy.  He does and says things that just don't shake out the right way.  Then he wonders why he feels so alone.  Once he feels that the world is against him, what could possibly motivate him to reach out to others?  Yet he does, time and time again.  He must be my child after all.

Today found me parked outside the furthest temporary building from the school, my heart wrenched inside out.  Troy has done something he knew to be wrong and is paying for it.  Big time.  I will forgo the details of how he ended up here, but he is spending the next six school days in the almost-alternative-school setting called Choices.  Yesterday was his first day.  Yesterday, when I was so sure this type of punishment might just be the thing to shake him up enough to make better choices in the future.  Yesterday, when I thought he would wear his shirt tucked in and be subjected to the solitary confinement of a desk with cardboard blinders.  But yesterday he came home afraid.  He was pushed around, name-called and antagonized like fresh meat on a junior high version of Oz - the HBO one.

Still, as he is going to high school next year, I can't help but feel it is an important experience for him.  I cautioned him this morning about keeping his head down, speaking only when prudent, trying to pull from all of the advice being offered to those entering the prison system for the first time on any television show I have ever seen.  Most importantly I told him to talk to the adults and find out what their expectations were for how he is to react when others think no one is watching.

We do not live in a high-crime environment.  This is the junior high school I attended 25 years ago.  It is not Candy Land, there are still people who want to be thugs or delinquents.  And these are those who are in the Choices program with my son.  My son who trudged to the wooden steps like they were gallows.  My son who wore his non-graphics shirt tucked in with a belt and his ID on his noose of a lanyard.  He waved at me several times while I waited for him to be let in the building; something I wish he hadn't done as it might label him a mama's boy, of which he is absolutely guilty.

Watching those boys who gathered to be security wanded and let into the building at precisely 8:55, posturing themselves to be aggressors, strutting and cursing and bragging about sexual conquests (yeah, right, I thought), I couldn't decide if I should be afraid of them for Troy's sake, or grateful to them.  For all the things I could not teach this boy, there has usually emerged someone to help when I needed them most.  His dad happened to not be deployed during a particularly crucial stage of potty training, but over the years there have been a handful of neighbors and friends who got us over humps of throwing a football, riding a bike and growling the occasional "Man up, Troy" that this mama just didn't have the wherewithal to muster.  In a cosmic way, I would like to think that these children that Troy will spend the next week with will guide him to where he needs to be in order to survive high school, and for that; so long as they do not physically harm him or emotionally scar him for life, I salute them.  Maybe they even deserve to be featured on the school's Flash-based photo album.

I Live In The Future

Today I rediscovered that I attempted to start a blog in 2008 to cope with the ongoing stresses of raising a child who may or may not have Aspergers.  It was to be the outlet I needed for collecting information and inspecting probable misinformation, and maybe experience a bit of comic relief.

Over the past four years many things have changed, but as we all know, much has stayed the same.  For instance, I now know better than to alternate link colors with red and blue and I also know that I am only supposed to space once at the end of a sentence.  The former I am somewhat horrified that I didn't already know better and the latter I am somewhat stubborn about adopting.

Aside from acknowledging that I neither am nor ever was a hardcore blogger with mad communication and design skills, lots of other things have evolved in my life since I last hammered the keyboard with my confusion and angst.  My son does have an official diagnosis of Asperger's Syndrome, as well as ADHD but I have started hearing things like "personality disorder" and "sociopathic tendencies."  My family has moved five times and experienced divorce, but also great personal growth and the surprise of new relationships.  Wonderfully functional relationships!  I have returned to school and am nearly finished with a Bachelor's degree in Interdisciplinary Studies (the preferred major for nomads the world over) with plans to enter a Master's program in Library Science.  Yay me!  

I think I will continue to refer to my son as "Troy" but since I never got around to saying much about his sister, we will go with "Tillie" for her.  It sounds like a great fictional name for such a girl.  In 2008 the main concern was to keep her safe from Troy, in 2012 she is as much a part of the story as the rest of us.

Looking back on one particular post, I can say that Troy is still "angry/resistant boy."  I don't know what happened to my copy of the book the description came from, but wow, finding a copy is on my list of things to do today!  Parenting Your Asperger Child: Individualized Solutions For Teaching Your Child Practical Skills.  How could I have ever put that book down?  Shame on you, past me.

Another interesting thing that has happened over the past, well, since the last summer Olympics, is the number of people whose lives have intersected with mine who needed to talk, learn, teach or just watch what is going with our lives.  It is a lonely life, but it isn't.  It is easy to spot those who want to share and beautiful when it affects us all. 

46th Annual Kansas CEC Conference

The Autism Society of America hosts the 46th Annual Kansas CEC (Council for Exceptional Children) Conference

Geary County Convention Center, Junction City, KS
October 16-18, 2008
Contact: Kansas CEC Secretary: Anita Oelke, aoelke@nkesc.org
Kansas CEC Member $100, Student/Assoc. Member $70, Non-member $130
Proposal Submission Deadline: N/A
Website: http://www.kansascec.org/index.html

Exhibitors to Include:
BUENO Center
Pearson Assessments
Firelight Books
Kansas Parent Information Resource Center
Families Together
Ten-Sigma
Spring Hills Schools USD 230
Institute for Excellence in Writing
Psychological Assessment Resources, Inc.
AIMSweb
Child and Adolescent Outpatient Psychiatry Clinic at the University of Kansas
Horizons Mental Health Center - Hutchinson
Riverside Publishing
The Why-Try Organization
Kansas Association for Gifted, Talented and Creative
Midwest Equity Assistance Center
Hampton-Brown
The Jason Project
Continental Press
Seedling Publications

Do you ever get tired? I mean, really tired?

So, today I finally heard back from Children's Mercy. They say they are not taking new patients due to the fact that their waiting list is so long (14 months).

I told the lady I didn't care, to go ahead and put us on the waiting list. She didn't. Instead she launched into a speech (that she has no doubt delivered more than once), about how as a military family we would likely not be here in 14 months anyway. As if that weren't enough of a slap in the face (we have been trying for five years to get help for this child) she said that the people on this end who said he needed a neurological examination didn't know what they were talking about; that we need behavioral psychology to make the diagnosis.

Here are the contacts I was given today:

FAMILIES TOGETHER
http://www.familiestogetherinc.org/

501 Jackson, Suite 400
Topeka, KS 66603
Phone: 1-800-264-6343 (KS parents)
(785) 233-4777 FAX: (785)233-4787
E-mail: topeka@familiestogetherinc.org

NEUROLOGIC DISABILITIES SUPPORT PROJECT
http://www.ksndsp.org/

Neurologic Disabilities Support Project
Mail Stop 3055
University of Kansas Medical Center
Developmental Disabilities Center (DDC)
3901 Rainbow Blvd.
Kansas City, KS 66160
Email: jtyler@kumc.edu
Phone: (913) 588-5943
Fax: (913) 588-5942

THE CENTER FOR CHILD HEALTH AND DEVELOPMENT
http://www.kumc.edu/cchd/
The University of Kansas Medical Center
Mail Stop 4003
3901 Rainbow Blvd
Kansas City, KS 66160-7340
Tele: 913-588-5900
Fax: 913-588-5916

AVNER STERN, PHD
http://www.bhsks.com/article_detail.asp?ArticleID=8
Behavioral Health Specialists
8400 W. 110th St., Suite 230
Overland Park KS 66210
(913) 906-9559

RESPONSIVE CENTERS FOR PSYCHOLOGY AND LEARNING
http://www.responsivecenters.com/
7501 College Blvd. Ste 250
Overland Park, KS 66210
Office: 913-451-8550
Fax: 913-469-5266

NEAL DEUTCH, PHD
8575 W 110th ST # 326
Shawnee Mission , Kansas 66210
Phone: (913) 345-2727

KIDS CONSULTS OF KANSAS CITY
Dr. Dawn Bloom
6315 Walnut St
Kansas City, MO 64113
816-926-0642

VALARIE KERSCHEN, MD
(Developmental Pediatrician)
Wesley Pediatric Faculty Clinic
(316) 962-2080 3243 E Murdock St # 200
Wichita, KS

HEARTSPRING
(Dr. Kerschen works from this organization at times)
http://www.heartspring.org/
8700 E 29th St N
Wichita, KS 67226
(316) 634-8750

MAKE A DIFFERENCE INFORMATION NETWORK
'Serving Kansans with Disabilities in One Phone Call'
http://www.makeadifferenceks.org/
(800) 332-6262

and finally, here is the contact information for the social worker I talked to today:
CHILDREN'S MERCY HOSPITALS AND CLINICS
Susan Bushman
(866) 512-2168 (ext. 3699)

Sensory Bottles

For a few months now I have been working on building a site for kids crafts (Quality-Kids-Crafts.com). Arts and crafts have always been a part of my life. I grew up in a family with four (very different) girls, and we each had and still do have our own way of expressing ourselves. We also have a brother, but he came along much later, so he is waaaaay cooler than we are!

When I first came across Sensory Bottles -or Discovery Bottles as they are sometimes called; I was working for a non-profit organization developing curriculum for a child care and preschool environment. A teacher workshop had a make it and take it craft night and from there many new ideas have managed to take root.

Until very recently I had not heard of Sensory Integration Dysfunction, or Sensory Integration Therapy. When I learned of this, I knew these bottles would make great sensory integration activities.

The bottle pictured here is the Calming Bottle. It is filled 1/3 to 1/2 of the way full with light corn syrup and has mylar confetti shapes added. While it is not as cool as a bubble tower, it is something you could make together at home, it will probably cost around $1.00 to make and is portable.

So, feel free to check out the page for other ideas.

Subtype: The Emotion Boy

Today hubby and I (what I mean by "hubby and I" is that I found it and read it out loud while he pretended that he was not falling asleep) came across an article that perfectly describes Troy. I am certain that Troy is the type of child to whom Michael Savage must have been referring in his recent rant (not that I am fond of giving him any more press than he has already had). Ignorance.

Here is the description of my child; the one people see in the store throwing a fit in the dairy section because it's too cold. This is the child that an associate in the garden department of a certain supercenter suspected I was abusing because I made him hold my hand (nevermind the fact that he had been climbing on store shelving, oh, or did he not see that part?) and the child who was forced on a regular basis to stand on a square and watch other children on the playground because he was not "on task" in the classroom - even though he had an IEP in place...

Angry/Resistant Boy
This child or teen may look similar to the paranoid type, but he is less adversarial and less intense. He is also easier to deal with if and when he feels safer. He argues about everything, and almost anything can lead to a tantrum of some size. At times, he can be violent and physical or will destroy property. He wants things to go his way. He wants to control situations and has his own rules about the world and how things are supposed to be. He is often diagnosed with oppositional defiant disorder (ODD). This is another child who doesn't understand the way the world works and becomes anxious as a result. He feels threatened by others and thinks they are trying to control him or are being unfair and arbitrary. He needs to fight with them to gain control and get things straightened out to his way of thinking. However, his arguing does nothing but further aggravate the situation. His rigidity, lack of understanding, and disuse of logic prevent him from seeing this clearly. His emotions determine his actions.

Yes, this is the child who has been repeatedly failed by the medical "system" that may get him an appointment within 6-9 months with a neurologist. This is why the ignorance of those who have no business judging my child (or any other child for that matter) is more than a minor annoyance; it undermines the authority of those of us who try every day to feel like we have done SOMETHING right for the puzzling child in our life, and cheapens the efforts of those who truly understand the struggles faced by those with Autism.

Yeah. That was what I have been trying to put into words.

Military Doctors... Sheez! (Just GETTING the Appointment)

So, I mentioned that Troy's therapist is in an ongoing state of "ruling out" Asperger's Syndrome. I kind of understand her point of view when she says that "Autism is sort of a "heavy" diagnosis for a kid." Well, it is, but living with a child who is living with Autism but does not have an official diagnosis is kind of heavy for a mother with no family close, whose husband is in Iraq, who struggles with depression... Sorry. It's not about me. But it kind of is.

If I cannot receive the kind of assistance that parents of Autistic children clearly need (any support of any type would be beneficial) then how can I raise my neurotypical child and my "ADHD r/o AS" child. Most days I don't know what the heck I am doing.

So, at the end of my rope I called the military medical facility where we are seen, to once again try to get a referral for neurology. Here is how that went.

Me: "Hi. I need to get an appointment for my children to have school physicals done, and I also need a referral for my oldest child for neurology."

Appointment Line Representative: "Well, you will need separate appointments for a school physical and a referral, since the medical assistants who do the school physicals are not qualified to give referrals."

Me: "Okay. So, when is the soonest I can get in to see a primary care manager, because I know Dr. A has moved on to another place, and Dr. B who was supposed to be his replacement is gone now, too - per a conversation I had last week when I tried to schedule this appointment."

Appointment Line Representative: "Oh, Dr. B is not gone. He is still here. He just is not taking appointments anymore."

Me (not surprised at this answer at all): "Okay, whatever. So when can I schedule an appointment for my child to be seen by a PCM? "

Appointment Line Representative: "We don't have any appointments for PCM's, but I can get you in to see a medical assistant next week."

Me: "I thought medical assistants couldn't make referrals?"

Appointment Line Representative: "Oh, they can. Just not when they are doing school physicals, because they are only scheduled in ten minute increments."

Me: "Okay, then. Let's just go ahead and make the appointment and hope for the best."

Appointment Line Representative: (Laughs audibly)

We did end up getting the appointment scheduled. I will write later to tell you all about how it went. Let's just say for now that the medical assistant for the doctor's assistant who saw Troy should NOT quit his day job.