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.

Hannah Poling: Autism and Vaccines

Here is an article from Time Magazine published Monday: March 10, 2008.

Hannah's parents Terry and Jon Poling (who also happen to be highly respected medical professionals) took on the National Vaccine Injury Compensation Program - and won.

Until recently; I was unaware of the fact that such a program existed, but sure enough - those little handouts they give you when your child is immunized has the information right on there.

For the record: I am grateful for the scientific advances of medicine. I am happy to know that leeches are a thing of the past (at least in my culture). I am thrilled that doctors no longer prescribe turpentine for the treatment of anything!

I know the possibility of a connection between vaccinations and Autism has been blamed for unexpected outbreaks of Measels in certain areas. Here is someone else who knows a little bit about that: Dan Olmsted of the Daily Web Newspaper of the Autism Epidemic: Age of Autism.

That was all I really wanted to say about this.

Inaugural Post of the Obligatory Nature

So, here's the story. In 1998 I had the most beautiful baby boy. I kind of had my heart set on a girl, but hey, you take what life gives you. He was healthy, happy, silly and a joy. Truly.

At about 14 months, he changed into a screaming, crying, angry, difficult child. My husband (US Army) was in the field for a month and when he came home he couldn't believe the change in our child (we'll call him "Troy," because that is not his name).

While we lived in Germany, Troy attended the German Kindergarten. In many ways this was the best time of our lives. Troy was different because he was American, not because he was... well, different.

After starting the American schools, the teachers began noting Troy's "differences." We transferred him from one Kindergarten classroom because the teacher was basically an old grouch. She would not allow the children to play with any of the classroom materials because they were new and she did not want to see them get broken or damaged.

In the new classroom Troy was often in trouble for socially inappropriate behavior (mainly wiping his boogers on his friends' nap mats). His teacher approached his father and me saying that she was concerned because Troy was so different from his classmates. She cited the fact that he liked to smell everything as her main concern; mentioning that whenever they cooked a snack he wanted to smell it. This did not seem strange to me, because I like to smell things, too. She added that the first thing Troy did when reading a book was to open it and take a big whiff of it. Again, this was not an oddity to me, as I knew that all children develop differently and I also (still) love the smell of a new book.

Of course, I have been described as "quirky" and "out there" and even by a neighbor who lived across the hall at one point: a "nutjob." Now, I agree with quirky and unique sense of humor, but the nutjob lady was just mean.

Anyway, back to Troy. First grade was not easy for him. He always had lots of homework because he could not concentrate in class, so he had to bring all of his work home. Being a highly irritable child; Troy was not entirely open to the idea of being at school all day and then being expected to cooperate in the completion of his homework. This translates into: Mom got yelled at a lot, and sometimes kicked in the shin.

In the second grade Troy was referred to his pediatrician for ADHD evaluation. The doctor peered down at me over the frames of his glasses and said: "You DO know that ADHD is hereditary, don't you?" Well, actually... I didn't know that. I was over 30 years old before finding out that Attention Deficit Disorder was a part of my makeup. Surprise!

So much more happened during those times, but I am trying to keep this brief, as I am interested in moving forward with this blog! In a nutshell, we have tried many different types of medications for Troy, he has been seen by therapists, psychologists, psychiatrists, physician's assistants, teachers, administrators, and whoever else happens to be on shift when we have an appointment (military doctors are not exactly the most stable).

Fourth grade was just the worst for our family. Troy's teachers were extremely uncooperative and while it was the first time we were able to obtain an Individualized Education Program (IEP); the program was not followed correctly and our family encountered an incredible amount of opposition from Troy's school in trying to meet his needs.

Troy's diagnosis is Combined Type ADHD while attempting to rule out Asperger's Syndrome. It is my goal to confirm or completely rule out (although I am pretty sure it will be confirmed) AS and move on with whatever resources we can obtain in order to ensure that Troy has every opportunity to become a successful and happy individual.

So, that is what this blog is all about.