Time and Tide . . .

Wow . . . I had totally forgotten about this blog. Little Joe has lived with his dad since last August--following the "running away" incident. It has been a rough year without him . . . BUT--I don't hear the fat lady singing yet! Life has been weird over the past year, but I'm going to try to write again--maybe my experiences will help others to cope with similar situations. I also plan to share some of the resources that helped me to cope. So check back soon if you are interested . . . ;o)

Non-word of the day: ridiculapity

I know, I should be sleeping. But I can't . . . I haven't been sleeping well since Little Joe's incident last week. And now one word keeps going through my mind. One non-word, that is.

ridiculapity

Huh? I know, it isn't a word. So where did I hear it? Well, I was on this cruise to Alaska in early May (not the one that tried to sink), and I went to this stupid comedy show (seriously). During part of the show, the host asked the audience for three words--a noun, an adjective, and a verb, if I remember correctly. Anyhow, someone yelled what sounded like "ridiculapity," and they used that word, even though all four comedians and the host kept saying "is that really a word?" I think the person in the audience yelled "radiculopathy," but it doesn't really matter now. Ridiculapity is firmly etched in my mind, word or no word. And I think it describes my life at the moment, Oui? It's a new word with a singular meaning.

Ridiculapity: Life with Little Joe.

Someone tell Mr. Webster. Ridiculapity.

[Photo credit --No, Jerry Seinfeld was not on this cruise . . .Gosh.]

Exhaustion follows . . .

Wow, the events of last week have really taken a toll on me--I'm totally exhausted. It amazes me that I can summon such strength at times--I wonder how I do it. Does it stem from my faith? Is it an extension of motherly love? Self-preservation? Wherever it comes from, it is followed by intense physical and mental exhaustion.

Not only am I exhausted, but I also feel disillusioned. And I am hurting . . .

I love Little Joe so much. I don't understand how or why he is the way he is. I want to believe that everything will be OK in the end. I remember when my hugs could heal anything--I wish it were that simple now. I wish we could all wake up and realize that this was all just a nightmare and that Little Joe is just an average little boy. I wish . . .

To read:
The Bathtub Is Overflowing but I Feel Drained: How to Defeat Mommy Stress

[Graphic credit]

Time Bomb

For the first time since I began blogging in early 2005, I'm not quite sure where to begin. If you have read my unfinished series, "The Long Haul," then you know my Little Joe had to change schools after a medication change led to worsened behavior. I'll continue this series in the next few days, focusing on IEPs and communications with the new school. However, we recently (yesterday) experienced a traumatic event that has pushed me up on my soap box yet again. Frankly, I'm scared. Terrified even.

So what happened? It started with a phone call from the principal at Little Joe's new school. The principal explained that Little Joe had flipped off (using both hands) his teacher following an awards assembly. She had taken some items away from him that he had been playing with during the assembly. The principal explained that Little Joe would be suspended for one day. I agreed with his decision.

Following the phone conversation, Little Joe had a Vacation Bible School volunteer meeting to attend at church. When the meeting concluded, Little Joe didn't want to leave. He ran and hid--finally, I was able to get him into the car.

In the car, Little Joe disowned me, and claimed that I was no longer his mother. No big deal? Not yet. I phoned his father and had him talk to him because he was claiming that he would move in with Dad. My daughter, Blue, and I listened to Little Joe describe me as his kidnapper and call me Mrs. _____. At this point, it was actually humorous. Seriously!

It was no longer funny when we arrived at our home. Little Joe continued yelling at me, telling me he hated me and he didn't have to listen to me anymore. He started removing his belongings from his room, along with a sleeping bag and pillow, and dragging them across the driveway. He continued his tirade.

I decided to call the crisis line at this point. I didn't even understand why he was so oppositional, so hateful. All I did was make him leave church when his meeting was finished . . . A counselor on the crisis line explained that a mental health crisis team would be contacting me and coming to our home to help with the situation. I waited and waited as the situation grew worse. The call never came; the team never arrived. Thirty minutes later, I called again and was met with confusion from the other end. An hour later, Little Joe decided that he was running away, and off he went. He hiked up our driveway and ran along the sidewalk of a very busy street--I was following him and dialing 9-1-1. He ran into an apartment complex and tried to hide in the bushes. Then he ran back to the busy street and was running on the sidewalk again when the police car arrived. The police officer turned his lights on, stopped the car, and ordered Little Joe to stop. Little Joe screamed at the cop and started running away. This didn't go over well with the police officer, who chased him down and restrained him. Little Joe continued to struggle while the police officer said "I don't want to hurt you, you need to calm down." Little Joe didn't calm down and continued to struggle. I watched while Little Joe was face-planted and hand-cuffed because of his maniacal behavior. This was one of the worst experiences of my life. Then the officer had to call for back-up because Little Joe was still struggling. Soon, there were three cop cars and three more police officers surrounding us. Little Joe was placed in the back seat of one of the police vehicles where he continued kicking and screaming.

The conversation that occurred at this point is a blur to me, but one of the police officers called for an ambulance to take Little Joe to the local children's hospital. However, when the ambulance arrived, Little Joe calmed down and just wanted me to hold him. I opened the door and held a sweaty, dirty Little Joe while he sobbed, saying "Mom, I'm sorry--I just want to go home."

When I told the police officers that I wanted to take him home, I got the butt-chewing of my life. A young, bald cop yelled at me and explained that by taking him home, I was letting him know that he could get away with this behavior and that all would be well if he cried for mommy--this was an extremely long butt-chewing, but I'll spare you the details . . . But he was right; he was so right. I had to let them take Little Joe to the hospital in the ambulance. I explained to Little Joe that he had two choices: get into the ambulance voluntarily and ride like a man, or ride restrained. Little Joe chose to go voluntarily. Everyone waited while I ran home to get my car.

I was exhausted, but I thought that maybe, just maybe, we could finally get some real help. I was wrong. This is the scary part--there is nothing anyone can do (especially in my state) for adolescents with mental health issues. Basically, the emergency department keeps the child until he/she calms down, then the child is sent home. The mental health folks won't even get involved if a child is violent--they leave the violent ones to the police. If this continues, Little Joe will eventually be taken to the juvenile correctional facility instead of the hospital. I can't let that happen. The social worker explained that recently a boy was brought in and held for 17 hours while they tried to place him in a mental health facility. They searched the entire state and couldn't find a facility to take him, so when he calmed down, they sent him home. She said that we are not alone . . . The social worker, the doctor, the nurse, were very supportive, but their hands were collectively tied because they couldn't admit him, and there is nowhere to send him for help. The encouraged me to bring him there anytime he is violent and oppositional--that was all they could offer.

The other advice I received from the police and the social worker is to call 9-1-1, bring him to the hospital, follow up with the doctor diligently with every occurrence--in case he harms someone either at home or at school. They were telling me to cover my ass because Little Joe is my responsibility, and I need to be able to show that I did everything humanly possible to prevent such a tragedy. I want to actually prevent such a tragedy--I want to help Little Joe to lead a happy, productive life.

I have written before that I worry that Little Joe may be the next perpetrator of a school shooting (no, I don't keep any weapons in my home--even my kitchen knives are placed high in cupboards), that I want to help him before we get to that point. When these tragedies occur, folks point fingers at the parents. You know, it isn't always the parents. We need to point fingers at our society--at our current lack of mental health options. The mental health crisis people didn't contact me until we were already at the hospital. The said, "so you have things under control now?" I don't think so. The social worker explained that they are understaffed and underpaid. Insurance companies limit mental health compensation. It is as if it doesn't exist--it doesn't merit a visit with a professional. There was such a public outcry over the Virginia Tech incident, over the Columbine massacre, but where are these people when the parents of the individuals are reaching out and asking for help?

Something needs to change? Will you help me facilitate these changes?

To read:
Preparing for Crises in the Schools: A Manual for Building School Crisis Response Teams

[Graphic credits: time bomb
handcuffs]

Fifth Grade Health

Me: Little Joe, you need to finish your health worksheet . . .

Worksheet Q #5: What changes do girls experience during puberty?

Little Joe's Answer: They get boobs.

Me: Can you think of another word for "boobs?"

Little Joe: Hooters?

(Where does he get this stuff?)

Me: No, that is inappropriate. Can you think of another word?

Little Joe: No.

Me: Breasts.

Little Joe: Oh.

(And he spelled it correctly on the worksheet . . .)

To read:
Talking to Your Kids About Sex: A Go Parents! Guide
How to Talk Confidently With Your Child About Sex: Parents Guide (The New Learning About Sex Series, Bk. 6)


[Cartoon credit]

The Long Haul - Part I

I promised to post on IEPs, special and gifted education, and Little Joe's ongoing saga. Because so much has happened, I'll have to do this in segments. The latest chain of events began with an elevated heart rate . . .

A couple of months ago, Little Joe's doctor noticed that his heart rate was elevated during one of his monthly appointments. The doctor noted that it had been elevated during the previous visit as well. He felt that the dexedrine Little Joe had been taking may have caused the problem--he switched Little Joe to a different stimulant medication, Concerta, and asked me to monitor it for a few days. The following weekend, Little Joe's resting heart rate was 148. This was a Sunday, so I called the on-call doc to see what I should do. She recommended that I take Little Joe to the local children's hospital. We followed up with his pediatrician the next week, and he discontinued Little Joe's stimulant meds and started him on Strattera. Strattera takes up to six weeks before the effects are noticeable. It would have been better to wait until he was out of school to make such a drastic change, but with his heart rate elevated, we couldn't wait.

As you can imagine, Little Joe's behavior worsened to the degree that the private Catholic school where he was attending asked me to place him in the public school setting where they are better equipped to handle Little Joe's special needs. I was told that he would be in a smaller group setting and receive much more individual attention. Thus began the IEP (Individualized Education Program) process all over again.

Little Joe had previously been evaluated for special services and was attending a public school on a part-time basis for occupational therapy. However, the current IEP didn't reflect all of his needs if he were to attend the public school full-time. The move began with a phone call to request an IEP meeting to include the special education program coordinator, the special ed. teacher, the occupational therapist, the school psychologist, me and my ex-husband, and the resource room teacher from the private school. At the meeting, we all discussed Little Joe and shared what we each felt his needs were. I stressed that he needs to be challenged, and that I was worried that the school might over-focus on behavior issues. I also asked for a speech evaluation. I was disappointed with the presented IEP.

While the new IEP increased the hours of services provided, these services were primarily behavior related. The occupational therapy hours decreased from 30 minutes per week minimum individual OT to "as needed" within the classroom (meaning the OT would work with the whole class on an "as needed" basis). After going through the new IEP, I expressed my concerns and a flurry of emails were exchanged with little change being made to the IEP. In the end, I signed it with "present but not in agreement" before my name. My ex-husband refused to sign it.

One reason I am pushing for a stronger IEP is so I will have a stronger document to take to another school district should I choose to move out of this district (very likely). Joe, my ex, feels the same. He doesn't live in this school district, so if Little Joe were ever to live with him again, this painful process would start from the beginning.

You see, every time one of us asked for a need to be met, we were told that it wasn't in the current (the previous) IEP, and that they were obligated only to provide services according to that IEP. For any additional services, we would have to request a re-evaluation. Little Joe wasn't due to be evaluated again until November 2008. I made the request for a re-eval, and the IEP team met (without us) to discuss whether a re-evaluation were necessary.

Meanwhile, Little Joe had other plans. Little Joe didn't want to change schools. He informed the entire IEP team that he had a plan. I enrolled Little Joe in the new school when school resumed after spring break.

Little Joe's plan is now in the implementation stage . . .

(Next segment: Little Joe's plan and more medication issues)

To read:
The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children

Asperger Syndrome

I had originally planned to write about the effect that Asperger Syndrome (Asperger's Disorder), ADHD, and other disorders can have on family life and the relationship between having a family member with one or more of these disorders and instances of domestic abuse, but after reading some comments over at Angry Professor, I decided to change directions a bit. I also invited Moof to join me in writing about AS as she has personal experiences to share. Liz at I Speak of Dreams has responded to this series on Asperger Syndrome as well.

Angry Professor writes about some frustrating encounters with a student, "Hans," who has AS. While the parent in me bristled at the original post, the educator in me could relate to this statement in the second post, Hans Revisited:

What parents need to know is that instructors at the university level are nothing like teachers in elementary and secondary school. Almost none of us have any formal teacher training. We are thrown in front of a classroom and expected to teach sometimes hundreds of kids at a time, never having learned anything about classroom management and different teaching methods. In particular, we have no training for and usually no experience at all with handling kids like Hans. And with over a hundred students, kids like Hans will be left out in the cold, no question about it. A parent myself, I can see how this would break any parent's heart.

Touché, Angry Professor.

The posts at Angry Professor really didn't bother me--we all have our frustrations, and our blogs help us work through them. However, one of the comments absolutely inflamed me:

William the Coroner said...

I'm sorry, but you might consider not sending a person like this to college at all. Nothing wrong with his intelligence, but his strengths might lie in the path of a skilled trade. Those jobs can't be outsourced, and may be a source of more concrete (pun intended) satisfaction in the long haul.

I believe that "William the Coroner" confused "Asperger Syndrome" with high functioning Autism. While Aspergers is part of the autistic spectrum, it is different from Autism. Folks with autism may be interested in a subject and remember fact upon fact regarding the subject, but it's just a bunch of facts with no true comprehension. The autistic individual does nothing constructive with these facts. A person with Aspergers will become highly interested in an area, but rather than memorize a list of facts, the Aspie understands and uses the information for other similar scenarios. For example, Little Joe is very interested in airplanes. A person with autism might collect airplanes, line them in a row, recite facts about airplanes, their design, flight schedules, etc. Little Joe, on the other hand, reads about airplanes, learns about aerodynamics, and builds paper airplanes. Little Joe will search for new paper airplane designs on the internet, then make the paper airplanes. After making the original design, he will combine the designs of different airplanes to improve their flight, thus creating his own design. But he doesn't stop with combining paper airplane designs, he also uses the origami folds he learned from another book to improve the designs. His mind works in amazing ways.

I asked Little Joe what he thought of William the Coroner's statement; here is his response:

(I also asked my daughter, Blue, but she stated simply "he's an idiot," referring, of course, to the coroner. Teenagers can be very blunt.)

Little Joe is very intelligent, but he lacks social skills. He is different in other ways as well. As you can tell from the recording, Little Joe's voice has a nasal quality to it and sounds different than the voices of other fifth graders. Like many other Aspies, he has poor coordination and meets weekly with an occupational therapist. But he wants to be a scientist; do all scientists need social skills? Some will say they do--everyone needs social skills to some degree. In fact, social skills are needed for those in skilled labor. Do coroners need social skills? After all, their patients are dead. My point is that a person's social skills shouldn't determine the educational level for his or her career choice, whether the person is an "Aspie" or not.

The Angry Professor makes a good point by stating that people with Aspergers are not best served at large universities. I would agree to an extent. I would also argue that there are many Aspies at universities who are never recognized for their disorder. People with Aspergers can learn to recognize facial expressions and the appropriate responses for social situations. Through speech therapy, they can modify their voices and learn tonal variation. It is difficult for them to do this on their own.

This is where parenting plays its vital role. It is hard, draining even, to be the parent of an Aspie. But it can be very rewarding. I'm looking forward to my son's college graduation already . . .

Read more about Little Joe and what life looks like one family (ours) affected by Asperger Syndrome here.

More AS resources:

• Moof's cross-post on Asperger Syndrome
• Asperger's from the other side (comments regarding the same blog posts at Angry Professor)
  
• WrongPlanet.net: The online resource and community for those with Asperger Syndrome, Autism, and ADHD
• A Unique Mind: Learning Style Differences in Asperger Syndrome and High Functioning Autism
• The Autism Blame Game: A parent's commentary on the Lincoln-Sudbury High School tragedy
• Why I act the way I do: living with Asperger Syndrome

Books:
Social Skills Training for Children and Adolescents with Asperger Syndrome and Social-Communications Problems
The Complete Guide to Asperger's Syndrome
Asperger's Syndrome: A Guide for Parents and Professionals

[Graphic credit]