Tag Archives: Therapy & Medication

The Reason

Now we get to the heart of the matter – the reason the Knowledge for People team came to Nepal. We have taken some time to get over our jetlag, do some sightseeing, and acclimate a little. Now it’s time to work. And I have come to realize that, apart from raising my children, it is the most fulfilling work of my life.

AutismCare Nepal is a small, new, parent-founded center in Kathmandu. It is also entirely parent-funded. Most of the parents had to go to Delhi, India, to receive a diagnosis for their children and therapy/treatment suggestions. Imagine having to go to a different country for a diagnosis. They had absolutely no resources for autism families in Nepal. AutismCare Nepal is the first step to rectifying that.

Zahida, Tanya, Ann-Marie, Nikki, Dori

And that sort of makes the Knowledge for People team the second step. Our team is comprised of Nikki (the director), Dori (speech therapist), Ann-Marie (ABA teacher), Zahida (behaviorist), Blaine (photo/videographer), and me (parent representative). We have prepared presentations on general autism information, parenting experience, ABA therapy, PECS, social stories, and sensory integration therapy. Our idea was to have two days at the beginning of the week to give the presentations, as a way to introduce the background knowledge about the therapies and strategies. Then we would spend the rest of the week working directly with the children (twelve of them, we were told) and their parents on an individual basis. Upon our arrival, we discover that things have been rearranged. The presentations are now scheduled for the end of the week, and individual sessions will be done first. Not only that, but due to a news article about our arrival that had been published the week prior, the number of children jumped from twelve to thirty. We never thought there would be so many. But then again, this is autism. The rapid increase in Kathmandu mirrors the increase in developed countries. I immediately saw the parallel.

So, we figured out a way to fit in 28 individual sessions with the families. We wish we could work with them all individually, but this was the best we could do. The two families we couldn’t fit in (and there were even more as the week went on!) agreed to attend the presentations at the end of the week and ask questions about their individual needs then. We set up stations in different rooms of the center, which is a two-story house that the parents rent (in addition to their regular living expenses). One room is for PECS and social story instruction, another room is for ABA/DIR Floortime instruction, and the third is for sensory integration. The parents and children rotate through each of the rooms, spending close to an hour in each one. Some of them have walked a great distance to be here. Some of them have taken various buses for over an hour. Some speak a little English, some none at all. By the time all of those scheduled for that day have gone through all of the rooms, the poor kids are past their limits. It is exhausting for everyone.  As an introvert, it is difficult for me to give a condensed version of my half-hour-long sensory integration presentation to each new parent. I have to do this otherwise they will not understand the reasoning for the sensory therapy techniques that Zahida (who is studying to be an OT) and I are suggesting for their children. I have to describe, among many other things, the vestibular and proprioceptive senses 28 separate times (29 if you count the presentation at the end of the week). I wish we could have done the presentations at the beginning of the week, so that everyone would have this information prior to the individual sessions, but I have to be flexible and focus on doing it differently than I expected. And here I see another parallel – learning to be flexible when plans change is something that my own son struggles with on a regular basis. Now I have some idea of just how exhausting it is for him.

Aside from adjusting to the change in plans and the increase in children, overall our individual sessions go very well. The children range in age from three to eleven, at different areas of the spectrum. Several of them are nonverbal, and some have limited verbal ability. Some are fearful, some are not. Some are quiet and complacent, others are loud and aggressive. Some throw sensory seeds all over the room, a few lie down and nap. Some put everything in their mouths, some categorize and line things up. But all of them, well, they are simply beautiful. I see so much of my son in many of them that it throws me back to the early days of his autism diagnosis, when we didn’t have the internet for information and support, and all the books I could find were archaic or otherwise not helpful. This is where those parents are. And they are wonderful – so dedicated to their children and eager to learn. My experience of having my son’s diagnosis twelve years ago helps me to have some idea of what they’re going through now. I look into these parents’ tired but yearning eyes and want to throw my arms around them.

And of course they have questions. Tons of questions. Questions about spitting, toilet training, masturbation, safety, eye contact, head-banging, you name it. They are sponges, for lack of a better metaphor, absorbing every suggestion, every piece of information I can give. But no one has all the answers, especially not me. And near the end of one of my individual sessions, when a five-year-old girl begins having a seizure, I freeze. Her mother is sitting cross-legged on the floor with her daughter lying in her lap. She does not speak English and the translator was needed elsewhere, so I have no way to communicate. But the mother, of course, knows what to do. She calmly holds her daughter as she seizes; I watch her little body twitch violently, and she moans with each spasm. I wonder if she is in pain, or afraid, but maybe her sounds are involuntary. I don’t know. I feel useless. I have no experience with seizures, and this one seems to be lasting a minute, but feels longer. Trying not to panic, I ask if she needs anything. The mother glances at me. I know she does not understand my words, but I think she senses the concern in my voice, and there is some sort of appreciation in her eyes.  Then she turns her attention back to her daughter, who soon stops convulsing. A moment later, the mother picks up her things and, with her daughter in her arms, says Namaste and leaves.

I take a break. I blot my face, drink some water, and go in the next room to observe the end of a PECS session. I know if I go somewhere alone, my emotions will overcome me, and now is not a good time for that. It is mentally and emotionally taxing, this work we are doing, but as I mentioned above, it is the most fulfilling of my life. I know that my suggestions cannot help everyone, like the parents whose children have seizures, but I also know that my presence here is making a difference. They know that people out there care. That we would come from half way across the world to try to help, to tell them they are not alone. Yes, that is the reason.

For photos of us “in action” working with the kids and parents, click here.

To Med or Not to Med

The term “self-medicate” has a negative connotation.  It makes me think of alcoholics or drug addicts, both prescription and illegal. Yet, taken literally, the two words simply mean to administer medicine to oneself. Or to want to.

Nigel and I saw his doctor – his psychiatrist – today. He goes in every couple of months for his “med-management” appointment. He doesn’t like these appointments because he doesn’t like answering questions about himself (really, he only likes answering questions about Indiana Jones, or Lego, or the JFK assassination, or either of the World Wars). And even though I prepared him ahead of time, reminding him that the doctor is required to ask these questions and that he could write the answers down if he didn’t want to say them (“Why would I want to write anything, which would cause pain to my hand?!!”), he still got impatient with the questions and often sneered his answers. Or instead of actual answers, he would sneer – in reply to “How would you rate your mood today?” – “Same as it was last time!!

This level of verbal hostility probably encouraged the doctor to nod in agreement when I indicated to her Nigel’s desire for some medication that would help him to not blow up at certain peers of his who think that it’s fun to antagonize him. He wants something to control his tendency to respond in anger because he wants to go back to being mainstreamed. And he knows that that is his most difficult hurdle. Not because anyone told him, but because he actually has the self-awareness to see it. Yet, he does not have the ability to control his reactions to people when they upset him. So, he wants medication. He knows that medication helped him to stop habitually pulling out his hair and eating it, so he figures that medication can help with his behavioral issues. He wants to self-medicate.

And I had done my research and knew what the doctor would suggest: antipsychotics. There’s another negative connotation. Is that really what he needs? Are the occasional times that he blows up worth putting him on a daily medication with significant side effects? I asked him, there in the doctor’s office, gently, “I know that some of the kids bothered you every day, but did you respond with anger every day?”

“Yes. Every day.”

I took a deep breath and tried to let what he’d said sink in. It was too difficult to imagine, again, what he went through at school, day after day, and to think that in spite of that, he still wants to go back. He wants to be like everybody else.  It means that much to him. But I still wasn’t ready to say yes to antipsychotics. So I suggested that he try behavioral therapy to learn different responses when his peers anger him.

“I don’t want to see more psychiatrists,” he said, right there in the doctor’s office. “They’ll do the same kind of treatment!”

His psychiatrist smirked as she wrote that down. I asked, “What kind of treatment are you expecting from the psychiatrists?”

“Asking me questions!” And, of course, the psychiatrist politely laughed.

But the issue was still hanging over my head. He wants to change his behavior but he can’t handle therapy sessions. So, the doctor went and got several pages’ worth of printed material for me on the two medications she suggested as possibilities (Risperdal and Abilify). She gave me her cell number if I wanted to discuss anything with her. And I left feeling just as unsure and melancholic as when I’d arrived.

Right now Nigel is sitting on the couch in the living room, watching The Never-Ending Story III, which he was excited to rent tonight. Most of the time, I hear the faint sounds of the TV, which he keeps at a low volume, but once in a while he makes stim-type sounds or repeats one of the lines of the movie. He is happy; he is doing his thing. And he is not on antipsychotics. I wish it could always be that way.

Yearbooks As Art Therapy

Those of us who have ever had some type of counseling or psychotherapy know how beneficial it is to be able to talk with a professional about what’s going on in our lives and how we’re handling it (or not). Therapy is also helpful for discussing past events, especially traumatic ones, how they affected us, and how we can work through them. But what if talking is difficult for you? Or impossible? What if you don’t process events and emotions verbally? ASD people encounter just as much, if not more, stress and difficulty while trying to function in an NT world, and many of them have past issues they need to work through as well.

Enter art therapy for autism. When thoughts and feelings cannot be discussed verbally, art therapy works wonders. It helps to stimulate imagination, regulate sensory issues, encourage hand-eye coordination, and express emotions (including stress). Other long-term benefits include developmental growth, recreation, and self-expression. But there can even be profound benefits from just a single session of art therapy. I witnessed this last night with my autistic son.

Ten months ago, I removed Nigel from the middle school where he had been mainstreamed. He had endured daily bullying, both physical and verbal (and, of course, emotional). This put him in a constant state of anxiety and agitation, making him unable to focus and learn, unable even to function. Soon after removing him from that environment, he became much calmer and was able to focus while being homeschooled. On a weekly basis, even though months have gone by since he attended that school, he mentions how much bullying angers him or mentions something in general about bullies. I’ve always assured him that he wouldn’t have to deal with that anymore. But what I didn’t realize was that Nigel had not yet worked through the trauma of his ordeal. He couldn’t really talk about it, other than his occasional comments, and that wasn’t enough. The memories were still painful for him.

Then last night Nigel brought out his yearbook. He showed my boyfriend a picture of a girl he liked, and my boyfriend joked about how he used to draw moustaches on yearbook photos. Nigel laughed and went back to his room. He came out an hour or so later with a Calvin and Hobbes book and showed us a series of cartoons about Calvin’s bully, Moe. In one cartoon, Calvin mimics an ape as he quietly walks behind Moe. Moe and CalvinNigel couldn’t stop laughing at the cartoon. He went back to his room and came out a few minutes later with his yearbook, showing us how he had used a ballpoint pen to make the face of his worst bully into an ape face. He laughed some more and went back to his room, where he proceeded to laugh non-stop for over an hour. Finally, his laughter subsided, and I went to him to suggest that he get some sleep. He proudly showed me his yearbook. Each page of every grade level had several ape faces drawn over the bullies, both boys and girls, who had tormented him. I fought back tears and didn’t want to count how many faces he had drawn on; there were many. I couldn’t bear to think of how horrible it really had been for my son, day after day. I’ve always known that the decision to homeschool him was the right one, but now I had validation. And it sickened and angered me.

But Nigel had found a way to work through his anger. He devised his own art therapy. He scribbled out his anger while eliminating the bullies’ facial features, and then he laughed while adding humiliating details like hairy necks and stupid grins. And he felt better. As I said good night to him, he told me, “Now I can sleep without thinking about the bullies.”

I’ll try to do the same.

The Schedule

As those who teach or live with autistic individuals know, schedules are a necessary tool, not only for teaching, but for just getting through the day. For Nigel, his schedule is a lifeline, a beacon to show him the way. It has always been so. When so much about dealing with people is unpredictable, it comforts him to know what he’s supposed to be doing when (of course, this does not usually apply at bedtime).

I found this description of schedules for autistic students at Specialed.us:

Definition: A daily visual schedule is a critical component in a structured environment. A visual schedule will tell the student with autism what activities will occur and in what sequence.

  • Visual schedules are important for children with autism because they:
    • Help address the child’s difficulty with sequential memory and organization of time.
    • Assist children with language comprehension problems to understand what is expected of them (5).
    • Lessen the anxiety level of children with autism, and thus reduce the possible occurrence of challenging behaviors, by providing the structure for the student to organize and predict daily and weekly events.
    • Assist the student in transitioning independently between activities and environments by telling them where they are to go next.
    • Can increase a student’s motivation to complete less desired activities by strategically alternating more preferred with less-preferred activities on the student’s individual visual schedule.

      Example: By placing a “computer” time after “math”, the student may be more motivated to complete math knowing that “computer” time will be next.

    • For the student with autism, the consistent use of a visual schedule is an extremely important skill. It has the potential to increase independent functioning throughout his life – at school, home and community.

Without a doubt, schedules are highly effective tools. But Nigel’s schedules over the years have been much more than that. They have been a type of therapy. And I’m sure they will continue to function as such perhaps for all his life.

Yesterday I wrote about the type of homeschooling program I’m doing with Nigel and how I designed it. Here is his weekly schedule:

homeschool scheduleTime: What we are doing Monday through Thursday
8:00 alarm rings
8:10 out of bed, go to the bathroom, wash face
8:15 eat breakfast, rinse bowl
8:20 brush teeth
8:23 get dressed
8:30 start homeschool: Math: 1 pg of If Mathematics, 1 pg of Core Skills Math
9:00 Writing/Language Arts: 1 pg Quick Practice Writing Skills; Essay Writing, either 1 section with Mom or 1 pg by self
9:30 Science: go online to study topics from Grade Level Standards; take 5 footnotes from websites
10:10 snack & 10-min. break
10:20 Social Science: read books from library or go to websites to study topics from Grade Level Standards; take 5 footnotes from each source
11:00 Physical Education or Library Time
Mon: bike ride on Greenway
Tues: 15 min. yoga/15 min. push-ups & weights
Wed: walk to Phoenix library or drive to TMS library
check out 3 items: 1 social science book, 1 educational DVD, 1 book of choice
Thurs: 15 min. yoga/15 min. push-ups & weights
11:30T/Th Elective for the week (see elective list)
12:00 prepare & eat lunch
12:30 check responsibility chart & do chores for that day: when chores complete, you have free time
Ohomeschool schedulen Fridays I go into the office for a few hours, so that day has a different schedule. Nigel gets up at the same time and then takes one of the aforementioned educational videos, watches it, takes 5 “footnotes,” as he likes to call them, and then types a summary on his computer to show me when I get home. I am fortunate that he has reached a point where he will be okay for a few hours alone at home, following his schedule. Maybe it’s a lifeline for me too.

Brain Wave Therapy

Brain wave therapy is truly amazing. It can heal illness, stop problem behavior, increase productivity and creativity, induce sleep, optimize learning and memory, aid in relaxation and stress release, and creates a meditative environment. Kelly Howell at Brainsync.com, a leader in brain wave technology, offers this description of brain wave therapy:

First discovered by biophysicist Gerald Oster at Mount Sinai Hospital in New York City, brain wave audio technology sends pure, precisely tuned sound waves of different frequencies to your brain via stereo headphones. In his EEG research, Oster discovered that when different vibrations, or sound frequencies, are delivered to the brain separately through each ear (as with stereo headphones), the two hemispheres of the brain function together to “hear” not the external sound signals, but a third phantom signal. This signal is called a binaural beat, and it pulses at the exact mathematical difference between the two actual tones.

With Brain Sync programs, the binaural beat is then embedded in soothing music, helping the listener to easily attain the alternate brain wave pattern. The result is 30 or 60 minutes of peaceful meditation while your body and mind benefit from the healing frequencies.

I love Brain Sync’s programs, particularly Positive Thinking, Create Success, Deep Meditation, Deep Insight, Brain Massage, Ecstasy, Relieve Jet Lag, and Awakening Kundalini. I recently gave Mind Body Healing to my father, who is undergoing chemotherapy for colon cancer. Last year, a friend of mine who worked nights benefitted from Healing Sleep. The programs are highly effective.

And so I am wanting to have Nigel try brain wave therapy. Regarding using brain wave therapy with children, Brain Sync maintains “Brain wave centered programs are intended for adults only and are strongly not recommended for babies or children under the age of 15, as their brains are still developing.  If brainwave therapy is used for a child, it should be under the care, advisement and supervision of a healthcare professional.”

With that in mind, I decided to do some online research in the area of brain wave therapy, also called neurofeedback, and autism treatment, and found some positive articles. Bio-and neurofeedback programs involve equipment that monitors and measures the brain’s electrical activity instead of using the audio recordings of binaural beats embedded in music (like Brain Sync’s programs), but the goal is the same: to retrain, strengthen, and calm the brain through brain wave patterns.

Here is what I found at Autism-home.com about using neurofeedback to treat autism:

A consultant to EEG Spectrum International, Inc., which developed the software and hardware interfaces for Neurotherapy and developed training courses for appropriate clinicians, Dr. Jarusiewicz also runs a non-profit organization, Atlantic Research Institute, Inc. A.R.I. develops and manages research projects using Neurotherapy, particularly in the area of autism, learning disabilities, disordered brain issues as well as addiction. Her study on the use of Neurotherapy has been published by the peer-reviewed journal, Journal of Neurotherapy, Volume 6(4), 2002. The results were impressive. She showed with statistical significance a change (lessening) of autism behaviors by 26% in an average of 36 sessions over 4.5 months. This was compared with a control group that used conventional methods of changing behaviors that achieved 3% change. All major issues improved for all children trained: speech, schoolwork, tantrums, socialization, anxiety and depression.
Dr. Betty is now working on a pilot project to enable parents of autistic children to conduct neurofeedback from home, with the help of a licensed clinician. She is also conducting a clinical trial for FDA approval for use of neurofeedback specifically for use in the autistic spectrum, which is in the planning and development stages.

This particular article was written in reference to an 8-year-old boy, so it sounds like age was not a factor for them. I have decided to have Nigel start with a Brain Sync program soon, and I will certainly post his progress here as we go. I’m optimistic!
 

Medication

I struggled with this one for a while, not just for Nigel but also for myself.

In late 1997, after crying one afternoon because I could not stop rearranging the chairs around the kitchen table, I realized that the anxiety wasn’t going away on its own. I had several other symptoms as well: peeling skin off the bottoms of my feet until they bled, systematically pulling out my hair, and chronic insomnia. I finally went to a doctor and was diagnosed with obsessive-compulsive disorder. The ‘when it rains it pours’ adage is unmercifully true: my diagnosis came one month before Nigel’s autism diagnosis and my husband’s announcement that he wanted to be separated.

For six months prior to obtaining medication for myself, I had struggled with believing that it was necessary, that it wasn’t a sign of weakness. The doctor had to remind me that if something was wrong with any other part of my body, I wouldn’t hesitate to obtain the medication I needed. If I had a heart disease, I might need antiplatelet drugs. If I were diabetic, I would need insulin. I agreed to a low dosage of Zoloft, and I experienced relief from my symptoms within days of taking it. I took it for a year and a half.

Within the past year, I had noticed that Nigel exhibited signs of anxiety, possibly OCD. He pulled out his hair so much he would create bald spots. He would rub his lips so hard that  he had rough, bleeding patches around his mouth. He had chronic insomnia. I had thought that his anxiety was environmental, due to the constant stress of the middle school. When I pulled him out of the school, his lips/mouth area improved, but he still had insomnia. And the worst thing was that not only was he still pulling out his hair, he had started eating it. I knew then that, even though he was only thirteen, he needed medication. Also, I have read that autistic teens are highly susceptible to depression, and with that running in our family as well, I figured getting him on Zoloft now might cut the depression off at the pass. There are some in my family who think I jumped the proverbial gun, that he’s too young to be on medication, that I should wait and see. But pulling out your hair and eyelashes and eating them indicates a definite need for medication, and I do not regret my decision.

I am happy to report that Nigel is sleeping much better now and has a full head of hair. Life goes on. And I am far too busy to be rearranging the chairs around the kitchen table, thank God.

Autism Acronyms

Life with autism is full of acronyms. From the first IFSP (Individualized Family Service Plan) meeting and the use of PECS (Picture Exchange Communication System) to the last IEP (Individual Education Plan), we SPED (Special Education) parents are bombarded with a list of acronyms to learn and use. It seems like such an odd element of an already challenging existence.

I remember being at Nigel’s first IFSP meeting, when he was three. I felt overwhelmed and underinformed. Back in 1997, autism was not the buzzword it is now. Most parents of now-teens experienced untold frustration trying to research autism information, therapy, symptoms, etc. when their children were first diagnosed. The internet was not the resource it is today, and all the books I could find on autism were archaic, bleak, and (I felt at the time) of no help to me. My local Barnes & Noble had two books on autism: Let Me Hear Your Voice, by Catherine Maurice, and The Siege, by Clara Claiborne Clark. I flipped through both of them there in the store, got a lump in my throat, felt the desire to slip into denial (the ‘how could he be autistic? he smiles and lets me hug him!’ self-talk), and left. I did wind up reading those books at a later date, and I came to consider them an invaluable source of encouragement. Back then I wasn’t ready.

I went to that first meeting blind. The therapists started talking about PECS, SI (Sensory Integration), and OT (Occupational Therapy) and I was completely lost. It wasn’t until months later that I learned that the intensive program that Nigel was enrolled in was actually ABA (Applied Behavior Analysis) -based. I learned about various other therapies, including AIT (Auditory Integration Training), FC (Facilitated Communication), and later, the GF/CF (gluten-free/casein-free) diet. When I had internet service I looked up the DAN (Defeat Autism Now) program and joined ASA (Autism Society of America) and read about the federal Individuals with Disabilities Education Act (IDEA). I needed a glossary to keep them all straight.

Now when I go to my local Barnes & Noble, there is an entire section devoted to autism-related topics, not just two books mixed in the Special Needs shelf (yes, there was only a single shelf for all books on special needs children). And now on their website, under the category of Autism and Asperger’s Syndrome, there are 26 subtopics listed and 462 individual books available having to do with autism. That is amazing to me, and wonderful. And many of them have glossaries defining all the autism acronyms I’ve come to know and love.