Mutterings Of A Mindless Mommy

It has been a few days since I’ve blogged - I had a self-imposed break from the ‘net this weekend and for the most part I kept to it.  I couldn’t resist the urge to get on every now and then to check my email or certain message boards but I wasn’t on for long.  Hi, my name is Melissa and I’m a net addict.

On Saturday I watched my nephews for several hours while my sister and parents were in training to be able to provide habilitation and respite for my daughter.  We went out to breakfast, got the car washed, and then went to a BBQ sponsored by a local car club.  Yes, I am into cars.  It was nice because a few hours after we got there a gentleman with a Mercedes Benz SLR McLaren came and my nephews were in awe - although they were trying to hide it.  My oldest nephew will quickly let you know that this is a $500,000 car.  He is a car fanatic, his knowledge of cars is absolutely amazing.  At two he would sit in the back sit of his mom’s SUV saying the make and model of every car he saw.  It was nice to get some time with my nephews without my kiddos.  Now I’m not saying I don’t enjoy being around my kiddos but I enjoyed the alone time with my nephews.

Yesterday was a lounge-around day - I stayed in my PJs all day!  I love days like that.  I watched a few movies - The Last King of Scotland and Fast Food Nation.  Forrest Whitaker was fantastic as Idi Amin - The last King of Scotland was an absolutely wonderful movie!!  Fast Food Nation was good as well; albeit gross.  I read the book several years ago so I wanted to see how the movie played out.  Definitely not one you want to watch while eating dinner.

My husband is off work today and tomorrow so Ava and I got to lounge around the house this morning.  My husband took up the duties of shuttling my son to and from school as well as therapy.  Evidently Alexander did a great job at therapy trying every challenge that the therapist put before him.  He’s really starting to shine now so I’m hopeful that he will ‘graduate’ soon.  Shortly after Ava went down for a nap I received a call from the pediatrician - she wanted us to go ahead and get the blood tests done and then schedule a follow-up xray in a month.  I don’t dare wake her up early from her nap so I waited until she woke up and off we went to the lab.  She jumped the first time she was stuck and the needle missed the vein - they moved it around a few times and couldn’t get the vein so they took it out and tried in the other arm.  By then she was frantic and the two phlebotomists were talking to her trying to calm her down and I explained to him that she has autism and probably doesn’t undersand much of what they are saying (her receptive language is much more delayed than her expressive).  I was rubbing her head and whispering in her ear as they inserted the needle into her other arm and wouldn’t you know they missed the vein again!  Thankfully they moved it just a little bit and the blood started to flow.  Instantly Ava stopped crying - she saw the blood and knew that it was almost over.  I should have the results in a few days.

It’s only 6:30 pm here but we are getting ready to go to bed.  I used to be a night owl but now I’m usually asleep by 8:30pm.  *yawn*

My daughter had her two week follow-up with the pediatrician today.  The pediatrician said she was able to get the x-ray film from the Children’s Hospital and said she definitely wants to follow-up with another x-ray today.  Evidently the pneumonia was in the right lower lobe (I thought it was left) and that the x-ray showed a pleural effusion.  The doctor said it was basically a big pus-filled sac in her lung and she wanted to do a follow-up x-ray to determine the status of the effusion.  When the doctor listened to Ava’s lungs with the stethoscope she said that she heard a lot of crackling, popping, and some other noise (I forget how she described it).  Basically the crackling is directly related to pneumonia.  Two weeks ago yesterday while at the children’s hospital the doctor said she *thought* she heard some crackling and ordered the x-ray to confirm or rule out pneumonia.  Two weeks ago today the doctor said she might have heard a little bit of crackling and wanted to know if the children’s hospital said she definitely had pneumonia or just that they thought she might have it (they said she definitely has it).  Fast forward to today - the doctor said she heard crackling all over.  So based on her office visit the pneumonia has worsened. 

She should be doing much better by now but she isn’t.  Granted she hasn’t had a fever but she’s still a bit listless and has a horrific cough from the evening through to the morning.  She will have 8 - 10 coughing fits an hour - the kind of coughing fit that is scary to listen to.  She hasn’t left my bed this entire time as I’ve been concerned so neither of us are getting much sleep.  None of these signs look good to the doctor so off she sent us for another x-ray.  We probably won’t have the results today but on Monday when she gets them she will call me and decide the course of action from there.  Depending on what the film looks like she will have us get a blood test to check for  coccidioidomycosis aka Valley Fever and/or tuberculosis.  In the meantime the doctor has prescribed her Zithromax.  She said she looks stable for the weekend as her oxygen saturation was at 97% which is good; anything under 90% is considered hypoxic.

“I love being alone.”

This is what my son told me as we were walking into the house after school today.  When we get home from school we eat lunch, Ava usually naps, and Alexander goes to ‘quiet time.’  Quiet time is self-imposed, he immediately goes to his playroom after lunch to do one of many things - read, color, play with his toys, do a puzzle, etc.  If Ava doesn’t nap and wants to play with him he gets irritated.  If it is a therapy day and his quiet time is delayed by several hours he gets irritated.  Heaven help us if it is a long day and he doesn’t get any quiet time at all.  This is part of his routine that he will not change, evidently it is because he loves being alone.

When speaking to the psychiatrist about this she said it is very common among children with Asperger’s Syndrome.  For whatever reason the child just needs to get away.  After Alexander’s comment today I decided to poke around the good ole www and see what I could find on the subject; especially in light of the VA Tech shooter being described as a loner with autistic or Asperger-like tendencies (which no one professional can agree on.)

From aspergia.com:

Nevertheless, throughout history, those who were born with a strong Aspergian persona, mostly knew that something was different. The sound of the ocean would calm them down, and they needed a great deal of solitude.

One of Alexander’s CDs - Indigo Ocean Dreams - is completely ocean-themed and he absolutely loves it.  It helps calm him down when he’s made and relax him when he’s irritated.  He will also listen to it just for the sake of listening to it - it has been a tremendous help in assisting Alexander in identifying his moods and how to get back to a calm state.

Tony Attwood describes Asperger’s Syndrome on the Canadian Parents site and included this description:

The person may actively seek and enjoy solitude.

I can completely relate to my son’s desire for solitude as I am the same way.  With Ava napping and Alexander in his self-imposed quiet time I also get to benefit from some quiet time of my own.  I use this time for myself - I avoid chores, laundry, cleaning, etc during this time and instead do something I enjoy.  Sometimes I’m on my laptop, sometimes I’m reading, and other times I’m watching a movie.  I see a lot of myself in Alexander - evidently the apple doesn’t fall too far from the tree.   

I first heard the term dysgraphia a few months ago when my mother mentioned it to me.  She is a public school educator and somewhere during her day she heard about dysgraphia and immediately thought of my son.  I looked a little bit at it and thought ‘maybe, maybe-not’ and filed it away for future reference.  Every now and then it would come up and I’d read more about it and think again ‘maybe, maybe-not’.  After a report from Alexander’s teacher today I’m thinking ‘well, maybe.’  As I’ve mentioned previously he is learning above grade level in all subjects except for writing.  His 4th quarter progress report came home and in the writing section it says this “When writing, Alex usually writes with lower case letters and ends his sentences with a period.  However, the wording of his sentences often does not make sense.  Please help Alex focus on what he wants to say and then follow through with the correct sequence of words.”  Hmm…definitely food for thought.

So what, exactly, is dysgraphia?  Dysgraphia is officially a learning disability that affects a person’s writing abilities.  It can manifest in many ways including (but not limited to) trouble putting thoughts on paper, poor handwriting, and problems with spelling.  The National Center for Learning Disabilities has listed the following as warning signs for dysgraphia:

• Tight, awkward pencil grip and body position

• Illegible handwriting

• Avoiding writing or drawing tasks

• Tiring quickly while writing

• Saying words out loud while writing

• Unfinished or omitted words in sentences

• Difficulty organizing thoughts on paper

• Difficulty with syntax structure and grammar

• Large gap between written ideas and understanding demonstrated through speech.

So you can see while I am still only in the ‘maybe’ stage - its hard to measure some of these concepts in a kindergartener.  However as his writing is progressing we are seeing some of these issues manifest.  The ones that pertain to Alexander are pencil grip/posture, avoiding writing/drawing tasks, tiring quickly while writing, saying words out loud while writing, unfinished or omitted words in sentences, and large gap between written ideas and understanding demonstrated through speech.  So right now its hard to determine what would be considered age-appropriate and what would be considered a deficiency.

From the research I’ve done on dysgraphia it looks like an occupational therapist is a good place to start with regards to diagnosing and treating dysgraphia.  I have put a call in to Alexander’s OT to see if she has any experience with it - I figure we’re already seeing her we might as well get her take on the matter if she has knowledge on the subject.  Evidently there are several tests that can aid a professional in determining whether a child has dysgraphia including the Slingerland Screening Tests for Identifying Children with Specific Language Disability and the Test of Early Written Language .

So how does dysgraphia relate to Asperger’s Syndrome?  Dysgraphia is one of the conditions that is seen at an increased rate among children with Asperger’s Syndrome.  Basically its a not-so-uncommon comorbidity.  Is it a comorbidity for Alexander?  Time will only tell.

Yesterday I mentioned to Alexander’s play therapist that the psychiatrist has diagnosed Alexander with Asperger’s Syndrome contrary to the psychologist’s findings.  The first thing the therapist said was “I agree.”  She is a licensed clinical social worker so unable to make a diagnosis but she works with many HFA (high-functioning autism) and AS (Asperger’s Syndrome) kiddos so is familiar with how they present, clinically.  She said she was surprised that the psychologist said that it was just anxiety and feels that the psychiatrist’s diagnosis is correct.  I told her that the psychiatrist looked at all of Alexander’s quirks and that it ended up being like “a neat little package called Asperger’s Syndrome.” 

In reading over the past week I have learned how Alexander has many classic AS traits that aren’t addressed in the DSM-IV.  In the OASIS Guide To Asperger’s Syndrome they have a section called Suggested Solutions for Common AS-Related School Problems and some little things stood out.  One section discussed the child having difficulty maintaining a comfortable posture at his desk and different ways to address it.  During my son’s occupational therapy evaluation it was determined that he has problems with postural praxis as well as low muscle tone in his upper body leading to problems with fidgeting to get comfortable while sitting at a desk.  This isn’t a part of the DSM-IV criteria for Asperger’s Syndrome but evidently it is something common among many children with Asperger’s Syndrome.

Other issues that aren’t classified as diagnostic criteria but when looked at as part of a whole child view could be part of Asperger’s Syndrome are handwriting issues including dysgraphia.  At 5 it is hard to determine whether or not Alexander has dysgraphia but he certainly has some of the symptoms - as he gets older and his ability to write his thoughts improves we’ll know better whether dysgraphia is an issue.  At school he is learning above grade level in all academic categories except for handwriting - he is considered ‘at grade level’ for handwriting but we have been told we really need to work on his fine motor skills and his writing techniques. 

Sensory processing disorder is common for all children on the spectrum, not just those with autism.  My son is no exception in this case.  Many times children with AS present with sensory defensiveness - they are over-sensitive to certain types of sensory input including sound, touch, taste, smell, and sight.  My son is sensitive to all but smell.  The bright sunlight hurts his eyes; he is not a touch-feely kid and will wipe off kisses or other light touches as he can feel the sensation of the touch linger; he has a very sensitive sense of taste and thus has problems with food; he does not like loud sounds - especially sudden loud sounds.  It is not unusual for a sudden loud sound to make him mad - where it scares my daughter it just makes my son mad. 

Another part of Alexander that helps create the neat little package is his coordination/motor-planning issues; sometimes called dyspraxia or developmental coordination disorder.  During Alexander’s occupational therapy evaluation the therapist noticed motor-planning issues on his part and is working on them with him through therapy.  He has speech articulation issues that will probably be addressed through the school district next year - this could be problems with his oral motor-planning - getting his mouth to form the correct shape to make the proper sounds. 

I could go on and on about Alexander’s quirks that fit into the profile of a child with Asperger’s Syndrome but I won’t.  I’m definitely not focusing on the negative - these little things make Alexander who he is - my son, my oldest, and my sunshine.  I just thought that the neat little package comment really summed it up - all of these varying issues come together to form one neat little package and that package is called Asperger’s Syndrome.

The CDC and the Interdisciplinary Council on Developmental and Learning Disorders has released new guidelines for identifying children at risk for Autism Spectrum Disorders and other developmental delays.  From the press release dated today, 4/23/07:

Leading experts on child development today presented a new framework for identifying children at risk of Autism Spectrum Disorders (ASD) and other developmental challenges, saying that current guidelines fail to identify many children who need and would benefit from early intervention.

The framework is contained in a report by a special working group formed by the Centers for Disease Control (CDC) and the Interdisciplinary Council on Developmental Learning Disorders (ICDL), co-chaired by Dr. José Cordero, former Director of the CDC’s National Center on Birth Defects and Developmental Disabilities and currently Dean of the School of Public Health of the University of Puerto Rico, and Dr. Stanley Greenspan, chair of the ICDL.

We believe this framework improves our ability to identify infants, young children, and families at risk and to organize truly comprehensive, developmentally-based intervention efforts.
The framework presents newly formulated indicators to identify at-risk children in the first and second years of life, components for a comprehensive evaluation of infants and children determined to be at risk, and essential elements of a successful early intervention program for ASD and other developmental disorders.

The authors say the new rubric casts a wider net than current common practice in an effort to identify all children at risk of developmental disabilities.

“Children identified with developmental or behavioral disabilities earlier have a better chance of reaching their full potential,” said Dr. Cordero. “We believe this framework improves our ability to identify infants, young children, and families at risk and to organize truly comprehensive, developmentally-based intervention efforts.”

The CDC-ICDL framework is based on current understanding of healthy developmental patterns and is designed to detect all possible deviations from those patterns. It uses risk indicators designed to detect a lack of mastery of age-expected emotional, social, and cognitive milestones during a child’s first 2 years of life.

The entire press release can be viewed here: New Guidelines Promise Earlier Identification of Autism - CDC/ICDL Working Group Releases New Report during Autism Awareness Month and the report can be viewed on the ICDL website: CDC/ICDL Collaboration Report On A Framework for Early Identification and Preventive Intervention of Emotional and Developmental Challenges

Asperger’s Syndrome expert Tony Attwood spoke with Richard Fidler on his ABC Sydney (Australia) radio show. A brief summary of the show is in text the rest you will need to listen to the audio files by clicking on the link under Attwood’s photograph. This is just a quick update as today is one of our therapy days so I’m heading out the door soon and don’t have time to summarize the audio file. It was very enlightening, especially to me as a mother of a child recently diagnosed with Asperger’s Syndrome. If you have a spare 45 minutes or so I highly recommend listening to the audio piece.

In honor of National Autism Awareness Month there are two shows airing tomorrow, April 22.  The first I have discussed:  Nick News with Linda Ellerbee will be focusing on the topic Private Worlds: Kids and Autism. The show will air on 4/22 at 8:30pm ET/PT on Nickelodeon; check your local listings for the broadcast station number.

Another show that will be on tomorrow is called After Thomas. After Thomas is based on the true story of the Gardner family who live in Scotland. The movie focuses on their son Dale’s (Kyle in the movie) bond with the family dog Henry (Thomas in the movie) and the trials and tribulations they face in an era where there wasn’t as much known about autism as their is now. Dale is now a 18 year old who has made tremendous growth when compared to the child depicted in the movie.   This will air on BBC America at 8pm ET/PT.

I have my DVR set to record both shows and will give a follow-up review of them early in the week.

My emails are abuzz these past 24 hours with information linking the Virginia Tech Shooter Cho Seung-Hui with autism.  CNN.com had a report up for about an hour yesterday containing this information but for an unknown reason pulled the story.  Stories on the Washington Post website state that his family members thought he might be autistic as a youngster.  There is still no definitive answer as to whether or not he was actually diagnosed with autism or if it was just suspected.

AutismLink has published a press release addressing their concerns.  “While the entire autism community in Pittsburgh and across the nation are devastated by the recent events at Virginia Tech, we would like to caution the public not to stigmatize children or individuals with autism.”  The entire press release can be viewed here: AutismLink Reacts to Diagnosis of Autism in Virginia Tech Shooter

There is a blog entry on the Washinton Post site that has a really disturbing comment from a reader. Here is the comment in its entirety:

Sound the alarms, there are many autistic children in public schools today. What is this world coming too allowing children with autism into the public school system? Are you kidding me? This anonymous poster sounds rather ignorant. Yes some autistic children have violent outbursts but so do non-autistic children. Should we just institutionalize our children to protect everyone from them? No. These children deserve an education just like neurotypical children do. I usually am not at a loss for words but with this comment I’m pretty close to speechless. Shocked and saddened all in one.

My son had a follow-up appointment with his psychiatrist today and I brought up my concerns about his social issues, anxiety, regimental to routines, obsessions with numbers specifically miles and minutes, etc.  We first saw the psychiatrist almost two years ago when we were concerned that Alexander may have ADHD.  We have since seen her on a regular basis and started medicine to help control the ADHD symptoms in October.  She knows Alexander’s history and knows the family.  She is also the parent of a child with Asperger’s Syndrome.  She said that Alexander does have Asperger’s Syndrome and suggested Tony Attwood’s new book The Complete Guide to Asperger’s Syndrome and said that in addition to the play therapy we really need to get him into a social skills group as soon as possible.

So I’m left wondering, is it just anxiety or is it truly Asperger’s Syndrome.  The psychiatrist seemed to look at the big picture - not just the DSM-IV criteria.  The psychologist adminstered a battery of standardized tests and my son showed deficits in social development and also scored in the very likely range on an Asperger diagnostic scale.  While the psychologist agreed that Alexander met the DSM-IV criteria for Asperger’s Syndrome she felt that anxiety was a more accurate diagnosis.  The psychiatrist feels that the anxiety, the sensory issues, the feeding issues, the motor planning issues, etc are all part of a bigger picture and when looking at those as well as the DSM-IV you get a clear picture of what is going on.

While I was relieved to hear the anxiety diagnosis it just didn’t feel complete.  I wasn’t ready to hear that my oldest child was also on the autism spectrum so I welcomed the anxiety diagnosis.  In the few weeks it’s been since then it just hasn’t felt right.  He definitely has anxiety but it just doesn’t seem to answer for all of his quirks.  My husband and my mom both readily accepted the psychiatrist’s assessment of the situation as that is what they’ve suspected all along.  My mom is a public school teacher and has a student with Asperger’s Syndrome so is somewhat familiar with it.  My husband is just my husband - no experience with it but he said it made sense. 

So right now I have conflicting diagnoses but if I go with my momma’s instinct I think the psychiatrist has a more accurate assessment of the situation.  She has not only known him longer but has parental experience in addition to clinical experience plus she looks at the whole child vs. just the criteria set forth in the DSM-IV.