Mutterings Of A Mindless Mommy

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.

As someone relatively new to the world of autism I have read up on the biomedical treatments.  Only after reading about them did I find the counter points to biomedical treatment.  It is really a contradictory world with many strong emotions on both sides of the coin.  After reading everything that was thrown at me I made the choice to not do any invasive biomedical treatments with my daughter.  Thankfully she has responded so very well to therapy that I am not second-guessing my decision to not ‘detoxify’.  What exactly is detoxifying?  Basically it is chelation.  Dictionary.com defines chelation as:

Medicine/Medical.

There are other biomedical treatments but for the purpose of this blog post I am going to focus on chelation.  There is a local naturopathic college that is running a chelation study for children who have been diagnosed with autism.  I contacted the school to get more information and found out that they use IV chelation.  That pretty much sealed the deal for me - I didn’t want something as invasive as an IV.  So why are people using the word detoxify instead of chelation?  Dr. Kenneth Bock was on the CBS Morning Show yesterday discussing his new book Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders and he used the term detoxify instead of chelation.  In my opinion this is happening because detoxify is a much more positive word.  Many people don’t immediately know what chelation is and when they read up on it they might read about the controvery surrounding it (including an autistic child’s death).  I am a member of several internet support groups for autism and a few of them are very heavily into the biomedical route. I read and learn but am still not convinced.

I probed a little more around the ‘net and found this counter argument to the CBS piece: CBS Softballs Doctor Promoting Dangerous Therapy for Autism.

Just some food for thought. I will never say someone is wrong for choosing a biomedical route in an attempt to cure their child of autism but I’m not sure I’ll ever understand it. The science behind it just doesn’t make sense.

Yesterday was a very busy day in the mindless mommy household.  Not only did the kids have school but Ava was meeting with her new occupational therapist (the one contracted through the state) and Alexander was scheduled to meet with his play therapist.  I’m going to start with the play therapist appointment; it went well.  The whole family met with her and she is really a very kind soul and it felt like she was genuinely interested in the problems Alexander is dealing with.  He was having one of his better days, he even had a twinkle in his eyes.  Everytime the therapist looked at Alexander he’d duck inside a little play tent she had in her office.  However he was able to answer some basic questions without shutting down.  We all talked for a solid hour before dismissing for the day.  The next two appointments will just be Alexander with Miss Natasha and then after that the entire family will reconvene for a session.  She’s going to start with helping Alexander get the words he needs to describe his feelings and then from there work with us on little ways to disrupt his routine, in a non hostile fashion, to help him break out of his strict structure.  We discussed a social skills group but near the end of our session she doesn’t think he’s ready for one yet since most of his pretend play is still so directed.  I had mentioned that often-times I pretend ‘wrong’, for lack of a better word.  He has a script in his head and if I don’t pretend the way he has it scripted out he’ll correct me.  She said he needs to be able to roll with the punches and accept something out of his script readily before he’ll be ready for a social skills group.  I hadn’t realized that it was such a problem but I’m glad we’re getting it addressed.

Alexander has a weird way of expressing himself at times and the counselor said she couldn’t definitely see why we were thinking Asperger Syndrome.  On Monday as we were heading to his occupational therapist he said “my nerves are chasing the car.”  I asked him if they were going to catch the car and he said no so I suggested he tell his nerves to go home and his response was “my nerves want to come in and watch me during therapy.”  That is just an interesting way for a 5 year-old to express his anxious feelings.   We are hoping that he is receptive to the play therapy and is able to grow from it.  If the only thing we achieve from it is that he isn’t as awkward socially then I will feel like it is a success.

In Ava news she met her new occupational therapist, Miss Nancy.  In typical Ava fashion she took right to her.  Ava will go off with anyone without a second thought.  It is really kind of scary to me - she has no stranger anxiety.  She participated fully in her 50 minute session and the therapist was impressed with her skills.  My guess is when this six months of OT is over she’ll graduate from occupational therapy.  That will be a total of nearly 10 months; I just hope they can resolve the sensory issues not just the motor and praxis issues.

Ava woke up with a small cough yesterday morning.  It was a weird one but I didn’t think much of it, it has been quite windy here and the wind has kicked up a lot of dust and pollen.  As the day progressed her cough got worse and at play therapy the therapist suggested it may be croup.  Ah hah!  That’s what it reminded me of, a croupy cough.  On the way home from play therapy we stopped off at the pediatric urgent care (our doctor’s office couldn’t get us in as it was 30 minutes before close); thankfully there was zero wait so we were able to get in and out with relative quickness.  It is, indeed, croup.  She was given a single dose of a long-acting steroid and we were sent on our way.  I’m glad we went when we did because as the night went on the fever snuck up on us and the cough continued to get more frequent.  Thankfully it sounded better but had we not received the steroid we most definitely would have been out in the middle of the night having her looked at.

The downside to the steroid is that it makes her just mean.  About 45 minutes after she went to sleep she woke up and was just crying and making weird sounds.  She was looking off at the corner in my room and was non-responsive for about five minutes.  I kept saying “Ava, look at me.  Ava, look at me”  She was in her own little world and I’m not sure that she was completely awake.  Finally her eyes turned towards me and I realized she was in there.  Then the crying took on a new tone and a tantrum ensued.  She was throwing pillows, hitting the bed, kicking me, etc.  I called my husband who was still at work to see if he could talk her down; no - she grabbed the phone and tried to throw it.  She then hit the phone several times screaming “no talk daddy”.  After about 15 minutes she calmed down enough to lie down next to me and I rubbed her forehead until she fell asleep.  She woke up about every 45-60 minutes last night crying and flailing about.  She coughed in her sleep the entire night as well.  It was just a rough night for the both of us.  My husband took my son to school today so we could stay in bed until 8am and get that extra 1.5 hours of rest.  I imagine she’ll take a good nap today - fingers crossed!

Today’s title is in quotes because it is just that - a quote.  This is what I was told today while changing my daughter’s diaper at a Target store.  My daughter is 3.5 and a little tall for her age but between the autism and the sensory processing disorder is nowhere near ready for potty training/learning.  We were at therapy and she had her turn and my son was a few minutes into his when I noticed a foul odor emanating from her bottom region.  I checked her diaper and sure enough, she was the source of the odor.  I told the therapist I needed to go change her diaper and checked in with my son to make sure he was fine without me, he said “sure.”  We get down to the car and I realize I have my old car and not my new car which means I have no wipes.  Target is 1/2 mile down the road and we are only ten minutes into a 50 minute therapy session so we head off to Target.  After finding the wipes we head into the bathroom.  I carefully release the latch on the changing table, line it with paper towels, and lob my 3.5 year old daughter up there.  Mind you she’s as big as the table but where else am I going to change her? 

A mother and a daughter were using the restroom and when the daughter came out (about Ava’s age) she commented to her mom about the baby getting a diaper change.  Ava calls any kid a baby so I thought it was cute.  Then the mom opened her mouth and out came “That’s no baby, she should use the potty like you.”  Oh great, its one of *those* moments.  I thought that was the end of it but evidently the mom felt the need to educate me about parenting my daughter and looked at me and said “she should be potty trained.”  Yes, this was a complete stranger.  Today has been a rough day and usually I have something constructive to say but no not this time, all she got from me was a “shut your cakehole.”  Wow, look at my maturity just shine through! 

Quite frankly I’m tired of the comments I’ve been getting the past week or so.  People aren’t even being well-intentioned about their comments, they are being downright rude.  I am tired of saying “she has autism” and then going on to explain that yes she really does have autism even though she smiles and is verbal.  The whole “she has autism” comment just opens up a new conversation line for me that quite frankly I’m tired of discussing.  I am not embarassed by the fact that my daughter has autism but I am just tired of judgmental people saying things that are really absolutely none of their business.

 To piggy back on the whole dreaded autism tantrum post; if you see a child doing something that you think isn’t appropriate for their age please pause for a moment and reserve judgment.  There are often-times unforseen needs that a child may have leading to such behavior.

So here I am at the end of a nice holiday and I open up one of my favorite mommy message boards and I see a post questioning the link between autism and terbutaline.  Great, I’m just over my mommy guilt wondering if and how I may have caused my daughter’s autism and I see a post like this.  When I was pregnant with my daughter I suffered from preterm labor; my cervix was dilated and thinning at 26 weeks.  I was given steroid shots to help mature her lungs and terbutaline and mangesium sulfate to stop the labor; the labor stopped.  I was then put on bedrest for the next 10 weeks and took terbutaline daily.  My sister, who also experienced preterm labor, was on a terbutaline pump (intravenous via her leg) for a few months of her pregnancy as well.  My nephew has experienced no developmental delays.  Ava, on the other hand, has been delayed pretty much from the start.

 I certainly don’t have the magic answer with regards to the origins of autism but seeing something like this certainly doesn’t give me a warm fuzzy feeling.  Many of the mothers who responded to the post said that they, too, were on terbutaline and now feel guilty about not researching it.  The original poster shared a few studies: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16417856&query_hl=2&itool=pubmed_DocSum and http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17400887&query_hl=25&itool=pubmed_docsum .  One is from 2005 and another from last month.  I decided to poke around the web a bit and found this site:  Terbutaline Lawyers.  The domain was registered in 2004 so the suggested link between terbutaline and developmental delays/autism goes back at least that far.  I was trying to find the origin of the studies first suggesting this link but was unsuccessful. I am curious how far back this goes. The poster on my mommy board was curious why this link wasn’t discussed in the media as a possible environmental trigger. My guess, without regards to whether or not I support this theory, is that not as many women are affected by the terbutaline plus autism combination as are by vaccinations and autism.  I am just using this as an example as it seems that the vaccine/autism link is the most popular and therefore widely recognized theory.

Whatever the case may be, my daughter is my daughter and I take each day a step at a time. Each night when I go to bed I look forward to what the next day will bring me. I have two wonderful children that I am very thankful for.

PDD-NOS stands for Pervasive Developmental Disorder Not Otherwise Specified and is a real grey area for me as someone who is new to the world of autism spectrum disorders.  I don’t read the newspaper in the morning, instead I read blogs.  One of the blogs that I regularly read is Ballastexistenz over on the autistics.org website.  Yesterday morning she published a great post entitled “What PDD-NOS officially means.”  It is an informative post and I wanted to share it with the readers of my blog.

Ava has a diagnosis of autism (also known as autistic disorder) but during one of the meetings with the psychologist who just did Alexander’s testings she told me that she could diagnose Alexander with PDD-NOS. Evidently he fit the criteria for PDD-NOS but she felt that an anxiety diagnosis was more accurate. We are to come back in six months if the issues don’t resolve after we do play therapy and then at that point she may make a PDD-NOS diagnosis. Do I want to hear that? No, not really. However a diagnostic label doesn’t change who my son is. Now that I have a better idea of why a PDD-NOS diagnosis is usually made I am more comfortable with one, should it come to that point.

I’ve posted about the dreaded autism tantrum before but I’d like to revisit the topic again.  My daughter’s tantrums are progressively getting worse and worse.  I really feel bad for the wee one as she just loses complete control during these periods.  I think I have it pinned down to a language problem.  You may be thinking “well, duh” but she’s verbal so I didn’t really think twice about it being a language issue when it was first mentioned.  Her expressive language has gone through a growth spurt lately but her receptive language is stil lagging quite behind.  Even though she is verbal she has no ability to convey her feelings and most of her wants and needs. We do have a limited picture board that we use but it hasn’t proved useful during the tantrums to help her communicate why it is she’s having a tantrum.  I am going to look into getting another board for feelings/emotions to see if that helps.

Today’s tantrum came out of nowhere, like most tantrums.  She’d been having a relatively decent day; preschool went well and she did well in the car on the ride to pick up her brother from school.  We get home and as we walk into the garage she stops in place and screams at the top of her lungs; she was beet red and completely stiff.  I knew she was mad by her expression but I didn’t know why.  When she’d run out of breath she stopped, inhaled, and let out another scream that was longer and louder than the first.  I closed the garage and once it settled down she ran to it and started kicking and hitting it while screaming.  I somehow coaxed her into the house, screaming and crying the entire time, and once the house door closed she attacked that with the same fierceness she had attacked the garage door.  I got her into the living room and did a cursory check of her while dodging flailing limbs and there appeared to be no injuries, splinters, bug bites, etc.  In the middle of this, probably a good seven minutes in, she yells the word egg.

Ah hah, now I know what is wrong.  She had her little Easter basket from school and her pink plastic egg had fallen out.  We go out into the garage and I open the garage door and she bolts for the road screaming all the way to the end of the driveway before I was able to catch up with her and get her hand.  We then walked around the car and found the pink egg sitting there on the ground just waiting to be picked up.  She said “egg” again and that was the end of it.

I don’t know why she reacted the way she did initially instead of saying egg then but I am glad that something in that little mind of hers clicked and she was able to say egg so we could resolve the issue and move on.

To explain or not to explain, that is the question. 

 When I am out in public and I see other children Ava’s age doing ‘normal’ 3 year-old things and Ava perhaps off in her own world doing her own thing I often wonder if I should explain it to people who inquire about it.  Ava has times where she can pass as a neurotypical child but if you look closely you’ll notice the nuances between her and her playmates.  However those times where she stops what she’s doing to stim I always get nervous and wonder if I need to explain it.  I have tried saying “she has autism” but I get these looks like “are you kidding me?”  Ava has an endearing smile and in the past few months has become quite aware of her surroundings.  She is not severely affected by autism but she is most definitely affected.  In these situations, once I’ve said she has autism, I then feel like I have to defend it.  I have discovered that the majority of the general public is not aware of autism and the many ways it can manifest.  I was also one of these as I had no clue Ava could possibly be autistic and was a bit surprised by the diagnosis.

I’m new to all of this so while I am comfortable with Ava and her ‘quirks’ I still don’t know how to respond to inquiries, looks, etc when we’re out and about and her “autism is showing“. I’m not usually one to care what other thinks, I’ve always danced to the beat of my own drum, but I find myself feeling nervous in some situations.  When she threw her monster “autism tantrum” at Sea World I smiled and made sure she didn’t injure herself or anyone else; that’s my goal in those types of tantrums.  The looks and comments that I received from everyone just made me uncomfortable in my own skin.  Why should it matter though?  The answer is - it shouldn’t.  When someone asks her what her name is and she doesn’t respond or responds with something that makes no sense like ‘chocolate’ I feel the need to jump in and explain it away.  Is this the right response?  I just don’t know.

I have to get to a point where I have thick skin with regards to the public.  If Ava wants to stop in the middle of the mall to spin and spin then I’ll just make sure she’s in an area without much traffic until I can get her redirected into doing something else.  Sometimes she’s easy to redirect and sometimes not-so-easy.  When given a choice of tantrum or spinning I always choose the spinning.  Hopefully one day, as time passes and I get used to things, I won’t be so nervous and feel the need to explain it to everyone who looks at us weird.

If you are anything like I was when I first thought my daughter might possibly be autistic then you have scoured the web for online autism screening tools.  I took most that I could find and even printed out a few to take to the psychologist.  Some professionals look down upon these tools and others are thankful for them.  Our psychologist was thankful for it as it gave us a good starting point for conversation regarding my concerns about my daughter and her behaviors.  I decided to compile a list of tools that I found; most of which I have used personally.  Some are free, some require a small fee.  I hope that you find this useful.

• Modified Checklist for Autism in Toddlers (M-CHAT) - This is a free screening tool.  You will need to score it with the M-CHAT Scoring Key.
• Checklist for Autism in Toddlers (CHAT) - This is a free screening tool that should be used at a child’s 18-month well child checkup. 
• Parents’ Evaluation of Developmental Status (PEDS) - There is a fee to use this service.  The M-CHAT is administered online for no additional charge at the completion of the PEDS questionnaire.
• Childbrain’s PDD Screening Questionnaire - This is a free screening tool.  Please make sure that you answer the questions based on the directions given as they give detailed information for answering each question. 

Again these are just screening tools and do not constitute a diagnosis.  Only a professional will be able to make an accurate diagnosis for your child, should one exist.  However I found these tools very useful in expanding my knowledge about my daughter and her behaviors and it also helped launch good dialogue between myself and professionals regarding her issues.  If you know of an online screening tool that I don’t have listed here, please leave a comment with the link and some basic information and I’ll add it.

A new study published in the Archives of Pediatrics and Adolescent Medicine focuses on enabling an earlier diagnosis of autism by determining a baby’s response to their name at the age of 12 months.  The researchers studied two groups of children; the first group was a control group and contained children who were not at risk for developing autism.  The second group was children who had an autistic person in their family.  Every single child in the control group were able to pass the test by responding to their name at twelve months; approximately 86% of the children in the second group passed.  These children were followed until their second birthday and 75% of them were diagnosed with developmental problems.  Of those children who went on to eventually receive an autism diagnosis, half failed the name test at twelve months. An abstract of the article can be viewed here: A Prospective Study of Response to Name in Infants at Risk for Autism

 In looking back it was right around that age, twelve months, that my daughter started responding to her name.  I’m not sure if it was right before or right after but it did seem much later than my son.  My daughter seemed to develop her motor milestones within the range of normal but her language was late to develop.  I listened to well-intentioned family and medical personal that she was the second child so would talk later and that everything was fine.  I’m still a bit annoyed about the wait and missing out on early intervention services but I know that the only direction to go from here is forward.  Having a diagnostic tool like this might have been beneficial in my daughter’s case.  Of course this name test isn’t an end-all be-all for diagnosis but just another tool, one of many, that are being discovered to help aide in an early diagnosis of autism.