Mutterings Of A Mindless Mommy

Thank heavens I had a vacation before my son’s dentist appointment - the day started off rough and just got worse.  My husband and I had a great time in Vegas and got back Monday afternoon - we met my parents and the kiddos at dinner.  After dinner we headed back to the house for a relaxing evening.  Alexander was not to take anything for sleep - no melatonin, no clonidine, nothing.  Ugh.  Not only did he have a hard time falling asleep, he had a difficult time staying asleep.  Then morning comes with a surprise accident in bed, he hasn’t done that in ages and we don’t have a waterproof cover.  So our day started about 1.5 hours early.  Not good because not only can he not eat or drink, we can’t give him his morning medicine (ADHD/aggression meds).

So the time comes for daddy to go to the airport for a business trip that he couldn’t cancel and for me to drop off my daughter with my mom.  We got to the dentist’s office about ten minutes early and Alexander was just as chipper as could be.  He didn’t seem nervous and was in a fantastic mood.  The dentist came to talk to me and told me what was going to happen then they went ahead and checked Alexander’s lungs, pulse, and blood pressure.  Everything checked out and per his weight he was to have 3.7 of Versed (I think mls) but they chose to give him less - 3.5. 

We were taken to a little room with a chair, TV playing Cars, and a little mat, pillow and blanket for Alexander. He was given the Versed.  At five minutes in the dentist checked and he was still acting normal.  At six minutes in the giggling started.  At seven minutes in he said he was missing a finger.  At eight minutes he wanted to lay down on the mat and at nine minutes he said his hands felt funny.  Ten minutes in I was in tears from laughing so hard and he was just giggling.  Someone came and picked him up and carried him back to the treatment room. 

About 15 minutes later the front desk calls me up and says that the tooth ended up being the “worst-case scenario” - he needed to have it removed.  I gave the go-ahead and then after about ten more minutes he was done.  I settled up the account and the dentist came to talk to me.  He said that all of the rest of Alexander’s teeth look great - his enamel is good, no cavities etc.  He said that this was an anomaly as usually with a cavity to this extent there are other problem teeth.  He said Alexander did great and giggled throughout and would pause to say “what the heck?” - yup that’s my boy.

I then went back to the little room and Alexander was on the mat with cotton in his mouth.  The dental assistant told me they were trying to keep him from chewing his cheek and tongue.  I took over duties and ended up picking him up and holding him in my lap.  He was still giddy and I had to take a picture of him to show him that his lip/tongue looked normal even though they felt weird.  About 15 minutes later, all hell broke loose.  The Versed started to wear off and Alexander became more aware of the numb lip feeling.  For a sensory-defensive child, especially one who is orally defensive, this was not a pleasant sensation.  He started his banshee screams and the mommy abuse began.  I could get him distracted for short periods of time but not long.  The dentist and assistants all came to help distract him as well.  After an hour he passed the test to go home - the ability to stand up, take a few steps, and blood pressure/pulse were OK.

Thankfully I had the foresight to engage the childproof lock on the car door.  The ride home was a nightmare.  Alexander kicked and screamed and generally thrashed about.  I even managed to get kicked in the head while driving 65 mph down the freeway.  Thank heavens he’s a stickler for the seat belt because he never unbuckled.  He started off telling me he was leaving me and moving in with Auntie.  Then started the “I want to kick your butt, no really I want to kick your butt” which was followed by “No, I’m going to kill you.”  After awhile that changed to “I just want to be dead.”  Alexander has never said anything like this before so I knew it was the medicine.

Once we got home I had to deal with a few more hours of these random outbursts/meltdowns.  He wasn’t able to just eat right away - I had to start with clear liquids and then move up to soft foods.   Once it faded off I kind of casually asked about his day and he’s one of the lucky winners who don’t have an amnesiac effect from the drug.  He remembered everything - from being carried to the chair to all of the things he said to me.  He said the leg straps felt weird but that he didn’t freak out.   He’d get this real sheepish look when I mentioned the car ride home.

Around dinner time he brings me a note that says “I love you mommy, sorry for attacking you.”  My heart swelled, I felt so bad that he had to feel like this.  I gave him a big hug and kiss and told him that not only was it mommy’s job to be attacked but that he wasn’t doing it, the medicine was.  He reassured me that he didn’t want to move in with Auntie, kill me, or be dead.  I told him that I knew that Alex wasn’t saying those words, that the Versed was.

The day ended with Alex and I cuddling in my bed.  He bounced back quickly and was at school yesterday.  I told my husband that if Alexander needs something like this again that I was not going alone - no way can I go through that again, it was physically and emotionally draining.  I’m not even the one that had to go through the tooth extraction!

Dental work, Asperger’s syndrome, and anxiety - those three phrases do not go together!  They are, however, my reality.  Well actually, they are my son’s reality.  He was complaining of a toothache on Friday night and yesterday I managed to get him in with a fabulous pediatric dentist who has experience with children on the spectrum.  The dentist’s niece has Asperger’s Syndrome so he “gets it.”  Alexander did great yesterday - he let the tech take x-rays which involved foreign objects in his mouth.  He also did a great job during the cleaning only gagging a couple of times; he probably only swallowed half of the fluoride this time!  It has been a year since his last cleaning (I know, bad mommy) but the sensory integration therapy and Wilbarger brushing protocol helped tremendously.

So the bad news is that he has a between the teeth infected cavity!  The dentist said no more raisins, gummy worms, fruit roll-ups, etc.  I let the dentist know that Alexander doesn’t like raisins and can’t have the other foods as he’s on the Feingold Diet which eliminates artificial flavors and colors of which gummy candy has.  I then went on to explain that Alexander doesn’t like anything chewy as he has low oral-motor tone and chewing is a chore.  I wish he’d eat raisins, it would help build his muscle strength in his jaw!  The dentist asked about juice - nope, not much in the way of juice either (maybe a few days a month).  So here’s my conundrum of a child with an interesting cavity.

So we’ll go back in two weeks and they will sedate him with Versed, then give him laughing gas, and follow-up with local anesthetic.  They did let me now they’ll wrap him in a Velcro blanket.  My son is tactile defensive and claustrophobic.  Dear God help us on March 11!  I explained it all to my son and practiced rolling him up in a blanket.  Thankfully he’s a smart guy so understood everything I said.  I think we’ll be fine before and during the procedure but afterwards is where I’m concerned.

Alexander is to skip his clonidine the night before and the day of the procedure he will not be able to take his Focalin XR nor his Risperdal.  Alexander is combative under stress and I’ve been told that Versed can make even the most docile child combative as they come out of it.  Woohooo, yay me!  Alexander is a scrawny little guy (a whopping 41 pounds now) but when he’s in the throes of an outburst someone always gets hurt.  My mom is going to try to come with me to the appointment so she can help me afterwards.  I’m going to stay positive and think that Alexander wil just be giddy and loopy coming out of it - I don’t want my butt kicked my a six year old!

If you’ve had experience with Versed - please, please share them with me.  I’ll take the good, the bad, and the ugly.

I posted earlier today that I’m not in Chess Mom mode; Chess Dad took Alexander to his second chess tournament.  I received a happy call from Alexander after every game who proudly proclaimed that he lost but had fun.  The final round was supposed to start at 2:00 pm our time; the phone rings at 2:03 - surely the game wasn’t over that quickly!  Chess Dad asks “what does a full-point bye mean?”  I explained that Alexander had a bye for the final round and instead of the typical 1/2 point that is awarded in the event of a bye, Alexander was receiving a full point.

Translation:  Trouble.

For anyone familiar with Asperger’s Syndrome, you know that change is not exactly a welcome event.  Routine is the name of the game and this is most certainly the case with Alexander.  He had an expectation of playing four games.  This expectation is not happening.  What did happen, is a meltdown.  Chess Dad quickly called back and said “you have to talk to him, he’s freaking out” to which I hear Alexander yell “I’m not touching the phone!”  I told Chess Dad to put it into numbers; Alexander likes numbers.  I said to explain to Alexander that there is an odd number of players so every week someone gets to sit out.  If there are 99 children, there are only 49 games.  This week he’s special and gets a point for just showing up.  I then followed up with a joke - “If that doesn’t work, just carry him out of there.”  I guess that is only partially a joke as I’ve had to carry both of the kids (on separate occasions) out of places before.

I feel bad for Dave as he doesn’t have the thick skin that I do with regards to rude comments from onlookers.  Hopefully Alexander takes it easy on him and just has a mini-meltdown.

Last month my son attended his first chess club meeting; chess club meets for an hour before school on Friday mornings.  That was his first, and up until today only, chess club meeting.  They went over the names of the chess pieces and the allowed moves.  That weekend my son and I played chess and I was surprised at how quickly he picked it up.  The second week of chess club the instructor was double-booked so there was no meeting.  The third week the instructor was MIA so there was no meeting.  Last night the new instructor, Coach Leo, called to confirm that yes he would be there this morning.  Sure enough, Coach Leo was the first person on the scene.  Alexander is now attending his second chess club meeting.

In these past few weeks we’ve been playing chess,both over our LAN and with the actual board. He gets a little obsessive with the pieces on the board and will kind of zone out as he lines up the pieces he’s captured so LAN play is a bit more productive.  I am obviously worse than I remember and he’s better than I gave him credit for - if I don’t pay attention he’ll beat me.  Our first LAN game ended in a draw.  I barely beat him the next two games and that was with me playing to the best of my ability.  I love how he’s fine when he loses a strategy game like chess.  Last year we were playing the game “Sorry” and as he realized he was losing he leapt over the board game at me like a lion after an antelope and attacked me.  Losing at chess he just says “let’s play again.”  Whew, I’m not in risk of bodily harm.

So this morning while waiting for the custodian to open the library up for chess club, Coach Leo mentioned a chess tournament that is being held tomorrow.  We’d have to register Alexander with the American Scholastic Chess Federation but would receive a magazine as well as be ranked nationally.  In the tournament he would play with other children in 1st - 3rd grade that are also beginners.  The only requirement to play in the tournament is that they know the rules of the game.  Four games are played and it is a zero elimination tournament, all children get to play four games.  Alexander’s eyes widened upon hearing of the tournament and he proclaimed his desire to go.  Seeing him enthusiastic about something is really great so it looks like I will be spending my Saturday in a waiting room with other parents of chess lovers.

What an interesting week it has been with regards to autism news.  The week started off with mass reporting of a new study confirming the fact that there is no statistical link between the MMR (Measles, Mumps, Rubella) vaccination and autism.  Yes, another study detailing this lack of a link.  Here are a few different blog entries discussing the study that I found interesting:

New Study Confirms No Link Between MMR and Autism at Autism News Direct

Surprise Surprise:  No link between the MMR and Autism at Autism Vox

MMR Still Doesn’t Cause Autism (and never did) at Left Brain/Right Brain

My daughter has had one dose of the MMR vaccine - she received it after her autism diagnosis.  She also had a nasty local reaction with a huge knot in her leg that didn’t go away for nearly six months.  About a year after she received the innoculation, we found out she was allergic to eggs - ah hah!

Now on to the other study of the week, Vanderbilt University revealed the results of their research study looking at the benefit of melatonin usage to help children with sleep problems who are also on the autism spectrum.  Melatonin is a mainstay in our house and we use it almost nightly.  From the study: 

“Twenty-five percent of parents reported they no longer had sleep concerns after using melatonin, 60 percent of parents reported the sleep problems had improved, 13 percent still had major concerns and only 1 percent (one child) had worse symptoms.”

My son falls into the 60 percent of children who have seen an improvement in sleep.  My daughter falls into the 25 percent of children who no longer have sleep issues.  Sure every now and then she has a sleepless night but between the melatonin and the weighted blanket, I think we’ve found the solution for her sleep problem.  Our pediatrician is one of the more progressive-thinking doctors in the area and suggested melatonin to us over a year ago.  Go Dr. L!

More Autism Speaks controversy - this time the organization has sued the owner of a website that was a parody of the Autism Speaks site.  The website, http://www.ntspeaks.org, is no longer online after receiving a cease and desist type of letter from Autism Speaks’ lawyers.  Evidently the owner of the site was being sued for $90,000 for, among other things, copyright infringement.  If you noticed, I used the word “was”; the lawsuit has been dropped.  The individual being sued just happens to be underage so Autism Speaks dropped the lawsuit creating a bit of a chuckle among the supports of NTSpeaks. 

Yesterday, the owner of the NTSPeaks site (known as abscout) states he is willing to be interviewed on the topic.  For more information on contacting abscout check out his post on aspiesforfreedom.com.  For more fun on the topic view a post on the Autism Speaks message board started by the one, the only, Autism Diva!  As of this blog post there are 10 pages of responses to the Diva’s post.

Many autism and Asperger’s parents groups in Arizona are trying to get a bill out of committee that would require insurance companies to provide insurance for autism, Asperger’s Syndrome, PDD-NOS and other spectrum conditions.  Arizona would not be the first state requiring such coverage but would most definitely be one of only a handful of state’s mandating this.  This is a very important topic for me.  In Arizona, only children with a diagnosis of “autistic disorder” qualify for services past the age of six.  What this means, for me, is that any therapy needed for my son comes out of my pocket.  At sessions that can average $100/hour, the money adds up quickly.  If this bill were to pass then a huge financial burden would be lifted from my shoulders, and from the shoulders of many other parents in Arizona.

A candlelight vigil to support this autism insurance bill will be held on January 29, 2008 at the Arizona State Capitol.  Organizers are hoping that with a large turnout legislators will see just how many people are affected by autism spectrum conditions in the state of Arizona.  I will be sure to post updates on the topic as they become available.

This year, my husband’s company offerend an insurance plan that would provide therapy for children with developmental disorders through the age of six.  I am glad for their forward-thinking but unfortunately for us my son is already six.  Had this plan been available a year ago we likely could have saved thousands upon thousands of dollars. 

My son, who will be six years old tomorrow, has started having very aggressive meltdowns.  These are different than previous meltdowns as there is an obvious level of rage involved.  I’ve previously posted about two of his recent tantrums (Tantrums Take Two and Tantrums - Again?).  Thoseseemed to be a trigger for even more.  If he has an expectation in his mind that is not met he freaks out.  One morning he woke up early and climbed the pantry to get to a new box of cereal; he was sneaking food.  He does this all the time yet he’s still more than 10% underweight.  The rule in our house is that if you sneak a food item you do not get any of that food item again that day.  So he was not able to take some of the dry cereal to school.  My sweet little boy instantly changed; it was like he was suddenly filled with rage and he just had a meltdown.  He was yelling, screaming, hitting himself, stopping his feet, and slamming his door against the wall.  He had two hands on the door and was slamming it into the wall just as hard as he could.  Then in an instant it was over and he was my sweet little boy again.  Woah turnaround.

We managed to get in to see his psychiatrist on a cancelled appointment (to avoid a month-long wait) and she has suggested that we start Risperdal.  She wants to start the dose very low, 1/2 of a .25mg table.  She said that it is very good for aggression and rage in spectrum children.  Being the avid researcher that I am, I started reading up about it and sure enough on all of my autism/Asperger’s groups and message boards there are many parents whose children are either currently taking Risperdal or who have previously taken it.  I waited until I’d done enough research to be comfortable and then started him on it Saturday night.  I wanted to make sure I was around on the day following his first dose to ensure that he didn’t have any odd or noticeable side-effects.  Thankfully all has gone well. 

In my research I found that one of the most common side-effects is increased appetite and as a result weight gain.  If this is something that can be kept in check this could be very beneficial for Alexander.  Even if he gained 1/3 of his current body weight he’d still be within the range of normal.  He’s only taken it for three nights but thankfully we haven’t had a full-on rage-y tantrum.  Fingers crossed this works!

I have previously discussed tantrums - if you’d like to read up on my post check it out here:  The Dreaded Autism Tantrum.  Today I am going to revisit that topic but the subject is my son, not my daughter.  My son will be six in a few weeks and has comorbid diagnoses of ADHD and Asperger’s Syndrome.  On Friday night we went for an evening/night hike with my dad, sister, and nephews.  My dad is a member of the search and rescue team for the mountains we went into so we were in good hands.  We had a lot of fun - got rained on, played with millipedes and frogs (well me, not Alexander hehe), and got a great workout.

When we get back to my parent’s house and get in our car to go home (we live 3.5 miles away) my son quickly asserts “I am not getting a shower.”  I kindly let him know that he is getting a shower and explain to him that we were rained on, we were sweaty (100% humidity), we were dirty, and we both absolutely needed a shower.  He reiterated that he was not getting a shower.  I didn’t bother arguing with him as it was a moot point.  The battle began when we drove into the garage.  Alexander refused to exit from the vehicle.  I closed the garage door and then went into the laundry room (right off of the garage).  I laid the door against the door frame but did not click it close so I could listen to Alexander.  When the garage light went off he screamed so I quickly went out there and he decided to get into the car.  Holy heck the tantrum of all tantrums began.

 He immediately started screaming - not words, just noises.  I asked him to not scream because daddy and his sister were asleep.  He responded with a louder scream, again not words just noises.  This woke up my husband who came out and helped me undress Alexander.  Alexander is a wee little guy, tipping the scales at a whopping 36lbs (he’s 46″ tall) but wow did he have some power in him.  He was kicking, punching, screaming and then suddenly he said his first words “I’m going to kick your butt.”  My husband looked at me and we both tried to stifle a giggle - I don’t think either of us have ever seen Alexander this mad.  He was in total meltdown mode. 

We finally got his clothes off and I started walking with him down the hallway and then he started in on me - punching me, slapping me, kicking me, etc.  I ignored it and made sure the water temperature in the shower was appropriate.  So I put Alexander in the shower and he yells “I’ll do it myself!” and then closes the curtain and starts punching me through the curtain.  I step around the corner and not 20 seconds later he starts to get out.  I was OK with that because he at least got a rinse off but he had tons of shampoo in his hair.  I told him that but he was not going to let me rinse it out.  I told him he could just lean his head over the tub and I’d pour water on it with our cup to get it out - nope, not gonna happen.  Well I managed to get him in position, turn the water on, and fill up the cup before he turned the water off.  I poured it over his head and got the shampoo out which evidently made Alexander even more mad.

At this point Alexander decides to attack the shower.  He grabs the handle and yells “I’m going to break this” and proceeds to tug at it to try to break it.  I took his hands up and picked him up and my husband stepped in with the towel.  Alexander demanded to go to bed wet and I said that was fine so we let him go.  He runs into his room, gets on his undies, and then wants us to tuck him in.  BAM - tantrum is instantly over.  It was like he flipped a switch.

I feel bad about making him take the shower but it was something that really needed to be done in my opinion.  We were so sweaty it was disgusting - our clothes and hair were completely soaked.  Alexander seems to have moved on from the moment, now I need to do the same.

Alright I’m hopping back in the saddle again.  My life has been in an absolute downward spiral lately and I feel like I’m suffocating.  I’ve decided that I absolutely must return to blogging.  It is a sanity saver for me.  Without going into too much detail (for risk of boring you to death) the prospect of being a single mother to two spectrum kiddos has been lingering on the edge of my reality.  Right now it doesn’t appear that this is the direction my life is going to take but who knows what the future holds.

On to topical information…

The Autism Society of America’s 38th Annual National Conference was held in Scottsdale, Arizona this past week.  It just so happens that this is within driving distance for me so I decided to go.  I’ve had two kiddos diagnosed as being on the spectrum within the last year I figured I could at the very least learn something useful during the conference.  I am so glad that I went, I learned way more than I expected and came out of it feeling inspired.

I listened to speakers discuss topics such as Potty Training, Asperger’s Syndrome and Bullying, and an absolutely inspirational speech given by two teenagers on the spectrum.  Jordan Ackerson (a 19 year-old recent high school graduate) and Elijah Wapner (a 17 year-old soon-to-be high school junior) shared their stories with the audience.  At several points during their talk I was near tears with a smile on my face and a warm fuzzy feeling in my heart.  A lot of the parents there had older children but I felt that it was important for me to attend this discussion even though my children are still so young. 

One of the hardest parts post-diagnosis for me was wondering what, exactly, my children’s future may hold.  I was able to let go and move on when I realized that even parents of neurotypical children don’t honestly know what their children’s future may hold.  Seeing these two young men talk gave me a feeling of comfort; I know that my children’s future will be bright and while it may not follow the common path for neurotypical children they will most definitely be successful and happy in adulthood.  Thank you Jordan and Elijah for sharing your stories with us, words cannot express how truly wonderful I felt after that discussion.

The ASA has it’s negative sides but for the most part I was able to avoid getting drawn into any biomedical debates/conversations.  I skipped over the Kirkman and Great Plains Laboratory booths at the exhibitor exposition and instead went to the booths that pertained to me and my family.  I was able to stock up on some fun sensory toys (discounted and no shipping!) plus some handy social skills tools for my son.  One speaker informed our group that next year’s conference is going to be held at the Grand Palms Resort in Pembroke Pines, FL.  Well that isn’t within driving distance but I’m already making plans to go.