Mutterings Of A Mindless Mommy

For those that celebrate, Merry Christmas. 

 2007 will go down as the first year both of my children “got it” with regards to Christmas.  My son has always understood it but prior to this year my daughter didn’t.  A family tradition we have is that Santa stops by our house just after dark on Christmas Eve to surprise the kiddos with a special Christmas gift before he heads off across the world to deliver other toys.  Last year my son hid from him for a while.  Once my son finally acknowledged him he spoke to Santa with his back to him basically.  A tad bit anxious but we didn’t push it.  My daughter was comfortable with him as she was curious what was in his big red sack.

This year the second the kids heard the jingle of the bells my son hid again but my daughter beelined for the door.  She peered out the window and gleefully screamed “Santa!”  My son got a huge grin on his face so I told him I’d hold his hand and we’d go see what was up.  He said “I have anxiety” and I told him it would be OK, we’d just go see.  Within seconds he reached his comfort zone and started in talking to Santa.  Santa surprised my daughter with the much desired blue Cinderella dress that she asked for and my son was the very excited recipient of a new game for the Nintendo DS (Mario Party DS).  They continued to talk to Santa and even sat on his lap (no visits to a mall Santa this year).  When it was time for Santa to go they both gave him big hugs.

Now I know Christmas isn’t all about Santa or presents but for me it was heartwarming to see both kids really get into it this year.  Definitely a lot of growth on both of their parts. 

This is a bit off-topic but I do have the catch-all category of Mutterings so it has a place to go.  I wanted to take a minute to brag on my father.  He and a friend are starting up a new company called Superstition Wilderness Adventures.  They will lead hikes into the gorgeous Superstition Mountains here in Arizona.  My dad is a nature lover and makes a point to pass on his knowledge about the wilderness to my children as well as my nephews.  He has a true passion for the outdoors and is taking the leap and turning his passion into a dream-come-true.  My dad and the co-founder of the company are both members of the Superstition Search and Rescue so not only are they two of the most knowledgeable men with regards to the Superstition wilderness, they are also more than qualified to be hike leaders.  Their knowledge and passion for these mountains will undoubtedly lead to a fantastic hiking experience for all.  I’m proud of you dad - having a dream and going after it; you’re an inspiration to all.

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. 

Wow, it has been nearly four months since I last posted.  Life happened.  Actually something really big happened, I decided to return to school to finish my bachelor’s degree.  For the first time since 1994 I signed up for a college course.  Wow, 13 years - amazing.  I am considered a junior but since I switched majors I am busy taking a few 100 and 200 level courses that are required for my new major.  What is my new major you may ask?  Speech and Hearing Science.  Yes, that’s right, my goal is to become a speech-language pathologist.  I feel drawn to the field after I’ve seen the strides my daughter has made in the past year with the help of an SLP plus the gains my son has made with the SLP-led social skills group.  In addition to being a parent of children who receive speech therapy I was also a participant in speech therapy as a child.  I could not pronounce my Rs; it took two years of therapy before I was able to do so.  I am in my mid-30s (gosh it hurts to say that!) and I still remember the day I pronounced the word mirror correctly.  Think about it, the word mirror has the R sound in the middle and the end of the word.  For years it was miwwow, then I progressed to mirrow then finally I managed it all…MIRROR.  Triumphant at last!  I then graduated from speech therapy.  I’m thinking my experience as a patient and a parent will help tremendously when it comes to actually being a practicing SLP.

 As part of my return to school I have joined NSSLHA(pronounced nish-luh) - the National Student Speech-Language Hearing Association; NSSHLHA is a part of ASHA- the American Speech-Hearing Association.  The NSSHLA chapter at my University held a brunch and silent auction last week and I decided to attend.  I was absolutely nervous about attending because my courses for the Fall semester were online and I had only been to campus one time.  When I arrived I got the nerve up to ask a couple of girls if I could join them at their table.  I soon found out that everyone in the room was either a 2nd year Master’s student or a Doctoral candidate.  The only undergrads, aside from myself, were sitting outside working the raffle ticket table.  Boy did I feel out-of-place.  Anyhow the conversation turned towards internships, IEPs, METs, etc and I was able to jump right in on the conversation.  I also met a few professors but shied away from the two Deans in attendance.  All-in-all it was a great experience even though I was so nervous going in to it.  My courses for Spring 2008 are also online but starting in the summer I’ll be on campus - I’m planning on taking Physics 101.  Don’t you know I’m now kicking myself in the butt for not taking the AP Physics exam in high school!  *laughs*

In my hiatus from blogging the one year anniversary of my daughter’s diagnosis came and went.  I made a little post about it to some friends and am going to add it here and post-date it.  It’s been a long year and something I’d like to memoralize on my blog. 

One year ago today the doc that had been assessing my daughter said “she is autistic.” Of course it wasn’t too much of a surprise, once we started the testing I knew the direction things were going. It was a little bit of a punch in the gut but by no means devastating. Admittedly I was a little relieved because I felt I had more direction in her life. I think the only reason I remember the date is because it was the day before her 3rd birthday. Now here it is the day before her 4th birthday and I am sitting her reflecting on the last year.

It has been a year of tremendous growth, lots of backsliding, and a whole heckuva lot of fun. All-out meltdown at Sea World complete with judgmental parents telling me my child was spoiled. Numerous parents commenting on public freak-outs and diapers on a “child her age.” Lots of dirty looks, rude comments, and nice enlightening conversations on my part (depending on my mood hehe). What I do know is over the last year not only has *my* understanding and impression of autism and all spectrum disorders changed but so has that of all of my friends and family. My daughter is a happy, affectionate, and loving little girl and I am so thankful to have her in my life.

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!

Perhaps I should use the word meltdown instead of tantrum - however you say it, it is still the same thing.  Wednesday was my son’s first day of school and thankfully he had a good day at school.  Unfortunately that didn’t transfer over to his swim lessons that started about 45 minutes after school let out.  I had water and a favorite snack available for him in the car hoping that would help.  We got to swim lessons and he changed pretty readily and with a smile on his face got into the pool.  He’s usually a bit head-strong while in swim lessons so when he started out like this I didn’t think anything of it.  The class is just my two children and the instructor so it’s OK if he’s a bit spirited as no one else is missing out besides his little sis.

Well about halfway through the class things took a downward turn.  He was upset and didn’t want to do a dive.  He finally did a dive and then when the instructor helped him roll over to a back float (called the airplane) Alexander got mad.  Not sure why but he flipped, he started screaming, flailing, etc and tried to slap the teacher in the head.  She got him calmed down and he did his back float then came back to the stairs to wait while Ava had her turn.  When it came back to Alex he refused to get out of the pool and walk to do more dives.  When he finally got out of the pool he started kicking the toys into the pool.  At this point I stepped in and told Alex that he was done with swim lessons for the day.  We were walking to the door so I could dress him and he ‘escaped’ and ran back and got into the pool.  The instructor lifted him out for me (she’s great by the way) and I wrapped him in the towel and told him he could stand with me for the remainder of the class.  When it was over and Ava got out Alex grabbed a noodle and tried to hit the instructor.  Yikes! 

I know he was in sensory overload.  I know he was tired.  I know he had a long day.  I know it took all of his energy to get through school but I was still embarassed.  There was another mom in the room (at the other end of the large pool) who just kept staring my way.  I didn’t have it in me to say anything, I just led the kids out and got them to the dressing room.  Another battle ensued - Alexander refused to get dressed.  He wanted to wear his wet swim trunks.  I told him no because I knew the second he sat down in the car in them he’d freak out and want them off.  He hates staying in a wet swimsuit.  I ended up doing the majority of his undressing/dressing and a mom in the dressing room said “You’ve got a headstrong one there.”  I just smiled. 

Tonight should be interesting as Alex has occupational therapy at 3:30 (school is out at 2:45).  Occupational therapy is always a bit of a challenge for him - going there after a long day (and week) at school is going to be exciting to say the least.  Fingers crossed it goes well!

Today was my son’s first day of first grade.  Now I know that he ‘officially’ became a first-grader after his last day of Kindergarten but this made it more real for him.  We got to the school nice and early so we could find a parking spot and then the whole family went in.  The first point of discussion was the playgrounds.  Alexander insisted that his old playground was only for kindergarteners but I explained that it is for first-graders as well.  He wasn’t having it so we had to find a teacher who informed us that yes, he uses the same playground.  Off he went to play for a few minutes then we went to the bag line as his teacher was there handing out name tags.  I found out where to pickup Alexander after school and told him where I’d meet him. 

While standing in line one of his classmates from preschool and kindergarten came up and he yelled her name, hopefully seeing her made him comfortable.  I also found out that his best friend from preschool is back at this school for first grade and showed him to Alexander, Alexander just said “oh”.  Hmm, no enthusiasm there.  It was time to walk into the classroom and Alexander said bye and off he went.  That was it.  He’s now been in class about an hour - I hope he is having a fantastic day!

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.