Autism Awareness - Tara's Part 2

You'll remember that I had promised a 2 part guest spot for Tara. I am pleased to wrap up Autism Awareness month with her!!

Part 2

'What Did It Mean?
The Autism diagnosis changed everything and nothing. We went to see all the same therapists and behaviorists, it was another piece to the puzzle that is Alex. It was simply a new filter in which to view some of his behaviors.

The biggest decision that came with the diagnosis was to medicate or not. The drug the team felt would work best for Alex was Risperidone (trade: Risperdal). I have worked in the drug discovery field for most of my adult life and while I believe that medication can absolutely be a life-changer in many situations, I’m also very aware of adverse effects that can occur as well. While this drug had been around for decades, there was very little info about the usage in pediatrics and the long term side effects that may occur with long term use in a patient population so young. I agonized over the decision; and eventually decided to give it a try.

For the first few weeks of the new medication regimen, the only changes I saw in him were his appetite and sleep patterns. He was ravenous and slept during the night. Around the third week, I was swearing that there were no other measureable changes. He could just as easily be having a good behavioral run. Then one day the toilet in his bathroom backed up and started to overflow. Now, normally, he would come running out of the bathroom screaming and flapping and grunting. This time, he walked over and simply said, “mama, there is something wrong with the toilet.” I remember standing there staring at him, thinking, ‘this was an extremely appropriate response to the situation. The drug is working”.

He took the medication for about two years and many of the aggressive behaviors we had seen in the past disappeared, others slowed and became more manageable over time. He was the best part of himself almost all the time. He was able to think without all the emotion and make better choices, he was able to participate in his academics and socially with this peers. Don’t get me wrong, he was still Alex….he still had Down syndrome and Autism, but the most extreme, impulsive and aggressive behaviors were lulled into submission with Risperidone

We saw a huge difference at school, the calls from the principle all but stopped. We found out that Alex learned more like someone with Autism than someone with Down syndrome. When we made these small shifts in the way information was presented to him, he started to read. He learned he really loved science and math (making his geeky mama so proud). He learned he really liked school. He made friends.

I pushed to continue to have a behaviorist work with Alex on coping skills in preparation for eventually taking him off the meds. We found the portions of ABA and other methodologies that worked for him and ditched the rest. Once we were not constantly on ‘high alert’ I was able to better understand what his behavioral triggers were and adjust my behavior and our schedule to better suit him.

Two years later we weaned Alex off Risperidone over summer break, hoping that the tools he learned and the maturity he gained would compensate. They did. Alex has been drug free since

If I have learned anything from this experience is that we don’t fully identify with any one thing or diagnosis. I’ve learned to ‘work the problem’ and not bind (or blind) myself by looking only through the filters of a specific diagnosis. I no longer Google ‘teach to read Down syndrome’ but just ‘teach to read’ and I find the best parts of each methodology and cobble together what works best for Alex.

I learned that too much information clouds the view. I learned to surround us with experts and to respect their expertise in the same way that I expect them to respect that I am the ‘Alex’ expert. I learned that while he needs structure, he needs me to be flexible and resourceful. I learned how to be a good advocate for my son and now on to the next phase….letting go and allowing him to advocate for himself.'

Chicken or the Egg

Last Sunday was Easter. It was the most AMAZING weather, with what has happened in the last 24 hours, makes it feel like forever ago. BUT, I need to share this before I forget!

We had planned to get to the early service, which we missed getting out the door on time by about 10 minutes...and for Easter, that is just so not acceptable. So we got to continue our 3 year streak of watching Narnia...We got to the second service to enjoy church together. At it's conclusion we ran up to Tennessee to join our families for lunch and an Easter egg hunt...and just general family time...

The fun story that I simply MUST share is on the egg hunt. Elise likes the idea of the egg hunt, but she is not as fast as her sister or cousins in seeing the eggs or getting to the eggs...so her egg stash looked more like her two year old sister, than the brimming baskets of the rest of the hunters...fortunately, she enjoys it so much, she spent half the time admiring the eggs she had already found. She did eventually notice that she didn't have as many as the others so she started looking harder in areas that had already been scraped clean...finally, she went up to my in-laws storage shed and pointed...I said "What? I don't think there are any eggs there..." She insisted, "Chickens!!" What? More insistantly, "Chickens!! Eggs!!" OH!!!! "You think there are chickens in the shed?" "Yes!! Eggs!!" "And you think they have more eggs?" "YES!!"

So, stratch this whole hunting the eggs thing...let's go straight to the source!!! You gotta admire that kind of proactive decision!! :)

Unexpected Blogcation and Teeth

I really did not intend to allow my blog to languish so long without checking in!! I am trying some new workout things which have resulted in my being EXHAUSTED and an inability lift my computer without pain...so, there you have my excuse, but no doctor's note, I guess...

Yesterday I had a migraine anticipating today. For good reason.

Elise went to the dentist this morning at 7:30 AM. Ack. Pain. Suffering. We had to get up at 5 and leave at 6:15 to get there rushed and slightly late...I hate Atlanta traffic.

But as usual, I digress. Elise asked if she was going to school last night and I told her no, she had to go to the doctor. She wanted to know which doctor. I told her the teeth doctor. Aaaand the flipping out commenced. She HATES the dentist. Despises the dentist. Always has. She has never been hurt in the dental office, I think she shares my abhorrence of the sensory overload that metal instruments cause while scraping your teeth. It just about makes me come unglued.

I have tried telling her what to expect. We've checked out books about dentists and teeth. I have told her what a wonderful girl she is being while getting her teeth cleaned, despite the evidence to the contrary. I have held her so there are no strangers holding her. I talk reassuringly to her the entire time each and every time she has ever gone. And we have yet to get out of there without her attempting to bite someone. Anyone. It's usually me. I have gotten my hands, arms, leg (yes, LEG!) bitten. She got my jaw 2 times ago. She broke the skin, leaving a nice crescent moon of teeth marks...a la Twilight...

Oh. And there is screaming. And growling. We often get our own room. Screaming and growling such that she ALWAYS gives herself petechiae, tiny freckle-like bruises from the force of screaming...

Today, I am pleased to say that not only has she grown up enough to ask what we are doing the next day, but she comprehends it. This time, she spent the entire time, from the moment our truck pulled up to the parking garage until she was released from the chair, trying to negotiate a different doctor. "No teef doctor, no teef. Beep, Beep, Beep doctor? Poke doctor? Heart doctor? Ears? No teef, NO TEEF!!!" This is Elise-ese for every specialist she could think of...including Oncology. She despises getting 3-5 vials of blood taken (wouldn't we all?) for cancer follow-ups and endocrinology to monitor her Thyroid...but she was willing to take Even Them over getting her teeth cleaned.

As soon as they were done, she popped out of the chair like she was spring-loaded thanking them all for cleaning her teeth. She has shown her teeth to every single person we have seen all day. So they can admire her lovely shiny teeth. It's bizarre!

So, she spent her time in the dental chair negotiating (well, she didn't give up the screaming, can't stop everything cold turkey, right?), with only a few warning nips. Nobody got bitten. This is a day that will go down in the history books. Well...it should...but I am so incredibly proud of her and what today really indicates. She hates the dentist, that certainly hasn't changed. But she chose to use words instead of aggressive behavior to try and cut it short. That is, simply put, our ordinary miracle today.

Autism Awareness Guest Blogger - Tara

You know, one of my favorite parts about doing this blogging thing is all the amazing people I get to "meet".

I try and peek at people who comment on my blog...and I ALWAYS read their blogs when I find that they have one. This is how I found Tara. Her blog "Madness Ensues" is brilliant combination of life and the twists and turns life takes...Her son, referred to as "The Boy" (and described as being "chock full of chromosomes and surfs the spectrum"), is as delightful as his mama! I hope you'll check them out!!

Tara has agreed to a 2 Part Guest Spot. I am thrilled to have her, as I am always hunting people who are 10 steps ahead of me on this crazy path of life!!

"How Did I Know?

I didn’t. Alex was born with Down syndrome in 1995, and that was a pretty big diagnosis as far as I was concerned. My first child (my only child); I had no experience as a parent, no experience with a person with special needs, no frame of reference.

Alex hit his developmental milestones about when I expected -- a little late but not alarmingly so, except for his speech which was significantly delayed. He had a bunch of gastrointestinal issues that were addressed surgically in his first three years. He had a seizure disorder that kept me on my toes. My point is that I was a little busy. I was learning about this little person, about Down syndrome, about parenting, moving from California to Colorado and back to California, and I can’t honestly say if I had any inkling along the way of what was to come.

By the time Alex was three we hit our stride. The feeding tube was long gone. We had the PT, OT and S/L schedules down. We had moved into the school district and had our first IEP behind us. He was a quirky little kid. He had some sensory issues; he would only eat certain foods; he didn’t like to be touched unless he initiated the touch, he was particular about the clothing he would wear (and when) and shoes were the bane of my existence. He was a busy toddler, swinging and swimming were his favorite past times. He loved riding and taking care of the horses. He liked things orderly and was a champion with a duster around the house. He had a stubborn streak, but could usually be re-routed.

We missed the ‘terrible twos’ and went right into what I remember, not so fondly as the ‘tempestuous threes’, the ‘fearsome fours’ and the ‘frightening fives’. He gained quite a temper and became very aggressive to others and exhibited some self injurious behaviors like banging his head and picking at his fingers and cuticles until they bled. His stubborn streak was well defined. It was suggested to us by three separate daycare centers that we find a more suitable placement for Alex. We worked with behaviorists, therapists and doctors. Alex didn’t like loud noises, and was very meticulous about the way he played with toys. He would spend hours lining up all his cars or dinosaurs. There was a ‘right’ way to do this that was only apparent to him and a tantrum resulted if the ‘right’ way was interrupted. I was told this was all part of the Down syndrome package, atypical, but not unheard of. From everything I read, and I read everything I could get my hands on, this didn’t feel like the atypical Down syndrome behaviors. I kept pushing.

We went to specialist after specialist. Alex was diagnosed with Oppositional Defiance Disorder, Attention Deficit Disorder and Obsessive Compulsive Disorder over the next couple of years. Each of these diagnoses held some ring of truth, but never really felt right to me. For this reason I chose not to put Alex on any of the medications used to treat those particular disorders. We continued to work with the behaviorist, and once Alex hit four he started really talking and that seemed to help with some of the behavioral issues we were experiencing. But he was still very aggressive, having multiple tantrums daily and not sleeping through the night. His education suffered because so much time was spent on behavior that academics were almost secondary. Our life was very limited since we were dependent on where his mood fell at any given moment.

We eventually found our way to the Developmental Disabilities Clinic at UCLA - - Alex was 7 years old. They ran test after test after test, taking extensive background from me, his teachers, his therapists, etc. At the end of this process, I gathered in a room with the team who performed the screening (a physician, several therapists, a social worker, a teacher, and a psychologist). They told me of their findings and asked me if I was familiar with Autism. I knew the word, of course. There were children in Alex’s classes who we diagnosed with Autism, but I didn’t really know what it meant. I remember thinking, “Here we go again, another diagnosis”. I went home and read and read and read. I poured over the test results and compared and analyzed (It’s my coping mechanism; it’s what I do when I don’t know what to do). There he was, on the pages of books laid out before me. My son had Autism; there was no doubt in my mind. It fit. He fit. I think I’m one of the few people who cried tears of joy when hearing the word Autism. His official diagnosis is Down Syndrome-Autistic Spectrum Disorder (DS-ASD)."

Movie Recommendation for Autism Awareness

Today you get a movie recommendation for Autism Awareness Month.

Yes, I really said this. I am betting many of you did not go and read up on Autism. As much as you want to learn how to be more understanding and supportive, let's just be honest...IT'S NO FUN TO READ DRY OLD EDUCATIONAL STUFF.

SO, run out to Blockbuster or wander through your Netflix queue and rent Mozart and the Whale.

Seriously. It is excellent. Fun. Educational. Heart-warming. And pretty much smack on the mark for a lot of people. I mean it. How often do you get to watch something that is educational and a pleasure to watch? GO! Run!! Get it rented first!

Guest Blogger for Autism - Tina

Elise has several precious friends at school. One very dear one is Jameson. His mother, Tina, was gracious enough to share:

Jameson’s Story
"It begins with two older siblings getting ready to leave the nest for college. His brother going to North Georgia, a couple of years later his sister going to Georgia Tech. I didn’t know why I wanted another baby so badly, but the answer came when I realized that God knew I would not be able to handle empty nest syndrome. There are 2years between Jameson’s brother and sister, and 12 years between Jameson and his sister.

Jameson was delivered at 38 weeks by C-section for failure to progress. He was a big boy weighing in at 8 pounds and he had a huge head. He spent 7 days in the Special Care Nursery. I knew something was up the moment the nurses handed him to me in the recovery room. Couldn’t quite put my finger on it, but he was not crying, he was not awake, he was just there. Jameson had CT Scans, EEG’s and numerous other tests.

Findings were, reflux, VSD murmur, apnea, and a subarachnoid hemorrhage. We were referred to the Babies Can’t Wait program in the hospital, but I knew nothing about the program and knew nothing about the above diagnosis.

Jameson slept for the first 4 months of his life. I mean he slept; we had to wake him up every 4 hours to feed him, around the clock. So for the first 4 months, there was no cooing, gooing, or babbling, just sucking on a bottle every 4 hours. At his 2 month check up the pediatrician asked if he was tracking with his eyes. I replied no all this baby does is sleep. At that moment she told me that the subarachnoid hemorrhage that he had at birth could lead to cerebral palsy, and we need to get him in the Babies Can’t Wait program…. Why wasn’t I told this in the hospital?

The paper work was started and by the time Jameson was 4 months he was finally getting physical therapy. We stayed in the Babies Can't Wait program until age 3, getting speech therapy at age 2. Jameson started making noise at 12 to 13 months of age. I was always asking the pediatrician if she thought he might be autistic, because of all the delays, she would only say let's wait and see. At Jameson’s 3 year check up the pediatrician finally agreed with me, and we got scheduled at the Marcus Institute for a formal diagnosis. When we left the Babies Can't Wait Program we went to Challenged Child and Friends, an early intervention learning center with therapist and nurses on staff. Jameson’s vocabulary continued to grow, but no sentences were forming.

When Jameson turned 5 we entered the public school system, where he continues to grow and thrive. Jameson now is speaking in sentences, and can request the things that he needs or wants. He still has some sensory issues, hates long sleeves, but has learned to wear a jacket and long pants. Noises continue to be bothersome, but we have learned to deal and cope. Jameson is a very loving child that has taught us a lot."

The Sensory Spectrum

This is a little outside my comfort zone, but here goes. This is Autism Awareness Month...and I have spent a lot of time thinking this one over. How much do I share? I guess I've decided, a little bit of everything.

Autism is a big and scary word for many people. Whether you've thought about it or not, I am betting that you have an immediate picture that comes to your mind when you hear the word Autism; maybe "Rain Man", maybe someone in your past, a friend's child, but highly likely a worst possible scenario from the dictionary definition. What with all the stories about vaccinations causing it, if you are a parent, it has AT LEAST crossed your mind. (I'll save those arguments for another day...)

The spectrum of autistic tendencies is pretty broad, and the family of tendencies or issues can come in any combination. What characteristics make one child's diagnosis of "Autistic", may not be the same combination that results in another child's diagnosis...as a matter of fact, because of the almost limitless combinations it's highly unlikely that it will present the same among multiple diagnoses. The number one tendency that is almost unavoidable, is a struggle with social interactions. It also often partners with sensory issues.

This particular diagnosis was higher on my list of "things I was afraid of" than, say, Downs. Seriously. For years, I figured I was pretty much on the cusp. Just shy of an Autistic diagnosis myself. Then my lovely mother went back to school for a School Diagnositian degree. At which point, I decided she was seeing monsters in every closet as it were, because she came home and informed me that she thought I was a poster child for Aspergers. I blew her off. Then I started looking at the definition and researching it, and I believe she is pretty much right. EVERY SINGLE screening test that I have ever taken (including Facebook's), puts me in arm-chair diagnosis of it. My obsession with reading and my uber social family have acted like my own personal therapy. In retro-spect, it explains a few things. If you knew me in elementary, middle school, or even high school; I can see you sitting there going, "huh"...

So, needless to say, I watched my kids for the same tendencies. Thankfully, Gabriel has always been freaky social like his daddy. Elise has A LOT of sensory issues. Did I say A LOT?? However, a secondary diagnosis of Autism for Down Syndrome is often tricky to get, because the red flags can be clouded by the developmental delays that go hand-in-hand with Downs...it is a fairly common secondary, though. Amelia also craves social input, and talking...well, we're good...and I am still watching Charlotte... BUT, this is one disability that I am pretty familiar with.

Elise's first crush had Autism. Which was funny/tragic to watch, because she HAD to hug and kiss him all the time...and, yeah, he wasn't all that okay with that! This year she has another friend in her classroom with it. She loves him too, but not with as much adoration involved. (Jameson's mama is actually my guest blogger today. So, stay tuned!)

My heart goes out to the parents who fight this boogey monster every day. It's a tough one. Many things that you count on as a parent to offset the struggles of being a parent: the sweet exclamations of affection and the adoring snuggles...that is often missing due to this diagnosis. The sensory meltdowns that occur in public, the lack of a visible cue of the disability, makes the general public less understanding and less supportive than even Downs or other, more obvious, disabilities. Often, just the day-to-day communication, that we depend on to grow our relationships, is lacking or flawed.

To celebrate Autism Awareness Month, please take the time to educate yourself about it. Please learn enough to love the kids and adults with it. Please learn enough about it to support their parents and loved ones that live with it every day.

Some places that are a good start?

Autism Speaks

Dancing with Max

Hartley's Life with 3 Boys

Happy Autism Awareness Month!!

Happy Autism Awareness Month!! Wear your bluest blue, share your world with someone else or go offer a helping hand to a mama who could use it!!

Looking for bloggers who can share their story this month!! Talked one friend into it, if you're interested, email me at underwater9800@gmail.com!!