Tuesday, August 29, 2006

Taking the Disability out of Autism

And what is left? A person that's just different.

Leo began 2nd grade on Monday. It's Wednesday, and I keep thinking I ought to be documenting as always. It's a strange thing - I have nothing exciting to report about Leo (me, yes, see below). No issues, just stories about his "specials" like music, gym, art, and library. As with Leo's former teacher, Mrs. P. doesn't know he used to have an IEP. Time will only tell how his executive functioning differences/issues will play out. (see first grade, 6/22/06). I haven't figured out how to tag, sorry!

The way he processes will always be different. I'm guessing it'll be the same as 1st grade (talking out of turn, calling out answers, finishing sentences). His former teacher speculates this will still be his challenge, but that he'll be able to improve, slowly, over time. And it also depends on his new teacher and what her tolerance level is. Who knows. He isn't the only one doing this, but Leo has his unique reason why. On my list of stuff to worry about.

Weird. I spoke to an ASD mommy friend on the phone today - as with all of us, we are checking in with our friends to see how the first days of school went. I said, "You know, It's been very anticlimatic." First grade was the *big* transition. As I've been told by many people, 2nd grade is really like a reinforcement, a repeat of the concepts in 1st grade. Okay, that's fine - Leo is "one of those ASD kids" that excels academically.

The desire for sameness. Check. The desire for structure, predictability. Check. Knows the school inside and out, has his best pal in school, same bus, same driver. Check. He knew 80% of his classmates already - from our small town activities, some from kindergarten, some from 1st. Check (and nice!). He still gets to see his former teacher for hi-fives and hugs. Check (and bonus!)So far has no issues with school. He's doing the same thing he did last year, only the classroom is 3 doors down.

Leo's kid sister began kindergarten and now he sits with her on the way to school. They are extremely close, and I love that they now go to school together, and say hi occasionally during their day. Their best friends are also sibs (kind of creepy I admit), so it's quite a close-knit situation - we all know everyone's business, and it's transferred through the siblings. Another solidifying part of his life. A safe place to try new things, put himself out there. To grow.

And what about this new safe haven we've built for Leo? Knowing everything, the structure, vs. everything new, more chaotic and diverse?

The closeknit community - really wonderful families that have the same goals and values (aside from the super-Christian stuff). Everyone seems "the same", very Stepford, but not in a bad way. Just in a "sameness" way.

What if we had moved back to California and I went back to work full-time? A big cost-of-living difference. Private school a sure thing. Questionable neighborhoods, stepping over homeless on our way to the grocery store (well, HFS!). What if everything was new? Would Leo turn out more prepared for a cubicle in the future? For college? Am I fooling myself into thinking this is the real world? Is there a downside to creating this environment?

I moved every 6 months as a child. I don't remember any friends, except a picture I have of a beautiful East Indian girl named Marcie that "was my best friend". I can only recollect the photo and a few memories. And then there's the abuse and no parents to give me a foundation. As they say, "what doesn't kill you makes you stronger." I am living testiment. I'm sure I'm overcompensating, but I really wanted, ASD aside, to raise my children in a consistent solid environment so they could blossom.

Ahh...The comfort zone

Will Leo be ill-equipped to handle the real world? Given his difference, is this lifestyle a blessing or a curse? What about experience in chaos?, grown-up chaos? What are the downfalls, at age 7 (almost 8), to being exposed to to more diversity (it's quite white and Catholic around here, and Leo is half Jewish). Raising kids in a safe place - when is that not a good thing? WHat if Leo fell asleep to the sound of garbage trucks and sirens, versus bugs and birds, and you can see the stars like it was day? All the pets. The garden, being connected with the earth? I'm keeping my options open - charter high schoools, private schools for down the road. I want to be prepared for every forseable scenario. I realize this is impossible, but hey, I have to try.

Although Leo's environment is quite cookie-cutter, I try to live my life by example. I tell Leo I voted Democratic when it's a Republican town. I explained homosexuality, hurricanes, poverty, global warming, and other topics that don't gel with his (and my) fantasy childhood.

As always, I am reminded of how far he's come. How truly disabled Leo was. A bus will never be a bus. A hallway will never be just a hallway. I re-read the note from last year to edit for his new teacher about his "food allergies" and hypoglycemia. (He requires an "extra" snack in the afternoon since he needs to eat around every 3 hours). Boy has he become more independent! Leo's Autism no longer disables him. He still has ASD, and I love those contributions madly. I honestly do. But he no longer has anxiety, chaos, and challenges that are often associated with ASD.

And what about Mom?

I'm plugging away at my IEP goals for Leo. I am a list keeper since it keeps me really organized. Here is my Worry List for Leo:

1) Worry about Leo's calling out, and talking out of turn
2) Worry about soccer. This year they now add a practice to the week, and they actually play positions. Like the last couple years, this is regular soccer organized by the town. I wasn't welcome to participate in special ed soccer because of Leo's status (see discrimination for more on this). He's not the worst player, but he's not great. This should be interesting, to see how he can "juggle" what everyone is doing and what he should be doing. Theory of Mind comes into play, and I hope he holds up the ability to see intention amongst his fellow players. I hope he can hold his own, as many of his friends play, and he loves to be with his friends AND he loves soccer, especially since the world cup.
3) Worry that something else will come up where he'll stand out and it matters to him.
4) Worry if Mrs. P. actually "knows" about Leo's past. After all, we've been going to that school since Leo was just 3 - tiny short legs swinging from the big kid chairs in a cramped office for speech.... She's been there forever, and her classroom was close to where "the fireworks" of my tirades and other heated meetings took place. All of Leo's IEP meetings where held there and he got services from 3 to 5 there - 7 hours per week. And again, my worry is only because I don't want teachers to treat him differently, which is why we keep Leo's label a secret.
5) Will the "finishing sentences" thing manifest into a secondary disorder in the future, such as OCD? I know I can be very OCD.

So what else can I tell you about Leo? He loves soccer and football. He plays immediately when he gets home - very "organizing" for him. A nice transition. He has lots of friends that are very different. He used to only be attracted to the loud "boys' boy" kids, I think at the begining because their social cues are easier to pick up (the whole neighborhood could pick them up). Now he likes all kinds of kids, and his list of friends are as diverse as they can be.

Leo continues to be best pals with Sydney, his younger sister. She's quite precocious, so it's a nice match. sometimes they act like twins. They also share a room - bunks, so they just don't know life without each other.

Leo LOVES Lizzy McGuire. He watches the series, but insists his favorite is the movie where they go to Italy. He's not embarrased that he likes a "girl" show. Big news? The Cheetah Girls 2, the movie, just came out, and by god they love it. They've watched it every day since this weekend.

Topics? For some reasons he's asking a lot about Egypt. I can usually figure out the genesis of something I think is random, but for this I can't. He also likes anything travel related, and loves looking at maps and hunting for countries. He likes to know what countries are in which continent, etc.

He also is figuring out tornados, hurricanes, and other disasters. Funny - that's what happens when they can read the news. Leo will now read the Sports section of the newspaper (this happened on a plane on the way back from California this summer). Sydney was reading the front page, not understanding anything. All 4 of us were reading sections. I thought, WOW. We've transitioned.

And speaking of transitions, I began my job today as a preschool teacher - my 2nd year. This year I have 20 hours. Sydney began kindergarten. My husband had work per usual. We all had places to go this morning. Our own separate lives with our own goals. Scary, exciting, and fun, all at the same time. Life goes by so fast. I told a friend recently that it was quite disconcerting how time went by so fast now that I'm in the 40s (41). My friend said:

Pay attention.

Tuesday, August 22, 2006

Putting Words in My Mouth

Little Miss Sunshine

Finally, a fresh movie to feed the nonconformist in me. Welcome To The Dollhouse and Muriel's Wedding were the only movies on my short list. Sorry, but I'm from Los Angeles originally! The movie business touches just about everything there. Well now I have three! Honesty, perseverence, indominable spirit. Just being who you are. Love it! This movie shows the ugliness that comes from people desperate for sameness. THe desire to belong covering up who people really are.

I'd highly recommend this for anyone that gets a charge out of unique characters in movies.

Saturday, August 19, 2006

Bioset And Autism, ADD, ADHD, and Immune Deficiency

As I've always said, if Leo still had an IEP, there'd be 3 remaining goals:
1)Continue to monitor Leo's development. Keep current on therapy options and research. Something may come down the pike that applies to us, or will apply to us in the future.
2) Protect Leo's anonymity by keeping my advocacy private and separate from Leo's life.
3) Manage Leo's immune and GI systems to keep him at optimal health

So, this post is related to Goal #3
We went through the Bioset protocol. And what is it? My friends and I refer to it as "voo doo" therapy, because it certainly is on the opposite end of the spectrum away from western medicine. In a nutshell:
BioSet is a gentle, drug-free means of eliminating food intolerances and environmental sensitivities. BioSet promotes healthy immune function by reducing immune overload so common in ASD children.

And more:
BioSet is based on the principle of the engergetic body as taught in Chinese medicine and utilizes acupressure, muscle testing, as well as computer technology.

As we are taught in basic biochemistry, all substances, living and non living, emit energy. Atoms attract and repel one another, building molecules and complex structures, all the while creating energy frequencies that interact in positive and negative ways.

When frequencies are misaligned, a block or weakness occurs resulting in symptoms associated with allergic reactivity.

BioSet corrects the energy flow thereby releasing the blockage and resetting the immune system. This process is called “clearing.” Clearing for a specific sensitivity helps to normalize the immune response resulting in a marked decrease in symptoms.

The BioSet practitioner uses muscle testing or electrodermal screening to determine where in the body the allergy or reactivity is taking place.

By activating specific accupressure points along the spine, the BioSet practitioner is then able to “clear” for the blockage, and thereby, clear for the sensitivity.

Once “cleared” of a specific sensitivity using the BioSet method of allergy desensitization, the physical symptoms associated with the sensitivity in question also clear.

For example, if you are reactive to pollen and you “clear” for pollen, you will no longer experience the symptomology associated with your sensitivity (i.e. sneezing, runny nose, itchy eyes, etc).

BioSet’s success lies in the fact that BioSet heals the child from the inside out. Children who suffer from these and other issues are highly sensitive individuals with overly reactive immune systems.

Because they are so reactive, their immune systems become easily overloaded simply fighting off everyday foods which are misperceived as foreign antibodies.

The result is that these children have little immune support left to fend off real threats in the form of bacterial and viral infections. Likewise, because they are so reactive to so many foods, they neither digest , nor absorb their nutrients efficiently.

Thus, vital organ systems are effectively undernourished, including the brain which relies on a variety of proteins and fatty acids to produce the appropriate neurotransmitters essential in forging neuropathways.

After clearing for food intolerances as well as chemical and environmental sensitivities, most children experience marked improvement in both their physical symptomology, as well as their emotional well being.

Likewise, because ASD children are so sensitive, they often react to certain supplements in their program (i.e. they experience hyperactivity, aggression,or an increase in stimming). Often, this kind of reactivity can be reduced or eliminated by either clearing for the supplement in question, or by muscle testing products and dosage to determine the exact needs of the child.

Phew! I apologize for the long description. I couldn't find a way to edit this further.

So far so good with Leo. It'll be interesting to see how long he'll "hold" his clearings - we did wheat and dairy, corn, soy, chlorine, mosquitos, and various seasonal stuff. He had the best spring ever, and not one mosquito bite, while his sister and myself had tons per usual. We let him "cheat" a bit more, but our organic whole foods lifestyle remains. I'm just too chicken! Plus, we give him enzymes when he "cheats", and for maintenance. I'm not a big supplement chick - Leo has always been a good eater, so I give him the omegas and some Bs and call it a day.

So there ya go!

Friday, August 18, 2006

Who My First Friends Were

The concept of time broadens. Recently Leo asked me who his first friends were. He's asked me many times in the past, and each time there is a new layer of understanding, like the layers in an onion as they say. We started with the friends he knows in town, which is what I thought he was driving at. His oldest friend, Janie, he met when he was almost 2 (just right around when he was diagnosed). I finally explained that techincally, his first friends were from my Mommy and Me group in NYC when Leo was just an infant. Tiny infant friends. He said, “Wow, I’m sure you had to take a lot of classes on how to be a mommy. You had to learn so much since I was born first”.

I thought, what irony! The assumptions he made on his own about being a mother. If only we had all taken mommy classes before the hospital handed us our tiny newborns, and fend for ourselves. Leo assumed, that of course we all had to be trained in order to do what we do. After all, that's what HE does, right? Goes to school, learns stuff at home. Experiences life. He's fully aware of what he understands versus the breadth of understanding that us adults in theory have.

It also reminds me of what a blogger said once, that our children are at their most intuitive time of their lives as toddlers. They do not have enough life experience just yet to make assumptions and generalizations, and better yet make false assumptions. I had to break the news - all of us new parents pretty much wing it. Nothing prepares you for parenthood.

Alone In a Crowded Room: Refections from an Autism Mom...

The title to this blog is actually the title that my editor from Autism Asperger's Magazine wanted for my article about discrimination a few years ago. I thought it was a little too whiny, and instead went with "My Son Has Autism Too".

I wrote that article 3 years ago. Has my worthiness status changed in 3 years? No. What HAS changed is that I have more company. I meet more and more children that have no longer meet the diagnostic criteria for an ASD. They no longer need intensive intervention. They can be mainstreamed with little or no support. The word that has been used for this description is Recovery. Fighting words for many.

My desire is to understand those that have such a visceral reaction to other parts of the spectrum for the purpose of becoming an ABA therapist at some point (currently I'm a preschool teacher learning as much as I can about development).

I also want to broaden my perspective in order to help the many people that email me for guidance. Unintentionally, my site has become an insirational one, so I don't get my little niche of HF mainstreamed parents as I expected. I get the gamet, and they are welcome.

To learn more about other parts of the spectrum, I've discovered the wonderful world of blogging, and I've honed in on the sites I'm most attracted to. They are brilliant parents. Some are real writers, which makes sense as to why I like their blogs so much. They are wonderfully insightful and I've learned so much about THEIR parking spot on the spectrum. A few can be found on my list to the right.

There is some of what I've learned so far (and of course it' much more than this, but this list pertains to the topic at hand): Their children have a lot in common, like age and similar deficits. These parents are hopelessly positive, and rarely have bad parenting moments and bad days. I am in awe and feel pretty intimidated by this. Sheesh! They can't stand labels and categories.

I also see how they judge other "factions", and have little tolerance for fellow ASD parents on other parts of the spectrum. Not much discussion, if at all, about fighting with their school districts. I can only infer they are affluent enough, or have lucked out with their schools. Bonus, if it's true!

They also make lots of implications and inferences that are incorrect about fellow parents that have a different "parking spot". I can totally understand how this happens - and like many things in life, it's from not understanding where another person is coming from. From not being informed OR CURIOUS about where I reside in the world of Autism. I know I've had many incorrect assumptions, and I've learned so much from reading these blogs. I've very thankful to have found them.

Kristina Chew is the only exception - she is attempting to understand other parts of the spectrum, and differing viewpoints on therapies. I don't feel judged by her. I am grateful for that, and grateful for her writings.

They also show disdain for parents that reside near their parking spot, but have differing views (ex: Autism Everyday video - no empathy for the fact that these parents feel the way they do, only judgement). I could be incorrect about this, but man!

I've made a big effort to connect by sharing my thoughts and I'm immediately blasted. This is hurtful. I'd love to be a part of such a loving supportive group (with each other). They seem to share the same views on books and news stories as well. Very little, if at all, disagreement. Lucky people to have found each other!

Why do I bother? Many of my friends think I'm crazy for putting myself out there. Clearly my views are not shared, nor is anyone really interested in what I have to say.

Am I an Autism parent? Yes. How has my life changed in 3 years? I don't have an impossibly giant schedule to manage and implement. Other than that, my fears and thoughts remain pretty much the same.

Autism is a treatable disorder. Treating our children doesn't mean I don't accept who they are. True, many parents reject their own children. I'm happy that I don't have a full-time schedule to manage and implement. I'm happy my son no longer vomits in anticipation of getting a haircut. I'm happy that Leo can walk down a crowded hallway without panicking and hand flapping. I am envious of these blogging parents that support milestones and good days. These parents reject my most joyous moments of my child becoming happier and healthier. Only parents in similar parking spots can be happy for me. Why is that? I'm still searching for that answer.

We can make huge positive changes with biomedical treatments and therapy that make our children happier and healthier. Less autistic? Yes, the bad parts that many adult's with ASD would list as something they'd get rid of. Something else I've learned from reading the blogs of adults on the spectrum. These children are STILL different, STILL on the spectrum. A beautiful fact, diversity.

Thursday, August 03, 2006

ABA Experts and Criteria - a Poll

Hi there. Here's an update on my empty blog poll. I noticed that people have been searching for this very answer, according to my statistics. I had many answers emailed to me from this website and from a group I belong to. So...I added some answers on my Resource page (it's at the top, under ABA of course)Here's what I orignally said on this post:

I am in the process of putting together a list of criteria and a description of an "expert" in ABA for my website. I get many emails asking about criteria. Indeed, finding the right person is such an individual thing - a parent's prized therapist could be another's nightmare. That being said, I thought I may ask around and see what other's consider to be good criteria, good pointers, or good questions to ask before hiring an ABA team.

So that being said, how can we measure effectiveness? Or provide criteria that gives the best possible chance of describing an effective therapist, putting the odds in the parent's favor of wasting less time?

Shall we take some data, pun intended, for an ABA candidate?

Credentials. Experience. A person that "gets it". And any combination of the three? Food for thought....But seriously, ANY thoughts or experiences to share on this matter would be helpful to so many people.

Tuesday, August 01, 2006

Tae Kwon Do and Autism

I know, I know,we all know about sensory integration dysfunctions and the benefits of TKD - getting that corpus collosum to work better. Leo just passed his test for "high red". He's very proud of himself! Most impressive to me, is Leo's ability to perform the required "form" - a series of moves (I think at least 10?); lots of chops, and kicks from all sides of the body - front to back to side and so on. How can his brain memorize and then RECALL this sequence? I have no clue. It's just pretty amazing, especially in 90 degree "weather" in the studio. Mom can brag sometimes, can't she?

Temple Grandin and Corn

What? I know, any way to incorporate my all time fave obsession (autism, duh) with my summer environmental adventure book, The Ominvore's Dilemma. Sneaky me! So I have to say that our precious Temple was mentioned in the book. During a dicussion about beef production, Temple's contribution to their systems was discussed. Now here's the amazing part - no mention of Autism. Beautiful, as an individual, not a famous label.