Wednesday, July 30, 2008

Autism/AS Emotions Run High--What to Do?

On a different forum someone broached the subject about the myth that children with Autism or Asperger Syndrome are not emotional or prone to emotion, which is--of course--refuted by parents of children with the disorders. Giving an example is that a child with AS can become very overwhelmed when his schedule is disrupted or changed in anyway and will express himself by crying or becoming very frustrated. The question was asked: What to do to help a child deal with his/her emotions when life takes a disrupting turn?

My son, who is diagnosed with a mild form of autism, has had much of the same issues, especially a few years back. He would become so overwhelmed with a change in his schedule or the mere ‘not knowing’ what comes next in his day, would set him off to such a high level of anxiety that I just had to intervene with meds. I am not a parent who is prone to abandoning any other type of coping therapies (e.g., OT, breathing exercises, yoga) but his anxiety was so significant that we needed to turn to a clinical psychiatrist and psychologist for answers. He has been (and is still) taking Fluvoxamine (Luvox) for about 2 years now and it has worked tremendously. Again, I am not a parent who “pushes” meds on anyone and I am not stating that this is the only alternative, but for Nick it was the only alternative remaining and necessary to relieve his anxiety so that he could relax at school just enough to concentrate on his work without worrying so much about his schedule. Shortly after taking the meds he actually admitted to me that he felt better and his teachers had mentioned that he actually started participating in class.

Mind you, he is on a very low dose, only 50 mg taken every night, and we have kept it this way through two growth spurts and he (so far) does not seem to require more. Our strategy is that we will wait and see how things progress before increasing the dose—in essence, slowly weaning him off of the drug if he is not requiring it any longer.

Personally, I think his success has been due to a comfortable school classroom and setting coupled with the medication’s ability to take the "edge off" for a boy who is prone to a higher level of anxiety than, let’s say, the norm.

Has anyone found meds to be helpful or just plain necessary?

Monday, July 28, 2008

Autistic Boy's Take on Summer Vacation

A little summer vacation humor:

I noticed lately that I haven't seen my son with a toothbrush hanging out of his mouth in, what seemed to be, some time. So I posed the, what seemed to be, innocuous question, “Hey Nick been brushing your teeth every morning and night?" And he said, and I will quote:

“But it’s summer vacation!!!”

Good Grief!!!!!!!!!

Come to think of it, I think he said something to that affect on his Birthday too!

Movement to End "Savage Nation"


The lesbian basher and now autism slanderer conservative radio talk show host, Michael Savage--incidentally, the third most popular radio talk show host in America--has lost at least four major advertisers in one week’s time since his ignorant mouth flapped unrighteously attacking autistic children, angering those parents (and sickening others such as myself); some parents are boycotting his show and are trying to get him fired and off the air for good.

So far there has not been word of him being fired but at least four major advertisers are pulling their advertising from his nationally syndicated radio show and others’ whose contracts have ended are not going to re-sign; one of the biggest advertisers is Aflac insurance company, which spent $90 million in advertising last year; and a network of seven stations in Mississippi has announced they will no longer carry the Savage Nation radio program following his derogatory remarks about autistic children, as reported by the New York Times and ABC News.

Hateful remarks are not new for Savage, however, he has on separate occasions attacked the Islam religion and lesbians with his personal conservative views and hate-filled words which also incited advertisers to pull out from advertising on his show last year.

What is to happen to Mr. Savage and his show, I don’t know but I found this Care2 petition site to pull Savage off the air--check it out here.

Friday, July 25, 2008

First Week at Residential School--The Verdict

“It was the best of times, it was the worst of times...” -- Charles Dickens

Reports are in: Meghan is doing great!! I ‘ve heard from her teacher everyday this week, and Yes, I’d even called the house every single night to see how she was. They did say that she tried a few of her tricks from her “infamous’ bag of tricks—tricks used to manipulate or con any grown adult to complete frenzy in order to get her way! But, as trained professionals that they are, they didn’t fall for such arresting little tricks but instead showed her “the ways of her new world” through a picture schedule and reward system for doing a great job in the end. It started working, but latest report just proved my theory that she will not back down from her “try, try, and try again” philosophy that she had practically invented if not perfected. If you ask me, I think that this clever girl is lying awake at night plotting her next scheme to trick, manipulate and then overtake the house on Francine Rd.—ever read Dickens’s A Tale of Two Cities (a favorite book of mine by the way), I fear that the Rein of Terror has only just begun for the folks at Francine Rd!!…(Oh, just kidding!!)

Madame DeFarge, here she comes…(Just kidding again, really!!)

“It is a far, far better thing that I do, than I have ever done; it is a far, far better rest that I go to, than I have ever known.” -Charles Dickens, Tale of two Cities

Wednesday, July 23, 2008

Day/Night #1 at Residential School

I am quietly awaiting the "very first" of daily phone calls to be expected from my daughter’s new school to get an update on how her first night went--that is, sleeping somewhere that is not home--or home to her. I still have not yet heard from them at 11:00 am this morning and am quietly chanting to myself as I read my e-mails, the news and random blogs that I like to occasionally check in on: “ I’m not gonna call, I’m not gonna call…”

As some of you know, Meghan is in a new residential school and one that we had chosen wisely for her and had been on a waiting list for just about a year. If someone is going to send their child to a residential school, then I believe in choosing wisely for the absolute right school. And how does one go about choosing the right school? Through countless research, visits, interviews and a really, really good, old-fashioned gut instinct and sense that this is, in fact, the right school for your child; hence, we had no reservations about the school that we chose for Meghan, located in Southborough, MA.

We took her to attend her very first class yesterday morning and she went along happily and excitedly--as she had done once before during a separate visit.

We, however, were taken to another (conference) room and held hostage to--yet again--two or three more pieces of paperwork to sign, sign, and sign away; more interviews with the nurse to ABSOLUTELY make sure that her health record had not changed in a whole week worth of time; sat down with-- yet another--person from “fund raising” to see how and what “we” could do to help raise money (donate)—as parents who “will of course” participate in their child’s school programs. Then the morning was "topped off" with a special luncheon with her teachers and residential support staff (other teachers) as if one could really eat at a time like this. Then we visited Meghan in her class—a solitary room (that is without other students and with all three of her teachers) in which NOT to say goodbye to Meghan, but instead “we will see you soon, honey—we love you!” and pray like hell that she doesn’t try to run after us or grab a pant leg and scream her bloody head off…And with barely any control over my own emotions, I would have just started balling my eyes out. I think then all bets would have to be off!

Oh Geez!!

But NO, that dreadful imaginary scene did not, in fact, happen; as truth should be told, Meghan continued to have fun and enjoyed not une, nor deux, but trios of her teacher’s playing and attending to her as she sat soaking-in-all-that-lovely attention--hey, who's mom and dad anyway! as we watched through a one way mirror.

Thank God!!

I called at 7:00 that evening to say hi to Meghan and to hear from the teacher about the rest of her day and evening. Mind you, she has never been without her parents in all of her 13 years.

"She's doing great” was the report, in fact, she had just showered, changed and was ready to brush her teeth, and I thought: Ha, brush her teeth and it’s only 7:00 pm, Wow, after 4 hours of residential living and intense behavioral therapy, she’s already a changed girl!! Or scared stiff? Or simply cooperating for “time off for good behavior? (Stop it!!)

Who knows, but time will tell. And we will take one day at a time... We will visit her on Saturday with her brother, Nick, who will get a chance to see the house for the first time, and her new room at school, and we will all get to meet her roommates… and I will not call but instead (patiently) wait for the teacher's daily phone call for an update.

“I will not call, I will not call, I will not call, I will not…”

Monday, July 21, 2008

Dear Massachusetts Autism Advocates

I received this email today and wanted to pass it on to those who live in Massachusetts:

Dear Massachusetts Autism Advocate:

With the stamp of his veto this past week, Governor Deval Patrick has once again told low-income children with Autism Spectrum Disorders that they would not be able to receive the intensive home-based services (including ABA and Floor Time) provided under the Autism Waiver program. Governor Patrick cut $1 million in funding from this critical program, even though our children are already underserved by this program! During the initial eleven day enrollment period in November 2007 the families of more than 1,100 Massachusetts children with ASD applied for just 80 slots available under the Waiver. Hundreds of low-income children continue to languish on the waiting list!

It is time speak on behalf of low-income children with ASD living in Massachusetts!
Our state legislature recognized the critical need for funding of this program and budgeted $4 million for Fiscal Year 2009. This would double the number of available slots in the program to 160!!

Governor Patrick needs to be aware that this already underserved population simply cannot afford to be shortchanged again. Every child with autism deserves the opportunity to have appropriate intensive intervention. Their future quality of life depends on it.
How Can YOU Help?

1. Immediately CALL YOUR STATE REPRESENTATIVE AND STATE SENATOR at 617-722-2000 and urge them to support an override of Governor Patrick’s veto of $1 million in funding for the Children’s Autism Medicaid Waiver (Line Item 5920-3010). If you are not sure who your representative and senator are you can find out at
2. CALL Speaker of the House Salvatore DiMasi at 617-722-2500 and Senate President Therese Murray at 617-722- 1500 and ask them to support an override of Governor Patrick’s veto of $1 million in funding for the Children’s Autism Medicaid Waiver (Line Item 5920-3010).
3. Forward this email to everyone you know and ask them to MAKE THE CALL too!!
The override CAN BE ACCOMPLISHED, but we all have to get on the phones to our legislators immediately. Today is the day that you can truly make a difference for a child with ASD.

Thank You,
Judith UrsittiMassachusetts Chapter Advocacy ChairAutism Speaks

"Talk Radio Host" on Autism

Yes, I’ve heard Michael Savage’s latest opinion of autism. (Michael Savage is a conservative radio talk show host.) I had originally chosen not to participate or to draw attention to his ridiculous banter (crap) but someone asked me if I had seen it. In case you haven't heard: he believes that the diagnosis of autism is “a fraud” and a "phony disease" and it’s just another way for people to collect disability from the government. And that kids who are diagnosed with autism are not autistic but lacking parental discipline and are “S.T.U.P.I.D.”

Gee, I didn’t know Michael Savage was a Pediatric Neurologist too?

But in case you haven’t heard—hear you go. Feel free to offer your opinion—Hey, I guess everyone is entitled to their opinion!

Here is another link to a separate broadcast and more of his views on autism--if you are not sick already!!

Saturday, July 19, 2008

Supervising Autistic Children vs. Typical Children

I was at our local pond recently with my son, Nick, and noticed that a small group of boys were, apparently, swimming by themselves--that stating--NO parental supervision. What caught my eye, and the eyes of other parents--I am certain, was that they were swimming WAY too far out--like to the middle of the pond. I live in a development which has a private beach/pond for its residents--and NO lifeguard.

I was thinking how incredible that was. Not only would I not allow my 14 year old to swim without a caring adult watching out, but I barely allow him to swim out over his head--and he can swim. And these boys, who were no older than 14, were swimming on their own and without a supervising adult. Sitting there on the sand with my book and drink, I worried for these boys. Granted, some were safely floating on boogie boards, but a couple others were floating on nothing more than luck and ingenuity.

Statistics show, here, that drowning remains the second leading cause of injury-related death among children ages 1 to 14; and that 88% of those drownings were those under some form of supervision.

Do some parent just think that other parents are watching out for their children? And as I was sitting there on the beach watching them I was thinking: "Could I swim out to rescue one of them by myself if I had to?" Probably not! I'm not that strong of a swimmer, and to haul a 13 year old back to safety? Good Luck! Hmm?

And as I was driving home I noticed other kids riding their bikes (in the middle of the road by the way—even though we have adequate sidewalks) but they looked about 6. Now let me tell you, as a mom of autistic kids, I could and would never allow my kids to swim on their own nor ride bikes on their own, especially at the age of 6.

Is this the difference between having children with special needs or am I totally out of the loop?

Tuesday, July 15, 2008

Autism Therapies--successes and questions

I wanted to review the different types of therapies for treating/educating/helping children who have autism:

Applied Behavioral Analysis (ABA)
Rapid Prompting Method
Sensory Integration

Gluten Free/Casein Free Diet
Speech/Language Therapy
PECS/Electronic Voice Output Devices
Any others?

Another reader had mentioned that he uses Chelation Therapy—removal of toxic metals from the body (such as lead and mercury) for his child and has reported some success.

For my daughter we have used ABA, Floortime, Sensory Integration and tried the Gluten/Casein Free Diet. ABA was (and is) used throughout Meghan's education and has shown to be the best method in teaching her; after only 6 months of using ABA, she showed significant improvement--from 3 - 3.5 years old.

Speech Therapy was, of course, the staple therapy throughout her education and therapy programs, both at her school and throughout the day and also at a therapy rehab center. We have used both communication books and hand-held computer devices. Both work pretty well, however, the book was by far more reliable and readily available. All of the computer devices that we've used broke down at some point in time and needed to be sent back for repairs. (Note: our local school system paid for these (costly) devices and necessary repairs and was stipulated in her IEP.)

Sensory Integration helps her to better focus on her work and alleviate anxiety while she is at school. I also had her see an OT therapist at a local rehabilitation center who helped us understand and learn the "how tos" in maintaining a sensory diet at home. Incidentally, therapy at the rehabilitation center was paid for through a supplemental insurance--which we had to pay for in a monthly fee but greatly reduced the costs of expensive therapy.

We did not see much improvement while she was on the diet, perhaps slightly less hyperactivity and aggression, but nothing significant--as also revealed in other studies and reports. This is also a difficult diet to maintain, you really have to spend time in your local health food store reading labels--and the additional cost of the food does add to your weekly food bill--but if it works for your child, then it's worth it! You should also do your research and discussed this diet with your child's pediatrician to maintain optimal health.

And as always, before you decide on a therapy for your child, do your own research and discuss them with your child's doctors.

Any thoughts or comments on these therapies? Any success stories of your own?

Sunday, July 13, 2008

The Naked Girl

Once upon a time I created a small (tiny) lotions business that I named The Naked Girl. The double meanings here were that the lotions were all-natural, aromatherapy infused moisturizers and hand lotions and that my autistic daughter liked to be naked—and who inspired the name. It took me years—literally—to make her wear clothes and to keep them on. We could be anywhere, mostly home, and she would just decided to disrobe. And she was quick too, someone once likened her to Houdini. Kind of cute when she was 2-3-4 and 5, but at 13 and now a fully developed woman—NO WAY! Not cute, only disturbing!

I think by now you probably know where I’m taking this horror story. I forewarn you, the following does contain nudity:

Yesterday we were at a casual restaurant located on the beach in my hometown. Yes, very casual, casual enough to grab dinner with nothing more than your bathing suit and a pair of flip-flops. But shirt is required and absolutely no "exposing of the breasts" (not actually a sign stating this fact, but goes without saying, eh?) Meghan was sitting and waiting for her dinner to arrive and gave her father the sign for the bathroom, but I had stepped away for a moment and he told her to wait. I guess she didn’t want to wait, Daddy, because she pulled down her one-piece bathing suit to full breast exposure! And not once but twice—to make matters worse. Her father had to use all his might to pull it all back up. “OMG!” Well that was the kind of hullabaloo that could be heard throughout the, by then, big crowd of people simply waiting for their fish and chips, and beer and wine—and no nude shows, please! Except for the Chinese family sitting in the corner, they thought it was the funniest thing they’d ever seen, especially little old grandma—at least we made somebody’s day?

Needless to say, while the little old lady was "forcing out" a lot of hot air, I was "sucking in" a lot of cold wine!! And let it be said that we were probably the conversation starter at a few too many breakfast tables this morning.

Oh, what an addition to the family memoirs!!

Can anyone relate?

Saturday, July 12, 2008

Cat Fight Among the Stars

Heard the latest squabble between two well know stars: Amanda Peet and Jenny McCarthy?

I am sure that this subject is something that has been discussed, rediscussed and discussed again quite a bit through every autism forum known to man; its controversy and differences of opinion—and there are two sides of the story, and not just--demonstrably--the parents of autistic children and the pharmaceutical companies, but parent to parent as well. I wanted to reevaluate the subject of thimerosol (and why the squabble) here. (Yikes!)

What I had understood was that the mercury-based preservative (thimerosol) has always been contained in vaccines, including the MMR, and that only during a small stretch in 1990s did someone decide to “gamble” and double-up on the amount of thimerosol used in vaccines (through multi dose and the inclusion of additional vaccines) to see "what would happen” and to save a nickel. This is and has been my understanding of the issue.

Since that time, vaccines have been--and are--provided to children with OR without the nasty thimerosol--or a great reduction in the amount of thimerosol. (Thank God because why should anyone “shoot up” our babies with mercury—it’s like saying “here baby suck on this old rattle coated with lead paint.”) Even in recent years my son had to have the flu shot (gulp) because he has asthma but dontcha know I chose the flu shot without the thimerosol added, “costs more,” the nurse added---odd comment to a woman who has two autistic children--dontcha say!?

My thoughts are, now tell me if I’m off base, that since (most) vaccines can be given without thimerosol (or a safe reduction) and without the “only ” known threat? Then why not keep your children healthy with THAT option? Jury is still out for me, not sure if thimerosol is the only connection to autism, but it certainly and most likely, has not helped.

And calling people "parasites" (as Amanda Peet did) simply because they are scared to vaccinate; incidentally, Jenny McCarthy has a son with autism and Amanda Peet has a nice new "healthy" baby.

Can't blame people who have autistic children for being scared and angry, now can we Peet??

Love to hear what you think?

Here is the Peet vs. McCarthy story

Friday, July 11, 2008

Breakthrough or Known Fact

Autism breakthrough? Hmm. Can someone please explain to me why this is a breakthrough? It was reported this morning on ABC News that researchers have found a gene that simply sits idle and just needs to be "turned on."

Have we not always known—at least for the last twenty years or so--that intense therapies early in the child’s development can greatly improve the child’s chances of either “recovering” from autism or simply “improving” their skills given the child’s severity. I think we have always referred to this as making connections or reconnecting or rewiring the brain.

I know that it is pointed out in this ABC News article that some children with mild autism can improve…due to what we already know? So please, please tell me why I will be educating people, family members, concerned friends, that this in not a medical "breakthrough" for a cure—and that, in fact, I’ve been engaging in this “breakthrough” for the last 13 years.

My daughter has had the benefits of every therapy known to man (or men/woman understanding autism) and has improved through the years in being able to engage in some activities but her behaviors are still so extreme; hence, we need to send her to a residential school now that she is 13. So what is this study saying, that if my daughter has supposedly recovered from autism--since we have (and are still) worked for the last 13 years in “turning on” those sleeping genes that she would otherwise be destined for a life in military school or worse, jail??

Not a breakthrough, just a confirmation of what we already know.

I’m not trying to cause trouble; I’m just a blogger looking for REAL answers.

Watch the breakthrough in autism research video if you haven't already:

Wednesday, July 9, 2008

How I Knew Residential Is Right

Meghan will be starting her new (residential) school during the week of the 22 of July. We had a meeting this past Monday to sign paperwork, meet with staff and classroom teachers and was given a thick “manual” (binder really) of all about the school and its programs, procedures, list of teachers, list of medical staff, their email, their picture, and all other contact information that you can imagine. I left with a big smile and a huge heart…this is not exactly the "emotion" that I thought I would have walking away.

This is how I knew that--not only--was I doing the right thing for Meghan--let’s face it, she will be entering the best school of her life--with programs galore--and their brand new 5 million dollar Olympic-size indoor swimming pool doesn’t hurt either; but we are doing the right thing, and the right school, for all of us.

The other big deal here is that I will be able to focus a lot more time to my son, Nick, who has a milder form of autism and who is also a pure delight. And how does he feel about his younger sister “moving” into a new school? He too has been well prepared. We have all known that Meghan would enter a residential school since last August, so he has had a chance—as have the rest of us—to digest the up coming change. Together, he and I also see a therapist (who specializing in autism spectrum disorders) once a month to help him with problems and issues (such as this one)—and me too!! She’s great and I’m so glad we have her; she really does help me understand and validate life with autistic children. And Nick fully understands and comprehends why Meghan needs to go away to this special school. I feel like we are living in a sort of "void" of not really knowing how we will react and how life will be when Meghan leaves…I get the feeling that we are all in our own little world of wondering and, at least for me, a silent mourning--it has been a long journey.

Monday, July 7, 2008

The Three Rippers

Well there was Jack the Ripper (who we didn’t like), Rip Van Winkle (who we pitied), and now we’ve got Meghan who Rips (who I would like to kill-- kidding of course).

Let me tell you a little bit more about Meghan who Rips, because I don’t think you know that one! Well she’s my daughter who, as you might already know, is autistic, and has developed a new form of expression: ripping her clothes! Does she think that I’m bloody rich or something? She must really think that my ½ carrot diamond studs (square cut and super shiny) are real! I think so; because when you start relating personally with the sales staff at your daughter’s favorite clothing shop, or when someone asks you “don’t you work here?” You know you’ve got a problem—and, sadly, I’m not talking about shopaholicism, because there’s a very good remedy for that—call a shrink or divorce attorney!

The problem is that when she is done with a shirt, pants, underwear, and socks—usually (now here is where you’ll want to bite down on something really hard) just after wearing the item only ONCE, then she will rip them "unwearable "and send them to fashion heaven! That’s one time the shirt, one time the (30.00) pants, one time…well you’ve got the idea! Oh, the pain!

And, yes, this behavior is due to her OCD and sensitivity to some of her clothing, and NOT because she thinks that we are "super rich" and--God forbid--to wear an outfit more than once! But besides for body brushing (which doesn't seem to really work for her anymore) I'm not sure what else to do besides keep buying clothes and pray that she likes wearing them.

The solution? And can you actually divorce your daughter? Or maybe I’ll just trade her in for Jack the Ripper—and just take my chances with him!!

Sunday, July 6, 2008

Autism--Ugly Past/Better Future

What I find interesting is the dichotomy of the phrase “until it happens to you.” Well I know a good one—actually two. One happened five years ago when Meghan was seven and my kids and I had just come home from being out all day. We had just recently moved into our house and only had ¼ of our fence installed—installing a fence to keep Meghan safe because she was prone to running off. So, as I was saying, we came back home and after I unloaded the kids from the car, Meghan ran up and behind the side of fence that was put up and I, temporarily, lost sight of her. I ran up and around the fence, but she was gone. I searched the area that I thought she might have run off to, but did not find her. So I didn’t hesitate to call the police. Now, you really don’t want to know how this conversation went, but here it is in black and white:

Police: "P... Police "
Me: "My daughter is missing and she is autistic. "
Police: "What, missing, how long? "
Me: "Just a few minutes but I can’t find her and she is AUTISTIC. "
Police: "Artistic? Well I’m sure she’ll come back soon. "
Police: "Okay, but it could take a while…. "

(What do you think he thought I was telling him: that my highly-creative-and-talented-daughter... ran off?)

The police came, two of them, or maybe three, with all their pretty lights flashing—like a show, or a “testosterone play”—some, twenty minutes later…Holy Hell! And all of my neighbors, who I didn’t even know yet, came streaming out of the woodwork—probably, to enjoy the show.

To make a long story short, Meghan was found soon after by one of the police officers; she was found walking naked down the street after taking a dip in one of the nearby ponds.

The real kicker here is that one of the officers had told me that they would have been there a lot sooner if they had "known" she was “ARTISTIC.” Nice!! But this group of police also thought that I didn’t do a good job “taking care” of Meghan either, as if I were inside taking a nap while my two autistic children were outside playing in the street or something! Yeah, right! If that were the case, I would have lost Meghan YEARS ago. I wanted to scream!!

A couple of years later, in a community close to where I live, a police officer’s son, who was also autistic, had gone missing one day and not only, I’m assuming, did “all the troops” come marching out… but this officer enacted a counsel to “educate” the local police on how to react to children who are autistic and go missing. It was reported that autistic children are likely to “bolt” away from their caregiver at any given time and are not likely to find their way home or even be able to tell another adult that he/she is missing and, of course--time is of the essence!!

You don’t say?

Is it true to say that nothing is truly ever understood or questioned until it happens to them? Just like in the “cold mother” theory; a highly regarded psychologist named Bruno Bettelheim had “research” and declared that autism was a direct result of a “refrigerator mother” or “cold mother” who was suppressing her “indifference” for her own child and, in essence, causing the child to be traumatized and escape into his/her own world—known as autism. Can you imagine?

It finally took another psychologist—who had an autistic child—to openly acknowledge that the "cold mother" theory couldn’t possibly be true and that Bruno Bettelheim was a fraud and hadn’t even studied or worked with one autistic person, as they finally learned and exposed him!

By the way, good for the police officer who worked to train other police officers about autism. I didn’t want that to go unrecognized or unappreciated.

Friday, July 4, 2008

Attacked In My Sleep

Early this morning (and I’m talking early), about 1:00 am or so, my daughter came into my room and attacked me in my sleep--YES, that’s right! This is not too unusual! I know, you’re probably thinking--OMG, right? What I mean is that it’s not too unusual for Meghan to get SO frustrated that she comes after ME--and only me (thanks goodness not her brother) and pulls my hair, pinches, bites, and bruises the living heck out of me. It’s never pleasant, certainly, but 1:00 in the morning while I’m sleeping--nice and cozy in my bed--how traumatic, would you say!? Fending her off can be, at least, a few minutes or until she realizes that I’ve had enough and takes a break. This is my opportunity to run like hell or try to calm her out of the situation/conflict.

Why does she do this, you ask? Well mostly because she has Obsessive Compulsive Disorder (OCD)—not uncommon for people with autism—and she tends to get SO focused on something, usually something very little, like how her underwear “feels” on her body, or how her clothes “feel” when she puts them on. I know this might sound strange to those who don’t understand extreme OCD, but it’s what we live with for the moment.

This is one of the biggest reasons why she is going to a residential school--in two weeks. We have been on a “kind of “ waiting list for the school of our choice--and she got in! Yahoo! Here, they will work with her OCD—try medications (possibly) and be able to administer and monitor her on what works best for treating her OCD. Our neurologist once told us that treating OCD with medications for children with autism has about a 30% success rate; we will see! The other reasons for her needing to go to a residential school is so that she can have teacher STAFF around her at all times; they will maintain an extremely structured schedule and environment for her (obviously, much more than we can do at home) and involve her in learning a vocation, so that she can work with a job coach in the future. Her future looks brighter! But beating her mom has got to stop, yeah?

By the way, she wanted fresh underwear—fresh from the dryer—the other 100 pair in her basket were not good enough for her and she wanted the ones in the dryer. And 1:00am is the time that she decided she wanted to change her underwear. Could she not have just nudged me?

Now off to the donut shop to buy a dozen to stuff my feelings!! Hey, I could be a drinker!

Thursday, July 3, 2008

Abilitations Creations for Sensory, Communication, and Learning Tools

For those of you interested in therapy equipment and other products for a complete sensory diet and communication aiding tools and devices, Abilitations has just about everything that you can imagine. I’ve used the different products and found them essential for my daughter’s sensory diet. I still get their brochure in the mail on an ongoing basis. has just about everything that you could ever need or imagine for a person with all types of special needs--a lot of these products and equipment you will find in your child's classroom and therapy rooms (at least I hope). However, the products tend to be very expensive, so see if your insurance can off-set some of the expense. If not,

in Massachusetts there is the Arc of Massachusetts and DMR (Department of Mental Retardation) and see if you can get special funding for your child with special needs.

I hate that name by the way--The Department of Mental Retardation--we need to work on getting a better name for this department, it's cold and derogatory, do you agree??)

And if you live on the south shore of Massachusetts, there is a special fund called the Phillips Fund that will actually pay for these kinds of things, including special therapies and equipment. A fantastic help and a wonderful program!! Ask the local Arc, or comment or email me and I can tell you more.

Wednesday, July 2, 2008

Going to the Doctor...Conclusion

By the way, Meghan did great with the doctor yesterday--I worried. There were three of us to help her through it (okay, to hold her down!) but she was great. She didn't like the alcohol swab to clean the area before the shot and got upset, but the shot--piece of cake (go figure!). She chose to watch the shot stab her in the arm and didn't flinch, snicker, or yelp--but I think I could have been heard to let out a hysterical laugh. Anyway, we then took her to the beach and then an ice cream reward--apparently, more for Mommy than Meghan!!

Reversing Mental Retardation

I read about this in the Fragile X story some time ago and again, recently for TSC.
Reversing mental retardation for those with Fragile X Syndrome:

Those suffering from a genetic disease called Tuberous Sclerosis Complex (TSC). *Since 50 percent of TSC patients also suffer from autism, the findings offer new hope for addressing learning disorders due to autism, according to researchers:

Tuesday, July 1, 2008

"Eccentricity" Poem

Many years ago I started writing poetry (when writing fiction wasn’t going so well—still working on that one book by the way). It was an idea of one of my old college professors, he said that when he had writer's block he would switch to writing poetry—he eventually publishing several books of poetry…and not one novel—interesting. Anyway, I tried it and loved it. When people call it “the healing power of poetry” it is such a true title and statement! Try it! I wanted to share this poem with you, it was a favorite when I was writing my poetry and hosted some poetry readings. Enjoy!


Autism is beautiful too.
I see it every day.
I can feel it too.
Running down to the ocean almost naked
But wouldn’t totally naked be so perfect
Feeling the sand, the breeze,
Enjoying this free world.
How wonderful it is to witness such beauty.
A child enjoying this beautiful work of nature—
With such delight.
Running to the water,
Chasing the luscious waves
And cool sprays,
Loving every breaking crest;
Then splash over and over and over again.
Tireless, she could do this all day—
And I could watch her all day,
But I must tire and keep abreast
As to not have her—drift away.
Her face beaming.
Her voice squeaking.
Her joy breaking straight through me
Like each home-bound wave
Breaking on its welcoming shores.

Autism is beautiful too,
Complexities and all.
Her brain the “jigsaw puzzle”
With some of its pieces in disarray,
Her job it to find the way
To put them in their rightful place
And what is left over, is simply left over
And that we will just have to name: Eccentricity.
But, even so, she will connect to say
That I am indeed autistic, but I will be okay
For I am learning to connect and become just like you,
Not because I want to, or
Because I believe that you are more “normal” than I,
But because I have to:
Majority speaks and speaks loudly
And tells me that I must conform
And be just like you and get along;
But a small part of me will always go on enjoying
My wonderful, free moments
At the beach—
Eccentricities and all…

Autism--Two Sides to Every Story

I certainly know first hand that autism is one of those disorders that can be very difficult for parents to deal with—emotionally (a sense of loss for the parents) and physically (a lot of work keeping the child engaged in appropriate activities and keeping him/her physically safe). All of these issues are topics that you and I can talk about and help each other with on a daily basis.

But things I often wonder are my daughter’s thoughts and dreams (she’s non-verbal) and even though she has picture communication and a hand held communication device, she still can’t truly articulate her thoughts and feelings—at least yet. Even though she does lash out physically (on occasion) who can really blame her? I can't imagine having her disorder for one minute. How frustrating and tough it must be not to be able to share her thoughts--her anger--and ask a billion questions (as children her age do); to simply be able to communicate like everyone else. I can’t wait for her to be able to write or type what she thinks and feels and be able to communicate with me--her mom, every day. It’s easy to get so wrapped up in my own life and my own frustrations and sense of loss, but I can’t imagine how she must feel everyday. I really do admire her courage and strength--I don't tell her this everyday, but I should!