The R-Word is Not A Word in My Dictionary

Oh, I was snooping around other blogs and noticed there was some debate about the mentioning of the word: Retarded. (Boy, I even have trouble writing the word and I’m not using it in a derogatory way.)

The comments came from Maureen McCormick’s blog (aka Marsha Brady) and stated that she will not be seeing the new Ben Stiller movie, Tropic Thunder, because the word retarded was used. She has a brother with Down Syndrome. Incidentally, Stiller is defending the movie saying that no harm was meant.

I soundly agree with McCormick and the other boycott activists. I think that this is just another word that should be omitted from the English language due to its more derogatory significance. Please use intellectual disability or handicapped (if you must) because the R-word just leaves a bad taste in the mouth for anyone with an intellectually challenged loved one: please remember this!

We all hear it from time to time and for me it resonates a heartfelt pang and tremendous grief and I always think of my wonderful son who is full of life, humor and charm—with that big, bright smile and happy twinkle in his eye—and who also has a mild intellectual disability, but I would never think of him any other way but the cute, smart, charming, happy boy that he is. I remember the day we found out that he was intellectually disabled—and during the car ride home I was crying (not for me, but for him) and upon telling my mother the news and telling her that I didn’t want him to be alone…I guess that’s what I thought this all meant…and feared—a life isolated, adrift from the mainstream. But she told me that he’s still the same boy that he was that morning—the very same bright-eyed, toe-headed child that I loved with all my heart was neither lost nor alone! But to think that he is the R-word or be defined that way—derogatory or not—and that one would ever use it in his presence—well that’s just incomprehensible. He is so much more than this word would ever give him credit for. Hear that Ben Stiller… huh?

Some of the comments from the blog had agreed that the R-word is unacceptable, but some others had disagreed. (Ooh, Geeeez!) The ones who disagreed were saying that she (or we) had to ”toughen up” or “grow thicker skin” because it’s just for fun and no harm is meant. Hey, wouldn’t mind getting into a fistfight/cat fight with those people. But, I know, fighting is never the answer. So, instead, I would like to tell “the disagreed” that I guess they’d just have to have a loved-one with special needs (or be special needs themselves) to appreciate the emotional impact that this word resonates—and the derogatory manner in which it is usually used—to truly comprehend its enormity. To sum it up, I guess I’m saying that I’m not really sure why it’s so hard for the “disagreed” to get or “understand” that this could be upsetting for some (of us) who are emotionally involved. Hmmm…so I have to wonder…?

Maybe during one of her first debates, V.P. nominee Sarah Palin could weigh-in her opinion on the subject given the fact that her youngest child (4 months old) was born with Down Syndrome. Perhaps if not during the upcoming debates, then in the upcoming years as either the first Vice President Elect Mom or simply (and equally important) Sarah Palin, Loving Mom. I wonder how she’d vote and what she’d say?

The Power of Denial

I had a friend who also had a child with special needs. He has mental retardation and I also think autism, but that would be my interpretation. This friend did have her son evaluated by a neurological psychologist but she never shared the outcome.

Instead, she chose to “defend” her son by stating that the doctors were wrong and that there was nothing wrong with him; essentially, choosing the path of denial.

The problem was that she was wasting valuable time by not helping her son with therapies that could effectively work toward helping him actually overcome his disorder, or the mere presence of it.

I found this issue very hard to be her friend: She was always looking at my kids as if they were the ones with the problems and that her son was coming along (more than mine were, which was not true) and that her son would be fine. She would also be very hard on any friend that mentioned that something might be wrong with her son—which was evident; to the point that she would even end that friendship.

She was lying, denying, and putting her friendships at great risk. Her husband, on the other hand, was the levelheaded one and who not only believed that he and his wife needed to be proactive and help their son with necessary therapies and the like…but also wanted to be open with his friends about the truth--which is so important and a healthy thing to do. I felt sorry for him but at the same time I respected him for acknowledging his son’s issues and also wanting to help his wife deal with her suffering. Boy, did he have a full plate!

One of the saddest problems with her denying the truth about her son was that when we were all together, usually at her house, she would be very hard on her son—as if to say, you have to be more than you are…you’re not good enough; and all for appearances.

This is not putting your child’s best interest at work; it’s ruining his chances of a happier life, for him and for the entire family.

As a matter of fact, she was working against the one thing that she wanted most: a recovered child.

Can anyone relate to this common issue of denial, and want to share their thoughts?

More on Denial Here.

Thank You!

I just wanted to say Thank You to all of you who have e-mailed me such wonderful e-mails of support and encouragement. I think all parents of any child with special needs—whether they are a child with autism or any other disorder—because we are all together—are truly admirable, courageous—Fearless! And our children are pretty courageous themselves!!

I enjoy hearing your own stories because it tell me that I’m not alone—there are many of you out there who can relate to my life and my stories and have your own to share.

Feel free to leave your comments for others to read (in the comment part of any post) that way others, who are just like you and me, can be a part of the story, the rewards, and the encouragement. And let me know if you want your own story posted as a “Guest Post” with your name attached or anonymous—I’ll be happy to post your Fearless Comments.

A few of you have asked me to post more about Meghan’s residential school, and I will on upcoming posts as I, too, learn more… Let me know if you want me to post about a certain topic or issue—I’ll be happy to.

Thanks again!

(FF) Holly

Why I Had To Send My Autistic Child Away, and How I Did It:

For all of those readers who are wondering why I had to send my 13-year-old daughter to a residential school, well the reason surfaced one year ago this month. She came after me and attacked me. She was so enraged about her bed sheet not fitting on her bed properly that she almost broke down the door to come after me—and on more than one occasion that particular morning. Thank God my husband was in the house, because even he had trouble controlling her and he is over 6 feet tall.

This type of rage and attacking me didn’t stop that day, it continued at least once a week. One afternoon I was cooking dinner and she came running down the hall in a fit of rage, but I didn’t know it until she had me cornered in the kitchen and all I could do was turn off the burner to the stove so that she wouldn’t burn herself while she was attacking me. She grabbed me by the head and grabbed a fist-full of my hair and pulled as hard as she could, then she grabbed hold of my cheeks and my neck and pinched my skin as hard as she could, and I could see the rage in her eyes… this was not the child that I knew and loved, this was a monster wanting to hurt me…to hurt someone. The ending: Well it was the usual finale to her attacks, she grabbed hold of one of my hands and bit the surface of my hand so hard that it blew up like a balloon.

Of course I was stunned and horrified and I cried, and I cried, and after that day, I could not be alone with her—and I knew it.

Furthermore, I wanted a more fulfilling life for Meghan. I knew that I couldn't travel in the car with her anymore because I would be attacked there, too, and her brother, Nick, too, for that matter. It only took the wrong music on the radio, or Nick’s voice asking me a question to set her off. And while I was driving, too—Yikes! Talk about crazy! Risky! Where the hell is DSS when you want them!

I wanted her to enjoy more out of life, as we all do for our children. And I knew that a residential school was the only option for her to have a more fulfilling life. And let’s face it, she had me over a barrel and she knew it. She was eating anything she wanted, doing anything she wanted, and she was dragging me around the house like a rag doll because I was too afraid to be her mother.

I must mention, too, that I did have in-home help, especially during the year we spent on the waiting list for her school. I had that extra support person for a few hours a day, but it wasn’t enough to truly help Meghan and to maintain a consistency that she needed. And besides, the turnover rate for in-home help was two people a year—at least, and not necessarily the most qualified people.

Step Two: I knew that my husband was NOT on-board.

It took work on my part to help him understand what life was really like for me at home with her and the risk of being attacked. He knew I was getting attached, now more than ever. And he knows that I'm petite (5’2, 110 lbs) and Meghan was (5’5, 160lbs at the age of 12)—I had to put my foot down and tell him that I couldn’t live like this anymore—and wouldn’t. I explained that Meghan deserved a happier and more fulfilling life, and that she couldn’t possibly get it from me…from us, or from her school—for that matter. Yes, she was failing there, too. Teachers and aids were becoming afraid of her as well. Meghan was not happy and she was letting us know.

Visiting residential schools and listening to them (schools that we respected and that had an excellent reputation) was the key to understanding and helping us in making the right decision for Meghan. It soon became clear that she belong to a school that—not only understood her needs—but also could help her live a more productive and fulfilling life—A future.

As some of you know, we chose a school with an excellent reputation with helping and working with children with autism—and this was the only option for us. Even though Meghan was attacking me at home, I would endure a few hair pullings and biting and scratching for peace of mind later… and it took much later, consequently, a year's worth of waiting, but it was well worth it. (I must point out here that she was not attacking Nick—her brother—only me. I think that she knew that by hurting her brother she would be crossing a line. And she would’ve been right!! Intuitiveness on her part that helped her in the end—she’s now at the best school that she'll ever know!)

Today we know that Meghan is doing fine. She's going out into the community. She's learning at school, again. She's happy with her roommates—her friends, and the teachers all like her and they all like each other.

We all like life a little better too!

The Ultimate Sacrifice...Raising Autistic Children

Self-sacrifice: sacrifice of oneself or one's interest for others or for a cause or ideal.

I want to talk about this word: sacrifice…especially in light of John Edwards’ infidelity and indiscretions. What was he thinking? Well actually what do a lot of men (and some women too—I’m not being sexist) think when they hear the word sacrifice? Or do they?

I know for fact that most women do and have to ... sacrifice. Look at the latest study of which sex ends up happier: it’s the men.

Let me tell you a little secret: I know this one man who cheats on his wife. No, I’m not gossiping, it’s just a fact and a point that I’m trying to make and understand. He told me that the reason why he cheats was: he felt like he just didn’t have enough!

I know for fact that this man has a wife who also works—part time, and has a nanny helper. His wife also does all the cooking, cleaning, and is the primary caregiver of their two children. He works his one job and is grateful and happy with his life, his job and his two healthy children, but, still, he cheats, because—he needs more!

When I was pregnant—and I can safely speak for all women here— we sacrifice quite a lot to bring a healthy child into the world: We watch our diet, we exercise properly, we visit the doctor often and we pray we’re doing all the right things … hey, our other half can’t do it, so we have to make the sacrifice, and gladly do.

Then we women work full time or part time, we arrange child care, we are most often the one to bring our kids to the pediatrician, to stay home when they’re sick, to wake up in the middle of the night to feed and comfort them …. We sacrifice.

Now just add in the 1 in150 chance that your child will have autism, and a whole new sacrifice is welcomed into your life and it becomes—a whole new world. And we no longer make the usual sacrifices to welcome a child into our world; instead, we are forced into their world, and changing everything that we are and already know. It’s the path less traveled and a hell of a lot bumpier. Without a question, it’s the ultimate sacrifice:

The education, the doctors, the therapies, the financial drain, the emotional impact, the higher failure rate of our marriages (75% rate), the sometimes wishing our life was over…because, it kind of is. But we do it and sacrifice our own happiness for our children’s happiness and their well-being. Again, it’s a total sacrifice.

So when this man admitted to me that he has it ALL but needed more…. Well I’m still chewing on that one!!

Residential School: Structure and discipline

It has been one month to this day that Meghan has been living at school: at a residential house a few miles away from her new school. How’s it going? I think Meghan is doing great and most important—she is happy and happier!

We visit her every Saturday (a 3 hour round trip drive). The school and (residential) house components are very structured. But, of course, I knew this already—that was the whole idea in the first place. I just didn’t know how strict (or rigid) the routine and level of discipline enforced at school and house were—until yesterday.

(Incidentally, visiting the house weekly is the best way to see how things really are and to get to know the staff and other students with whom Meghan is sharing her teenage years; as opposed to having her come home right away on the weekends—it’s a great thing to do.)

Back to yesterday, we were outside in the yard playing on the swings and the kids were running under the sprinkler and were wearing their bathing suits. It was fun to watch, but we definitely felt that our presence was preventing Meghan from playing freely with the other kids—as she might have otherwise.

After a while the girls went back into the house and had to change their clothes. I went along to the bedroom as well (because I am a girl) and thought I would help. Well, help, I could not…because Meghan wanted to keep her bathing suit on and put her clothes on over her suit, as she had done before at our house. But that was not the rule—or the way of the land while living at school, and the teacher enforced the change-back into her underwear. Personally, I just had to leave the room and go back downstairs and wait for Meghan with the rest of my family.

Meghan knew that I would let her keep her bathing suit on so she was trying to get me to say yes to wearing her suit—directly opposite to what the teacher was enforcing. Yikes! I guess I’m either a very lenient mother, or this program is pretty strict and super organized.

It certainly makes sense that this level of rigidity (if you will) has to subsist; for autistic kids (and 8 under this residence’s roof), this type of unwavering structure in their daily life is considered a source of comfort and does help kids with autism feel safer and happier, at least for Meghan; and a form of security and control of knowing what to expect in her day—to a tee—via her communication schedule and books. But as a mom, it was hard for me to watch her not get her way—even for such a little thing like wearing her bathing suit under her clothes. I mean I saw that little angel face looking up at me—that one that says: oh, please…and the one that I know and love—so what would you do?

But in retrospection, I am certain that it’s for the best: I remember last summer (and the summers before that, even) when Meghan got used to wearing her suit under her clothes and then had trouble switching back into her underwear when school started; just one of many channels of frustration—for both mother and daughter. So I get it!

Living with Aspergers/Autism: personality/disorder

Living with aspergers is probably the most interesting component of being a parent. Hey, who wants to raise a boring, typical kid anyway? Aren’t they usually materialistic and just hang out with their typical peers and age appropriate friends? Yeah!

But I’ve got someone else who has a very interesting approach to life and verbal spew. My son, Nick, tells me how it is—how it really is, and to everybody else as well, for that matter. I love this component to his personality: a telltale sign that he will always speak his mind freely and openly.

As with most people/kids on the autism spectrum, they do not understand little white lies, sarcasm and figure of speech…

For instance, when I ask Nick if I have wrinkles on my face—like around the eyes and mouth? He says an emphatic—"YES! "

Do I need my hair highlighted, can you see my roots, Nick? —"YES! "

Do I look a little fatter today than I did yesterday, Nick? …Well you get the picture.

One does not have to be autistic to be this painfully honest, all young kids are, as we know—they haven’t learned this little, delicate skill yet; but as autistic kids get older, they still hold on to that “Oh, so cute, brutal honesty” component that makes them so endearing—but only in some social settings.

Of course we help them learn the “play act” of little white lies in society; we need our kids to be accepted and liked, after all.

Same thing goes for sarcasm and a "figure of speech" concept. I’m still trying to teach this to Nick. He takes everything so literally, and he so often will come home from school peeved about something or other… and it’s my job to ask him what happened? (This time!) And what did this person say to him? And to help him understand—it’s not personal!! (Then I need to define—“It’s not personal.”) Ugh, and the vicious cycle expands.

For instance, the other day I said to him “Oh, don’t eat Wasabi, it's so hot (spicy) you'll die!” Uh, his eyes blew open and my autism meter was in the red.

He does get very mad at himself when he takes things too far. It’s his nature—the perfectionist (OCD) side of his personality (disorder); or when he can’t do something successfully the very first time, like win at his Nintendo DS or Wii games; or even ride his bike—his temper goes into overkill:

Personality and disorder—tell me, does one define the other? Nick’s disorder does affect his personality in more ways than one. Outside of his autism lies a boy who is fun, easy-going and has a great sense of humor. Which other people also enjoy and love him for.

The other side is his monster: OCD, perfectionism, anxiety-ridden burden that he is learning to live with (and me too); to reduce it, to shrink it down to an itty-bitty flaw and nothing more… I mean we all have flaws; no ONE is perfect.

That’s my job!

More on Disorders

Oh, To Be Retired at 14

We feel like very bad parents… I say this because our son Nick (who has special needs) doesn’t know how to do the one thing that just about every kid takes pleasure in across the globe. This thing is (gulp)…riding a bike. Oh holy confession!

We have had many bikes for him through the years and have taught him to enjoy his bike with training wheels attached, as all parents do. But when the time came for taking the training wheels off and making him learn to ride without the extra wheels (tough love, tough love), he did fine. I remember the day very well. His father would start him off and run with him until he got the hang of it--and after many tries--he did it and I remember how the tears welled up from my eyes!!

This very day was also the first time I heard him use the word "retired." “I’m ‘retired’ from that” was what he said, and I thought he said “tired.” So I would say, okay we will try again some other time…yada yada, yada.

Well, “some other time” didn’t happen very easily. He just has no interest in trying. I mean, we have tried--oh, boy, have we tried to get him to ride his bike. And again, “I’m retired with that.” (Tired? Tired?)

So FLASH forward a few years to present day and my son and I are driving through Starbuck’s (daily event, people) and we have almost the same conversation:

"Want a cookie, Nick?"
"Yeah!"
"What kind?"
"Chocolate chip!"
"Okay, got some money?" While holding out my hand as if to say: hand it over, buster!
Sometimes he just digs through my purse and pulls out whatever he finds—cute, huh!
Or he ignores me as if this silly game isn’t funny anymore.
And the latest time he said “No, I don’t have any money!”
"Well then you’ll just have to get a job and make some money!!" (half kidding)
"NO, I’m not going to work. I’m retired."
"Oh Really!!!!"

SHAZAM! I finally got it!

It’s my father’s fault! (Yeah, that’s right--blame him!) But whenever he goes over to my parents’ house for a sleep over, he notices that “retired” Grandpa is living the life:

Grandpa watches TV whenever he wants;
Grandpa and Grandma (blame her too) go off to the movies, the ice cream shop and the fair (oh, my); and he even plays on the computer everyday too!!

Hey, it’s the “Retired man’s life” and Nick has clearly tuned in and is all over it like a BAT out of Hell!! HELP!!

More on Gross Motor Skills and Aspergers/Autism

(Notice all the references to Superheroes!! Nick would be impressed! (see previous post) )

Good Therapy

My son sees a therapist with me every month because he is on medication for his anxiety—Luvox, which has worked well for him. The therapy appointments are wonderful and I highly recommend it for any child on the autism spectrum. It’s a place where he can discuss his feelings and mine too (Yeah, I sneak stuff in, too—don’t you know it!!), but it’s also a good exercise in social skills and one-on-one interaction. And, also, since we only see her once a month, we can actually see and monitor Nick’s improvements in communication.

The therapist is someone who has spent her career working with kids and adults on the autism spectrum, so she is very familiar with Nick and his disorder—which is vital to a good patient/therapist relationship, obviously—otherwise, the therapist would probably hang herself due to all of Nick’s narrow-minded interests and perseveration tendencies (Oh, don’t I know it!!). This 60-something year old therapist doesn’t mind talking about superheroes once in a while, but she would like to change the subject and does…to help teach him good communication manners. But Nick’s clever—I’m telling you, because the last time she tried this trick, he found an in: He wanted to talk superheroes (I knew he did—I could tell that he was bursting at the seems to ask her about the latest superhero movie that she saw (or didn’t see) and why, why for the 100th time doesn’t she like Batman and Spiderman??) but she changed the subject to science and then the weather came up and BINGO, Nick’s eyes blew open and the smirk shined through (and I knew he was up to something) and he said I saw lightning the other day! And the therapist was thrilled and asked him to tell her all about lightning, and he said it was like flash---ah, Flash Gordon—that is!! (aka, superhero)

Ugh!! We all laughed.

Aah, it's Sooo good to watch someone else try to do the mothering!

Michael Phelps' Story--An inspiration to children with a disorder

The Michael Phelps story is an inspiration to anyone who has special needs or has a child with a disorder. (Here) I don’t blame his mom, Debbie, for being jubilant and expressively proud of her son. Lets face it, any mother of a child diagnosed with a disability and who has worked as hard as she has at helping her son overcome his disorder, as well as advocate for him throughout his school years, deserves to be as enthusiastic as she wants—she is his number one fan.

I say this with conviction, as I read another person's blog and that this person pointed out that she was a little too enthusiastic and that she needed to calm down or else she could hurt someone in the stands, so to speak, but that was the gist of his comment. Obviously, this guy does not have a child with special needs or understands what it’s like to raise (or have raised) a child with a disability. Not only did this mother help her son overcome his deficits, but he is winning Olympic metals like no other.

As you might already know, Michael Phelps was diagnosed with ADHD as a child. And as a mom, teacher, and advocate for her son, Debbie Phelps had worked to overcome her son’s disability by engaging him in activities that evoked excitement and passion—such as swimming—which has proved to be an effective form of therapy—in more ways than one.

Some people question the relationship or link between autism and ADHD as indicated in this link here. In my opinion, as a mother of two autistic teens—one severely impaired and the other on the PDD and aspergers side of the spectrum, and who, incidentally, also has a brother with ADHD—interestingly enough; and since some doctors/researchers believe that genetics play a bigger role in these disorders: autism, aspergers, PDD, PDD-NOS, high functioning autism as well as ADHD, is it fair to say that all of these disorders can be included within the autism spectrum or under the "umbrella of autism”—since it’s quite a large umbrella—indeed, and that there are interesting and correlating similarities as identified in this link here?

More on Michael and Debbie Phelps from this ABC video.

Let me know your thoughts?