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?

Let's Talk Social Skills

Let’s talk Social Skills…

My son, Nick, has Asperger Syndrome (or mild autism), and as a child with AS, he has a very difficult time in social settings, or better yet, he avoids social situations like the plague. It is actually excruciatingly painful (figuratively speaking) to watch him NOT socialize or run away from a peer who approaches him to say hi. One day we were at our local pond for a swim and a boy from his class called out to him and came running over to say Hi. I was all smiles and thinking: It’s a boy, a real boy coming to talk to him! But Nick practically ran into the woods to avoid a conversation. Arghhh!

I’ve tried two different social skills classes to help him improve his skills, because let's face it, running away from a nice boy who wants to play, is not a boy skilled in social behavior. The latest social skills class was for an entire year and mostly one-on-one learning/coaching from the teacher, something that she felt he needed; the class prior to that one had more kids participating, but Nick didn’t apply any of the skills he learned from either of the two classes to everyday life. Hence, running in the woods when a boy says Hi.

Last year I had him take track (7th grade)—something that I knew he liked, and he did great. I showed up for all of the meets (but he didn’t need me, Yay!) and he enjoyed himself and was happy (enough) and comfortable (enough); however, he didn’t chat with anyone but the coach—and even she had to pry anything out of him.

I’ve talked to him about this issue and I’ve told him that it’s rude not to say hello to someone he knows and who says hello to him, like in the halls at school or at the mall (seen that one too) because that kid would get his feelings hurt. His reply to my attempt to appeal to his “softer side” or conscience was that he would still prefer not to say hello: “It's too hard and I’m too shy, I can’t do it.” He would say.

I know, of course, the reason he avoids talking or making conversation is because he knows that he is not talented in this area. But practice, we do…when we have people over for dinner or other social events, we do encourage the kids to sit with the adults and have them listen and participate, and by having guests and outside family members encourage Nick to participate (in a fun and humorous way) usually does the trick; he eventually opens up.

So I’m hoping that he will outgrow this “shy stage” during the next few years, like other things he has outgrown—like hugging his mom, for one.

Learn more about Asperger Syndrome (AS) Here.

Does anyone relate to this problem and can offer some advice?

Walk for Autism

From Autism Speaks:

Southern New England Walk Now for Autism Sunday - September 21, 2008Colt State Park - Bristol, RI

Walk Information: Our walk this year will be on Sunday September 21, 2008. Registration will be at 9:30am and the walk at 11am. We are excited to announce that our walk site this year has changed to Colt State Park in Bristol, RI. For more information please go to http://www.riparks.com/colt.htm. The walk will be 1.5 miles.


New Hampshire Walk Now for Autism Sunday - October 5, 2008Greeley Park - Nashua, NH

Walk Information Our walk this year will be on Sunday October 5, 2008. Registration will be at 10:00am and the walk at 11am. Our walk will be held again at Greeley Park in Nashua, NH. We are pleased to announce that our band from last year Steve and Friends will be returning. On walk day there will be face painting, bouncing houses, massage, popcorn, drawings for great pizes, and arts and crafts.

To register for the walk please go to www.walknowforautism.org/nh.
Interested in volunteering on walk day? Please email newhampshire@autismspeaks.org for more information.

Making Friends with the A Word

Having trouble meeting new friends or new people for that matter? Well if you are a mom of two autistic kids, then you sure are!?

I have always found the moments of seeking, finding (stalking) other moms who seemed approachable, friendly, and kindred-spirits to be an adventure—perhaps more than most? But it never seemed to work out passed the “Oh, and this is my autistic child...” stage.

One day I was talking to a small group of women who seemed nice, friendly and “potential.” (Hehe, I’m in!!) One of the ladies, who I also knew, liked to have women over to her house for lunch. So one day I noticed her approaching my car and smiling at me as if she wanted to tell my something and I was thinking: Yahoo! She gonna ask me over for lunch, or better yet, cocktails! So I rolled down my window and flashed a big, fat sure-let’s-have-lunch kind of smile and she said:

“Oh my God, I didn’t know you have two of ‘them’” and handed me a prayer card of Saint Jude. Needless to say, quoting “Oh my God” was the only connection we had that day. And no luncheons for me—sorry!

Okay, I lied, she eventually did ask me over, (she probably got desperate) and while we (my kids and I) were sitting at her kitchen table eating crackers/cheese and sandwiches that she had made for us, she was “literally” vacuuming around Meghan (with her little mini-vac) the entire time (if you can imagine that?) and then said to me as we were leaving, which was sooner than later, “Your house must be a mess!”

(Yes, frankly, Bitch it is!!) And for the record, there were hardly any crumbs under Meghan’s seat!

I also used to go to this one fabulous park. It was so fabulous that it was well worth the 20-minute drive that it took from my house to the park. With two autistic kids in tow and me empowered (wired, rather) drinking a whopping size ice coffee from Dunkin Donuts (pre Starbucks in my town) and, of course, the convenience of a drive-up window: Oh, come now, how could I possibly go anywhere without it having a drive-thru window!? Really? I even got bread and milk this way one day: “I’ll have a large ice-coffee, two cookies, half a dozen bagels and oh, yes, enough cartons of milk to equal a gallon…” (So what’s taking Stop & Shop so long to come up with their drive thru window, huh??)

Again, this park was great and a popular mom spot—every time I went there, there were new faces to meet. And before my daughter appeared to be autistic (too young to notice) I would have great conversations with other like-minded women/moms. Until one day. Oh, you knew this day was coming…when people noticed that Meghan was just a little, um, different than the other kids. Women would walk up to me--big, white smiles, and be very pleasant and nice, until they asked: “So which one is your child?" Then off to the other side of the park they would sprint.

One day I went to sit at the sandbox with Meghan and the other moms got up and left—all at once, too (a mere coincidence? Uh, No!), how obvious and very painful—for me, thank goodness not for Meghan—that was one consolation! One mom, however, lingered and smiled and then asked the inevitable question: “What does she have?” It still stunned me (even though I kind of expected it) but it broke my heart to hear…
“Autism,” I said.
“I thought so, she said, “I teach special ed.”
(of course you do, I thought!)
And then she left with her perfect little girl—and was gone, bye, bye!

So, that's my earliest history of making friends…fun, huh! They might as well have sung in unison: Hey, look at the lovely lepers on this nice, sunny, summer's day trying to fit in!! Hey, at least they didn’t poke us with sticks and tell us to get away! Now that would be awful!!

I still went back to that park twice a week and, let’s just say, was just a little less interested in making friends…but how could I anyway with two autistic kids running in different directions…sometimes I wonder just how I did it!

An Ode to the Perfect/Not so Perfect Child

Oh, the sad stories we hear and tell:

This story was reported via the Telegraph (here), which conveyed that show business is just that: show business. The cute little girl who sang at the Olympics and who has gained world attention was just a prop: a cuter alternative to the real singer--whose only wrongdoing was her appearance of buck teeth.

Please tell me how this poor 7 year old (Yang Peiyi) is supposed to feel about herself? That she’s—what?—not good enough…even though she won the “grueling” competition to sing at the Olympics, and did sing, but she just couldn’t show her face or be recognized for her talent—until now, also reported in the Washington Post (here).

This is no different than what most parents of autistic/asperger children have to face and advocate for the rights of their child to participate with their typical peers. The brutal “not good enough to participate” in a typical classroom, school playground, school field trip, band... is what our kids are understanding and recognizing—no wonder why my kids are so shy.

Tell me, how many ASD kids “learn” to feel inadequate from the start? If you’ve seen what I’ve seen through the years, then the answer to that question is: every single one of them.

School administrators or directors would just look at me and nod:
“Yes Mrs. Collins, she is participating with her typical peers” (cue, fake smile)

Or

“Why, why do you want Meghan to be integrated with her typical peers, Mrs. Collins? "
(I think the ignorant school principal asked me that one.)

"Well, why do you think you f…-up!! " (No, I didn’t actually say that, but thought it though, while reuniting my lower jaw with the upper...)

Arghhh!

Yes, I’ve learned to get along with all of them: teachers, principals, school officials...and, let’s just say that it doesn’t hurt to send an informative (OK, nasty) letter to the school superintendent to make sure things stay—how do you say— “within our children's civil rights…”

But sport your big smile and muddle through to the next inevitable battle with the ignorant...

The Nonverbal Child

One of the biggest challenges that I’ve faced with Meghan, as opposed to Nick, was that she is nonverbal (here). I've tried and tried to get her to say words—and she would try and maybe say one word, but it was just too tough for her; some verbal approximations and nonverbal gestures are about all she had/has for communication skills, besides—tantrums, screams, pulling hair and biting—ouch!

We use(d) (PECS) communication books and augmentative communication devices (here) —3— to be exact. The only problem with the devices (electronic output) were that they were prone to breaking or malfunction (hence, "3"), especially if…um, the child is a little rough with it—like flinging it across the room—uh-huh!

Most of her tantrums were, of course, due to frustration; not being understood would send anyone over the edge—and I think Meghan was just better at it than most! I do remember when she was 3 and 4—and one of her favorite movies was Charlotte’s Web. I remember seeing her smile when the farm animals were talking and singing. I would sit back and watch her and wondered what she was thinking: huh, the farm animals can talk but I can’t?

How articulate that pig;
what a vocab the goose;
even the goslings repartee
—how hilarious?

Communication Disorder--this is the diagnosis--social inept. The component that make us come together: dismantled, impaired, incurable. The need still holds true for her, nonetheless: acceptance, friendships, relationships; camaraderie, closeness, love. We all need it, even the love incapable. I have always wondered who will rescue her for this right and save her from the lonely damage, other than her mother, father or brother? The promises come from and for her brother already. He has the personality—the skills to rescue himself; he will make it through the lonesome scare.

I wonder if her thumb will always be there?

I can only think that she enjoys communication of all sorts; I believe she gets the idea and that she understands a good deal of what is said to her. Does she think that she’s just an exception? I don’t know.

But she is trying to talk and I know that she is proud of herself when “out pops” a word that everyone can understand—she becomes giddy! But she’s coming along…there’s no time-table here; it’s a slow process from some autistic children and if she’s learning to be patient--very patient, then we must learn to be too.

More on apraxia of speech Here.

Life at School/Life at Home

We all visited Meghan again (her grandma and grandpa came along too) and she seemed happy and looked good. But I’m still trying to get used to having a child out of the house—and at the tender age of 13. It all still seems surreal to me, especially when I visit her at her house and observe her in this new environment looking comfortable—like it’s home—home away from home, that is.

I pass her room at home, walking from my room and passing her dark, quiet room; quiet without her bouncing around, slamming doors, running down the hall and jumping on everyone’s bed—a presence, for sure—of extreme proportions. Now it is so quiet, Nick really isn’t that “wild-like” running through the house. I can actually read in my bed, watch television and know that I can actually sit through and finish a movie…but surely a lost presence and a dark, spiritless, yellow and pink bedroom is what remains—I pass through and try not to linger too long and "feel" too much.

Do I still think that residential school was the right decision for Meghan? Sure I do; she is on a stricter schedule and diet, she is getting proper exercise, she is doing well at school, and she is starting to socialize more and gain more independence--and with so many more teachers on-hand—she is far more cooperative and manageable. This is good for her, frankly! The teacher’s have always said that it’s a tougher transition for the parents than it is for the student (child)—I hope that’s really true and remains true (I think it is), because let’s face it, I’ve exhausted all other options: tried four different programs, had in-home care and help—but all have not worked. Residential school seems to be working and I’m crossing my fingers, everyday.

We are at peace because we know that we’ve selected the right school for her. If we had to have her go to residential school, then it was going to be the best school in the state—no exceptions—and we held out and waited until she got in—and in the nick of time too, because 14 is the cut off age!

And so the residential saga shall continue…. I think I’ll go eat a pint of Super Fudge Brownie Chunk and watch a movie—just because I can!

"Autism on a Bad Day" Poem

“Autism on a Bad Day’

The boiling point, melt down, crying fits,
Fist punches, hair pulling, I’d be lucky to come out clean,
Without the beating red. It sounds dysfunctional, perhaps it is.

A part of the brain that doesn’t work quite right.
A wiring that went wrong, if you will. Doctors,
Researchers, Scientists still can’t explain it, so how can I.

I pray that a melt down happens at home
Or while she’s at school—with the well equipped—
Teachers who can handle it, without the tears.

I lift weights, I need to, because in public, and she melts downs,
I must use all my power—my might, keep my cool, say a quiet
Prayer, while heaving the 40+ pounds of fighting, dead weight.

Her legs in the air, 90-degree angle (no angel), pushing against
My crotch, ripping her clothes off, finger nails digging,
Be lucky if she doesn’t bite—no easy feat being 100 pounds petite.

I just do it! People wonder how, praising me endlessly,
As if autism were my choice. And it scares because I forget
Just how much harder I have it. Ignorance is bliss, don’t forget it!

I look around to see, when I choose to see
A typical child and it catches up with me—and it’s hard.
But I must bring myself back to my world and just do it!

“We can do it” an old tin reproduction of a woman demonstrating
A muscle hangs on my kitchen wall, depicting wartime; my
war too--just different--and a reminder when it gets too tough.

Movie Time

For all of those movie enthusiasts: I recently saw the movie Mamma Mia with my mother and aunt (so I’m glad there weren’t any sex scenes) but a pretty good movie, who knew that Pierce Brosnan could sing, and Meryl Streep for that matter—she was amazing in this movie. Fun and delightful is my rating, although, I probably would not have seen the movie if my mother and aunt didn’t ask me to come along…even though I like the music of ABBA (Oh, should I admit that?).

It was fun and entertaining and not racy, so you can see it with your mother and aunt and grandma too—what the heck, get all your good deeds done all at once…because I did noticed that I was the only one under 60 in the movie theatre--Yikes!

Conversely, it was nothing like Sex and the City, which I also saw—without mom—thank God because that would have been embarrassing… and a forever relationship changing “horror” due to “its” sexual content. Heads up for all those laughing husbands who would rather die than see Sex and the City with their wife or girlfriend or either ;)—because there was a sex scene (or two) OF YOUR DREAMS in this movie!!

I went to this movie alone…yes, sad I know. I had the benefit of being able to get a sitter and shortly after jumping for joy, I grabbed my purse and flew out the door--think the sitter actually heard my car burning rubber down the driveway. So I went to the movie and had some alone time and, of course, "happily" obeyed the turning-off-my-cell-phone rule (hey, gotta do my part as to not irritate my fellow man) realizing, too, that this would abolished any notion that the sitter could actually call me (screaming in horror) to come home... But, of course, while feeling that "motherly-guilt" --as I certainly did, I soon got over it while inhaling my bag of popcorn--love movie theatre popcorn, just love it!!

To tell you the truth, I’m sort of glad that I went alone, because at one point I was sitting there thinking that if I had brought a friend along, then I might have been pretty embarrassed just the same. Or maybe I’m just being prudish, I don’t know? But the movie was entertaining, funny and, YES, very sexy!

Has anyone else seen this movie? Or care to admit to it as I have??

Life At Her New School...

Update on Meghan:

She is doing wonderfully!! She really is. She likes the structure and the group of women/teachers who work with her throughout the week and weekends--and they like her; they said that they were so impressed with Meghan's ability to adapt to her new surrounding/schedule and fit right in right off the bat. Right now she is staying at “her” house for up to 5 weeks before she can start coming home on the weekends, if she even wants to. It seems like she is enjoying her time at school and at her house, with all the girls, just that much.

We visit every Saturday and last week she played ball with us and then showed us around her house (a typical 1970s style colonial house in a suburban development with similar style homes, set up with easy, fun furniture)--she entertained us with her new found ability to work on the treadmill and the stationary exercise bike--just showing off for us! Then she likes to show off her room (a large master bedroom shared with two other girls--get this, girl's names: Molly, Maggie, Meghan and before Meghan was Maria!!) they all have their own television and they like to share with each other what they're watching at night--it's like a slumber party, apparently, minus the pillow fights!

After about an hour or so, we left and she was waiving bye and kissed us…Wow, she really likes her new school, I must say!

Soon, they will take Meghan out in the community: They will go to parks, shopping, and restaurants with their group of girls...and continue to reinforce acceptance in the community.

Life is different for us at home too. Meghan commanded a lot of attention and required a lot of help, so life is easier for me too. Nick is getting the attention from us that he needed and it's a lot easier to go out knowing that we can have a day out without worrying if it's going to be a: good, bad, or ugly kind of day!!

So it’s good! But Meghan is happy too and that's what is most important to us! Isn’t that what we want for our children, foremost?

And hey, I can finally go back to work after 13 years--Yikes--will someone hire me???

Candy Cigarettes for Kids---Why??

My son, Nick, has a mild case of OCD (Obsessive Compulsive Disorder) as do a lot of kids on the spectrum, but I think it is fair to say that he does become overly obsessed about a subject, person, or a thing more than his typical peers. In the past it has always been about Superheroes: Spiderman, Batman, Superman--you name it, he’s obsessed about it. However, his latest obsession seems to revolved around--now get this--candy cigarettes.

I don’t know how exactly he made the “maturing” leap from superhero video games to cigarettes; I can only tell you that we are NOT smokers, and we don’t have friends or family who smoke; but someone in society has struck his interest, or maybe school health class because they did a series on: Why you should not smoke and "showed" a video. Either way, he picked up on smokers and is now--obsessed. Now he does know--from health class and from us-- that smoking is unhealthy and I reinforce that smoking is very bad--causes addiction, and can shorten your life…blah, blah, blah…is probably what the boy has been hearing because he’s still obsessed with the subject. A phase, perhaps, but listen to this little adventure:

We were away for a week at the cape (Truro) and went to the flea market that is set up at the Wellfleet Drive-in Theater--if you know the cape, then you know this place. Well don’t you know Nick spotted a toy cigarette; looks real, but, of course, it wasn't and, "dontcha know," that his father actually bought it for him. I was floored and Nick was in make-believe cigarette heaven...

“Good God!” was what I had to say along with a little prayer when Nick and I were waiting inside our minivan for my husband and daughter to finish up shopping, and I had the van door wide open. I casually notice two older nuns walking by from a mere distance and were, seemingly, interested in our car--Hmm, I thought, so I turned to look at Nick seated in the rear of the car. He was relaxing back, feet up on the seat and just puff, puff, puffing away on his “cigarette.” Puffing as real as a real cigarette would look--the boy could have won an academy award for his role under the category: “Fake-Cigarette Smoking.” Horrified, I looked at the nuns, the nuns looked at me, we all looked at Nick, and Nick was just smiling away and oblivious… and if my face looked horrified, they looked like two sopranos singing in a choir. I had to turn away and laugh--just a little--but what else could I really do? Jump out and yell across the parking lot: “ It’s just a ‘toy’ cigarette that my 13 year old is puffing on to his heart's content and that I ... um… bought for him..." Yeah?… NO!! I let it go and I “prayed” that they would just keep on walking… "Have a nice day, Sisters…”


Candy and toy cigarettes need to come off the market!!

A Pet Peeve

Pet Peeve…Pet Peeve…OMG, I’ve got a Pet Peeve!

I was having lunch earlier today at one of my favorite restaurants…Legal Sea Foods, and it just so happens to be very convenient to where my daughter, Meghan, is living at school—can you say, "Smart Mummy!!" And even smarter mummy to get her kids’ father to pay the bill!! So, I was sitting there enjoying the cozy ambiance of the restaurant while very happily sipping my Pinot Grigio and people watching next to noticing that my son had just devoured every single one of the four pieces of bread that, I think, was delivered with our drinks…I know this because I saw the incriminating trail of crumbs leading from the basket to his mouth, accompanied with opened slabs of butter laid out before him, and not to mention his big bulging chipmunk cheeks looking back at me when I asked him where all the bread went…“Don’t answer that, Nick, it’s okay!” So, while people watching, I saw a common Legal Sea Food sighting: somebody eating a lobster. In this case it was a man who had ordered the lobster and was, as he should have been, digging in and devouring his food (as did Nick with the bread), biting the legs and sucking out the succulent meat while hovering over his plate…No, this is not my pet peeve. I, too, would be sucking out the meat of my lobster legs—especially at the market price, whatever that was, but at Legal’s it’s gonna be high. No, my pet peeve was the unmistakable lobster print bib that he was…um, wearing. Now please argue with me if you think that I’m being much too critical, but why actually wear the ridiculous plastic bib that, again, sports A Big Fat Red Lobster printed smack dab in the middle of your chest, not doubt. Yes, it comes with your fancy food—if lobster is fancy—but do you actually wear the ridiculous thing? NO!

Now I always think that after the waiter serves someone their lobster and runs away, that he and the rest of the gang--his co-waiter buddies, that is--all huddle up and peer through the kitchen’s circular window--all of them, including the cook who boiled and prepped the juicy, red yummy, and watch to see if the fool actually opens and unfolds the BIG RED LOBSTER bib and actually tie it on. I bet they’re taking “bets” to see if he does, in fact, tie it on. And when he does, tie it on, “cue” the hysterical laughter and then “cue” the timely conveyance of the quick cash very discreetly under their aprons …

I realize by now that you can probably tell I don’t wear my bib when I order lobster, obviously not—it’s foolish. Lobster isn’t even that messy to begin with. Sure it can be a bit juicy, but so is steak; and sure it comes with butter sauce, but what doesn’t come with sauce. You’ve got a better chance of spilling red wine down the front of your shirt than the lobster…but you don’t see bartenders handing out big plastic bibs with a “Mr. Big” red wine glass--tipped slightly askew-- imposed on the front and tied securely behind the drunken slob's neck, now do Ya?? That would be silly!!

The white cloth napkin placed discreetly on your lap is sufficient enough to catch any loose drips of the buttery yum-yum before your tongue takes over…and if you’ve got a tongue like mine, it surely will—or, besides, isn’t that what your chin is for??

Before we left, I casually noticed our dining neighbor eating “her” lobster, digging in and enjoying every bit of her juicy, mouth-watering lobster and without the fancy bib! Hey, that’s one bet the rich guy lost in the kitchen…That’s my girl!!

"Imitation" Poem

Someone (Okay, a good friend) asked me to share more poetry, so I thought I would offer some from time to time or when I feel that I have 'bloggers block.'

The following poem was inspired by Meghan, who was about 3 or 4 at the time, and who started imitating me while I was getting ready to go out one evening. I always remember working very hard to get her to imitate my behavior--something that is hard to do and teach a child with autism, especially in the early years; tirelessly, I would try to teach her something and have her follow to no avail. But on this particular late afternoon, she came up alongside me and did the unimaginable of which inspired a celebration and tears than just this poem...

"Imitation"

Looking to the mirror on cue:
Standing naked at the mirror—the way she likes it:
Brush in hand,
Long string of pearls draped around her neck,
Long side to back, swaying above her bare seat.
Looking to the mirror on cue:
Powdering nose
Looking to the mirror on cue:
Dabbing lips with rose
Looking to the mirror on cue:
Coloring eyelids to and fro
Looking to the mirror on cue:
I notice the sweetness of a child
Who longs to be like me;
The imitation is perfect--
And necessary
For a mom to glimpse:
That she will be okay—in the normal way
And we smile:
Looking to the mirror on cue.