Kids' Update...

As you might know I have not spoken of Meghan in a few weeks… that is because all is boring on that side of the great kid divide.

What I mean is: Meghan is doing wonderfully. Really. She has a good and consistent life (home and school) and she’s comfortable. At school she has a daily calendar of schoolwork (Which she loves—now how many kids love to do schoolwork?—she’s going to be a genius when she grows up!!) and then she has activities, special programs and she goes swimming twice a week. And when she goes to her “house” she does more (request) schoolwork, colors, and plays a game with one of her favorite friends…Oooh, did you hear that? She has a friend… It’s funny because when I receive a weekly call from Meghan’s assigned house teacher, she tells me that Meghan is the most social student (at least of the 8 girls at the house). It brought me back to when she was four (two year after her “severe end” autism diagnosis) and we were seeing a neurologist at the Ladder’s program in Mass. and the doctor said Meghan was special from the other (severe) autistic kids she knew because she said Meghan is “social.”

And it’s true, to a point. She is not what I would call a social butterfly; looking to entertain kids and people around the clock… but she has always been willing and able to acknowledge people and work for their attention— positive or negative, either one—she doesn’t care; she is not looking to please anyone but herself. If you think about it, isn’t that the way of a well-adjusted person? Looking to seek pleasure from others, but not willing to give a piece of yourself for the sake of others. It’s the attitude of a well-adjusted person, but not necessarily a person who would keep a lot of friends. Interesting, isn’t it?

On the other side of my kid divide is a boy who sits on the opposite end of the spectrum (high functioning) and could attract so many kids if he were…well…social. Just a little social; a small chapter from Meghan book is all that I would ask for; to balance his willingness to please with some social skills and an interest in other kids--of any kind, would be a great gift—for him. And maybe a little bit of healthy work ethic to go along with it, too. He hates school and work (unlike Meghan) and as of late, he told me that his aide gives him the answers to schoolwork—how about that for honesty!!? Ugh. And do I know this boy of mine—his handsome face, nice personality and cunning gets him everywhere!

Perhaps in time and if they hang out together when they’re grown adults--there’s hope, right?-- they would make the perfect dynamic duo (like Batman and Robin): with his ability to retain friends at a single bound, and her ability to attract them like no other…Wow, they would conquer the world and set out to new sites and actually leave the bat cave and live a life of solidarity and less solitude!!

Ahhh, a mom can only dream… and I’ve got comic books on my brain.

And at this very moment I am awaiting Meghan's return home for the weekend--loaded up with her favorite snack foods... and we will take in a day of sledding--her favorite! And I have a smile on my face... see

Happy Weekend to you too!!

Making Her Way Back

Meghan has gone back to school—her residential school. Her bus has come and gone and is now en route to school and to a place and a life that she has come to know almost as well as her life here with us. It wasn’t sad to see her off this time; it was more like our routine. But I think that I‘ve finally realized why it was sad for me before. It was sadder for me when we were visiting Meghan at the house (school) and then leaving her behind at a house that was not home--our home that is warm and nurturing and stuffed with love. I've realized that it’s so much easier sending her off to school from home—our home—like it’s supposed to be. I also realize that it’s only school that she is going off to, a place—like a job—or a college—maybe a little bit of both—where she is learning to live and appreciate a more productive and freer life. A special gift really.

That is what I told her this afternoon when she was getting ready to go back to school and stuffing her backpack with the extra clothes that she had brought home, and a lunch that I had made for her for the road, including a few extra Oreos that she would, most likely, not be seeing the likes of at school. I told her while she was looking up at me from where she was laying across her bed just how lucky she was to attend such a great school and one that she clearly loves. I also told her that it’s a great opportunity for her and that I reminded her that it’s loaded with fun activities like schoolwork (she loves) the treadmill (newfound love) swimming pool (reclaimed love) and girlfriends (sisterly love). And I told her that this school is also very expensive because it has so much more to offer her (a life) and that she is extra, extra lucky to have such an opportunity handed to her—like a gift. Then I smiled at her. How much was she understanding? I just don’t know, because she can’t communicate using words, but I noticed her eyes shifting back and forth as if processing the information. And then she smiled at me and grabbed my belly and patted it until we both giggled (it’s her way).

So she went off to school knowing full well that she would soon return home again.

A good life, really—a very good life.

A Meghan Update... her residential school progress

A Meghan update:

We saw her last week, as we do every week. And she looked great! She just has this content way about her; she’s comfortable with herself and her life. I’m so grateful. Not just for what the school and teachers do, and do for every child who is welcomed through their doors, but I’m so grateful that there was a solution for Meghan and we had finally found it. Albeit, a harder solution for us, her parents, but we can't be selfish—we didn’t have kids to be selfish and hold them back from thriving—we had kids to help them blossom and grow—and then send them off to find their own life. Even if it doesn’t sit too well for two parents who will love her more than anyone else in this world.

So, Meghan seems content and at peace, that’s what it seems to us. (Does she still need me?) An observation by two people who only see her once a week, but that's almost a better thing: two virtual outsiders (as strange as that sounds) can see through the glare and see what’s really there by not seeing her everyday.

It won’t be like this forever, she will start coming home every other weekend and hopefully it will be a success. I would hate to think that we could screw this up and wreck her progress or her continuity—and that she doesn’t mind commuting the 1.5 hour trip, each way, twice a month, which I think is a good schedule for all of us.

It’s definitely a step-by-step process and we take it one day at a time… and, demonstrably, that is just what we have to do.

One of her favorite thing to do at the (her) house is swinging on the tire swing; she swings high and wide. She also loves her schoolwork and does it for a free time activity, even; she is also using all of her communication books effectively and appropriately (she has two books jammed packed with nouns, verbs, and adjectives, and one communication output device).

She started her swimming classes, for those of you who are not familiar with her school, there is a huge Olympic style pool designed specifically with special needs kids in mind. She loves it. She swims twice a week. And the treadmill, too! Who would have thought that she loves the treadmill? She's on it every chance she can get at the schools gym and house. (She never liked it at home!!) Just more proof that she is coming into her own!

More and more that I think about it, this school is a luxury—one would gather that from its hefty price tag—and at this price—I would expect a hot tub, sauna, and cabana boy ;) but these girl are only 13, so luxury for them entails: an environment of several trained teachers at their disposal for help , guidance, and activities … it’s like having a bunch of moms (or big sisters) who are guaranteed to never get over-tired or frustrated and there’s always at least one mom who will like a particular activity at any given time. Some of the “moms” are good cooks; others like to shop; and some others are just plain playful—how ideal! Who needs just one mom, when you can have a house full of moms.

Aah, Reaping the Benefits of Good Communication ... Finally!

Ever notice that good, quality communication is lacking in almost everything we do and who we know: How many can raise their mouse and say they have the benefit of living and working with good communicators? Come on… no passive aggressive husbands, boyfriends, parents, siblings, bosses (Ugh, that’s worse!) to vent about? And lets not mention school districts and special education programs of various sorts … oh, won’t go there (that's another blog). But let’s face it, it’s everywhere … and it’s called dysfunction—and we all live with it and probably have trouble living without it; except:

Meghan’s school is right on the functional communication track—that’s right—I said functional!! And, thank God for that! Because I still feel like I’ve just dumped her off somewhere and said: Ha, this is hell now you raise her. “You” meaning a crew of people: Classroom teachers (and plenty of them) residential teachers, residential caregivers, nurses, doctors, specialists … you name it they’ve got it.

As Hilary Clinton once said: “It takes a village!” And I think she’s right!

Good, effective communication has got to be the hardest thing to achieve when there are so many people “in the village,” but it’s ideal at her school. At the beginning her direct one-on-one school and residential teacher (yes, two different people) would call me everyday to report in. And I would also call the residence too, just because I could! Then it slowed to once a week with a scheduled call from her residential teacher, who we’ve gotten to know very well (personally and professionally) from the calls and our weekly visits—she’s like a house mommy!

She tells me everything that happened during her week—information reported through computer and written documentation so that everyone knows how Meghan did /and is doing on any given day, while also monitoring her progress. I’m never without info …

I’ll even get a call from the lead nurse if Meghan is having a nurse’s visit (routine or unscheduled); a dentist appointment; the eye doctor; the sniffles … they’ll call just to report in and then call again to let me know how it went and how she did (like the dentist’s visit) and without missing a beat.

And as of late, Meghan has advanced to a communication device and is constructing sentences using it--a skill she could not do so easily at her other school and home ... a benefit to her speech and language specialist and classroom teachers, no doubt. Can't wait to meet her OT specialist and adaptive PE teacher ... they'll have her swimming laps like Michael Phelps in no time!! ;)

Again, it takes an effort from everyone--together--to help a (autistic) child succeed! And good communication is the heart of this effort. But this school has got a system that makes it all seem so easy!

Now that’s refreshing! The dysfunctional family that’s isn't!

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!

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!

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…”