Back from Vacation; Back to Reality!!!!

Woke up this week to some pretty extreme anxiety issues. Not me—Nick. I was a little surprised, because with the break last week (Disney trip), I thought he might be back to his usual self. No. Actually, he’s a lot worse off this week. Gee, I thought going on three roller coasters would have done him in; but no--school--not Space Mountain, is the culprit…

Who would have thought?

To be very honest, my anxiety was high during some of this trip. Going on Space Moutain, and twice, did me in---and yes, I screamed; and I had to hold my sister’s hand (like a scardy cat ) on Soarin’, I mean, OMG—it’s simply not the thing to do if one is deathly afraid of heights---um, that would be me! But it was an incredible ride when my eyes weren’t sealed shut! Experience the ride yourself on this you tube that I've found: Soarin You Tube.

Oh, but I digress; Nick actually had to take yesterday off because his anxiety was much too high… I couldn’t make him go while he looked like he was about to have a panic attack. Instead, I emailed his teacher about the issue and she told me that she understood about his anxiety and will do everything to alleviate his stress. This includes not going to his homeroom class after going to his locker. Instead, he will be met with an aide to go to his lifeskills classroom (smaller class and easier for him to manage) and then he will be accompanied by an aide for his other classes. The teacher will also give him a special journal to write about his anxiety when he feels the need. (I have a feeling he will be writing a book today.).

Anxiety at school will surely be continued….

But Nick had a ball with his two cousins at Disney World… Here is a little preview…

Nick at Magic Kingdom... We visited Magic Kingdom, Hollywood Studios, Epcot, and downtown Disney.

Epcot; London in Epcot; Nick and me at the entrance of our hotel; the view of the river at our hotel (we stayed at Disney's Port Orleans French Quarter Resort); below is an artist's cartoon drawing of the kids...

Vacation....

... hope you check back soon....

What a great teacher, principal, psychiatrist, pediatrician, nurse, shoe store..

First, what a great teacher…

As a continuation of my last post (anxiety issues at school), Nick’s teacher sent me this email the very next day:

Hi Mrs. Collins,
I sent Mr. S., the principal, an email regarding the lockdown. Attached is his
response. My GUESS is it will be this week, but please be sure to tell Nick I spoke
with Mr.(Principal) and the alarms are NOT expected to go off. I know Nick talked to me
yesterday about being nervous about the loud noise from the fire alarm.
Thanks so much,
(Teacher)

Hi (Principal),
My student Nick is VERY anxious about the lockdown drill. Do you
know if the fire alarm will be going off, he's worried about the
noise.
Also, I know we aren't supposed to know when it is, but he is
leaving for Florida on Monday and I don't want him to continue to
be upset the rest of the week. Is there any way to know if we are
having the drill this week? He now needs to be walked to class
with a para because his anxiety is so high. I also have his
mother's cell phone number to call her if we have it while he is
on vacation so he won't ruin his vacation worrying about the
drill.
Any help would be greatly appreciated. Thank you so much.
(Teacher)

Hi (Teacher),
The drill will be sooner than later. His vacation will not be ruined. In
fact, he will be relieved. The alarm is not supposed to go off during the
drill. Thanks.
(Principal)

What’s also great is that Nick’s psychiatrist got my message about my concern about him needing more meds (based on what I have noted about Nick)… and his response was: he agreed and has already called in a new script to the pharmacy… and all within a 24 hour period, too…. Hey!!

And don’t look now but we seem to be on a roll… I left a message for the pediatrician asking for a note, stating that Nick has autism, so that we can get a disability pass at Disney… Even though I kinda felt like a heel ... I mean, I called and had to leave a message on the nurse’s "hotline" number… “Hi, uhhhhh, I know you're busy, but, um ... we’re going to Disney next week and I wanted to get a, uhhhh, note from the doctor saying that my son has autism so he can, um (cut in line and be first for rides at Disney), get a disability pass" … Ugh... But, the nurse called me back--2 hours later-- (same nurse as always—nice woman) and said, “Of course we can do that, no problem…. Who do I address it to at Disney?" Whoa!!

And they had the letter ready for me the very next day.

Hey, we’re getting some good service around here!!

And I'm feeling so good that I'm running off to buy myself a new pair of shoes!! Yum ... They're nice designer ones at Marshalls for only 30 bucks... Hey, some healthy, guilt-free shopping-- just for me!!

Anxiety Disorder and Autism

As of the last week, or so, Nick’s anxiety has increased at school—and going to school, as well. About 3, or so, years ago, I had to take him to a therapist and a psychiatrist (for meds) to help him with a, almost debilitating, case of anxiety. We tried Luvox to relieve the anxiety and OCD, and it has worked, wonderfully, for these three years, and on a low dose, too. Just to reiterate, the OCD was like being hen-pecked with his perseveration about obsessive issues—like being nervous at school. I would hear: "I'm nervous in school, Mom" about 10 times just in the 20 minutes he would be getting ready for school. And my response? Well that was well practiced, too. I mean, if I didn't just say: "I know you are Nick," then he would get upset... apparently he just wants to hear those words--and nothing else--to help him through the issue...

So, I asked his teacher if she’s noticed an increase in anxiety at school—and that I would be calling his doctor to see about finally increasing the dose—I mean let’s face it, he’s only on 50 milligrams and went through 2 growth spurts since starting the meds (he’s now 5’7, and 14 years old), so I thought it just has to be the meds, but I just got this e-mail from his teacher…

I'm thinking part of Nick's anxiety is that we are planning a practice
lockdown drill. We don't know when it will be happening, and he is very nervous
about the whole process. We have stressed to him that it's just practice so we know
what to do in the event of an emergency. We have practiced them within the
classroom and they have talked about them in each class he attends. Until the
practice lockdown passes, an aide has been walking with him to his classes, rather
than going independently, to help with his anxiety. I'm hoping once we have the
practice lockdown, Nick's anxiety will be alleviated, as I'm not sure there will be
another practice one this school year.

Other than the lockdown, nothing else has changed here at school. He was slated to do the Pledge of Allegiance on the intercom this week which he has been practicing for months and really excited about, but has decided not to do it this week, he's just too nervous about the lockdown. Maybe he can try again later in the year.

Something to mention to the doctor; however, I’m also experiencing more frustration at home.. So I think I will be upping his meds… Tough call!

Any thoughts?

Art by Two Autistic Kids

Tooting Nick and Meghan's horn!!

One of Nick’s paintings was on exhibit this week at the Plymouth Center for the Arts through his school program called: Plymouth Public Schools’ Youth Arts Month Exhibit.



Obviously, the "artist" is not standing next to his work of art because he was embarrassed and damning me the whole time (at least that was my interpretation). Nick is a very shy guy, and if he knew that we were there for his painting, he would have refused for us to go, rejected the whole idea, and cursed out his art teacher (at least to me) for the “What’s the big idea” for hanging one of his paintings for exhibit, and for all the world to see, too!! ........... Ok, well just Plymouth!

But he noted his painting while we gushed and praised and asked for his autograph--and if it were up to me I would have called the local paper, too!! But Nick turned and walked away--as a shy, modest guy just might do.

But I was very proud of him. Not only for his art, but for what he didn’t say to a lady who was sitting in the reception area and asking people to sign in… She had a face condition, not sure what it was exactly, but it did look pretty shocking… and if the previous years were any indication, my kids would have let her know it, too. Meghan might have walked right up to her and examined her (like a doctor)… and Nick would have mentioned to me that something was wrong with her face in the most descriptive way he could… and within earshot of the poor woman, too--um, like right in front of her face…

Oh, those were the interesting years…

But not this time; Meghan didn’t make a scene and Nick waited, at least until we were safely back at our car, to say: “Hey, Mom, that lady's face didn’t look handsome.”

"Yes, Nick, I know, not everyone can be as handsome as you--or talented!!”

Being careful not to hurt someone's feelings (or understanding other people's "feelings") isn’t something Nick completely understands--still--but a least he has learned to discuss his “observations” with me in private!

Take a look at his recent skeleton and Meghan’s mask (or face) painting that is hanging on my wall:

Weekend Review

Unfortunately we didn’t have the best weekend with Meghan while she was home this past weekend. She wouldn’t go out with us very easily. We went to an art exhibit in our town that featured one of Nick’s paintings (more about that on my next post), but then that was all she was willing to do. We wanted to walk around Main St, Plymouth and check out some of the shops, just minus the antique shops with lots and lots of old and expensive glassware—Meghan has motor-spatial issues and she and glassware do NOT get along!! (Um, you may want to use you overactive imagination for just a few minutes now, and then do your quick little laugh, thing!! Don’t worry; I do it all the time!) However, she redirected me back to the car and didn’t want to take that walk …

Then we drove by a favorite casual place for dinner (for barbecue and ribs, oh yum!!) And I could just taste the pinot noir that would be waiting for me and calling out to me… come, come and drink me!! But then we "unanimously" realized that the noise and the seating would not work out for Meghan (sensory issues). In fact, if we happened to be at a restaurant that seemed loud and visually overwhelming for her (like TGIFs), then she would not do well, e.g., bite her hand in frustration, not focus, fidget and need to use the bathroom—a lot, and all of these are the fine makings of one huge temper tantrum—that means a smashed up table and coke on our laps (and one mom (me) sucking down some major wine!!)

So we drove along (very quickly) after imagining the “could be” scene at that one place… And, again, usage of your overactive imagination will work fine here, too!! And, so, we drove down the street to the beach. It was a nice day so we decided to take a walk, climb the rocks (our beaches are super rocky) and listen to the rolling ocean and the seagulls squawk….Ahhh, peeeeeace….

But, not really!! You see Meghan didn’t want to walk on the sand. A new sensory issue? Not sure. But this wasn’t the first time she refused to do what used to be a Meghan-all-time-favorite. Sigh!

So we continued to search for a restaurant that she wouldn’t reject, and after 30 minutes and continuous hand sign rejections (um, sign language that does not involve a finger—thank you very much!!) we drove home—humbled, confused, frustrated and hungry. We ordered in pizza and pasta, and Meghan ate the pasta.

Since Meghan has been living at school, we almost forgot how tough just going out can actually be with her. I’ve become very spoiled!! I've forgotten how everything used to be planned and plotted, questioned and imagined… and not without great tension! Nothing was taken for granted, and usually one of us (me) would have been on “alert status” at all times. Tough going!

Consider my new issue: Meghan loves to go sledding so I thought that we would take her to the mountains where there is tubing—I mean she’s doing so well at school and will kind of tolerate more outings…. So here’s the thing: since the snow has melted where we live, I thought that we could take her to the mountains in western Mass. or N.H and go tubing. But, what I’m worried about is that she might not get on the lift, or worse--panic, or that she simply won’t get out of the car after driving all the way there. And then we’ll have to consider food choices and restaurants that she may or may not eat at…. And if you have an imagination and a keen understanding of sensory issues, then the list goes on and on… Should I just forget it or try it? I really want to do more with Meghan, and have the type of fun that I know we can have as a family. I mean--it’s about time, isn’t it!?

But then again, my imagination always precedes me.

And I can’t even tell you how guilty I’m already feeling about going off to Disney World in a couple of weeks--without Meghan. We have never gone on vacation without her before, but for this trip—and to crowded and overwhelming Disney, we wanted Nick to have a real vacation with his parents and his two cousins who are also coming along. A little time for--just Nick--because he’s been so patient with his sister, and has lost out on a lot!!

Oh, the trials of raising two kids with different issues!! I’m sure most of you can relate!?

Nick and his cousins who will soon be enjoying time together at Disney!!

Social Skills Group on South Shore of Boston

I am still looking to start a group for kids with Asperger's Syndrome or high functioning autism on the South Shore (south of Boston). I've noticed that there aren't many --or any, rather -- social groups in my area for Nick to enjoy. As you may know, kids with autism have trouble making friends and being in social settings--and Nick is no exception. I'm not sure about your child, but Nick doesn't have many friends outside of school to do activities with or to meet up, so I thought that starting a group of friends (on the south shore) might be a great idea ... Leave a comment or send me an email if you are on the south shore and have a child with high functioning autism, and are between the ages of 6th grade - high school (Nick's in 8th grade) and wish to do fun activities together (start a social group): go bowling, rock climbing, arcade, ice skate, ski ... etc..

***Update*** So far about 3 moms have emailed me, some are also interested in a mom's dinner night out!!

http://fearlessfemales.blogspot.com/2009/01/social-group-for-kids-with-aspergers-or.html

Chicken Fingers and Mac and Cheese

One of the biggest problems that we’re currently having with Meghan at home, and at school, is her need for consistency. I know, I know, kids with autism need to have a consistent schedule, however, Meghan also wants her food to be consistent, as well.

Lately, her only SIBs (self-injurious behaviors) have been around food selection. Meghan loves to cook, so she chooses to help with dinner preparation at her house. However, she wants to cook the same meal over and over again every single night—chicken fingers and mac and cheese. (Ohhh, I know--ideal comfort foods, how can you blame her!??)

But it just can’t be; it’s not healthy to eat the same food over and over again, especially chicken fingers and mac and cheese. I’m not sure why this is happening; she was never like this before—needing to eat the same foods over and over again. I’m guessing it could be one of two things:

When she comes home (every other weekend) she likes to make Chicken Cordon Bleu (chicken filled with ham and cheese) so we make it with her since she likes to cook. It’s funny too, because every time I make this with her I’m reminded of something Nick said a few years back, when we first started making Chicken Cordon Bleu. He said: “Uh, no Mom, it’s not Cordon Bleu, it’s Cordon Yellow” (we use yellow cheese) —like duh, what’s wrong with you, Mom!! It’s funny—sometimes Nick thinks he’s so right and the world around him is sooo wrong!!

So perhaps Meghan feels it’s like a little piece of home life at school? Could she be that nostalgic? Or it could be that chicken fingers (breaded strips of chicken) is the only thing she knows how to make (and likes to make) so she, and everyone else at her house, will just have to eat it Every. Single. Night. And for the rest of their life, too... Damn it! (Some restaurant she’s gonna own someday: “Meghan’s house of chicken fingers and mac and cheese—don’t you dare ask for anything else…” Come to think of it, it just might be a winner!!)

So I’m wondering if I should stop with the chicken when she comes home? But I’m not sure we can, since she looks forward to it so much!?

Natural Therapy for kids with autism

I received this interesting website from its owner, Kaliana, who is an emotional care expert with 30 years experience in natural healing. She uses what she terms as “Combination Therapy,” combining many forms of therapy in one: herbal, aroma, color, sound, etc. As a person who believes in the power and benefits of aromatherapy, I was intrigued. Read more if interested and curious!!

And let me know what you think?

http://kaliana.com/content/childrens-study

Kay and Flo

I recently saw the Discover Health documentary on Kay and Flo. I know other bloggers have mentioned them on their blogs in the past, but after seeing the documentary for myself I was in tears.

In case you’re not familiar with these unique and incredible women, they are 50 years old identical twin autistic savants who grew up in NJ and have been passed around from family to family after their parents died. Their younger sister took them in and cared for them as if they were her own children, until she tragically died of a sudden heart attack. The women were forced to try and understand the tragedy of death in a world they didn’t completely understand. Their fragile world consisted mainly of their rigid daily schedule—as most autistic people tend to naturally gravitate to or require in order to feel comfortable and secure in an uncertain world. For these women it was the 100,000 Pyramid to feel secure—an obsession with this game show and with Dick Clark, who would later become their hero; their daily ritual; their lifeline and something and someone predictable to hold on to.

The amazing thing about these women was their unique savant ability or savantism, which was their uncanny ability to recall dates and times of events that happened in history, even events that happened before they were born. When asked about a certain moment in history, they could recall (within second) the day, date and time it occurred—like a human calendar. However, when asked about emotions and feelings based on a hypothetical situation, they were not correct in their assumptions.

What also struck me about these women was their innocence about the world around them. They were so dependent on family member for help and daily living assistance that it was sad and sometimes scary to watch. Throughout the hour program, I thought about my daughter and her life—as one might assume—and even though her life and circumstance is and will be different from these women, I learned more about what I don’t know about my daughter. As the world got to know more about these two articulate women, I learned that I don’t fully know my own daughter’s inner-thoughts, interests, feelings and what makes her scared, sad, or depressed. Today, I can only guess what she thinks or feels based on her reactions to things, places, sounds, smells—because she’s non verbal and still has not acquired the skills to write—as a conduit—to share or express her personal thoughts and fears …

As I was sitting there watching and feeling sad for these two vulnerable and unique women, I was feeling even sadder for my own daughter. I cried for her. I cried while watching my daughter’s world of autism through the life of these women, listening to their problems and their joys and trying to understand their thought process …

The program took an interesting turn as the world got to see how they reacted to their hero, Dick Clark, and the news of his stroke, and to the inevitable moment that the 100,000 Pyramid would no longer be broadcast on national television—an unexpected blow. They told the world how depressed and despondent they’d become—as if their world had dropped out from under them. So vulnerable and innocent that it struck me with immense fear—a fear for my daughter in a world that doesn’t understand her. Unlike these two women, she has no true partner in crime, confidant, or a sisterly-bond and a human connection like no other. She has no one person who completely understands her—who can relate and comfort her especially in a world that can be so cold and hostile—and when the definition of hostile seems to be one in which the world stops airing a favorite game show.

But these women have each other to walk through life with--a benevolent shadow in an uncertain darkness—two flowers that sprung from the same seed in its own unique garden. They are one in the same and different from the rest.

So I cried for my daughter who lives in a world all alone. With no one person to truly rely on, to relate to, to converse with and be understood—at least not in a way that speaks to her and that will keep her safe.

When the program ended it appeared that these two women would finally receive the help that they needed and would be welcomed to a group home that would encourage independent living—together, of course—and that they were going to be just fine. But I was far from fine. I wanted nothing more than to hug my daughter real tight and tell her that it was going to be okay and that I would never let her feel alone or insecure or vulnerable, and that I would always be there if and when she needed me—as her benevolent shadow in an uncertain darkness.

But, of course, I couldn’t do that, at least not that day, because she wasn’t there. She was somewhere else--forced to face her own fears, alone, and in the dark.