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Guests and Ghosts

Guest bloggers ... ghostwriters ... It's like Forest's box of chocolates - you never know what you're going to get!
To submit content for this blog, please email: mary(at)fredericksburgparent.net

Optimism in 2015: are you in?

ready for 2015Wow, 2015! I'm not even sure what to say, except the usual, time passes so quickly! January is always significant to my family because it marks the month when my son Roger was officially diagnosed with autism. Honestly I can't tell you the precise date. I just know it was in January that we went back to the doctor and I just sat there stunned.

Not stunned at the diagnosis. Heck we had even said to each other in the elevator we knew what was coming. It really was more of an I told you so moment for us. You see we already knew. We had known for years. But getting the doctors on board was a little tricky. As my long-time readers know I can be a little pushy. I refuse to give up and eventually we came by chance across a doctor who said, "I think your right, would you like a referral for testing at the autism center?"

Crazy, right? What's really crazy was the referring doctor was from the concussion center. We went to see her after a car accident where Roger suffered a moderate concussion. We were not even there for anything autism-related. She just picked up on some signs in her testing and that was it. Two years of being sent all over the hospital and the concussion doctor says "I'm pretty sure your kid is autistic." That's all it took. This was in August and by December we were in for testing and in January of 2011 we finally heard what we knew: Roger is autistic.

At first I did kind of go, What? Did I hear that right? At the same time I also took a huge breath. Now we knew for sure. Now we had a plan. Now we had direction. Trust me, after spending the several years having doctors find and look closer at a heart condition (very mild, no worries there yet), find a cyst in his brain (we had to wait and see what it was), and a movement disorder just to name a few things; autism, we could do that.

You see autism was not our greatest fear. When you sit in a doctor's office and have a neurologist say, "There is a cyst in his brain, but we don't know what it is, we need more testing. We need to see if it lights up." Then you wait for the tests, then you wait again for the results. Luckily for us it was ok. Just your normal everyday cyst in a brain...really that's what they told me. So yes I had been in scarier places.

I'm not going say autism has been easy. Far from it. It is a bumpy road. But I guess I'm trying to change the perception a little that autism is not something to fear. It is a lot of hard work for all involved but there are also very rewarding times. Like recently when Roger came home, ecstatic that he got a 93 on a Latin assignment. He has really struggled in that class and he yet he pulled off a 93. Sure there are hard parts. There a really hard parts, but there are also a lot of good parts.

In 2015 I just want people to stop always looking at the bad. Always looking at the struggles, while ignoring the progress. I heard someone say it or I saw it written somewhere: If you always look at who someone might be in the future you miss who they are today.

 

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Having the "Big" Conversations with Your Kids

So it all started when Laura was three and I was pregnant with Joe. We borrowed a couple of "where babies come from" books from friends who were a year or two ahead of us on the sibling curve and read them repeatedly. I don't know what, if anything, Laura remembers from those books...all I recall is that one book featured a mama bringing home twins which Laura insisted on calling "twizzers." I found that pretty hilarious. Still do, in fact!

When Laura asked me specific questions about her baby brother and how he got inside of me, I was able to get off easy. I told that I had to have help from some special doctors to get both Joe and, earlier on, her inside of me. This is absolutely true. My kids were the result of a long, exhausting IVF process. Heck yes, the special doctors helped out! Well, for a hefty fee.

I wanted the IVF to be a part of their story from the beginning, not some scary, shameful secret that we kept from them. Hence, I made it a point to introduce the medical angle to their conception very early on. And, yeah, in some ways it made the explaining a little less difficult, because, you know, the DOCTOR put the baby in me, and I was able to dodge some of the specifics...for a while.

mommy laid an eggBut I didn't wimp out completely. I bought a very, um, eye-opening book (which we still have) called Mommy Laid an Egg which provides silly cartoon images of a mommy and daddy basically going at it and explained to my kids that this is the more traditional method of baby creation. They both studied these illustrations pretty carefully, each in their turn, but never asked a whole lot of questions. Anything they did ask, I attempted to answer in a casual yet matter-of-fact manner.

As Laura and Joe got older (they are 12 and nine now), it seemed like a good idea to provide some more extensive education on this topic. We are really glad that the church we belong to (the UUFF of Fredericksburg) offers very (some might say VERY!) comprehensive sex education courses to the kids. These classes go by the cute acronym of OWL (which stands for Our Whole Lives). Attending these evening sessions is optional, of course, but they seem to be very popular with our congregation's families. Kids we never see at services show up for OWL (ok, we aren't there every Sunday either, so we may just be missing each other!)

When Laura was in fourth grade, we registered her for the 4th-6th grade OWL session. The trained teachers covered topics including values and sexuality, communication and decision making. When she was in sixth grade, we signed her up for the middle school class, which ranged from 6th-9th grade. I have to admit, I felt some trepidation about this large age range from the start, especially after a preview of some of the material. They were showing slides of that? And THAT?

In theory, I could get behind the idea of these slides: to show a variety of body types and ages in a variety of sexual positions without glamorizing any of it. These were pencil sketches of sometimes older, sometimes larger individuals. There was no photo shopping or hot bods present in these illustrations! Again, I could see the point of being introduced to sexual images in this way. It certainly demystified things and, if anyone tries to shock an OWL graduate with a standard porn image via cell phone, the idea is that the grad will be like, "So?" OWL does not hold back, the philosophy being that it is better to learn the facts of life in a straight forward and factual way, presented by trusted adults than through web searches and hushed chats with friends.

So I fretted and debated the pros and cons but finally decided to sign Laura up; the class wasn't going to be offered again for at least two years. If we waited, she'd be on the old side for it and I decided that I'd rather have her exposed to this information in a safe setting than stumbling upon it via the Internet or being shown by a friend. She was game for it (I never would have signed her up without her agreeing.)
However. She ended up quitting about ¾ of the way through the approximately 10-week class. She claimed that it was "boring" and that she did not care for the teacher. I tried to get more out of her. Was it scary? Was it too intense? Was she uncomfortable? Did something happen? But she's a taciturn girl at times and would never stray beyond her stated reasons for wanting to stop. However, we do plan to sign Joe up for elementary class the next time that it is offered, as that one was a very positive experience for Laura.

In looking back over this post, I guess my advice, not that we've done everything perfectly (far from it!) is to start "the conversation" early. Make it pretty basic at first and follow your child's lead into new topics and questions. That's what my husband and I have tried to do, and continue to try to do, even if we are red-faced some of the time!

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Birds, Bees, and Autism Oh MY!

charting-courseEventually every kid will start having questions about sex, or they will reach an age that "the talk" is inevitable. For us it was slightly trickier. You see my son Roger (15) and daughter Lucy (10) are both autistic. The normal stork stories or euphemisms are not going to fly. For us, just the facts are the best approach. The birds and the bees involves so much more than just where babies come from.

I got lucky with this one. A couple years ago we were invited by Children's Hospital to take part in a study that was being conducted by one of their partners. The study was looking at a drug and sex education program for youth with autism. Yay! I got some guidance on how to proceed with the subject. Let's face it I have a teenager on my hands; the subject has to be addressed and needs to include more than just where babies come from.

When Roger was little it was easy and cute. Seriously, he thought girl babies were pooped out and boys were cut out. Go figure. Really my kids never really cared how babies got in there or how they got out. They just wanted a sibling. Lucy still wants a sister and that is not going to happen. No way no how.

Back to the program.

The program was very easy to follow. Part of it was a computer game where your child goes into different rooms and each room has a different topic and a quiz at the end. In our group we only had the computer program and our focus was drugs only. After we completed the program the company sent me the whole curriculum , including sex education.

Now I know it may seem odd to be using a curriculum to talk about sex and drugs with your own kids. Not everyone will use this approach. For our family it worked better than trying to just sit down and talk. We could set aside a little bit of time a day and break the subject down into smaller sections rather than one long talk. In our house the birds and the bees is an ongoing subject not just a have a talk and be done.
For Roger and Lucy it is just what we needed. The book they sent me is separated in sections. Each section takes on a different subject such as relationships, sexual activity, sexual health, and sexual feelings to name a few. Each section has talking points and short worksheets to help. There is also the online game that goes with the program so the kids get a more interactive approach to the subject. Honestly I will probably also use this with my youngest Porkchop (8) who is not on the spectrum.

We have also given the kids different books they can read at their pace and comfort. For Lucy we use The American Girls book The Care and Keeping of You. Roger we use Making Sense of Sex: A Forthright Guide to Puberty, Sex and Relationships for People with Asperger's Syndrome by: Attwood . Both books are straight forward with presenting the information.

There are so many resources you can find online when it comes to dealing with the birds and bees as well as autism. Different programs, social stories, books, and online forums where you can talk with other autism parents on how to approach the subject. I have a section of resources on my No Guile site

At the end of the day how you approach the subject is up to you. You know your child best. You know what approach will work and what information they can process.

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Therapies and Why Quitting Was Best For Us

Disclaimer: This is about our family and what worked for us. Quitting may not be the best option for all.

I am mom to three kids and stepmom to one. Roger, Lucy, and Porkchop. Roger is 15, and is the main topic of this blog post. He was diagnosed with autism at 11. He loves books, video games, and technology.
Lucy is 10. She also is autistic. When she was a toddler, it was classified as classic autism though today they say she has more of an Asperger's type. She loves My Little Pony, reading, and school. Porkchop is 8. He got his nickname from a cousin years ago and it stuck. He loves skateboards, bikes, sports of any kind. He is all boy and did I mention a mild hemophiliac as well? We live in Stafford and our family also includes Dad, two dogs, ducks, and fish.

Between my husband and me we have four kids, ages 15, 12, 10, and 8.* Three boys and one girl, so we girls are outnumbered. We deal with autism, executive functioning disorder, a movement disorder, speech issues, hemophilia, anxiety, and the list goes on.

What is the first thing any parent gets when their child is diagnosed with autism? A list of recommended therapies. Most of which have unfamiliar names and unclear purposes. Look at the list: between ABA, OT, ST, PT, CBT, etc. therapy can become a full time job. Did I mention you have to learn a bunch of new acronyms?

Our case was no different. When Roger (now 15) was diagnosed at 11, I was handed a list of suggested therapies. The list included occupational therapy, speech therapy, applied behavioral analysis, cognitive behavioral therapy, social skills and a psychologist. Here the thing about all of these: the wait lists are huge. Some of the lists were almost two years out. Just calling becomes a job. Most of the places will either say they have no room or they just won't call you back. If you do get in, their mindset may not be the same as yours.

I called a couple different companies for ABA; three months later one of them got back to me and sent someone to our home to do intake for Roger. We had problems from the start. First off, they normally only dealt with small children not a 12 year old. Second everything was scheduled during school hours; this was more for their convenience than mine. This also meant he missed a day of school to do the intake.

The lady came out and spent about two hours with us. They asked a bunch of questions, observed, all that stuff. In the end her plan was to stop behaviors she saw as annoying, where my idea was to work on more practical issues that I was told they could help with. I don't care that he taps his foot or paces, that's no big deal. He needed help organizing; everything from his room, schoolwork, even showering. This was not her plan. Before any of that could happen he would need a minimum of 20 a week ABA. I didn't feel that was appropriate.

How was he going to participate in after-school activities? How was he going to just chill out and not have to work all the time? If we followed her plan, he would go to school then come home and work with ABA until dinner time then go to bed. What kind of life would that be? After the intake we never saw them again. They did call a couple of times but unless they were willing to help where we needed help, and reduce the minimum time, we were not interested. ABA was out the door before it even began.

Social skills groups, wow don't even get me started, what a joke! I called and spoke to a few. Almost all of them were full, plus the cost for a month (which was just a few hours on Saturdays) was upwards of $800+. When I asked what they in the group, did the response was always, "We facilitate social skills." What does that mean? "Well, we give them scripts in a group setting, play games, etc." So the conversation is forced? "No, it is facilitated by an adult who is trained." That still sounded forced to me.

The more they talked, the more turned off I got. A friend had also told me of a club in town that had lots of activities for kids in a no-pressure environment; they could pick and choose what they wanted to do and it was only $50 a year. I should mention this was not a social skills group, they never claimed to be any sort of therapy. However, the beauty in this system is that anytime you get people together who have similar interests or enjoy the same activities, they do interact with each other! If we hadn't moved to a different county we would still be part of this group because it was fun. It may just be my opinion, but the best social skills training for my son has not come from a professional but rather just from being a kid. The best way to learn is to get out in the world and experience it. With more experience you learn what is expected and how to act. This goes for all of us.

We did speech for a year for Roger and three years for Lucy. Lucy did not talk until she was five and yes, I do think the speech therapy she received through the school greatly helped her. Roger has a different speech pattern. No one is quite sure how to explain it but he can be understood. The speech therapist worked with him for a while and really nothing changed. After a year of speech therapy we sat down with the speech therapist we all (Roger, the speech language pathologist and I) decided that it was time to end speech. He still does receive some speech twice a month at school but all after-school private support has ended. It was not changing anything, just using up time.

Next on the list: occupational therapy (OT); we did try this. He has some handwriting difficulties that his occupational therapist was willing to work with. While we had OT for a year, the handwriting was thrown to the side about a month in. We all realized nothing was going to change and it was just stressing him out. He can use a computer, so it wasn't worth the stress to force it. They moved on and did some strengthening, balance, and fine motor things instead. After a year we stopped. Really all we were doing was spending time in offices taking away from activities that he was interested in.

We never did find a psychologist that could do CBT with him for anxiety. Once you say autism they all back away. Since we moved we do not have the severe anxiety anymore. I know for many that is not an option but for us it was. We needed to move and it just happened to have a good benefit for our son.

It's been three years since we quit all therapy. If I had to do it over again yes I would make the same decision. Knowing what I know now we probably wouldn't have gone through all the stress of finding therapists, doing the various intakes, and spending so much time in offices that did not help. The kids "social skills groups" are now after-school activities. Nothing is forced. Lucy has found yoga helps her anxiety. (More about that later).

In the time since we have moved and ended all the therapies, Roger's meltdowns have lessened. He is no longer stressed by therapy. He has a few friends in the neighborhood from school, and he participates in activities. I truly believe that just being kid and participating in activities he likes such as baseball and multiple after-school clubs have done more for Roger than any therapy I could have paid for. Yes we have worked to change some behaviors but really that is part of growing up. All kids have behaviors that need to be changed but there is a difference between changing a behavior and trying to change a person and I for one cannot stand behind any therapy where the entire goal is to change a person.

*The 12-year old does not wish to be mentioned in my blog posts.

 

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Cheer, Goodwill, and Embarrassments: Ms. CrankyPants' Holiday Letter!

While digging through some old files, we came upon this "Ghost of Christmas Past" and wanted to share it with you again. After all, a good laugh never goes out of style, right?! 

Happy holidays, everyone! It's been quite a year! There have been some highlights, and many, MANY embarrassing lowlights, most of which I've shared with you. If you need a refresher, just click here or here. Oh, hell, click on any post in my blog; it's nearly all embarrassing.

Everyone knows that the very BEST holiday letters are all about bragging highlights, so let's get started!

  • I'll just get the biggie out of the way first: I now have 10 followers! It's taken close to a year, but 10 new people actually like me! Or at least, the Ms. CrankyPants version of me. For all you know, I could be a colossal ASS whom you'd hate in real life. (After all, I just used the word "whom.")
Thanks, 10 followers!

 

  • I haven't had an MS relapse in...ages. Is it the Copaxone? The Swank Diet? Is it because I don't really have MS at all but some other horrible disease? Or, could it be that strange "agreement" I made with the mysterious silver-tongued chap with the red tail and horns who showed up that one night with a contract? Dunno. Whatever. I've been feeling good. (Note: I've just officially jinxed myself.) 
He LOOKED friendly enough...

 

  • Our fantastically wonderful family is growing! The cat-adoption stork brought us a little bundle of joy (LBOJ) named Pepper Anne! 
 
Pepper Anne, in one of her 4,872,810 adorable poses.
    • Our existing cats hate aren't especially fond of are slowly getting used to our LBOJ!
    Capt. Nap: "I can't even look at her. She's HIDEOUS!"

     

    • In other exciting feline news, Squeaky the Cat just graduated Magna Cat Laude from Big Jerk Cat University and has received her Ph.D. in Cat-Assery. She is so skilled! She can now hiss/growl at Pepper Anne and Capt. Nap WHILE guarding her toys, food, and the communal water bowl. Oh, and also all four litter boxes. She's so talented! We are so, so proud. That tuition money was well spent indeed. 
    "Who the hell are you calling a jerk? Cover my head at once, minion!"

     

    • Capt. Nap is also doing really well! He hasn't had an explosive vomiting session since September. Plus, remember his adorable POO PAWS that so delighted me back in January? He's taught l'il sis Pepper Anne how to actually walk in her poo before burying it. What a good big brother! Now we have two cats with the occasional poo paw. We couldn't be happier! (By the way, who wants to come over and lie on our carpet? First come, first served, friends. There's only so much carpet to go around!)
    I call this section of carpet. (Sorry, homeowners get first pick.)

     

    • Husband is continuing to support me in my efforts to stave off disability via the Swank Diet! He's a wonderful cook! But, really, how can you go wrong with products like TOFURKEY sausage?
    OOPS! Wrong picture.

     

    You can see why I got confused.

     

    • I may have big boobs! Yes, friends, according to a highly trained expert at a local bra shop, I have spent most of my adult life wearing a way-too-tiny bra size. This was some of the best news in all of 2013 for the fabulous CrankyPants family!  

     

    • Back to our kitty cats! They have really impressed us this year by scorning every single product we've introduced in an attempt to toilet train them. Stubborn little kitties! I do love a cat with his or her own personality! Oh, and not to worry: they've promised to pay us back the $3,176 we spent on ridiculous devices designed to make scooping their litter boxes a task of the past. 
    "Kwit the litter? NEVER!"

     

    • It sure was a great Halloween this year! We managed to significantly reduce the number of trick-or-treaters harassing us! No, it wasn't the unwrapped hard candies or the miniature boxes of ancient raisins we'd been passing out. We suspect it was because our neighbors saw my husband mowing the yard in the snow! "Why, those cat-loving, kid-less people are NUTS!" we think they might have said on the neighborhood shared social media platform that we imagine exists and to which we've not been invited. "I wouldn't send MY kids there this Halloween." Mission accomplished! 
    This isn't my husband. I've been forbidden to use that picture. This is the mayor of someplace in Iowa. But you get the idea. And in his defense, my husband was not wearing shorts. 

     

    • Thanksgiving 2013 was a tremendous success! No four-legged attendees vomited or did a poo anywhere! Pepper Anne jumped on the dining room table and lurched toward the turkey only once! (Maybe twice.) (Okay, fine, thrice.) (And, yes, I just said "thrice.")
    We look forward to the new year, new embarrassments, and, ideally, new carpet. May you and yours have a very happy holiday season! 

     

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    Pouches' Community Corner

    Bikers Against Child Abuse, Inc. (BACA) exists to create a safer environment for abused children by empowering children to not feel afraid of their world. Imagine how an abused child feels when a group of large bikers rides up to their house, inducts them into their club and then escorts them to court to testify against their abuser.

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