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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

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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    'Til We Meet Again

    It's been over a year since my family and I attended the funeral of my children's beloved great aunt Anna. She was a kind and loving woman and was clearly very dear to you and your congregation, just as she was to our family.

    My kids were six and eight at the time of Aunt Anna's death. Just old enough to "get" it: Aunt Anna was not coming back. She was gone. We'd lost a couple of pets in the past so they had a slight grasp of death and its finality, but this was the first relative that they'd lost. To put it simply, they were bereft. Prior to the funeral, their dad and I talked to them about God and Heaven, and even though none of us in our house is 100% sure what happens after we die, they were comforted at the idea that she was at peace. In a better place, if you will.

    I hoped that your sermon would offer comfort, closure, maybe a few smiles through the tears. I hoped that the kids would gain solace from the service and from your words. Unfortunately, this is not what happened.

    Read more: 'Til We Meet Again

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    Engineering for Kids

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    In Fredericksburg, Engineering for Kids provides a suite of programs and events for kids aged 4-14. “Subjects range from Electronic Game Design to Aerospace Engineering, Robotics to earth-friendly Environmental and Marine Engineering. Engineering For Kids is devoted to one sole purpose: to inspire the next generation of engineers.” 

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