The One About The Fat Guy In The Suit

In the strange world we live in, we've never had the question, "Is Santa real?", come up.  Both of my minions have just taken it as certain fact that a rotund man in a red suit delivers one amazing present, to each person around the globe, in one night.  Seems legit, right?
The minions are 11 and 14 and thanks to NORAD and animated Christmas shows, they still have no doubts that:

1. Santa is real
2. He needs some of my cookies
3. He's bringing games for the Wii

Seems Legit...

I was hoping by now they both would have figured out that Santa couldn't be real.  Then again, minion #2 is holding out for a pet chupacabra or bigfoot, so perhaps I shouldn't be surprised.  What it boils down to though is this.  We don't lie to the minions.  I've had to explain everything from incest (thanks NatGeo Mummy specials) to complex medical procedures and expectations of pain levels, but we don't lie.  So why do we pick things like this to be untruthful about?  

I've thought long and hard about this, and I think the answer is simple.  There is some magic that revolves around this time of year no matter what religion you follow.  Even if you follow one of the religions that doesn't celebrate the holiday or are atheist, chances are your spirit of giving or being with family is greater, and that's it's own type of magic.  Who wants to end that?  Yeah, I really don't either.

What we will be doing is telling them in a way that involves them being part of the Christmas magic.  I hope that in years to come, it also helps us come together more as a family as it has this year and makes it less about giving things to someone just because it's what's you've always done at this time of year.

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Everyday I'm Juggling

When you have kids, the saying is each day is something new.  I've found that to ring true from newborn to teenager.  Right now, our something new is getting used to CyberSchool.

The second minion is adapting a little faster.  His time management isn't great yet, but that's a learned skill and something we'll be working on through this week.  He only has to 'show up' for a few classes each day, and the rest of the time is his, to go at his pace, and accomplish things in whatever order he chooses.  Sometimes he chooses to daydream for an hour or so through history, so school can drag on a long time if he's not careful.

Minion #1 is a whole other scenario.  From what we can tell, he's not had to really work at school.  He's had an aide to do a lot of, as it seems, everything for him.  Right now we're working on thinking for ourselves instead of waiting, sometimes hours, for someone else to prompt him with ideas and thoughts.  I think if he can figure out how to play Skyward Sword and think his way through other video games, he can think his way through school work too.  Probably without someone to do it for him.  I know - shocking, isn't it?

This morning I got out my kitchen timer and dusted it off.  I haven't used it much since the days of potty training, but I figured we'd give it a try.  Granted, it will probably have the side effect of making them both need to run to the potty each time it dings, but they'll have to suffer until they learn to manage their time a bit better.

Normally by this time of the morning, I'm not sitting around with wet hair still, proctoring lessons.  I'm usually happily settled in my office chair, sipping some coffee and getting my day underway.  The last few weeks, I've been dealing with school(s), still working when and where I can and trying to keep up with a renovation, house work, the laundry monster and the usual other things that go on in every day lives.  Adding CyberSchool into an already busy schedule has been hard, I won't lie.  I can also say that's it's really been worth it to see the minions get back to enjoying school and enjoying learning.

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The One About Toe Walkers

Who knew a fashion post could be (in part) about autism?  Bet you didn't!  Well, my lovelies, today it is.  It's also about one of my favorite things, SHOES!

Autism has some of the craziest signs for a disorder, ever.  One of them happens to be toe walking, which, if you have a toddler is a common thing.  Toddlers will toe walk, slap their feet down flat or roll their foot like an adult as they learn to get themselves ambulatory.  For some people with autism, it's a learned skill to not walk on their toes.  Minion #1 is one of those people.  We still work on that skill, especially if he's getting tired.  As with everything else, as your  mind and body tire, the brain relaxes and things you have to think about doing go to the wayside.

As you can also imagine, it takes a toll on his shoes.  The wear patterns are different on his long toed, narrow feet.  The treads on the fronts and sides are worn down long before the rest of the shoe.  When he was younger, due to the shuffling and scuffing, the treads would come away from the shoe as well.  We tried a number of things to address the walking issues he had.  We went from constant reminders, showing him again and again how we walked to letting him go barefoot.  Nothing really worked.  Until flip flops.  Turns out toe walking in those makes you trip over your own feet.  After a summer or so of that, the issue resolved itself, minus a few small reminders now and then when he's tired.

We women also do a good bit of toe walking if we wear heels a lot.  It's a bit different in that the foot is forced into that position, but it does the same things.  There are a number of issues that can crop up from wearing heels, from bunions to stress fractures of the foot.  So, if you love your heels like I do, here are a few tips to keep your feet feeling awesome.

* When you buy shoes, make sure they fit your foot.  Not all shoes from all makers in your size will.
Clarks are a great shoe.  They don't fit my foot though.  My go to heels are from Aldo and Easy Spirit for flats.  I don't even feel them on my foot.

* Pad your shoes so you're always comfortable.  They make inserts for just that reason.
There are inserts for the balls of your feet, sides, heels...etc.

* Own more than two pair of shoes, guys.
If you wear the same shoes over and over before they have a chance to dry out, you'll end up with some rank smelling shoes from the bacteria that's breeding in there.  Freezing them for longer than 24 hours will kill the bacteria.

* Pedicures - do them yourself if you like.  It keeps the blisters, calluses and cracked feet to a bare minimum.

* If you're not great with heels, but still want to wear them, try a lower wide heel, or a wedge.  There are plenty of styles out there that don't look like your grandmas shoes.


Also, here is today's outfit

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The One About Science Class

Last Thursday was back to school night at the middle school.  Minion #1 who attends this school is in a special autism class for some of his day, and back to school night is usually a great way to introduce ourselves to his teachers, get their impressions and give them ideas if they are having trouble teaching him.  Usually, is the word though we want to stress here, because this year, as we've found out teaching isn't really what they are doing.  For those of you just tuning in, feel free to read a few other posts about our local school district and how we've had to file complaints for not following the IEP as well as contact the Attorney General's office to report them for medicaid fraud.

After speaking to his history teacher, it was his opinion that he simply change all the tests to things that he could pass without really having to work at understanding the material.  If he could just know names and dates, and that was good enough, and the best part is that he would gets A's too!  The science teacher informed us that he was only rehashing material from the two previous years, and that would be a struggle for him, since he wasn't sure how you could rehash the material and make it seem new.  Oh, and science class, wouldn't really be 'class' it was really more an online thing and they would do a project or something too.

I'm not entirely sure, but I think the King's brain may have imploded at that point.  The incredulous looks he was giving me coupled with the opening and closing of his mouth, rather like a stunned trout, while trying to form angry words was giving it away.  Whatever, it was time to go home.

We found out a number of other things that evening as well.  One was that the autism program that the school started is failing miserably and won't be continued at the high school level.  Another was that there still aren't any other students that are high functioning autistics, so minion #1's getting pretty far behind in his own studies due to the other kids not progressing.  My personal favorite though was that the school is simply neglecting to provide speech services this year, contrary to the IEP and the settlement reached (not monetary)  with the department of ed. over the summer.  So, I'll have to start filing complaints, again.

As parents, I think we all find faults with the public school system.  From teachers that care too little to bad food that's offered in the cafeterias at lunch time and all things between.  At this point though, we've reached our limits of what's acceptable.  We're looking into cyber school.  Which, while still public school it gives us the opportunity to be more involved and interact with our minions throughout the day while not being responsible for developing a curriculum.  With any luck this will allow them to achieve their potential instead of just whatever the school thinks they need to squeak by.

Has anyone else run into this sort of thing?  What did you decide to do?
If any of you have decided on cyber school what has your experience been like?

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Time4Learning - Final Opinion

We're to our final few days of a month long free trial from Time4Learning.  I'd like to thank them for the opportunity to review their product and see how it really works before committing to it.
I learned a number of things this month from doing this.  One is that my youngest minion needs to be prodded, a lot, about his school work.  Some of that is the ADHD kicking in, some of it is that it's not fun for him without a specific purpose.  The older one though has really taken a liking to it, even to just go through the modules.  As a parent you can log in and see what your kids are doing, how long they spent on topics and what they are scoring on quizzes.

Screen capture of a history lesson - once on his own, once with mom.

Last week, the older minion had a dentist appointment in the morning, which when you have to take meds an hour before becomes a bit more of a chore than just picking up your minion and taking them. So he missed history that morning, but brought the homework back from class.  Lucky for us, the homework didn't match anything in the book and he was at a loss with what to do.

Even though minion #1 is autistic, we do not do his homework for him.  I'm not in the 8th grade, so why should I?  What we did find what that there was a nice little module about pre civil war USA in Time4Learning that matched up what they were studying that day.  We had to run through the material twice,(once on his own, I looked at the quiz, saw he wasn't getting the material, and then again with me) and do the quiz but he did learn it and was then able to do the homework on his own and understand it.  That in itself is a valuable tool and resource.  I couldn't be happier with that.  It also tells me that anytime he needs a little reinforcement, Time4Learning will definitely help.

We will definitely be keeping Time4Learning around as a resource and secondary learning tool.  As far as I'm concerned it's invaluable with an autistic 8th Grader.  As to minion #2, he thinks someday he'd rather be out of the classroom environment to learn.  He's not a big fan of the other kids (they really are bratty, mean, and generally bad mannered, so it's unsurprising) and chooses to not play with them or have much to do with them.  I can imagine it's a lonely environment for him anyway.  As weather gets cooler and we stay inside more, I'll be devoting more of my time to their studies (and my own if I'm lucky) so we'll see how things go.  Who knows, I may end up with homeschoolers yet!

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Time 4 Learning - review part 2

Things have been crazy around here the last few weeks, so blog posts have been sporadic at best.  One thing that hasn't though has been the fascination with Time 4 Learning.
The youngest has been at it sporadicly the oldest more frequently, without us really asking them to.  As school is starting up once again we'll be reviewing the syllabus' from the school and filling in with Time 4 Learning for extra review and bolstering the studies they have.

Through this week we'll be working through some of the material with them to see how much it's being retained and see how the quizzes go.

Next week I'll be asking the boys to write a little something about the process themselves.  We'll see what they have to say about it and if they're going to stick with it.  If any of you have questions for them, just et me know.  I'll have the minions do their best to answer them.

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The One About Standardized Tests and Sanity or Lack Thereof.

This post comes with a disclaimer:
*Time4Learning has invited me to try their online curriculum for 30 days in exchange for an honest review. My opinion will be entirely my own, so come back and read about my experiences. Visit them for information about lesson plans, homeschool portfolios or writing your own curriculum review.*

I don't know how the school system is where you are, but here in Pennsyltucky it's the same thing each year.  The kids go back to school before Labor Day, have a review of last year that lasts until about Christmas, then everything they learn from there on out is to do the best they can for PSSA testing.  That's the standardized test that determines how much funding the schools get.  The school even has little reviews and websites set up so the kids can 'study' for this test that has zero impact on their grades.  It makes me a little crazy how the schools think this is acceptable.

I understand that the school wants the kids to do as well as they can so they stay adequately funded.  But, as a parent, I start to wonder if the school is serving the needs of the students, or itself more.  I also look at the other nations on this planet and see how far behind we are with education.  It's truly sad that in some subjects we are lower than even developing nations.

I started doing some research on different curriculum and what can be used for after school to bolster what is being taught as well as in the summers so they don't forget things they've learned.  I also wanted something to give them the option of moving ahead in some subjects but not others.  I had a fairly tall list and what I found was that time4learning filled them all.

We'll be trying it out for a month and I'll be posting a quick review each week, then a final review from my boys to see what they think of it as well.  With one child being autistic it should be interesting to see how it goes and if they can stay focused on it, or like it enough to want to do it.

If you're using something else with your kids, let me know!  Right now we're just starting to explore our options.

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The One About Diseases and Taxes.

Last week, I spend a few hours with a friend of mine who has been diagnosed with celiac disease.  We chatted about some of the crazy things that happen with auto-immune disorders, food intolerances and allergies, and walked through a grocery store to see some of the things that I use frequently, and talk about what to buy where.

She asked about the tax deduction you can get for specialty foods.  I had nearly forgotten about it, because when I ran the numbers it just didn't work out for us.  The rules for the tax deduction are to have a letter of diagnosis from your doc, and have all your receipts for your gluten free purchases.  Which seems easy enough, but, then the hard part starts.  You also have to know the price for the non-gf equivalent for each food you've purchased.  You can only claim the difference.  Add up your difference for the year, and if that number exceeds 7.5% of your adjusted income you can claim it, IF none of your insurance reimbursements cover it.  Here is a starter worksheet if you want to see how to set up a tracking system. 

I mentioned insurance reimbursements earlier.  What that means, is if you have an insurance spending plan, you may be able to use that money to cover the food expenses because it's medically necessary for you to eat that way.  Double check your plan coverage, or ask HR to find out for you.  Also a thought for any of you that have the option to take a plan like that.  It may work far more to your advantage than the tax deduction, especially if you have your taxes set up properly to start with (not giving the government an interest free loan out of the goodness of your heart all year long).

For any of you who are new Celiacs, or have wheat or gluten intolerances, I'm going to end this article with places wheat hides.  After talking with my friend the other day, she showed me how she was carrying about granola bars with her for snacks, so she didn't contaminate herself.  Unfortunately the bars she had weren't GF.  So here's a quick list!  But remember if it's labeled GF, you're fine, this is only for things not specifically labeled GF.

Oats 

Anything that says it's processed in a facility that also processes wheat.

Anything that's processed

Anything labeled with stabilizer, binders, fillers, natural flavor, vegetable gums, and mono & diglycerides

Meat

Frosting or Icing

Cool Whip

Do not do this either!

Soy Sauce

Malted Anything

Anything that's been deep fried.

Communion wafers

Ice Cream

Alcohol - depending on the distillation process 

Red wine (ask about the barrels, some are sealed with wheat paste)

Imitation meats (beware of sushi)

Medications (talk to your pharmacist, they can check for you)

Soaps, shampoos, toothpaste, cosmetics, lotions, paper products, sunscreen

Stickers, envelopes

Other appliances in the kitchen.

Toys.  Seriously, grubby little fingers drag crumbs everywhere.

Anything that comes from mold, cheeses, etc.
Bakeries, Donut Shops, etc.  (Dunkin Donuts posts a sign on their doors now, don't even get the coffee at the store.  It's not GF.  The bagged beans though are safe.)
Pet Food
Saliva

And of course, you.  Yep, you'll contaminate yourself a few times too.

Stayed tuned next week for the One About Baby Jeebus and the Zombie Apocalypse.

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The One About the Hamburger that Wasn't

We've been childless for more than a week.  It's been unnaturally quiet, clean and food isn't randomly disappearing at disturbing rates.  I'm also a little lost.  No one has been in to wake me in the mornings.  No phone calls through the day to let me know that Minion #1 is being a pest. I can actually get things accomplished without stopping at least half a dozen times to find something or intervene in a brotherly squabble.

It's really, really nice to have had some adult time.  I got to play catch up on some housework, got a few little projects accomplished without 'help' and didn't have to listen to whining about when dinner would be ready or how it wasn't what they wanted.  Which is really one of the only things that my minions do that actually bothers me.  Yes, I dislike that they leave their dirty socks in the living room, and wet towels on the bathroom floor.  But, those are a dislike, not a that hurts me to the soul sort of thing they way the food is.

I spend a good portion of my week and days planning menus and making food that contains things that everyone likes and that won't make me sick.  It's not as easy sometimes as you'd think.  So while I do keep in mind that minion #1 has autism and lying about how good something is really is beyond him.  It does stab me a little when one or both minions refuse to eat something because it's new and they've already decided they won't eat it and won't like it.

We don't make two dinners around here.  Not anymore.  I used to.  A lot.  In fact, some nights I was making three and sometimes four dinners.  I just don't have the energy for it, and honestly it's rather silly.  So now we just have a rule.  You don't have to like it, but you do have to try it.  If you refuse, you go to bed, there is no compromise, and I'm trying to stop caring about them going to bed hungry.

I'm sure the rest of you struggle with the same sorts of things.  What rules do you have to get your minions to try new things, or just eat what you've made with minimal fuss?

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Half Tutorial, Half Rant, Half Bad at Math, but All Good in Showing You the IEP Process

This week's tutorial is for any of you parents who have a child with an IEP, It will show you how to navigate an IEP and if you have a dispute, how to do so properly and to your child's advantage.

A few of you are aware that Minion #1 has Autism, or PDD-NOS.  Those of you who weren't, well...you are now!  He has an IEP  in place with the public school system and at the review and renew this year I found a few discrepancies(that's the start of the saga).   The saga has continued into the summer, yay </sarcasm>.  In addition to filing a claim of insurance fraud with the Attorney General's office I've had to file a complaint with the PA Dept. of Education as well.




What we were up against was this:
A therapist that...

• was not competent.
• refused to communicate with us about the speech sessions.
• was fraudulently billing medicaid.
• thought it was therapy as long as she was in the room.
• was cheating a child out of 10 minutes of therapy in each session.
• was using a verbal child as a tool to give therapy to 4 other non-verbal autistic boys.

A Director of Special Education that:

• thinks it's ok to break the law as long as you don't mean it (or get caught).
• refused outright to tell any of the other parents that were involved in the fraudulent billings (20+ therapists in the end, or so we were told, no idea the number of students)
• refused to switch the therapist for another one.
• thought what the therapist was doing was ok, she just used poor language choices to 'splain it to me
• thought we would go away if she delayed and denied enough things.
• sends out legal documents she wants us to sign with incorrect names on them,  essentially voiding the document and ending a dispute.

First things first.  When your child has an IEP never go to an IEP meeting alone.  Don't put yourself at a disadvantage, especially if you're new to the process.  You are allowed to dictate who attends these meetings, if you want an advocate there, bring one. Bring ten if you want, it's your call.  They can be anyone, from your BFF to your family doc.  And by the love of all things holy, get EVERYTHING and I mean EVERYTHING in writing.

If you do not agree with any part of the IEP sign nothing other than the paper stating you were there.  No matter what anyone tells you, you don't have to do squat at the meeting other than say you were there.

Be very specific about your disagreements.  If you don't feel that the services they are offering are enough, or are enough time to be helpful, say so.  If they refuse anything additional tell them you will dispute it and have your child independently evaluated for whatever service it is.  If that evaluation doesn't match theirs you will take it to mediation.

If they are offering a service you don't think your child needs, hear them out.  But, you know your child best.  Most of these people only see your child once, for 20 minutes and that is what they are basing their evaluation on.

At the end of the IEP meeting you should either be okay with what they are offering, or have a plan in place with the IEP team to rewrite certain sections as per your child's needs.   Again, do not sign off on the IEP until it reads the way you want it to.

Once that IEP is signed you, your child and the school district are obligated to follow it, to the letter.  I'd like to believe that the world is an ideal place, but it isn't.  You should check on the IEP at least twice a year.  Drop by for a session with the therapists, if your child has an aide, observe them.  Be involved, know what is going on.  Speak with their classroom teachers.  Generally if something hinky is going on, they'll find a way to tell you.

If you get to the point of having to do what we did.  It's actually pretty easy.  In PA you report insurance fraud, or suspected cases of it to the Attorney General's Office.  You should have everything you can documented.  I can't state that enough here.  I do most of my talking with the school via email, so I have all of it, or I take copious notes while I'm on speaker phone with another person there.  Then you just submit all your documentation to the agent.

Should you have to go to mediation, or file a complaint that the IEP was not followed, here is what you do:
Get your Procedural Safeguards notice.  The school has to provide you one at the IEP by law.  In there it will tell you who to contact.  In PA it's the Department of Education.  They have a nifty form, you fill it out and send it in.  Their agents then call you and take it from there.

If you have any questions, or not sure what you're allowed under the laws and just want someone to answer a few legal questions for you there are advocacy agencies in each state to do just that.  In PA it's the Disability Rights Network   They will also help you out with finding an advocate for IEP's if you need one.

Do not feel as though you are all alone when navigating IEP's and the school system.  You're not.  You just need to know who to ask for help.

To quote Dumbledore  “Happiness can be found in the darkest of times, if one only remembers to turn on the light.”

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The One Where Autism Turned My Kid Into a House Elf

There are days around here where the autism wins.  Sometimes, it completely triumphs over the life of minion #1.  There is about as much point to trying to reason with it as there is with a newborn.  Most days it just lies in wait, searching for its opportunity to strike and really take hold.  Thankfully, those days are fewer now.  Sometimes though, it creeps in when we least expect it to and unlike most times, the results to those watching are sheer hilarity. 

Minion#1 wandered into the kitchen Friday evening as the king and I were making dinner.  I was happily carving up veggies as he was doing up the pizza crusts.  The king looks down at the minions feet for some reason and realizes he only has one sock on.  Now this isn't all that unusual, odd things like this happen often around here.  What is a bit different this time is the answer we got when the question of where that sock is was asked.

"My brother took it",  the minion proclaimed.
The king and I looked at each other, blinked once, and turned to look at the minion.  "Go get your sock back", the king directed.  "You ARE the big brother after all."

Dobby, from Harry Potter

Minion #1 disappears upstairs to retrieve the stolen sock, and minion #2 appears.  After a brief discussion about the current state of dinner and when it would be magically appearing on their plates, I asked the other minion about the thievery of the sock, and why it was taken.

With a completely straight face, he looks at us and says, "Um, it's probably better you just don't know".  Now, in most households, that answer probably wouldn't fly, but in this one, it does.  One, we probably don't want to know, but two, who can argue with that reasoning?

Minion #2 was instructed to go help the other one find his sock, and find it they did.  I'm happy to report that Connor the house elf, is now free!


While you may be thinking our parenting style is just awful, and we probably should have demanded a better answer from the secondary minion, we didn't and won't.  Conflict resolution requires a bit of finesse and practice to do well with for anyone.  It also requires people skills which are sorely lacking in most autistic people.  It takes years and years of practice for some of them just to ask a simple question or hold a conversation.  So, even though they are brothers, and minion #2 is used to dealing with him, it does take a lot to get them to work together, find an amicable solution and make up.  We just make sure it happens, the hows are up to them.

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The One About Garbage

Minion #1 is our trash collector around here.  Each Tuesday without fail he gathers up all the trash in the house for the week and puts it in the overly large toter in the garage.  He's such a fantastic garbage man he even sorts the recyclables out and puts them in the recycle bin.  The important part of that is that he's not a big kid.  Maybe the size of a small 10yr old, but he can easily do it because we just don't make that much garbage.

A few small things that we've adopted around here to cut down on the waste are:

• Making our own laundry soap from eco friendly components that come out of cardboard or paper containers that can be composted.
• Taking our own shopping bags with us everywhere. (I swear I'm going to make veggie bags too)
• Buying things second hand where we can, and it's safe to do so. 
• Buying what's needed, and not what's wanted.
• Reselling, donating, or freecycling items we are done using.
• Not buying individually packaged items, especially lunch items.  We use reusable containers as much as we can.
• We also avoid disposable cutlery and plates where we can.
• Choosing items that have less packaging to begin with or that can be recycled and not thrown away.
• Educating our children as to why we do all this.

What are a few ways you've cut down on waste?

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The One Where People Mean Well

This is probably my last post about autism during April.  I doubt it will be my last post about autism though.  There is plenty about it to rant about every day of the week, and twice on Sunday.  But, I only have just so much time in the day.
For those of you just tuning in, Minion #1 has autism.  It took forever to be diagnosed, no one wanted to talk about it when he was very young.  It was like toddler VD, if the docs just don't talk about it, it would go away.  So, thank you medical community!  In your infinite wisdom and expensive training you cost us a few years of interventional therapies.
Until the pediatricians, school personel, and psychologists put on their big girl panties and started facing up to reality, we treated the minion as though he was a regular kid (we still do).  A small, lagging behind, regular kid, with a pacemaker.  Ok, so he's not normal but he's mine, so he fits in just right around here.

Now, to the people that mean well.  I think at this point I've heard about everything to there is hear about having a child who's 'different'.  When the well meaning people of the world start down their well worn path of BS in 'helping to make me feel better about 'my situation'' I actually say in my head (or at least I think it's in my head, a few times it probably wasn't. My give a damn is frequently on holiday) "Do you really think I need to hear your opinion?"  And as they go on, "Oh, hell, you really do, fine, lay it on me, this ought to be good".

• God only gives kids like this to people that can handle them.  Trust me, this is not the case, sadly.  There are so many good special needs parents out there and just as many bad ones.
• You must have offended God with your behavior, this is your punishment.  God, if you're listening, fix the minion, hit me with a lightening bolt if you're that pissed.
• Why can't you just let the professionals decide what's best for him, and stop making waves?  Um, because he's my minion and it's wouldn't be the first time the 'professionals' were dead wrong?
• He would probably be better in an institution when he grows up.  Why?  Because he's smarter than you and you feel threatened?
• He doesn't look retarded.  Yes, because all of a sudden I know what that looks like, here's a mirror so you do too.

On the flip side of this, I recently heard a snippet from my Dad via my brother that was just awesome.  After seeing the minion with his classmates, who also have autism at a recent party, dad decided maybe we weren't being so hard on the minion and he's better off for it.  Dad's always been one of the well meaning people who thought we should just feed him what he would eat and not introduce new foods, allow him to just do the things he was interested in and not press him to explore his world more, and punishing a special needs child for not following basic social and family rules was awful.  Dad's light-bulb came on this month, and it was blue!

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Today's Journey

The journey of a thousand miles begins with a single step.  Lao-tzu.

Lao is a smart man.  Some days I think he also had an autistic child and had miles to go each day before he slept.  Yes, different poet, but it does feel that way some days.  I might have also had a mango mojito (which accounts for the poet mixture) to recover from the pre-op testing the minion went through today.  He's having an Oreo yogurt, and for newly minted 14 yr olds, that's about the same thing.
Today we arrived at Children's Hospital of Philadelphia to start the process of having the minions pacer replaced.  He has total heart block ( no natural heartbeat of his own) so he relies on the pacer day in and out.  We are averaging 7 years on each pacer now.  Now that he's older they are moving the pacer to the shoulder and replacing the leads.  The new leads will run into the heart and reside in both the atria and the ventricle instead of being outside the heart and only being attached to the ventricle. The husband and I were pleasantly surprised at how well the day went.  The minion was cool, calm and collected, minus a tear or two for a blood draw.
Because of being around him day in and day out, it's often difficult to gauge growth.  Today we saw that growth and maturity in spades.  I can only hope that tomorrow goes as well. Tomorrow he is faced with liquid versed to get him relaxed, then a mask with some gas to knock him out while they IV, and finish prepping him.  If that doesn't work, they have to IV him while awake, fighting it and generally making anyone in shouting distance regret being awake at that time of the day.
Are you a bad parent if you're willing to bribe your child with anything at your disposal to have scenario 1 happen?  I'm trying to figure out how many DS games or iTunes money for more Adele it may take.  Feel free to start the betting pool.

P.S. Check out the instagram widget for photos from today.

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The One With the Rain, Man!

Cake!

I read a great blog post last week about good moms, and how we are different. It was well written and made me think a bit about how judgmental we all can be as parents.  The main point was this: what works well in one family in their situation, may not be the best thing for another family.  I didnt realize just how extremely important that point was until someone wrote about it, and I read it.
This weekend I had to put this into practice.  In a HUGE way.
Minion #1's birthday party was held this weekend, and we invited his classmates.  For those of you just tuning in, the minion has autism, PDD-NOS for those of you who like things to be technical and full of acronyms.  His classmates also have autism in varying forms.  One parent called to say their child couldn't come because they didn't think he could do a birthday party, but two of the other classmates did come.  One came with his parents, another with his TSS and his dad.  This is the start of where being non judgmental comes into play.  It's easy to slip into the role of judge and jury when you think another parent isn't acting with the needs of their child in mind.
When you have a child with special needs, no matter what those needs are, your job as a parent doesn't really change, yes you have added responsibilities and things to deal with, but at the end of the day it's still your job to prepare your child as best as you can for the world around them.  So, I was a little shocked when one set of parents wanted to know if they needed to stay with their child when they've not met us before and their child's language skills were that of roughly a two year old.  The good news is, he was a fan of wii bowling and cake.
At the end of the day, the minion had a great birthday filled with family and friends he was happy to see, gifts he was truly excited about and I learned a few lessons:

• We are extremely lucky with the version of autism the minion has.
• Parents of special needs kids come in different varieties.
• Some are authoritative, some are permissive
• Some have additional help in the form of a TSS, some don't
• Some parent their children the way they do, because it's what's best for the rest of their family, and some parent each child in a way that's best for them.
• No matter your feelings on the matter, if the child is happy and healthy the parents are doing their best.  Not your best, and that's ok too.

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The One With the Good Guys, Bad Guys and Explosions!

Okay, there really weren't explosions, but there were Good Guys, and Bad Guys today.  This afternoon we had our IEP team meeting to try and resolve the speech therapy issues.  If you're just tuning in, you can read all about 'The Fiasco' starting here.  Long story made really short, we have the main thing we asked for, a different speech therapist to re-evaluate the minion and put together an actual section of the IEP that makes sense for the him, not the school district.

The meeting started out with us explaining our position, events up to this point, conversations the people at the meeting weren't privy to, or informed of with the director of special education, etc, and what our goals were. We would be the Good Guys in this scenario,  advocates for a child whose needs were not being met under the IEP, or by the district at large.  (Try and understand I had to let the husband talk because as I stared at the Bad Guys through my red-tinged glare all I could think is I hate you, I hate you, I hate you all, why is this so hard, and why can't you sheeple be more like lemmings and just jump off cliffs?  Grrr.)  While that mantra repeated in my head, the husband calmly and logically laid out our position to said Bad Guys.  It went something something like this, 'I'mma let you finish, but first I'm gonna tell you how you're wrong'.  

We laid out a clear picture of the therapist making sure the district and only the districts interests were in mind when deciding on therapy, and trapped her into verbally proving it.
The minion's regular classroom teacher was there as well, and nearly laughing at the sheer silliness of most of it.  The poor man had to catch himself from snorting in laughter as the speech therapist waffled through her explanations and I had to tell her to make up her mind.
In the end, the only thing that really matters is that the minion is getting the services he needs, re-evaluated by someone who we hope is less of an idiot, and his interests are being looked after by people who are always on his side.  Now, I'm going to see if I can find me a white hat to ride off into this weekend's sunset with.

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Autism Awareness Month Begins Today - No Foolin'

He is not mentally retarded!  I don't know how many times I said that in the seven years it took to get an autism diagnosis, or how many times I added on that whoever was evaluating him was mentally challenged.
I knew Connor was smart.  He was reading at about 18 months, when he taught himself.  He could easily follow multi-step instructions before he should have been able to.  But, and there is always a but, he had a few really crazy quirks.  As a baby, he had to be in motion.  All The Time. We bought a battery powered baby swing and a few sets of rechargeable batteries, just to withstand the first year.  He wanted some sort of stimulation, all the time.  It was exhausting.
Most kids follow this nice pattern of learning.  Connor didn't, he was all over the place.  He could do puzzles before he was a year old, but was nearly two before I heard him say mama.  He mastered sign language before he could use a spoon.  Potty training?  Forget it.  It wasn't on his radar until he was 4.  He wouldn't tolerate certain noises, hates fluorescent lights, some food would make him gag or vomit, lightening storms are still cause for alarm.  No matter who I took him to, I got one of two answers.  He's fine, he'll grow out of that or you will probably have to institutionalize him when he's older, he's just mentally retarded.

Show your support and understanding
Wear blue, or head to Home Depot and pick up
some blue light bulbs or a lantern

It's no wonder it took me 7 years,  3 pediatric practices, 2 Psychologists and having him get thrown out of 1 school (because he refused to go near a guy with a weed whacker - don't ask) to actually have someone say - 'Yup, that's autism'.  
Having a child with autism is not like having a child with diabetes.  There is no guide book, no, do this, stick to it and 99% of the time everything is well managed.  Autism is more like fishing your kid out of the dreaded ball pit at Chuck E Cheese.  You don't know what's on or under any of those balls, and you really, really don't want to, and every time you go there, it's something different.  The autism your kid gets is different from the autism another kid gets.  It's some twisted version of neural development roulette.  We got speech delays, lack of eye contact, sensitivity to light and noise, need for stimulation (via hand flapping, mostly), compulsive behavior, ritualistic behavior, social impairment...blah, blah, blah.  What does all that mean?
It means, he learns differently, we teach and talk differently.  He needs a schedule to live and function day to day in, so we make one.  Just like all other nearly 14 year olds, he has chores, homework, responsibilities and isn't fond of showers, but they're on the schedule and there are repercussions for not following the schedule, so he does it.  I carry ear plugs in my purse if we go somewhere that might have loud noises, and sunglasses and hats are a must.  We practice social behavior, we remind him to use his words, look at people when he talks to them, sit on your hands if feel the need to wave them around.  We phrase things differently and have to ask questions a number of ways sometimes until they can be understood and or answered.  Each day brings some new challenge, and sometimes a victory or two as well.  
If you've gotten this far, and don't have an autistic child, all I can say is thank you for caring enough to learn a bit more.  Most people don't care unless a subject affects them directly.  The truth is, it probably does, they just don't know it.  In the U.S. alone, 1 in 88 children has autism.  1 in 54 are the stats for boys.  The people who have autism aren't mentally deficient, they just interact with the world differently.  
I hope you take the time this month, to see the world a bit differently.  Let yourself imagine what it would be like if you could only interact with your loved ones through 20 different phrases, or had to relate everything you learn to pokemon characters, because that's what you're fixated on right now.  The next time you're at the grocery store imagine how hard it would be to comparison shop because the lights are too bright (think hangover bright, and pulsing), four other people's conversations are disrupting your concentration and the store has changed which aisle and shelf the only chips you eat are kept.  You can't move on to the next item on the list because you must do the list in order and if you can't, you have to start over.

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The One With the TPS Reports

Nothing important happened today in IEP land.  The husband stopped by the district office to pick up the Medicaid billing report I asked for more than a week ago.  I chuckled as he told me the story of how the director of special education came out to talk to him, and she was very surprised that he came to pick them up, seeing as how we were to get them by the end of the week.  (We had a power outage last night, so there was a missed bus this morning, and he was in the area) He informed her that since she said she had pulled all the paperwork and reviewed it all, it should be ready to go.  So, he says, just have your secretary make me those copies, I'll wait and casually finds himself a chair.  A few minutes later she comes back with the paperwork we ask for.  A whole half page report.

Um, Yeah...

So, we now have the billings that show she was over billing for the services received.  It also confirms that the minion isn't getting the amount of services he's due according to the IEP.  He's been shorted by 10 minutes each session.

I guess the upside to this is each time I've glanced at the report, all I can think of is: I didn't get a cover sheet on my TPS report.  We put cover sheets on all our TPS reports now.  Maybe it's coming on Saturday?

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The One About Choices & Decisions.

Have you ever found yourself at a loss for words?  Believe it or not, probably not with the amount of ranting I've been doing, I really am in some ways.  I'm completely bewildered at the attitude and words of the Director of Special Education of a school district.  Insurance fraud is okay if you don't mean it.  She didn't understand how we could not want to be serviced by the provider that committed the fraud.  She couldn't understand why we would want to report the district for fraud.

Minions 1&2 - the most important
things in my world.

Now, if you don't mind slipping into my shoes for a few minutes (yes, I'll even let you slip into a pair of my favorites) I'd like to ask you a few questions.  How would you react on finding out you had a service provider for your child that was defrauding you?  In our case both with the Medicaid, and not following the IEP, so he wasn't receiving the services to which he was legally entitled to.  Would you be comfortable with a provider who thought simply being in the room was even to satisfy an IEP?  Would you be comfortable with a provider who refused to add things to an IEP, claiming it couldn't be done?  What about a provider that knew your child's therapy was not in his best interest, but did it anyway so the provider could use him as a teaching tool for the other children she was also providing therapy for?

Think about all of that for just a bit.  Think about your child.  How would you want your child to be treated?  How would you handle the situation?

We have another IEP meeting on Wednesday, in the afternoon.  His teacher, the speech provider and her supervisor are scheduled to be at this meeting.  The husband and I have discussed all this, and more that I haven't bored you with.  Let me assure you, I've divulged the highlights of the crap.  It's really a bit worse.  We've come up with a plan of action that we are set on at this point.  But I really am interested to hear other opinions and even suggestions.  Perhaps you've experienced something similar, and can offer a few gems?

I've created a poll, if you just want to answer if you would allow the therapist to provide service.    I've also opened comments.

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The One Where She Didn't Mean It.

This is actually part 2 of The One With The IEP.  We had so much fun the last few days, and with phone calls and emails, I thought I'd share it.  What I really want to do right now, is laugh until I cry, and do a bit of a victory dance.  But, as usual I digress.

The husband added the wine glass
I'm really only drinking chai.

When last I ranted about the IEP and the speech therapist, we were concerned that there was some insurance fraud going on due to some inconsistencies in how the services were being delivered, and the discrepancies in what we were hearing from the classroom teacher to the therapist.  This was indeed confirmed tonight when we spoke with the Director of Special Education for the Cumberland Valley School District.  Though, she preferred to say they discovered that things were billed incorrectly, for about a year.  Oops.  But, not to worry, we were informed by the same Director that it was okay, because the speech therapist didn't mean to break the law, or commit insurance fraud.  It's alright, I understand if you need to get a glass of wine here, or just need a few minutes to stop laughing.  I know we did.  I'm talking about the laughing part, not the wine. Though, I should really write a post about wine, because I'm beginning to think this blog needs more of it.

IEP - the draft copy.

Anyway, long conversation ensued.  We outlined our issues with the therapist.  Her lack of communication, her inability to write an IEP that actually had anything appropriate in it, refusing to put things into the IEP, not knowing the laws that govern an IEP, little things like insurance fraud (but seriously, it's ok - she didn't mean it), basically, we just don't trust her at this point.
So, now we wait.  I've asked for IEP team meeting again (by the love of all things holy, what was I thinkin?) to get the speech section straightened out.  And then we decide if we are going to call the Attorney General's Office to report the insurance fraud, I mean billing error - or whatever it is she didn't mean to do.  But really, why would we, 'She didn't mean it'.

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