Can't sleep. Worthy of a blog post? Heck, why not?

Tonight I totally forgot rule #11 in the "Care and Feeding of Lunatic Autism Mom" rule book. 

Do not feed mommy caffeine after 3pm.  

Caffeine was my one true addiction before I had kids. I drank caffeinated Diet Coke like a fiend and on trade show days I would take additional "all natural" caffeine pills. And then I would sleep like a baby every night. Then I got pregnant. Caffeine is bad for you. Aspartame is bad for you.  Processed meats are bad for you. Too much tuna is bad for you. So on and so forth. I gave it up, all of it, for the love of my babies. awwwwww......

The side effect is that now 10 years later I cannot consume any caffeine after 3pm and really it is better if I cut it out by noon. Dang it! Don't get me wrong, my deep and abiding love for Diet Coke lives stronger than ever (much to my husband's infinite chagrin) I just drink caffeine free. The only problem is...... most restaurants offer no diet, decaffeinated options and tonight we ate out. The few exceptions to the rule are mapped and cataloged in my phone, Five Guys & Chick-Fil-A have "unleaded" Diet Coke, Panera & Fuddruckers offer "unleaded Pepsi" (will do in a pinch).  My fail tonight: sweet tea at Famous Daves, yeah, not only did I hit the caffeine, I added in sugar too! Smart Mag.

Don't get me wrong, I am the first person who will tell you that Aspartame (the 'tame) is bad for you, really you should avoid it at all costs and I would never, ever, knowingly let my kids have it. It ranks so high on the chemically engineered, processed, overused, conspiracy theory list that there is no way it can possibly be anything but bad news. "They" say it isn't addictive and that if you are addicted to Diet Coke (or the like), you are addicted to caffeine. Well, obviously "they" have never met me since I gave up caffeine 10 years ago and I have tried to stop power chugging Diet Coke about 100 times in those years. Something else in there is addictive but I am not a conspiracy theorist so......  I will someday cut back to moderate levels, maybe even give it up but tonight is not about Diet Coke it is about the evil caffeine and what the heck was I thinking to drink it at 5:30 pm!  

The up-shot of the lack of sleep is that I now know where my grey pjs are since I was cold and I had to find them before I came downstairs. Also, I have made an outline for my crazy pre-storm Monday which includes a power shop trip to Costco with my bodyguard (read: Husband) as soon as I drop the boys off at school and then we are back home to make lunch for Jan (read: mother in law or Nona) and then head out back to the school to watch the boys receive academic awards for last term (!!!!!!!!!!). Proud mama post to come and I will have plenty of time for it since some huge, massive, ice/snow/rain thing is supposed to cover half the US tomorrow and I'm absolutely positive that I'll be spending the rest of my week chillin' out and entertaining 2 boys! We'll make each other insane and thus I should be loading up on sleep tonight! 

The other up-shot of my insomnia is that while laying in bed trying to force myself back to sleep, I came up with some new blog topics! Stay tuned for the following (and let me know what you want to read more about! I'm always open to suggestions!):

• Stop My Brain, I Want to Get Off (wow! that sounds way more dirty on screen than it sounded in my head! HA!)
• I Like Talkin' About You You You You Usually, But Occasionally I Wanna Talk About Me (what I think, what I like, what I know, what I want, what I see..... a nod to my country roots)
• The Day I Stopped Hearing Drums In My Head
• The Gift Of A List
• Keeping Time
• I'm trying to talk Rob into writing a guest post! 
• and I'm sure more and more about my babies, my 'isms, my rantings, and more.

PS- I have followers! I love you all and love all your comments, cares, concerns, etc! I have an opinion on just about everything so feel free to send me any kind of message (below, on FB, email, text, etc.) on what you like/hate, want to hear more/less about, what color shoes I should buy, anything! Good Night (hopefully)!!!

Heeeeere's Adam!!!

Adam is my heart and soul. He is sensitive, sweet, kind hearted, loving and when it comes to a fight he can give as good as he gets. I was so excited to be pregnant again when it was time for Adam. We found out about him the day Hurricane Isabella went up the Chesapeake Bay and it's been a whirlwind ever since! I was 5 months pregnant when we found out we were having another boy (yay!)  and when we sat in the office at Infants and Toddlers and found out Cameron had Autism.  I remember the psychologist asking us if we knew what we were having and I said "A boy!" He said knowing that Cameron had Autism and that it tends to run in families, our second son had a 1 in 20 chance of having Autism as well. It didn't matter, it never mattered. 

Adam was the ultimate chill kid and spent the first few years of his life in waiting rooms while Cameron did intensive early intervention therapies. He napped, we played, read books together, and created mayhem in the smallest waiting rooms known to man.  Through many sibling study sessions at Kennedy Krieger I watched him fall off the curve and into the "Autism zone". This seemed wrong because he was the opposite of Cameron in every developmental way. Thus the word "spectrum" in Autism Spectrum Disorder. My boys present completely opposite yet both have Autism.  

Adam is now 6 and in first grade. He is in a fully inclusive classroom and has only a part time aide. Adam's interests run deep and true. His first love was Thomas the Tank Engine. We watched Thomas, played with Thomas, made Thomas cakes, drew Thomas, scripted Thomas, etc. etc. Around Christmas time when he was in Kindergarten I said, "gosh, I wish he would out grow Thomas!" Welcome Star Wars and Legos. Thomas is out and Wookiees are in! He can introduce you to any and all Star Wars characters, he knows all the ships and bases and he knows the storylines from all 6 movies. Yet, he doesn't like to watch movies so he has never seen a Star Wars movie. Super smart Adam has learned everything there is to know from books and his research on the internet. 

Adam is a hugger and a kisser. Not just a passing hug and kiss but a "lets search the house until I find Mommy and tackle her" hug and kiss. Even then one is never enough. When I am sick or tired he sits behind the curve of my knee and reads me books and pats my leg. His kindness and compassion shows through and I believe it will make him one of those amazing adults that follows his bliss and yet keeps others close to his heart. Of everyone I have ever known, Adam makes me want to be better, do better, love more and give more. He feeds my heart and soul and I adore him "to the moon and back". 

Meet Cam!

Here is my Cameron! I want to introduce you to the person who created the Ranting and Raving Lunatic Autism Mom. The day he was born he was perfect and my whole world changed. The day he was diagnosed he was perfect and my whole world came into focus. 

Today he is nine and in third grade. For school meetings we are asked if he is diploma bound and I say, "No! He is college bound!" He is so smart, clever and funny, he holds the strings to my heart. He makes me laugh, he makes me cry and he frustrates me until I want to scream. Every single word that "they" said he would never speak is gold and every hug "they" said he wouldn't give is heaven. When he is having a bad day then so am I, when he is happy the world is bright. I love him, "so much"

Cameron: "How much is so?"

Me: "Way way more than you know"

Cameron loves to read and cook, he loves is DS, Wii and computer. His desire to do something involving a screen borders on obsession. He has listened to classical music since he was an infant because that was what soothed him (well, that and Meatloaf and Queen but thats another blog topic), when he turned 5 he started playing his favorite melodies on a cheap electric keyboard we picked up. He prefers to play by ear and will stop playing all together if you put him in lessons. He loves to play the drums. The music he listens to now is more current and he picks out the drum beat and rushes to his drum set to figure it out. I love to hear him play, I love to hear him progress though a song and I love to see his face when he figures it out! 

HI! I'm Maggie and I'll be your tour guide this snow day.......

I can hear all the kids in Frederick yelling YEA!!!!  It's a snow day!!!!

I know some parents hate snow days and some parents love them. I fall into the latter category, I LOVE SNOW DAYS!  Here is the good, bad, ugly and fantastic parts of a snow day for this Lunatic Autism Mom:

• Maybe they will sleep in! Usually I will wake up early on a snow day and check my phone for email alerts from the school. If I see one, I will sneak into the boys room and shut the curtains tight and turn off their night lights.  Sometimes it works and they will sleep a little extra. Extra sleep for boys = extra sleep for Mom + well rested boys in good moods!

• Hot Chocolate for breakfast! Okay, okay lets give a nod to nutrition... It's not full fat, melted chocolate over a hot stove with extra whipped cream and marshmallows-- it's Ovaltine.  Yes it still exists and yes the boys think they are getting a big treat for breakfast. Sometimes I even throw in a few mini marshmallows. 

• Here's why they might not get any mini marshmallows: Rice Crispy Treats! Snow Days and baking goes hand in hand and the boys love to help stir Rice Crispy Treats! This is also a day where I will pull out the family brownie recipe or apple cake recipe. Depending on the projected level of snow we might even ration the mini marshmallows and make Peanut Butter Rice Crispy Treats instead. These are DELICIOUS and in no way nutritious. 

• We will have at least one big knock down drag out fight, usually involving a light saber duel gone bad. Both boys will be sent to their room for at least an hour. I will use this time and my high frustration level to throw laundry in the washer or walk through the main floor of the house throwing things in sorting baskets or trash cans. 

• Let's organize! On snow days I have an overwhelming urge to organize something. Last time it was the play tables in the boys' room and the pantry. Today it might be the medicine cabinet. I know that would make Rob (the husband) happy! 

• Clearing snow. Time for these boys to earn their keep! We've got three shovels, yep, you read that right THREE not four. Being the only girl in the house should have some privileges! I think not shoveling snow should be one of them. 

• We might do a craft, we might read together in a heap on the sofa, I'll probably take some videos and pictures of silly things to send out the family and facebook and we'll play a game or two but most importantly there are things we are NOT going to to!!!

Snow Days are NO DAYS for therapy!!!!!  I did the math remember? There is no time for play during the week, its a small consolation but let's check the Autism at the door on snow days! At our home, Autism is our normal and when we are here normal reigns! The in home therapists are going to call and cancel because they don't drive in the snow, social skills/OT/Speech is going to be cancelled because no one is going to do the drive and the schedule already flew out the window the second you got notice from the school. Snow days are a free pass to do what you love, to watch your kids have fun, and get caught up on those little nagging tasks that just require a little free time. Here's your free time and your free pass, I hope everyone has a wonderful, safe and fun snow day!

 

Color me impressed

Thanks to Pathfinders for Autism I have a new obsession, a little piece of Autism tracking software listed in the most recent Pathfinders article, "There's an App for That!". Link:

http://www.pathfindersforautism.org/upload/gadget-apps.pdf

I am speaking specifically of the AutismTrack app by HandHold Adaptive. With it you can track medications, behaviors, therapies,etc all from your hand held device! No, I'm not being paid by them and no, I haven't played with the app yet but it is very drool worthy for this Lunatic Autism Mom.  Imagine being able to input your medications, doses, times therapies and behaviors all in a day and potentially draw parallels between what treatments are working and what treatments are creating issues. At least that is what I would look for in the data. Maybe I changed vitamins on Thursday and it was the beginning of a new negative behavior,with this could I potentially make that connection faster and make changes? It sure would be nice!

You can't blame me, I'm married to a Software Engineer (oops, sorry *ahem* a Principle Software Engineer II) and isn't the answer always in the software?

Here's the deal though, certainly a possible deal breaker for me. It ONLY works on the iPad, iPod Touch or an iPhone and costs $49.99 from the Apple App Store. I don't have an iPod Touch or iPad and I have absolutely no interest in an iPhone so the start up cost for this is pretty staggering. I'm happy to see that apps are being written to help our ASD families but can you give some love to the Andriod or Palm users of the world?? 

Here's the company, feel free to drool along with me. Link:

http://www.handholdadaptive.com/autismtrack.html

Autistic Kids Work Hard

Did you know that Autistic Kids are the hardest working kids on the planet? This isn't a documented fact but lets take a look at those pieces of the puzzle that we are supposed to be fitting together and see if we can't come up with a conclusion.

Early Intervention says that we need to test and diagnose Autism as early as two, earlier if symptoms are present. With a diagnosis of Autism, PDD-NOS (pervasive developmental disorder- not otherwise specified), Retts, and Aspergers (a Dx usually made after 6 years old) you also get recommendations for treatment. Although lets clarify here that MOST of the time when you get the diagnosis you also get the phrase, "we don't know what caused it and there isn't any known cure, but some therapies can help". We won't address the insane level of frustration that comes with that statement now, lets focus on the therapies. Ok, you get the diagnosis now what? Lets start with Speech Therapy, minimum 2 days per week for 1 hour per session. Occupational Therapy 1-2 times per week for 1 hour. Classroom setting instruction to prepare for preschool and learn socialization 2-3 times a week for 1 hour. And if you are really lucky, have the money and can find reputable instructors ABA (applied behavior analysis) is the way to go. The preferred treatment for ABA is 40 hours per week of intensive treatment in the home with 4-6 therapists. Floortime is also recommended but the hours required vary depending on the need of the child so we'll leave this out for now.


Total time recommended for 2-3 year old children diagnosed with Autism: 47 hours per week
speech (2) + OT (2) + Class (3) + ABA (40) = 47

Once the kids start school the time required from parents is less as much of the work the kids do is now outside the home. That doesn't mean our kids aren't working their tails off! Full inclusion, Special Education services, Special Programs, etc total 6.5 hours per day. It is still recommended during Elementary school to continue with Speech and OT but it's okay to cut back to one 1 hour session per week to target specific goals. Due to lack of time during the day ABA is cut back or eliminated completely, ideally the kids would receive some ABA instruction within the school but although that is the recommendation, it is rarely ever available within public school. During this age we see a lot of behaviors coming out, these kids are noticing that they aren't like every one else and they act out, loose focus and become disruptive. We now add in a Behavioral Psychologist to assist us with problem behaviors which we will visit 1-2 times per month for 1 hours sessions either one on one with the therapist or with the whole family. To address issues of anxiety, stress, ADHD medication may be necessary, medication can only be prescribed by a family doctor or psychiatrist (bonus points if you can find one who specializes with Autism!). Ideally a monthly visit to check progress and change meds is necessary. Now would be a great time to add in a Social Skills class! This age is a great time to introduce socialization, teach proper group manners and interaction. I won't lie Social Skills groups are extremely difficult to find but optimally a group would meet for 2 hours per week (either one 2 hour session or two 1 hour sessions). Social Skills teaches ASD kids the lessons that most kids pick up naturally by reading social cues. During this time, we as parents also take a look around at all the "typical" kids and what they are doing. Our kids are just as fun and just as bright and we want them to try soccer/basketball/baseball/karate/dance too! We'll either look for a special class or we'll sign our kids up with the typical kids and add 2-4 hours minimum to our already packed schedule. I want to add here that the "typical kids" are working hard too, sometimes playing multiple sports and taking classes for outside interests like music. I almost forgot! HOMEWORK at about 1 hour per day

Total time for a typical elementary school age child: 41 hours  30 minutes per week
school (32.5) + outside interests (4) + homework (5) = 41.5
Total time for an Autistic elementary school age child: 46 hours 15 minutes per week 
school (32.5) + outside interests (4) + Homework (5) + Speech (1) + OT (1) + Psychologist (.5) + Psychiatrist (.25) + Social Skills (2) =  46.25

I wanted to break out an additional opportunity that some Autistic kids get mid way though their Elementary School years. Most states have what is termed an Autism Waiver where if your child is deemed "Autistic enough" they have access to state funds for:

• Respite Care
• Environmental Accessibility Adaptations
• Family Training
• Service Coordination
• Supported Employment
• Residential Habilitation
• Intensive Individual Support Services
• Therapeutic Integration (after school)

This is a use it or loose it program people! Once you are approved for the waiver you have to jump in with both feet and get going or you'll get kicked out! What this means for our 7-9 year olds is that their Social Skills will be paid for (yes!) if you can find a group in session that takes the waiver as payment (no!). In the mean time while you are waiting for that magical group to start you have to use these services or you'll loose them! Usually you sign on with a group that offeres Waiver Services and they handle the paperwork and schedule for you. From the start they "highly recommend" Family Training for 2 hours every 3 weeks. At Family Training they tell you that your chances for the best success is to have a Therapeutic Integration specialist (or 2) come to work with your child 3-4 times per week minimum 2 hours per session. For these sessions they are strictly forbidden by the state to work on homework although some do anyway because if not when is it going to get done?

Total time for an Autistic elementary school age child with the Autism Waiver:  53 hours per week

school (32.5) + outside interests (4) + Homework (5) + Speech (1) + OT (1) + Psychologist (.5) + Psychiatrist (.25) + Social Skills (2) + Family training (.6667) + Therapeutic Integration low end (6) =  52.9167

THESE ARE SOME DAMN HARD WORKING KIDS PEOPLE!!!!! Some adults don't even put in 53 hard hours per week! I wanted to write this for you all not because I'm complaining but because I don't think we take enough time to sit down and do the math. The news reports that we are over scheduling our "typical" kids and our reaction is to cut back on sports, piano, gymnastics, etc. But what do you do when the doctors and experts recommend these therapies as "must have" for the success of your child? Do you run your child and yourself ragged in hopes of giving them the best shot at normalcy? Do you cut back and take the chance that all will work out in the end? What do you say to the specialist who accuses you of not meeting the needs of your special needs child and who "strongly suggests" that you do more, pay more, dance more? Can we cut back? I don't know but I do know that this "normal" for Autism families often goes un-noticed and un-rewarded it shouldn't be. We are telling ourselves and our kids that when you work hard, you get more work!  ASD kids don't get paid, they don't get rewards and bonus' they get a shot at "normal" whatever that means. We loose motivation with them, we loose motivation ourselves and it's a tough thing to get back. I want to impart words of wisdom but I have none at this time. Stay tuned.

Behavioral Intervention in action!

Two roads diverged in a wood and I - I took the one less traveled by, and that has made all the difference.

Robert Frost

Yesterday my oldest son threw up at school. He's nine. As I was driving to pick him up two thoughts were in my head, my "typical mom" voice kept thinking "my poor baby!" but my "Autism mom" voice thought "why that little schiester!" You see this is the second time in two weeks that I've been called to the school for Cameron throwing up. The first time no one actually saw him praise the porcelain god but he came home anyway this time the nurse did actually bear witness. Still, it worked once.....

There are two roads in my life, the "typical mom" and the "Autism mom" and although the "Autism mom" road is traveled less the world around, for me it is my freeway. Cameron stayed at school. He had no fever, was not flushed or lethargic and in talking to him it because obvious rather quickly that going home was his ultimate goal. I am lucky, I had the support of the assistant in his class that agreed with my assessment of the situation. I did not have the support of the school nurse.

That is the basics of Behavioral Intervention in our home, sometimes we have to check our impulses at the door and do fast and frenzied assessments to guess at the root of the situation. Yesterday I made the right choice and after a quick break for him to align his brain to staying at school he had a good day! I wish I could say the same for me, my "typical mom" self questioned, re-questioned, checked my phone a hundred times and worried that I had left a sick kid at school. My "autism mom" self enjoyed the scenery on the road less traveled and hoped that this behavioral intervention worked on the first shot because getting sick at school is no fun, no matter the reason.

Blogworthy?

I wonder how many blogs start with a post about whether or not they are blogworthy? Well +1 here! A joke between friends landed me here. I like to write + I have two kids with Autism = A blog. Do I really have anything profound to tell you all? Maybe. Do I possess an extreme and fabulous writing style? No. Will I post daily with new and wondrous advancements in Autism? Absolutely not. Besides whatever I post that is new and wondrous will be dispelled, litigated and expunged from the memories of everyone within minutes, hours, days, weeks, or years. I hesitate to go back decades because, seriously you DO NOT want to go there if you are an Autism Mom. Refrigerator Mothers? Seriously? Who came up with that crap? Anyway..... moving on because no one needs to go back there.

For my very first blog post I am going to share with you all the questions I am asked the most when someone finds out I have two boys with Autism. Some of these are my biggest pet peeves but I will not tell you which ones because there is no such thing as a stupid question, only a stupid answer. Peeve or not, it is better to ask than to assume. So without further ado, here are some of the questions I have been asked and the answers I have given (or the answers I should have given if I had better spontaneity in my responses). In time I am sure I will revisit, revise and repost the Autism questions as I remember more or as I receive more.

1. What do you think caused your sons' Autism? 
My standard answer is always: "I believe Autism is caused by a genetic predisposition with environmental triggers." Nice huh? This covers my ass for the two major sides of the Autism coin both biomedical and scientific! More on both to come, you can't talk about Autism without talking biomedical and science.

2. Have you tried THE diet?
In this case THE diet being the Gluten Free/Casein Free diet (GFCF) and yes, we did try it. Do we still do it? No. Will we revisit THE diet in the future? Probably. I've attended three Defeat Autism Now! Conferences (DAN) and those are comprised of three solid days of clinicians and moms who sing the praises of Biomedical Intervention. They are very educational and certainly worth your time and money if you want to try the Biomedical approach to Autism. Because of those conferences I was completely prepared for the GFCF trial which we decided to follow to the letter for 90 full days. First of all it was the longest 90 days of my life and secondly the changes I saw in the boys were not so grand that I felt compelled to continue. Taking plastic out of the house actually created a bigger change in my boys' Autism. Switching to all natural cleaning products did the same. But those are for another rant.

3. I don't know how you do it!! Seriously, how do you do it?
I'll admit to this being one of my pet peeves. Sorry if you have asked me this in the past. I always want to respond with, "Do you think I should stop?" Really what should I stop? Loving my boys? Trying to take care of them to the fullest of my ability, budget and level of insurance? I include the last because having an ASD (Autism Spectrum Disorder) child is a HUGE financial drain, having two just means HUGE financial drain x2. Not that every treatment should be driven by cost but when you are looking at 1 Social Skills session running between $800-1000, you really have to find your priorities and budget your resources accordingly. Sorry- tangent, I will do that a lot.

4. Are you still married?
An odd and yet honest question that stems from the absurdly high divorce rate of special needs families. Yes, I am still married and No, it is not always easy. I decide every single day to stay married and to foster that marriage as much as I can with the time I have. We don't always agree on how to help the boys. We butt heads over some of the dumbest decisions. It is an impossibility to complete any kind of household remodel or large scale project. You see, I am married to an engineer. No further explanation is required.

5. Why don't you start a blog?
Done. Stay tuned.