Hard Lesson Learned #1

I'm going to number these because there are so very many hard lessons learned when you have a kid with Autism, some good, some bad, some fun, some not, but all are important steps. Today's lesson is a good one and it is in many parts all leading to a very important result. 

• It's okay to need a break, it's okay to take a break.

• Your husband (wife, sister, babysitter, mom, etc) won't do things the same way you do. It's not better, it's not worse, it's just different.

• Preparation for a break  can be exhausting, daunting, and down right stressful but it is worth it.

• What you don't get done will still be here when you get back, as will your kiddos and they will be SUPER HAPPY to see you.

• You can't give what you don't have. If you run your batteries down too low and don't recharge them, then what do you have left to give?

• You need an outlet, find one.
  

• You deserve it.
  

I tell you all of this because of my to-do list today. Today I am packing for my annual trip to Crop A Doodle Doo!!!!  "What is that?" you ask. Well, let me tell you! It is a farm house just north of Indianapolis, Indiana where I meet my mom, my Aunt Debbie and my cousin Dawn for three days of Scrapbooking and Spa treatments. Once we arrive they cook for us, clean up after us, make our beds, etc. etc. etc. It is HEAVEN! My only worry for three days is playing cut and paste with family memories. I get to go though all the pictures I've taken in the last year, lose myself in memories, look at smiling faces and then put it all together to tell the story of my family. My boys love my scrapbooks and that makes the weekend all the more worthwhile.

Here's a secret about this Lunatic Autism Mom, I'm crafty. Not as in a sly, conniving, talk you out of your lunch money, crafty but a cross stitch, scrapbooking, home decorating, crochet, paper crafting kind of crafty. It is one of my outlets along with reading, baking and organizing. These are the things I fall back on when I am overwhelmed. I gain perspective by using a creative outlet. I love a hobby and I think everyone needs one. Specifically a hobby that doesn't include reading Autism books, researching Autism, creating alternative diet meal plans, organizing supplements or planning therapies. I've done it, I focused only on Autism and burnt myself out and in the process lost my interests and my creativity for years.

So.... this is year 5 of taking this one weekend for myself every February and I leave tomorrow morning at 8am, right after the boys go to school. Rob is taking over mommy duties in addition to daddy duties, making meals, giving meds, taking them to appointments, packing their lunches, helping them pick out their clothes, working from home, keeping the house from falling apart and he is going to do a fantastic job of it. I have four years of past history to go by and know of only one instance of Cam going to school looking like a hobo. All in all a good track record, super bonus points for Daddy and lots and lots of extra quality time for the boys. While I'm gone I'll miss them like crazy and when they lay down at night they'll tell Daddy that they miss  me like crazy. Then I'll come home and we'll all be so excited to tell each other about everything that we did and there will be lots and lots of snuggles and cuddles. Then when I go to bed that night I'll think about:

How much you have to care about someone to miss them as much as you do when you aren't with them.

How precious a gift it is to recharge your batteries.

How wonderful it is to get to do something you love that is just for you.

How good it is to realize how much home and family means when you return.

"See" you Monday!!!

awwww......

(quick post, no time, early dismissal today- sorry!)

Last week I read about a boy who has started a group in California called Autism Ambassadors and it is neurotypical kids who make an effort to include kids with Autism.  I am so impressed by this boy and what he is accomplishing! It gave me some hope that something similar may happen closer to home and today I came face to face with it.

Adam HATES getting out of the car in the morning and walking into school. Many mornings we have both ended up in tears, he HAS to go and I have to FORCE him to go. He calms down quickly and he likes school but seeing his tears just hurts my heart. Last week a couple of his classmates stayed in the school lobby after they arrived, at the teacher's request, to walk with Adam to his class. It helped! Now, every single day these two boys wait for Adam in the lobby, without the teacher asking them to, and walks with Adam to class. EVERY SINGLE DAY! I am so impressed by these boys!

I want to do something nice for them to let them know how much I appreciate their help but I can't single them out of the class without causing issue. Soooo.... I think we are going to use Adam's birthday as an excuse to throw a big blow out party to thank all of his class for their help this year. I'm going to write an extra note in the boys' invitations to let them and their parents know how much I appreciate their thoughtfulness in helping a fellow classmate and my hopes that they will come to the party. Then we're going to go Star Wars crazy!!!

Additionally, I think I will contact the principal and Adam's teacher about possibly recognizing these boys at the end of year assembly. It seems like something that should get special recognition when a classmate is extra helpful to another classmate in need.

Anyway, short post today, just something I wanted to get off my chest. It gives me hope and hope is too precious a commodity not to share. For all my friends who also have young kids with Autism, I hope this gives you hope too.

Exhaustion: my unproven theory.

For me there are many different kinds of exhaustion. There's the exhaustion that comes from a full day of doing physical work like moving, spring cleaning, being up with the baby all night or attempting to throw a garage sale (something I will never again attempt in my life). There's the kind of exhaustion that comes with using your brain too much, cramming for a final, doing mental gymnastics at work trying to solve a seemingly unsolvable problem or reading a particularly scientific text and trying to remember the wisdom found within. There's emotional exhaustion, the kind you feel when someone close to you is not close to you any more, what you feel when you are watching on a one-way mirror when your child is being tested for delays, what you feel after a good, long, hard cry. And finally, my unproven and untested theory The Exhaustion of Autism which is a strange combination of the above exhaustions with a lengthy time line attached.  I'll explain. Even if you don't have an ASD kiddo, I think you'll still be able to understand this theory since it is based in babyhood.

This is something I came up with talking to my psychologist. Occasionally I do come up with something enlightening and she is so very helpful in pointing out any enlightenment I find during my long ramblings in her office. This is greatly appreciated. On this particular day I was talking about how exhausted I was, just bone deep, fall on my face, shut my brain off, talking in babbles, can't even lift my arms exhausted and yet, I was sitting, talking and somehow made it all the way to her office awake. What I was talking about on that day was back when Cameron was 3 and had zero communicative speech and very little alternative communication. What I realized when I took a brain trip back 6 years is that the tricks and tools I used then, I used when he was a baby and I still use now.

I'd like to add an aside here just in case I have some non-ASD mom readers. Different types of speech are considered when assessing a child who might have possible delays. Receptive speech is what the child hears and understands. Expressive speech is what they can relay to a listener. Rarely is expressive and receptive speech at the same level and for ASD kids the difference could be staggering. Cameron's receptive language was much much higher than his expressive language when he was diagnosed and even now there is a marked difference. Adam was the exact opposite, his communicative speech was far superior to his receptive speech. Alternative communication is things like sign langage, PECS (picture exchange), typing, using voice output devices, etc. 

When you bring home a newborn home from the hospital you are immediately entrusted to care for the tiniest human imaginable, you have to assess his needs, wants, desires and distress pretty quickly or you are going to find yourself walking the halls at 3am wondering who's baby this is and why they gave him to you? Moms kick in pretty fast and within a few days we've got the hungry cry, separated from the poopy cry, differentiated from the 'I'm soooo bored' cry. It's sink or swim here, if he's bored you can let him cry long enough to finish brushing and flossing, if he's hungry you can probably skip the floss and just hit the brush, if there's poop involved you might just have to deal with stinky breath for a little while longer. BUT loe and behold! Your child grows, they raise their arms and say 'UP!', they point to the cookies, they walk right into the bedroom, grab a diaper and throw it at your head. And all that extrapolating of cries and reading of the baby mind takes a back seat more and more every single day.

But not when your child has Autism. At three, Cameron could not talk, could not point, didn't get the signs and got too frustrated to use PECS. He did a lot of grunting, screaming, and crying. As his mom, I kept the infant connection. I could look at his face and see what he needed, I could hear in his cry his distress and his desires. I could talk to him, he would understand and his cry would change and we would hold a conversation of one side crying and one side talking and in the end of a 15 minute session you feel like you've just taken a 3 hour college calculus final. Six years later we have expressive speech, we have receptive speech the need for alternative speech is greatly reduced and yet I have to hold that connection strong because when anxiety hits, when frustration hits, when misunderstanding hits, communication massively FAILS. Immediately I am right back in front of the pantry door with my 3 year old saying, "what do you want?" and he is screaming in my face in pure and helpless frustration only now he is nine and I can't just lift him up into the pantry and let him grab whatever it is he wants. Now his wants transcend the pantry and he wants the bell not to ring until exactly 3:10 and he wants his teacher and not a substitute, he wants the red shirt that was torn and thrown away 2 years ago and his brain will not let him let it go. 

So here is the basis of my theory, the connection that you form with your infant in the first few days of life is an exhausting and emotionally draining. Yet it is ultimately one that lessens over time unless you have a special needs child specifically a child with a communication delay. In this instance you are forced to remain the tool to which he uses to communicate with the outside world. To read his mind is emotionally exhausting, to be his ears and voice is mentally exhausting and to keep him safe when the anxiety and frustration hits and he lashes out blindly is physically exhausting. To do them all at once, in public, in the span of less than 3 minutes is Autism Exhausting! 

This may sound negative but I have to tell you, being able to connect with my boys this strongly and this long has allowed me to make their life easier. Some days I truly feel like I can feel what they are feeling and I can put myself in their positions to understand why they are so frustrated and I can do it quickly and easily. Let me see if I can give you a few examples:

• Neither of my boys wanted to go to speech during the school day. It was a fight for the speech teacher to get them out of the class room. When I checked their class schedules, speech wasn't written down because not all the kids went to speech. Write it on the class schedule, no more problems with the boys going to speech. (This seemed really DUH! to me and I couldn't believe they didn't catch on to that sooner)
• Cameron kept twisting in his chair and the teacher couldn't get him to sit straight. She would reward him for sitting straight for 5 minutes at a time but he never got the reward because he twisted in the seat every single time before the 5 minutes were up. The clock was BEHIND him in the classroom and he was twisting to see if the 5 minutes had passed yet. Put a clock in front of the room too, he never twisted again because the reason he was twisting in the first place was that he was looking forward to the timed events on the schedule.
• Cameron would get completely overwhelmed in class, would need to pace and disrupt the teacher constantly. Because of his program he could do a student request to go to the support room for a break OR if he got too agitated he would then be sent to the support room for a forced break. Of course the student request is preferred to the forced send but Cameron never did the student request. When Cameron gets anxious or frustrated the first thing that goes is his expressive speech, followed closely by his receptive speech so by the time he hit frustration he couldn't do the request, ended up being sent to the support room and it took him at least twice as long to calm. I gave him a laminated bookmark that said, "I need a break!" and told him all he had to do was to give it to a teacher or assistant at any time he needed a break. He took at least one student request every day for at least 2 weeks and in that time was never sent to support once. He couldn't talk so we took talking out of the equation completely.

Okay, thats all the examples that this exhausted brain can come up with right now and the purpose of them is this; these are excellent teachers, well trained and familiar with Autism (we really have wonderful teachers this year) and they couldn't see these needs because they couldn't connect with the boys', see what they see, feel what they feel. It is for that reason I try so very hard to maintain that connection and live in fear of the day that I may not be able to help them in this manner.  All the Autism moms out there know of this bone deep but keep moving exhaustion because I'm sure they've felt it at least once today. All the moms of typical kids out there also know this exhaustion because they felt it for at least the first year or two of their babies lives. We all have the connection in common, even if we don't have the same end date. 

Anything you can do.......

I can do better? Probably not but thats what the song says. Maybe it was pure coincidence that I was faced with the, 'I'm better than you' scenario twice in two days or maybe it's my brain needing to rant about it. If anyone ever asked me if I thought I was better than person X my answer would be swift and sure, "Good god, No. Absolutely not, no way, no how!" I'm just not the girl who will ever go cross eyed trying to look down my nose at anyone or anything thing but.......... Everything can be told better in story form, right? 

Yesterday I forced myself to spend a little time at the library. I say forced because I really didn't have any time to spare but the library is my favorite place on Earth and for the last month my visits have consisted of turning in books, picking up holds and leaving. I spent a glorious 30 minutes looking through the section of new books, new audio books and book sale books before heading upstairs to check out traveling books and wander the stacks of fiction not considered "new" anymore. It was bliss, turn your brain off and just let the thoughts flow freely bliss. Then I figured I would take some time behind the computer and update my Goodreads account, look up my favorite authors, etc, etc. If you've been to the Frederick public library (which is BEAUTIFUL!!!!!) you know that at the top of the stairs to the left is Non-Fiction & Reference, to the right is Fiction & Biography, down the middle is table after table of computer terminals. Anyone with a library log-in can use them to surf the web or check out the card catalog. On this day it was bitter cold outside, well below freezing and the computers were almost completely full. I found one in the back next to a man in his flannel jammie bottoms and surrounded by bags seemingly filled with all his worldly possessions.  I smiled, logged in and started going to my favorite book sites. Across the table were 2 other men trying to figure out what time lunch was served. It dawned on me that I was sitting in the library surrounded by men who were either homeless or living at the shelter or halfway house just down the street from the library and they were killing time until they could go stand in line for lunch at the soup kitchen. All at once three things happened, my heart broke, my brain sent a reminder to pick up more food for the food bank and my stomach thought, 'ick, you better remember to wash your hands'. I logged off and went to check out completely disgusted with myself and my gut reaction. Who the heck am I to assume that these men were dirty? There are three mens restrooms in the library, just because they are living at a shelter I assume they are dirty? And does dirt imply that they are lesser human beings? Does living at a shelter make them less worthy? No it does not and I hate my gut reaction in that situation.

To bring it all back around to Autism (to which my whole world revolves it seems), we can consider the differences between Autism and Aspergers.  In the last seven years I have heard many things within the Autism community that has stunned me. I have heard: 

• Thank God my son only as Aspergers, not Autism.
• He doesn't have Autism, he has Aspergers.
• Maggie, of course you wouldn't know what I'm talking about. Your son has Autism, mine has Aspergers.
• Aspergers is not High Functioning Autism.

Seriously the list could go on and on. Autism is a diagnosis under the umbrella of Autism Spectrum Disorders. Aspergers is also a diagnosis under the umbrella of Autism Spectrum Disorders. They are different, they have different on-set, different characteristics, they are diagnosed differently and at different ages and they have different symptoms. What I don't understand is where one could be considered "better" than the other? Cameron has Autism, is was characterized by regressive speech at 2 years old. Because it was regressive it cannot ever be considered Aspergers. Adam has PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified and also a diagnosis under the umbrella of Autism Spectrum Disorders) which is not regressive and now that he is 6 we can choose to do further testing to have him labeled as Aspergers instead of PDD. I guess I'm wondering, why? It isn't like there is any different treatment or recommendations, it's still a covered diagnosis by insurance, what is the end goal of looking for a new diagnosis? Seriously, I'm asking. If you've got the answer I wanna know! People I've talked with are shocked that I wouldn't want to "go for the Aspergers diagnosis" like it is some form of golden Autism prize like, "if you have to have Autism, Aspergers is the one to have!" Can you hear me shaking my head in incredulity? When did having Aspergers start being better than Autism? I've always felt like the Autism community had a big "we're all in this together" vibe so it really upsets me when I overhear ASD parents saying some of the above things. And lets be clear, it IS the parents saying these things, not the kids.

Anyway, thats my ass-kick and rant for today. I hate my gut reaction when faced with the men at the library yesterday and I'm angry at the hierarchy I've noticed within the ASD community. For the first, I am disappointed in myself that I was even capable of such a reaction when faced with another member of my community. Aside from my genetic make-up I am no different than the man sitting next to me in his jammie bottoms. We breathe, we eat, we love, we cry, we laugh and we dream. His dreams are different than mine, his dreams are no less valid but I'm sure they are far more important. 

For the second, I am disappointed in the community I turn to for comfort. Let me specify that those who believe there is a hierarchy within the diagnosis is small but it is difficult to see past the person in front of you when they say your child is "less" because their child is "more". In talking with some doctors at the Center for Autism and Related Disorders at Kennedy Krieger Institute I have heard whispers that there might be changes coming to the diagnosis coding within the spectrum. I think this is coming for many reasons both for medical as well as insurance purposes (insurances love to deny PDD claims). It sounds as though all the subsets of Autism will soon all be coded as Autism Spectrum Disorders and will all receive the same DSM-IV code (Autism is 299.0, Aspergers is 299.8). I wonder what characteristic of the disability the hierarchy will then focus upon. I'm sure there will always be people who want to boost themselves up by putting others down but I am telling you right now, I will never understand it and I will never accept it. 

Perception

Perception is a wondrous thing. In the end our memory and feelings toward a situation can be swayed by what our perception was at the time. In actuality our afternoon and early evening sucked eggs. BUT thanks to perception I am going to re-engineer my afternoon into something more palatable, more enjoyable, more funny. Possible? I dunno.

Today I picked the boys up early from school, they were pretty stoked about early dismissal from school this morning so I figured "piece of cake". Sometimes I am just so flat out wrong. Cameron came down the hall first, he was super ticked off that I made him miss math. Oh the love of learning!!! No? He likes to go to math because his is in an included classroom for that subject and there is a little 9 year old hottie who won his heart when she told him, "you can talk as much as you want, Cam, I like you anyway." It makes the heart flutter, does it not? Anyway, Cam is ticked. Adam comes down the hall and takes off at a dead run for his mom tackle hug only to be headed off by his brother with a clean take down to the linoleum floor. Ouch! I did not see that one coming!! We start to head toward the door only to encounter another parent coming to pick up his daughter, she is sick :( Cam says, " I know her! She smells like strawberries!" The Dad looks at Cam sideways and mutters, "what? I don't think she does. Does she". And I shuffle the boys out to the van. 

[Aside: Poor Dad, boys are going to think your adorable daughter smells like peaches, strawberries, flowers, etc. Start collecting shot guns now. She really was cute.]

Now arriving! Two Harris boys reporting to the allergist, ma'am! I should have known it would be a difficult appointment as soon as Cam started going through my bag for his DS and Adam went on the hunt for his new Lego Star Wars books. I'll cop to the fact that I totally bought those for him because I knew his scratch test was going to suck mightily. There are seven chairs in the waiting room and my two boys managed to take up five of them. I fill out paperwork and collect the boys and their belongings and fit the whole lot of us into three chairs to await the nurse. Short wait thankfully, we are shown into an exam room where the boys did their spread out and conquer thing again and made a general racket while I attempted to tell the nurse the reason for our interruption of her previously quiet afternoon.

Rash on Cam's ankle post allergy injection is apparently NOT allergy but dermatology with bad timing. Okaaaayyyy. Apply ointment 2x per day and follow up with dermatology if it gets worse. Cam's appointment is then put on hold. 

Adam's persistent cough could be allergy or asthma. No wheezing in the past, no other symptoms, probably allergy, lets do a scratch test. I figured this would be the outcome thus the purchase of new Lego inspired reading material. Now when Cam had his scratch test last month, I was prepared. He is super easy to distract with the combination of time plus any electronic screen. Enter Nintendo DS and every single game we own. Adam is not so easy. Even with new books he was NOT going to passively lay around with 20 pin pricks on his back itching like the very devil. (*sweet voice*) Oh dear Autism Mom, use a visual timer. Now that he can watch the time pass, he will be far more easy to contain. HA! (*real life voice*) Lunatic Autism Mom, you will now have to put a vise grip hold on his wrists or he will grab at his skin, mix all the allergy serums up and then we'll never know to what he's allergic!  Hold tight but remain calm because remember, it's up to me to get him through the longest 20 minutes of his life to date. Talking nonsense about Star Wars didn't cut it, asking about his day either, finally I took to blowing on his back. He got up onto his knees (I'm still holding his wrists) and I said, "how do you want me to blow?" And he said, "this big!" holding his arms out wide. So I blew in his face and he said, "NO! Blow again." This time as soon as I took a deep breath he dove down onto his stomach so I couldn't possibly miss his back. I lost my deep breath in a fit of laughter and we proceeded to continue our Vaudeville act for another 5 minutes. Timer goes off and we do a happy dance to celebrate the fact that we don't have to live those 15 minutes ever again.  Nurse comes in, does a big suck breath, calls the doctor and dang it all if Adam isn't allergic to MORE things than Cameron!

Cam's appointment is taken off hold because now it is time for the allergy shots that he detests more than anything in the world. He starts flailing wildly and yelling and Lunatic Autism Mom steps in to capture wrists and arms once again. Nurse comes closer to Cam with the needles and Adam take a flying leap towards her yelling, "don't shot my brother!" Insert evil Mommy 'shut up' stare, Cam gets his shots, cries and we head out to the (now full) waiting room for the 30 minute post shot 'will he have a reaction?' waiting period. Somehow 6 people filling up the waiting room makes absolutely no noise and Cam's Lego Rock Band DS game screams into the silence plus he is still sniffling and saying, "shots are evil" (thanks so much Phineas & Ferb) and falling into a never ending cycle of scripting cell phone commercials. No reactions and we head for home. The End. 

Day fixed thanks to changing my perception of the situation! Of course to do so, I had to delete the part where Adam kicked the nurse in the shin, Cameron actually tripping the doctor because was laying spread eagle on the floor, the parents in the waiting room looked at me like a bad mom because to couldn't control my kids, my 50 sincere apologies to the doctor and nurse that I don't think they fully accepted, 3 new prescriptions to add to our increasingly long list that I can barely keep track of now, 2 follow up visits and 3 possible new consults to dermatology, ENT and surgical (SCARY!). I think for tonight I'll eat raw cookie dough (even though the package says not to and I'm sure some dietary police will throw me in the clink), watch Glee and enjoy the alternate reality that changing my perception has afforded me.

I'm feeling better and want to know....

What makes you SMILE?

I'm sick and I need.....

Things That Make Me Smile

If I had a sofa I would be laying on it moaning about just letting me die in peace but I have no sofa because it is supposed to be delivered today. I really should have taken into account the possibility of getting sick before I hauled off the old sectional and left the room empty until the new one gets delivered. So I'm waiting waiting waiting on the delivery men who should be here any time between 11 and 2. Coincidentally the hours of 11-2 would have been the 3 hours I would have crawled back into bed while the boys are in school. Alas, I am awake, I am dressed, I am waiting on the delivery men, I am high on DayQuil and Diet Coke.  

Lets not waste time though, I could be sharing with the world my Rantings and Ravings! Since I feel like four month old gum stuck on the bottom of a geriatric patient's shoe I figured this would be a fantastic time to smile. Of course my kids make me smile and if Rob flares his nostrils that makes me smile too (I smile because I can't do it yet I've tried for years!) but the boys are at school and Rob is somewhere on a boat outside of some Naval Base in Virginia so today I am in charge of my own smile destiny. Thus I am wandering my house searching for smiles and listening to Pandora Radio (another thing that makes me smile) and cataloging things that make me SMILE!

• Colorful pens to fill out piles of paperwork, write love notes to my boys and to keep the lines of communication open with teachers. 

• Things with 'H's on them. 

• The song If You're Going Through Hell by Trace Atkins.

• Family pictures, wreaths, clocks, and words. This quote says: In a world where you can be anything, Be Yourself.

• A book with such great dialog that you laugh, cry and smile along with the characters (plus it has to have a happy ending!)

• Kids artwork.

• Books, Books, Books, Books, Books, and stuff stuffed in around BOOKS!

• Using things for purposes in which they were not intended and living things (although this fern has been dying since I accidentally gave it a sunburn in July, I have high hopes for a full recovery). 

• A clean bathtub filling up with hot water and bubbles plus unlimited time to enjoy it. 

• The possibility of a rainbow. 

• A strange little dancing robot we got at Rob's award ceremony last Feb. He is hard to see but he is right next to my 'rents picture.

• The mess that comes with a scrapbooking obsession.

• Beads picked out by my boys, friends and family.

• Really great chocolate.

• Oddly specific dish-ware. In addition to this one I have a small pitcher that says MILK and a mug that says TEA.

• The fact that my cold has lowered my voice so much that I can sing along with all the twangy songs on my country stations (and Lady Gaga which has to be a strange coincidence). 

• Homemade gifts

• Everything about this picture.

• The possibility of feeling better. 

• Everyone who reads my blog, "likes" it and comments!

Gaining Perspective

I was hesitant to write a post on this, I had already written half a post on Observations but after breakfast with a younger group of kickass Autism moms I think perspective is needed more than observations. That isn't to say that they need perspective, actually they were all pretty well and truly grounded and focused. Probably way moreso than I was early in our diagnosis! 

I think a lot can be said for perspective and it isn't only parents of special needs children who need to do a perspective check every now and again. What we see on tv and read about in books is very rarely actual life even if it is called "reality tv". I know in my reality that if I got into a cat fight at a local restaurant with another housewife I would be thrown in jail, not signed on for another season with a fatter paycheck. If I fought with my friends, punched a girl in the face and slept around indiscriminately I would not get a book deal (meanwhile, shame on the population for buying that book and making it a #1 best seller!!!).  I'm off track. Sorry. I understand, it's a train wreck and you can't look away.

Here is my reality, I have 2 boys with Autism, I am married, I am educated, my husband travels for work at least 50% of the time, I am overweight, I have insurance, I have a home, I have a little savings, I drive a minivan (how much more real can I get with a minivan?!). 

Here is what I have to keep in perspective when I start focusing on the details and forget the whole picture.

Autism does not reduce my child's life expectancy. Let me repeat that because is it so very important. Autism DOES NOT reduce my child's life expectancy. Around the same time we received Cameron's diagnosis, I also met another boy around the same age as Cameron. His diagnosis was Muscular Dystrophy. I was worried about how to help my child have a full-filling and rewarding life. His mom was worried about how much she could teach and show her child in the short 12-14 years he was estimated to live.

Last month I was talking with my friend who has a daughter in high school. She mentioned that she needed to go to WalMart and buy travel size bottles of shampoo. I asked if they were taking a trip. No, her daughter was taking them to school to donate. What? Her high school has 27 homeless students. TWENTY-SEVEN!!!!!  The school counselor is giving the kids small bottles of shampoo so that they can hide them in their backpacks and so that they can bathe without the other kids knowing they are homeless. There are 10 high schools in Frederick, if every school has 27 homeless students that is 270 kids without homes. 

I could go on forever about the injustices in the world. My heart breaks to think of a child going to bed hungry or cold and to think of a mother who is some day going to have to go on living when another cannot. It is very easy to get lost in the details of life and to forget the greater picture. Solace can be found within the grand scheme of things. You can celebrate little things and you should. 

Cameron didn't talk until he was three and a half years old. The moms in my local moms group were talking about their child's first few words...mama, dada, cat. I wrote down Cameron's first 100 words. We celebrated each and every one of them. The day he reached for me and said "Mommy" was one of the happiest days of my life. 

On Monday Cameron and Adam received Academic Awards at school. Both got the "Hard Worker" award, it isn't the highest honor at the school but it is recognition of their work. We sat through an hour of 5th grade awards, Kindergarten, 1st grade, 2nd grade then it was time for 3rd grade. All the kids politely stood, received their award and stood in the front of the auditorium with their parent for a picture. Cameron's name was one of the last names called in 3rd grade and when it was he jumped up and shouted, "WOO HOO! I DID IT!!!" He ran to the front of the auditorium and gave his teacher a big hug and a high five to the rest of the teachers. He stood on the risers with Rob and beamed from ear to ear and congratulated all the other 3rd graders around him. His 1st grade baby brother stood up and went to the front of the room and gave him a hug. Other parents tittered and giggled and I stood up and clapped for him so extremely proud of his accomplishment. 

I learn something every single day. My teachers are other mothers going through the same thing I am today, and other mothers going through more painful things than I can ever imagine. My teachers are high school students who want to lend a hand to a fellow classmate with only caring and not judgment. My teachers are my kids who celebrate with me every single step, word, award, and hug. My teacher is me, making myself take a moment to empathize, to listen, to help and to share. 

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)

Sounds like a post all about me, right? Nope, HA! I gotcha! In the end you will find that its a post about you too!!!! The title is a nod to my country, mid-western upbringing and if you don't recognize the refrain it's a country song by Toby Keith. Going back to the day I found out Cameron had Autism, sitting in the office and listening to the Psychologist give us his report then getting a second opinion locally and a third opinion in Baltimore there were some commonalities between all three doctors. Allow me to paraphrase, abbreviate and combine the general points they were trying to get across to me here: 

Your son has Autism, it has no known cause and no known cure. The rate of Autism is skyrocketing but no one knows why so there is no one and nothing to blame. Early Intervention is key, you've caught it early and we don't know how far he can go but be prepared, he may never talk, he may never have friends, he may never give affection and he may never be able to be alone. You will need to find therapists X, Y & Z to help him though Early Intervention, he will need special education, you will need respite from him and you will need to form a support circle for which to lean on. Ready, Set, GO! 

 And we took off at a sprint. Rob set to work making sure his current job was paying the maximum amount in his field and had the benefits we needed. It did thankfully, or he would have been job hunting. I started reading, reading, reading, calling speech therapists, OTs, special programs, scheduling our lives to the minute and getting irrationally and extremely frustrated when I didn't get call backs within hours or when I realized how few groups working with Autism actually took insurance. We spent our days going to therapies and groups, we spent our nights reading about Autism and working on the budget and calendar. What could we do to make more money, pay for more therapies, stream line the schedule, read faster, remember more, learn more, run faster, sprint, sprint, sprint. 

Here are some truths for you to do with what you wish. Autism is a marathon, not a sprint. Every book and doctor counter acts another book or doctor but no one book or doctor knows your specific needs and wants for your child. You will get burnt out. You will hate Autism. You will probably never think you are doing enough but hopefully you will know somewhere in the recesses of your brain that you are doing as much as you can and thats okay! Someone will ask you a question about your child that you cannot answer. You will get tired. Your desk will get messy and you will lose a piece of paper that is very important. You will value the gift of a new watch or smart phone far more than a diamond necklace (although it would be nice!). You will need a break and eventually you will learn how to take one. I could go on forever. Instead I want to offer advice to go along with these truths. Take the pieces you need and leave what you don't for others, either way I hope this is helpful.

On Acceptance of Autism: If you've gotten your diagnosis in the last year or so you haven't even had two seconds to think about accepting the diagnosis. It became fact and you react. Unbeknownst to you there is a cycle you are probably repeating, it is a cycle I didn't myself understand until our diagnosis was years old-- The Kubler-Ross model, commonly known as the five stages of grief. When I first thought about it I thought, "no way! I'm not grieving!" I may not have been grieving in the literal sense but I certainly was going through the cycles again and again, I'm sorry to have to tell you that even now the cycle repeats itself. But here's the key, the stage of acceptance grows longer. Initially I may have went through the 5 stages in a day or even a couple times a day. Seven (almost 8) years later, I'm up to going through the cycle every couple of weeks. It doesn't sound like much but its way better than what it was. (1) Denial: not believing the diagnosis, thinking he will grow out of it, using your strongest belief that you can make it go away if you work hard enough. (2) Anger: Autism sucks! I hate that we have to do X,Y,Z! Why do we have to deal with Autism when Suzie down the street doesn't even have to think about it? If it would just go away, our lives would be perfect. (3) Bargaining: If I read this book it will have the answers. If I change this, this and this it will be a miracle. I'm going to Google "Autism" today, I did it yesterday but there has to be something new today. (4) Depression: *sigh* nothing is working, nothing is ever going to work, I just wasted a day, month, year, on a pipe dream. How could I have wasted that time when I could have been doing something else for him? Why bother? (5) Acceptance: Someone once asked me if I could give Cameron or Adam a pill to take away Autism, would I give it to them. The answer is NO and that is my acceptance of Autism. Autism is a fundamental part of who they are and denying that part of them is denying their true self. Would taking away his Autism also take away Cam's quirky sense on humor? His love of music? How about Adam's drive to work on one thing until he has it perfect? I couldn't do that to them. Your acceptance will read differently and it should. 

On Marriage: There's a boy in my bed. I'm not talking about Cameron or Adam either! His name is Rob and he is in. my. bed! He's my husband? Oh! Yes, now I remember! The man I chose to spend the rest of my life with, the father of my children, now I remember. Yep, it happened to me. Did it happen to you? Is it happening to you? After our diagnosis he took off in one direction, his blinders focused on making money for therapies and keeping insurance. Overtime? Travel for work? Yes sir! I took off in another direction, nose in an Autism book, life scheduled to the minute, driving all over Maryland, learning, focusing, working, all my attention on Autism, on Cameron, on my newborn Adam. Then *BLINK* it's 2008 and we've been married 10 years, Cameron is 6 and Adam is 4, Rob travels for work about 50% of the time and you know what? I miss him. I was so wrapped up in my boys, standing strong against Autism, standing up for the boys' needs at school and within the community, being there 100% of the time for whatever needs arose at school and at home. I was tired. I needed someone to lean on but I had stood strong for so long, I didn't know where to turn to. Then I remembered, there's a boy in my bed. It was as simple as just being in the kitchen and leaning my head on his shoulder. He was there  and he caught me. He has never missed, catches me every single time I need to lean. What I didn't realize was that he needed to be needed. I had been standing so strong for so long that I had cut him out, I kept him up to date but I didn't share the emotions with him. So I was running around going through the grieving cycle, he is running around going through the grieving cycle and neither of us thought to stop and take second for a quick lean, a quick connection, a hug, a deep breath. We don't go through the cycle at the same rate or at the same time. Believe me it is an ugly time when we both accidentally hit the same stage at the same time and within the same state. Two people angry at Autism in the same home is never, ever a pretty sight!  

On the Care and Keeping of Mommy- Part 1: Someone told me I had to take care of myself. HA! It is but to laugh and I did. And I do. I do not have time to laze around and eat bon bons! Neither do you. But when I hit our 10 year anniversary I did make a big change in the care and keeping of myself. We went on a trip. Yep! We left the boys with my parents and because of all of Rob's traveling we went First Class to Las Vegas for a few days. Here's what I learned on that trip: (1) I not only love my husband but I like him (2) I like to read things other than Autism books (3) The boys needed a break from us and from the schedule just as much as we did (4) The trip was more of a vacation away from Autism than it was of a vacation from the boys. We missed the boys terribly, we thought about them constantly but we did not think about Autism-- not once. I have taken these lessons and expanded on them in the last 3 years and here is what I've kept with me. I like my husband and I want him to be happy and I want to think of ways to make him happy. Thinking about him is sometimes the break I need away from thinking about the boys and the diagnosis. I love to read, I love happy endings, not every book has to great literature and a lot can be said for smut. There is a reason romance books outsell all other books 5 to1. It doesn't matter what you read as long as you enjoy it. Words printed on a page is a wonderful way to escape for a few minutes and books (ebooks, audio books, etc) is probably the easiest thing you can keep with you for a break in waiting rooms, to relax before bed, to take a few minutes to yourself-- you can read anywhere and anything you read will give you something you didn't have before. 

On the Care and Keeping of Mommy- Part 2: Make appointments for yourself and keep them. Make your annual appointment, check the plumbing, do the lab work and take care of the follow-ups. When I turned 30 my one annual appointment spawned 7 follow up appointments: the lab, the neurologist, the dentist, the psychologist, the sonographer, the dermatologist, the chiropractor. I neglected myself and my doctor listened to my list of complaints and sent me out for follow-ups. She suspected that I was low in Vitamin D, needed treatment for migraines, was suffering from stress and anxiety, had gall stones, getting rosacea and holding all my stress in my neck and shoulders. She was mostly correct, ok she was dead on right for damn near everything. In the last 5 years I have been treated and released for migraines, I still get them but not as often now that I get regular adjustments by my chiropractor. She helps me release the tension from my neck and shoulders. More recently I also schedule 30 minute massages every few months to work out the knots even further. My dermatologist did diagnose me with Rosacea and it is complicated by stress, when my stress level gets too high you can read it all over my face-- literally. I had my gall bladder out because it was beyond repair. I was low in Vitamin D and I have to take extra every day. I did go to the psychologist, quit, found a new one, quit, and found a new one. I took pharmaceuticals for stress and anxiety that put me to sleep for months, then added in medication for depression that did nothing. I was mis-diagnosed and only recently found out that I do not have stress, anxiety or depression, I have Attention Deficit Disorder. Really? Yep! Shocked the heck outta me too! Apparently I could control my ADD when faced with typical stressors but when you add in a traveling husband, two boys with Autism and everything that comes with it I get so overwhelmed that I cannot function. I still see my psychologist for what I call my "sanity checks", she helped me figure out that I had ADD and now she is helping me through the medication trial that goes with it. So far Adderall has got me back on track and I'm accomplishing more than "Autism stuff" for the first time in years. 

Okay. So I never intended this post to go on forever! It probably should have been many different posts and in talking all about myself I am hoping that I was also talking about you too. Hopefully you found yourself nodding, smiling and even laughing a bit while reading this way way too long post. And hopefully you will remember occasionally to think of yourself a bit, your journey, your leaning post, your interests, your knowledge. Sing a long with me.......

I wanna talk about me 

Wanna talk about I

Wanna talk about number one

Oh my me my 

What I think, what I like, what I know, what I want, what I see

I like talking about you you you you, usually, but occasionally 

I wanna talk about meeeeee

I wanna talk about me