Add this to the Autism list

Ok, so Jackson has his quirks, his tremors, his own unique and sometimes strange ideas about whatever the subject may be at the moment. I get it. Sorta. But none the less I still get it. I am patient (mostly), I am kind, I try to be loving and understanding, but there is one thing that I CANNOT stand!

WHY WHY WHY WHY WHY ON EARTH DOES MY CHILD LIKE TO LICK FEET?????

For the life of me I do not and cannot nor will I ever understand what is entertaining funny or appealing about licking someone's feet. I mean what! I just don't get it. It's gross, it's disgusting and yet he finds it hilarious. Why on earth anyone would want to lick, touch and really even look and study feet?

I guess it's just another mystery of what's really going through his mind. Having a child who is autistic is like the eighth wonder of the world. You don't know how it happens. It's just this mysterious thing that is just out in the open but no one can seem to give any one real explanation, only ideas and "medical" reasonings. You don't always understand why things are the way they are and I really don't understand his thought processing when it comes to all things autism. 

The whole foot licking thing is just another one of those things I'm not sure I'll ever understand but I guess it's just another small thing in a big picture. I only wish I knew how he can be so focused and obsessive on some things (feet) and then other things I want him to be able to focus on-likes school work, he can't. Getting back on my trail of searching for tools, resources and help groups I'm full steam ahead again no matter how hard it is. On top of ADHD and focusing side of things, we're starting to talk school plans for next year, new therapies and more evaluations to include a neuro-psychological eval and behavioral therapy suggestions. The behavioral part comes in because as sweet and kind as my sweet little hugger is, he can also have a polar opposite side and when that rears its ugly head, Jackson can become quite aggressive sometimes. 

In an effort to protect him, our family and anyone he interacts with I feel like the behavior therapy is the next big thing on our list to get started. By no means do I think he really wants to hurt anyone intentionally, I just don't think he always fully understands there is a line you can't cross. He doesn't understand that just because someone calls you a name it's not a personal attack. It's just that the kid calling you a name is just that... a kid. Just a silly kid doing silly kid things. They don't really mean any harm of course, but Jackson's perception is that he is being attacked and so good or bad, he reacts. Try explaining that one or being in a public situation where people have no idea who Jackson or anything about him. Yet they judge and stare because of his actions. Sometimes, well a lot of times that is a hard thing to deal with friends. It's uncomfortable and it's hard to know if the choice you make in that moment was the right one or the wrong one. Not that I care what anyone thinks, because I don't. My concern is am I making the right decision for Jackson at that moment. Anyone have the answer to that million dollar question? 

Taking one things about an hour at a time, I'm continuing on and putting one foot in front of the other.

But for real if he licks my feet one more time.... 

~EM

Results Minus the Results

It's a chilly Tuesday. It's about time it felt a little more like ole man winter around these parts. (that makes me sound slightly country/ borderline heathen doesn't it? ha) Wanna know a secret? It may come as a shock, but I am developing a serious LOVE-HATE for doctors. I mean don't get me wrong, doctors are wonderful people who save lives everyday, but by golly they can't answer a phone to save their LIFE!!! Secret number two.... I have more test results for Jackson. Yep those ones we've been waiting on since ohhhh about 2 months ago. Good thing I've had Halloween, Thanksgiving and a few blog posts in between to keep my mind focused elsewhere.  

I am finding myself extremely frustrated today. Why, I don't know. Maybe it's just "one of those days". And quite frankly, who cares right? Since when is every day peaches and cream for everyone? If you are one of those people who claims to never have a bad day, stop lying to yourself, we all have a bad day. I feel like a little hamster on the wheel. Running and running, but that darn wheel isn't going anywhere. Hamsters have to be the most frustrated little creatures....

In case you are not fully on the spinning hamster wheel of Jackson's testing, I'll quickly recap. So far, we've had speech, hearing and language evaluations (more on that here) and vision testing. The second set of  OT tests includes the DP-3 (more on that here), Fine Motor Assessment and a Sensory Processing Disorder (SPD) evaluation. Still to go, Psychological evaluations and testing for Asperger's (which is a form of autism), Autism (all ASD forms), and ADHD. My goal in all of this is to hopefully have some firm answers for my little superhero, by April 2013. Just in case you are wondering how long all this takes, April will make 9 months of actual testing and about a 15+ months total of waiting lists and appointments to get some answers (not to mention our previous years of wondering, but hey, who's counting right? haha). Jackson will be just a few weeks shy of 7 by then. If your are a parent out there and you think you are a similar journey, or should begin down the same path for answers, get your rechargeable batteries, you'll be on the "spinning wheel" for a while, but don't ever give up on your little person! I firmly believe that their future depends on your actions today, so whatever you do, don't let that wheel stop turning for them, no matter how long you have to keep it going.

So on to the meat and potatoes of results. 

Jack's results today are the full Occupational Therapy evaluation to include the Fine Motor Skills Assessment and Sensory Processing Disorder. Are you still with me or did I lose you at chilly Tuesday? Ha. All these tests and details and foreign language medical terms can be a bit overwhelming, trust me I KNOW.

Without going into too many details and because I don't think I need to blast Jackson's every area of concern, I'll just recap the areas of testing and results. As you read these, should you find yourself thinking internally: "what does that listed medical term mean?", well... Google it friends. Here we go...

Motor Skills Testing:

• Musculoskeletal Observations
• Fine Motor Skills
• Visual-Motor / Visual Perception Skills
• Oculomotor Skills: 
• Tracking-results: within normal limits (YAY!!!!)    
• Scanning- results: needs therapy                    
• Convergence- results: impaired 
• Accommodation- results: needs therapy 
• Divergence- results: impaired
• Additional Visual Information
• Self-Help Skills 

Sensory Processing Disorder Testing: 

• Sensation Seeking
• Auditory Processing
• Visual Processing
• Tactile Processing
• Vestibular Processing
• Oral Sensory Processing
• Cognitive Skills

And so for all those areas of testing came these results: Occupational Therapy (OT) should begin in January 2013 for Jackson, with a re-assessment scheduled at the end of the school year to observe for improvements. Jackson should also be involved in social interaction group and/or a sensory processing based play group or camp. 

The the most important line on the whole darn report, MD (medical diagnosis) and here's what it says: 

MD:____________________________________

What? Huh? Nothing? What the.....? Okay, what does blank mean? Is this a bad joke because it's definitely not funny. Does that mean there is no diagnosis, yet he needs to have OT sessions? Does that mean we can rule out Sensory Processing Disorder? Does that mean there will only be a diagnosis after more tests? How can you go through all these tests and things for the most important line to be BLANK!!!! I mean if he doesn't have a diagnosis, fine. But write something on that line to say one way or the other. All those results with no real result!?! Ugh! Maybe my frustration today is starting to make more sense. I have called at least (no joke here...) 20 times to ask about this. 

Of course we will be at therapy this week, so I plan to pin SOMEONE in a corner til' they answer me why that little line was blank, so stay tuned and hopefully I'll be able to fill in the blank! 

I guess I can add this to the "speed bump count" on Jackson's journey. But don't worry, I'll get my answers. In the meantime, the plan is to start OT for Jackson at the beginning of the year and hopefully get scheduled for the psych testing next. 

Since that all important line was blank and I'm rather frustrated today; I'll just fill it in for them... 

MD: Milford Done

~EM

Frustration, Spilled Milk & a Side of Gangnam?

Sometimes you just have to get it out. Today is one of those days for me. (I'll go ahead and apologize for the small pity party I'm throwing here) Jackson is still sick, day 12. I think a 4th trip to the doctor is in our future tomorrow morning. Poor baby. Whatever this "virus" is or isn't is really throwing him for a loop and a half. And if I am being really honest and candid, I'm SO OVER THE SICKNESS! Not only for him, but selfishly for me too. I'm tired. I want to pull the "I want my Mommy" card, too!  

After a long week of leaving school early for multiple days, missing school all week last week, a lot of sleeping and not a whole lot of eating, I am really starting to worry about my little man. We had therapy tonight and I guess I shouldn't be surprised but we still don't have any more test results even though they were ready before Thanksgiving.  UGH! The "printer" has been messed up at EDFTC or so I am told. I'm sorry but where is the customer service?? I have begged for them to just fax it, email it just any way they can come up with to get me these darn results and still nothing. Oh well, there's always next week, I suppose. Jackson's session didn't go very well today. I could hear the frustration through the door as he was trying to work on his speech. I guess I wouldn't have much patience if I didn't feel well either, much less on a Friday. Feeling helpless, I listened on the other side of the room as my poor little guy struggled and was anything but interested in focusing on his speech. Cutting his session 20 minutes short, his therapist Ms. Courtney opened the door and said he had reached his limit today. 

Game over.... Therapy-1, Jackson-Zilch.

As we continue on our journey for answers, I'll share some of Jackson's "habits". Frustration is putting it lightly for Jackson when things are going "according to plan" for him sometimes. If he spills even one drop of milk, he wants a whole new glass and the world is coming to an end. He has cried and cried over  his spilled milk, multiple times. So much for the saying "no use in crying over spilled milk" huh? He also tends to process things differently. You know how people ask you "If you could be anyone for a day who would it be?" I would want to be Jackson. I wish I could walk a day in his shoes, see his perceptions of how the world turns and really experience things the way he does. 

Often times he becomes very obsessive over things like movies, commercials, the weather, certain iPad games, etc. I mean really... if there was such a thing as the Jim Cantore School of Weather, I would have earned a degree in Meteorology by now! He is also very analytical, which I find interesting. He likes puzzles and he's really good at them. He likes to know how things work, taking them apart and putting them back together, things like that. He's very interested in, surprise... the weather, sports and scores and who's winning or losing. He' also critical when he thinks sports teams/players don't do well. He's very quick to say "they didn't do good, or they need to try again or that was a bad shot" and seldom is he interested in anything but winning. He doesn't understand the concept of losing. He can't lose at anything or there is a guaranteed meltdown. I think he ponders about how technology works. He's very good at using technology too, just ask my Apple iTunes account how easy it is for a six and a half year old to get past a password and buy apps. (cue the OUCH to the ole bank account)

He's also very in-tune with sounds or select words and repeating them, a lot and at totally random times. Like theme songs in commercials, just think "ba da ba ba ba, I'm loving it" from McDonald's. Phone numbers from ambulance chasers, I mean lawyers on tv. For all you Memphians out there....trust me, if anyone ever needed Nahon, Saharovich and Trotz, Jackson could recite Corey B.'s # on command!  Guess that "catchy" advertisement of their phone number is working for at least someone, lol. 

I could go on for a while about obsessions that he has, because there is a laundry list of them, but the last one I'll talk about tonight and perhaps the most hysterical to me is Gangnam Style! O.M.G. I mean, it's really quite funny. Don't even ask me how many times we have watched that You Tube video because I'll never admit to the actual number. I'll just put it this way.... he has watched that video enough to LEARN all the words and dance moves on his own. Now he's no prima ballerina when it comes to his dancing skills, but in his mind he thinks he's on Dancing With the Stars. I even caught it on video....hehehe!!!!

Don't judge my messy den of kids homework, toys and junk. Sometimes you pick your battles so cleaning that day wasn't at the top of my list (sorry). I'm sure this video will go on the list of "I can't believe my Mom did that to me", but I love to capture him in all his happy moments of glory and feelings of accomplishment! It's also "good Mom code" to have embarrassing moments of your kiddos right!?!

After a long week and an unsuccessful therapy session tonight, I'm looking forward to getting up our Christmas decorations this weekend and crossing my fingers for a healthy boy.

TGIF

~EM

Good Things Come in Small Packages

Happy Thanksgiving eve! My mind has slowly started migrating towards "holiday mode" and man am I ready for the break! Since Jackson didn't get to go to school all week this week, (thank you viral infection) his sweet teacher sent home a small care package of all of his projects for Thanksgiving. We  have an abundance of cutsie art goodies including a pumpkin, a handprint turkey placemat, a headdress and Indian t-shirt,  complete with his Indian name "Cow Jackson" on the back (I have no idea where he came up with that one LOL) and maybe most importantly, his vision screening results from LeBohneur. 

My husband (God love him) is pretty much a blind bat without his "eyes" otherwise known as contacts, so I was expecting the possibility of glasses in our future for Jackson. Much to my surprise however, he is 20/20 in both eyes! Whoooo! I know that sounds so simple and maybe somewhat silly, but since we are racing the Indy 500 of tests these days, these are the first "test" results that we have back that have been different than what I expected and we'll take it! Our OT results are in as well, but I still don't have a copy of those (go figure) so I'll be on the edge of my racing seat until Monday for those results.

As we ski down the slope to being fever free in our house, (YAY!) tomorrow I plan on devoting my entire day to being thankful for relaxation and hugging the necks of family members that we haven't seen in a while. Good food, laughter and love.... that's what I look forward to this Thanksgiving. Wishing you all a wonderful Thanksgiving holiday weekend! I'll be posting.....

I can never have too many kisses from this little man!

Cheers!
~EM

Hanging. By. A. Thread.

Ahhhh therapy... I could use some therapy of my own right now. Let’sjust say that my morning did not get off to a good start. Chaos was running rampantthrough my house and guess what? It wasn’t the kids causing the chaos today. It’slike nothing was in the normal place, no one can find their shoes (even thoughthey can only be in so many places), dogs are on my nerves for whatever reason…you get the point. You know you just have those days that nothing goes asplanned? You wake up, all is great, then little by little you just hit thedownhill slope to having a “case of the Mondays” on a FRIDAY!  Not to mention I was on the way to dropJackson off for school and then – SPEEDING? I am doing 25mph!!! How is thatspeeding…. Well it is in a school zone. DANGIT! So then that makes Jack latefor school, me late for work and my Friday is really off to a crappy start. Notto mention I now have a mandatory court date right before Christmas. JuuuustGREAT. 

So moving on, we just got home from therapy and I have more of Jackson's test results back! I have to say, honestly...... today I am struggling a little bit, ok a lot. Today is a hard day for me as a Mommy. Getting results is great! Seeing results makes everything very real. So real, that I am not going to post them tonight. I am completely drained. I need some time to let everything sink in. I need some time to unwind. So tomorrow I will post the results from today's session.  Until then, TGIF! 

I am going to curl up with my kids, hold them tight and say GO GRIZZLIES! 

~EM