It's Out There, Sorta...

For those of you who read my blog, it's out there, you know about Jackson. You read first hand my take on this experience. But there's another side of the story. A whole other side. Other parents. Other peers. Namely at Jackson's school. I'm not sure anyone there knows except his teachers and some staff. As for the rest of the gang in his class... not so much (I don't think). Is there a right time to tell? How do I tell? Do I even tell? Will it spawn whispers in the corner? No. That's not what I'm worried about. I'm not really worried at all actually. And I don't think anyone will judge him at all. But it's not like I can send home cute monogramed postcards to all the kids to deliver the message either. (Can you even imagine getting that message on a postcard???)

The golden questions still remains. How do I bring them in on the situation? I have mentioned before that we have every intention on Jackson staying at his school so long as he is accepted, progressing at a good pace for him and successful. I think he will be. But with that, part of his success depends on the people he is around, his peers. He spends just as much time with his school mates as he does with us, so it's important that everyone knows. Not because its a reason to treat him any differently, just more so they can understand him and be part of our support team, just as we support all the other kids the same way. I know other parents have to see his differences. But maybe they don't either. Just when I think someone might get a hint, I can't be sure. And taking a step back to put things in perspective (I do that a lot these days), if I were in their shoes and I noticed anything, I wouldn't know what to say or ask. Honestly, I probably wouldn't even want to ask for a fear of upsetting someone's feelings or sticking my nose where it doesn't belong. 

I have learned through this entire process that we all react differently to things that affect us both directly and indirectly. And that's ok. I used to be so quick to judge and think that people didn't understand or get what I was trying to tell them, which is hard to admit. The truth is, they didn't react the way I wanted them to. Cue the perspective... hello Ericka! It's not about how YOU want people to react. It's about allowing other people to take in information and process it for themselves and accept that people need time to be accepting on their own terms. Can we say Oprah Ah-ha moment!?! 

My mission now is to connect the dots. Connect Jackson's autism to the other parents and students at Jackson's school and understand that it's going to take time and a whole slew of "reactions" before everyone can fully understand. Of course I think we will be supported, of course I think they will still love my sweet Jackson just the same, but Jackson also affects the other students as well. It's not all just about Jackson. I have to think about that. I don't mean that in a negative way at all. He will teach them and they will teach him. But there will be times that he will not have the same reactions to his peers. There will be times he gets frustrated with his school work and may act out. There may be times he will be overwhelmed and need a sensory break. How do I know that? Because I we have been there, done that, got the t-shirt folks. 

Although I'm still not sure how it will all "come out" to everyone I'll just take it one step at a time. I'm going to talk to the school and maybe reach out to some support groups for advice and ask other parents who have been down the same road as us. I'm also open and all ears to anyone with advice on this. As my little monkey teaches me something new every day, he has definitely taught me to think outside the box of acceptance and comprehension. No one ever goes from A to B the same way, we take our own path and share our experiences with each other. That's how we learn, that's how we process, that's what makes us who we are.

~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

You Can't Have That

Ever heard the words "you can't have that"? It's like finding the perfect pair of heels only to flip them over and see just how many 00000's are behind the $ sign on the tag. Shattered dreams.....

So okay, you recover and your on to the next thing. What about repeatedly being told "you can't have that"? That's a whole other story. It's hard enough to process things you can't have (for whatever reason), let alone when you process things a little differently and are told those 4 yucky words. Which leads me to my point. Yes, there is a point here. Ha! I know there are tons of allergies out there with our kids, our own allergies, etc but do you live with one? Do you stare at food labels and read them like a hawk? Well, I do. 

Jackson is allergic to tree nuts. What are those.... well anything like your pine nuts, walnuts, almonds, cashews (especially those little half moon suckers!) and others. But he can have peanuts (for now). Anything that can potentially contain tree nuts, he cannot have. If you have ever been to an allergist you know that little porcupine looking gadget that poke your back with?? Yeah, it has traces of the elements on it when they are testing you for an allergy. Jackson blew up like a balloon before the nurse could even get finished and get out of the room. Cue the epi pen epidemic!!! We have SIX of those suckers! One at school, one at home, one in my purse (always), two back ups, and one that travels in an overnight bathroom bag in case he spends the night anywhere without me and John. 

We figured out this lovely "allergy" a couple of years ago, thankfully at a graduation party for our friend Patrick who just so happened to be graduating as a NURSE! So lots of medical people were on hand at the time we tasted the lovely cashew that caused Jackson to blow up like a balloon. He didn't even look like himself he was so swollen. Long story short here....luckily, with the medical folks there, a police officer and a whole heck of a lot of benadryl, we had him under control pretty quickly actually. (Mr. Cop was trying to pull me over for speeding down Poplar in Germantown, until I rolled down the window and he saw Jackson's face and became our escort instead, hehhehehe I won that one Mr. Po-Po!). But seriously, whew! 

Looking back on that night, it was really scary to see him so swollen! But now we check everything. I had no idea how many foods are made with tree nuts or manufactured in places that touch tree nuts. RIDICULOUS. Especially the good stuff like cookies, muffins, cakes, etc. So last night we were ready to make some cookies from our cookie dough I ordered as part of a school fundraiser. Then I read the label. Yep, you guessed it.... so I delivered the news to Jackson that we can't make those cookies because they have tree nuts in them. Commence breakdown. Hurry Mom, plan B, you need a plan B. Ok, other cookies. No other cookies in the house (of course not, that would be way to easy). So with my crying little man, I offered for us to make muffins. Which I'll insert here, DARN you Hostess! They were pretty much the only ones with the mini muffins pre-packaged without tree nuts! So, I got some other muffin mix sans tree nuts so we could make our own. I offered to let Jackson do all the mixing and make his own. Problem starting to divert! We are working with him on his adaptive behavior skills (you can read about that  here). So I thought if he could try to make these on his own he would feel a great sense of accomplishment, have something sweet to eat, and it's even better for you than cookies! I've lost count on my win win's with this one. LOL

To most kids making cupcakes, etc is cool when you are little but as they get older they are just more interested in eating them, than the whole baking/kitchen labor part. But Jackson was so excited to make his muffins last night and I let him do the majority of the work on his own! He only got upset once or twice with the mix "missing" the mini cup on the pan. (he likes things neat, not outside the lines, so muffin mix on top of the pan will not do for him) But I gave him a napkin and showed him how to clean it up and try to move on and not "obsess" over a little spill. He did pretty good with it! He even set the timer on the oven (he's obsessed with the "countdown" of timers) and then put his hand in the oven mit with mine so we could take out the muffins together. I gave him a toothpick to "stab" the muffins so he could get them out of the pan without burning himself and put them on a cooling rack. 

Super excited and so proud of himself he asked to call Grams (aka my mom) and tell her all about them. (He rarely asks to call people on the phone and usually has to be prompted or helped with his phone conversations on how to respond, so the fact that he wanted to call was so awesome!) He was so happy that he had done it. You wanna know what making muffins really means in Jackson language? That means with a lot of practice and help, he has the will to do better. That means he understands what it feels like to succeed. That means my little monkey can improve in everything he does and there is no limit to what he can do. Of course it takes an entire post about allergies, muffins and yelling at Hostess to get me to the "read between the lines" message here, but my point is just because "you can't have that" doesn't mean you can't have something else that's even better that what you wanted to begin with.

Hanging my hat on a HUGE hanger of success for this one. And my little superhero being super proud of himself... I can't do  much better than that. 

~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

Memphis- Birthplace to Bon Qui Qui? Huh?

I know you are wondering what the heck is this post about??? Well... as I am STILL patiently waiting for more of Jackson's test results, (there's always tomorrow huh)  tonight it's time for a post with a little ehhhh light-heartedness. Soooo here we go.....

Often times with all the stresses going on from day to day, I search for the little things that keep my mind clear, make me giggle like a school girl and maybe contribute to my sanity in some small way. After all, you do burn calories from laughter and I can't remember anyone that just loves to be around a scrooge, right? I'll admit I am a junky for all things funny from movies, to SNL, to completely obnoxious cards I can send for holidays and birthdays. (sorry family hehehe) But my huge weakness you ask? YOU TUBE & HULU. Good grief I could laugh at ridiculous skits and "wanna-be superstars" in terrible video clips all day. It's amazing the things people will post. Some hilarious, some not so hilarious and then there's always that ONE video that has to be somehow related to home.....Memphis. 

Known as the birthplace of Rock and Roll, Memphis has produced it's share of mega superstars like Elvis and Justin Timberlake along with our great city name  being "name-dropped" in  more songs that any other city in the world! (bet ya didn't know that tid bit did ya... if you did, humor me and act like I taught you something today ok?) But of all the great history and musical artifacts Memphis has to offer, we also have a small reputation of being labeled as ghetto? At least from outside this great city. And is word ghetto even cool anymore? Well, you get the point. Now don't get me wrong, I've had my share of uh um how do you say it...interesting experiences (yes that's a nice way to put it) for the last 10+ years I have lived here. Which leads me to this chick....meet Anjelah Johnson aka Bon Qui Qui. Funny, somewhat ghetto and guaranteed to make me laugh every time I see one of her comedy skits. What I didn't know is how Bon Qui Qui came to be... until yesterday! The short clip below recaps her experience of being at, yup you guessed it, a MEMPHIS Burger King drive through. 

Between that "drive through gal" and her brother (I'm guessing he's a hoot) Bon Qui Qui was brought to life. HA! What!?! Who even knew Bon Qui Qui stemmed from something and someone that was actually real in little ole Memphis, TN.

For your viewing pleasure and maybe a few chuckles, I hope Bon Qui Qui makes you laugh and appreciate all the "characters" you encounter. Funny things like this remind me to never take myself too seriously and give thanks to all those that contribute to my well being from a good daily dose of laughter! Providing Memphis history and a cheap laughs, hmm not too bad for a Wednesday! 

So funny and maybe a little ghetto-fabulous! LOL

~EM

Going Out With A Bang!

Yay for Saturday! Ummmm, why is the weekend going so fast? I hope everyone had a wonderful Thanksgiving holiday and time well spent with family, too much food and maybe a libation...or 10 HA! So recapping Thanksgiving, we drove over to John's cousin's house for the day and spent the day playing whiffle ball (yes, we have enough family to make two full teams and fans to cheer us on), knock-out, bocce, corn hole and eating pretty much all day long. But we had so much fun getting to visit everyone. John's Aunt Terry was campaigning for cash to go buy scratch off lottery tickets, which I thought was hilarious and "worth the mention". Ten years from now, this will be funny as hell to look back and remember her walking to the gas station with about $50 of donations, a couple of kids under the age of 5 and a handful of lotto tickets. Have I mentioned I love this family! Never a dull moment and I would NOT change a thing! I'll tell you, I had planned with the best of  intentions on taking all these great photos on Thanksgiving and posting them for the family and ask me how far I got with that???? Absolutely nowhere would be the answer. So FAIL... just put it on my tab. As a matter of fact, these were the only pictures of my own kids I got! What kind of Mother am I? Thankfully... John's Godmother to the rescue! Ginger took lots of photos and is going to send them to me soon! Whoo! 

                                                    

So obviously as you can see above, Thanksgiving was winding down and we were on to the next thing. I feel like we have been running the 100 meter olympic hurdles all weekend! Friday was spent doing very LITTLE black Friday shopping mainly because I am an online junky shopper. Seriously! I need an online shoppers support group ha! But I'll argue my case for a second and say, when you have two kids that have minimal attention spans for comparing "this to that" for Christmas shopping, they don't last very long! I know all you parents can feel my pain here! And on the flip side I can shop online ALL day long and they can play at home. It's a WIN WIN people!!!

The monkeys had finally started to get over the "funk" we have been fighting all week (praise the LORD), so last night we decided to head to the zoo to see Santa and the Zoo Lights (kinda becoming a cousin tradition) Even though we were missing a couple of cousins due to, ehhh sickness is a good way to put it. 

Disclaimer*** Secretly we take the kids to the zoo lights to see Santa because we all get a great LAUGH out of the terrible face that someone always produces from seeing the big guy in the red suit. It's like a cheap thrill for the adults HAHAHA! And boy this year was no different. Miss Ella delivered like a champion! (See terrifying face below as I giggle)

Ha!!!!! I'm so sorry but this picture is hilarious and worth a thousand words. Auntie Ericka loves you Ella!!!! So with the terrifying pic, here's a few more of the fan with "happier" faces. 

Big Christmas tree at the Zoo entrance

Hallie and Ryan, best friends! 

Joe and Kristen

Me and J :)

Jackson and Ella tuckered out!  

Checking out the tree!

Sweet smiles, but double trouble!

Today we are headed to Maryn and Annie's baptism along with a little football later tonight. Go Irish!  Rounding out our weekend, I'll make the extremely fast mention that today is my last day in my 20's! Woah and yikes!!! Good thing I fully loaded the weekend with lots of great family time and love before I celebrate the dirty 30 tomorrow LOL..... Oh well, what is it they say, 30 is the new 18? Ok, yeah I'll go with that. Mentally I feel about 12 most days, so that HAS to count for something right? 

What a blessed and great weekend we are having so far, my cup runneth over!

Going out with a bang... goodbye 20's, hello older and wiser! (HA, yeah right) 

~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

Finding Peace....Giving Thanks

Today I took the monkeys to the doctor to see if we can try and kick the sick. Two hours later and a finger poke or two and we have a nasty, make that two nasty viral infections. Yummy. As they were sleeping today, I was working to with the lovely sound of two little chainsaws buzzing heavy at work. (ha) At least they were sleeping together though. 

Poor pitiful babies....(yes, I took them to the doctor in their pj's don't judge me)

           

 

As far as results go today.... SURPRISE! A whole lot of NOTHING. Wah wah! Don't be too shocked folks, medical test results and their timing are like weather forecasters. Always predicted but hardly accurate. Sooooo until tomorrow for more results I suppose (and hope). I have only called harassed them twice today anyway. I might have to start hitting the *69 or whatever that code is so that my phone number won't show up so they'll actually answer me because I think they have memorized my number. I'm sure they argue over who will have to answer my call "this time". HA! 

As a pretty eventful or ummm uneventful Monday at the Milford house winds down I do have some sad news to share. This afternoon I was catching up with a dear friend, to be told that another wonderful and dear friend that I have known for many years has passed away. Yesterday would have been his 30th birthday. He went to sleep and simply never woke up. Hard to believe and shocking for sure. I have to say after I got off the phone today, I had to call my Mom for a small breakdown and lots of tears. How lucky are we all to have each and every day we are blessed to have? Pretty lucky and fortunate I think. I only hope my dear friend is resting peacefully above and that his family is finding peace through their all too soon loss of their son and child that was loved by so many.

So in his honor, I give my thanks and offer peace and love to my friend that will be missed dearly. I am happy, grateful and thankful to tend to my sick peanuts and because he always made me laugh and smile.... I'm thankful to obnoxiously cheer from my couch as the Grizzlies hopefully fry the Nuggets in tonight's game. Don't take your days and loved one for granted!

Life is not measure by the number of breaths we take,

But by the moments that take our breath away. 

                                      -Anonymous

Rest in peace my friend. I love you and know you have gone to a far better place. As I cry....

~EM

What's Your Age???

Hello loves! Yesterday was not the happiest of Fridays, but as always tomorrow is another day and today has been great! Hallie and I have been to a make-up open house (yay) we went to a crafts fair at our church, we are making Christmas lists, watching football and playing games with the kids. In other words a good family day for a Saturday. This weekend is the first weekend in a VERY long time that we have not had anywhere to be or anything to do. Can I get a hallelujah!?!

In other news, we have more test results. Long post here, so grab your wine and read on.....

Finding the words at this moment is hard. I feel as though I have a case of writer's block in trying to get the words out - even though what I have always known has now been confirmed on paper. Make that NINE pages of confirmation. (I am now starting to see why it takes so long for these tests and the results) 

So, on to (or back to), October 24th....another testing day. We started the process for Jackson's Occupational Therapy (OT) assessment with a parent interview, the OT therapist doing an interview with Jackson and then the actual testing. I also had to fill out a profile for Sensory Processing Disorder (SPD) and Developmental Profile Test (DP-3). And by fill out I mean FILL OUT a profile. You know when you buy a house and it's closing day? Yeah... imagine that stack of pages as you sign your life away only apply to a six year old for testing. I guess I see it as another signing day to "buy" a better future for my sweet Jacks. I thought I would NEVER get through that packet!!! I could have published a documentary of Jackson's life there were sooooo many pages, ha! But again, all so worth it if we can get to the light at the end of ever so dark tunnel. 

So, testing begins... I didn't get to go in for this test like I did for the speech, language and hearing tests. Instead, I got to sit and wait and watch the clock tick by. OMG!!! My nerves were shot and that hour and a half seemed like eternity! (I swear, paint could have dried faster that day) The testing was finally completed, I did my interview part and we left. Ms. Jackie (our OT) said she would have the results back to us in a couple of weeks or so. My interior monologue kicked in...."Weeks? Really? Ugh!" My response out loud was a little more cheerful and along the lines of: "Ok, thank you so much for seeing us and we'll see you soon", along with a grateful sigh of relief. Another set of tests to check off the list and the waiting game begins yet again. Anybody wanna contribute to the "Ericka needs to buy more patience fund?" LOL 

Finally on November 13 (almost 3 weeks later, yes I counted) and we have some results. I thought I was ready....I mean I was ready....I mean I really wasn't ready, was I? My head was a wreck, my heart was pounding. So I get the call, get a few results, continue with my night with nothing really "hitting me yet" and we were scheduled to get the "hard copy" of the results on Friday, November 16 (yes that would be yesterday... and in case you missed how great my day was yesterday, you can read it here). Jackson had speech therapy as usual last night and meanwhile, I had hard, down on paper, pretty (or not so pretty) graphs and charts, recorded results. In Jackson's case, we are doing a series of tests for a multitude of things. I have the results for the Developmental Profile (DP-3 Test) so far. The rest of our results will come on Monday or Tuesday (or in medical time, sometime in 2013.. HA!)

I'll give you the easy to understand run-down as usual. The DP-3 tested Jackson for the following..... Physical Development, Adaptive Behavior, Social-Emotional Development, Coginitive Development, Commincation Development and then  General Development (this is like a composite score of all the other tests combined)

The easiest, most understandable terms I can put these results in is to say that for each of these tests, they give you an "age range" that your child falls into for each test and then an overall General Development Diagnosis. So I review the results: 

            Tests:                                                                                                 Age Equivalent:

Physical Development (carrying objects, jumping, etc.)                                           3-6
Adaptive Behavior (i.e. how make a bowl of cereal, daily life habits, etc.)               4-5
Social-Emotional Development (expressing needs, interacts/plays with others)    3-10
Cognitive Development (what's real/not real, memory, etc)                                     4-2
Communication Development (verbal/non-verbal skills, etc)                                    5-1

Ok, the first one- physical development- ages 3-6? That's not too bad right? Keep in mind he is now 6 years, 6 months (yes they record the months when they test) So I thought the age range of 3-6 was kinda wide, so I asked about the range. WRONG. SO WRONG. 

That was age 3 years dash 6 months. (Cue, my nervous stomach falling from my throat to my FEET!) I know the look on my face had to tell it all. I was shocked. Jackson turns 7 in May and as you can see above, each test score is well below the age of 7. He's 6 and a half and physically 3 years and 6 months? Woah. I almost for a second couldn't wrap my head around that. I wasn't expecting it to be that bad low for any of the tests. I honestly thought his communication would be the worst and it was the best! Phew! Need a deep breathe at this point. You can read the rest above as the same... the first number is the age in years and the second number is the age in months. 

So for his General Development he is: Developmentally Delayed (by years in every category). I knew it, I just hadn't seen it. Seeing it makes it all come full circle. It's hard now to even type it all down. I needed to just take it all in yesterday before I shared it. And although this was the outcome for this test, I don't really want to cry. I want to FIGHT. Fight for him to do better and improve. Fight for him to develop more and more every day. Clearly, we have a ways to go in working on Jackson's development, but we will get there! We have a plan to work on at home, therapy and school for the next 6 months and the DP-3 test will be done again to see what kind of improvements we are making. And he will improve! I firmly believe that. I am still letting all of this sink in and still not sure if it has completely hit me, but we'll continue on the path of nothing but success. There is no room for anything but improvement for Jackson and I won't settle for anything less. 

As it all sinks in...... 

~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

Lean for Love

I'm starting this post by saying first thank you. Thank you for taking the time to read our story. Thank you for being supportive and thank you for showing the love you have for others. People never cease to amaze me. It's amazing how people can be so giving to those they care about, love and sometimes even complete strangers. And I embrace all of you. I feel like I have always been a very giving and loving person to others in my life and others that I don't know, but it's nice to know that when I need the love, I feel it. The last 24 hours have changed my life. I have received more emails, phone calls, texts, Facebook messages, post comments and tweets than I can even count. People sharing their stories with me, sending love and encouragement, sending prayers, tears and most importantly support for Jackson! Not to mention, it's nice to know you aren't alone.  

Yesterday, coincidentally was John's mother's birthday. She would have been 57. And although I know everyday that goes by he misses his mother (maybe more than anything in the world) I know she is with us. I have no idea where my courage came from yesterday to all of a sudden think I am strong enough for all of this, but I'd like to think our Angel Peggy had something to do with that. I never got to meet the woman that my husband called "Mom" but I hear she was one AMAZING lady. What I do know is the kind of children she raised and the things she instilled in them before her she left the Earth for a better place. I hope that I can give that kind of love to my children like she did for her kids and any other children who's lives crossed her path. It has been over 11 years, but her presence is still felt by so many people today, that I can assure you. I firmly believe she watches over us and I think that sometimes she gives me the extra push of strength when I need it the most. I only hope that I would have made her proud. Weird how things in life line up sometimes isn't it? Sure does confirm for me that we are not steering the wheel of life.  

We have more test results that I will be sharing tomorrow after therapy. I know the results already, but I am getting the full "hard copy" report tomorrow and don't want to leave out anything that could be considered "cool medical terms" ha. I am anxious to get that report, just another piece of the puzzle we'll fill in tomorrow.  

My biggest take-a-way for you all today is - I think all this means we are onto something team! Just as my little superhero tends to lean on things (literally) most of the time, I am leaning on you. And I am asking you to lean back. If you are a parent (or anyone) that has ever had a question, wondered or just felt like you are alone on your search for answers... YOU ARE NOT ALONE. I am an open book. I will be honest, listen and return the love that you have given to my family and Jackson in such a short amount of time. Please feel free to reach out to me if you ever need anyone. I understand privacy and I understand being scared, but sometimes we all just need to lean for a little love. 

After all, this little guy leans for love all the time. 

Jackson and our sweet friend Ava at the
U of M Homecoming Football Game

Sending you all my love,
~EM

Jackson's Journey...4 Tests-1 Answer

To say that our journey will be a long bumpy road is an understatement. Once I catch everybody up to speed my posts will be shorter, I promise! Til then just hang in there with me! I have my feelings, opinions and guesses as to what I think Jackson is experiencing, but I'm not doctor so I'll keep my thoughts to myself on all the "things" I think we are going to ummm be working on to improve. :) All sugarcoating aside, we have some great days and we have some NOT so great days. I will tell you all, as any other Mom with any child, children teach you a whole new level of patience. Or they prove you have no patience. LOL As we have come to realize Jackson seems to have his own ideas about what "normal" means, I decided that Path 2 (from this post) was the way for us to go. 

Yes I have been scared. Yes I have been researching for a long time. Yes I need answers. Are you kidding, I needed answers yesterday. What is it they say? Good things come to those that wait?.... yeah that's for the birds. I have decided to take the early bird gets the worm approach instead. And by that I mean I have been a harassing, nagging, bugging and maybe even annoying parent to every doctor and person that I think we need on our side in order to get answers. After calling almost every single day for referrals and leaving more messages than I should ever admit to, I started getting called back. Ahhh Ha! Being really  extremely persistent can have it's benefits.  

So rewind to October 8. Our first appointment. Having been screened at school for speech and hearing and being told that Jackson had not passed, that came as no surprise. I was kinda relieved he didn't pass the screening to be really honest. It meant two things. One, everything we have been noticing for years is finally starting to surface with hard evidence. Two, I'm not totally crazy. So with those results, I decided we needed a second opinion and I was going to go armed and dangerous! I asked Jackson's teacher to take notes on things she noticed, habits, mannerisms, etc and being that ANGEL that she is, I had 4 handwritten pages of notes. YES! Ms. Beth you are awesome! I also took 12, yes 12 of the exact same drawing produced by my little artistic rockstar from the Lorax (love that movie). Now, I don't know about you but I can hardly remember what I did yesterday let alone days and days worth of things. But Jackson's drawings were of the same scene from the movie, same colors, same patterns and yes I have 12. One for every month I suppose! Ha. (more on his uhhh "obsessions" later) But we had waited so long to get an appointment, I was taking all the ammo I could get together for this. We went to the EDFTC (Exceptional Development Family Treatment Center) after getting a referral to be seen and we were scheduled for a hearing/speech/language evaluation.  Let me just also preface this with, every child that has any sort of special needs is never like the next child with special needs. One test for one child is not the same test for the next child. So for Jackson a Listening Comprehension Test, Oral Expression Test, Oral Composite Test, Hearing Test and Sounds in Words Test were performed. Ms. Courtney is our speech pathologist and Jackson was immediately connected to her. I have never seen a child be SO excited to see someone (that he just met). So I'll give that a checkmark and success for starters. 

After the testing was over, we left. I felt a sense of relief. A sense of success and even though we wouldn't have any answers just yet, I was happy. Skip to October 19. Test results are in and on a Friday night at 6pm, we headed in for some answers. FINALLY! So I won't go into the somewhat hairy fine line (somewhat foreign language) details, but we'll just talk simple "what does that mean in English" terms for now. 

Scores. So every child should be at a certain communication level for their age right? For Jackson (age 6) his scores came back and on the four tests he ranked: 4% for Listening Comprehension, 1% Oral Expression, 2% for Oral Composite and 11% for Sounds in Words.  (Yes, these tests are out of 100%) Diagnosis- Mixed Receptive-Expressive Language Disorder. The good news - He PASSED the hearing test! Whoo! What his disorder means is that for his age, he falls into the categories of needing intervention/has delays/language disorder, thus the diagnosis. So for the next year, we will have speech therapy sessions with Jackson to hopefully improve his communication and speech skills. After a year the goal is to have Jackson be in the 80% range for his age group. How awesome would that be?!?     

Also along with that initial evaluation came the recommendation (and me being slightly persistent) for additional testing. So following that we are on the road to becoming a speech superstar! 

The next steps would be to have Jackson scheduled for a OT (Occupational Therapy) evaluation for Sensory Processing Disorder. One down, lots to go. So our next test was scheduled immediately the same night of our first results. So excited for October 24th I couldn't hardly stand it. 

Eager and ready we'll be reporting on those results soon! Hugs your babies and be thankful that they have so much to offer and teach you everyday. How did I get so lucky to have this kid? 

  

~EM

Can Anyone Define Normal? –The Beginning of a Long Journey

Where to begin?

When you become a parent, your life changes forever. And no matter how ready you think you are, you are not. No one is every ready for the joys, struggles, sickness, memories or up’s and down’s that come along with being a parent. John and I have felt so blessed to have both of our little monkeys. I would not trade them for anything in the world. But becoming a parent also means a lifetime of responsibility and dedication and unconditional love to a little person that thinks you single handedly hung the moon. WOW. That’s a lot of pressure. But with that comes some of the best days of your life and hard decision making to protect them too. With all the runny noses and temper tantrums comes more hugs and kisses than you can count and enough I love you’s to make you feel like just maybe you really are their hero. And although life presents all these amazing times, sometimes life presents us with hard ones too. Which brings me to the entire reason for this post.

After a long debate on whether to just put it all out there I have decided well… to put it all out there. If you know me, you know I am a private person for the most part. I don’t speak about everything that is going on every minute of my life, for a million reasons. And not that it’s changing because it’s not.

BUT.…..HERE. COMES. THE. CHANGE.

I am not looking to gain the sympathy card here, more so I feel like I should share our experience so that if there is anyone out there reading this, maybe they can benefit from our story when it comes to experiences with their own children or anyone they know with children. Here we go.

So this is something that we have been fighting for a long time. The all ending question. Is Jackson “normal”? The answer to that… what the hell is normal? I mean seriously. Does Webster’s even have a definition? John and I have always had a feeling that something was just “off” about Jackson since he was 2 and some of his behaviors were just not progressing the way they should, but weren’t really sure how to handle it or even if there was anything to handle. So starts our questioning.  Is he slow? Does he have delays? Is he speaking like he should? Do you think he could be partially deaf? Why doesn’t he want to play with other kids?  Do you think he has ADHD? Could he be autistic? Do we even know what autistic means? Are we just overthinking it? So what do you do? Let time pass? Then ask…. to be told “He’s just a boy, they take longer to develop, he’ll grow out of it and blah blah blah” Boy if I had a $1 for every time I’ve heard that from multiple sources I’d be a very wealthy person by now. For the next four years- yes I said years people… this is the feedback we have gotten.

And furthermore, not realizing it until recently, I am openly admitting I have been going through the classic stages of coping for those last four years.

First the Denial, no nothing is wrong, I don’t want to believe anything about my perfect little boy is different. Maybe even some denial of not wanting to deal with it if anything is wrong, and somewhat buying into the classic “he will grow out of it” line. That phrase is just like a bad pick up line to me- stupid, pointless and gets you nowhere.

Anger. And lots of it. Why me? Did I do something wrong? Is this all my fault? Could I have done anything different? Am I a bad parent? Why us and our family, why Jackson, anger towards Jackson because I didn’t understand, anger especially towards him being treated differently and bullied at times, anger with healthcare providers, anger towards doctors, doctors and more doctors. Anger at my husband for not feeling like he understands sometimes (even though I know he does). Anger towards myself for feeling like I can’t buy enough patience.  Anger towards other people for not understanding or seeming to even care in some cases. Anger towards him being held back at pre-school because he didn’t want to #2 for them (even though he would do it at home every day,  I mean some kids just like to take care of business at home right?!?) My anger over time towards the situation eventually led me in a different direction.

So bring on the Bargaining. Our first year of 4K . Loved our teacher, everything starts off just great. Then came the “if you will do this, you will get that” routine. Not sure if that was my cry out for him to have good behavior or a secret cry for help because I didn’t know what else to do at the time. Continue the bargaining with making the decision for him to repeat 4K for a second year in hopes that he just needs more time to develop. Keep in mind he has done great academically, it was more for social and communication reasons we decided to hold him back for another year…. BEST DECISION WE EVER MADE. Countless days go by and we are still bargaining, not sure if that will ever not be part of our equation, good thing I'm not striving for perfection huh?

Depression. Whoa….. who has time for that? I would never be depressed about anything. I am way too busy, have too much going on and only crazy people get depressed. I am happy, have a great family, wonderful friends, good home, job, etc. so why would I ever have any reason to think anything is wrong with me, right? WRONG. (kick back in the denial stage here along with the depression) It took me a long time to come to the conclusion that even though all seems ok, it’s really not. Taking a long hard look in the mirror I realized that whatever Jackson is going through is not “normal” and whatever the reason the affect it’s having on me is not the best. So, where do you go with that you ask? Well in my eyes, there were two paths.

Path 1 – continue as we were and hope that “he’ll grow out of it” (there goes that stupid line again)

Path  2 – stop listening to what everyone else is saying and start acting on what I know (insert hard  parental decision making reference here)

What would you do? That’s always an easy question until it really is you that has to answer it. How often we can all answer these questions for our friends and other people, but once you are the one calling the shots, it’s not that easy trust me. So I decided… and Path 2 was my choice. If there is any advice I could ever give any Mom it would be, ALWAYS TRUST WHAT YOU KNOW ABOUT YOUR KIDS and FIGHT FOR THEM WITH EVERYTHING YOU HAVE.

And that is what has brought me to the final stage of my coping. Acceptance. Even though it only took 4 YEARS to get to this point, can I just say I am so glad I am here. It’s like God himself just came down and took the bricks off of my shoulders and said, “let me carry those for a while”. And from then on I haven’t looked back. And so starts the journey to figure out what our sweet Jackson is going through and more importantly to help him the best I can. In an effort to have every memory of our experience and journey with Jackson, I have decided to start doing updates on our journey. What is it you ask? Great question. I have been asking that for years.

Our journey has finally started and it’s a long road ahead, but let me tell you something. The day I chose Path 2 was the day that changes my son’s life forever. This picture says it all. My sweet boy, making a thousand wishes from a dandelion with no fear and not a worry in the world.  My next post will begin explaining all about it as we are working on making our own definition of “normal”.

~EM