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

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

Sunday Not So Funday

Two monkeys with two fevers.....ahhh that's not how I wanted to start out my Sunday. Oh well, I guess we'll take today to really "rest" since Sundays are suppose to be a day of rest, right? Hoping the monkeys are back to normal for school tomorrow, the rest of my day will be spent doing laundry, cleaning and de-germing the house and getting stuff ready for the week. So much for that whole idea on resting, guess I should know better. 

A positive of today is that today is my sister or as she's better known "Auntie Auba's" birthday! (don't worry sis, I won't say your age :) And although Jackson was running a fever this morning he squeaked out his rendition of "Happy Birthday" to Auntie Auba (complete with Cha-Cha-Cha's between every line HA!) Hilarious and yet pitiful too. 

As Jackson's test scores are still setting in, I think I have 3 things I am debating. #1 I am starting to put Friday's scores into my brain folder: plethora-o-info for  Jackson, #2 I am starting to focus on what the next scores (fingers, toes and all things crossed) hopefully coming tomorrow will be. I wonder what they will reveal? Will they be a pleasant surprise? Will I have round two of picking my jaw up off the floor again? Either way, it's just one more step in the right direction. And #3 and maybe the most important, how do I begin to try to make Jackson understand what all of this means? Of course he realizes he goes to therapy, but does he know why? I highly doubt it. Maybe in movie terms since that's relatable for him?

Like the journey of the "yellow brick road"? You are headed to that magic wizard that can grant all your wishes but along the way.... LIONS and TIGERS and BEARS oh my!... but just like in the Wizard of Oz.... those lions, tigers, and bears end up becoming not feared but welcomed. That's what these test scores are starting to turn into. Yes, they scare me (Jackson probably won't care about the scores really or even understand), but I sure am thankful for them because without them, we won't reach that magical wizard that can grant all of our wishes! (call it dumb or silly, I guess that's just my mind making it all relatable for Jackson if I try to explain things to him) I also need to decide if he is even ready to hear my "attempt" to explain these things to him. I can just see it now... A 5 minute discussion (at the MOST, and I'll be lucky to get him still for two minutes), I try to explain things like a "movie" or something relatable to him and then Jackson's reaction "Cool Mom, can I go watch that movie now?" (insert MOM FAIL) Ha... but it will be funny and I'll be ok even if he has no clue what I am trying to tell him.  

He had a hard night last night as we tried attempted to play a game with the kids. Just as playing a family game is simple for me and you, it's like asking Jackson to run the NYC marathon. I won't go into that struggle, but as the journey continues I'll talk about Jackson's habits and "super powers" he has been blessed to have. :)

Hoping you all have a great week and blessed Thanksgiving! Meanwhile my little dude is trying to kick the fever......

~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

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