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

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