Showing posts with label mommy. Show all posts
Showing posts with label mommy. Show all posts

Friday, February 28, 2014

Raising an Autism Red Flag


Let me just start with this. We are so lucky and fortunate and blessed to have an ARMY of people at our school, friends, family and physicians that support us 100% through autism. They help us give Jackson the best chance to be successful at everything he does and never tell him he cannot be a part of anything he wants to do and for that I'll be forever grateful. With that said...

Controversy. Drama. If it's not one it's the other. No matter what you do in life, there is always going to be some kind of controversy. Whether it's the latest hollywood gossip about some celebrity and their trashy habit that sets a bad example for your kids or a friend of a friend of a friend that made your other friend mad blah blah blah blah blah. 

So fine. Let's go there. 

The controversy of diagnosing autism. In recent years in the autism world there has been a lot of back and forth about the DSM 5 Concept of Autism and how it would affect future diagnosis' and those who are already diagnosed. In English, the criteria for diagnosing autism will change and the new classification system eliminates otherwise separated subcategories on the spectrum. Meaning children diagnosed with Asperger syndrome, PDD-NOS, childhood disintegrative disorder and autistic disorder will be placed under a big broad umbrella of simply autism spectrum disorder (ASD). And from that poses the frequently asked question is "will my child lose his diagnosis?" And the response? Straight from AutismSpeaks' page 


In other words, if you have a diagnosis for ASD, you have a diagnosis of ASD for your life and should be entitled to appropriate interventions for the rest of your life. Need for individualized services may change, and you or your child may need different levels of support or different interventions as you or your child age.  

Excuse me, but what the hell? 

I challenge someone who is qualified in the autism industry to give me a real answer. I'll take the risk of someone seeing this in the media or some medical person or what not tearing me up as a parent that's mis-informed, not qualified or uneducated or however they want to spin it.

#1 - WHY on Earth stick all of these kids and diagnosed people under this giant umbrella together? I think every parent out there of an autistic child will agree with me that every child with autism is different, which they ARE, does that really do anyone any good? Way to take the one-size-fits-all approach. Read between the lines - that's a cop out. 

#2 - You "brilliant" people focus on the wrong "C" word. You steer parents to the COPE for life when you should be looking for a CURE for life! It's been said there is no cure for autism, which I completely disagree with. You say there are treatments, great I love treatment. You say there are things that make it a easier for these individuals, I agree and am extremely grateful for everything we have that helps make our days easier. But where are the answers for helping people with autism no longer have autism? Kinda like sweeping the dust under the rug don't ya think? You can't see the dust, you treated it with the broom, but the dust is still there. 

#3 - It's a mentality of pushing aside controversy no one wants to deal with. Because it's often easier to medicate these kids and just send them on their way and we'll see ya in 6 months to write another scrip. Wash, rinse, repeat much? 

#4 - We don't all want to keep our "label". We get to keep our diagnosis for life? Gee thanks, how will we ever repay you? If it's needed, then so be it. Maybe everyone cannot overcome their autism, I get that. And while my son NEEDS his "label" for a million reasons right NOW, I have the hope that one day he won't need it anymore because he beats autism. And he's come a LONG way, so why can't he go all the way? What's wrong with wanting to beat autism? 

#5 - Sure, you can win for now. I admit we cope everyday, we have a long journey ahead of us, just like all families that are living with autism do. We fight for our son everyday and we love him unconditionally, but I cannot mentally accept just coping and dealing with autism forever and thinking this will always be something we just have to "live" with. Or at least I'm going down swinging. My hope is that we overcome autism and leave it in the dust one day. Will it ever happen? Is it even possible? I guess that's to be seen, but the mentality of our society just accepting that these kids are different and never looking for a way to beat autism is complete crap. Of course they are "different", we are all uniquely different you idiots.

I can't speak for all parents of autistic children, adolescents or even autistic adults. I speak for myself and my son only, but the thought of someone saying to me: "Your son CAN overcome all the adversity and no longer have autism" would be like winning the lottery to me and I am guessing I'm not alone. Does it mean that I'm not grateful for all the therapies, teachers, doctors and yes even medicine to help him sleep that we currently have in our everyday life? Of course I am grateful. We need all of that right now and I have accepted our diagnosis for a long time. I was even happy for the diagnosis because I know we needed it for Jackson to get the services he needs to succeed. But do I plan on him needing that forever? I sure as hell hope not and I'm going to do everything I can to see that we win this fight. 

~EM




Friday, November 1, 2013

I am "Hustle and Flow"

TGIF everybody! So glad the weekend is here, it's been a long week! Lots of updates this week as Jackson had more testing today as I mentioned we were going through. I think he did ok. These tests are taxing and emotional to say the least, but they are necessary. I sometimes stay for portions of his testing but most times I leave him to do his thing and come back. Hallie was with me today (supporting) for the morning as we dropped off Jackson this morning. We stayed for the first little bit but after I realized "supportive" sis was whispering answers to the testing for Jackson (BAD HALLIE!) we promptly left, ha. Today's test consisted of his speech and language evaluations. It's time for the yearly deal plus it met the requirements of the testing we are going through for the SCS program for Jackson. Killing two birds with one stone, don't mind if we do. We also received a letter in the mail today being approved for Jackson's neuropsychological evaluation to be covered by insurance, whoooo! Win #2.

As the week has been winding down and Jackson continues on the rigorous test trail, we are also still working on the house trying to make it our own. We are painting at the moment and it's been a whirlwind of paint like a color wheel around here. The kitchen, dining room, office, laundry and Jackson's bedroom and trim are all getting a facelift this week/weekend. Yep, we look like we just moved in again. Stuff is everywhere! (cue the OMG the house is upside down) Just a few pics of the house (excuse the mess!)

The front living room, still a work in progress


Yes, it's dark and yes I L-O-V-E it! (one day that lovely carpeted floor will take a hike, right honey??? Hehe Excuse the decor, I'm just throwing things in the room for color options at the moment. 
I LOVE how things are really coming together on the house and it's starting to finally feel like home.  I'll post some before and after pics soon with all the ins and outs of the house coming together! This week we had a field trip, spelling test, Jackson got a 100 I might add, saints parade at school, RIPE reading award, speech and language testing, gymnastics, ballet, halloween and painting on the house. Whew. That makes me tired just to type it all and I'm probably leaving out something. So two  costumes later and Halloween was a success last night. I am so glad we got to go trick or treating with the kids. We trotted around the neighborhood with Sleeping Beauty and Wolverine and came home with an overload of sugar so it was a good night and so much fun! A couple of pictures from the saints parade and Halloween. 



Ever feel like you literally hustle to the nth degree? I sure do. Between all the demands of Jackson's testing and keeping up with the school schedules I am worn out. Otherwise, I have to just go with the flow with all things autism related and all things life. We'll get updates on Jackson's testing at the end of the evaluation period. We have 41 days to go, but who's counting right? Until then, I guess I'll mark down the days on the calendar like the countdown to Christmas. Super blessed to be the Mommy to these two monkeys. Enjoy the weekend and hug your babies!

~EM

Sunday, October 27, 2013

How Do You Compare? You. Don't.

School, school. You are tiring! I don't know about any of you other parents out there but elementary school wears me out! It's a LOT to keep up with. My kids have a way better social calendar than me, but somehow day to day we make it through. Lots of things have been going on lately this year with school. Jackson of course is in the Angel Program at HR and LORD knows those people are miracle workers! I have a working post to dedicate solely to them that I'll post later (it's a work in progress). School has been up and down this year. Of course Jackson is ecstatic to have Hallie at school with him this year and she is doing wonderful! I never worry about Hallie. She is smart, ahead of the game and always on top of everything she needs to do. She is so smart. And ohhhhh I have had the wish that I could switch her to 1st grade and Jackson back to 4K a time or ten. So sue me. It's only human to wish that you could make things easier every now and then right? 

Jackson started school and the first month was O.K. Just ok. He always has a period of adjustment it seems when we have a new teacher, new classmates and new surroundings. I guess that's pretty normal. As the weeks have gone on, several adjustments and academic modifications have been made for Jackson to help him at school. Everything from his "team" ARMY of teachers/aids/helpers/tutoring staff/etc being added to the mix, fidgets for the classroom, medications (ugh I hate those things) and even filming him during school to try and come up with the best plan for Jackson. But NO WHERE ELSE are we gonna get that kind of attention and help for him and for that I am beyond forever grateful. Like I said, he has some real miracle workers in his presence. So week by week and adjustment by adjustment we just hang on and ride the ride. He started out going the full day with his classmates but in the last few weeks has changed to a lot stricter schedule in the  mornings and then joining in with his classmates later in the day. I stopped his ADHD medications because the side of effect of him biting every single finger to bleeding almost daily was just terrible. So off of that and only now do we continue with his sleep medication at bedtime. That however has been a savior in the meds department because he is actually getting sleep and not looking like a zombie when he wakes up. He's always struggled to sleep. I am not here to push pro/anti meds on anyone but I have decided that if there is a medication that improves his quality of life and doesn't change who he is then I am for that medication for my child. 

Academically he is still struggling. Really struggling with reading and language in particular. Math is much better and art/music/PE are all pretty good. Homework is painful, PERIOD. There is just no other way to put it. Some days he finishes at school (thank goodness) but even then we try to review at night. Some nights take us up to 2 whole hours to do homework that should normally take maybe 20 minutes at the most. It's like a full time job folks! And it takes a LOT LOT LOT of patience to remain calm and help Jackson, but I'll do it everyday if it's what it takes. Some days are better than others, some days he wants to learn more than others but I only take it one day at a time and I think he takes it one minute at a time. Each year the kids take the ITBS test (kinda like the TCAP standardized testing for all you oldies out there like me) to determine where your child is on the scale of the "national average" of students their age. Well #1 Jackson is already a year older than all of his peers (strike one), he is not an "average" child (strike two) and he doesn't participate in the normal time constraints/settings of the testing with his class because at this point he is not able to take a "timed test" (strike three). So in my book he's out. Not out as in he doesn't count. Just he's out in that it doesn't compare. I stopped comparing Jackson to other kids a LONG time ago. I'm not sure everyone will agree with that or not, but that's my choice. And I know he has to take the tests as part of his school and since the state mandates it for academic placement so of course he takes it. But I really don't look at it as a true representation of how he really measures on the scale of school. 

I'll be even more honest here. His scores are low. Really LOW. But that's ok because ultimately those tests are just a bunch of numbers on a page for me. What I want to see is progress. How does Jackson today compare to Jackson last year? That's what I measure. That's not always an easy measurement either and it's also not easy to just let go and accept that measurement. Of course I have my days that I want him to be the straight A student, the most popular kid in class, the sports MVP, I think we all want that for our kids right?!?!?! I even thought about posting those scores and his report card and I did take pictures, but I decided I don't need to justify anything with a picture and some things are just better left for Mom and Dad's eyes only. 

So how does Jackson compare to Jackson? Well let's see... this time last year he was failing (miserably) every spelling test he took, maybe one word right if we were lucky, usually it came home as a blank page or words that were reversed letters, unreadable mumbo jumbo, you name it. This year, we started a little rough, he made an F (I won't even mention the score) and now? Last test 100, the one before that 80, the one before that 100. We are making progress! Whooo right? Yes! To a certain degree. 

Yes, he is doing better at his spelling words, he has a smaller list than the rest of the class which is fine by me!  What's the catch then you ask? He is SLOWLY starting to retain some of the words he is learning. That has been a HUGE struggle for Jackson because he can learn the words no problem, but two days later and he needs to learn them all over again, literally he can't remember what he just learned. And reading? Well, that''s a whole other animal. He can read words, he can also memorize words. By words, I mean books. He is memorizing books! WHAT?!?! He was "busted" so to speak reading to me and one of his teachers. He has learned to associate the words on the pages with the pictures associated to them and that's how he reads entire books. It's actually pretty amazing if you ask me, who the heck can do that! Cover those pictures and he can't read the book to you anymore. Insane. I CANNNNNNNOT wrap my mind around that. That is a lot of pictures-to-words ratio of memorizing. It's not that way with every book he reads but there is a couple of Dr. Seuss books and beginner reader books (about 30 pages each) that he has memorized completely. As super cool as that is and I think it's a gift really, he is still struggling to read. But again, one day at a time. 

So report cards finally came out for the first nine weeks of school. We have a LONG way to go, but compared to last year, he's flying! So I have no doubts we are headed in the right direction. He learns at his pace and his pace only. There is no rushing him or you lose him. There is no scolding or he shuts down. There is only Jackson pace. He is a turtle of a learner. But slow and steady wins the race, so as long as he continues on a good path, fast or slow we are on the same pace too. I still push him every now and then but I know his boundaries only because I know my child. I can tell when it's too much or when he can be challenged and pushed harder. We put blood sweat and tears into homework for the 30 minutes it takes on a great day or the 2+ hours it takes on most days. 

We keep fighting the fight though, my little turtle has a hard shell and he will win that race one day. I can't wait to compare Jackson today to Jackson at the end of this school year because by then he may running this race. 

Still learning from this kiddo every day. He amazes me.


~EM

Wednesday, October 16, 2013

On The Move!

Hellllllllllllllllooooo friends! You thought I had dropped off the face of the earth, didn't you? MAN! Do we have a LOT of catching up to do. 

As you all know August hit and we were back to school. Jackson of course had just come off of intensive summer school with the Angel Program at Holy Rosary and Hallie was so excited to finally be in school with Jackson. And just to make matters fun and crazy, why not toss in a move all at the same time??? Yep, I know. I am CRAZY to move right at the beginning of a school year and let's just face it, Jackson's not exactly the type to just "go with it" when things are up in the air. But you know what, that's life and the show must go on. 

So all in two weeks, we packed up our first home (tear), had contractors, painters and cleaning companies galore, renters move in to our old house and moved to our new house, all within the first two weeks of school starting back. I know you think I should check myself into an insane asylum for adding all that stress on myself. It's hard enough to make sure we had uniforms and the right socks to meet our dress code at school. Needless to say, about the only think I didn't pack was school uniforms and toothbrushes. 

Even though I was super excited about moving to a new house, it also meant we had to leave our first house. The house we brought babies into, the first house we bought, the place we called "home" for six years. I'll miss our little house in so many ways, but I am so excited for our future in our new house too! (Don't judge my brown grass, it's hot in Memphis people!)


So on to new adventures, making new memories and now we have moved to our new house, a whopping 5 minutes away from our old house. I am such a creature of habit in that I was totally spoiled being so close to everything at our old house, that I couldn't imagine moving very far. I literally complain when it takes me more than 10 minutes to get to a Target, a good restaurant... you know the staple places of life, LOL. I should really grow up and realize driving isn't that big of a deal, but geez it's hard to leave convenience and I know you all hate Memphis drivers as much as I do!! (Cue road mental road rage) For what has seemed like the longest search everrrrrrr, we finally found "the one" and I hope we never move again! It has been taxing on the kids, me and J and even the dogs! Sooo here we are in the yard, yes I pulled the sign out of the grass and turned it the wrong way (such a rebel) so we could get a picture before they took the sign down. Yes people drove by and stared at us like we were crazy but I really didn't care. 


It's been just over 6 weeks since we have moved and while I feel we are a little disheveled from unpacking and trying to figure out the SIXTEEN keys we were given to the house, we did still somehow manage to lock ourselves out of the house. (yep the hubs did it before we even moved in, only took about 20 mins, HAHAHA!) Sorry to put you on blast honey, but it was funny!

Otherwise we are hanging in with school and getting back into the swing of things. I have lots of autism updates from our new school program to the latest tests we are set for (tomorrow actually). I also hope to update the blog as we make our new house our home. So stay tuned and I'll be the first to say, "I've missed you blog! You are my therapy!" Til' next time.....

Happy Hump Day!

~EM

Wednesday, June 19, 2013

It's Like Saying Bomb On An Airplane.....

Happy hump day folks! Man on man I feel like we have been on a roller coaster lately with all things LIFE! Jackson is in his third week of summer school and doing well and Hallie is chomping at the bit to go to "big girl school" this fall. I cannot believe they are 4 and 7! When did my babies get so big? We have also been on the hunt for a new house for quite some time. What a PROCESS to say the least. The ugly ones, the scary ones, the one that's a little too big, the one that would be perfect until you see the price tag! (of course I never look at the price of anything, just look for what I like and then the price tag... typical woman I suppose LOL) But all that aside, I think we might have found "the one". We put an offer in today and hope to know something by Friday, so all you lovers out there keep your fingers crossed and pray for us because my sanity can't handle much more on the house hunt! HA! 

In other news, Jackson has been in seriously intensive summer school for three weeks. He is doing really well academically! I say well as a relative term because we still have a super long way to go but so far so good in the progress department. YAY! We still have our days that don't go so great of course (like last week when he had to be physically removed from a fight because another little boy was antagonizing him, but that's another story). He has learned about 12 new words and read his first book to me all the way through! Never mind it was a Pre-K reader book of none other than "The Lorax" WHO CARES!!!! He could read the phone book to me as long as he reads, I don't care what it is! 

Speaking of other days that don't go so well. Wellllllllll we got a picture sent home today (with a sad face drawn on it even) and a lengthy note about this "ahem" drawing. A counselor's father passed away at the school and the kids were drawing him pictures. Jackson chose to do his own rendition of a drawing for him. Not sure if he associated his drawing with death or what, but his picture was less than desirable for the occasion. I am not posting a picture of it, but let me just say it was a lovely drawing, but SOOOOOOOOOOOOOO wrong for the occasion or even to be drawn at school. He drew a detailed full scale drawing of people, a large group of people shooting each other with guns. (excuse me while I gather myself and push my stomach out of my throat)

How in the world do I even begin to explain to him that even though someone died he cannot draw ANYTHING pertaining to guns at school. It's simply unacceptable and cannot happen. I almost didn't know where to begin. I pulled Jackson to me and very calmly but sternly explained that we had to talk about this picture he drew today and why it was never to be drawn nor is he allowed to talk about guns at school. It's seriously like getting on a plane and yelling BOMB!!!! You just can't do it. As we went back and forth with him doing what I felt like was his best effort to keep eye contact with me, I could tell he was shaky. Those big blue eyes welled up and I could see his tears were going to start any second. 

I have been so proud of his progress over the last few short weeks, but man this was a tough conversation tonight. Definitely not one I wanted to have and honestly I didn't know if he would even really understand. But I think he did. He said he was sorry. He said he was just drawing a picture like the army. I am so thankful that he hopefully understands that the army protects us, our country and our freedom, but in this instance the guns and shooting are a no go. The further we went into the conversation the more he was fidgeting and the more I could tell he was getting overwhelmed from our discussion. I assured him he was not in trouble, but that if he ever talked about guns or drew them at school again, Mommy would have to come to school and that it would not be fun. He fell to the floor crying. I literally had to pick him up but not hug him. Do you know how hard that is as a parent to have to pick up your child who thought he was drawing a picture to tell him that it's not allowed????? I knew if I hugged him, he would think he was "off the hook" so I couldn't even though I wanted to. I even wanted to cry, but I couldn't do that either. 

This is one of those tough parenting times as a Mom in general, autism aside. But also considering that Jacks processes things in his own way, I decided we had to turn this into a learning experience for him or he would never want to do "art" again for fear of getting in trouble. So after our long, stern, torturing conversation I asked Jackson if we could make a deal. We decided that from now on the day before art class, we will talk about what he will draw for me. I get to pick the next picture and from there we will pick two picture options and he can choose the one he wants to draw for me. You see, I have to turn things this way for him to want to be interesting in continuing and so he understands that although today was a big no no, he can still draw great pictures for Mommy and Daddy. 

Since we have some behavioral issues that we are still combating, I feel like teaching Jackson that guns are not safe is VITALLY important. I know guns are definitely something that I exist I realize that. But Jackson does not understand that they can really hurt people. And obviously he doesn't understand that there's a time and place for them, which was not today for sure. And it's not something I am willing to risk with him thinking they are anything but dangerous. Even all the way down to the Nerf and water guns. I just simply choose that he cannot have them. He can know they exist and I can teach him about them, but for now they have no place in our life at the moment. 

Lesson for today - kids make mistakes. We all do. But for Jackson redirection from those mistakes and giving him options to make good decisions will hopefully make sure we never have "guns" drawn at school again and he will go to art ready to draw the picture he chooses so he feels empowered to make his own decisions. I think I might be starting to catch on to Jackson's way of learning thing. Kinda crazy how much that kiddo teaches me to take a step back and approach life from a different angle. 

Hoping I never see guns on paper again. EVER.
~EM

Tuesday, April 2, 2013

Are you Au-ware?

So today was a special day of celebration. Not the first day, but a first for us and for Jackson. The first year for us to be a part of the World Autism Awareness Day. I have done a lot of thinking today, a lot of reflecting and a lot of realizing. Realizing that we are not the only ones. We are not alone. And together we can make a difference in the world of autism. I wore my blue for my sweet Jacks and I have seen countless acts of support through social media, community events and national fundraising campaigns to support Autism Awareness. 

Considering that so often we get arguably caught up in keeping up with the Jones' in our day to day lives, we often forget to remember just how blessed we are. Sitting in mass this past weekend for Easter the song Living Feast was playing as Communion was given. I returned to my seat holding squeezing Hallie and I found myself reflecting through prayer over the last 8 months and realizing just how far we have come as a family. I prayed for Jackson, I prayed for other children with autism and I prayed for families that live with autism everyday. I prayed in thanks for everything I have, in thanks for all the sacrifices that Jesus made for us. I prayed for peace. Peace and love and thanks. I was borderline ready to just let my tears go right there in the pew. What a difference a small amount of time has made in my life, our family life and most importantly Jackson's life. 

Even though today was a national day of recognition, there are 364 days a year that aren't recognized for autism, but trust me autism doesn't disappear. It's present in my life everyday. It brings about new struggles  and new victories for us everyday. And while I have been so wrapped up in all the hairy scary details of autism there is something else that doesn't disappear. And that's God, who is also present everyday. I guess part of me has been taking that for granted lately. Not by choice, just by default as a human being. Just being wrapped up in my own thoughts and struggles that I've forgotten about how much God really loves us and has a true path for us in life. For the first time in a long time, I think I am on the path that God has for me. Maybe a path I don't understand sometimes and it's just taken me a while (eh 30 years) to get there, but none the less a path. It may be a path of mystery, but it's also a path of survival and a path to victory. (whew... did I just say all that in public?)  

Our path is a path to share and it's so much bigger than we are, just like todays celebration of autism awareness around the world. So thank you for everyone who supported Autism today, it means so much. And I have to say thank you God for reminding me that you are always Au-ware of just what I need. 

Leaving you with one little boy who will forever light up my life.


~EM

Monday, March 18, 2013

What One has the Other Must too

Kids fall. They get bumps, bruises, scratches and boo boo's. Ok fine. And even though kids are super resilient most of the time, it's hard for Mommy and Daddy to see their little monkeys hurt. 

What can I say, our weekend didn't go according to plan (whatever that means). But before we get to that, when Jackson was little he used to sleep walk which = recipe for disaster. Here comes my gold medal for "parent of the year". One night he fell out of his bed about 2am. I hear the thud, think "oh no!" and then he comes wondering into our room. No crying or reaction to falling out of the bed, he climbs in with us. So naturally I assume he fell, he's ok... now back to the slumber. So we go back to sleep and the next morning wake up to blood. A lot of blood. All over the bed, all over everything. (why did I not turn on the lights to make sure he was ok, I have no idea  it was 2am, that's why!) So I panic slightly, feel terrible that I didn't turn the light on long enough to check him through the night and realize quickly he's hit his face and hard. So a call into work and a terrible patch job on the wound later, we are off to the doctor. Because the gash was so close to his eye our pediatrician recommended we use surgical glue to close up the battle wound. Exhibit A: (gross, I know... and nevermind the chocolate on his face from rewarding the good behavior during the office visit, ha ooops!)


Then there's this last weekend. No matter the age, kids always seem to want what the other brother or sister has, but in this case I could have gone with only one of these eye-gashing episodes. So this past weekend the kids were watching a movie in our bed, just relaxing... that was until Hallie came down the hall and said, "I think I hurt myself Mommy" HOLY!  Ummm yeah! Blood everywhere round two.  I can see she is scared because she sees the blood and try to remain as calm as possible. She explains to me she was playing on the bed aka jumping and probably flipping like she's at "mishnastics" (which she knows she isn't suppose to do) and that she hit the dresser and then the wall. She too has busted her face open, same spot, same location just on the opposite eye. So another patch job and off to LeBohneur we go and I know Hallie's cut is deep. 

We get there (Hallie was less than enthused to be there obviously) and we are called back quickly. The paramedic assesses the damage and says they can sew up her face. (just lovely) I almost cried. The doctor suggested some meds to help her relax before they did the stitches and that they would make her a little drunk-like with her words/eyes/actions. In comes the comic relief. She was cracking us up! She could barely sit up, was asking about pop-cicles, random things and just before they started her stitches looked and me and said, "Hey Mom..." I said, "yes Hallie what is is?" and she proudly states, "Boom Shaka Laka" LOL! Where did that come from? Where did she even hear that??? We were laughing hysterically and in comes the team to fix eye boo boo #2.





Five stitches later and we have the second Exhibit A:

 

Totally not excited about getting stitches. Totally not happy with the black eye that is most likely on the way and totally not excited that we have to keep this thing dry. Oh and add to that no picking at them. Hopefully these lovely stitches and bruising will diminish in the next 7-10 days and we can put this one behind us and preferably for my sanity no more injuries to the head for either one of my monkeys! Now they will have matching scars on opposite eyes, just lovely! This is definitely one thing I could have gone without for either of them. I'm sure we'll look back on our matching scars one of these days and laugh. (ehhh maybe)

Trying to keep the house boo boo free. We'll see how long that lasts. Wish me luck...
 ~EM

Wednesday, March 6, 2013

Add this to the Autism list

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

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

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

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

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

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

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

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

~EM


Monday, January 28, 2013

Commander Mommy - Drill Sargent

Wash. Rinse. Repeat. Wash. Rinse. Repeat. Makes perfect sense right? As a adults that's what most of us do on a daily basis. We get into a routine. A routine that gets us from A to B, from Monday to Friday, from the beginning to the end of a long day. Even all things "routine" can get a bit too repetitive, a lot boring and quickly stale. Imagine the same 5 meals for dinner every week. Mystery meat Monday, taco Tuesday.... you get the picture. Eventually that gets old. Seriously old. Soooo we follow the so called schedule in terms of doing the same things in general everyday, but thank God macaroni and cheese isn't the side item every Thursday. Unless you live at my house...

Boring - maybe. Monotonous - definitely. Effective - Abso-freakin-lutely!

You've heard the line "creatures of habit"...well Jackson is definitely a creature of habit. He could literally do, eat, yes I said eat and play the same things the same way everyday and perfectly content with that. Great, easy enough! That makes it very easy right? Wrong. Not even close. I'll be the first to admit that we are on a schedule, a strict one at that and I try not to veer from it unless necessary, and that's not always easy! He's as stubborn as mule when it comes to changing the "routine". So we stick to whenever possible in every fashion. Especially when I'm a one woman show and John's traveling. The TV stays off, the kids are in bed at 8 on the dot and I'm marking off checklists like a soldier. It's kinda becoming the only way I know how to operate these days (at least if I want to keep my sanity). Jackson is very much a visual learner. I can tell him something 10 times but I might as well ask the door to do what I'm asking. But if I show him or give him something visual and colored to reference, he gets it. It's like "Jackson language". Which is cool. So in an effort to not have the nighttime routine be such a struggle, I made him a visual nighttime chart. Yep, you guessed it. Pictures that are color coded for every task. He can associate the color with each thing on the list and knowing that it's time to move on to the next color and picture really helps him. Come to think of it, doesn't that help us all??? (Even Hallie likes to be instructional on the color block he's on at the moment, ha!) And without further delay... our trusty chart! (sorry for the crappy quality, I am obviously photo challenged today but you get the idea here)

I am in the process of making these charts for everything we do! That's very good in a way, but also means Mom is WAY ACCOUNTABLE for hitting every item on the list! (no pressure there) Here's the other side of that. Yes, these charts are super duper helpful. Yes, they help Jackson. However, I don't want him to only live by those charts and have everything come crashing down heaven forbid we miss something (because let's be real, at some point that will happen). Sneaky Mommy, teacher, drill sargent, care-giver extraordinaire to  the rescue! (ok ok just plain ole Mom doing what she thinks is best for her monkey to the rescue is more like it)

In learning as we go along, I'm finding little things everyday that seem to help Jackson whether it be at home, school, public, self help, whatever. So he operates on a tight schedule, fantastic. Newsflash! Life is not a set schedule! If it was, we'd all have it wayyy to easy anyway. So life happens, you take it as it comes. It's called  change. What was that I said Jackson was no good at? Oh yeah, change! Here's where the "meet me in the middle" strategy comes in.

Have it your way Jackson.... we are going to continue on the visual schedule rigmarole, I can roll with that. What I can't roll with is him depending on those forever. My plan. We'll stick to these "tight, same everyday routine" deals for the next little bit. Then my plan is to start incorporating and teaching him things from these visually. Like... making choices. So our schedules may go from one color block to two color blocks side by side with two different activities and HE will have to decide what he wants to do next, which path to take. It will teach him visually, it will force him to learn to make decisions, it puts him in control and gives him some empowerment. It will force him to communicate his decisions and most of all, it will teach him that he can be a part of his "schedule" and that things don't have to be exactly the same every day. Seem like common sense? Well, it's not.

No blog, book, medical webpage or any other crap resource out there suggested that one. There is no help manual or book titled "Autism Just for Your Kid" out there. So I'm writing my own manual. And apparently, my chart making skills will be stellar by the end of this too. Yes, it's time consuming to make all these schedules and add visual pictures to them that he can actually understand, but if it helps him, it's worth it to me. I hope through doing this to eventually add steps on the schedule that are blank boxes. Meaning there is no schedule. There is no certain thing to do. I hope this will teach him how to cope with change and welcome it. I hope it will teach him to "go with the flow" and be flexible. I hope that it will teach him that he can make his own decisions and feel good about his decisions without a pretty colored box to tell him what to do. See where I'm going with this? I want him to learn how to deal with life, but learn in Jackson terms. I want him to feel like he has been empowered to learn these skills because forcing Jackson with anything has never produced a positive outcome. He is definitely beating to his own drum and that's perfectly okay. My so-called manual may not help any other kid, but it could help lots of kids I don't know. I just know I have said many times that I plan to give him every tool I can to be successful and I that is what I am going to do.

I know this will be a slow process and we will have to go at "Jackson pace" but hey slow and steady wins the race. I'm going to be working with the school too, to incorporate this subtly into his day too. It's not that I mind if the other kids notice, but normalcy at school is key for every kid, so the less noticeable the better for the moment I think. I'll be sure to post updates on how my drill sargent and scheduled ways succeed or fail. I'm not worried if they do fail though. It will just mean we need to take another path. Everything is worth a shot in hopes for a better tomorrow. I wish I had a pretty visual chart to help me sometimes! Ha! I guess in a way, this will be my pretty chart that helps me too.


I have had people ask me, why I am so strict and stubborn about Jackson's schedule. Here's my brutally honest, um polite response to that.... IF at ANY time you think you would like to take Jackson for a couple of days and just go with the flow, you are welcome to do it! I guarantee you will be SPRINTING to bring him back and begging for a schedule at that! Trust me when I say for my sanity (and yours, lol) it's in everyones best interest for Jackson to stay on a productive and clear schedule! And for now,  I'm commander in chief and that's the way it's gonna go!


~EM

Thursday, January 24, 2013

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

Wednesday, January 9, 2013

It's Time.

I'm a bag of emotion today, so bear with me. I need to walk down memory lane for a minute, so grab your vino and come along. Let's rewind some years ago to May 22, 2006 at 9:54pm. After 27 hours of labor and  an emergency delivery... a 7lb. 7oz., 19.5 inches long blonde hair blue-eyed baby boy was brought into our lives forever. My Jackson. Our Jackson. One of my two sweetest blessings in my life. This photo was taken just after he was born. I can think back to that experience of delivery and let me say it was and EXPERIENCE! This isn't going to turn into a TLC Baby Story so we'll just leave that at that and just say that I am so thankful he is in this world with us and a beautiful healthy little boy. It's so crazy to me to think that day is fast approaching 7 years ago. 

I knew that day had changed my life but I don't think I ever fully understood until recently just how much God really works in mysterious ways and that ultimately, HE is in control. If anyone told me that day on May 22, 2006, that we would be where we are today, I would said they are nuts. 

What I am learning is that he is destined for so many great things. What will he be when he grows up? What mistakes will he make along the way? What will he teach us as we live life? I don't know. And I don't care today. Today I am just focusing on the present. Today is what my life is about. One day, hell, one hour at a time is all that matters to me right now.

The time has come for Jackson's neurology testing to begin tomorrow with Dr. Eastmead with the Memphis Neurology Group. The day we have waited for, for soooo long. I have heard absolutely wonderful things about him but I'm not sure I am ready for all this. I mean we have been through, denial, anger, questioning, fighting for years... not to mention the best stage of all and that is acceptance of where we are today. Acceptance of the present. And although I am at the stage of acceptance, I am scared. Tomorrow begins the downhill stretch - the final mile of the marathon we have been running for so long. I know it will be a process and I'm sure it will take time to have results, I just hope I am ready for those results. 

Does he have some form of Autism? Does he have ADHD? I don't know, I'm not a doctor. Honestly, I have no IDEA what our results will be (I have my feelings and opinion of course), but I just know one way or another I am ready to hear them or at least I hope so. I don't know what my reaction will be. I don't know what Jackson will think when we talk about it. He may not even care (and probably won't). I don't know how our family and friends will react. The tunnel of "answers" is quite dark today for me. 

Shining at the end of that tunnel is a light though. That light is Jackson. Such a loving little boy and so full of mystery and wonder. I wonder what he is thinking. We have talked about the testing a little bit because I don't what him to be so overwhelmed tomorrow, but I haven't wanted it to be all we focus on either.  

Swallowing your pride and doing what is right for your child is not easy. It's never easy to think about learning disabilities and admitting to yourself that something is just not "all there" for your perfect angel. I think that is how all parents see their kids, as perfect. I know I do. Even though he is not a Soccer MVP or coolest kid in the class, I think my kiddo is pretty awesome. 

Sometimes when you need support and help, no one can help you fill those needs if you don't let down the walls and allow your vulnerable side to show. Today my vulnerability is out there and my walls are down. I don't ask a lot from other people, I certainly don't ask for any sympathy. 

Today I am asking for a prayers. Prayers of love and support and mostly for Jackson. 

Tomorrow we will take a full load of "ammo" (aka tests, artwork, schoolwork, teachers notes, etc) to this appointment and one more thing... our angel, Jackson's Grandma Peggy. I know she will be with us and I have found myself today leaning on her for support and asking her to watch over us tomorrow. As Jackson leans all the time, today I am leaning on the power or prayer and support. I pray for answers for Jackson, no matter what the answers are, just answers. I don't know what tomorrow holds for our future, but today I'm holding his hand  and tomorrow it's downhill to that finish line!

All my love and thanks for your continued support and prayers. I can never repay the support we have received, but just know from the bottom of my being, I am truely thankful.
EM

I love you Jackson and you will be great tomorrow monkey! Love, Mom 

Thursday, January 3, 2013

A Day I'll Never Forget

Just before the holiday season of 2012, a cloud of sad and somber seemed to linger I think. From the many children and adults in New Town, CT that did not survive the horrible Sandy Hook Elementary school shooting to the fallen police woman here in Memphis, it just seemed like death and sorrow was all around just before the season often referred to as "the most wonderful time of the year" was fast approaching. I'll be the first to admit that I have never had the lifelong dream of becoming a police officer, firefighter or anything involving a uniform for that matter. But I do have the upmost respect for all the people that serve our communities and wonderful country to keep us safe every day of our lives. There will never be enough thank you's or money to justify what those people give so selflessly for the greater good. 

On Friday, December 21, 2012, I was headed out to lunch to meet my hubby and Jackson. As I was driving down Germantown Parkway to meet my boys I noticed two firetrucks parked on both sided of the roads and they were raising the American flag. I wasn't sure if there was maybe going to be a Christmas parade over the weekend or something, so I just went on my way. After lunch I headed back down Germantown Parkway and soon figured out the reason that flag was flying high in the air. Traffic had come to a complete standstill, which isn't and wasn't necessarily a surprise on G'town Parkway, but that Friday it was backed up further than I could see going forward and backwards. As I sat there my first thought was there was a wreck. Ok, 15 minutes later and still hadn't moved. Starting to think it must have been a bad wreck. Then came the lights. 

I then realized what was going on. It was the beginning of the funeral procession for the fallen police woman and mother, Martoiya Lang. I rolled down my window and watched the whole thing. I have never seen so many police officers or longer funeral procession in my entire life. Motorcycle after motorcycle passed along with ambulances  and more unmarked cars than I could count went by. 

The moment was almost surreal. It's was like the whole thing went by in slow motion. People started to put their cars in park, myself included and stand outside to watch the solemn scene that was in a way "parading" by us. 
My mind was blank. All I could think about was a woman that lost her life just a week before, four children that lost their Mommy all too soon and the abundance of tissues I could see through the windows of the officers driving by. Most of them had their windows down. 

As her car passed, the family cars followed behind. At that moment, I could not do a thing but cry. And by cry, I mean balling ugly cry. The moment was so sad and so real I just broke down. And I wasn't the only one. I looked around me and a lot of people were crying. I imagined those four beautiful children in a state of shock and devastation. I couldn't even begin to feel their pain. I was parked on Germantown Parkway for an entire hour before the entire procession passed. I cried the whole time.  Why I feel compelled to share this I have no idea. Maybe it's my way of paying my respects to her? A small thank you for risking her life to serve and protect only to fight the fight she ultimately lost in a terrible way. 

Maybe it was just a good dose of perspective for me? It made me so thankful for my children and my husband and my family. It reminded me that we are never guaranteed tomorrow and that we should really count our blessings every day. I know we all face our own struggles and journeys everyday, just like my sweet Jackson may be facing, but it also reminds me to be thankful that I am here to be a part of that journey and that life is so precious. Somehow all my so called "problems" seemed like nothing that day.  

I hope, pray and wish for the young Mother, officer, Martoiya Lang (who was only 32) to rest in peace and that her children will feel the love and support that I am positive they are surrounded by. 


As the procession ended and I headed back to my office, I saw the American flag flying above the road I had seen on my way to lunch. I saw them take down the flag just as I saw them hanging it up when I first started out to lunch. For some reason it just symbolized to me that everything in our life has a beginning and an end and that time moves so fast, sometimes faster than we want it to. 

Counted my blessings and prayed more times than I could count that day. Rest in peace beautiful lady and thank you for your dedication to serving others. 

Definitely a day I'll never forget...
~EM
(read more of Martoiya Lang's funeral service story here) 

Wednesday, December 19, 2012

Do You Hear What I Hear?

Holy goodness. The last few days for our country and locally in Memphis have hardly been filled with joy and the gift of giving. Unfortunately, we have been filled with sorrow and the sadness of loss. Loss of a local police officer, a mother and a friend to many. Loss of children, teachers and administrators in the ever so lively media covered aftermath of the horrific murders at Sandy Hook Elementary School in Newtown, CT. Might I add I have really not been watching much of the media coverage on that. I just can't bring myself to turn it on and listen to too much about it. The media continually makes references about the school shooting as the "2nd worst in history". Last time I checked, any loss of life in a school is a tragedy, no matter if it is 1 or 21. My prayers and heart definitely go out to all of those families laying their loved ones to rest. And Adam Lanza, whew that name is hard to type. What a troubled young man. Apparently he suffered from Asperger's which is so sad. I often wonder when things like this happen, what causes someone to take such extreme actions??? Just another reason for parents and the entire world to be truly educated about struggles they are facing whether it's related to mental, social or emotional causes. I can hardly even imagine what those families are feeling, especially right before the Christmas holiday. 

Speaking of being educated on those situations, I received a packet in the mail for Jackson's psychological testing in January. It's all starting to seem real and yet so surreal at the same time. I will say here lately Jackson has been doing pretty well. He is VERY EXCITED about the Christmas holiday. He gets kind of "fixated" on certain toys and things he wants and the other day at Target he was riding in the cart with an Angry Birds Star Wars Jenga game. I literally had to put it on the counter, have the clerk scan it and put it in a bag to make Jackson think we were buying it. We finished up and he was scouting out the bags for his game and started to panic because he didn't see it. (btw I'm becoming quite crafty on spur of the moment solutions for our breakdowns, ha) So I told Jackson let's go back to the counter and ask the lady that checked us out about the game. She knew that we weren't buying it and put in under the counter, bag and all, which I appreciated her going along with the "plan". So we look for the bag and I quickly told Jackson, "Oh my goodness Jackson, Santa must have come and picked it up to put it in his sleigh for you for Christmas. No wonder we can't find it!" He looked at me and replied, "That sneaky Santa!" Ahhhhh ha! Yes! He totally bought it and the breakdown was minimal! WHEW, that was a close one! So we left and everyday since he's been talking about that game and that Santa better not let him down, kinda deep there but I know what he means! (Thank goodness that's what his Godmother got him for Christmas so he can make sure he gets the gift! Thanks Aunt Kim!) 

Our wonderful teacher Ms. Beth! Love her!
School has also been going pretty well. He has had good behavior for the most part and we have been working for about 3 weeks on memorizing his line for his Christmas program. Last night we went to see the program at the school and I was a little nervous that he would not say his line. For the last three years he has never participated in his Christmas programs. Instead he has stood there like a statue, completely not interested and did not act the least bit phased by not participating. I have the video to prove it. 


Ms. Beth's Assistant teacher, Ms. Wendy! We love her too!
So fingers and toes crossed, my Christmas wish was that he would just say his line when it came time. I knew he probably wouldn't sing (he's not big on that) but if he would just say the line, I'd consider that a win. The program got started and the time came. I think I stopped breathing for a minute... HE SAID IT! He didn't even flinch! And when that microphone came to his mouth he said, "And Joseph put Mary on a donkey and they went to Bethlehem". (Whoooooo!) Cue Mommy tearing up. I was trying to video, cry, clap, smile... haha. I have never been so proud of Jackson. He had been saying all week he din't want to do his line, so when he did it I was so happy to hear that line! Never mind that his teacher told me after the program that there was a bit of "compromise" (aka bribery) involved if he would say his line. I don't care, whatever it takes. I know other parents can relate to that. You pick your battles and sometimes you have to give a little incentive to get a little performance and that's what we got!  
                                   Jackson and Grandpa                                                Jack & Sister Yosefa


 
















I felt I like Jackson had a "tiny Tim" moment last night. Against the odds of him saying his line, he felt the love and support of Mommy and Daddy, Hallie, Grandpa and Nona and Uncle Derek and Aunt Katie there to support him along with his teachers and classmates. He beat the odds! So, recapping the "performance of his life" here's my little monkey saying his line at his Kindergarten program and some pictures from las night. 


                                        I love hearing this little line! So proud of my monkey!

Looking forward to spending time with my family and hugging my kids countless times over this Christmas holiday. I hope everyone has a wonderful holiday season and as Tiny Tim would say... 

"God Bless us, Every One"

With Love,
~EM




Monday, December 17, 2012

Day of Silence


I know all of you share my sadness over what happened yesterday.  As a mother - I can't FATHOM how those parents must feel. I hope you will all be praying for the people of CT.  They need our prayers. My heart goes out to all of those people who will be forever changed by this tragic event. May God bless and keep your families close in his arms. I'm praying for all of you. 



On Tuesday, December 18th, there will be a blogger day of silence. We will post the button and that's it. Please try to not post anything else that day if possible.

 We are also raising money that will go to an organization in the memory of this tragedy. The organization is called The Newtown Family Youth and Family Services. Here is the official description of the support service we are donating to: 

"Newtown Youth and Family Services, Inc. is a licensed, non-profit, mental health clinic and youth services bureau dedicated to helping children and families achieve their highest potential. NYFS provides programs, services, activities, counseling, support groups and education throughout the Greater Newtown area.

ANY DONATIONS MADE TO NEWTOWN YOUTH AND FAMILY SERVICES WILL BE DONATED DIRECTLY TO THOSE EFFECTED BY THE SANDY HOOK ELEMENTARY SCHOOL SHOOTING."


Please visit THIS PAGE to make your donation.

 We can't imagine how they must be feeling, especially this close to the holidays. We would love for you to spread the word on your own blog, Facebook, Twitter, etc. Let's make a difference and use blogging in a positive way. Thank you in advance for participating.

 Love,
The Blog World 

p.s. If you would like to, copy-paste and repost any part of this, please do. Share on.

Friday, December 14, 2012

Filling in "THE" Blank

What's that expression? Close, but no cigar. Yep.... that's about all I got at the moment. (excuse the poor but deliberate English there) Call it what you want, I call it CRAP. Serious CRAP. Sooooo...... of course after I posted my frustrations about this whole "blank" that was left blank, I finally got someone to answer my call later that same day. Go figure. (more on the "blank" here)

I guess it should come as no surprise that every time I take two steps forward, consequently I take two steps back. Or at least it feels that way. Just as I think we are making "progress" with all of Jackson's testing, my phone call for answers didn't quite fill in the "blank" like I thought it would. 

Let's set the scene...me on my cell phone, pen and paper in hand ready to vigorously write every word of the conversation (you should see my shorthand from these medical calls, the dog could write neater LOL)  and then we have the nice lady on the other end of the line at the therapy office. Pretty simple, right? I begin to ask her about the ever so dark blank line from our OT evaluation and why there was no medical diagnosis on the line and her response to me was, "Oh, a doctor has to do the official diagnosis, so our screening for his occupational therapy is limited without a medical diagnosis" (Cue my interior monologue: "Excuse me what!?! I thought that's what you all were doing? She can't be serious? Is this for real?") My real response came out as "That's what I thought you all were doing?" She then went on to tell me that they cannot medically diagnose for Sensory Processing Disorder or anything else OT related, they can only do an evaluation at their office. (Ummmm, NOW'S a FINE TIME TO TELL ME THAT!) So I calmly (yes calmly) asked her what I needed to do about getting to a doctor that can give me those results so we can continue on the path of getting Jackson the testing and things he needs to succeed. We went back and forth for almost 30 minutes and to make a long story short, I needed another referral from our pediatrician for psychology testing and he needs to see a neurologist for the sensory testing. We are also planning to meet with the school about Jackson going into first grade next year, etc. which I explained to her as well. We were coming to the end of our conversation and her advice to me what that I just needed to be calm about everything but that she also maybe should have pushed a little harder for the other testing things for Jackson and that she wanted me to just enjoy my Christmas with my son blah blah blah (yep I was tuning her out by then) Hmmmm, okayyyy. And I'm suppose to still be calm? I could feel the steam starting to come out of my ears at that point. 

I sat there in silence for a minute. How would you respond if someone said "I should have pushed harder for your child"? I simply said I would be in touch with our pediatrician for the other referral and we hung up, although I was ready to BLOW up! For a minute, ok maybe a few hours, I felt like I was failing at all of this for my sweet Jackson. In my mind I was falling just short of success and getting nothing for my efforts. How could I have missed these important things. Why didn't anyone tell me we needed additional doctors and referrals? I guess I shouldn't have been so surprised. Things could only go "according to plan" for so long on this long journey. So, I called my Mom, threw myself a short pity party and put the whole conversation to rest. I just couldn't think about it anymore. Talk about having the scrooge mentality, phew. 

Fast forward, I called our pediatrician's office to send my "cry" for help because I wasn't sure what else to do. Lisa at the office, (an angel in my book) listened to every word of whining and complaining about my phone call. She told me not to worry and that she would call the doctor that we needed to see and demand that we get some answers so we can get back on track.  Keep in mind I have been trying to get in touch with this neurology clinic for a while to see a great psychologist, or so I have been told that he is. Within about three hours she called me back. Whoo! 

Now to fill in that blank. Lisa said, "You're in." THAT was the answer that was missing from the blank. We are in. Finally, we are in. HOLY...... And we are in with a good one, maybe the best? What a sigh of relief. OMG what does that mean? Well, so the neurologist that we are scheduled to see will evaluate Jackson to diagnose or rule out Sensory Processing Disorder and he will also be doing Jackson's Autism and ADHD testing to diagnose or rule those things out as well. He specializes in pediatric ADHD and all forms of Autism. (We do have a psych eval for Autism with EDFTC but not until at least February due to their physician being out on maternity leave) But Lisa's magic has fast forwarded us to another doctor for January 10, 2013. 

That's 28 days from now. Days that will go by fast, but seem like eternity. I called John to tell him and I was so overcome with emotions. I wanted to smile, cry, jump up and down, not to mention I feeling drained all at the same time. (that's a one woman circus of emotion huh? lol)  After years of wondering and searching, we are finally getting "our turn". Suddenly, my world stopped turning for just a moment. Nothing mattered at that moment except knowing my itty bitty monkey is going to get his turn. 

I could HUG and KISS you Lisa! Thank you will never express my gratitude to you. As we approach Christmas, the season of hope and my mind goes a mile a second...

Some days are a rock, some are a stone. For now, I won't look forward, nor behind us.
I am looking for hope and I have fear. What's on the other side of January 10th I do not know.
I cannot predict and don't want to think, I just want to give one final sigh of relief. 
I want to succeed as a Mom for my child, this world is beyond wild. 
And I am not scared of what's to come, though the path is not clear.
So for now, the blank has been filled and my time is served best... right now, right here.

Do not be afraid. I bring you good news of great joy that will be for all people. -Luke 2:10
~EM