Showing posts with label Autism. Show all posts
Showing posts with label Autism. 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

Wednesday, May 22, 2013

Life Has Been Loco & Tomorrow - Tears

Oh my goodness! My poor poor blog! She has taken serious neglect and abuse the last ohhhhh 6+ weeks!!! Ready to hear my self-defined "good enough excuses" as to why? Even if you don't care, I'm going to at least attempt to make myself feel better as to why I haven't blogged in a while so here goes. (Deep breath...) Two monkey's birthdays, a baptism for a godchild, 3 weddings, 2 baby showers, tons of autism updates, my Mom's birthday, the Grizzlies in the NBA playoffs, looking for a new house, and my husband traveling so much I barely know the city he is in and you see where my  time has been the last 6 weeks. PHEW! I'm tired just putting it all down. Sooo with all this time going by, I sure do have a LOT to update on. 

Let's just make a list of all the post updates I need to do shall we? (I tend to like to check things off lists, it makes me feel like I'm getting something done so maybe this will publicly hold me accountable to make me catch up, ha!!)

  1. Mine and John's godson Tucker's baptism weekend in D.C.
  2. Hallie's 4th birthday
  3. Autism and school updates for Jackson (that will have to be a post or three probably, lol)
  4. Autism Fundraiser with the Memphis Redbirds 
  5. Grizzlies playoffs
  6. Baby shower for a bestie! (We're adding another girl to the fam!)
  7. Jackson's 7th birthday 
  8. Doctors and Medicine Updates for Jackson... this one's gonna be a doozie!
  9. Therapy Updates and the summer game plan
  10. The Never-ending house hunt
Are you tired yet!?! I am. I probably have a couple more I could add to the list, but I think that's enough for now. But, at least you know I've been rather busy and not just absent and lazy right? 

Anyway, moving on from my mountain of a to-do post list...today is Jackson's 7th birthday. I have a 7 year old, what!?!? It feels like only yesterday he was this little tiny baby with bright blue eyes and perfect round little face were just looking at me with wonder and excitement to be in the world. I miss him being a little baby. He's not so little anymore, but he's still my cuddly baby. Tomorrow will be a rough day for me I think. Jackson graduates from Kindergarten tomorrow morning. I could not be more proud of him and I am so excited to see what his future holds. I know I am going to cry like a BABY! I have already teared up a couple of times this week and it's not even graduation yet! (I need to get a grip, I know) I decided that since his teachers/therapists/aids/etc are so important to his success along this long journey with autism, he needed something to always be able to carry a little piece of the people who are so important to his life. I bought him the Dr. Seuss book "Oh the Places You'll Go" and wrote a letter inside to him from me and J. Here's a pic of the book and letter. 




Tonight we'll be celebrating Jackson turning 7 at home with mini cupcakes (since I sent 30 big ones to school today and we did a big bowling cake over the weekend) and whatever he wants for dinner - now don't get too excited, it'll probably be the staple meal of mac-n-cheese and chicken nuggets, his favorite meal he eats probably at least 4-5 times a week for dinner, but hey it's his day and we are gonna do it the Jackson way! Happy Wednesday and Happy Birthday Jackson! We love you more than anything!!! You will always be Mommy's little monkey! 
Made cupcakes for the class per the birthday boy's request! 
Xoxo~
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

Wednesday, March 27, 2013

No Words

Hello fellow lovers. Today I can't find the words. Maybe because today has been one of the hardest days for me and John throughout this entire hellacious autism journey for Jackson. It will all come to me in time, but today I am/we are overwhelmed with emotions. Everyday is a fight, but today we were fighting with our hands tied behind our backs. In learning more everyday about autism, the quirks, the good, the bad and sometimes the really bad, today was a rough one  friends. I definitely have a lot of emotions running through my mind and as my mind races, I can barely put a sentence down. 

I guess some days you just don't have the words. 

Switching from my feelings to something bigger than me, Autism Awareness Month is fast approaching and April 2 has been declared as Autism Awareness Day in Memphis. If you live in here, you should be there for the Light it Up Blue Event!!! I can't say how important it is for everyone to become educated about autism and just how much it affects so many people around you or maybe even you directly. I think any parent that has a child with autism would second that. 

Until I find my words.....

~EM

Wednesday, March 13, 2013

Even Autism has Winning Odds

It's like the lottery. Will you defy the odds or will it just be another day of numbers on a line that make no sense but on the flip side comes with a huge reward if you're lucky enough to guess right. Never knowing what tomorrow will bring with autism (or Jackson, ha) it's like a daily lottery in our house. Some days make no sense, some days you get a few things right and some days you hit the jackpot (or at least in my mind we do). 

Coming off a weekend that didn't go so hot, I was worn out. Not to mention, this week is Jackson's spring break. He was originally registered for a camp where his surroundings would be familiar, the people were mostly the same and he was comfortable. Then it came. Camp cancelled. Dun Dun Dun!! CRAP! Well, now what? After hitting a few walls searching for a different solution, we decided to gamble just a bit and register for a camp at the YMCA. Jackson has never been there before. New places, faces and strange routines don't go in the same sentence as autism. So Monday rolled around and we loaded up to go. I spoke to the camp director who assured me they would take good care of him and that he would call me in case of a crisis or outburst. Needless to say I was just waiting on the phone to ring all day. 

Ye of little faith I am! Jackson always amazes me and for whatever reason he is having a great week with no set schedule, all new people and no sense of normalcy. Excuse me what?!? Where is my child??? That is not the Jackson I know but man what a relief! Isn't funny how we as parents put so much pressure on ourselves when it comes to our children. Just when you think things will go the worst way possible, they do great. Maybe I should give him more credit?? I know he is stronger than I could ever imagine. I just never would have guessed he would be this happy about something off his normal, tired and definitely beaten path. Maybe I should give myself a little more credit?? Maybe we are getting better at preparing for everyday change?? Who knows! 

Although I am not sure we are ready to test this uhhh few successful days as being ready to take on the world, we'll take small bites and victories when we can get them! It just seems as though this week Jackson has beat the odds of one challenge autism presents him with. Don't worry, our quirks, obsessions, and redundant eating habits at home are all still very apparent, but maybe this week is exactly what he needed. A little change of pace from the everyday "norm" never hurt anyone right? 

I say this today and tomorrow will be a disaster (LOL) but as always around our house... one day at a time. I'm just so thankful and proud that he made it this far since the last "camp" he attended outside his comfort zone, he was kicked out of before Wednesday was finished for behavioral problems. That was a tough week and a tough pill to swallow (mainly for me) because you only want your kids to do well and be happy. He was neither at the camp we got the boot from which broke my heart for him and I also felt (at the time) like I had failed him. (this was also pre-diagnosis) I guess we have come quite a long way since then. To all you other parents out there that have kids with autism I encourage you to keep going, don't be scared to try new things. Some will work and some won't and that's ok. Just don't lose faith in your little one because just when you least expect it is when they will surprise you the most!

And so far I'll take this week as a lotto jackpot of epic proportions! 

~EM

Tuesday, February 19, 2013

Can You Turn on the Water Please?

Ok, normally the whole "turn the water on" line comes with the general thought of someone going "tee-tee" and needing the water on to go right? Nope. Not for us. I'll admit that all things autism have taken a backseat on my roller coaster the last two weeks. First, my grandmother passed away on Thursday, February 7th. She was 98 and god love her, she had one long and awesome life. Exactly a week later on Thursday, February 14th her sister passed away. (Happy Valentine's Day, huh?) Check please! That's enough of the family passing away for a while if you ask me. Speaking of Valentine's day, I hope everyone had an enjoyable Valentine's day this year. I'll post my cute idea that I made for teachers gifts this year when I get to it. (I need to add that to my to-do list or it will be Christmas before I post it, ha) What did we do for Valentine's Day? Absolutely NOTHING! We literally went to bed and slept and that was perfectly O.K. for this exhausted Momma. And there you have it... the recap of my last two weeks in about 6 sentences.  

Back to the point of this post. I have been a little M.I.A from the blog world the last few weeks, but cut me some slack, it's been hectic! I kind of feel like things are getting back to normal though. John's out of town for work until Friday (weird that's what I consider normal isn't it?) and the kids and I are back to my drill sergeant ways of having things on a list and checking them off so we can survive til' the weekend. Sooooo I got back to researching autism and looking for new reading material and resources, not to mention making my lists for the city schools application for therapies they offer to private school children with disabilities (who knew right?) but that's another post (dang make that two things to add to the to-do list). Tonight I was researching autism and sleep- or lack thereof. Jackson often times has a hard time falling asleep and will sometimes lay in bed awake for hours, yes hours before he finally conks out. 

He then wakes up the next day with bags under his eyes and super lethargic to get moving in the morning. Sure doesn't speed up the process in getting ready for school either. So I wanted to see if there was anything out there to help with the whole "sleeplessness" that he seems to struggle with besides a dose of melatonin every night. Meds are not my first choice in helping him so I am always looking for other ways to achieve the same thing the meds do, well.....minus the meds. 

I came across several home remedies, do this, tried that's of things parents, doctors and anyone remotely internet savvy has posted about on the subject of autism and sleep and the reality is well, kids with autism just have a hard time sleeping sometimes! From weighted blankets to back rubs to black-out curtains, there were lots of suggested aids. I did find that some people recommend noise machines, sounds, etc. So I thought, what the heck. I got on my spotify account and started searching "nature" for any noise-making-theraputic-nature-sounding-ish (that's the technical term there :) uhhh music that I could find. And I found this waterfall earth track that's about 4 minutes so I added to a playlist for Jackson, put that sucker on repeat and told him to lay there in his bed and just listen to the water. 

Once he is asleep, he sleeps like a ROCK (no idea who he gets that from - Dad), but until he falls asleep he hears every creak and crack and gets distracted by even the heat cutting on in the house. It really sounded like a huge faucet on full blast with the volume so loud. But he seemed to lay there and listen and so I left him in his room with faux Niagara Falls, HA! I came back 10 minutes later to find... A SLEEPING BOY! Whoo hoo! Wish I had thought of this about 3 years ago to help him get to sleep faster! Who knew the simplest thing would work for him. 

I am hoping this will be one of those little victories we can check off the list of "things that help with autism" for Jackson, so we'll see if it has the same affect tomorrow or if he gets bored with the whole pretend waterfall. Since I've recently been surrounded by all things "life" that are sad and hard to deal with lately, I thought I'd post on a small victory of a happiness. A sleeping boy and a happy Mommy.  

Fingers crossed for continued running water and a sleeping boy. 

~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 23, 2013

The Mummy Test

Ahhhhhh... the MLK holiday. Yes, I was off work and yes I spent the entire day with my two little monkeys.  I don't get too many days at home with them (which may be good for my sanity to some degree, ha) but I often take then time with them when I can and love every minute of it. We stayed in our pajamas til noon, yep noon. Can't say I do that too often either, but trust me, I'm not complaining about having a few lazy hours.

Jackson had a birthday party to go to on Monday for his friend Peter, so at 2pm we headed out to Pump it Up to celebrate and exude some energy for a little bit. Jackson was having a good time for about the first 45 minutes, but a room full of wild boys, bouncing blow-up slides and pegging heads with bouncy balls and you can probably guess how that was bound to end.

Before we reached that point, it was time to leave and head to the doctor. (Phew! Crisis meltdown averted!) Jackson had a EEG (more on EEG here) test scheduled for 4pm. Don't think I got off that easy however. A full on meltdown over missing the cake at the party was the meltdown culprit all the way to the doctor. Ugh... some days I need a raising window in the car. You know like the ones in limos so people can block out the sound from the back to the front. I would have given my left arm for one of those windows during that car ride. We got to Dr. Eastmead's office in Midtown and in we went. Normally I don't like to take Hallie with me, but on Monday she was in tow since John was out of town for work. I was instructed not to give him any caffeine 24 hours before the test, no this, no that blah blah blah, but let's be serious. Jackson is like an operating caffeinated jack-rabbit without the caffeine. Do you really think I give him that stuff doctors??? Really!?!? Ok ok, back to the test. Just had to get that out there. We didn't wait but maybe 3 minutes before they called us back to get started. Lots of gooey gunk, a bazillion wires later and a full mummy headdress and we were ready to go. 

Not to my surprise, Miss Hallie felt the need to be right up in the middle of the action. She held Jackson's hand the whole time and told him, "You're doing reawllly good Jack". I was so proud of her. Only 3, but man she is well beyond her years. She amazes me everyday with how mature she is for her age. She never faltered the entire test. In a way I felt like she relieved me of some of my Mommy duties for this test. She was being the strong warrior for us both and honestly, I let her. It lasted about an hour-ish and Jackson ultimately fell asleep during the test, which he was suppose to do for the latter part of the test. 

As the technician warmed water in the microwave Hallie continued to ask questions and be involved. "What are you going to do with that?", she asked the technician. She told Hallie that was to help remove the sticky stuff from Jackson's hair. Even though that was the answer, she still stared a hole through the technician through the whole process. (ha, my little protective one) Even the technician mentioned how "aware" she seemed to be during the whole process. Normally I don't post pictures from any testing but I feel like this is all part of the journey, so.... head wrapped "mummy style" and another test we can check off the list, here's my little mummy during his EEG. 

Poor thing, he was NOT a happy camper by the end of this experience. I tried to explain that it was just some wrap and that it's ok, but huge shocker here... he didn't care (or even understand). All he knew was that he wanted off that gurney and he wanted that head wrap off! And fast! So fast, that he tried to "assist" in the removal process, which was all but a huge fail of frustration for him.  

On a lighter note, Jackson's latest trick of the trade is to name every female he meets "Woman". So as he was being set free from the mummy gear, he was yelling at the tech saying, "I don't like this you Woman!!!" (lol) Even though it's not funny, we were both laughing at the moment. It was cute, sweet, innocent and typical Jackson in every way. I am more than pooped this week and it's only Wednesday. The results from this EEG will be like most of the other testing, we'll be waiting for a bit to hear results. (big shocker there) Oh well. Glad to have this one out of the way and I think my little dude would second that.  

This will sound silly, but I'm glad Hallie was there on Monday, even if she is 3. I talk to her about Jackson a lot because believe or not, I think she gets it. My very own little pint-sized shrink ha! So thanks to my little peanut for being my rock on Monday. She's the best!

~EM

Saturday, January 19, 2013

Just When you Least Expect It

Words. Ohhhh the words. I can't find them. I've had a mean case of writer's block this past week (maybe by inadvertent choice to some degree) But I need to find them. I have been searching for them all week. Multiple times I have thought I was ready to write it all out. A thought or two will come to my mind and I think about writing it down, but end up forgetting the thought 10 minutes later. A good indication I wasn't ready to say what I'm thinking or feeling.  I've wanted to put it all on "paper", but I haven't been ready. Today, I'm trying to be ready. Since our last appointment on January 10th, our lives have changed forever.

The whole idea of "for better or worse" at the alter on the day you marry your best friend never includes the fine print of life. Today I'm living the fine print. All the things that no one tells you will be part of your marriage or life together. All the things that no one can predict or guarantee from day to day. That's where I find myself right now. The best part? I AM NOT ALONE. Because "for better or worse" I have the best man by my side. My partner in crime, my partner in love, my partner for life. 

And with that partnership comes this post. Together. I usually write all of these myself, but today I need my other half to help me. So here we go...

Sitting here in tears, the both of us, John and I write to you. To say thank you for your support. To say thank you for your continued love. To say thank you for reminding us that WE are not alone. A dear friend of John's told him this past week, "God never gives you more than you can handle". Those words are so true. As people we all handle life's trials and tribulations in our own ways, we all react and process differently. That's what makes us who we are. That's what makes Jackson who he is. 

Going in with the expectation of "every appointment is a waiting game" I had no idea we were going to leave there with answers that same cold day on January 10. The neurologist asked me what I thought Jackson had. My reply, "Oh, I don't know" He said, "Yes you do, now tell me." I said, "I think he is somewhere on the autism spectrum and maybe some form of ADD. He replied, "You would be correct". 

His words, "Jackson has Autism. ASD (Autism Spectrum Disorder)-High functioning. (but he didn't stop there) He also has ADHD, OCD tendencies and Asperger's". Holy Sh*t. Didn't see all that coming. (I know Aspergers is commonly known as a form of autism, but our neurologist told us it will soon become a completely separate diagnosis away from the autism spectrum all together and Jackson has all the signs of both, independently and together all in one, but we'll sift through those details in another post). As Jackson and I left the office with reading materials, appointment slips, a prescription paper and more appointments scheduled, I felt frozen. Frozen in that moment. How long have we waited for someone to tell us what we have felt for so long. And how does it feel now that I not only am I hearing it, but it's on paper. I sat in the car for about 10 minutes in complete silence staring at that paper before I called John to tell him. I felt relief, I felt overwhelmed and I felt scared. 

(John's beginning) We have been keeping this very quiet since that day only telling our immediate family and a couple of very close friends.  Not being quite ready to reveal this to all of our other friends, coworkers, extended family, we have been coming to grips that we have a SPECIAL needs son.  The reality of the situation is still sinking in, but we need to be open about our feelings so we can properly handle the situation going forward.  Jackson is SPECIAL.  I mean that in every way possible.  He is truly remarkable.  He makes us laugh hysterically, cry, angry, frustrated & happy.  He is exceptional at memorizing movie lines (gets that from good ole Dad), putting together puzzles (thanks Mom), painting (well, art in general), loves sports, working electronics (future engineer, maybe??), giving the best hugs, and so much more.  It is our purpose in life to make sure that he is given every opportunity to maximize his enormous potential.  Thanks to my best friend and loving wife, Jackson has already starting down this path.  I don't know what I would do without her leading the way with all of the testing and therapy Jackson has undergone up until this point.  There will be more therapy going forward, and we are convinced that this will all pay off in the end.  Speech, Occupational, & Behavioral Therapies are just the starters, but we are so fortunate to have some great people to work with at the Dr. offices and at Jackson's school. 

It is such a relief that we finally have answers (some not surprising, others a little surprising).  For example, I didn't think Jackson would have Aspergers (neither did Ericka), but the more that I have read into it, the more it makes sense.  While I'm sure that we will have more ups and downs along Jackson's path, it just reminds us that we are blessed with such a sweet, caring, lovable son.  As a dad, you never want to have your son/daughter go through anything too trying at a young age as it is hard to comprehend/deal with later in life, but with Jackson, he processes things much different than most the rest of us, and I think he is completely oblivious that his path will appear much different than his friends.  In a way, I think this is a really good thing.  I don't want him feeling "different" than everyone else.  There is a difference between "knowing" you're different and "feeling" different.  

Okay, going to be protective dad here for a minute.  My biggest fear is that other kids will tease/make fun of Jackson through life because he is different or because he reacts to situations completely different than them.  But even more importantly, I don't want Jackson to lose any self-confidence.  There is a time in our lives when we feel like we can "do anything" "be anyone" we want to be, and I don't want Jackson to use his hardships as an out, but rather, I want him to own his uniqueness and channel it to being the best he can be.  I know he has all the potential in the world, and as parents, we plan to give him all the tools necessary to get to the top of the mountain. (John's done typing now, lol)

So, there you have it. Feeling as though our journey has been going on forever (because it HAS), our journey is just beginning. Just when we least expected it, we have answers, just when we least expected it, we are ready to finally put it all out there today. Our story will continue and I hope that through this experience with our little superhero we can inspire you to share our story with other people and to always fight for your children and to stand by them through every part of their lives. Thank you to my amazing husband, who agreed to put some of his thoughts in this post. "For better or worse, in sickness and in health, til death do us part" my friend.


Blessed are you who take the time to listen to difficult speech,
If I persevere, I can be understood.
Blessed are you who never bid me to "hurry up"
Or take my tasks from me and do them for me.
For I often need time, rather than help.
Blessed are you who stand beside me as I enter new and untried ventures, Myself and You.
Blessed are you who ask for my help.
For my greatest need is to be needed.
Blessed are you who, with a smile encourage me to try once more.
Blessed are you who never remind me
That today I ask the same question twice.
Blessed are you who respect me and love me just as I am.
-Author Unknown 

To our sweet Jackson: We will stand by you forever. You amaze us everyday. We love you.
~EM

Thursday, January 10, 2013

It all happened so fast

For such a long haul process of insurance company debacles, answering machines and more paperwork than I care to admit that I have filled out, our appointment today was anything but a process. There is a good and a bad to that. Scratch that. There is a good and a shock to that! But before we get to that, I feel like it's important to record our experience leading up to this morning.

Last night I was on Skype with two of my besties (and btw we need serious chat connection help, HA) After we finished up I got the kids ready for bed and Jackson was unusually really awake last night. So awake that it was almost 12:30am before he finally conked out.

Also playing the role of insomniac last night, 2am rolled around and I found myself tossing and turning. Staring at two little monkeys that sleep with me when our sweet Daddy is out of town for work. I finally fell asleep and got up this morning to get everyone ready. My hands were literally shaking as I was brushing my teeth, my neck was hurting and my body was stiff. Translation: I WAS STRESSED. I have known for a long time that this time would come, but today came quick.

We dropped off Hallie and off to Midtown we went. Once we got to the office, I was asking someone for help on which floor we were headed to and little did I know, my little monkey was already on the elevator and the door shut before I could stop it!!! Seriously!?! Thank goodness we were early and had some extra time, but more importantly where was my CHILD? Well... he took a trip to the 12th floor where a nurse found him and grabbed him, stuck him back on the elevator and brought him back down to the security desk before I had too much time to really PANIC. Of course Jackson was giggly and couldn't have cared less that he took a trip on his own. I was just thankful he didn't pull a typical stunt of hitting every floor in the elevator and causing a full blown search party this morning.

So, we finally head to the 14th floor for our appointment and the wait to be called back. Jackson did NOT like the office or the place so he was laying in the floor...whatever. One small comfort was he wasn't the only one laying in the floor or lingering in strange corners of the office. I'm pretty sure everyone in that waiting room today was there for something close to the same reasons we were. We finished up about 2 and a half hours later, but it seemed like five minutes. The whole appointment and time with Dr. Eastmead happened so fast, almost like your wedding day where you are there but almost out of body and before you know it your day is over and all you have is the blur of memories you created along the way.

I'll kick in the buzz kill here and say I am not quite ready to spill the beans on our appointment today. I need some time for our visit with Dr. Eastmead to sink in. I'm not sure how long it will take me to divulge it all, but we do have results. The marathon is finished, the race is over and together Jackson and I held hands leaving that office. We crossed the finish line.

Today is bitter sweet. It's the end to a long fought battle and the beginning of the rest of Jackson's life. Stay tuned for the results, but right now, I just need time.

So proud of Jackson and so happy to be his Mom. I'm a lucky lady...
~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 

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. 


video
                                        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




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


Tuesday, December 11, 2012

Results Minus the Results

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

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

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

So on to the meat and potatoes of results. 

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

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


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

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

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

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


MD:____________________________________

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

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

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

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


MD: Milford Done

~EM