Showing posts with label family. Show all posts
Showing posts with label family. 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

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

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 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

Saturday, March 9, 2013

Sad day...Count Your Blessings

So many times in our lives, we focus on everything we want/don't have/wish we had that we forget to be thankful for what's right in front of us.  A roof over our heads, a family that loves us and people that support you through the good and the bad. Yesterday  neighbor of ours lost their house in a fire. Total devastation. I cannot even imagine the sorrow and struggle for that family today. You know they have to question everything. Memories lost to a flame and belongings that are now just ashes. 

It makes you question why things like this happen. Why them? Why anyone? Why does God let things like this happen to good people? The good news is this isn't philosophy 101 or we would be here a while and we'd all be asleep before the end of this post, or angry from all the questions we have, lol. And while I'm not one to talk, I've had my share of asking the same questions about my life and knowing that God doesn't give you more than you can handle it sure doesn't make things any easier.

Last night after the circus parade of people driving by, walking by and going over to see the house, I found myself unplugging everything in the house. Things like this make us worry. They make you uneasy. They make you fear the worst. But they also make you thankful. It's a big slice of humble pie and a reminder that you should always be thankful for what you have. 

The good news is that they all made it out. They are all alive. They may have lost material things but they still have each other. Things could have gone very different for that family yesterday. Just last weekend they were celebrating a birthday for their little boy and today there is no celebration. 

What a true testament to remember that God protects you when you really need it. That even though a tragic event has happened, you still have the most important thing. It makes me so thankful for what I do have and for my family. It makes me count our blessings and be grateful that even though I wish my closet was bigger and that I wish this or that for my family, at least we have each other. 

This weekend I'm going to squeeze my kids and kiss them more times than they can count and remember and that each day is a gift from God. Our lives happens so fast sometimes and it only takes one small thing to change it all. 

My prayers go out to that sweet family. May God be with you and help you through this tough time. 

~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, March 4, 2013

Retain or Refrain? Today Autism... I hate you.

Woah. The entire month of February got by me and all I could squeak out was one measly blog post? Well, not that I owe anyone an apology, but honestly I wish I had written more. So I guess all I can say is I'll try to do better this month. Last month was not the best in the world in my book. I lost my grandmother, I have a few other personal things going on and I have been working a lot lately. But the work is a great thing! I really enjoy my job, love the people I work with and I am grateful for the opportunity to learn and retain so many new things along the way. 

Which brings me to that word.... retain. As we all learn things, we retain the things we learn right? Or at least we retain bits and pieces and maybe after a second run through we retain even more, well hopefully. The point is we learn. We learn when we are babies, we learn when we are kids and we learn as adults. Heck, we even learn when we are old. And all those things we learn give us the knowledge and empowerment to pass down all the information we have retained over the years to our kids, grandkids, friends and sometimes even strangers. 

Knowledge is power, but retaining knowledge is most often easier said than done. So easily are we distracted by the television, the text message on our phones, kids running rampant through the house, the dogs barking at nothing but their own shadow. Even in the most absolute silence, it can still be hard to learn new things. It takes focus, time and dedication to the task at hand. I'm not going to promise I was the best at any reading comprehension test in school and that even now I still have to read things two or three times before it really sinks in. (don't lie, you know you have to too) But at some point I do learn. I don't give up and I keep going until I feel that I have accomplished what I wanted to. That's easy for me to say. 

What's not easy for me to admit is that damn (excuse me, I'm a little angry tonight) word... that stupid scarlet letter "A" word is like a freaking curse on the retention meter. Today. Right now. I HATE YOU AUTISM. How dare you. How dare you keep my sweet Jackson from being able to learn. How dare you make it so hard for him. (Yeah, this would be one of those pity party, feel sorry for myself posts so read on or don't - I have to get all this out) How dare you always rear your ugly head and make him struggle. 

Simple words that he should be able to somewhat easy for him retain by now. Words that come home every week. The same words with only one or two added each week. Shouldn't be too hard right? Well it is. It's painful. It's a struggle. It's an all out WAR just to get through that list some days. And you wanna know the crappy part? It's like the refrain of a song. See that's the part of the song that you always remember, the part you retain and why? Because it's repeated over and over and so you remembering the refrain is just easier. Sure you can fake it and mumble through the verse. But when the refrain comes on, it's like a full on concert and you know every word. That's how Jackson retains these words. They have repeated themselves so many times that of course he remembers. As long as they go the same way, every time. Just like the refrain. So really, is that learning? Nope. That's called the refrain. Memorizing the word list in the order that they come home in the same folder the same printed way, and that's how he knows them. But did he really retain them? Nope. Mix them up and mess up that "refrain" order and he barely makes it through the list with heavy coaching and a LOT of patience.

I sat and watched my husband trying to help my son tonight. I sat and watched Jackson struggle, but John too. The fact that Jackson has ADHD doesn't help us on the focus meter either, but watching two people you love both struggle in two completely different and heartbreaking ways is seriously misery. I know that children with autism struggle. I know that being autistic presents it's challenges in so many environments and in so many ways. What I wouldn't give to see the world through Jackson's eyes just for one day. To know what it's like to see things the way he does. I can't even begin to wrap my head around that.  Then to see my husband. To see him struggle with frustration. To see it in his eyes that he too is heartbroken that it's so hard for Jackson and right now it feels like there is NOTHING we can do to change any of that in this moment. John would and will never give up on Jackson, but tonight he had to just walk away. And I know he walked away because it is frustrating. But I also know he didn't want to take that frustration out on Jackson. I don't blame him at all. I think he did the right thing actually. Sometimes its better to walk away and just let your other half take over, because as parents, we too can become overwhelmed. We are also not alone, so I could tell John was leaning on me to take over, so I did.

Yes, I am angry. Yes, I am frustrated. Yes, this is one of those days, that I can't take much more. I just want to punch something. I want to take all my anger and frustration out. Out on anything but Jackson. I just have to get all of this off my chest today. I never promised that all our days would smell like roses. In fact, today just stinks. In all my positive hopes and dreams for Jackson, there will come some struggle. Unfortunately this is one of the days that is not easy. I know things will get better and I do try to stay positive 99.9% of the time, but today I am taking the .01% to put out there that every single day is a fight. A fight for a better tomorrow. And though maybe today is getting the best of me, it's only today. Tomorrow will be a new day. But as I mentioned a long time ago when we started Jackson's journey with autism. I am putting it all out there. The good. The bad. The ugly. And I'm here to tell you people - learning with a normal mind is not easy. Learning with autism is an entirely different ballgame because you are down 10 points before you ever start. Retaining the little things that come so easily for the rest of us, is like scaling Mount Rushmore for Jackson when it comes to retaining anything he learns.

Singing my refrain today for sure....

Today. Right now. I HATE YOU AUTISM. How dare you. How dare you keep my sweet Jackson from being able to learn. How dare you make it so hard for him. How dare you always rear your ugly head and make him struggle. 

~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

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