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

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

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