Saturday, December 6, 2014

Yelling at the Pieces



This week I was given a compliment from a fellow parent, he said that he admired my patience with my boys. I should have said, “thank you” but instead I think I mumbled something about my patience being long fought and hard won. This is true. In the past fellow parents have not been as kind as I was dealing with tantrums and rages and just trying to get though the moment. It has taken me YEARS to have the level of patience I do now but, in no way, shape or form do I have an extended patience level. In all of thirteen years I have amassed a level which can last just 45-60 minutes, max. So yes, that compliment was very nice and has made me feel very good this week. I am just thankful that my younger son's appointment was only 50 minutes long while I waited in the lobby with my older son. That I did not reach my breaking point thus forcing this fellow parent to retract his praise and consider me to be the lunatic that I am the majority of the time.

Fast-forward to today and I am at odds with my own frustration and anger and I want to YELL at the thing that has brought me to this point. I cannot. They say that Autism is like a puzzle and “we'll keep trying until the pieces fit!” but there are other pieces at play in this puzzle that make up the small bodies in front of me. One of our biggest obstacles this year is helping my 10 year old traverse life with his puzzle pieces of Autism, severe ADHD and Anxiety Disorder. Its a balancing act of figuring out which puzzle piece is being played at that moment, taking into consideration the needs of that piece all the while trying to balance out the other pieces at the same time.

I am frustrated with Adam because we attended a Lego event at a busy store. Unbeknownst to me he brought along a small Lego creation of his own along with two transformers all shoved into his pockets. As we were checking out sofas after the event, he started pulling out these small toys with many pieces and parts. With the new lego creation from the event, he now had 4 things in all AND a pair of noise canceling headphones. As soon as I noticed the toys coming out of the pockets I gathered everyone and we headed out of the door, I wasn't very kind about it. My frustration was evident.

Bringing things along is not new and its not uncommon for kids with Anxiety. They need something familiar, something comforting. My own anxiety of leaving things behind and having my son freak out over a lost toy does not play well with Adam's packrat anxiety reduction technique. Once everyone was back in the car we headed out to lunch, my son was happy with his new Lego creation and my frustration level went back to a manageable level until...

We arrive home and I'm unloading the car, its raining and I want to make sure 2 Lego creations and 2 transformers are stuffed back into pockets as well as the library book my oldest brought along with him, my handbag and cell phone and...”where are your headphones?” The last time I noticed them, they were sitting on a table in the furniture section of the department store while I was shoving toys back into the pocket of my youngest's cargo pants. My frustration level went right back to where it was before and then climbed a few levels beyond that. I'm saying things like, “WHY did you bring those toys...” and “YOU KNOW you aren't supposed to...” and “I'M SO FRUSTRATED with you...” And my son got upset, actually both of my sons got upset. My youngest because I was frustrated with him and my oldest because he didn't understand why I was upset and he was afraid he did something wrong.

And I got mad at myself because I wanted to yell so freaking bad!!!! I wanted to get mad and try and get him to understand everything he did wrong and to learn this lesson so that **I** wouldn't get frustrated again. Ummmm... see that there? I, Myself, I, I, I... Wow. Yeah, that was realization #1.

Realization #2 came a few minutes later after I had shut my mouth. Getting angry at a piece of the puzzle is not new to me. I have plenty of “I hate Autism” days, I let myself have that anger and then remember that no matter what I am feeling, the boys difficulties far far outweigh my own. Today was the first time I really really needed to be angry at ADHD, the piece that was forgetful, the piece that left behind the headphones, the piece that can't think beyond the moment and see how much they will be needed 15 minutes, 30 minutes or even a day from now. So I thought, yes, lets be angry at ADHD! So I started in with the “You know...” and “I'm so frustrated...” but I forgot about the anxiety piece.

He got mad, he got sad, he got frustrated as all these pieces took center stage in defense of his choices. As I watched this unfold I realized that I cannot ever get mad at just one piece. They aren't removable or interchangeable, they are always present and together they make up a really awesome (sometimes frustrating)10 year old. I love that whole little person, every piece and part, with my whole heart. Its unrealistic to think that I won't ever get mad or frustrated again but I will now and forever remember that getting mad at just the ADHD makes about as much sense as being mad at the headphones that were left behind.

We all hit the reset button now. The Hubs went back out in the cold rain for the headphones, we all had some quiet time and peace is once again reigning in the household. Lets hope it remains for the rest of the day, the likelihood of which is about as much as the headphones walking home on their own.

Wednesday, October 15, 2014

Smiles Staring Back at Me

My oldest son with Autism goes to a special school. We fought for this school and it has been an excellent placement for him, he is calmer and happier. Every Wednesday they have early dismissal and I choose to pick him up on those days and save him from his extremely long bus ride (1.5-2 hours). Spending these hours with just him is a special treat for me and I hope one day he will look back and consider them a special treat for himself as well.

Waiting for him today I look over the picture wall in the lobby, as I do every single Wednesday. My son's classmates faces and smiles stare back at me and I smile. I smile every single time. They are learning, challenging themselves and working so hard and they are smiling and I love that so very much.

Sadness sneaks up sometimes. I'm going along the routine and out of nowhere the unfairness of it all hits me.  It occurred to me in a flash that I am seeing faces of kids of all ages, beautiful faces and huge smilies and I'm sad. 

This one is tall and strong, he is the quarterback of the football team. This one is smiling while talking to his classmates, they obviously respect his opinion, he is most certainly the class president. She is standing at the board doing a math problem, she is that beautiful and smart girl who is universally liked. This group of guys makes up the drum line in the marching band, they rock! 

Except none of this is true. 

What makes me so sad is that it could be true! It should be true and I am standing there looking at their faces and wishing so badly that it were true. 

I know this sadness will pass, the "what could be" will pass along with it. I know this is the grief cycle repeating itself once again and once I get through this part, I will get back to acceptance. I look forward to that, with acceptance I also gain strength. I'll be the first one standing next to my beautiful boy saying, "You want to be quarterback? Lets do it!" but for tonight I will think of those faces and those smiles and wish that all their dreams could come true and that they keep smiling along their journey. 

Saturday, August 23, 2014

Pre-Back to School... Analyzing

We've been talking about going back to school this week. A lot. My 10 year old's anxiety hit the roof about mid-week and, in contrast, his 12 year old big brother can't wait to go back. It's made for a polarized house of ups and downs and I'm getting motion sickness.

My youngest struggles in school, Autism + ADHD + Anxiety Disorder (NOS) = a very stressful school experience. He struggles the most with Math although other subjects have specific difficulties as well.

We did some chatting specifically about sitting in math class where I tried to get a feel for what his issues are outside of the learning material, should I ask for his seat to be in a specific spot? Does he need a different type of headphones? Would he benefit from a different kind of paper? Pencil? All that kind of stuff. Basically, can I minimize every other issue so that he can focus better on the subject in which he struggles most?

It was then that I realized a big issue, something that was ESSENTIAL to my own understanding of mathematics, something that could make a fundamental difference:


THERE IS NO MATH TEXTBOOK

 I hate to constantly compare my education in the 80s-90s to education today. There was a lot bad about my education and a lot good but from 3rd grade on I always had a textbook. The idea was that the student would read the 3-4 page explanation of the math principle, which included vocabulary and example problems, then the teacher would go over it in class with more examples. Then we would complete some work relating to those problems. If I didn't understand the vocabulary, I could turn back 2 pages and look for the word in bold. If I forgot a step in solving the problem, I could turn back a page and look for an example that was similar to mine. If I took math homework home with me, the book came too. The fact is that I always had a REFERENCE to the material I was supposed to be learning until I was tested on it.

My son has no text book. When I volunteer, I make copies of worksheets, I tear pages out of workbooks but I've never seen a math book (spelling book, social studies book, language arts book...etc) on/in/near his desk.

This makes me wonder about the progression of education, I get that curriculum is different now and teaching is vastly different than my experience but at what point did books become obsolete? Where are the references and the examples that would help the vast number of visual learners like me and like my kids. Being able to see a page in a text book again and again, allowing a visual learner to take a mental "snapshot" of what is on that page is kinda key to someone who thinks in pictures and/or is a visual learner. You cannot do this with a white board or a computer screen unless you are willing to flash the exact same (to the detail) picture/explanation every time it needs to be referenced by every child. I can remember being in the 5th grade and closing my eyes during a test so that I could picture the page of a long division example, I could even remember the page number. I would have failed that test without that picture in my head.

In considering this issue, I attempted to look at it from the school's perspective as well.  Books are expensive, I get that, I'm a book lover from way way back.  I also hear from teachers that there is a paper shortage. That they are allowed ONE case of paper per school year. Should they require more, they either have to hope a parent donates some or buy it themselves. I'm not at all surprised at the paper shortage when I'm volunteering and making 30 copies of 10 worksheets per week just for math lessons.

The steps to solving a math problem out of a text book:
pull out lined paper
open text book
read instructions
copy problem
solve
repeat
(**no copy paper required, lined paper is cheaper, books are a reusable resource**)

There were a lot of things wrong with the education of the 80s and 90s, access books and reference materials to every student was not one of them. I'm not going to lie, I'm kinda pissed about this. There are many changes to today's education that is in direct contrast to my sons' learning styles and I'm starting to think that the worst of them all is something that should be the easiest to provide. Technology is great, no doubt, but arguably the greatest invention of all time, the invention that spread the most information ever through out the entire world and through out time was the printing press.

Thursday, August 7, 2014

Things That Make Him Happy: Ravens Football


Football. He loves football and the Baltimore Ravens in particular. His interest in football has been something wonderful for him and for our family. Football an "acceptable obsession" he can go to restaurants with the game on the big screen and can cheer along with a crowd, he gets high fives from strangers and he can cheer his favorite team to victory with everyone else. It can be magical.

Over the last 5 years there have been many many teachable moments about yelling at home and in public, keeping calm during tough wins and far more conversations about certain commercials played during breaks than I would like (beer and boner pills are fun to explain). We look forward to the season and proudly wear our purple and black and every year I put together Cameron's NFL game book.

In the game book, every match up is listed and we spend a good amount of time during the week making our "picks". If you visit us during the season you better be prepared to make yours as well and don't worry, Cam will write it all down so your win or loss is forever notated.

Last year we stepped it up and started a small fantasy football league with friends and family. His ability to pick winners is awesome and The Hubs had to work pretty hard to squeak out a win in the league.  This year is my year though, I can just feel it! With a team name like Fighting Fluffypants how could I lose??

All of this is on my mind today because it's the first preseason game for the Ravens, Cameron's binder is ready to go and we are going to the game!!! So short blog today because we've got to get to M&T Bank Stadium to cheer on our team. 


**This is hopefully going to be a re-occuring topic, I would like to share "things that make him happy" and "things that make my life easier" in short but fun blog posts. Who knows, maybe we'll stumble across something that makes your life easier or something that makes you happy as well!!**

Sunday, August 3, 2014

My Highway


A few years ago I was trying to explain to my psychologist during my weekly "sanity checks" exactly what it felt like to have two kids with Autism. How do I perceive the past, present and future? I couldn't exactly explain it so instead I told her about the picture I had in my head.


I'm on a highway and it's a relatively sunny day, it's not blindingly bright but its also not rainy either. I can see for miles both in my rear view mirror and ahead of me clearly without squinting. The road is relatively straight, not a lot of curves but a few hills are both ahead and behind me. The car I'm driving feels comfortable, cozy, right... I've chosen this model well. Theres not a lot of traffic on the road with me. But there is something that is missing, something that I didn't notice for miles and miles and miles and now that I do see it, I can't see past it. There are no ramps on this highway. No on ramps, no off ramps. It can make me feel alone even with other cars on the road. It can make me panic knowing that if I run out of gas, there's no place to stop for more. It can make me feel isolated, there is only a cell phone in the car with me. Without technology I would have no way of communication. I can speed up, but where am I going even if I go faster? I can slow down, but what am I delaying? I can stop but that feels like giving up and it is a far worse feeling than just continuing on, even when I don't know what is at the end.  

So some days I'm driving along, my path is set and I've hit cruise control. Even going over a few hills, I'm still making good time. I'm comfortable, content.

Then there are other days, the hills are overwhelming, there aren't any off ramps and I'm very near running out of gas. I don't even know how I got into this road in the first place!

And it feels so unfair.

There are days when I know that I am here to be my boy's mom, that their future lies in my hands. That every win for them is a win for me. Sure I have some hobbies and distractions but ultimately the upcoming IEP is going to be more important than the latest popular fiction novel just released by my favorite author. The state waiver renewal, paying the therapy bills, budgeting for next month and researching trusts and power of attorney is more important than scrapbooking our vacation. Researching supplements, newest clinical research and books written about Autism is more important than getting the ingredients for a new recipe that I would like to try. It has to be, I have to keep moving. Not that I never do those things, they just aren't my priority. They can't be. I can't stop on the highway, there is no progress made in park.

The boys' diagnosis gave me the path, it took my scrambled interests, my desire to learn and all the many many subjects I have majored in college and studied in my free time and gave them a direction. It gave me a voice, it gave me this blog and it gave me you, a reader. You've heard me say that sometimes things are a happy-sad. This is a good-bad.

Am I ever going to write the novel I have planned in my head for a decade? Probably not. Will I ever open that pie shop whose business plan was my final project for my business degrees? Only if it is what my boys wish to do. Will I ever go back to college for my Masters degree? Not likely.

I've always thought that it didn't make sense to complain about something that you weren't willing to change it which is why I couldn't find these words to explain my highway. In my head it sounds like complaining but there is absolutely nothing about this journey that I would change. I love and adore my boys, every day they fill me with pride and strength. They are the fuel that keeps me going even without any gas station exit ramps.

I don't know what is going to happen to my highway, maybe there are some side streets ahead, maybe there are some scenic overlooks worth a stop. I just don't know. Right now it's open road and that is very much a good-bad, happy-sad.

Wednesday, July 9, 2014

The List Can Go On and On... But Here's a Start

I love every single blog post I see about 6 Secrets Special Needs Moms Know But Won't Tell You and 10 Things Autism Parents Wish You Knew. I read them and nod and think "yes, yep... true..." Then of course there are the tongue in cheek posts referring to the need for a whole bottle wine glass, a tee with a message or (and!) a nap.

Some days all I want is a nap (after drinking my wine while wearing my tee!), is that really so much to ask?

But most days I live in reality and realize that nap is never coming so I try and focus my efforts on things that would really, truly make my life easier.

  1. A table and chairs with lamp light in doctors office waiting rooms. We arrive the requested 15 minutes early for our appointment, sign in, hand over our insurance card, drivers license and credit card (swoon a bit over the hit the credit card is about to take) and then we are gifted with a stack of at least 3 inches but never more than 5 inches thick of paperwork to fill out. Questionares, data collects, permission slips, HIPPA notifications and those bubble forms we thought we left in high school comprise this stack. Then we are handed a clipboard. A clipboard!!! We proceed to sit in the waiting room for at least another 30 minutes trying to scribble as fast as we can on a toppling stack of paper while trying to recall when our now 13 year old learned to sit unaided and answering rapid fire questions and scripts from our child (Mom, where is my DS? Mom, did you know that the rat didn't cause the bubonic plague? It was the flea! Mom, I need an outlet, I only have 68% charge! Mom, how long is this appointment? Boom Shaka-Laka! Brrrring the Sting! Creepers gonna creep!). Can I just get a chair and a horizontal surface to set down my 5" stack of forms, my binder tote, my already exhausted arms and my embarrassingly large insulated cup of coffee (or Diet Coke, whatever)? 
  2. Free wifi in the same doctors offices and waiting rooms without having to call tech support for a temporary password. Bescause, honestly, if I have to go back up to that desk one more time to request such a thing then it's just not happening and meanwhile, I could have some of this information you've requested if I could just email The Hubs or do a quick google search for our last doctor who's number did not make it through the last synch on my phone. Speaking of which...
  3. Can I get a phone that does not require monthly updates which will invariably wipe out half my contacts and/or change the appearance of my calendar app? Don't change the calendar app ever!!! Just don't do it, do you hear me? It creates a vortex of chaos that just cannot be conveyed without many explicatives and generous hand gestures. And can you make that phone water and crash proof, please? Thankyouverymuch.
  4. Please reform the student loan program and don't forget about those of us who graduated a decade ago. I'm hearing some promising ideas coming out of Washington for student loan reform. (What?? I know!) Nothing I've heard will help those of us who have been diligently paying now for 15 years and still have so far to go... I fully intended on going back to work after kids, I was going to use both my degrees to make a difference, pay off those loans and start a 401(k) but life happened. The chances of me ever going back to work are very slim, I am prepared to take care of my boys every day for the rest of my life. I'm giving up my chance to work in hopes that the therapies and education they are receiving now will allow them to someday find a fulfilling job and to make their own contribution to society.  But seriously, that extra $300 a month can be a killer when insurance fights back...
  5. Will someone please close the loophole that allows self insured companies to bypass state (and some federal) mandates for treatment of special needs children? Its such an asshole thing for big companies to do and it's really screwing with families who need those rehabilitative services. 
  6. Governors and Congressmen need to understand that the Autism population is a LARGE one and it is getting larger. The numbers of Autistic adults who are homeless, in prison, on welfare and in state run facilities is staggering. The need for services is not when they are transitioning into adulthood at 21, the need for services is at time of diagnosis and during school. If you support them now through education and therapeutic services these kids will grow up and have jobs, open businesses and pay taxes. You already know the alternative, you are seeing it now in the prisons, the soup kitchens and hanging out at the library because its the only warm and safe place to go. 
  7. Figure out a way to meet the needs of high functioning special needs children who cannot function in the current idea of a "typical" classroom. I think the reason inclusion isn't working for some high functioning kids is because the classes are too big and the teachers are too few. No one (I'm looking at the elected officials here) wants to put money into education and teachers are absolutely NOT paid what they are worth. If we wait around for those teachers who find a "calling to teach" then we will have fewer teachers every year. A"calling" doesn't pay the bills and I know there are excellent teachers out there who can't afford to be a teacher when another job will pay better even if it's not their "calling".  
I tried to keep it light hearted. I love my "Autism Warrior" tee shirt and my insulated cups, I really do. I still love those articles that share with the world a glimpse into the isolation and struggle that Autism families face. The secrets they share are absolutely true and so are these. Even something as silly as a table to fill out paperwork can make a day easier and some days easier is the best we can hope for because you know a nap just isn't going to happen. 

Wednesday, June 18, 2014

My Sons Have Bruises All Over Their Legs and I Couldn't Be Happier!

Yep. That sounds odd but it's true!!! If you are a long time reader you are aware that we are dealing with Autism + Anxiety + Aggression + ADHD (wow, thats a lot of As, a perfect report card!). All those As for us mean:

Autism- Very limited interests, loves screens, hates being outside, amazing immune systems and an incredible sense of balance.

Aggression- We shy away from taking our oldest places where he may be anxious and become aggressive, in this way we shelter him which is not fair to him and to us but time, patience and my own peace becomes a limiting factor (and a person goal for myself to get over it).

ADHD- Attention limits things we can do, trying to learn new things sometimes isn't engaging enough to sustain attention long enough to learn.

Anxiety- Fear of the unknown, not wanting to try something because we don't know what could happen. What will the outcome be? Will I like it? Can I cope if I do not?

Add all these things together and you get two boys who have an innate athleticism and the ability to do hard things again and again without injury, that is IF you can get them outside long enough to try!

Enter I Can Shine Bike camp! Being able to ride a bike is freedom, its confidence, it's integrated and it's FUN! My boys have never been able to manage the skill.  Something about steering, peddling, watching where they are going, balancing and braking was just too much. I wasn't much help to them either because I just couldn't explain it, just balance and ride. To me it seems so simple but I couldn't help them so I researched it (as usual).

What I found was very interesting... When learning to ride a bike your entire brain is engaged in the task. Imagine how difficult that would be if your neural pathways were having difficulties already. As you learn the task it becomes more second nature and it engages the brain less and less. Once learned and practiced you can pick up a bike any time and pretty much ride it forever, no matter how much time has passed.

I Can Shine is an adaptive learning program, small group instruction (6-7 riders at a time, each with 2 volunteer spotters/runners), using adapted equipment which gradually teaches balance and gives kids an instant sense of accomplishment. They are riding in the first 5 minutes of camp!!!

I have taken tons of pictures and videos and I want to do a follow-up picture post after our camp week so keep your eyes out for that but for now... My sons have bruises on their legs and I couldn't be happier!!! They are learning to ride a bike, they has wobbled, bobbled, been hit by the pedal, and the results are badges of honor that says they have gone outside his box, are trying something new and are SUCCEEDING in the most amazing way!!!

I am so proud of them and forever happy to be their biggest fan.