Thursday, March 27, 2014

THE Numbers

You know what I'm talking about, it's what everyone in my world is talking about. Today the CDC released the new Autism rate numbers at 1:00pm. Everyone waited next to the computer to put it on their site and get the numbers out as fast as possible. I didn't, I was at lunch with a friend.

The new official rate of Autism is 1:68 (boys 1:42; girls 1:189). How about a pretty graphic?

You might have caught my tone here, not too much excitement. I'm not jumping up and down yelling, had the numbers gone up or down my reaction would be the same. The reason for that is because I'm frustrated. Tonight Autism will be all over the news media, articles will be printed, blogs will be written, news anchors will say "wow" and I will sit here and say AND.........

When my oldest son was born (2001) the rate was 1:250

The day he was diagnosed (2004) and the day my younger son was born it was 1:166

The day my younger son was diagnosed (2007) it was 1:150

When I started this blog (2011) it was 1:88

In the past I would anticipate the numbers, I would sit next to the computer and await the report. I would think that they meant something. Once we broke 100, once the rate got to 1:88 I thought to myself SOMEONE will notice! SOMEONE will do something!! Doctors, researchers, the CDC, the FDA, the EPA, Congress, someone would recognize that this is an issue. Wait? An issue? This is more than an issue. 

No doubt I am biased, I'm extremely biased. I can't separate Autism from my life any more than I can separate female from my gender.  I would love to say that life is so much easier since our first diagnosis but guess what? It's not

I still can't find specialists in my town (population 66,000).

Insurance still doesn't cover even half of the services my boys need. 

There is still no program in our school system that can adequately educate the high functioning special needs diploma seeking population.

The state waivers still have waiting lists thousands long. Not that it really matters though because once you have the waiver in my state you can't find any providers who accept the waiver as payment. 

We still get stared at in public and I still get unsolicited advice from people who think they know best. 

Families are struggling. Spouses are divorcing. Parents live in fear of the future. Kids are lost. 

To be perfectly honest, I don't care if the numbers are increasing because of better diagnostics or if its because there is too much of something in the air or our food or if it's because there were more cloudy days than sunny days 10 years ago... I don't care what the "experts" say that benefits their pet projects what I want is for them to freaking talk to one another and figure it out and get these numbers under control. 

I hope that someday, someone will soon realize that there is a population of kids and adults that have Autism NOW and tomorrow there will be more. This is a population large enough to make a difference and impact the future and what they need NOW is: 
  • education 
  • medical support 
  • psychological support 
  • therapeutic support
  • a future 
These kids are AMAZING. They are talented, they are smart, they are beautiful and they are a large part of the human population (and growing). To neglect their needs now is to ignore the future. If we as a country fail to educate them now, we as a country will have to support them later. Autism doesn't just go away at the age of 21, dedicated parents don't live forever and as much as I want and need to save for my boys future, I'm too busy paying for the therapies they need in the hope that one day they will be able to partially support themselves even if they can't live by themselves. 

So, as much as I want to think that these numbers will shock everyone and something will happen from it I know that tomorrow is a new news cycle day and something else will be the headline. 1:250 wasn't high enough... 1:166 wasn't high enough... 1:88 wasn't high enough... will 1:68 be? 

Tuesday, March 25, 2014

Why I Hate Wednesday

You may have noticed, I kinda post about (ok, whine about) the fact that I hate Wednesday a lot. Like seriously, dread, loathe, hate Wednesday. I probably post this at least once every Wednesday on the Facebook page, and my personal page, and to whomever I speak to that day, and... well, you get the picture. I dislike Wednesday with a burning passion, but have I ever explained why?

I hate Wednesday because to me it is a broken promise, it was supposed to be the BEST day, it is supposed to be the day I look forward to only slightly less than Friday. It's supposed to be the day of the week I get to spend an entire half-day with my 12 year old, but it's not.

It all started when he was in fifth grade and he was really struggling, one blow up lead to another which lead to another which landed us at the NeuroBehavioral Outpatient Unit (NBU) at Kennedy Krieger. This program is no joke, it can be as intense as all day every day for a month or less intense with two 2-hour appointments per week. We did the 2x2 option, more accurately it was chosen for us. One of those days every week was Wednesday. I would take Cameron out of school early to drive an hour, go and do our work in the clinic for 2 hours then drive an hour home. It was physically and emotionally exhausting for both of us. The other day of the week floated for whenever we could fit it in but the constant was Wednesday, we were in clinic every Wednesday for 8 months.

Fast forward, he "graduates" Elementary School and is headed to Middle School! We fought for and got a non-public placement at a Kennedy Krieger School and the consistency is awesome. Every Wednesday this school has an early dismissal which means that we can attend our NBU appointments without having to take time away from school. The appointments are still exhausting but at least he isn't missing instruction time.

Then he "graduates" from NBU!!! Our Wednesdays are FREE!!!!!!  I decide that we will start having "US" time, we will work on some of those real life skills. We will go to the mall and shop for silly tee shirts, we will make a grocery list and hit the store, we will go get ice cream or visit the library or just go home and watch TV together. But that's not what happened.

Research shows that executive functioning, behavior and attention can be helped with NeuroFeedback. The only appointment available? Wednesday.

Neurobehavioral Outpatient Unit has two years of follow-up treatments in the home to help "tweak" the behavior system. The only day the doctor is in our area? Wednesday.

My day to day schedule is a precarious balance between bus pick up and drop off and taking my younger son to and from school. The morning works in my favor but the afternoon is so tight that if I am delayed for any reason or if the bus is early (rare) then there is no one at home to get Cameron off the bus. Wednesdays again seem like a beacon of calm, there is no rushing to beat the bus because he doesn't take the bus on Wednesdays! Except it's not because instead we are rushing back to our hometown because after the early pick-up and NeuroFeedback appointment, we run the risk of being late to pick up my 9 year old from school on time.

As soon as I get home, with both boys, and take a breath... The person from the Neurobehavioral Outpatient Unit arrives for an hour+ appointment where I feel like a complete failure for forgetting to go over the rules before we did our assessment yesterday or I failed to do a BRT session before bed last night.

The problem with Wednesdays is that all of these things are important, so is spending time with my son and so is doing the dishes and laundry. On the days where it is non-stop from bus pick up to bedtime there is no time to prioritize which part of the day holds the most importance. It all feels important.

So I hate Wednesdays. Really, truly, loathe Wednesdays. I want to cancel our NeuroFeedback appointments but he is doing excellent and making progress and I don't want to take that away from him until he has completed at least the initial appointments. I want to tell NBU to go away but we lost 8 months of Wednesdays (plus another day) and to not complete the full program would waste all of the hard work he completed in that office.

This won't go on forever, it can't. The initial Neurofeedback appointments stop around 20 sessions and I am hopeful that we will get the NBU plan in place comfortably and we may be able to drop down to every other week visits. Then, hopefully, you will find Cam and I looking for silly tee shirts at the mall and picking up ingredients for brownies at the grocery store and Wednesday will be the BEST day of the week... like it should be!

Wednesday, March 19, 2014

Guest Blogger: Tina Shares a Little Bit of Sunshine in a Sometimes Dark World

Billie and Tyler at the Sadie Hawkins Dance 2014
by Tina (a.k.a Sprout), Super Proud Mom of Tyler

If you read Maggie’s last blog post, then you no doubt saw the links to horrific stories that have recently been in the news. These stories are tragic, sickening and extremely infuriating. They make me think and day dream evil thoughts towards these people cowards/animals. But I’m here to share a glimmer of hope in humanity. It’s a small gesture to some but in the world of special needs families, it’s HUGE!

My son will soon be 17 and was born with Spina Bifida (Learn more about SB). He also exhibits many Autistic symptoms. Tyler is mentally behind by many years academically. He’s in the 11th grade but depending on the subject, he is at a 2nd-3rd grade level, and on the lower end. But he has great communication skills when he chooses to display them and a very bubbly personality, when he chooses to show it.

We’ve lived in our current school district, Liberty, in Missouri, for almost 8 years now and despite a few bumps that are pretty typical, we’ve loved every bit of it. The schools have been fantastic with Tyler and with communicating and working with us. We really couldn’t ask for more. The students appear to be equally special. Now, I’m not delusional enough to think it’s always perfect and that there aren’t those students that don’t accept the special needs students but overall, from what I’ve seen, they are very accepting and interact very well with them. They even volunteer their time for after school activities, special needs programs, inside the classroom and for their end of the year Job Olympics, where the students show how well they can do basic tasks, such as hanging and folding clothes, pet care, basic money handling, etc. Any time I’ve ever gone to Tyler’s school and am in the halls with him, there’s never a shortage of students saying hello to him and giving him high-fives.

Like I previously said, Tyler loves to chat at times and between classes is his favorite time, as well as during lunch time. This is apparently where he met Billie. Tyler doesn’t come home and share everything about his day, in fact, if it wasn’t for his teacher, I wouldn’t know half of what took place in school. The week of Valentine’s Day, Tyler stepped off the bus carrying a big gift bag that was filled with a stuffed bear and a framed picture of Tyler with a girl and another boy. Billie was the girl. I couldn’t get any information out of Tyler but I remember he received something last year from a buddy so I didn’t think much of it. 

Then a little over a week ago, I received an email from Tyler’s teacher notifying me that he had been asked to their Sadie Hawkin’s dance and she thought I should know. When Tyler came home, he was carrying a construction paper invitation folded like a book and it was from Billie. 

(Note from Lunatic Autism Mom: awwwww..... How cute is that???)

Tyler was very excited and even willing to stay up way past his bedtime, which is 9 on school nights and anytime on the weekends, although he’s a creature of habit so he rarely stays up past 9 pm. The dance was from 8-11 and he was anxious to stay up. Billie even went to the nurse’s office and requested that her phone number be given to me so we could communicate about the dance. I didn’t find out until the afternoon of the dance that the casual dress code had been changed to semi-formal. I was pretty bummed because I had no time go out and find semi-formal clothes. But I knew we would make it work somehow.

The time came to leave. We arrived at 7:50 and went straight inside where we were supposed to meet Billie so I could take some pictures.  But the time crept by and no Billie. We watched a few other students come in all dressed up and even saw a couple of Tyler’s classmates from his SPED class. Billie sent me a text that she would be arriving around 8:10. I’m sure any mother of a SPED child can easily relate to the anxiety and crazy thoughts that started coursing through my mind. 
Is this a cruel joke after all?
Are the students mingling nearby really waiting on a show that will no doubt mortify Tyler and cause me to go to prison for mass murder? 
I had no indication or warning signs that Billie was in any way playing a cruel joke and I knew deep down that Tyler’s teacher would warn me if she suspected anything, but still. The thoughts came and became stronger as time continued to pass and still no Billie. We exchanged a few more texts with her saying she was on her way and FINALLY, at 8:32 (yes I time stamped her arrival), Billie walked through the doors and Tyler’s face lit up as he crushed her in a bear hug and she took it like a champ and gave it right back.

Tyler has attended other dances before but this was the first one where he was actually meeting someone so I was extra nervous. Hanging out with someone during a 30 minute lunch is far different than spending almost 3 hours with them. So I was relieved to see that Billie didn’t look like she wanted to pull her hair out or couldn’t wait to get away from Tyler. Tyler is a wonderful boy but he has quirks and habits (ticks) that can get annoying to someone who’s not used to being around them for very long. The next day, Billie even sent me a text requesting that I send the pictures I took the night before. She’s a very sweet girl with a big heart and I feel she’s going to do great things in this world…even if it’s by touching the heart of someone in a very selfless way. Tyler said he had a wonderful time and even danced; slow and fast!

So as you can see, we can’t give up on humanity, not just yet. There’s still a huge amount of ugly in this world and as much as I want to, we can’t ignore it. We have to confront it and smother it. And we need to bring more focus on the good, like the story I just shared. For those that are outside of the special needs world, it may be hard for them to understand what the big deal is about stories like this, but for those of us inside, it’s like a pot of gold at the end of a rainbow after a terrible storm. It’s the little things that truly matter.

Thank you for letting me share my story and my first blog post! 

(Thank YOU Tina!! For being my first Guest Blogger and for sharing your story, I LOVED it and I think everyone else will too! ~Lunatic Autism Mom)

Friday, March 14, 2014

Aggression Regression

This morning my son punched me in the face.

Welcome to the dark side of Autism. This is the part where I tell you that not all special needs children grow into gentle giants, this is where I burst your bubble and tell you that special needs children have hormones, emotional outbursts, and feelings they cannot control. This is where I tell you that kids with Autism are human.

I feel the need to say this because of things I've read lately about Autistic kids being held at knifepoint and forced to do things they don't want to do (link to an article that makes me sick) and Autistic kids being filmed and laughed at (link to an article about a teacher and principal who should be fired) and Autistic kids who grew into adults while forced into slavery (link that reminds us to learn from our mistakes). At what point did special needs persons become less than human? How is it possible that there are people out there who can even think this is okay? People DEFENDED the teacher and principal in comments in that article. The owner of the workhouse in Iowa said he was HELPING the men who were slaves for decades. The oldest girl who held the Autistic boy at knifepoint was released pending charges, RELEASED?? How is that even possible?

(Sorry that was off topic but I am super pissed at these stories, all of which have been reported in the last 2 weeks! Unacceptable! Back on topic...)

Indeed special needs people of all ages are HUMAN and as such they grow and mature just like everyone else. The difference is that they may not have the coping strategies to adequately understand their feelings and emotions. I've not hidden the fact that Autism can come with some serious aggression issues, working through them is the hardest thing I've ever been through with my child. He's 12 now and in the throws of puberty and that is not an easy thing for anyone to handle but even more so for a special needs child because they just don't understand what is going on, why they feel the way they do and how to express their concerns and emotions. Cameron cannot tell me he is frustrated. How frustrating would it be if you could not identify and express frustration??!! I got frustrated just yesterday when a pile of papers fell over and I had to re-sort it all. I wanted to throw the whole pile in the trash but instead I just took a deep breath and picked it up. I didn't even take the time to identify, process and plan it, I just did it. Cameron cannot.

So what do you do when you have a child who goes from happily eating breakfast to fighting for his life in a blind rage?

  • You keep him safe. You keep yourself safe.
  • You identify the problem (if it's identifiable)
  • You let him calm down completely.
  • THEN you try and work through it. 
Trying to teach any strategy during a blind rage just is not going to happen. He can't hear me, he can't process what I'm saying, he is on auto pilot and he is MAD. He just may not know why. 

I'll say it again because it bears repeating, this is the hardest part of our journey with Autism so far and it has the potential to be far far reaching. Cameron would fight a police officer if he were in a rage and that terrifies me more than I can even express. Cameron fights against me when he is in a rage and it hurts when he lands a good hit but what hurts far far more is when he "comes back" and he is sobbing because he realized that he did it.  Today he was sobbing on my lap for 30 minutes and I cried right along with him for most of it. Its a hard thing to comprehend that someone I love so very much hit me before 6am and worse yet he didn't even know why. 

But I'm a freaking Autism mom, I don't have time to get down about it. I had my pity party on the drive home from taking him to school and now thats done, now I've got stuff to get done. This isn't the first instance, our 5th grade year was filled with extreme mood swings and abrupt changes in temper. We have Psychiatrists, Psychologists, a Special Needs School that is well versed in these issues, and friends going through the same thing. Sitting around being sad that my child had a really rough morning is NOT going to help him and it is not going to help me. 

Figuring out how to keep it from happening again is priority number one, he doesn't like to be that kid and it's my job to continue implementing the plan put in place by the NeuroBehavioral Outpatient Unit at Kennedy Krieger and to work on being more proactive with strategies to help him cope. It will be difficult but he will need hard and fast rules of behavior and will need a thinking roadmap to help him identify and filter through his own emotions so that he can come through the emotion still in tact and not in a blind rage. This is not going to be easy, those things that we do naturally to calm ourselves will need to be expressly taught. 

Secondly, I cannot assume that it is never going to happen again. We have a lot of years left of puberty and figuring out the way the world works... he is going to reach his limit again. I have to be re-trained in safe restraint. I was trained many years ago and the training held until last year when Cameron grew to more than 5 feet and 100 pounds. At that point he was just too big to safely restrain alone. A call to my friends in the Neurobehavioral Unit led me to a class offered by Kennedy Krieger that is somewhat of a self defense class for parents. A typical self defense class teaches you how to fight back, this class teaches you how to block and avoid but not injure the child who is attacking you. That is what I need. 

Today my son punched me in the face. I will figure out why, I will help him cope and I will aide him through this very human journey of growing into adulthood. I am not mad at him, I do not blame him, I am not scared of him, I want to help him and I will. 

Thursday, March 13, 2014

Its Never Good When a Suggestion Starts With....

You're a stay-at-home mom, right?

You want to go there? Okay, lets go there.

This was said to me by a Psychiatrist in Baltimore. Baltimore is an hour away from my house. She restricts her office hours to 9am-3pm (school hours naturally) therefore for us to see her and get medication prescriptions my 12 year old needs I have to:

  • Drive an hour towards Washington DC to pick up my son from school. 
  • Drive 1.5 hours around the Washington DC beltway to the Baltimore beltway and into the heart of Baltimore.
  • Have a 20 minute appointment with this doctor. 
  • Drive an hour home (because obviously I am going to schedule this appointment early or late in the day).
This is an example for ONE specialist, we have 10. You want to know how I spend my time? I spend my time in the car going to these appointments, then I spend my time faxing, filing and submitting insurance claims for this appointment, then I spend my time on the phone with your scheduling line because you want to move our appointment AGAIN, then I spend time on the phone with our insurance company because you are "out of network" and why wasn't this appointment applied to the deductible and THEN I get to spend time on the phone with Medicaid, your billing people and our insurance company because between the three of you there should be $0 balance. 

So go ahead and tell me your solution that will all be solved because I am a stay-at-home mom.... go on... 

Our psychiatrist wants me to set goals for my 12 year old on socialization, playing nicely with peers and his brother and working within the community. These are ALL good things and I totally agree. To accomplish this she suggests that we use the Maryland Autism Waiver's hours for Intensive Individual Support Services (IISS) and Therapeutic Integration (TI-social skills classes, art therapy, music therapy) while utilizing the resource of Family Training to set goals. The good news is that we have the Maryland Autism Waiver, we sat on the wait list for 8 years and our name finally came up. The bad news is that the waiver is broken and these magical hours only work if you can find a PROVIDER for IISS, TI and Respite. 

Usually you sign up with a group that provides these services, they manage the paperwork and the documentation, keep track of your allowable hours and submit to the Waiver for you. Each month you HAVE to use either IISS, Respite or TI or you risk losing the waiver. So what happens when the group you sign up with have no IISS and Respite workers available and there is no TI available in your area? Then you fire the group that you have been using and you find another one... who has the exact same problem, NO IISS and Respite providers and there are still no TI opportunities in the area. 

So as I was explaining to this doctor, we have the waiver but I cannot find any providers and I am worried that we will lose the waiver. You see the waiver comes with Medicaid and Medicaid pays for the part of this appointment (and all other appointments) that our insurance doesn't and it pays for prescription co-pays. But using Medicaid doesn't "count" towards using the Waiver, only IISS, TI and Respite "counts" so we really need to keep the waiver! 

Her solution:

You're a stay-at-home mom, right? You can coordinate the waiver yourself and cut out the middle man. 

I'm not saying this is a bad idea, it's just an idea based on the false assumption that I HAVE THE TIME to manage the paperwork, coordination, hiring, resourcing, tasking and billing involved. I'm not even saying that it's completely out of the question because I may be out of options since the new group I've signed on with failed to place someone in my house for even an hour of services last month.  So, no, it's not a bad suggestion but PLEASE fortheloveofgod don't assume that I have the time because I'm a stay-at-home mom!!!!!

Given enough time, I could manage the waiver myself.
Given enough time and money, I wouldn't need the waiver.
If I had more time, I would go to the top and try and fix the waiver.
For the people who neither have the time or the money, like us.

(**There will be another post about the Maryland Autism Waiver soon, less rant-y, more informative. Until then, see links below.**)

Maryland Autism Waiver Fact Sheet
MD Department of Education (who implements the waiver)
Waiver Guide for Families