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 11^th 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)

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. 

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.**)

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

I've Reached A Parenting Milestone!!

Picture of the cookies I just baked.  (Photo credit: Me)

Yesterday I let my kids eat cookie dough. 

Yes, you read that right. I have finally gotten to the point where I determined that their 12 & 9 year old bodies can handle raw dough. Yes, I feel ridiculous at how long it has taken me to get to this point.

Now, in no way shape or form do I condone the use of cookie dough either for medicinal or recreational use. Consuming cookie dough is a slippery slope into much harder doughs like cake, muffin and brownie batter which I absolutely do not condone. (But freaking YUM, amIright??)


Here's how it all went down. I found what I now call the "Magical Cookie Dough". It is not magical because it doesn't contain eggs (it does), it's magical because you make the batter, form it into balls, stick it in the fridge, then bake them cold after smooshing them a bit. This hits ALL my "perfect Mommy" buttons because:

1. I am making them from scratch so I can control the ingredients, use organic when I have it and if I want to and keep out all the stuff that I'm constantly trying (and often failing) to control. 

2. I get to have that "perfect Mommy" moment when the kids get home and I get to say, "who wants fresh cookies still warm from the oven?" Of course I'm singing it and my voice is perfect because hey, thats how I roll.  

So in my mind we're sitting around this perfectly clean and tidy kitchen and enjoying our afternoon snack, and it totally would have been clean and tidy if I had not just mixed cookies hours before and then life got in the way but whatever... we're sitting around the table and I take my first bite of the Magical Cookie which has allowed me to live out this perfect Mommy fantasy and I say, "ugh! The dough was better!"

And it was, it has cream cheese, butter (organic of course), more brown sugar than white sugar, extra vanilla and of course the aforementioned eggs, the dough was delicious. Then I hear...

(*gasp*) "You ate the dough?? I want the dough!" Thank you, Adam for catching that and everything else I say that I shouldn't. Eating dough in our house was strictly verboten and in the past I had to sneak my love for cookie dough into the pantry, the laundry room or even the garage.

It was then that I realized that my boys are NINE and TWELVE! By the time I was 12 I would make brownie batter with absolutely no intention of baking it at all, I was mixing and measuring only so that I could eat the batter. Of course after a few spoonfuls my stomach would start hurting and I would bake off the rest because it really is a sin to let good dough go to waste. So it was completely ridiculous that I was keeping the boys from the great wonderfulness that is cookie dough.

I had only baked one cookie sheet of the dough balls from the fridge so there were still a lot left over, I got out three cookie balls and gave each of us one. I did the prudent parent thing of telling them that the ingredients in the dough were raw and it is not a good idea to eat some raw foods but just this once they could try the dough.

We all agreed that the dough is indeed better than the cookies and that I would continue to bake a few more sheets because you can't take raw cookie dough to school in your lunchbox. With the added bonus that I got to have another perfect Mommy moment when I included two homemade chocolate chip cookies in each box this morning.

So thats the parenting milestone I've reached this week. I feel it is pretty monumental. Maybe not as monumental as when I let The Hubs take the boys (BY HIMSELF) to visit my in-laws on their uncleared retirement property in New York that has no running water, no sewer and no electricity. I was pretty much convinced that the boys would come home broken in some way shape or form, but they didn't.

I patted myself on the back for not freaking the hell out that weekend and today because sometimes being the Perfect Mommy isn't about controlling everything that goes into their mouth, sometimes it's about letting them eat the dough and then hiding the rest in the back of the fridge in an empty container that used to contain non-fat, sugar free, unflavored yogurt because there's no way I am sharing my stash!


PS: The Magical Cookie Dough recipe is actually Softbatch Cream Cheese Chocolate Chip Cookies from blog Averie Cooks, which I found through Pinterest. Recipe HERE.

My Not Very Popular Opinion

This is my thoughts on full inclusion programs.

This has been something on my mind for a while and I hesitated to write about it because it goes against the current "norm" of the public school system model.  This became of great interest to me last year when I was looking for a middle school program for my 11 (now 12) year old. I wanted to look at each school, how it organized, how they handled inclusion and what types of supports were available in the middle grades.

I set out to learn all I could about special education in the middle school setting, charter programs, magnet schools, non-public placements and private schools (expensive!!!). I looked in my county, other counties around ours and even other states. I found a lot of information including accommodations, modifications and ideas for transitioning into Middle School but also I found instances of continued segregation (Washington Post) and how charter schools may be contributing both to continued segregation and reducing funds available to special needs students (Huffington Post & Aljazeera).

So then I took the information I collected and applied it to MY situation and MY boys and what are OUR options? How does all this good, bad and ugly apply to Autism, ADHD, Aspergers?

For example this article tells us that charter programs cannot turn away a special needs child but that they often aren't equipped to handle them therefore the majority of the time special needs students remain in the public school setting. And it was then that doors started closing and I started to get mad.

Charter Schools do not receive all of their operating costs from the school system budget but they receive a large amount. Magnet Schools (gifted and talented programs) housed within the school system do receive all the operating costs from the school system budget. BOTH of these programs are closed to kids like mine, one isn't equipped to handle their needs and for the other, my kids don't qualify. Which means mine are excluded.

So I went looking for the specialized program that will meet their needs and found NONE.

In a school system that has two charter schools and a magnet program, they have NO program to meet the needs of a high functioning special needs population. In many cases high functioning special needs students cannot always be included in the typical public class setting, large class sizes, constant changes in routines, massive amounts of distractions and stimuli make it almost impossible for them to learn. These kids (MY kids) cannot learn in a standard class setting but many are at grade level and diploma bound.  For them it is a constant challenge just to exist within a typical class setting, much less access the education they are promised.

Can the kids in the charter schools and magnet programs learn in a standard class setting?

Yes.

School districts are allocating funds to teach kids in a specialized setting because they won the charter lottery or because they are super smart but there are no specialized programs for my child who cannot learn in a regular classroom setting. Why does "least restrictive environment" not apply to them but it is the ruling fist of law that special needs parents need abide?

So there, I've spoken out against Charter Schools and Magnet Programs but here's the kicker, I'm NOT OPPOSED to those programs. I have friends who have kids in the charter schools and in the magnet program and I am very happy that their kids have that opportunity.  I am not opposed to the parent who wants the very best education for their child, I want the same for mine as well. I just cannot understand how a school system can create specialized programs for kids who are fully capable of functioning within a typical class setting and yet completely and wholly dismiss the needs of the kids who cannot.

*********************************************************************************
As an aside I would like to speak about segregation which is something that I just cannot abide. I am saddened by the research I found that it is worse now than 40 years ago. This both hurts and infuriates me. I read a quote where someone suggested that all schools within the same county (city or district) are fundamentally the same which begs the question, if they are all the same, why not let families chose the school they want? I think then you will find very quickly that there are schools who have better teachers, better resources, more money. When 90% of the school age population asks to attend one school, you have to wonder why....

Lunatic Autism Mom Reviews The Numbers League Game

It's no secret that my 9 year old is struggling with math and we are struggling right along there with him.  This has resulted in full Neuropsychological testing and subsequent evaluation for Dyscalculia in which we were found "borderline".  Basically there is a misunderstanding with the building blocks of math which makes even simple math concepts incredibly difficult.

Currently we are working with the school to look for interventions, at home we do extra work with current curriculum and do additional practice on the basics and facts.  We are constantly looking for fun ways to bring math into real life opportunities as much as possible. We practice money by keeping a check register of gifts and the occasional pay day for chores (I could do a whole post just on chores and payday!), we practice fractions with cooking and we practice measurements with cooking as well. What can I say? I like to bake!!

Another way to try and bring in more math practice is games. For Adam, those simple math games just couldn't break through the ADHD and keep his interest so we went in search of a new game and found Numbers League by Bent Castle Workshops.

LINK TO THE NUMBERS LEAGUE WEBSITE

I love boardgames and consider myself somewhat of a connoisseur and I think this game is really fun! More importantly it holds Adam's attention and he gets to practice his math skills. 

How to play: There are at least two levels of play with this game and so far we have only played the basic level. You lay out the Villain cards in the middle of the table and then you build Heroes to capture the Villains. Each piece of the Hero (legs, body and head) has a number value and added together equals the strength of the Hero. Match the Hero strength to the number on the Villain and you have captured the Villain! If you don't have enough strength, never fear, you can also use a weapon or tool to boost your strength AND band together Heroes to capture the Villain together.  Once all the Villains are captured the game ends and the person with the highest score wins (by this point we are pretty tired of adding numbers so sometimes we determine the winner to be the person who captures the most villains).  

This is a picture of my game pieces. I had *8* Heroes so we added post-it tabs to help us keep track of our Hero totals. When adding up 3 or 4 Heroes to capture a 22 point Villain this really helps! Above my Heroes are the Villains I had captured and the deck to the left was the draw deck.  Another thing I think is fun about this game is the names of the Heroes, each card contains a piece of the name and when you build your Hero you will determine his or her full name.  Here you see (L-R) Wise Winged Wonder, Ancient Yellow Quarrel and Frigid Twisty Paladin.  

The basic game uses addition, the next level has some subtraction and even multiplication cards as well. Expansion packs are available so you can keep vanquishing Villains with your Numbers League!! 

We've played this game a few times, in that time has he learned a ton of math skills? Not really BUT he is practicing addition for an hour or more! I'd like to see a worksheet make that happen.  Adam loves to build the heroes and even if we don't have time for a full game or if he can't find an opponent he still loves to build the Hero and determine his/her strength. Its a super fun game by itself and the fact that you practice math is just a bonus.  I give it the Lunatic Autism Mom seal of approval!!  

**Edited to add... I purchased this game after finding it online quite by accident. I did not receive it from Bent Castle and I am not being paid to review it. That would be an AWESOME career though!!**

UPDATE! Anxiety, Meds, the Dentist and My Son is Awesome!!

A timeline:

3:10 Pick up from school, we drive home and he is already worried about his dentist appointment. He picks fights with me about things unrelated but I can see through to his anxiety.

3:30 We've arrived home and had a snack (muffin) and a drink (juice) and its time to take the medication. I explained that it will make the appointment easier and he won't be as afraid of the dentist this time.

4:00 We arrive for our 4:10 appointment. He sits in the only corner with only one chair so that no one else can sit next to him (this is normal) and we wait. He is acting goofy and a little hyper and I'm worried.

4:30 I'm super annoyed because they know sitting in the waiting room can increase his anxiety but at this point he has moved past the hyper and is staring at the TV (Phineas & Ferb, naturally) and tapping a Skylander icon on the iPad that makes a noise.

4:35 We go back and he gets a little anxious but he is a bit lethargic as well so he sits in the dentist chair without me asking!! The dentist comes in, this is our normal dentist and he is AMAZING with my 9 year old, they make a deal... Show & Tell before anything which is to show us what he is going to use and tell us what he is going to do with it and why.

In this appointment they brushed his teeth, counted and looked for any issues and polished his teeth with the toothbrush and the tooth polish (not the electric spin brush thing). We did not do a fluoride treatment, when the dentist said it Adam freaked so we skipped it. This is probably because a past dentist got really annoyed with us and Adam's refusal to let them put it on his teeth. He will never forget that.

5:05 We were outta there and on our way to get drive though for dinner, Adam's choice for being SUPER AWESOME!! (And necessary because my garbage disposal died last night and at last check The Hubs had the kitchen torn apart)

We're home now, dinner has been eaten and Adam is on his earned computer time to round out the evening. He is a little spacey still and will probably (hopefully!) sleep really well tonight.

Today is a good day.