Eternal Optimism Put to the Test

One of the good and also one of the most annoying things about me is that I seem to have an endless supply of optimism. That isn't to say that I don't get "down", everyone has their breaking point but for the most part I really do believe that what is best is what will be and when one door closes, another door opens. Yes, sometimes I even annoy myself.

Then there are days like today where my optimism is put to the test, where I am struggling to remain positive and fighting to keep hopeful. Today I have faced:

• An IISS worker who has stopped answering calls and texts from myself and the company who hired her. This leaves me scrambling to get "hours" logged for the month which is imperative to remain on the Maryland Autism Waiver (and eventhough the Waiver program can be a PITA, it is still helpful).

• A pediatric dentist who specializes in helping Special Needs kids who found a cavity in my son's tooth back in October and because he will require sedation (very scared of dentists) they have been unable to schedule him for the procedure. It's MARCH! He's in pain. They called this afternoon to tell me (again) that they have no time in the schedule and they are referring me to an oral surgeon, oh and by the way, our medical insurance is denying pre-certification for the General Anesthesia required for the surgery. Dental Insurance will only cover about half the cost of the dental procedure and Medical Insurance won't pick up any of the hospital fees. Looks like I get to prepare for another Insurance battle. 

• Fed up with the dentist who has put off my child's care since October, I've scheduled him with a new dentist for Friday. We will be starting over. With a child who is terrified of Dentists. What could possibly go wrong? Luckily this dentist is a Preferred Provider with our Dental Insurance so they *may* cover a bit more of the costs of the dental procedure but I think I will still have to fight medical insurance to cover the anesthesia. 

• Our Middle School options seem to be dwindling by the second. It appears as though the school is choosing the ONE option I just won't (can't) approve. I'm still visiting Private Placement schools but it's looking very unlikely that we will get any county support for the fees. I almost don't even feel like I can fight it because I know there are deep budget cuts coming and I cannot see how they could even consider my plea.

• Moving to a county with better school programs has always been an option but it is looking more and more like we would almost have to bankrupt ourselves to do that and meanwhile, I really really love the town we live in. It's just small enough and just big enough and I would be very sad to move out of this town and closer to the chaos of the Baltimore/Washington Corridor. Don't I have enough chaos in my life already? 

• Waiting on a possible new doctor to schedule the beginning of a medication trial for my 8 year old. First we need the evaluation summary from the NeuroPsych evaluation last month AND we need the doctor to call me back to schedule. I've been waiting since Thursday... 

• We need to "catch up" on our Behavioral Psychology appointments, somehow I made it out of the office at the last appointment without making another one. I have no idea what I was thinking, but now I'm scrambling to get back on track. Meanwhile, maybe we need to add to our behavioral goals to start addressing my 11 year old's obsession with pregnant bellies and my 8 year old's total terror of having his teeth examined.  You know, those little issues.  

• And my phone just won't. stop. ringing. NONE of the calls are the call-backs I'm expecting either. 

So apparently the world has turned against me today, it's decided to gang up against me and put that eternal optimism to the test. Little does it know, I have wonderful outlets like this blog which allows me to Rant and Rave and be the Lunatic that I am. I also possess the ability to run in shut-down mode similar to when someone is experiencing hypothermia and the body stops supplying the extremities... very soon I will be shutting off my Autism extremities. Lastly, is the knowledge that tomorrow is a new day. Midnight is the magical moment that the reset button is hit and with that today will be pushed into the past. I have no idea what the future will bring, but I'm looking forward to finding out. 

Days That Turn on a Dime

I think most of my 'I hate Autism' days don't actually start out as bad days, I think its more that they are going along masked as regular days that just switch without notice.  Then you are looking back wondering, "Jeez! What went wrong???"

Today is one of those days. By all accounts a boring day, I had to drive around in the morning, had an appointment around lunch and then spent the early afternoon at my desk trying to catch up on bills, calls and all that fun stuff that never ends. When I left to pick up the boys from school, everything was quiet and there was no hint that today would turn against me.

The boys got in the car and my oldest talked about the Standardized State Testing he did today, "I did great!" he said. My youngest was happy that he didn't have testing today. The radio was on Pandora One and we were headed home. Thats when it turned. A song came on that my oldest didn't want to hear, I suggested we give it a try and he demanded that we turn off Pandora and listen to the radio station instead. I don't respond well to demands, I turned it off.

What I EXPECTED was that he would get angry. I would tell him that making demands would not get him what he wants and he needs to use his manners. He would then begrudgingly say, "sorry, can you turn on the radio, I don't like this song." I would say, "thank you for the apology, I will turn the radio back on." I expected a no-fault conversation, a teaching opportunity and some give and take. 90% of the time this is how it goes. That was NOT how it went today, welcome to the 10%

Instead what ACTUALLY happened was, after I turned off the radio he picked up something around his seat and hit me with it while I was driving. This was not the first time and I am getting better at diffusing situations like this. When he reaches this level of anxiety and anger there is no reasoning, no teachable moments, no give and take. His communication breaks down and mine has to meet his level. This is very very hard to do when I want to howl in pain, scream at him for hurting me and ground him for a month. None of which would make me feel better and even more importantly none of this would help him calm down, quite the opposite actually.

So here is the ugliness of Autism, the pre-teen years.

• Emotional level and physical age are no where near equal. In all kids this is true, in Autism (and many other disabilities) the gap is so wide it seems unscalable.  This year, more than any other, I've thrown my son's physical age out of the equation. 

• Hormones are a bitch. The fluctuation of hormones are horrible even when you understand what is going on, imagine if you didn't understand it. 

• Hormones + Anxiety + ADHD + Autism + Impulsivity = a recipe for disaster. It's not a matter of IF, it's a matter of WHEN. 

• To me it looks like, sounds like, feels like a temper tantrum. Like a 2 year old laying on the floor, kicking his feet and crying and you have NO IDEA why. He wants something, you aren't a mind reader and the helplessness is overwhelming. I can be transported back to that young mother who has no idea what to do in a second, but then I remember... I'm a seasoned professional! 

I could probably go on and on with the reasons why having Autism and going through puberty is difficult but, as usual, I've gotten off topic. More importantly, figuring out the reason WHY for a behavior is not about making an excuse (most times there is no acceptable excuse anyway), it's about finding the cause, learning from it as a parent and using it as a tool to help him through next time it comes up.  

To that end, what would cause my 11 year old to FLIP OUT while driving home from school?

Did he hate the song on the radio so badly? Did he want something familiar and comfortable instead of new? 

Did he want to have his own way just because he wanted to assert himself?

Was he exhausted from a long day? Did it take a lot out of him to do the standardized testing today? Did he hold it together all day, just to fall apart in the car where he felt more safe to do so?

Did he need the pressure and input he would receive from hitting something? 

Any of these are possible. Again, none are an EXCUSE for the behavior but possibly an antecedent that I can learn from. 

In the end, we did make it home without any more hitting. There was a lot of yelling from my son, mostly scripts filled with "red words" and threats of no consequence. He says he will throw my phone in the trash (I wish someone would so it would stop ringing all the time! But I do not say this.). He says I am "hurting/killing his brain" which makes me think there is a physical pain he is having but cannot verbalize. My response is no response. I hate what he is saying, some of it hurts my feelings but any feedback I give him is turned into fuel for his rage. He wants to know if he will get his "screen time" and there is no way in the world I am going to say NO and risk being hit again until I am home. 

We get home and he yells something while he is getting out of the van. He closes his self-closing van door and gains no satisfaction from that so he walks around the van so that he can slam the door I left open while I got the mail. He walked into the house, went to his room (as instructed) and slammed his door.  I don't like it, it's not how I expected my day to go but sometimes these days just turn on a dime. Learn what you can, keep it close to you, teach it when he is calm and hope for a better outcome the next time a new song comes on the radio.

School Tour: (Part 1 of 4) Katherine Thomas School, Rockville, MD

Although this won't be directly applicable to my all blog friends, unless you have a child in Maryland or are just curious what other states offer, I'm in the process of touring private Autism schools for potential placement for middle school. If I have to do the leg work, I may as well share the knowledge with others, so welcome to my 4 part special edition of Rantings where we will look at Autism schools in Maryland!

Four schools were recommended to me by my Behavioral Psychologist so that is where I am starting, they are: Katherine Thomas School, Hannah Moore School, Kennedy Kreiger Institute and Ivymount School.  My criteria were high functioning Autism programs, diploma bound, and middle school placement (although I will share any knowledge I gain from lower and upper grades as well). The school I visited today was:

Katherine Thomas School 
part of The Treatment and Learning Centers (TLC) which offer Outpatient Services, Family Hearing Center, Testing & Tutoring Services, Lower, Middle & High School, Summer Programs and The Early Learning Center

9975 Medical Center Drive
Rockville, MD
School URL

Upon entering the school I was asked to fill out a small form and then went to a music classroom for drinks and snacks. There was a small group of Moms and we were given the school brochure, application paperwork and pamphlets outlining the many services the school offers as well as a sample schedule for each grade in which we were interested. I was the only entering Middle School parent, there was one High School parent and the rest were Kindergarden-First parents. The Admissions person and a Speech Pathologist gave us an overview of the school and answered our questions. Lastly we were divided up by grade and given a tour of the school.  Thats all the overview stuff... here's is the "meat" of the tour...

• Katherine Thomas is a school for ADHD, High Functioning Autism and related diagnosis. They do not accept Emotional Disorder (ED) students.

• They utilize the Common Core Curriculum.

• There are 8-10 students per class, each class has an instructor and and aide but it is not uncommon to also have an SLP, OT, Reading Specialist or school counselor in the class as well.

• They offer pull out services for Speech, OT and PT (see special note below regarding fees)

• Language Arts is broken into two sections, the basics of reading and comprehension and each is taught at the child's level, not grade level. Extra time can be allocated with the reading specialist during their "elective" block if necessary. Technology is a big part of the LA programs especially for kids with writing difficulties or dyslexia.  

• They are utilizing Everyday Math for their math program and are also starting to implement Touch Math as well.  Additional math can be allocated in the "elective" block if needed. 

• The school currently utilizes computer and laptop technologies and is working on an iPad initiative to give all students access to iPad technology and applications.  

• This is a PBIS based program (positive behavior incentive system), there is no restraint and no seclusion room on site. They teach self advocacy individually as well as pragmatic whole class instruction on Social Skills. Students are encouraged to take breaks, utilize sensory equipment located throughout the class and halls and Brain/Body exercises and seated Yoga are implemented within the class setting.  

• The school offers all the regular specials classes (gym, music, art) as well as electives.

In my tour I was able to actually walk into the Middle School class rooms which I was not expecting.  Once in there I saw kids learning and learning well. The students looked comfortable and focused, they answered questions when called upon and raised their hands as well. They were not bothered by additional people in the room. I witnessed small group instruction as well as whole class instruction. All in all it looked like a very nice school. (The "but" comes later....)

Kindergarden-5th classes are the same small class size but in the younger grades the classroom model is not one of group instruction. The school utilizes Greenspan's Floortime model with Sensory Integration with the youngest of the students. The classroom is developmental level and curriculum based,  and is an active and play centered learning environment. After first grade the students transition towards group activities and classroom style learning with Third grade and on being a more traditional classroom.

Middle School classes are traditional classroom in structure with additional supports in place. Students change classes and have lockers in the hallway similar to a typical school. Instruction is still individualized and there is "elective" blocks within their schedule. 

High School classes are traditional classroom in structure with additional supports. Again, students change classes and have lockers. In 11th grade, students participate in an internship program for 2 hours each day. 

The last bit of information is the cost/fees/etc (these never fail to shock me, even though I research it). 

• Application fee is $125 (non-refundable).
• Preschool Tuition is $15,756.62
• Lower/Middle School (K-8) is $24,951.41
• High School (9-12) is $29,568.44
• There is a $1500 (non-refundable) deposit upon completion of the admissions process to secure your placement. This is applied toward your tuition.
• There is an annual Activity Fee of $1,200

Lastly there Related Fees. Speech, OT, PT and Counseling are billed separately. These are Fee for Service and may be reimbursable with Medical Insurance. The school accepts and can direct bill Cigna insurance.  Hours are allocated on the IEP (for School Funded Students) or DPG (Diagnostic Prescriptive Goals for private pay students). There is an addendum in the paperwork that states that, "Students who do not require any related services are likely to need a less restrictive school setting than KTS.". The billing rates for these services are:

• SLP $103/hour
• OT $111/hour
• PT $111/hour
• Counseling $107/hour
• 1:1 Aide $24.24/hour

My thoughts:

Although I can see my son being successful in this program, I left the school with an unease that has yet to leave me. I am unsure exactly why this is... 

It could be the cost because, lets face it, it's staggering.  But really, the only way my son could attend would be if he was school funded so that can't be it.  

It could be the location. The school is outside our county, about 35 miles away on one of the busiest Interstates in the entire country (I-270 towards Washington DC) which I would have to drive twice daily to take him and pick him up from school.

It could be because time is a constant and because of the start times for both my sons' schools it might be physically impossible for me to drive them both. My youngest is not eligible for bussing because he is an out of district transfer. If my oldest is sent to this school, the county would be responsible for bussing but I'm not sure I WANT him on a bus, that long, in heavy traffic. Sure, fine, I accept it, I'm overprotective, I know that.

It could be that the admissions person told me in confidence that they have never been able to place a Frederick County Public School student in their program. Both times they have tried, the county sent them applications for kids with Emotional Disorder (ED) of which the school expressly prohibits. 

It could be that residual anger that I feel for the fact that our public school system is failing these high functioning kids so completely.  I KNOW my son isn't the only kid who needs a better learning environment in the county. I KNOW my county does not have an Autism program for kids on grade level. I KNOW they want all kids in inclusion.  

It could be that with visiting this school, I have now removed one more option that doesn't look to be a likely solution. There are only a finite number of options for kids like mine and I hate to cross off even one.  Not even one.

In conclusion, Katherine Thomas School is doing a lot of things right. It looks like a good program and a good school for High Functioning kids. I think my child and children like him would benefit from a school like this. I'm not sure it is the school for us, but we would be lucky to have an opportunity like this.  

The Unfairness of Acronyms

It occurred to me today after my second IEP in two weeks that there are just some things I just shouldn't know. I'm not a teacher. I think I *maybe* wanted to be a teacher for about 5 minutes before I realized that I do not have nearly enough patience. I do recall wanting to be a Special Education teacher but I don't really know why that was what I had chosen. But seriously, I do not have a fraction (mili-fraction, is that a word? It should be) of the patience I see in the teachers at my sons' school.

My degree doesn't even come close to education, law, medicine or psychiatry but with my boys, I can certainly see where studying each of those even for a little while would have been most helpful. My first run in with the plethora of acronyms I would one day know and use daily in normal conversation was DSM-IV. I had NO IDEA what that was when I read Cameron's first formal evaluation and no one explained it to me at the time. Actually, I remember reading that evaluation while sitting behind my computer with a search engine open. There were that many words that I didn't know. But right there at the top was Cameron's name and then DSM-IV: 299.00. First up, what was DSM-IV and secondly what did 299.00 mean?

That's Autism (according to the medical professionals) 

DSM-IV 299.00: is the Diagnostic and Statistical Manual (of Mental Disorders) - Version 4 (IV): Pervasive Developmental Disorders category (299) . Current or Active State (00)
299-299.9

But WAIT! There are changes... enter DSM-V and an excellent graphic that shows the proposed changes:

That day sitting behind my computer was just the beginning. Today I found myself saying,

"The IEP has to be continued after the SE completes the FBAs and Data Collect. Then we can make the IEP goals more accurate and verify that there are enough PBS in the BIP."

What did I just say?  About once a month, I think to myself: WHY DO I NEED TO KNOW THIS STUFF??? The Answer: 299.00

After almost EVERY meeting, I have a list of things I have to go home and look up. Sometimes it is something I've looked up before. Because just because I know the acronym, that doesn't mean I know what it is! I wonder if I will ever fully understand this diagnosis, all the ins and outs, all the educational implications and medical issues.

Forget what my diploma says (I don't even know where it is!), forget that I ever received that BS (another acronym!), I'm currently in the school of Autism and graduation day is far far away. Until then, for those of you in the trenches like me, here are some of my favorite cheat sheets. You may not know what each acronym means or the overall purpose of the hippocampus but this will get you by until you can go home, grab some hot tea and a plate of cookies, a notepad and a pen and Google to your hearts content.

A non-exhaustive list of Special Education Acronyms, I think I could add a few:

The brain... ahhh... the brain. It is amazing that it can do as much as it does. 

I just LOVE this graphic of the brain and which parts do what. I imagine seeing it in some old-time book with brittle pages. 

Above all, understanding the Acronyms don't mean a thing unless we understand our children first. The most important part of being my Son's advocate isn't about understanding what words mean what, it is about understanding THEIR words (gestures, signs, PECS) and being their voice. They rely on me to speak for them and if I don't understand them, I can't do my job.

IEPs and Options

(**this is seriously what my brain looks like before an IEP**)

There is a reoccurring theme in my life... options. While I am thankful that I have options to chose from in life, I will admit it makes everything damned difficult. Going in to college my grades were consistent and I scored the exact same score on every single section of the ACT. When I went to the guidance counselor to inquire about a good career path I always heard, you can do anything you want. That is so not helpful to a person who has no idea what they want to be when they grow up (and still doesn't).  In the end the fact that I switched majors almost as often as I changed the oil in my car has served me well as a Lunatic Autism Mom.

Maybe it's my personality, maybe it's the way I do things but again and again I tend to look for all options and then cross them off one by one until an obvious choice presents itself (at least I HOPE an obvious choice presents itself, this isn't always the case).

Another thing that tends to serve me well as a Lunatic Autism Mom is naivety. That isn't to say un-educated but naive. Going in to an IEP, I have my list of options, thoughts and notes and I am naive enough to think that the IEP team will be willing to hear them. Lucky for me, that has always been the case (although I know that isn't always the case).

I have an IEP tomorrow, a big one. My 11 year old is going to Middle School next year and the big question is... where? His "team" have completed an FBA (functional behavior assessment) with two data points (5 teachers and staff answering the same behavior questions in November and January. We have pulled all the data with how often he accesses some of the key elements of his school program and we have updated the IEP to reflect an accurate picture of his day and the supports he requires to make it successful. It is my hope that all of this information will lend itself to an obvious school placement.

It will not. 

Because I fear there isn't one. The Hubs and I have compiled a list of options, thinking both "inside" and "outside the box". Creativity, by the way, does not lend itself well to educational options. Some of the options are completely unacceptable and it would take a miracle for me to approve them, but when I make a list EVERYTHING goes on it.  In the end, our list looks like this:

• Full Inclusion
• Pyramid Program (behavior based program)
• 50/50 Inclusion & Pyramid
• Non-Public Placement
• Out of county placement
• Homeschool
• Inclusion for Core Curriculum only (science, math, language, etc), Homeschooling for everything else (art, PE, music, life skills).
• Online School
• Moving into the woods, putting up a 15 ft privacy fence, sticking our heads in the sand and hoping it will all figure itself out in the end. (kidding, sort-of)

I can list major Pros and Cons for each of these. I wish so much that I could include an option for "high functioning special needs classroom with inclusive opportunities", where I live this isn't an option.

So, tomorrow we have the IEP, it won't be our last for this issue.  I fear it will be one of many but, today, all day today I get to live in a world where there are options. Tomorrow, the "team" will take many of these away. I'm not sure how it will go and I don't really know what to do to prepare. But, I am 100% certain that by lunch time tomorrow I will be a very large, numb, mass of exposed nerves.

Thanks for listening to my rant. <3

Thanks Ryan. 

Sometimes Tears Fall

Sometimes tears fall. There are days where you wonder why life has to be so difficult. There are days where you cry out of joy for a spoken word or a direct look in the eye. Today I cried for a hug.

There was a time when I couldn't take my boys to have their picture taken. Like many barber shops and kids hair cutting locations, we had been kicked out of many photography studios for my boys being "uncooperative".  I had decided to give up on the beautifully staged pictures I saw on so many other mom's walls. I tried to come to terms with the idea that I would never have a candid shot taken by a professional photographer that would capture their spirit on film.

Lucky for me, I belonged to a Mom's group. I had tried Mom's groups before but usually couldn't participate due to appointments or was asked to leave because of Cameron's erratic behavior, but this Mom's group was different... it was primarily online. They had play groups and Moms Night Out, book groups and forums for selling all my baby crap. I loved this Mom's group. Those days when we couldn't go out, I could stay in and still belong.  Not only did I make some very close friends that I keep to this day, I was able to receive help and in turn help other Mom's going through the Autism diagnosis process. I also met a very patient woman who was just starting her photography business.

She offered "mini" Christmas sessions in her home at a reduced rate and said that the boys behavior would be no problem. I was so worried and stressed about it but willing to take the chance on getting a beautiful picture for my wall. We weren't there long, we didn't have to be. As my friend promised, she was patient and let them do that they wanted, snapping pictures all the while. When I received our pictures on CD a little later I cried. There was my boys, their personalities shining through! We finally had a beautiful family picture and a picture of my two boys together... PLAYING TOGETHER. These pictures mean the world to me.

I tell you this story not because I want to commiserate on the difficulties of having a family photo taken but because this wonderful, amazing, talented, photographer and friend of mine lost her home and two daughters in a fire last night. Her husband, youngest and oldest daughter survived.

(photo from Frederick News Post by Travis Pratt)

I learned of this after I had dropped off my boys at school and by the time the school day was out, my amazing Mom community had banded together to ease the burden of this family by setting up donation sites and fundraisers all over the county. Their house was a total loss, saying they lost everything is an understatement with the loss of their beautiful daughters as well. If you would like to donate, here is the information: Lillard Family Donations

So today when I picked up my boys, I asked them for extra hugs. When they asked why, I said that I was sad today because I had a friend that was sad. When they asked me why I was crying, I told them that sometimes people cry when they are happy, sometimes people cry when they are sad and sometimes when you know someone is hurting really really bad sometimes tears just fall.

I'm So Frustrated!!!!!

You probably think I'm talking about my boys, right? NOPE! They are perfect in every way, at least to me. But I am frustrated, it started as an annoyance, then a disturbance and now it is a full fledged frustration! 

Why are there so many people, institutions and groups that say they are here to help and support the Autism Community yet they make it IMPOSSIBLE to receive that help and support???? 

If you are an Autism parent I'm sure you have read an article or received a recommendation to look into Intervention (I'm going to use that as a general, all encompassing term). You think, "Wow, that sounds amazing. Maybe this is what I've been looking for to help my son (daughter)." So you go online and hit the Googles to see where it takes you.

Website A says, "Serving the Autism community since 1997" 

Website B says, "We are here for your and your child" 

Website C says, "A comprehensive approach of mind, body and spirit to help (or CURE!) your child's Autism". 

Depending on what you are looking for, I'm sure one of these sounds great! Since you've got time, right now, you pick up the phone and call immediately. After all, you want to help you child right now! Does your conversation sound something like this?

Me: HI! Your intervention was recommended to me by a friend (doctor, family, school),  I've read your website and it sound like something we would like to try. 

Intervention: Thanks for calling, we are here to help. Let me just get some information about your child and his diagnosis and we will get you scheduled right away! 

Me: Great! (proceed to re-live your entire pregnancy, the birth of your child and every single step, utterance and skill gained in the first few years leading up to the diagnosis. Then go to to answer questions about his (her) current therapies, doctors, school, etc. But seriously you are a ROCK STAR MOM (DAD) because you know all this info, you don't need the baby book or contacts list... you've got this!) 

Intervention: Lets get him (her) scheduled right away! Our initial consult is $500 not including lab fees which will run anywhere between $500-$1500. Follow up consultations will be $150 per hour and we will need to schedule your child for weekly visits to make adjustments until we are sure the Intervention is working completely. There is a $1500 deposit due at your first appointment and all other payments will need to be made at the time of your appointment. 

Me: Wow, thats a lot. How do you handle insurance, we've got excellent coverage. 

Intervention: We don't take any insurance. It is your responsibility to submit for reimbursement to your insurance company. 

Me: Okay, do you have any idea from talking with other families about how much of this could potentially be covered?  

(Because this person is extremely helpful, but that isn't always the case he/she answers)

Intervention: Some of the lab work is covered, most insurance companies deny the claim the first and second time but occasionally I do hear of a parent who will get some portion of the follow-up visits covered under the mental health part of their policy.  

Me: (being optimistic) Ok, I'm on a first name basis with Blue Cross Blue Shield anyway, I don't mind submitting the claim. But, hey, we also have the State Autism Waiver which specifically covers Autism treatments! 

Intervention: We don't accept any waiver programs. 

Me: Okay...  We'll figure it out, how soon can my son be seen? 

Intervention: Our current wait list is 6-8 months long. We can put you on the cancellation list although people rarely ever cancel. 

Me: (Thinking: Of course not, after waiting 6-8 months, who would cancel?) And how is it that you want to HELP the Autism community? You don't take insurance, you have a wait list so long that we will have different issues by the time we are actually seen and you make it all but impossible to actually receive HELP?? 

Alright... I don't actually SAY that last part, BUT I WANT TO!!! Stupid manners and my inability to forget them sometimes!

Here's my point... I WANT to help my kids! I'm a researcher at heart and I've read so much about all the different ways I can do that, but at some point there comes a time where I have to realize that I'm not a doctor, neurologist, teacher specialist, naturopath, and to go further I have to consult someone who is supposed to know what I don't.  If you are really, truly in the business of helping the special needs community then why wouldn't you set up your business in such a way that we can access the help. Why does Every. Single. Step in our attempt to help our children have to be so damned difficult?

I've only recently changed my thinking from, "I need to prepare the world for my child" to I need to prepare my child for the world. It is up to me to prepare them to deal with difficult situations, I cannot assume that every person on the planet is going to be understanding of their quirks and needs. I cannot assume that someone will be able to look at my child and know that he is having an "Autism moment" and that he just needs a little time and space. (Insert mommy freak out about police and other authority figures who have mis-interpreted Autism behavior as aggressive and the horrible outcome of those instances. Remind me to stop reading the news)

In my research, I've decided that my focus will be on Education, Neurology, RDI, NeuroFeedback and Clean Eating. In each and every one of these I have run into a brick wall in some degree or another:

Education: The high functioning special needs community is the least served community in the education system. If my child couldn't talk, we have an excellent program. Anything more than that, forget his needs, we will accommodate him in inclusion where he won't fit in and could be mocked and teased for his typical ASD behaviors. Lets forget all about his own community of peers that would understand and accept him more easily, they are scattered through out the county in other schools' inclusion classes.

RDI: There is something about RDI that "speaks" to me. It could be that it is parent implemented or that it allows for the re-teaching of skills missed at younger ages but there is something about the basis of the intervention that has me going back to it again and again. RDI is not covered under insurance and is even less known than ABA (although the current revised version of ABA sounds an awful lot like RDI). What is RDI?

Neurology: Autism is a brain disorder, current mapping shows scattered neural connections in most ASD brains. Most ASD brains are larger than average. Seizures are a common secondary issue. But your child doesn't have seizures. You don't need a neurologist so it's not always covered by insurance and most neurologists won't see you based on "My kid has Autism".

NeuroFeedback: "This treatment is classified as experimental, no accepted studies have proved this to be a successful intervention"says,  Insurance Company. NeuroFeedback is a qualifiable, data driven intervention that uses your child's actual brain waves to "see" inactivity and then complete exercises that creates new or strengthens neural pathways. It sounds like a really great intervention for ASD, ADHD and Anxiety to me. What is NeuroFeedback?  Side note: I did BioFeedback last year to see if it was something I thought an ASD child could do as a means of reducing anxiety. Shockingly enough BioFeedback was covered under my insurance (Isn't it "experimental"? YES) but I do not think an ASD child (especially with ADHD) could do BioFeedback. In my opinion BioFeedback requires an Active Participant though breathing and imagery whereas NeuroFeedback can be completed with a Passive Participant through games.

Clean Eating: No diet, no plan, no intervention, no elimination, just eat real food, as close to its natural state and without any junk added. This is just something that I want to do for our family and for myself and it's hard. I have zero time to cook from scratch, the boys don't always love my replacements to their favorite foods and sometimes fast, junk food is easier. It's not all the time, we do what we can, when we can.

Thats my rant today, I love my boys, I love their quirks and I'm in no way trying to change who they are or "cure" them. I just want them to be open and available to receive the education that could be their chance at independence (or close to it). I want them to have every opportunity and to get them there, I just want the chance to access interventions by professionals who claim they want to help the Autism community but don't actually make it possible for many families. To be quite frank, this is an issue that reaches outside the medical field and encompasses Intervention in many forms, educations, insurance, future planning, therapies, skills training and community.

Manners be damned, next time someone tells me, "there is help out there for your ASD child." I'm going to say,

Thats great! I can't wait to see what hoops I will have to jump through this time!