Friday, January 25, 2013

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!



Sunday, January 13, 2013

Oil vs. Water

I remember back to the day of our diagnosis. I was five months pregnant with Adam and Cameron was 2.5 years old. I remember having a very frank conversation with my husband in the weeks after about whether or not it would be better to have two kids with Autism or one with and one without. The doctor had so helpfully informed us that we had a 20% chance of a second Autistic child just before he gave us the pamphlet about the Sibling Study they were doing.

We weighed the pros and cons, spent countless hours trying to decide if it would be easier to have two ASD kids or just one. Maybe if they were both ASD then they would form a bond and be each others true friend. Maybe if one was neuro-typical then he would be able to help take care of our ASD child in the future (I know, a totally unfair thought but we had it). And we went on and on for weeks.... like we thought we had a choice!!!!  hahahahahahaha! I see now how absurd those conversations were but I guess back then we still had time for absurd conversations.

In the end, we got our wish, or we didn't. I don't think we ever came up with a conclusion or a preference, but we have two boys with Autism.  What we did not expect was that we got OIL and WATER Autism! Every strength in one is a weakness in another. Every interest one has the other cares not a lick! One talked late, one talked early. One walked early, one walked late. One just "gets" math, the other has excellent reading comprehension. One is oil, one is water.

My boys are proof positive that every child is unique, every child with Autism is different and every disability has an ability.  Ask me today if I would rather have two children with Autism or one typical and one ASD and I still don't think I would have an answer. At this point it doesn't matter, and it didn't back then either. No matter what the outcome was going to be I was going to be their Mom and that is exactly what I wanted.

Saturday, January 12, 2013

NFL on Autism

I think it's pretty safe to say that it's possible the first Neurotypical thing Cameron did was to pick a favorite team and forever pledge his allegiance to the Baltimore Ravens. Right now he is in the basement watching the playoff game on the "big tv" and I'm left thinking of how the NFL has fit into our family. Good, bad or indifferent, here are our family football stats:

The Baltimore Ravens won the Super Bowl a week after found out I was pregnant with Cameron, we were in Fells Point, Baltimore watching the game with friends. I spent the majority of the game feeling a bit queesy and trying to avoid drinking Diet Coke (even though I reeeeealllly wanted it).

Cameron's favorite team is the Ravens, his second favorite team is the Vikings and no one knows why. And he's not saying.

Adam roots for whatever team is playing against the Ravens just to see Cameron get mad about it. He doesn't care at all about football.

We do "Game Picks" just like Sports Center weekly, Cameron has a book which lists each game of the week and picks happen on Wednesday night or Thursday morning. Cameron's guessing average is excellent.

NFL taught Cameron all about beer and his favorite scripts last year revolved around beer commercials. One of his second favorite scripts is for Viagra, you can imagine how well both go over in school.

The "discount double check" might actually push me right over into insanity this year. The commercials are bad enough, the constant scripting afterwards is even worse.

Cameron has gotten in trouble at school over a football related argument, sometimes with teachers.

When he doesn't know what to talk about in a social situation,he talks football. This actually is a pretty typical point of conversation out in the world so this is pretty good. He still doesn't fully understand the finer points of conversation though so prepare to talk NFL for the duration, even hypothetical games that aren't planned this season.

The NFL gave him acceptance. We have spent time as a family at a local sports themed restaurant, the kind that has huge tv screens everywhere. We went to watch a game and eat out and Cameron's face lit up when we scored a touchdown, he jumped up to yell and so was everyone else! He didn't get in trouble for being loud in a restaurant and even got a couple of high fives from the table next to ours.

Following the Ravens is something he does with Dad, from the start of ESPN game day to the end of the Ravens game is "guy time".

Last years loss in the playoffs left Cameron bereft, he cried for hours and was still upset the next day.

Right now I have 8 game minutes left in this game and it's still too close to call. There's no telling how the day will end in our house.

For me, today, the NFL has allowed me to change my train of thought. After lunch I had my own mommy meltdown complete with heartburn and tears. My brain went to an upcoming meeting, the beginning of the transition meetings for Middle School. The only word that I can put to the feeling is terror, absolute terror and for many many reasons. BUT then the game started, it was "guy time", I made an italian feast in honor of game day and there is still 5 minutes left in the game.

Good, bad or indifferent, I'll take it and be thankful for each and every second.

Tuesday, January 1, 2013

Autism Takes a Holiday

Thats an interesting thought, isn't it? Of course I don't mean that Autism left our family for Christmas and New Years but instead we left Autism. It is never far, of course, but from December 21-Jan 1 there were no calls to make, no prescriptions to fill, no teachers to confer with and no doctors appointments. So for us, every Christmas season, Autism takes a holiday.

Today is January 1 and tomorrow is back to school, back to routine and back to all the appointments and schedules. We prepare for it by making sure the backpacks are packed and the laundry is caught up (mostly) but there is almost no way to prepare for my 5th grader's anxiety at returning to school or my 3rd grader who has changed from, "I don't want to miss my friends!" on December 21 to "I don't want to go to school!" today.

We can only write the schedule out, tell them that their classmates will be excited to see them and hope for the best after drop-off tomorrow. Additionally, I will leave a note in their lunch box, make sure they are wearing their favorite clothes and assure them that I will be at the school "right on time" at 3:15.

It's hard to say bye to the holiday season, especially when Autism Takes a Holiday. There is comfort in the routine that is awaiting us, even if the pace is a grueling one.

Happy 2013 readers! This year will be full of trials and triumphs, sun rises and sun sets, mis-takes and do-overs and in the end let the good outweigh the bad just as it did in 2012.