Mental Health

I am confused often, and – not only because of my children. My son was diagnosed at 3 years and 3 months with autism. Certainly he had many of the behaviors associated with autism, and after an all day assessment both at home and at the care center, we left Columbia SC that day in June with a new ‘label’ for my son.

I was sort of stunned when we actually got the diagnosis, despite already knowing that he did indeed have many behaviors associated with autism. So why not expect an autism diagnosis then? Just running down the list of indicators, he had check marks for repetitive behaviors, no imaginative play, tics, stimming, significantly limited/delayed speech, tip-toe walking (which interestingly he has only ever done that on that particular day), echolalia, aggression, noise aversion, sensory issues, skin picking, the list went on.

Why did I even entertain the autistic, the bipolar, schizophrenic, ADD, ADHD or any of the other labels he has been given. Mostly it is because for a long time it was the only thing that we could hold onto when faced with his strange and often out of control behaviors. It somehow made it easier to cope knowing that he possibly had a neurological disorder and wasn’t just ‘being difficult’. Oh my goodness how we were thrown through a loop trying to figure it out. He certainly has displayed the traits for all those disorders over the years, and even now he still sort of meets both an ODD and possibly ADD diagnoses.

I was always a little confused by the professionals inability to agree with each other on the diagnoses but mostly as their recommended therapies remained the same, I didn’t delve too deep. Many times though I would sit in a therapist’s office and check boxes, knowing the goal posts always moved, wondering whether to mention a behavior that had fallen away, wondering if it was really necessary to note everything that he had done in the past or just stick with the present. His behavior changed rapidly but for a long time still remained within the parameters of his diagnosis. Even in the past year we met with a pediatric neurologist who diagnosed him with PDD-NOS.

I have slowly become convinced that his behaviors are just manifestations of his limited abilities to cope. The more we work to make him feel safe, secure, wanted, loved and heard, the more he recovers from this ‘autism’ spectrum.

So then the question becomes, did he ever really have autism? If he only had the behavior associated with autism but not autism, then IS it still autism? Can one really grow out of autism? If they do, does that mean they only had a group of autistic behavior or does it mean they really had ‘autism’? I am perplexed by this chicken/egg scenario – do you have autism because you have autistic behavior or do you have the behavior because you have autism, which comes first? Truly I know some kids on the spectrum that never get better, small gains are made but nothing drastic. They certainly don’t grow out of autism, more they grow into it. They adapt, their families adapt, the environment is adapted to make it easier for them. Their parents certainly do everything, often more, that we did, so why has my son shed his diagnosis but not theirs?

Is it truly only the small % who can be genetically identified as autistic who deserve this diagnosis then? Do we need to find some other explanation for the kids who are more like my son. Do doctors need to recognize both the different situations the children are in and the list of traits and behaviors before giving an autism diagnosis?

I guess in the long run we have to wonder why we should label any of these kids. Personally I know for us my son became eligible for services ONLY because of his diagnosis. The behavioral therapy, medicaid, OT, speech etc, have all been integral in helping aid his recovery. Slowly but surely he has steadily improved, to the point where today he has really no autistic behaviors. I am convinced that he needed those therapies though. It has been noted that families of children with autism spend up to an additional $70,000 a year on additional medical services that are not covered under insurance. NY Times blog states this: “… Treatment is extremely expensive. Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health. …”

We are certainly no different. Over the past 7 years we have spent our savings searching for that one clue, that one cure, that one thing that makes the most difference, almost like Ponce de Leon in his search for the fountain of youth! For us, we have been mostly successful. The goal was never intended to ‘fix’ it was only to bring our son to a point where he could feel like he fits, to where he feels comfortable in his own skin, to where he can verbalize and converse with us and his peers, to where he can control his impulses and his emotional state. Our hope was to alleviate his frustration and angst. Again, we were different. Pills were not going to ‘fix’ him, therapies alone were not going to ‘fix’ him, and I use ‘fix’ in its loosest term. He isn’t fixed, he certainly didn’t need fixing, he needed help. He needed help bringing his emotional maturity and his intellectual maturity to a point where the world made more sense, where he wasn’t stuck on hyperfocus or overdrive. A place where his depression, anxiety and stress levels were more manageable for him.

So again it makes me ask, is it truly the group of behaviors that deems you autistic? If you recover do you still have autism? If you no longer meet the behaviors or can beat the behaviors does that mean it was never there in the first place? So many possibilities, so many unanswered questions, so many kids out there needing help, and I am still confused.

We had our 2nd assessment appointment last week. It seems B has gone from significantly delayed to almost age level (or beyond) on every item on the checklist. Thankfully we are starting to see those changes at home. I am the last person who really expected this to be a positive solution for us. After all, everything else we tried only left us disappointed. We didn’t really expect this to be any different, ever the optimists we hoped it might, but were still very skeptical. So what did we expect? Well, like everyone, we had heard lots of promises before and only ever enjoyed limited progress –  so that become our norm. We thought, “If we can just progress a little further, that will get us to the next thing!” However, in this case it seems we may have been a little off on our expectations.

I am still too gun-shy to consider calling Brain Balance a success, but certainly the progress he has made is noticeable. It would seem now at least he has the tools to be able to learn the skills necessary for living on planet ‘rest of the world.’ If nothing else, he needed the skills to be able to leave the house dressed and without argument, even if that doesn’t happen every time. I still occasionally have to tell him to go back and turn his underwear or worse, his pants around, but at least he is willing, able and in good humor while he does it.

The most  progress seen is in his overall demeanor, don’t get me wrong the melt-downs are still coming and the arguments still as fierce, but he has lost the tourette-like insults that plagued us for the past 4 years or so. He no longer refers to us a pigs, idiots or morons, even when when it’s clearly warranted! Homework time is no longer a battlefield, but simply 30 – 45 minutes of him working calmly away. He even read the bedtime story last night. His reading has always been good, but his desire has been nonexistent until now. Factual books have always been his go-to choice of reading, but even that is changing. Last night he read “Hansel and Gretal” all the way to the end with voice inflections and everything. It was such a cute, normal, everyday moment to celebrate.

Here is a sample of how his academic skills were, and now are, since we have been working with Brain Balance:

MATH, beginning on August 1st, the 2nd page is his homework from 8/26/11.

LANGUAGE ARTS: 1st picture is beginning school on Aug 1. Second pic is homework 8/26/11

His anxiety and his depression seems to be more under control at this point. I still hear “I am sad” and “You hate me” but not as much and without as much conviction as before. Although, I understand he is still sad, he is going to be sad for a while until he can figure out why and how his Birth Mother placed him for adoption. He needs to work through those feelings, thankfully at least now he seems to be closer to having the emotional and mental capacity to do that. Brain Balance does not promise a “cure” or a “fix” all they work towards is having both sides of the brain work in sync. B is always going to be left-brain dominant, but that doesn’t mean he has to also accept that his right brain should be ‘weak.’

So is all this progress due to Brain Balance? I am honestly not sure. He has had several changes in the past 2 months, one being a much smaller, more proactive school. The school certainly makes a huge difference to his academic struggles, he no longer has to compete with 23 other kids fighting for the teacher’s attention, with only 5 other kids to worry about it’s much easier for him to keep up. Then there are the allergies. Our son, of course, still has food allergies, they are not going away because of Brain Balance. He still reacts very negatively when he eats anything on the list of ‘intolerant or allergic’ foods, but since he is now so much more stable in his mood, his food infractions are almost instantly noticeable. We can actually seem to pinpoint his increased rage or aggression to something he ate within the last 30 minutes. You can visibly see him ramp up from placid and coherent to a whirling, mean, aggressive, angry boy. He almost sounds like a drunk, crying one minute and laughing or mean-spirited the next. After a run-in with some cake on Saturday night he spent the entire night alternating between mine and my husband’s ear “I’m going to kill you, I hate you, get out!” over and over, intermittently interspersed with well-placed slaps and pinches. I have to say though, neither my husband nor I am scared or think these threats are going anywhere, it’s become so normal to hear we almost switch off. Its an outlet for him, not fun to hear, but now we are very confident that the verbal will never materialize into physical, or at least not anymore. Anyway, he is changing, slowly but surely, although if you don’t know him well you might not think so.

So where do we go from here. We still have 11 more sessions left – so 3.5 weeks. He is ready to be done, while he does enjoy going, he is ready to have his afternoons back, as of course am I. Currently his reading and comprehension is at a 2nd to 3rd grade level so he is well placed for the coming year. His physical strength is far improved from when we started, and interestingly he is now swimming like a pro, head in 2 strokes and out, arms placed and legs kicking, no lessons. He now has the strength in his upper body to achieve the coordination and skill required for the correct swimming position. So we will take it one appointment at a time until we hit #36, hopefully progress will be kicking our butts by then and we can celebrate with an over-stimulating, sugar laced, sensory provoking, non-therapeutic party!

Regardless, we are making progress and that’s the best news we have had for a long time.