Friday, October 12, 2012

Show me the money

I am beginning to really understand how our income is becoming a factor in Cameron's future. It certainly stinks to be lower/middle class with a child on the spectrum. Every good parent wants to give their child the most they can, but when that "gift" is a chance at independence, it tugs on every heart string you have. We are about to embark on yet another attempt at potty training. This will be our 4th major attempt, and hopefully,the last. Back when my husband and I originally met with Cameron's teacher, they simply told us not to even worry about until they began training him in school. His teacher then told me that 9 out of 10 kids that they had the past year were potty trained by the time they were ready to move up to the next class. That was nice to hear, but I had at least 3 failed attempts under my belt and had read how hard it is to get children on the spectrum trained by other parents.
The usual "big boy cartoon underwear" wasn't a motivating factor. I guess that is good to know, since I spent a pretty penny getting a ton of cartoon underwear packages about a year ago... which, now are all too small anyways. Food has never been a motivating factor for Cam, and stickers and praise don't seem to mean that much to him. My first attempt was the 3 day method. You know, strip your kid down to underwear and take them to the potty every 10 minutes. After day 2, I saw no improvement, an increase in bad behavior and a new fear of the toilet. I also tried taking his frog potty and sitting him on it naked while he watched his favorite cartoon. I felt like I wasted 15 bucks to buy that plastic potty. I fed him salty foods, gave him plenty of liquids, and all he did was scream and pee all over the house. He also would run and hide to go poop in private.... usually in his bedroom on his bed. I tried the whole praise thing and switched to a potty ring on the actual toilet. We tried getting him to pee outside in the back yard after watching daddy...  nope that requires him to imitate.... something he doesn't do. He seems so ready but beats to his own drum. Especially when he takes his diaper off and parades in the nude, or takes his pull up off after pooping and throws it into the kitchen sink... or worse. One time, I was asleep in the middle of the night and he took his fresh poopy pull up off, came into my room and placed it, poop side down on the edge of my pillow. That was not a nice way to wake up in the middle of the night.
 In the coming weeks, his teacher andaides will ask for spare clothing, pull ups, underwear, and will begin taking his pull up off and putting him in underwear. I really want this to be the last attempt. It is not cheap to have 2 kids in some sort of diaper and I hope that we aren't like a lot of other ASD families facing untrained 8 year old kids. Can you imagine the cost of diapers/pull ups and incontinence supplies? Sad to say, I have already done some research to figure out if insurance can help with those kind of "medical supplies". Recently, we have been able to get him to poop in the potty, and he peed this morning when I didn't give him much of an option. It just isn't consistent. I feel pretty defective as a parent for not being able to get him trained at this point, but what do I know? I am having to learn and relearn solutions to even basic things with my kid. He's my first kid, and I truly fear potty training his little brother at this point too.
Speaking of fear, A few months back, we went to a Developmental Pediatrician to finally get some tests run to check for chromosomal abnormalities.We got a bill for a pretty penny just to see this doctor and have these tests done. No major chromosomal issues existed, although at one point, we were told that he had a defect found on his 15th chromosome. It made sense because he did also have a birth defect with the location of his urethra known as Hypospadias. (Please don't do an internet search unless you just want to stare at deformed genitals! I warned you!) That is what prompted us to get more detailed testing....the sad thing is, if he HAD a chromosomal abnormality, then there are insurance laws that require insurance companies to fork out more for therapies, medical supplies, ect. What we found though was that it was ruled an inconsistent finding and a flaw with the test method used... so, no chromosomal issues, BUT the developmental pedi did say that his amino acid levels were extremely high.I am thrilled to know that he doesn't have some chromosomal issue,but in a way, I feel like my battle with the insurance companies, doctors, and schools just got tougher than it should be.
 What the amino acid test means is that some of the most essential acids that the body needs are not being properly absorbed by his body and are just being built up in his system. Some are potentially toxic and could kill. It could mean a liver defect, or other gastrointestinal issue. Maybe that explains his frequent constipation and some of his food issues. The big news though is that the developmental pedi. needs to refer us out to a genetic/metabolic disorder doctor. I figured this wouldn't be a big deal since I live in a city with a huge teaching hospital. Little did I know that this kind of specialist is very rare throughout the nation. Luckily for us, there is one close enough that we can drive to it in one day. We will be making an appointment on Monday to go to a children's hospital about 5 hours away. We are hoping to get in before the end of the year.... So, what am I expecting to see out of this?  It isn't going to "cure" him from Autism, but there may be a medical condition to explain some of his symptoms. There may be some medical issues that can be solved or helped, thus easing his life. It is also frequently common for people on the spectrum to have co-morbid medical issues. The most common of these is gastrointestinal issues, heart and other organ defects and hearing difficulties. I really just want to make sure that he doesn't have a condition that hinders his quality of life or shortens his lifespan.
This visit is a huge financial burden, and is happening at a really bad time of year with holidays coming around the corner, but has to be done. I would  hate to find out that we waited on something that could be easily solved. Sadly for us, we will have to pay for our expenses to make this trip and the entire doctors bill. Our insurance deductible hasn't been met and will not cover anything until that deductible has been met first. I just hope our extended family can understand that their 20 dollar Christmas gift that we would have bought (and they would have probably hate or re-gifted anyways) went to pay for this trip, and that my boys are still young enough to like playing with dollar store finds rather than the neatest, coolest "gotta have" gift that costs an arm and a leg.
Along with all of the bloodwork that was done by the Developmental pedi, we got a prescription for private Speech and Occupational therapies. 2 sessions per week up to 45 minutes a session. The cost AFTER insurance adjustments would be 200-300 bucks a pop until our deductible is met, then 50 bucks a session after that.... so, even after deductible, we are looking at at least 400 a month with that kind of schedule
 I found a place that I wanted to go with and went to go see if we could get him in. They told me that they were waiting on my insurance carrier to approve them as an in network provider.... not that it makes a huge difference at first.... again, we would pay out of pocket until our deductible could be met, and our insurance has a limit on the number of therapy sessions he can do in a calendar year.   I was also told that the only way he could get in on the schedule right now was to do therapy sessions in the morning..... yikes... that means pulling him out of school at least 2 times a week, driving him to the therapists, then taking him back to school. I am now understanding why those parents with higher incomes usually end up with higher functioning kids. Love cannot "buy" the therapies he needs, and as much as I wish love, hopes and dreams could help him out, it seems like only the wealthy can afford to tap into all of the resources available. I also understand more and more why a lot of these kids are home schooled rather than going through the public school system and risking truancy issues.All I know is that we will never have enough money or time to do everything that we think could be or should be done that could help. The only thing we can do is be selective about our choices, pray, and hope that in the end we have done enough for a child that deserves every last sacrifice and cent we can afford to give, while making sure our other child is as minimally impacted as possible and afforded the same amount of commitment. Rock, meet hard place.