A picture only tells part of the story.
Rolling down a new suburban street of 1 of the 10 best places to live by one of those money magazines, everything seems peaceful and calm. But if you peer into the 12 year-old minivan racing to get home, you would see a 9 year-old child screaming in the back, kicking the seat in front of her, and reaching to punch anyone within her reach. You then would hear the father yelling to his 5 year-old son to unbuckle his seatbelt and climb in the front so the boy doesn’t get hit by any of the shrapnel of someone having a full-fledged meltdown. You would hear the other child in the car, an upset 5 year-old girl, telling her older sister to stop making poor choices. Driving at this point is about as safe as a drunk person texting while also scarfing a hard-shell taco. Hey Jeff Gordon, try this sometime if you want a challenging drive. We are talking total insanity and the worst kind of adrenaline rush. The father feels terrible that this is part of the atmosphere that his children grow up in, but some thing’s are out of his control, as much as he tries to make sure they don’t happen. This is my family and I’ve lived a version of this story dozens and dozens of times.
The first thing I would tell parents of a child who has recently been diagnosed with autism is that it is now your Number 1 job to fight like hell for your child’s welfare. Your biggest enemy will be your insurance company. You are not your insurance company’s friend and they will do everything they can to keep you from getting the services your child needs. I know this sounds horrible, but I’ve never heard a parent with a child with special needs say anything else but this being the facts.
The dictionary definition of autism is this:
A pervasive developmental disorder characterized by severe deficits in social interaction and communication, by an extremely limited range of activities and interests, and often by the presence of repetitive, stereotyped behaviors.
This is true, but only scratches the surface of what it means to many people on the spectrum. There are many physical health issues that aren’t included in this definition. From gastronomical issues to immune deficiencies, a person on the spectrum can be a very expensive proposition for insurance companies. And this is not even discussing the thing that sends money out the door the fastest, therapies. So while the insurance companies will claim they are going to give service to these people in their actual policies, they have systems set in play to continually deny these claims. It’s part of their business bottom line. They want to make it so difficult that you eventually just give up.
In regards to speech therapy, our family eventually did this, as we were concerned our credit rating was going to go down the tubes constantly fighting for the benefits that were in our policy. Assholes 1: Family with special needs child ZERO. These companies know that you don’t have the time or energy to keep challenging them, so they keep biding their time pushing denial letters your way and making it nearly impossible to get to anyone on the phone who can make a decision in your favor.
One thing we can’t do without is Maddie’s medications. We have tried diet and behavioral strategies to help Maddie with her outbursts, but the only thing that has worked for us is pharmaceuticals. Before I had a child on the spectrum, I was part of the group of childless adults claiming that we are overmedicating our children. Now, I stay out of that discussion, as I know these pills have helped give my daughter some stability.
Recent studies show that nearly 1 out of 3 kids on the spectrum have ADHD. That is definitely the case with Maddie. I have described her engine being one that is constantly running at 100 miles per hour and I’ve told doctors if she could just get it down to 70, she would be able to learn and function so much better in life. Let me tell you it’s pretty traumatic as a parent putting a 5 year-old girl who has the developmental age of an 18 month old toddler on some mood-altering drug, but you eventually reach a point where you have to do something.
When we first decided to put her on some medication to calm her it had to do with Maddie not being able to speak but a few words and having major learning problems because she had very little attention span in her early childhood classes. We were looking for a miracle, but the first couple medications we tried were far from it. They made her more agitated. The second one totally freaked her out. This is pretty typical, as just like there are few roadmaps to raising your child on the spectrum, one drug does not fit all. We decided at this point that we weren’t going to put our little girl through any more of these. Time to put your head down and try to survive the storm…until the storm gets too great and you wind up back at the specialist to see if there is anything that can save your family. Desperation is a word that should only be used during desperate times. I promise you these were desperate times were ahead.
We came back a year later, with twin babies in tow. The addition of these 2 had not been a joyous moment in Maddie’s life, as twin babies are screaming machines. To a girl adverse to loud noises, the only thing worse to bring home would have been a couple offensive line coaches. She was constantly trying to physically act out towards the twins. She would also physically bang her head against the wall until she would cry. It was breaking our heart as we didn’t know how to help her. My guess is her behavior had something to do with formerly being a girl who had gotten a 100% of her parents attention and she was going to find a way to get it back, even if it took physical pain to get it.
So when we walked back in the doctor’s office again, we needed help. Susan said it perfectly. We are a family in crisis. A big reason we hadn’t continued on the pharmaceutical road was that the next drug being recommended was a big step-up. A drug designed to help those with psychotic impulses. The doctor told us that one of the side effects is it would make her potentially groggy. My response was we can only hope. I know some reading this think that is a horrible comment. A parent hoping that some drug could make their child groggy. All I can say in my defense is unless you also have a girl who is amped up like she’s drinking redbull out of her sippy cup and is also having violent outbursts because her brain is setting off receptors like the 4th of July, you have no idea what it is like. When your child doesn’t respond to a structured schedule and still acts out after you put a gluten-free metal detector at all your doors, you are desperate, looking for about anything to help her and your family.
In case you are unaware, you have to slowly amp up the drug, but we started seeing some positive results right away. She was a little more calm and less manic. Some might feel this drug is taking some of Maddie’s natural instincts, but I felt like it was helping Maddie become more the girl she was supposed to be. Over the past 4 years she has been on this drug, taking a little more as she has grown. After she started to backslide some we added another drug to the mix a couple of years ago which has helped her with her impulse control. Maddie was far from calm, but she at least didn’t seem like she was on a constant tweeker binge.
So finally we get back to the Minivan. What had happened to cause Maddie to flip out? Over the past 5 years our friends at the insurance company had raised our private policy rates from 700 dollars a month to 1400 dollars a month and they were set to boost it another couple hundred. Keep in mind our deductible wass super high and we were not getting any therapies, so they were definitely making money off of us. Despite this, I’m sure their algorithms tell them to keep gouging since a family with a child with special needs is always a potential money loser. At over 1600 bucks a month, it was time to pull the white flag out. Assholes 2: Our family still at ZERO.
Even though it was going to be nearly impossible with our schedules, Susan decided to amp up her hours so she could qualify for health insurance at work. It would leave us paying about half of what we were before, though some of that savings would be swallowed up by paying more in deductibles, especially impactful when it comes to the cost of prescriptions. Still we were going to be able to make it work, as long as we could drop one of her drugs, as it was going to cost us around 200 dollars a month more than before. We weren’t sure this latest drug was doing that much for her, so we decided to take her off it.
We slowly started to ween her off it. It didn’t take long, though, for us to figure out that this drug had been working. Maddie started behaving badly at home and at school. This is the kind of going broke versus trying to do what is best for your child decision that parents of children with special needs have to make all the time. We came up with the best solution we could by going to a generic that isn’t a time release capsule like the previous one she was on, but still works pretty well. I can see arguments for both sides on the government health care debate, but not having affordable health care for children and those who cannot take care of themselves is a disgrace. Working families shouldn’t have to go into bankruptcy just to keep a loved one healthy.
I have tried to make this site a place where people with special needs can be celebrated, but I also want to reflect the truth of our situation. Thanks for hanging in on this one with me. Happy Monday is less than 2 days away!