Do you want to know what treatment really costs?

It is seriously so ridiculous!  I think the current number for treatment of a person with autism for their life is somewhere around 3 million dollars.  3 MILLION!  And I am not even sure if that statistic is what it costs if people get the treatment they need or if that is the average expenditure that is actually happening.  I am certain it only includes "traditional" treatment.

I know a lot of kids, including ours, who get almost no treatment outside of school, not because they don't need it but, because it is too darn expensive!  Speech therapy, ABA, OT, GI's, Neurologists, Developmental Pediatricians are freakin expensive, even with insurance. We are talking in the 10's of thousands of dollars, with insurance.  The only kids I know that get all the treatment they need either have really rich parents or parents who qualify for public help for their kids because of their low income.  But, doesn't your insurance have an out of pocket maximum, you ask?  Yes, it is above $10,000 and it does not include co-payments!  So, the copayments are what puts the therapy out of reach.

If you don't have a kid with autism and are callous enough to say that it's not your problem....It will be when 1 in 50 kids grow up and a majority of them are unable to hold down a job on a regular basis because they did not get the help they needed when they were young.  Or maybe, you make enough money that you can go live in a gated community and pretend the rest of the world doesn't exist.

How does it feel to have a violent kid?

You know, I don't know that I can really describe this one.  Do any of you have the words?

A lot of kiddos with Autism will act out in violence during a meltdown or even just when they are frustrated?  It doesn't happen all the time and I know parents who end up with way more bruises than I do but, it is still scary.  When my son was younger, it was easier to contain him.  Now that he is getting bigger, he can do more damage.

Sometimes, when he acts out, I get really frustrated and angry with him, even if he is not in control.  Mostly though, it scares me.  What am I going to do when he is a teenager if he still cannot control his behavior when he is frustrated or overwhelmed?  Will I end up in the hospital?  What scares me more, is will he do damage to someone else and end up in jail?

My son is actually a very tenderhearted kid, though you wouldn't know it when he is frustrated.  He normally feels pretty badly after he does something violent.  He hurt my shoulder the other day and then a few minutes later went to get me some ice from the freezer.

Greener Pastures

I am big enough to admit it; I am a grass is greener person some of the time.  Not all of the time, but, it definitely hits me between the eyes more often than I would like. Even in the best of circumstances, we humans play the what if and if only game.  When life keeps throwing curve balls at you, it's more difficult to dodge those questions.

If a parent of a kids with special needs ever tells you that they have NEVER asked those what if questions they are lying to you.  Or, maybe they are lying to themselves.  We are scared to admit those doubts and questions out loud because you could think that we don't love our child unconditionally.  Or, perhaps we don't want to admit to ourselves that sometimes it does feel like a burden.  You know what.....admitting the truth doesn't mean you love your child any less. Superman is a fantasy and the special needs parent that has it all together is also a fantasy.

So what am I actually thinking when that green monster raises it ugly head?  You want the real truth?

• A parent says to you how nice it is that your kids doesn't have to wait 2 hours in line at an amusement park.  Of course, I am thinking that your kid can take the autism and I will joyfully wait in line all day long!  
• A celebrity talking about how much such and such a therapy helped their kid and wishing you had the money and time to give your kid all the help they need.
• A parent of any neuro-typical kid complaining about school, dating, sports teams, etc.while I stand there wishing those were my problems.  Sometimes it feels like listening to a really wealthy person complain that the engine on their yacht needs a repair.
• If only we had made less money like that other family at school.  Their child gets so much more help because they have a lower income than we do. While our son gets almost no help outside of school because we live in that in between space where we make too much to get help and not enough for to pay for therapy ourselves.
• It might be easier if my child's autism was more severe.  How could I ever think that?  Would I really ever want that - absolutely not!  But still,

• Children with more severe needs are eligible for more help.
• Children with more severe autism get diagnosed earlier and have early intervention.  I have seen children who had more severe problem than mine but got help earlier and now have better speech and social skills than my son.
• I know people who have children whose special needs are more severe and they get more support from their community. Seriously, I am not talking about attention yet, I know there are parents who seek that. For example, people set up fundraisers to help with their medical and related expenses. These kids are already having the state pay for their therapy and now the public pays for their gas and food as well.  What I really think is that it is so AWESOME!  I really, really don't begrudge that at all.  Anything that can reduce the stress of being a parent of a special child is great. It is just that when I get really frustrated that we can't pay for needed therapy, those thoughts creep in.
• When you have a child on the spectrum that is "high functioning" there is the possibility that with the right amount and type of therapy they could grow up to lead a somewhat typical life, whatever that means.  That seems like a lot of pressure on a parent. 

Now, I readily admit that some of these might seem absurd and I don't think this way much of the time.  I am certain that I have met many families who would be more than happy to trade circumstances with us.  I know that parents of non verbal children would give up all the help they receive to have one real conversation with their kid.  I also know that the problems and stresses on parents with typical kids are real and pressing. I am not diminishing their struggles.  Parenting comes with a lot of pressure regardless of your situation.  I am simply trying to be honest.  From my own experience and from talking to others, I know that it can be such a relief just to find that someone else out there has gone through what you are going through or has struggled with the same thoughts. It can go from, "I am such an ungrateful idiot for having that thought" to "Oh, what a relief, I'm not the only one that has ever thought such a thing before."

Special circumstances or not, I am certain that you have all struggled with grass is greener episodes in your life.  Is it healthy, not really.  Is it normal, yes.  Rather than trying to bury my feelings out of shame, it helps to own it, think about it, know it is not healthy and release it.  

What My Son Taught Me About Judging Others

One of the most important lessons we have learned through having a child on the spectrum is how to look at others who are struggling without judging them.  The more I understand neurology, the more I get how difficult it is when your neurology is damaged or not functioning correctly in some way.

I know many people (including myself) who said "I'd never let my child behave that way in public" before they had kids, then took it back soon after they became parents....unless they had an unusually easy child.  It is even more so when your child has a disability that causes them to behave in ways that are not necessarily socially acceptable.  Some of those behaviors are just considered unusual but, many can be disruptive or appear disrespectful.

Fundamentally, I believe that if we tell people that they are not responsible for their behavior (with a few exceptions for those who really can't) because of some type of neurological problem, then we are doing them and our cultural a disservice.  But, I also believe that some people are less able to make those choices.  Be they good behavior versus bad behavior or simply making others feel comfortable by fitting into some social norm at the appropriate time and not being disruptive.

Anyway, all that to say, the more I learn about how the brain works the more understanding I am of others.  I haven't changed the standards of "right and wrong" but, I do get why some people have a more difficult time making good choices.  

And for those who might be offended about equating Autism with making bad choices, in our house that is a big deal!  We have a son who is sometimes pretty violent.  At times, he has absolutely no control over it but, often he has enough to stop with consequences.  He needs those consequences and whatever other help he can get for that issue because, if it doesn't stop, he will end up in jail as an adult for hurting someone.

Losing Myself

I recently had a conversation with another mom who has an only child with autism.   She told me that she was feeling like she had somehow lost herself in the her role as a mom to a child with autism.  I could totally relate; as only someone who is walking the same road can.  We discussed that many mom's probably feel that to some extent but, it seems when you have a special needs child that the feeling is magnified.  I know some mom's fall right into the role of mom with ease like they were born for it.  I know some mom's wtih really "easy" children who can take their kids anywhere, get everything done and maintain their relationships with barely a blip.  But, for all mom's, their heart changes, their priorities change...there is now this little life that is dependent on us for it's survival and their future is linked to how we raise them.

I try to make my life about more than just autism but, as my son ages and his symptoms seem to intensify, I can't help but spend more of my time focusing on autism.  Someone once mentioned to my husband that my life could not be all about autism.  I was pretty irritated!  I guess that perception comes with having a disability that people cannot always see. My son looks like every other kids his age - he is anything but.  He lives in pain from sensory issues and he lives with pretty serious anxiety that only seems to get worse as he falls further behind his peers socially.  If my child had cancer, no one would say that my life could not be about cancer.  Of course I could research and find the best ways to help my child.  If my child had a terrible orthopedic injury to his leg, who would say that my life couldn't revolve around the surgery and physical therapy that would help him walk normally again.  Those issues would effect where our family could go, what activities we could participate in, how much time I had to spend on other activities. No one would bat an eye at that.  But, when your child has "high-functioning" autism, the world cannot readily see the struggle. Will I be able to take my child to the store without a meltdown?  Will I be able to go to this family activity without my child getting too overstimulated?  How much of our family time, energy and finances are taken up with therapy?

Parents of kids with autism often struggle with their own stress, anxiety and depression. They struggle to take care of themselves and help their kids.  It is a difficult balance.  They are often tired and feel isolated.  They struggle with the guilt that comes when they think they are not doing enough for their children or when they are unable to meet their childs' needs.  All those emotions try to pull you under as you struggle to stay far enough above the water so you can parent your child.  Sometimes being an autism mom does define me.  Much of the time, I feel like I have lost myself in the daily life of parenting a child with autism.  There are times that I can push the extra responsibilities of parenting a child with autism to background for a time but, I know they are there, will always be there!

P.S. Acknowledging the extra stress and work that an autism diagnosis brings to your family does not in anyway diminish the value of the child, mean that you love them any less, think they are any less awesome or view the child as a burden!  Don't go there!