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!

A Moving Poem for Parents

~ A HUNDRED TEARS ~

A hundred times I told him
a hundred times and more,
"Don't hit the dog, don't run away
don't throw that on the floor!"

All morning he was tireless
he never stopped to think
he broke my lamp, he spilled his milk
dumped the kitten in the sink.

He ran around the house all day
without a stitch of clothes
he flapped his hands and sang and cried
and fell and bumped his nose.

At dinner came the moment
when I'd simply had enough
he refused to eat his dinner
and that's when I got tough.

I sent him off to bed at once
despite his tearful pleas . . .
I let him cry himself to sleep
it brought me to my knees.

When silence fell upon his room
I slowly crept inside,
and gazing on my little son
I lost my foolish pride.

A hundred tears I wept right then
a hundred tears and more
for this little child who spilled his milk
on my nice bright shiny floor.

Who am I to scold my son
for things he cannot know?
he looks to me for patience
to help him learn and grow.

A hundred prayers I said that night
a hundred prayers and more
Help me Father, teach my child
this child that I adore.

And as I left his room that night
I kissed his tears away
and promised that tomorrow
would be a better day.

~By Sally Meyer

God gives special kids to special people and other religious platitudes that don't help!

Look...I am a Christian but, some of those platitudes that you hear when you have a child with special needs don't really help.  I'm not angry at you for using them, I know your heart is in the right place. Let me tell you what I think about a couple of them.

 "God only gives special kids to special people." I am not anymore special than anyone else.  I know you think that I am some sort of super hero for dealing with my kid somedays but, the reality is that I am often tired, stressed out and on the verge of desperation.  On a good day, I have the sense to take that desperation to God.  On a bad day, I wallow in it and try to take a nap.  I try to keep away the guilt for not doing enough for my son and realize that God, though I don't understand Him sometimes, knows what He is doing. I "know" that God works out everything, good or bad, for my good. I wish I believed it every day.

"God doesn't give you more than you can handle."  Seriously?!? Look, I know it sounds great but, it isn't true. What I believe is that God doesn't give us more than we can handle with His help and His help is pretty powerful.  If you read the Bible, what we see are people constantly being put in situations that they can't handle.

"God is in control."  Ok, so I do need to hear this one but, I don't really think God gave my son autism.  Could God have chosen to prevent it? Yes but, I also think we live in a world of natural consequences and it rains on the just and unjust.  We have autism on one side of the family and auto immune problems on the other side.  That is likely the reason he has it.

Why are communities so divided?

IT'S A DISTRACTION THAT WILL MAKE THE ENTIRE COMMUNITY LESS EFFECTIVE!

Sorry for the shouting but, this has come up a lot recently.  Communities loose their effectiveness when they allow differences in perspective to overshadow the common struggle or goal.

I don't care if you call my child autistic. I don't care if you call him a child with autism. And, I don't care if you have a preference for yourself or your family member because I would be more than happy to say it however makes you feel the most comfortable. I'll even listen attentively to why you prefer it. Don't ask me to feel the same way about it.  Don't make it an issue that will prevent us from going out and fighting to help people with Autism.

Attacking each other over views on therapies or vaccine injury is equally ridiculous.  Look, I know there are strong feelings on some of those issues but, calling someone a quack isn't helpful. What really matters is that there are people with children and they love their kids and are trying to help their kids.  If we could see that first, the love, the dedication, I think it would help diffuse the attacks.  I am all for debate, even heated debate.  Debate is helpful but, division is not!

And to the adults with Autism who attack the parents who are trying to help their kids, when I read your comments on blogs, it makes me want to scream sometimes.  (Let me be clear that I am only speaking to the select few out there who spew venom at the world. I know at least 5 adults with autism and none of them speak that way about others.) Look, I know that you feel like us parents, who are trying to help our children, are attacking you but, we are not.  We are glad to see adults with Autism that are able to dive into the discussion.  As our kids get older, your perspectives are going to be invaluable to us.  We need you!  But......we have children who are in pain from sensory issues.  Why would we not want to help relieve their pain?  We have children who have a difficult if not impossible time carrying on a conversation with someone their own age.  It makes it difficult to have friends.  Why wouldn't I want to help my child have friends?  I want them to be able to see something from someone else's perspective so they can reach out and have deep and meaningful relationships because that is what has been the most important part of my life.  Why wouldn't I want that for them? We have children with anxiety problems that effect their ability to do just about anything. Why wouldn't we address that?  And, sometimes selfishly, we have dreams for our kids that we feel have been stolen by Autism.  We want to them to be able to play a sport, enjoy school activities, find a job they like or be a stay at home parent, give us grandchildren, etc.  Those aren't awful dreams.  We love our kids and are willing to adjust our dreams.  Just because we acknowledge that giving those dreams up is hard and causes some grief doesn't mean we think our kids are less.

What Do You Do About Anxiety?

Do you remember being afraid of the dark as a kid?  It didn't matter that when the lights went on, there were no monsters in your room, as soon as those lights were out, the fear returned.

Many kids with Autism have problems with generalized anxiety.  I wish it was something that we could reason through with him.  You really cannot!  It doesn't matter if the fear is not reasonable, the feelings do not change.  It doesn't even matter if the person experiencing the fear knows the reasons that they need not be afraid, the feelings do not change.

We are experiencing a pretty extreme amount of separation anxiety in our home.  Our son cannot stand it when anyone leaves him.  At school he is hanging on me and has to be physically restrained when I leave so he doesn't follow me.  He calms down when I leave and enjoys school.  It is just the moment of separation that seems to terrify him.  He is in third grade so it isn't just like picking up a toddler.  I expect it will get better as the year progresses but, it is pretty stressful right now.

Any ideas?

Don't You Know This Won't Be Cute Forever?!?

My son is still at that adorable age when his obsessions are entertaining to those around him.  I am always hearing about how cute, fun and smart he is.  At this age, he is those things.

What people don't seem to understand is that many of those behaviors are a manifestation of his autism.  His tendency to obsess over information and share it with everyone he knows might be adorable now, but not when he is 35.  He may be forgiven for the constant interruptions at this age but, when he is always interrupting as an adult, it will be considered rude.  He is forgiven now when he cannot stop talking but, that won't work on the job.

Rarely, it is easy to forget his struggles.  He has friends that do adapt to his social struggles and play with him.  When they are playing well together, he almost seems just like the rest of them.  He's not. All I have to do is watch for a few minutes to see it.

Don't stop saying that my son is cute and smart.  He enjoys it.  But, please understand that some of those cute things that we all, including me, enjoy in him now will make his life as an adult more difficult.  Our family knows adults with autism who share some of my son's issues and I am aware of their struggles.  It breaks my heart to think of him struggling in that way.

On Not Assuming

Roses are red

Violets are blue

I assume much 

And so do You!

I thought I wasn't the type of person that assumed a lot about other people but, my son sure taught me a lesson on that one.  I certainly assumed a lot about him...I could probably write a book about it.  Perhaps in the future I will write other posts about it but, for today, I am just going to write about how we assume what someone is thinking.  We often look at how someone acts or what they are saying as a guage.  If someone is screaming at another person they are probably angry, though some get quiet when they are angry.

When it comes to autism those signals are sometimes really messed up.  I recently talked to someone who knew a child with non verbal autism and when he began to learn the rapid prompting method (it is a way to help people communicate) they found he had taught himself to read and do math.  He learned this while sitting in the kitchen as his sister did her homework.  The parents had no idea all that was going on inside his head.  Oh, and don't assume because some kids do this, that they all can.  There are kids whose receptive language skills remain that of a toddler.

Sometimes it appears as if people with "high-functioning" autism have no remorse at all when they do something wrong.  I used to assume this about my son.  I have found that it is not true at all.  For years he showed no empathy, no remorse, even laughing when he broke something or hit someone.  It turns out that he will often laugh when he is nervous or feels bad.  All those years that I felt so frustrated and hopeless at his behavior and he felt bad all along.

I still get angry when I shouldn't; assuming that he has control over certain behaviors that he does not.  I often feel guilty for my frustrations.  It is so confusing sometimes.  When do I give consequences and when do I not?  How do I know when I am just punishing him for something out of his control?  What is he getting away with that is in his control when I back off the consequences?

The point is - we shouldn't make assumptions about other people!  With 1 in 50 diagnosed with autism, chances are that you run into at least one person on the spectrum on a regular basis.  Don't assume, even when you think their behavior, their speech or lack of speech is giving you a clear indication of their thoughts.  You and I could be completely wrong. 

About This Blog

My name is, oh wait, I decided to keep this blog anonymous. 

Why would I do that, you ask? First, for the sake of my son. I am not ashamed of his autism but, he is too young to give me permission to publicly share his life with the world.  I'm not judging those of you who do.  Having a face to go with the stories helps make them feel real and I do post about his autism on my regular facebook page.  I just felt like this should be separate somehow. Second, I know myself. Knowing that you knew who I was could effect what I write.  I want to free to be completely honest and free to write anything. Third, I don't want to have to defend what I write or answer questions in my everyday real life interactions about my posts.  I want to keep this part of it on the internet.

So who is my son? He is in elementary school, an only child and a real cutie!  He is autistic and was diagnosed with PDD-NOS before the recent DSM change. He is verbal and mainstreamed with accommodations. He is bright, sweet and fun....he is also obsessive, exhausting, anxious and sometimes violent.

A few years ago, a friend thought it would be a good idea for me to write about what it is like to raise a child on the autism spectrum.  I thought about it for a while, then decided against it.  I had come to realize that no one can really understand what it is like unless you are living it.  As I aged, I began to see that until you walk in someone's shoes, you can't ever completely get where they are coming from. That doesn't mean that we shouldn't try to understand or show empathy and compassion.  It just means that I know your attempts to understand will fall short if you haven't lived it.  Fall short?  That sounds bad but I didn't mean it that way. All attempts to understand my child are appreciated and well received. Just because you can't completely get all of it, doesn't mean that you can't learn some of it.

So, why write anything at all?  I think it will be therapeutic, not only for me, but for other parents who have similar experiences.  I know when I talk to another parent going through the same issues, it really helps me.  Maybe I can help someone else.  I also think that if you are reading this because you know someone or have family on the spectrum, it could help you be a better support system.  

I encourage discussion in the comments section of any post.  Please be respectful and kind to each other.  You may not agree with all of my posts or with others comments but, try to disagree with grace.