Invited to a Party

Over the weekend, we went to a birthday party for one of Zach's classmates.  We live in a community that has a 9 month school year, so they are on summer vacation, and Zach has been very nostalgic, and misses his first grade class and teacher.  So when the opportunity came up to go to a party for his friend, McKenzie, I agreed.  This is the girl whom he was constantly calling his 'girlfriend' and though I don't think he fully grasps what that means, I know he likes being around her and considers her a friend. 
Thankfully, the party was at one of my kids favorite parks, as I needed to bring Israel along as well, because my husband was out of town.  Israel is two grades level above everyone else at the party, and spent most of the time running around the playground.  It was really informal, which was perfect for my kids, not having to sit and pay attention to rules/games was nice.  While I was talking with the host mom and another mom, I mentioned how nice it was to be invited, that we don't really get invited to many parties anymore.  I was assuming it is because my kids are autistic and Zach in particular can be a little abrasive/awkward around others, and neurotypical kids sometimes don't know how to take him.  But another parent chimed in, "There aren't a lot of parents doing them anymore."  I have to admit, it made me feel better. 
And then I thought about my own childhood, and how it made me feel to never have a party.  My parents were so poor, and we never had the extra money for something as frivolous as a party.  Especially since my birthday falls less than a week after Christmas.  My sister often had a combined party with our cousin, thrown/funded by my aunt, and it made me fiercely jealous when I was a kid.  We always got gifts, but it was the party that I wanted, to have my friends around, fussing over me.  Now that I am an adult, I can see both sides, it is a little silly to indulge in such things, but if it makes my kids feel good, I don't see the harm.  The sad part about the party this weekend was that from a class of 20 students invited, only 4 classmates showed up to her party.  The host mom was running around trying to make everyone happy, serving, setting up games, etc.  But in the end, the birthday girl seemed happy and my kids had a blast.  Autistic or not, parties make kids happy.  And the one we went to was pretty uncomplicated, and the kids didn't interact too terribly much due to the playground equipment, but for my family, my kids were included.  And that feels amazing!

That's Zach on the far left, and Israel just to the right of him

Sleepless in Green Bay

Sleep is so elusive these days.  My older son, Israel, is having so much trouble getting to bed at night.  If it's not being scared of spiders, it is an odd noise.  His ears seem to be hyper-sensitive to the point that he can hear the motors of electronic devices that I cannot.  It drives him insane and keeps him from sleep, despite having a turbo fan blasting white noise that can be heard throughout the entire house.  Friday night, he had a Bob Marley drink, Mellow Mood, and it was so effective, that he fell asleep on the couch well before his bedtime, and woke some thirteen hours later.  Then the weekend was normal, taking anywhere from about a half to full hour for him to drift off to sleep.  I consider those the "easy" days.  Last night was one of the "bad" nights. 
It begins when I announce it is time for bed.  He immediately protests, whines, sometimes even throws himself to the floor.  This is where I know I am in for a battle.  All yesterday he spent instigating/irritating his brother, who is younger but much stronger than him.  So right before bedtime, when I found Israel running away with his brother's treasured toy, I knew it was going to be a long, drawn-out bedtime.  I dream of a day when we can afford a bigger living space so my kids can have their own rooms.  Zach usually falls asleep within 5 minutes of hitting the pillow, and sleeps really deep, unless Israel is bothering him.  I don't know what Israel is getting out of irritating his brother.  I have tried to ask him, and he says he doesn't know.  I drill him until he's irritated with the interrogation.  Is it for motor stimulation?  Is it in hopes that he'll get hit (ie pressure)?  Is it for attention?  He doesn't know.  I have made the mistake, while under the influence of desperation and sleep deprivation, to threaten to take him to the doctor to get him medication that will allow him to settle his body at night.  But I'm not sure I'm ready to do that. 
So I began bedtime by trying to have Israel lay down with me alone.  He rarely ever sleeps in his bed since we got bunkbeds.  He begged for bunkbeds for a year before I finally gave in.  And his reason for not wanting to sleep in his bed changes from day to day.  One night its because he just wants to be close to me, another because he's afraid of spiders.  I have been trying to head off problems before they start.  We put a plan in place where Israel is allowed to lay next to me on the floor until Zach falls asleep, and then I come up to his tiny bed and lay with him until he falls asleep.  Some nights this works beautifully, despite having to contort my body to fit in bed with my nearly-nine year old.  But last night, Israel was very upset that he was in his room first, and alone with me, and the crying jag began right out of the gate.  I always try to talk to him about what is going on first, and then about other things to distract him, but on nights like last night, nothing works.  It seems that once he begins crying, he can't stop.  And I wouldn't call it crying as much as screaming/howling with very few tears.  That we haven't had the police called on us for disturbing the peace or suspected child abuse is a wonder!  For some reason Zach came to me to ask for a favor while trying to contend with Israel.  Despite my husband being available, Zach still prefers me to help him, and I got up to help him and then Israel followed.  That led to him asking for food, which drew-out bedtime even longer.  By the time Zach got into bed and dozed off, it was nearly an hour past their bedtime, and it was nearly my own bedtime.  I eased Israel into his bed, and he began to settle after another half hour.  But just as he was drifting off, he jolted awake, panic-stricken that there might be a wasp near his ear, because he heard a buzzing sound.  Was he dreaming?  Who can tell.  But I was already losing sleep myself, and my stress level was so elevated that I caved in and let him sleep in the living room with my husband.  I don't like to let him do that because my husband doesn't usually go to bed until after 11pm, but at the time it was nearly 10:30 and Israel wasn't sleeping anyway.  So I dumped him off on my husband, who's been gone a lot this weekend due to work, and went to bed.  Israel came in my room at midnight to tell me that my husband wouldn't let him sleep in his bed with him.  So after a little while of begging him to try again, I finally had to get up and fix him a comfier bed of bean bags and cushions on the living room floor, so he could finally get to sleep.  I didn't hear from him again until this morning, thank goodness.  But that is what happens at least a few times a month.  He didn't get to bed until after midnight.  He didn't have any caffeine yesterday, had plenty of stimulation and fresh air, and very little sugar.  But one thing I did think about last night is, this usually seems to happen when I'm left to handle him by myself.  Lightbulb!  It's just a hunch, but I'm thinking he is finding his way to get attention/closeness from my husband.  Because usually if it goes on too long, and I am at my wit's end, he eventually ends up sleeping with my husband.  They have always had a really close bond. 
We need more work on bedtime, but I am starting to consider natural sleep aides.  Has anyone tried anything and had success?  Advice would be appreciated!! 

Sleep Issues and ADHD

I am having so much trouble getting Israel to go to bed nicely, and it is causing such a scene at bedtime that I am suprised we have not been reported for waking up the neighbors.  It starts with him whining when I tell him it's time for bed.  That is not unusual.  Then the "naughty voice" usually makes an appearance.  This is the voice that usually indicates the need for stimulous, or they like to call it "motor".  He is very smart, and I am not totally convinced that he isn't simply trying to delay bedtime.  Zach can hit his pillow and be asleep mere minutes later.  Israel has been taking a solid hour lately, complete with wicked, unpredictable melt-downs.  I don't know if it is stimulous-related or attention-related, as he rarely tells me what is wrong, why he can't settle down, and by the time he starts wailing, I can't get a peep out of him.  I am at my wits end.  My parenting skills have suffered from the extreme stress of the situation, and my thoughts keep going back to medication.  He most definitely has difficulty controlling his emotions, this is common for kids on the spectrum, and for ADHD, both show understimulation of the prefrontal cortex of the brain, which is the part that regulates emotions.  But, ADHD meds are stimulants, so I am worried if I put him on that, he may have an even harder time getting to bed.  There doesn't seem to be an easy answer, so the battle continues.  I will try to get more information from him so we can hopefully head it off before it starts. 
I am worried that Zach is on the ADHD scale too, but with him it is in the form of impulsivity.  He will just be playing with something and then stop and throw it across the room.  And when he is bored, his body gets out of control, he jumps up and down with no reguard to what is nearby, often knocking things off shelves in stores, or completely falling over.  I'm afraid he is going to hurt himself one day.  And he does hurt others, sometimes with no apparent reason, just standing next to someone and decides to kick them or push them, or in the case of his brother, jump on him and wrestle him to the ground.  When asked, Zach is pretty good at telling me when he needs pressure or to jump on the bed, but sometimes the unpredictable things he does are unexplainable.  That is what leads me to believe he also has an underactive prefrontal cortex that he is trying to stimulate. 
It is frightening to see that some of these symptoms get worse in adolescence, as we are barrelling toward it in a hurry.  I don't want them to feel miserable and have to resort to such drastic ways of having their needs met, but medicating them scares me.  More research is needed on my part, and finding a family doctor I can trust. 
In my Human Development class we talk about yelling and spanking alot and it makes me think about my parenting skills, and how I am simply following my own mother's parenting style most of the time.  That is not good, considering the struggles my mother faced.  Her situation was much different than mine, so why should my parenting style follow hers?  I was reminded that yelling and spanking only addresses what not to do, and doesn't teach them what to do.  I am constantly preaching that hurting others is not ok, and then when they do something bad enough, or when I am at the end of my rope stresswise, I spank them.  So I see a lot of areas where I need some work.  Right now, I am looking forward to this semseter of college being done next week, so I can give them a lot more attention, and I'm looking forward to their summer break so we can go off and have fun when and where ever we want.

A Chapter is not Enough

In this, my first semester back in college, I have finally reached the Autism chapter of my Abnormal Child Psychology class.  I was really disappointed in how the text book started the chapter with an insinuation that autistic children are subhuman, by saying many of the traits that make us human are the ones that are deficient in people on the spectrum.  Yes, there are deficiencies in social skills and even in communication, but is that all that really makes us human?  And what are we measuring this by?  Many non-verbals can communicate, just not in the way society is demanding of them.  If you don't think so, research Carly Fleischmann's story.  And what are we saying about deaf people then?  I understand the point that was being made, but I think in this day and age, with so many being diagnosed worldwide, we have a responsibility to be more careful about how we address people on the spectrum.  They are not deaf and they are not mentally retarded.  They  are fully able to  comprehend things that are said and have extraordinary recall.  They just cannot use expressive language as freely as others, and even may take a little longer to express themselves when/if they do.  It doesn't mean they don't understand what is being said about them. 
In my class last night, as we were breezing straight through the topic, there were so many times I wanted to comment, to add to the lecture my own personal experiences and argue some things being taught, but the professor is against us sharing anything too personal and I could tell she wanted to get through it quickly so we could leave early.  We are watching the movie Temple Grandin, which I think is a phenomenal thing to show and I applaud her wisdom in that decision. 
But when the chapter is done, that is all we have for Autism.  In this great University of Wisconsin system, which has been reguarded so highly for it's academic excellence, I feel like there is a huge lack of classes in autism.  With 1 in 88 folks on the spectrum already, courses should be available at every college in the country, we shouldn't have to rearrange our whole lives to find a college that offers courses in it.  I know that it takes time to implement such programs, and that it will happen in time.  We certainly want someone teaching the course that has worked extensively with autistic children, and not just occassionally encountered an autistic child in the course of treating the masses of depressed people.  Not that I'm knocking anyone, every kind of therapy is vital, but for me, I want to see more courses offered in autism, and eventually, I'd like to see a degree in autism treatment being offered.  Yes it is a branch of psychology, yes it is a branch of human development, and even social work, occupational therapy and speech therapy if we want to get technical.  But within those broad courses, there is very little that applies to autism, and to those who want to chose a career in helping spectrum people.  So there is one area I hope comes along in my lifetime.  In the meantime, I will take my overgeneralized psychology courses on marriage issues, drugs, aging, etc that have very little to do with a problem that is quickly outgrowing many others combined, and not just in our country, but worldwide.  That 1 in 88 is the American statistic, but it is 1 in 150 worldwide.  And knowing that it's going to be a fair while before we get answers as to the how and why's, we had better have a competent fleet of people equipped to help these people, as they become a part of the meshwork that makes up our global demographic.  I may rant, but I also have hope.  I started this to be part of the change of things that I can see lacking, and I'm far from done.

1 in 88

By now most people have heard the CDC's newest statistics that 1 in 88 kids in America is on the Autism spectrum.  It now qualifies to be identified as an epidemic.  That means 1 in every 54 boys and 1 in 252 girls are on the spectrum.  Some of the rise is due to professionals being able to diagnose it more easily, and with knowledge becoming more widely available, parents are now starting to recognize the symptoms of Autism on their own, things that might have otherwise been dismissed had they not heard of Autism or known someone on the spectrum.  But while awareness grows, these new numbers will frighten a lot of folks who don't look deeper.
When each of my sons was first diagnosed, I felt devistated.  My kid is diseased, I thought, he'll never be "normal".  I spent a great deal of time and energy on apathy, and dreading the future outcome of my sons' lives.  But as each has grown, they have blossomed.  They have distinct personalities, fraught with quirks, brilliant observations, creativity, and pure unfilter love.  Their capacity for deceit is low and their capacity for love is sky-high.  They don't always conform to societal or gender norms, and I think that is brilliant!  Society is wrong in so many ways, and for them to be rebels against some of the things that confine us is a freedom most of us will never have the luxury of having.  Not that they're aware of it.  Yet.
Very few days pass without me being gratful that my kids are verbal (they still have communication issues, despite), and that they can adapt/adjust to the changes their daily lives lead them through.  They have remarkable, inspiring individuals helping them through the tough times, and for all the challenges they have to face, they are so strong and resilliant.  I know a lot of people have a much worse situation than we do, and I feel blessed every day that we have the tools and the strength to handle whatever life throws at us.  For me, Autism has touched me so profoundly that it has given me direction in my own life, and given me purpose.  But it has touched me in the sweet, wet kisses that taste like cherry Chapstick and the gentle sigh that comes with pressure in just the right spot.  Everyone has something that makes them unique.  For me, Autism is just that, a little something different that makes a person extra special, and ultimately, extraordinary.

A Response

I have taken some time away from this blog, due to a comment by on my last entry.  I wanted to reply to the comment, but feel that I need an entire blog to do it.
First of all, despite the comment's negative air, I feel it is a good thing that we have this open forum in which to share our thoughts and feelings about the disorder.  There will always be differing opinions on how to raise any child, and children with special needs are no exception.  There is no wrong or right way, just what is right for each individual family.
Let me first say that I am not against people trying to raise awareness of Autism and how Autistic people of all ages should be treated.  I am all for research.  But I think there is a huge disconnect between displaying a ribbon, and being able to educate people. I wore an Autism pin on my work uniform and lapel for a year, felt like I was doing my part to raise awareness, was certain several people each day would ask about it, giving me an opportunity to educate them.  In all honesty, the only people who mentioned it were people who already knew what the pin symbolized.  And I can relate.  I see bumper stickers all the time supporting "this" and "that" cause, and I do not have any desire to rush home and jump on the internet to see what it is all about.  It just isn't in my nature or my tight schedule.  In my (albeit limited) experience, I think that those who are interested or know someone on the spectrum, will seek out information, of which there is a wealth, and will take from it what they will.  I do not see Autism as a disease or a horrible tragedy, I think my kids are brilliant and loving, and, like any parent, think they are beautiful exactly the way they are. 
I used to speak for them all the time.  When someone would try to engage them in conversation, I would promptly step in and announce, "Oh, they're Autistic, they probably won't answer you."  I thought I was being helpful or letting them off the hook so people would understand why they weren't answering.  But now I see that I wasn't doing that to make them more comfortable, I was doing that because I felt uncomfortable that they weren't answering.  When I read the aforementioned book, it opened my eyes to what I was doing to them.  We wouldn't advertise other conditions in the same manner would we?  If it were diabetes instead, would I introduce them as my sons with diabetes?  Doubtful.  My kids, being older, are aware that they are not like others, that they sometimes don't have the words to express what they don't like, that they get kicked out of daycare after daycare because they don't behave like everyone else.  They don't need a neon sign, or their mother advertising what they least like about themselves.  It comes down to respect.  Everyone has something about themself they don't want others to know, for my kids they have both been able to verbalize that they don't want me to tell people they are Autistic.  It isn't fair to air out someone else's laundry, and especially kids, who already feel they have so little say in their life, it can be exceptionally scarring.
If slapping a bumper sticker on my car truly gave me the opportunity to educate people, I could see the merit in it, but for me, it comes at the expense of my kids' feelings, and at this point, would violate their trust.  And I truly do feel as though it opens it up for judgement, not in a malicious way, but in a knee-jerk manner, the same way someone reacts to seeing someone wearing a turban, or seeing a car with a gay rights bumper sticker.  It's not something most people will admit to, or are proud of, but there is a little bit of judgement in all of us.
As far as the parents of Autistic children being impossible to please, that may be so.  All parents strive to have the best for their kids, whether it is healthier lunch options, no bullying on the playground, better books to choose from, or in-class aides that will help all children reach their potential. I agree, there is a fine, often contradicting line between recieving these (often vital) services, and having those services single them out as being different, and it is something each parent needs to decide what is right for their child.  I have a friend whose son is on the spectrum, and has chosen not to have any special treatment in the school system; rather chosing to integrate him in with neurotypical children.  She has her challenges, but that seems to be what works best for her.   I am very fortunate that my kids receive services at school that have allowed them to keep up with the rest of their class.  Honestly, what I want for my kids is to be happy.  They are very aware when they can't do something like the others can; our job as parents is to give them the coping skills to handle tough situations and think of another solution so that, though they will always be different, they can handle it.  I am very satisfied with the services they get at school, it is after school where I am appaled at the lack of daycare facilities/providers that offer care for children with special needs.  That being said, I feel my energy would be better spent learning all I can about Autism so that I may go into these facilities and train the staff how to handle kids on the spectrum, and that is a decision I have made; that is my contribution to the cause.  With one in every 58 boys born on the spectrum, these consultative/training services are more vital every day.  And if it helps just one family to navigate their course a little easier, then I will have made a worthwhile contribution.  It may take me years to reach the point of being able to live out that dream, but to me it feels very necessary. 
It may be decades before researchers find what causes Autism, and decades more to figure out how to "treat" or avoid it, but I don't see it as a negative thing.  My kids have a lot to offer the world, as does everyone on the spectrum, and I wouldn't change them for the world.  I believe our creator does not make mistakes.
There will always be challenges in raising children, there will always be differences of opinion, and ideas and information will shift and change as we learn.  The best we can do is treat people with respect, even if we have differing opinions.  I don't feel that my opinion is always right, as it is often based on emotion and a little bit of logic, I am just as any parent, trying to give my kids the best I have to offer.  Respect, dignity and trust should be part of the package between parents and their children.  For me, that means not wearing a ribbon.  It's not an attack, it's just personal.  If we never give our kids any say, especially on something that effects them on such an emotional level, they will never be empowered or able to advocate for themselves.
As I have always believed, we try, until we find the way that is right.

Why I Don't Display the Autism Ribbon

I am on Facebook, as is nearly everyone, and I use it to keep up with the lives of my friends.  Lately there have been a lot of Autism things coming forth, and I have been invited to click "this" for autism, or proudly display "that" for autism, but I have not chosen to do so.  It is, in part, due to a book I've recently read called "Empowered Autism Parenting: Celebrating and Defending your Child's Place in the World" by William Stillman, a brilliant author, autism advocate, and person with Asperger's.  I cannot recommend this book enough to everyone, whether or not they live with someone with autism.
Stillman tells us that when we proudly display the puzzle piece ribbon on our bumper, or advertise it elsewhere, that is setting the environment for people to segregate us and our children.  People see that ribbon on our bumper and think, "Oh, they're one of those families"  or, Oh, poor things, what saints they are to care for those diseased children.  And when your children emerge from the vehicle, the judgements are already being passed upon them.  In that manner, you aren't giving your child the chance to be considered "normal", you are already telling others what to think of them, and how to treat them.  And the scarey thing is, even with the rate babies are being born with autism, there are still so many people who don't understand what autism is.  When I tell someone that my child is autistic, I think they expect to catch him drooling in a corner, rocking himself and talking gibberish. 
The book also talks about those parents who print/hand out cards or announce that their child is autistic when they are reacting to the stimuli in crowded stores.  The person you hand that card to, as your child is tantruming or self-soothing in a way that may not be considered "normal" social behavior, is now thinking, this is what autism looks like.  It belittles your child, who is merely trying to communicate his/her level of discomfort with the sensory overstimulation.
It also taught me that my child's "behaviors" should not be dismissed as that, but as communication.  Most autistic children have needs that they can't put into words, so they use action to try and communicate.  This really hit home with me.  My older son is high functioning, and is quite bright.  In first grade, he was testing at two grade levels ahead in reading and math, and eight grade levels ahead in visual spatial relationships (common for kids on the spectrum).  He is very bright, and has always been very verbal, so I have always assumed that he knew how to express his needs/wants/discomforts, but now I see things so much clearer.  He has an appointment to assess him for ADHD next month, but now I am wondering if his "disruptive behaviors" aren't really just his attempt to communicate something that his brain/mouth won't let out.  It will be interesting to see what the outcome is.  Since reading the book, our relationship has been much improved, and I have appologized for doing things wrong in the past, and asked him to write down anything I've done that bothered/bothers him so that I can work to help him instead of bother him.
As for my younger son, I have begun to show him more respect by asking him if it's OK to touch him before I do it, and to my surprise, even though he usually never complains about my touch, a lot of times he says no when I ask him if it's OK to rub his back or arm, which I have been doing without permission nearly every time he is near enough to touch.  There are places he likes to be touched/kissed and I am working on just touching him there, but only with permission.  It is about respecting them, and as Stillman puts it, assuming intelligence.  Our children want what everyone else wants, to be treated with respect and dignity.  And that is why I do not proudly display the autism ribbon.