Part of Parenting; Forgiving Yourself for Mistakes You Will Make

Recently I have been contemplating homeschooling my son with autism.  There are many things that would be better about my life were I to do that, and even more things would be better for him.  By the end of the summer hes stable and we have stopped being at war about everything.  He almost seems ok.  Then school starts and everything is terrible, I feel like he is devolving, reeling.  By the time he levels out there is a break and everything falls apart again.   I have even been directed by the psychologist that he sees says that the stability of being home would beefit him as long as he was having social interactions.  I am only concerned that I personally am not up to the task of spending that much time with him.

Recently I had a revelation regarding this situation.  The challenges and the over all benefit of this idea are great, and I think on a day to day basis the sense that I cant do it, or that its the best thing I have ever done will battle it out.  What follows is not an example of my best parenting, and I hope that you can handle that.  We screw up, its pretty much what being a parent is, the key is that I owned my screw up, I admitted he wasn't crazy and I still held to the expectations I had established. So heres what happened  

Its Friday afternoon and I am crying on the couch because I just totally lost control with my kid.  I sprayed with a squirt bottle. because he has been suspended from school, he has a messy room and he went to sleep instead of cleaning or doing his school work. I had just spoken to the school and confirmed he couldn't go to an event that he helped plan because he had been suspended for hitting someone. I was heartbroken for him and crying and I went into his room to tell him and he was asleep.  It was like bombs were going off in my heart.  I am arguing with the school for this kid who just wants to nap and not do any of his work.  I initially interpreted it as a personal affront.  That sense of loss and sadness just blew up.  Unfortunately the 9 year old was the recipient.

This digressed into a nasty rage filled fight. Where he asserts  I obviously dont love him and I retort that he obviously was never planning on listening to my instructions. Then I was the meanest person that ever lived, and I cant imaging following through with this online school hes waitlisted for because he wont ever do anything but sleep all day.  In the midst of that I realized I was getting caught up.  I was emotional. In that moment I looked across the room and saw his audiobook that was blaring.  I stopped. I wrote a list of exactly what he needed to do and told him that if he was half way done in an hour he could have the audiobook back. Then, I walked away, I established his want, and it was up to him to fulfill that want.

It took about 10 minutes, and he came out and got a snack, then in another 10 minutes he came out and said, "I am going to do my homework first because I want to read the book.  Then I will clean my room"  my response "are you apologizing?"  he confirmed that this was an apology and I apologized as well. We hugged and he began working through his list.  Then my friend offered to bring a video game over so I offered that and the rest of the day was pretty smooth.  I  have to recognize that I created that situation.  I am the adult, I know him and I can fairly readily predict how things might work out in a given situation.

Sooo...why am I not expecting the school to do that as well?  I mean he made it through 3 days of a substitute and then had one incident in a busy lunch room.  As a his mom I want to high 5 him and tell him he rocked those unexpected circumstances and yet I am left to also not be able to dismiss his behavior as it got him suspended.  But then when they say that he ran away from teachers 5 times this week.  To which I think still progress hes not cussing.  He has openly told teachers "F-you" and said he would cut their heads off.  He ran away 5 times as opposed to getting so frustrated with them he uses obscenities but no one notices because he ran away and thats not safe.  Anyhow I digress, thats not actually my point. Still so frustrating.  My point is that maybe I am capable of both.  I can weather the storms and help him have less of them.

There were a number of things I forgot as a parent.  I forgot to center myself before I went to speak with him in the first place, I forgot to go into that room with a plan, and I forgot to let go.  I was never going to get him to clean his room or do his school work by the force of my will, but rather the force of his own will and his own wants. All of this is forgivable, its essentially the crux of parenting, always being on a tight rope over a really excited crowd.  I could have easily just been mad that he wasn't listening and spent my whole day fighting with him and never made any progress, I was willing to shift gears.

A major take away form this is that where the school gives up or exacerbates his fragile emotional stability,  I am able to help him recover namely by acknowledging my own failings..  My child is left to feel unheard and rejected in school, and while they insist its just school policy none of the other students seem to be disciplined. I never hear about other students being suspended, and I feel like I can do better than them.  This may be my own personal act of hubris, but I am diving in. I am going to write a curriculum (which I am capable of doing) and I am going to homeschool my kid while we wait for him to get into online school.

Sidenote.  Please comment and email if you have any suggestions on home schooling I am totally open.

kimmymidnight@gmail.com

Pants Are Overrated!

I am so psyched for school to start again !! School breaks always start off as a much needed reprieve from waking up in the morning and diving right into battle, they quickly devolve  from there. Tomorrow my kids go back to school and there is a combination of dread over the early morning grind and excitement thinking of the quiet house I will have for writing, cleaning and things staying clean, not wearing pants... yes that is a perk to the kids not being home. 

So what will my day look like?

First off in the morning we will start off in a flurry of conflict.  

"Get dressed", "take your lunch", "again, you need to wear pants", "turn off the TV, you're still not wearing pants."  You get the point, my morning is going to be unpleasant and without food, or coffee.  I am going to glide through the driver drop off and hand them their coats and their back packs as the teacher leads them away from my car.  There is a moment of zen here, where I feel like I can take a deep breath and anticipate the upcoming day.

I will smoothly and quietly drive home, listening to a podcast that is not child appropriate, as opposed to the audiobook for Harry Potter. When I arrive home I will certainly abandon my pants because I can do that.  Then I will make eggs with spinach and sundried tomatoes and do some writing while I drink coffee.  This is going to be beautiful.  Then I am going to binge watch something on Netflix, while I fold laundry.  That, wait for it...will get all the way folded without a child to rolling on it.  Just writing that paragraph made feel so much excitement.  

Not only is this going to be a quiet productive day.  When I show up to get my kids I will be happy to see them.  I will be eager to hear what they did and what they have been thinking about.  My 6 year old gives the best and most genuine hugs and my 9 year old usually starts off with ridiculous stories. Oddly I am finding the more distance I get from my kids the closer we get.  I was reading a study that says we actually spend more time with our children than any other time in history.  Personally this makes sense when I think of the experiences I had being raised by a single mother who worked full time, overtime, and sometimes a second job. I missed out on those relationships, I want to be around my kids, BUT, forgive me for saying this....kids are not all that likeable for prolonged periods of time.

I will miss their chatter at some points during the day. However I will miss them and realize that I am drinking coffee, and not wearing pants.  My house will stay clean for a whole day!  I AM SOOO EXCITED!!!! I hope everyone finds a way to get a day like this on occasion.

Perseveration vs. Echolalia

Perseveration 

Perseveration is repetitive thoughts.  If you have ever met a person who cant stop talking about a band, or knows everything about a specific war?  What about someone who cant stop thinking and talking about a perspective or new partner?  All of these are of course beyond the typical.  We aren't talking about just the basic overly interested person either.  My son for example can weave Minecraft into literally any conversation, and explain how it fits into his view of the real world.  

Perseveration on more personal events can be challenging.  Having one negative interaction with someone can stick and come up in a festering way that makes it challenging to forgive people. For instance he had a fight with another child in the neighborhood 3 years ago and every time someone mentions that person now. He then has to talk about how they fought, and how the kid was really mean that one time.  This will go on for a long period of time. This also happens with new friends, with events such as my grandmother dying, or moving to a new house.  

Perseveration is symptomatic of autism but is also seen many other mental illness.  Namely OCD, however evidence shows that perseveration has different functions in OCD and autism.  So do not assume that because someone fixates on something and cant stop talking about it they are autistic. There are other causes of this behavior    

Here are some helpful links on perseveration. 

https://youtu.be/yUEoRK8TbJM

Echolalia 

Echolalia is essentially repetition of words.  Its similar to perseveration in its obsessive and rigid presentation its purpose is not the same.  I am now beginning to think that my sons cussing is more likely echolalia rather than perseveration.  Echolalia is a natural part of learning speech, and since children with autism tend to not learn speech as much through social interaction it is a large component to this learning.  Echolalia is way for people with autism to script their language.  The video I have connected with this is post from Amethyst does a great job explaining the purpose of this behavior. I always start with the assumption that my son doesn't want to scream obscenities at people but lacks the tools and self regulation not to. He is trying to communicate his feelings in the most effective way he knows how.

The weirdest thing is that he never babbled.  My son started speaking in sentences at around a year old.  He was mind bogglingly fast to learn things.  But over the years he has adapted his own sounds.  When he was bored he would click like Perry the Platypus, when hes excited he does this shrill sound that's somewhere between a scream and a squeak...like air brakes.  

My son will when he is stressed repeat the word B***ch until he falls asleep.  When he gets really upset he yells cuss words.  What I am beginning to see is that maybe its a stress reliever to do so.  I thought he was perseverating on the words but as I understand echolalia better I think that is what is happening instead.  Replacing the words, or explaining why people wouldn't like it doesn't seem to work.  All the tools I have to help ease his perseveration into manageable thought patterns doesn't work.   But it wouldn't right?  

Really I am sure someone will read this and ask why I am not just seeing the cussing as a behavior problem. I would say aside from his having and ASD disorder, that I don't see a difference.  Behavior problems are stemming from a response to the environment, kids and adults like to make their environment respond to them and need to relive themselves of those types of pressures. So I personally knowing my son and how embarrassing the cussing episodes are believe there is an involuntary component but also that doesn't actually matter to me in terms of dealing with the behavior.  The goal should be to restructure the environment so that he doesn't need to to yell cuss words and helping him adapt better coping mechanisms. 

Some Helpful Links on Echolalia

https://youtu.be/ome-95iHtB0

Give Group a Chance?

I have been contemplating going to a support group for parents of children with autism.  The thought crosses my mind while I drive from OT, or the psychologist.  I just don't know that I want that.  I spend my time, at therapies, and consoling violent melt downs.  Going to a group and talking about how hard that is, just seems like the last thing that could help me.  Instead I go out with my friends, I listen to audio books and watch too much television. Mostly all fine, accept when I am kept up wondering about the future in ways that no one else can fathom.

First off, I am not the super together type A. soccer mom.  I feel sort of out of step with other moms. I am shy to make friends based on the sole motivation that our kids play together.  What if they stop getting along?  What if I don't get along with her, and now our kids are best friends?  Also being a chronic over thinker, makes me sort of awkward.  I mean imagine going through the process of talking to a mother about how your child told hers that he was "going to be forced to kill them" before you plan the play date.  I am both present and distant in every moment.

So today after a week in which we have had to talk to the police, and my son has been yelling obscenities at his teachers.  9 Dr. appointments, 1 trip to the ER, and a meeting at the school.  I am driving home, I am thinking about my sons future, and wondering if I am doing more harm than good. How long I can sustain this unemployed, waiting on my child lifestyle.  I am imagining my son screaming that he wants to die at his principle.  I then think of the gridlocked pained looks I get from teachers, and I think I need to go to a group.  I need to look at someone and say "I am not sure my son will ever be a fully functioning adult." and not be met with a look of sadness and "he's so smart, your doing a great job. you have to believe in him" it stings, it crushes me.

The big thing holding me back are summed up in,  it sounds so exhausting.  I am always second, or even 5th. Whether it be a dentist appointment, a job, a pair of shoes without holes, I am never #1.  A support group would be one more thing in the long list of ME things that I don't get.  My son is not like a lot of other children with autism, so it can feel like I am screaming into the void, he's not just quirky, and he's also not totally non verbal. Most of what I experience gets relegated to disciplinary arguments. "you should spank him", or something along the lines of he's just being manipulative.

All of that aside.  I have never tried, so I need to set my own tendencies aside.  I need to trust people, and not judge them so harshly.   I am going to find a support group.  I am going to go to more than one meeting.  I will be open minded.  I will resist my tendency to be cynical and judgmental.


Please comment if you have experience with support groups, please leave a comment about it. Follow on Twitter as well.

And a Happy F***ing Thanksgiving to You Too.

Its Thanksgiving.

I am so excited for the holiday, I get to spend days bonding with my sweet children, playing games and doing quaint family outings.  Establishing traditions and feeling nostalgic of my childhood.

This means I have to be fake festive and make decorations because my kids really want them, and hope that these things stave off the miserable arguments that are guaranteed to stem from one being too happy and the other being off schedule.  I am also going to try to get together with other moms to no avail only to find that I am either not that liked, or I am liked and maybe my kids are not.

The prospect that I am not ok with watching TV all day for a week was the first fight.

Waiting for turns on the computer was the second fight.

The wii sensor bar was fight # 3

Eating was fight # 4

Finally I gave up and let them watch TV.....so upcoming fight will be the TV has to be turned off.

I anticipate a "why do we have chores fight" and a "why are we too poor to go on vacation tirade"

So...I have 3 days of this 1 day of "there are too many people" and "I'm not hungry"

Then I get to spend the evening with people I don't even like with not enough alcohol, for a holiday I find very conflicting.   Since I have been a vegetarian for about 6 months now I wont enjoy the only part I like.  The leftover turkey sandwiches. I may have to give myself that because otherwise what is all this for? I mean really every bite of turkey I take makes me think about how many Native Americans died, and slavery, and Donald Trump, and all the false American symbolism.  Then I feel guilty because I love food, and I love most of my family, but I have to wonder what am I encouraging my kids to believe in?  I mean are they going to feel as cheated as I do by the legacy of lies?

Then there is also the cooking.  All the cooking that I am only mediocre at, and costs a whole week of groceries.  I thought the Puritans were poor. You mean to tell me that they were starving, they came together with all kinds of food, and fed themselves and the natives?  Yeah, sure. Now its spend almost a weeks worth of grocery money on one meal your going to share with everyone and think about how thankful you are for all that you have.  I am only moderately grateful, and I feel less grateful when I feel how one holiday cripples my budget.

This post is becoming a tirade on my anxiety about the holidays.  Just so we are all clear not everyone enjoys Thanksgiving, and not everyone has pleasant lengthy vacations with their children who are angels,  Some of us have pleasant moments sprinkled between nauseating tension. So be sure to bring good wine to dinner and don't pick fights with your politically opposing family member.

Like a Small Nuclear War

When my son was 6 and diagnosed with autism.  The Dr. told me that I would be fighting for him forever.  He said "a mild developmental disorder is like a little nuclear war" people hear high functioning or mild or any other diminutive term and think no big deal.  The reality is that it is still a very big deal. A little disability is still a disability, and a little neurological disability still impacts all the things that make a person who they are.  How the world looks, how they sense pain, and process emotions.

I have had a horrid week.  I have had appointments every day, I have had meeting with the school. I have had a police officer at the door asking about my sons outburst which I explained was a panic attack.  The officer left dumbfounded that he had been called to do a well check.  He has slept the afternoon away in school 3 days in a row. I now know its because he is spitting his anxiety medication out into water.  For goodness knows how long, long enough for him to totally fall apart that's for sure.

That little war in his brain is there when he's frustrated, or overly happy, when he is tired or hungry, sad, or feels slighted, whether real or imagined.  All those devastating misfires color his life.  Whether it be a misinterpretation of a face, or hearing a firm voice as screaming.  Even being happy is over zealous, like a shaken 2 liter spouting in your face.  He is never just your average kid, hes the smartest, or the meanest, or the funniest one.  This creates great hurdles in getting people to take me seriously, they cant picture that he might end up screaming at them or curling up in a ball on the floor.  Only why would I say that if it wasn't possibly going to happen?

When people meet him he is the most engaging child in the room.  I take him to school, or camp, or a sleep over and I say "he has autism, he has meltdowns.  He sometimes says cuss words obsessively".  I get brushed off , told how fine he will be, how smart he is. The outcome is inevitably that I get a frantic call or furtive glares as he has actually done one of the things that I had tried to tell them he would do.  When someone tells you a truth that would be hard to admit to, maybe its true, maybe its not cold cynicism but rather their unkind reality.  The consequence of thinking that parents are always excusing their child's behavior with a label is that the child is in turn held to expectations they will never be able to meet.  Time and again my attempts to take a step back form my child are devastating.

Imagine you scout out a new school, you meet with them, say my son has autism, they look at his assessments, assure you that they have all the things that are needed to meet his needs.  They show you the class room, they tell you all sorts of things that they can do for your child.  About a 2 weeks in he has a complete melt down, he attempts to run away, says inappropriate things to other students.  Does the school consider his disability valid? Do they account for it in his behavior?  Do they accommodate the behavior?  No they are, shocked, just shocked at the severity of his reaction.  The psychologist explains that he is displaying anti-social aberrant behaviors.  Just imagine how much you would want to scream! They literally look at you in awe and say "he didn't even know the name of the child that he struck"

I want to be a million other things, but I don't get to have a job, I didn't get to finish my bachelors degree.  My child has a nuclear war in his brain, with mushroom clouds, and residual radiation and a daily reshaping of the universe. It is inescapable.  All I really want is to know that someone else out there in the world is willing to accept that reality.  As he rounds the corner into being a preteen, I am beginning to be plagued by what the future looks like for our whole family.