Saturday, May 10, 2014

Moki's Musings: Autism can be very silent sometimes.  On a good da...

Moki's Musings: Autism can be very silent sometimes.  On a good da...: Autism can be very silent sometimes.  On a good day most people would never look at my son and think of him as "disabled".  A lot ...
Autism can be very silent sometimes.  On a good day most people would never look at my son and think of him as "disabled".  A lot of our own family have never truly seen what autism is like.  Most of our struggles with kiddo have happened out of public view.  In our home or in his schools.  I get strange looks when I talk about how we don't think he will live independently.  Looks like well the past 6 months have gone well right?  Looks that feel like they are saying well there doesn't look like there is anything really "wrong" with him.  It is hard to explain how mentally exhausting it can be.  Always worrying.  Always having to deal with school issues.  His food issues.  His bathing issues.  I get tired of people saying well he needs to bathe more.   No shit I know that.  However you try to get a 120 lb kiddo into a shower when they are going to meltdown over how the water "hurts" them.  Or how brushing his teeth makes him want to gag.   Or how he hates changing clothes because he knows the clean jeans will not be as comfortable as the ones he has worn for a week.   People can see him for a few hours at a time and not notice a thing.  Trust me I do.  I notice every hand flap.  Every look of fear or anxiety that comes across his eyes.   It certainly isn't silent for those who live with somebody with Autism.

Friday, May 10, 2013

It has been a while

     I feel like I am finally in a place where I can update this blog.  The past 2 months have almost been a blur for me.  There have been many days when I have looked around and went this really cannot be my reality right now.  I never had problems accepting the fact that my oldest son was autistic   But I had never dreamed it would mean that he would be near suicidal at the age of 11.  That he would have to enter a behavioral treatment center.  That those cost and the cost of his new medicines would cost us more then our rent each month. Now that is not a complaint.  I am more then willing to do and spend what it takes for him the "get better".  There will never be any cure for what ails my son.  

     What I have learned and more importantly what he has learned over the past 2 months is ways for him to deal with being out of sync with the rest of the world.  We have gone from having 4 to 5 hr long meltdowns every day to maybe a small meltdown every 2 weeks.  He will never be cured.  The autism will never go away.  I am sure once he gets started back in public schools in the fall the same triggers will be there for him.  I am hopeful though that he will be able to manage his stress better.  That he will be able to identify when he is getting overloaded sensory wise and will take his much needed breaks.  We do breathing exercises at home when he starts to get stressed.  We have done relaxation exercises. He has taken to being the "teacher" here at home with his younger siblings.  He will see them getting upset and will try to talk them through how they are feeling etc.  

     I have found out that he will be discharged at the same time that would have been his last day of school.  We are going to have a hectic summer.  We will be visiting family in Missouri for a week, moving, and then we will have to go all of July and August with his father being in Houston for training.  I am hoping for a great summer.  I hope he can enjoy every day and not be stressed about what to expect at the new school in the fall.  I am hoping for all of us this summer just brings fun.  I look at him now and can't contain just how proud of him I am.  He has come a long way in the past two months.  I know that we will still have meltdowns.  Nothing is going to go away forever.  But I can honestly say that the future does finally start to look a little bit brighter. 

Sunday, March 24, 2013

Where to begin

The past 4 days have been a mix of despair and hope and frustration.  On Wednesday morning I was annoyed.  My son was in a meltdown at school (again) and I had gotten a text that the principal wanted me to escort him to every class that day.  I put off the drive to the school as long as I could.  As most of you know we have been in family therapy.  We just went the night before.  Another night of my son not saying why he says the things he does when he melts down.  The focus was more on how we handled his meltdowns different as parents more then my son himself.  As we left my husband was like we need somebody who specializes in autism because this isn't getting us anywhere.  I agreed with him but was still willing to try this family therapy thing.  I was stressed to the max and felt it could be a good outlet for me.

I pulled up to the school and let his aide know I was there.  I sat in the office for several minutes alone.  I could almost feel something in the air.  I could see the behavioral therapists go in and out of the principal's office.  A voice in my head went this is NOT good.  I was hearing whispers of this needs to be on school letter head and she needs to know that her child whisper whisper whisper.  I still was not prepared for the clusterfuck that I walked into.

I was walked down the hallway to where my son was holed up grunting and banging inside a cupboard.  His aide was sitting on a chair in the doorway.  I was led into a conference room.  I knew one of them was carrying a piece of paper.  I knew whatever was on that paper was not good.  I could feel myself start to fall apart.  We are concerned they started with.  I caught a glimpse of what was on that paper and started to cry.      It was a letter informing me of my son's suicidal threats.  A kind of we need to cover our ass kind of letter that I needed to sign.  A letter that stated my son couldn't return to school until this matter was resolved.  In the middle of his meltdown and his normal I wish I would die, I wish I was never born , I don't deserve to be alive turned into something else.  Once before he has asked his dad to kill him.  The week before he tried to choke himself.  Since Sandy Hook our district has had armed officers in every school.  His officer was making his normal rounds when he heard my son banging and yelling during his meltdown.  As the officer peeked in the room my son turned to him and said "please just kill me and end my nightmare".  Those words spoken to that officer started a process that couldn't be stopped.  We ended up in the ER of a children's hospital.  The first plan was that my son needed to be sent away.  About 2 1/2 hrs a way to hospital for inpatient treatment.  No parents allowed.  Apparently my county no longer offers any services like this.  Apparently we were lucky to even get an assessment.  After a few hours and several long talks with intake assessors etc they got a good sense of how my son is.  They realized that sending him away would do him more harm then good.  But he needed help.

At some point the intake nurse asked again about our insurance.  Then she was like oh wait you have private insurance.   Then she said she knew a place.  For the same reason that our county no longer offered many services this facility no longer accepts medicaid or state insurance.  But we had private insurance.  This facility had recently changed it's name and it took about an hour for them to actually get contacted.  We left the ER with no real answers but just a phone number.  After several more hours of frustration because of phone lines not working on Thursday morning I had my first real good talk with this facility.  The first hurdle was our insurance.  After a few hours we got word that they would cover it but it is still going to cost us at least $3,000 out of pocket.   Now we are just waiting on paperwork.  Days later STILL waiting on paperwork.  Waiting on the records from the ER assessment   I have done and sent them everything they need from me and still we wait.  This facility sounds like a dream come true.  They specialize with children who have emotional issues, children who are struggling to stay in the class room and children with PPD which is the blanket under which Autism is found.  They do therapy in the morning and school in the afternoon.  He is going to have to leave his old school behind for now.  I feel like a broken record going on about this journey blah blah blah.  This is a fork in the road I never ever expected.  And it really isn't a fork in the road it is like we hit a roadblock and there is only one way around it.  No easy detours.  But then again Autism is rarely ever easy.

Monday, March 18, 2013

Short changed?

Spring break lead me to taking a break from doing blog entries last week.  The joys of having all 3 kids home all day long left me with barely a minute alone on the computer to gather my thoughts.  Tomorrow the hubby and I and our oldest head off for our second family counseling session.  I have debated over and over again in my mind if I should include the other children in this.  If you only knew the debates I have in my head during the course of a day!

I have been thinking from time to time that to my other two "normal" children, it isn't quite fair how they kind of get looked over.  We can't simply all decide at the last minute to go run to the store or anyplace for that matter.  Most things need to be planned enough in advance so that my oldest can adjust mentally to the idea that we are deviating from the schedule of the day he has in his mind. There have been many times over the past oh 5 or 6 or 8 years that my two youngest children have had to be told.  Mommy can't help/talk/listen to you right now because I am dealing with your brother.  For hours at a time sometimes.  With a few exceptions Spring Break was fairly smooth sailing.  We started off rough and then we had very little problems the rest of the week.  As I am trying to figure out how to be a better parent to my Autistic child I also need to remind myself that I need to learn to be a better parent to my other children as well.  I hate admitting this but there are times when I referee as a parent I do tend to "favor" the autistic child in hopes of preventing a meltdown. My other son has noticed his brother melting down and will comment with a "oh great there he goes again" or "fine have it so you don't xyz".   As I have said many times before we are really just in the beginning  stages of our journey.  I need to remind myself that my other children are part of this journey as well.

Sunday, March 10, 2013

It affects all of us.....

My middle son asked me a question yesterday.  He asked me at the end of a very trying 2 hrs.  His brother had a meltdown before , during and after we went to the store.  It was an unplanned trip to the store.  I typically try to avoid taking all three kids with me.  My oldest son does not shop well.  The grocery store, full of people and bright lights and noise, typically overstimulates him.  I knew my husband would not be back from work until later.  Looking back I can see that nothing I needed from the store that very instant was worth the consequences of going.  

I went through the house and rounded up all 3 kids.  We have to go the store for a sec.  On a perfect day we wouldn't have even had to spend 15 minutes getting what we needed in the store.  GRUNT.  That was the first red flag I should have listened to.  What I should have done was try to tell my son about 30 minutes before hand that we were going to take a trip to store.  Transitions are hard for him.  Normally I have to give him a "countdown" of sorts.  For some reason I ignored that flag and kept pushing.  I wanted to go to the store.  

I got him into the car without much issue.  I thought okay he is going to be able to fight this off.  He will be able to right the ship that was listing to the side.  I will spare you the dirty details.  The ship went straight to the bottom.  I should have turned around when we got to the store.  But my other children had money they wanted to spend and quite honestly I am tired of them getting shortchanged some days.  So I stupidly pushed ahead.  I am now probably to embarrassed to step foot in that store for a while.  Once we got back into the car I lost it.  The days of frustration over the past few weeks were finally too much.  I melted down.  Big time.  I cursed autism.  I told autism I hate it.  I told autism that I was tired of it controlling our lives.  My husband picked that unfortunate time to call me and tell me he was home early.  

The next hour was spent in tears.  Both mommy's and kiddo's.  I typically try very hard to not let my son see how this all affects me.  Yesterday I couldn't stop the tears.  I was crying so hard my other two children got very quiet and afraid.  They both sat on either side of me and were patting me on the back.  Then my son asks me the question.  "Mom, is there a cure for autism?"  As I had to tell him no there wasn't a cure it hit me hard.  My other two children suffered as well as everybody else.  They had to watch the meltdowns and the struggles.  The times when I had to tell them I couldn't help them or watch them do something or whatever else because I was dealing with a meltdown or situation.  I think my son was hoping I would say.  Yes.  Your brother will be cured in X amount of time and we can get back to normal.  I could see it in his eyes.  This was our normal.  The hurt in his eyes made me cry even more.  The advantage my autistic child has in all of this is once his meltdown or episode is over he is back to his cheerful self.  It took a long time for everybody else in the family to get "over " it.  

Wednesday, March 6, 2013

Opening doors

So last night was our first night of family counseling.  Having never been to therapy before I had no idea what to expect.  I made it clear over the phone that we were there for my son's autism.  My husband, not seeing the benefit in therapy at all, grudgingly agreed to go with us.  After two information booth stops and a lot of circling we finally find a place to park.  I used to work on a college campus but even I was unprepared for the chaos of trying to park.  Then for some reason in the parking lot my seat belt locked up on me.  It was like my car was like nooooooo this is a bad idea I will not let you go type of situation.  Finally I was free but I was already getting flustered.  Ok where is the stupid pay thingy for the parking?  I found that and then I know I can read.  I can follow directions quite well.  Enter your license number and then hit valid.  Ok, easy enough.  BEEP BEEP BEEP followed by please wait and then the same message over and over again.  After 5 mins I finally said well I guess we will just get a ticket because we were going to be late.

So by this time I am beyond flustered and we still had to find the therapy clinic.  Once we got there and got settled in we got all the paperwork.  That is when my husband started glareing at me.  Even though we were not here for marriage counseling they wanted all sorts of information about our marriage and about our childhood tramus etc.  "We are NOT here for this", he hissed at me.  I know I know I said.  It is just silly paperwork fill it out.  So then she takes us back one by one first.  And she wants to know about what conflict looks like in our house.  Uhm.....blank stare.  I fumbled for a bit and was like I am confused.  We are here for my child's autism.  And then she was like she knew that but they needed to find out a bit about the home environment first.  Then it dawned on me she was checking for domestic violence.  Sigh,  I thought man my husband is going to be pissed when he gets in here.  I warned her that he was not going to be happy about this and how he was already annoyed with the personal questions on the paperwork.

Finally we all got in the room together.  And boy what an awkward first 15 mins that was.  I know we were being watched because I could hear the person on the other side of the two way mirror.  I know from the beginning that we would be used as a teaching guide etc so I wasn't upset about it.  My son, having no idea what to expect, shut down.  Wouldn't look at the therapist.  Wouldn't talk to her.  Finally she pointed him to some toys.  After we got past the whole what do you hope to get from therapy business she was able to draw my son out some.  After about 30 mins I thought well this isn't toooo bad.  She was able to get my son to express how his mind is like a hallway full of doors.  He keeps things behind each door in groups.  Behind one door is his fun stuff like video games and computer things.  I have a feeling that door is the one that is open the most.  Behind other doors are things that scare him or upset etc.  This was a analogy he had never told me before.   So just when I thought things were going good our time was up.  I could tell my husband was not a fan of what had just happened.   He wanted to wait a month and then come back. I wanted to come back in two weeks.  I had a feeling we needed to go in weekly, but even with the sliding scale twice a month is what our budget will allow.  So we go back in two weeks.  Maybe eventually I will learn how to open all those doors in my son's mind.