A step forward

So Arwen was accepted into a social group that was supposed to be 6 years and up.  they kindly made an exception for her at the request of her therapist.  I had a conflict however.  I had to rearrange our schedule completely. Both, Arwen and Rowan have speech therapy on Mondays.  The people at Northwest Ohio Speech, Language, And Rehabilitation Services aka NOSLARS  really went out of their way to help me fit therapy into my already crazy schedule. I am so grateful for all the help that we are getting.
My husband was stuck on a call at work and arrived home late on Monday.  This made us 10 minutes late for the Social group.  I was already pretty nervous about that. I crept in and took a seat.  Luckily they hadn't started the session.  There was a mixup and some other folks were also late.

They split the kids up into their groups and the parents into a group. I was actually very nervous and excited.  It was so wonderful to meet other parents with Au-some children.  I think I need this.  I really look forward to getting to know them. We can learn from each other.  I am already a part of an online social group.  I spend more time talking with them than my own friends.
Anway we did our introductions in the Social group.
This nearly broke me.  I was ready to start bawling. The heat filled my face....I was flushed and my emotions were ready to boil over.  Somehow I maintained my composure.  Thank goodness.  I feel foolish crying.
What caused this? you might ask..
The stories they told.  The way their children are treated by others.  The laughing, pointing......the inability to make friends. ....the desperation and sadness.

Is this what I have to look forward to????

I see everything in a different light.  Thinking about the future is painful.  So I will settle for right now.  I'll cherish the precious moments that I have.  I will give love as much as I can.  I'll help others.

They have made me a better person.


I left that meeting feeling great.  Arwen had a great time in her group.  I am so happy to think that maybe I can connect with someone who understands.

Quirky kids

Two cool things about today. 

1. Rowan was chanting pee pee pee pee pee.....he went into the bathroom on his own. He climbed up on the potty and started peeing.  It shot across the room but he knew what to do! !!!

2. He said "yellow bubbles".  That was him asking for the yellow bottle of bubbles.

And a quirky kid moment by Arwen: I told her she could jump in the bath, get washed quick and get out, so that she could play Pokémon.   She said "I don't want to jump in the bath! "

In case you aren't aware. ... kids with autism are very literal.  Haha

The bus...

We have anxiously awaited Arwen's first day on the school bus.  She has talked about it for a week!  Today was the day!  We were ready!  There was a 2 hour delay today.  We were outside before the scheduled time. We waited happily.  ...........and we waited........counting the minutes.......the time came and went.  That was ok...they had to work her in.  We waited....21 minutes later....I call.....i was watching Rowan through the window laying on the couch watching tv.....waited.....
I was on the phone for 30 minutes.  We waited outside for nearly an hour. The bus never came.  they finally radioed the driver and discovered that she had never gotten the information. !!!!!!!!!! :/
At this point, Arwen was going to be late for school.She was trying to play in the dirt.  She was restless.  We had to rush in and wash her hands.  They apologized and assured me that the matter was resolved and that the bus would bring her home today.  I am understanding of these things.  During the call....Rowan peed on the floor.  I had to rush and get him ready to go ...to take Arwen to school.  While driving, I called the school and explained why she was late.  I also had to walk her to class and interrupt to tell them what was going on.

Also...this morning I had Rowan in his underwear. I smelled something...but he was dry.  I took him potty.   He was very shifty....I knew he had to poop.  He didn't go.  I left his underwear off, so that we could rush back to the bathroom if there was any sign.  Then... I received a very important phone call.  I'm giving information to the caller when I notice.....poop coming out.  I said....oh my gosh.... just a second please.....i grab Rowan and start carrying him to the bathroom  His turd falls on the floor!  I'm on an important call with a brown emergency.  HAHA  
Anyway....amidst it all...it's a good day.

Long day...

Yesterday was a long day for us. I took Arwen to school.  I went in and talked to her teacher.  I drove home just in time for Rowan's bus.  I went straight to the gym. Then back home to meet Rowan's bus.  I had a 2 hour window before I had to leave.  Tim came home early to watch Rowan because of Arwen's appointments.  I picked up Arwen from school and fed her a gogurt, juice, and rice krispie treat.  We drove across town to her appointment with the developmental pediatrician.
   Arwen has changed so much over these last two years.  She went from being socially withdrawn to crowding the space of others, She went from being terrified of sound to coping with it,  Developmentally her physicality is still awkward but she handles herself.  She has a bone condition that also affects her coordination a little but it isn't anything that can be treated.  Her fine motor skills are still that of a 3,4 year old. Things like her pencil grasp regress quickly.  But all in all.....her improvement has been drastic.  She used to rock quite a bit as a young child......but now it is rare .  When she actually does it, she slams herself back into the couch.  I remember being pulled aside from one of the teachers at her preschool.  The teacher asked "When did you find out she has autism?"
Then, I was really unsure and no diagnosis had been made. She had OT and speech and had been assessed through the school system.  But I didn't know then that they don't tell you your kid has it.  I answered,"she doesn't have autism."  I said  "she has a few delays."  Then, the preschool teacher said that Arwen's teacher told her that Arwen has autism.  I had been suspicious about it.  I was really mad.  I was mad because nobody gave me a clue or told me about autism.  Anyway.....she has come so far.  The developmental pediatrician said....by looking at and talking to her .....you would never know.  She has to go for the big ADOS test.  I know she has autism....but I feel that it's very high functioning.  Likely, Asperger's.  Trust me, I have done weeks of research,  Even the school speech therapist, occupational therapist, psychologist, special needs supervisor, itinerant teacher...and i forget who the other person was all voted that she falls into the educational category of autism.
If she doesn't get that diagnosis, I am going to be upset.  My son has the micro deletions in his chromosomes which shows this is genetic.  We are seeing a geneticist in January.  Anyway....I'm worrying again.....and it's silly.
After the appointment with the developmental pediatrician.  We went to the lobby. Arwen was starving.  We ran out to the car, where I gave her a little turkey and a string cheese.  We went back in and it was time for her behavioral therapy.  After that was over it was past dinner time.  We drove home ....it was nearly 7pm.  She ate dinner and off to bed.  We skipped bath that evening,  I was spent by the end of the day.  Honestly, I was spent before we even went to the doctor.

Kindergarten Day 3

Everything went well. I even got to meet Arwen's new permanent teacher. She's great. I'm pleased.  After dropping her off I took Rowan to behavioral therapy.
    After therapy we picked up our shirts for the Autism walk. We spent 40 minutes at the Autism Society of Northwest Ohio talking about resources and local offerings. Very good people over there!
Then home to get Rowan down for a nap. I did house cleaning, lunch,  and phone calls during the two hours he slept.
I got him up and we went to pick up Arwen. It went smoothly.  We went home and got Arwen changed. Tim came home early so we could all go to Rowan's orientation. 
His teacher is excellent.  I spent a lot of time discussing Rowan. All sorts of questions were answered.  She gave me her email.  We've gone back and forth talking that way as well.  It's wonderful.  They have an awesome motor room that  he's going to love!  His teacher really put me at ease.  While we were there he was so happy.  He really liked his classroom.  I  said " Rowan,  this is Miss Laura. "   He went over to the play area then turned and pointed at his teacher saying "Miss Laura, Miss Laura! "   I was so excited, he was talking!  I realized he needed a book bag. .. One with the strap across the front because he's never worn one before.
So we headed to Target and got him a backpack.  <3    My baby is getting so big.
What a long day!   We went home. ..ate... And to bed!

Meltdowns

...I haven't posted in a few days....because frankly...I've been a mess. It has been pretty emotional.

    Monday morning, Arwen woke with a rash on her face.  I spent the day Sunday stressing about if she would be allowed to go to her first day of Kindergarten on Monday.  I also spent Sunday, scouring the internet and social media, looking for answers.  Monday morning I took her straight in to the office and explained that she was a new student and that she had this rash.  We went to the nurse's office.  The nurse allowed her to stay.  I still needed some peace of mind so I called the doctor and scheduled an appointment for that afternoon.
The school was great, answering all my questions etc   The para in Arwen's class is a godsend.  They had not yet found a teacher for her class and had a substitute. The kids in her class are so precious. I picked her up early and took her to the doctor.  Everything is ok with the rash. It appears to be a contact rash.

Kindergarten Day 2
I took her in and talked with the para again. This time I was armed with a list of questions, which she graciously answered.  All was well ....until in my idle time, I received a message from the transportation department. They were letting me know Rowan's bus information.  Then, the anvil fell on my head. What about his cars?  He doesn't go anywhere without his cars. Then I really start panicking, thinking about how scared he will be. Most of the time he is in his own little world. How will they get him to conform to anything.  What methods will they use and disciplinary measures?  I don't like it.  I don't want him to go.  I want him to stay home.  I wanted some free time to take care of things....maybe go to the gym...gather my sanity.......but now......NO! I don't want him to go.  I'll be alone.....while he is confused. Will he think I abandoned him? He won't understand I can't do it. I can't let him go.....and I started sobbing.  Then, I gathered my composure and remembered that this is necessary.  This will help him. He may love it.  He will learn things that I can't teach him.  He will be with other kids, doing loads of activities.  He'll be ok.
............it was time for me to get him up from his nap and go get Arwen from school.  What a FIASCO. The place the teacher told me to go was full (even though I got there early).  I had to park in a no parking zone with 15 other cars and frantically rush to find her.  She was not around.  Another teacher told me she would be in a different spot.  I waited there,......I was getting really nervous.  The other cars that were in the no parking zone were moving. The principal was in the lot.  I went up to him...distraught and harried....I told him where my car was...and why it was there.  I thanked me and said it was ok to be parked there.  I went back to the area where they said she would be.   Still no sign.  Another one of the staff that I have talked to a few times came up to me and said....."the special needs kids come out at a different door where the bus kids come out".  She walked me there and told me that she had found a teacher for Arwen's class. I was grateful to hear that.  The second Arwen saw me......she started screaming and threw herself on the ground.  It was because she REALLY wanted to ride on the school bus.  I and the other teachers explained why she couldn't go on the bus that day.  She was not having it. This was the worst tantrum she has ever had.  I tried to get her to walk with me to the car.  She refused and continued screaming.  I pulled her toward the sidewalk and she wouldn't walk but went down on the ground again.  I couldn't carry her because I was holding Rowan.  My back was already hurting and it would be very risky to try to carry her while she was having a tantrum.  She might have injured Rowan.  A staff member intervened.  She told me to go get my car and pull way forward, away from the buses, and she would help me get Arwen in the car.  I did...and somehow she was able to calm Arwen and get her to the car.  Arwen was shouting and saying she would never go to my house etc.  I am sure it was suspicious, because the lady started asking questions.  She didn't know Arwen was autistic, or that she struggles with transitions.  Arwen was very mean so i was silent the rest of the way home to help her calm down.  I felt like I was going to have a meltdown myself....they crying type....but I didn't.  Once we got inside....Arwen said she was sorry and we had a long talk about school, the bus, and her day.  Everything was ok again.
 

Exclusion

There is a group of neighborhood boys that get together and play next door. They have a lot of fun. They jump on a big trampoline and rough house.
Arwen stares over at them, her lip quivering,  her face flushing, so sad. She desperately wants to play with them.
They don't understand her. She doesn't play appropriately.  Her gross motor skills are underdeveloped and she's clumsy.
Her exclusion hurts me. Her sadness rips my heart out. Her pain is my pain...And this is only the beginning.