More milestones

After brushing or teeth...Rowan lingered in the bathroom playing with his cars.
I was in the dining room and I heard, "yaay"!  I went into the bathroom to see him sitting and peeing on the toilet.  :)
Also, when he needs to poop, he now brings me his diaper.  This means he understands when is coming. 
Now for the hard part. ..easing his fear of pooping on the toilet.  He's terrified and panics.

In case you thought I was kidding.

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.

My worst fear...

What's going to happen to them when I'm gone.  Who's going to take care of them? Who will love them as much as I do? Who will understand their needs? Will they be institutionalized? Yes.... I'm well aware of my mortality.

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.

Genetics

Rowan's lab results came back.  He does have the  "deletions" which are tiny parts missing in the chromosomes.  This missing part is known for causing disabilities and autism. He now also has to see a geneticist. We will probably all have to get tested.  I don't know what this means for him but I still hope that he will get better and better.  I talk more with the doctor tomorrow. For some reason ...i feel like crying.

Words

This morning my husband gave my son a bowl of dry cereal to snack on before he left for work.  Rowan loves cereal but I didn't really see him easy any.  Later, as I'm doing the morning shuffle, Rowan says "want omelet. "
I immediately ran into the kitchen and cooked his omelet. Every word is a blessing and lime his speech therapist says, " if he asks, try to give him what he wants. "
I can't even express how grateful I feel.  Yesterday he said " Get the ball. "
With every word. ..my fears are lessened and my heart is filed with joy.