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.

Preschool

Rowan is supposed to start school on Tuesday. I still haven't heard from anyone!  I sent another email. ..no reply.  I'm getting frustrated and impatient.

Sorry

I have to apologize for all the errors on this blog. I am often interrupted numerous times before completion. 

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.

Fiasco

Last week I got a letter in the mail that said Arwen had to have a kindergarten screening and that her teacher was to be determined.  In May, I had a meeting with a panel of people who had assessed her for kindergarten.  This consisted of a psychologist,  speech therapist,  occupational therapist,  district supervisor,  and her itinerant teacher.  (And probably a few more I'm forgetting)
We created a plan for her, deciding to place her at a school that offers a smaller special needs group,  with an extra adult.
They also offer transportation with a para professional on the bus to assist her.
(I can't even tell you the terror I feel about trusting someone in this situation)
We did a little tour of the special needs room and therapy room. I was introduced to the teachers and therapist.  I've been dreading the first day of school because I'm pretty sure Rowan starts on the same day.
Anyway. ..back to the screening letter.  I thought it was odd that they screen her since she had already been placed.  I thought because it said "teacher TBD" that they were meaning to place her based on this screening.  My first thought was that they had made an error.  I called. .. The phone rang and rang with no answer.  I emailed the special needs supervisor for the district.  She replied and said that all kindergarten students must take it.  I understand that. 
So, last night was the school orientation.  What a disaster.  The kids fidgeted through the principal's address, then we were off to meet her teacher and visit the classroom.  When we looked on the door it only showed a room number for her class. .... We walked down to the classroom and it was dark. Confused,
checked a second time for her teacher's name but none was listed. 
We found the assistant principal, who informed us that her teacher transfered and the new teacher officially starts on the first day of school.  We did talk to a therapist and she helped Arwen feel welcome.  We left discouraged with all her school supplies.
In a way, I was glad she was scheduled to have the screening so she could see the place again and get more familiar.  I got everyone up  and ready this morning.  I left a few minutes early so I could go to the bank. At the bank the phone rang...

The school canceled the screening. ....30 minutes before we were to go.  So now. .. We start school blind. I'm worried because I think Rowan starts the same day and there has been ZERO contact from his school.  I've called and emailed a few times and was pretty much told to wait.  School starts a week from today. 
I have no information and two special needs kids to prepare. 
I don't know what to think.

One day at a time. ......

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. 

Progress

Today, I tried the same as yesterday and got him to pee om the potty twice already! !!
And yesterday he said "get the ball"!!!

Major progress!

Milestone

Even though Rowan has has no concept of going potty, I put him on it several times a day. We use the potty time app. We will watch videos,  sing songs, do sign language,  play the game,  and read the books.  Every time he sits he gets to put a sticker on a chart.
Yesterday,  he peed a little bit and I shouted "Yaaaay! You peed! Yaaay!" He looked down and saw what was going on. Even though it was just a little squirt, I made a huge deal out of it.
Today he was drinking and peeing a lot. Earlier today, I put him on the potty and the same thing happened.   We tried again this evening and he squirted a little.  I shout "Yaaaay! You peed!"  He looked down and understood. I said "Can you pee more? More Rowan. " He looks down and squirts. This went on for several minutes. ..I say "more"  he squirts. In that one sitting,  he learned to control his pee. This is huge!
I hope he will realize how exciting this is and keep trying!  It's a miracle and I'm so proud of him!

My anxiety builds...

September 2nd both kids start new schools. Arwen begins a full day kindergarten.  This makes me nervous for so many reasons. 
She must be taken to the potty every hour or so or she will pee her pants trying to get there. She struggles with using utensils to feed herself and is very picky about how food is presented.  She has never gone anywhere away from us more than half day preschool.

I know that once she settles into a routine she'll be fine. This is a mainstream school but she will be with a small group for special needs. She will get many sensory breaks,  have occupational therapy, speech therapy, and be included in social groups. These are all great things. My fears are the possibility of her being bullied by neurotypical children. ...And being labeled. This brings me to the dilemma if the Autism model school would be a better fit. I want her to feel as normal as possible and learn to fit in with neurotypical children.  So I've been battling internally for some time on the matter.
Next week she has to take the reading test. She'll nail that because she can read like a first grader. Then placement.  We go to the school orientation the next day. I truly hope she will adjust easily. I'm so scared for her. Then there's the issue of transportation.  They offer transportation with a special helper on the bus for her. I know I should trust these people,  but her complete lack of knowledge about where to go and what to do. ..coupled with her desire to run scares me to death.
Now the subject of Rowan.  This scares me even worse. He starts preschool on the same day as Arwen. I have not received any contact from the school. I have called and emailed and was told to wait.  This is a half day preschool with transportation included. I've debated on the transportation issue because my car is on it's last leg.  I suppose it would be a learning experience for them...but I'm still afraid. Rowan has never been away from home without me or his dad.  He is highly anxious around new people and places.  He panics easily and has sensory problems, especially sounds.  He is not potty trained. He barely communicates. This program will also offer occupational and speech therapy. 
Like I said before,  once a routine begins it will all be ok. I feel that I should be with him at first to transition him and also inform his teachers about his needs. The thing is....His third day I have to meet with his therapist. I know he'll panic. It makes me panic. I don't want to put him through that. I'm anxious to hear from the school about how all this will happen.  I'm anxious for an orientation and meeting his teacher.
I need to stop worrying.  I'm having a lot of trouble sleeping lately.
We also have to work in speech therapy,  occupational therapy, behavior therapy and developmental visits outside school on a weekly basis. It's a struggle fitting it in.
I am very much like them in that I need a schedule, routine,  and know what to expect or I get anxious. Without a schedule we just couldn't function.

Understanding and Awareness

I watched a video on facebook that was shared by The Autism Site Blog. This video was made by a family of a little boy with autism. I am going to type out the text from this video to share with the world because of it's accuracy. It really touched me because it is exactly what my kids are going through. People just don't know about autism and how kids are affected.  Our trip to the mall yesterday was a prime example.  My boy was unresponsive to people that spoke to him and they thought he was mad.  Another friend made a comment to my daughter that she took literally and began to cry.

TEN THINGS EVERY KID WITH AUTISM WISHES YOU KNEW

1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person.

2. My sensory perceptions are disordered. Sensory integration may be one of the most difficult aspects of autism to understand, but is arguably the most critical. It means that the ordinary sights, sounds, smells, tastes, and touches of everyday (that you might not even notice) can be downright painful for me.
  
3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to.) Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear  " *&^%*&^%, Arwen. *&^%^*&^%$........."  Instead , come speak directly to me in plain words: "Please put your pillow on your bed, Arwen."

4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say "Hold your horses, cowboy!" when what you really mean is "Please stop running."
Don't tell me something is a "piece of cake" when there is no dessert in sight, and what you really mean is "this will be easy for you to do."  When you say "Rowan really burned up the track," I see a kid playing with matches. Please just tell me "Rowan ran very fast."

5 .Please be patient with my limited vocabulary. It is hard for me to tell you what I need when I don't know the words to describe my feelings.I may be hungry, frustrated, frightened, or confused, but right now those words are beyond my ability to express.  Be alert for body language, withdrawal, agitation or other signs that something is wrong.

6. Because language is so difficult, I am very visually oriented. Please show me how to do something rather than just telling me.  And please be prepared to show me many times.  Lots of consistent repetition helps me to learn.

7.  Please focus and build on what I CAN do rather than what I can't do.  Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing."  Trying anything new when I am almost sure to be met with criticism, however "constructive" becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

8. Please help me with social interactions.  It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation.  If you can encourage other children to invite me to join them at kickball or shooting baskets, it might be that I'm delighted to be included.

9. Try to identify what triggers my meltdowns.  Meltdowns, blow-ups, tantrums, or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.  Keep a log noting times, settings, people, activities.  A pattern may emerge. 

10.  Love me unconditionally. Banish thoughts like "if she would just...." and "why can't she"
You did not fulfill every expectation your parents had for you and you wouldn't like to be constantly reminded of it.  I did not choose to have autism. But remember, it is happening to me...not you. Without  your support, my chances of successful, self reliant adulthood are slim.  With support and guidance, the possibilities are broader than you might think. I promise you....I AM WORTH IT.

Patience, patience, patience.  Work to view my autism as a different ability rather than a disability. 
Look past what you may see as limitations and see the gifts that autism has given me. It may be true that I"m not good at eye contact or conversation, but have you noticed that I do not lie, cheat at games, tattle on classmates, or pass judgement? It's probably also true that I won't be the next Michael Jordan.  But with my attention and focus, I might be the next Einstein, Mozart, or Van Gogh. They had autism too.

What I become won't happen without you as my foundation. Be My Advocate. Be My Friend. We'll see how far I can go.

The type that is in bold are the things that are most significant in the life of my family.  Those are the things that really stood out and accurately describe what we are experiencing.  I hope many will read this and have a better understanding of what it is like to have autism.  Thank you for taking the time to read this.

Therapy

Last visit to our ABA therapist, we discussed transition objects for Rowan.  When we go places and he wants to stay, or play with toys at the appointments. When it is time to leave, he often has a meltdown. It makes things very stressful because I can't hear what the therapists need to tell me. I get kicked or he harms himself.  Hitting himself is the most common action along with crying. He has an obsession with cars.  His therapists have cars in the office for him to play with. When it is time to go, he doesn't want to give up the cars.  A transition toy is an object to offer him that will avoid the meltdown and replace the toys he wants to take. I started  a box by collecting some of his existing cars, as well as adding several new ones. I will hold his existing cars long enough for him to forget about them and they will seem like new toys.  Every visit when it is time to go I will offer him one of these cars.  When I give him a new car, I will take an old one and place it in the box. The cars will be in a constant rotation. I do this to save a little money.  It works like magic!  We are currently working on stopping his self injurious behavior. We began with data collection.  Documentation what happened before,  during,  and after as well as the duration of the behavior.  Looking for patterns and what the consequences were. For example: some kids crave deep pressure and their mother may hug them during an episode which positively reinforces the behavior. Thus they repeat the self injury because they get that hug.
We analyzed the data and set a plan.  Our therapist gave me some excellent advice on how to handle certain situations.  Our plan is shown in the pictures. I will also be continuing the data collection.

Sensory Overload

Today we went to the mall on a mission.  I had planned to buy a shop for a cause ticket at Macy's.  I also wanted to buy the Askate tote bag from the Vans store.
Both support Autism.
We also went to Sephora. 
Rowan has never been able to even get through the door at Sephora without using a meltdown.  This is because he has sensory problems.  Sephora had bright lights, loud music, a hustle and bustle of awesome people,  and an array of smells. Today was the first time he went in and remained calm.  In fact, we were there for quite awhile.  My older daughter was learning about her skin and make up and bought some too. We went to the play area. After that we headed out. .. but we had to stop and talk to a lot of friends at Macy's. He usually doesn't handle that well either. Today he was perfect.  He even spoke to and looked at people.  My little man is growing up. Today was a success!

Running and wandering

So I've read that fifty percent of children with Autism wander off. The very scary thing is. .. Many of them cannot communicate.  This makes them easy targets.  I've also learned they're drawn to water. 
Arwen decided to let herself outside a couple of weeks ago. It scared me to death. I panicked.  Luckily,  she did not leave the backyard.  We had more than one serious discussion on the topic.  She simply does not understand.
Yesterday, we took them to the science center.  She wanted to go to a specific area but they were closing. We had to leave.  She decided to take off running.  I watched Rowan as her father went after her. He later informed me that she was laughing and looking back as he called her. She made a game of it.
It wasn't funny.  It's a nightmare that plagues me.  Another serious discussion took place.  I'm still not sure she understands.
In the News this weekend a little autistic boy went missing.  They later found his body in water.  So sad.
There was also a teenage autistic boy who was called to a party and beaten up as others took video.  The video went viral and people are taking a stand. 
Autistic people young or old are easy targets. It's horrific.  I'm scared to death for my children.  What have we become as a people?

Long Overdue

...so I haven't updated in a long time.  Both of my youngest children have autism.  I'm going to use this blog to document our daily struggles.