Another step for Miles

Today we headed to Children's Hospital yet again.  The pediatrician that saw Miles in September had noted that he wanted to have a follow up appointment.  We thought it was kind of strange that the follow up was so soon and strange it was....


The doctor asked US why we were there for the appointment.  I started to get annoyed that we had driven so far for nothing.  I had no further questions about Autism.  I did ask if he thought I should get Miles tested for food sensitives/ allergies and he said no.  He first mistook my question as me asking if a gluten free diet would cure Autism... and that is not what I was asking.  I just wanted to know if it would help out his G.I. system.

Then at the very end of our meeting the doctor recommended that we have Miles DNA looked at for any possible markers.  Many times Autism goes along with other disorders.  This way we can know if there is any other components to his Autism. 

We decided to go ahead and have the tests done.  I am a little curious and knowing how interested Andrew has always been in genetics I knew he would want to do it too.  Plus we were already there and we wanted the trip to feel productive to understanding Miles.

He was a trooper and they got 3 little tubes of blood.  So now we wait.  We will hear results either way.  If there is nothing someone will call us and if there is something the doctor said he will call us. 

Next steps for Miles Monkey.

Last month we finally got into Childrens' Hospital to see if Miles had any sort of diagnosis.  For the most part I did can't care about getting any sort of diagnosis for him.  I didn't want something to use as and excuse or anything that would make someone see him in a negative light.

To me a diagnosis would mean being more accessible to services.  Without a diagnosis many therapies are not covered or even offered.  A diagnosis would mean more help and more way I can advocate and be a voice for my child. 

The diagnosis he received was Autism Spectrum Disorder (ASD)  and Global Developmental Delay.  There were a few other diagnosis mentioned something to do with sensory but I would have to get out the papers to remember exactly what it was because it is also a common diagnosis with ASD.  We were also told that in the future he may be given the label of intellectual disability. 

So what does this mean for Miles exactly?  Well Global Developmental Delay means that he is delayed in 2 or more developmental areas.  For Miles it is communication and socialization. 

Autism is defined by the presence of difficulties in three (3) areas: social deficits, communication problems and repetitive or restricted behaviors, with an onset in at least one area by age three (3).  It may or may not be associated with language delays or intellectual disability.

It is estimated that one (1) in every 88 children is diagnosed with autism (and one (1) in every 54 boys), making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.  An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Autism Spectrum Disorder (or ASD) is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). 

ASD is a "spectrum disorder" because it affects individuals differently and to varying degrees. <http://www.thearc.org/page.aspx?pid=2536>

What I understand from the report we received about Miles is that he was given the diagnosis  of ASD and not Autism because he has social deficits, communication problems and some characteristic behaviors that could indicated being on the spectrum. 

Since diagnosis Miles has been able to have more therapy.  This therapy is called Applied Behavioral Analysis or ABA Therapy.  The purpose of ABA Therapy is to obtain wanted behaviors and eliminate unwanted behaviors.  For Miles the wanted behaviors are communicating, attending to tasks and more appropriate social interaction.  The unwanted behaviors are just the opposite, not communicating, lack of focus and strange social behaviors.  Wanted behaviors are rewarded with something that makes Miles happy... mostly food, or swinging or spinning. 

So far Miles loves it even though it is intensive.   He will go 5 days a week for 2 hours a day.  Then he goes to school for 3 hours a day for four days a week and 30mins of speech therapy on Friday.  The thing I think I love about the ABA therapy is that is reflects on what they have been doing at school.  It is like an extension of school with 1:1 support.  His class uses the same ABA approaches.  They work on getting Miles to 'mand' or request things he likes... as some of you know he is great at signing for CANDY.   The great thing is that without consultation with each other both the school and ABA therapy came up with the same mands: swing, movie, and cracker/candy.  

Miles second day of ABA was awesome.  The therapist decided that maybe 'movie' was not an motivator for Miles.  So she tried 'spin', and spin was a new sign.  He started using spin spontaneously and that is what the want, and he did that in one day!  She would have Miles put pegs in holes and then he would sign 'spin' and while sitting a circle that spins she would spin him, stop and he would do it all again. 

Down

I have been feeling a little out of sorts lately.  I'm not sure what it is, maybe it is everything. 

With everything I have been so moody and often short of patients... I usually have more. 

Avery started Kindergarten this week.  That is a big change for all of us.  I put him in full day and think that will be good for him.  I have seen positive changes in him and growing up changes in him.  One of his recent developments is going night diaper free.  Like everything, going diaperless was Avery's idea and he has been 99% accident free.  Even though that is a great thing since he is almost 6 I feel a little sad that my baby is growing up.  He also has been sleeping in his bed all night.  It is like Kindergarten has flipped a switch in him.  I also wanted to move his bed time up by an hour starting with 1/2 hour and school has naturally done that for me. 

Miles goes back to preschool this year.  I am more sad that it is his last year in preschool than the fact that Avery is in Kindergarten.  I feel like this will be a good year for Miles and he will have a lot of growth in his development.  One huge development is that Miles has now become his daddy's buddy.  He has always been a "momma's boy" and probably always will, but he pushed me away the other day because all he wanted was his daddy and only Daddy could make it better. I am very happy for that but part of me is really sad that I couldn't make him better.   On a bittersweet note, Miles is finding that communication is important.  Here comes the frustrations.

Miles has also been getting into a lot of trouble... Trouble Monkey!  Think of trouble people usually think of 2-year-olds get into.  We skipped that with Miles.  I keep having to remember that Avery was also that way.  A good little 2-year-old and when he was 4 1/2 I wondered where it all came from.  So in my family it is 'normal'.   That combo and the communication issues then makes for mysterious melt down at the frozen yogurt shop and a birthday party.  At least the people at the party were more understanding.  The most likely childless couple walking across the parking lot made me feel like a crazy lady force feeding my child frozen yogurt... that I didn't even pay for... that is another story!

I don't think I have fully acknowledged yet that my mom is moving from Colorado to Arizona.  I know in reality that she could have moved farther away but it is pretty far away.  I farthest away I have been from my mom was when I lived in Denver and she was in Fort Collins.  My mom drove to Denver anytime I needed her to watch my kids.  I am happy for her new adventure in life and I know I can go visit.  I know I am lucky to have her and thankful she did not die from her heart attack in 2000.


I am also freaking out about my cat Ziggy.  He has been sick on and off his whole life.  Lately he has been worse and then he gets better.  He has been peeing in places he should not and it is stressful.  One week he was doing really bad, I though it was it.  I should have taken him in to the vet then, I should have had him put down then.   Unfortunately the same week Andy's mom had a severe medical issue and me crying about putting my cat down seemed to be trivial so I thought I would wait.  Waiting has just made it harder for me to do.

I feel I have a lot more to write, but I keep getting interrupted therefore messing up my sentimentality of what I want to say. Maybe it will come back to me.

The Unlikely Candidates
Follow My Feet - The Unlikely Candidates

There's a fork in the road in front of me,
At the crossroads of identity.
The Devil is standing to the left.
He says "Either way, they both lead to death."

And the high road's steady and steep,
And the low road's easy and deep.
Guess I'll follow, follow, follow my feet.
Guess I'll follow, follow, follow my feet.

I've a friend who lies and steals and cheats.
Always taking more than he can eat.
He says "To get what I want, I would probably kill.
If I don't take it, somebody else will."

And the high road's steady and steep,
And the low road's easy and deep.
Guess I'll follow, follow, follow my feet.
Guess I'll follow, follow, follow my feet.

There is no time,
Falling behind,
Plant harmony,
Or burn the tree.

I have a friend who loves humanity,
Braves bullets in war-torn countries.
He traded a life of wealth to help the poor and ill.
He says "If I don't do it, nobody will."

And the high road's steady and steep,
And the low road's easy and deep.
Guess I'll follow, follow, follow my feet.
Guess I'll follow, follow, follow my feet.

I don't know where,
I don't know where,
Where my path will lead, but I'll follow my feet and
Hopefully they'll keep me on the ground and I'll keep walking to the sound

Follow, follow, follow my feet.
Follow, follow, follow your feet.

Wake Me Up

"Wake Me Up" - Avicii feat Aloe Blacc

Feeling my way through the darkness
Guided by a beating heart
I can't tell where the journey will end
But I know where to start

They tell me I'm too young to understand
They say I'm caught up in a dream
Well life will pass me by if I don't open up my eyes
Well that's fine by me

[2x]
So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost

I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don't have any plans

Wish that I could stay forever this young
Not afraid to close my eyes
Life's a game made for everyone
And love is the prize

[2x]
So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost

Didn't know I was lost
I didn't know I was lost
I didn't know I was lost
I didn't know

Brianna come back!

I miss Brianna.

Who is Brianna?  She used to work in the childcare room at the Chilson Recreation Center.  She was familiar with Miles, how Miles is.  Brianna would not call me to the room unless it was very important.

This new girl... I don't know her name... is getting on my nerves.  It has been months since Brianna left and I thought her replacement was ok.  


Every Tuesday and Thursday for the last 2 years we have been dropping the kids off for 45mins - hour while we workout and then we pick up the kids and use the pool.  Avery plays with the other kids or on the computer and Miles reads books or plays with certain toys he likes.

Four out of the the last five times we have gone the girl in the childcare has made me upset.  The first two times it was because I arrived to pick up an unhappy Miles and come to find out it was because he pooped his pants and she didn't change him.  One of those times you could not smell him though and even I was surprised so I let that slide a little.  

The third incident happened as follows:  I get called down to childcare.  I arrive and there are only THREE children in the room.  Two of the children are crying; a little boy and Miles.  The little boy appears to me to be under the age of 2 and is crying because he wants his mom (or maybe he pooped his pants since she does not check).  Miles is crying because the little boy is crying.  The gal proceeds to tell me that she can't call the little guys mom because she is at swim lessons... huh, what?  So what you are saying is that you have to interrupt MY workout so that I can remove 2/3 of the kids.  Ok fine, I guess I should not be so selfish.... over it, move on.

The next day we are there; this is the day I thought I was sending the cat to his grave.  I am very upset and stressed out.  It was a weird day and I was counting on using the elliptical to get out some stress.  It was a REALLY good workout and I was pumped up for sure.  When I am done I take time to stretch and relax... meditate a bit.  While I am stretching I hear "Andrew or Shawna, please report to childcare."  SERIOUSLY???? I get up and I go there.  Miles is crying again because a very little guy wants his mom.  The kids crying was very upsetting to tell you the truth.  If I was in a room with him I would be upset too.  This time she proceeds to tell me that Miles did not want to be comforted and she could not get him to stop crying.  CALL THE BABY'S MOM. is what I wanted to yell.  Remove the crying child and he will be fine.  So again I have to remove my two kids.  Then while we were in the pool I hear her call someone else to childcare... probably the baby's mom. 

I understand Miles does not express his needs.  I understand he does not want that weirdo to comfort him.  I understand that she is probably under paid.  I get it.  I just do know why she has to call me so much.  Brianna knew that Miles would cry if  a baby was crying.  She would let him cry and try to calm the other crying child.  She would not call me unless Miles was hurting himself (throwing himself to the ground) or a danger to other kids (throwing toys). That only happened a few times.  I miss that.

something new

We don't have and iPad or tablet of any sort.  Andrew and I  have thought about getting one for Miles, however we did not want to buy one if Miles did not use it. Avery would use it, but we would mostly get it for a learning tool for Miles. 

I asked his teachers at school if he used the one they have in the classroom. Their reply was "Not really."  Later when I spent more time in the classroom I notice Miles mostly avoided the iPad because the other 3 kids in his class would fight over it.  He thought it was best to avoid that and I can't blame him.

Today in his weekly speech therapy the iPad was brought out. Miles LOVED it.  No surprise he already knows how to navigate it... I have no idea!  He loved the piano and drum apps!  Next his therapist tried an app that asked Miles to pick an item from a bunch of pictures.  This one was kind of funny because Miles would pick the coolest looking picture, like the candy apple, instead of the item prompted like vacuum.

This is where I am going to cry.  She then had Miles do one that would say "find the letter ____".  She did 5 or 6 of them with Miles (before he pushed the 'quit' button) and he got all of them right.  I have never seen him do this.  Since he does not say much it is hard to know how much he knows sometimes.  I know what some of you are thinking, why don't ask him that stuff with what I have at home?  He does not want to do that stuff with me and I am not going to force him.  He would rather do that stuff with therapists, teachers and I suppose now maybe the iPad.  He also knew the number 4 and did the number 4 two different times.  I wished he would not have pushed the quit button because I would have loved to know how much he does know!