Tuesday, December 31, 2013

Last Day of 2013

2013 has been a busy year. It kind of feels like it has been two different years... or even more.  It has not been a bad year nor has it been a super awesome year.  I'm ready for the year to be over and yet I would be ok if it wasn't.

I'd say the best thing about this year for me is that I have been trying to take better care of myself.  I can't always say I am doing my best at doing so.  So in 2014 I will continue to improve my goal... better late than never and definitely better than not at all.  I have also enjoyed being a substitute teacher and I am excited to continue to sub the rest of this school year and maybe the next. 

Miles has continued to grow and change.  Some days he growth seems to be in leaps and bounds and sometimes barely at all.  He is still happy and healthy and it has been a good thing that we decided to seek an ASD diagnosis.  For the most part friends and family have been very supportive... sometimes even overly.  For most of us the diagnosis means nothing has change and for other he means a lot different.  The most important thing I have learned is how important Autism awareness really is.  I forget that many people don't really know what Autism is or have a thought about what it is.

Miles really likes his new therapy.  I'm not sure how exactly, but therapy helped him make some changes.  I can't even explain it but I have had people who know him and not know he is in therapy comment on how he has changed... growing!   He has definitely been more vocal lately.  Mostly sounds but I have heard some words and phrases.  The other day I head him say "Happy Birthday!"  not sure to whom but it was pretty cool.

I still can't believe Avery is 6! He is such a smart boy.  Sometimes I can't even believe how smart he is really.  He loves Kindergarten and he loves learning.  He is learning how to read and write and I think that is the neatest thing.  I can tell he is one of those type of people who knows things without really knowing how they know.  He can just look at it a know... goes for math too.  Some days I think he is my future actor, some days I think he would be a good teacher, but most of all I know he could do anything.  Some days I swear he has a teenagers attitude... these are the days I don't know what to do with him... especially with all his smarts that come along with it!   He is a caring little dude.


Andrew is still continuing to improve.  It is hard to believe that the accident was 3 1/2 year ago.  I think he is ready to get back to work, but he also enjoys being able to take care of his family.  I think he will only keep improving.  So much has happened since then many things are no longer noticeable while other things continue to stay.  On the 3rd he will be celebrating another birthday that I am thankful he is around for.  We celebrated our 10 year wedding anniversary and I am so happy that I have found a great guy to be with. 

Thursday, December 19, 2013

Peaks and valleys

First I wanted to say that we got the results of Miles' genetic tests yesterday.  All the tests came back negative, meaning that they did not find any hidden genetic reasons for Miles to have Autism.


So yesterday Miles had an off day or something.  He had one big meltdown in therapy, but had an awesome day in school.  We have been so busy the last week we had not had time to do a big grocery trip so we decided to go out to dinner. Miles usually does not have a problem going out to eat, he knows at restaurants food comes to your table.  We make sure if he is really hungry that he gets something small right away and there is no problem.

Last night we decided to go to Old Chicagos for pizza.  We don't go there often so we thought it would be a nice change... and Avery wanted pizza anyway.  Miles was a little cranky when we got into the car and we figured he just wanted food.  When we got to the restaurant we were seated right away and we ordered quickly but Miles would not sit down.  I did not care if he sat he could stand by me and he was fine.  Then he started crying.  It almost seemed like it was for no reason at all.  I tried to console him and he just started crying louder.  I walked him to the front lobby of the restaurant and he was fine. We sat there for a little bit and then the fires we ordered him were ready.  So I walked back to the table and he started screaming again.  He did not want the fries.  I tried to keep clam and offered him fries.  I walked back to the lobby with a few fries and Miles.  I thought if he calmed and then ate the fries he would want more and then he would return to the table.  Doing this only made him cry in the lobby.  I tried the table again... nope, the lobby... nope, outside... yes... until I would not take him to the car.

I tried taking him to the restroom.  He is sort of getting into potty training so I thought maybe he had to go... or did go in his pull-up, because that can make him mad.  He would not sit and he was not wet.  He did not want his pants down at all.  Now he is crying in the bathroom.  Back at the table the food is there.  At this point I try to give Miles a pepperoni... nope.  Then the manager comes out and asks if we want to-go boxes..................... but mentions she does not want us to leave. Great!

Andrew takes Miles to the bathroom and also has no luck.  The lady next to me asks me "how old are your boys?" I tell her and then she says to her 11-month-old baby (I asked her back) "she what I get to look forward to in a few years."  To that I reply "Oh does your son have Autism?"  Yeah that is a quick way to get her to shut up... and she says something about we all have rough days.

The worst part was a lady at different table. She was with a large group of people, probably the mom/grandma.  She would glare at me and then type on her phone.  It may not have been about Miles but it probably was.  She could not stop looking and glaring and messing with her phone.

Then I semi-lost the battle and ended up  with Miles in the car... both of us bawling our eyes out.

The thing that drove me the most crazy is that I know people around us probably just wanted us to leave. What they don't understand is that it is exactly like that kids throwing a tantrum because they want candy in the grocery store.  If the parents give in (***cringe***) then the kid learns that EVERY TIME they have a tantrum at the store their mom will give them candy to shut them up.  If I leave the restaurant, I have just given Miles his candy.  He would then think EVERY TIME he has a tantrum we will leave the restaurant and go home.  Therefore I went to the car with him, let him cry in there with me.  We did not go home yet, but we did not stay.



Tuesday, November 26, 2013

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. 

Sunday, November 24, 2013

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. 

Sunday, September 1, 2013

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.

Thursday, August 29, 2013

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.

Saturday, August 24, 2013

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

Saturday, August 3, 2013

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.

Friday, August 2, 2013

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!

Tuesday, July 30, 2013

The day I thought I was going to kill my cat

I did think my next blog post was going to be about Sensory Miles.  However, today was something crazy.

Many of you know my cat Ziggy is not doing well.  I came to terms with myself that I needed to assess Ziggy's quality of life.  The poor thing had been locked in our laundry room until that room really smelled and I moved him to the bathroom in the basement.  That is not the life I would like to live.  I mean I have been taking him outside in the back yard as much as I can, but I can't let him walk around the house because he seems to be peeing everywhere.

Saturday I wanted to get him to the vet... to tell them Ziggy's time is up.  It felt painful but they could not get him in until Tuesday... today.  Today I gave Ziggy extra love and cuddles and the whole time I had to keep myself from crying.  I kept having to remind myself that it would be better for him just to go then to keep him and he keep getting worse.  Of course they could not get him in until 4:00 pm so the day had to start out like normal.

The boys played outside in their swimming pool and I took Ziggy out for fresh air.  He looked so sad and pathetic.  His fur is all knotted because he does not care to clean himself.  His underside is really bad because I was having to pull him out from under my bed by his scruff and the made his fur more knotted. I noticed he could barely walk and the confirmed to me that it was time.

I had to get the boys in the house and dressed to go grocery shopping.  Strangely Avery asked why I was not getting a 'car cart'.  "Why, are you going to sit in one?" I asked him.  "I'm tired" he replied.  So he crammed himself into the car with Miles.  Miles kept hugging Avery into a headlock, therefor many people in the store found them amusing.

We got home in time for me to put the groceries away and get the cat packed up in his carrier to go to the vet.  On my way to the vet I had the radio on.  The song "Stay" by Rihanna ( video and song here) was playing and then started to get overplayed by another signal playing some somber classical cello music.  The music then when I thought the music was coming back it was really "Try" by Pink. (song here).  Then the music changed back into cello, then Stay, then Try and kept switching.  Don't ask me why I did not change the station or turn it off because I don't know.  Instead I said out loud. "Cut it out!  I am not in the mood! Pick a song... one song... and stick with it!!!!" and then the music switched to Stay and stayed.

At the vet:  In walk a new doctor that does not know Ziggy.  All he knows is what he has read on his charts. The funny thing about bringing Ziggy to the vet is that they always have a hunch what is wrong with him. and hunched on how to treat him.  This new guy didn't even let me get in that I wanted to end the poor things life.  He talked about getting him retested with an expensive test for his thyroid, and how if it is, and he BET ME that HE WOULD BE RIGHT, that it would be easy to treat.  He kept saying how Ziggy is too young to be sick and he would not really let me say much.  I ended up getting Ziggy more food and more of the steroid medication he has been taking and left with my cat.

I had planned on the fact that I would be crying when I left for home... but not because I was taking the cat back home with me.  I had no idea what was happening really.  I am still a bit confused about it all.  Anyway on the way home it started raining, it was sunny and pouring rain at the same time.  Then there would be no rain and you could see a head that you were going to drive into another down pour.  It was strange,

Sorry how long this is. ... I was thinking the next part I was going to write about going to the Chilson Center could be a whole different post.  So I think I will spare you and write the rest later.

Monday, July 29, 2013

Sensory Avery

I joke that while in the womb Avery picked what he wanted and left the rest for Miles.  No one has to tell me that all children are different but sensory need is one of the things that sets my children apart.  I don't think that Avery will ever be diagnosed with something like Sensory Processing Disorder because he has learned to cope with most of his sensory issues and they don't affect his everyday life like children who are diagnosed with SPD.

Avery could be classified as an "avoider" when it comes to sensory needs.  His avoider tendencies have always stood out to me --- maybe because I don't fit that.  When Miles' therapists where pointing out Miles seeking sensory input, I never really noticed because I related to what Miles was doing.  I could not relate to Avery's avoidance of sensory input. 


The first thing I noticed about baby Avery was that he did not want his face covered with a blanket.  This meant not even over his infant carrier.  Since he was born in October and the cold months were just starting, you had better believe that  we heard multiple comments about covering our baby.  I first thought maybe he just got too hot, or wanted to see the world.  Then one day I went out to lunch with my best friend's dad.  He worked near my house and he wanted to see Avery.  When I dropped him back off at work Avery was sleeping.  I started driving again and Avery started screaming like something was murdering him.  I was almost home so I did not pull over.  When I got home I found Avery's blanket was placed over the car seat and over his face.  Now it was not right on his face, but he was under the blanket.

Because Avery did not like to have his head covered I ended up bottle feeding him along with breast feeding him.  It also worked out because he was a pretty hungry baby!  If we were not at home I would most likely bottle feed because I wanted to cover up in public and Avery would not nurse under a blanket... no matter how hungry he was.  Also to back track I forgot to mention that Avery did not enjoy being swaddled for more than a few minutes.

To go in progression of age I will talk about Avery's crawling.  I did not think about this as sensory avoidance until recently.  Avery for the most part did not crawl.   I have some videos where he is sort of scooting but he is trying to avoid putting his knees on the ground. Both knees were never on the ground at the same time.  He also did not like 'tummy time' as an infant.

Until he could walk he also did not like being in the grass.  Once he could walk he did not care.

Recently I checked off a SPD screening checklist for both kids.  Not to make this post long I will briefly state the other things I marked off for Avery on the list. Some of the thing Avery will tolerate now, for example brushing, washing and cutting his hair.  It used to take 3 trips to the hair place and sometimes it would still end up not finished.  Somewhere I have a picture. 

Avery is not really a cuddly kid.  It is not that he is not affectionate but he prefers not to cuddle for long periods of time... UNLESS YOU ARE HIS NANA!  He could cuddle with Nana all day, I have always been a little jealous.

Avery has become a little more tolerant of messy play and getting his hands messy.  I think now that he can go wash his hands himself I just don't hear the complaint anymore.  He would even freak out if Miles was messy too, but I think he is used to that.  This is also why he avoids sauce of most kinds unless it is cheese or chocolate.

The one place where Avery is a seeker and not an avoider is the fact that he has to jump on EVERYTHING and still at ave 5.5 needs to put things in his mouth. 

After Avery got too big to sit in a bucket swing he does not like swinging.  He wants to but he does not.  He does not like to be tipped upside-down, unless he does it to himself on the couch and has rarely been a risk taker.

Avery gets startled by loud sounds. Before he got used to his Uncle Phil, just Phil's loud laugh would make him cry.  Avery covers his ears when he is scared.  He is more afraid of a loud sound than seeing something scary.  If the sound is unexpected, not even loud it can freak him out.  He still does not like the sound of fireworks or thunder.  

A few other things I marked off for Avery are: needs directions repeated often, says 'what?' frequently, has difficulty locating items among other items.

That is my Avery and how he avoids sensory. 

Thursday, July 18, 2013

I have these 2 songs in my head a lot lately so I thought I would share.


#1 "Somewhere Only We Know" - KEANE


I walked across an empty land
I knew the pathway like the back of my hand
I felt the earth beneath my feet
Sat by the river and it made me complete

Oh simple thing where have you gone?
I'm getting old and I need something to rely on
So tell me when you're gonna let me in
I'm getting tired and I need somewhere to begin

I came across a fallen tree
I felt the branches of it looking at me
Is this the place we used to love?
Is this the place that I've been dreaming of?

Oh simple thing where have you gone?
I'm getting old and I need something to rely on
So tell me when you're gonna let me in
I'm getting tired and I need somewhere to begin

And if you have a minute why don't we go
Talk about it somewhere only we know?
This could be the end of everything
So why don't we go
Somewhere only we know?
Somewhere only we know?

Oh simple thing where have you gone?
I'm getting old and I need something to rely on
So tell me when you're gonna let me in
I'm getting tired and I need somewhere to begin

And if you have a minute why don't we go
Talk about it somewhere only we know?
This could be the end of everything
So why don't we go?
So why don't we go?

Ah-ah-ah
Ah-ah-ah

This could be the end of everything
So why don't we go
Somewhere only we know?
Somewhere only we know?
Somewhere only we know? 
 


#2"Carry On" - FUN.

Well I woke up to the sound of silence
And cries were cutting like knives in a fist fight
And I found you with a bottle of wine
Your head in the curtains
And heart like the Fourth of July

You swore and said,
"We are not,
We are not shining stars."
This I know,
I never said we are

Though I've never been through hell like that
I've closed enough windows to know you can never look back

If you're lost and alone
Or you're sinking like a stone.
Carry on.
May your past be the sound
Of your feet upon the ground.
Carry on.

Carry on, carry on

So I met up with some friends at the edge of the night
At a bar off 75.
And we talked and talked about how our parents will die,
All our neighbours and wives.

But I like to think I can cheat it all
To make up for the times I've been cheated on.
And it's nice to know when I was left for dead
I was found and now I don't roam these streets,
I am not the ghost you are to me.

If you're lost and alone
Or you're sinking like a stone.
Carry on.
May your past be the sound
Of your feet upon the ground.
Carry on.

Whoa!
My head is on fire but my legs are fine.
After all they are mine.
Lay your clothes down on the floor,
Close the door, hold the phone,
Show me how no one’s ever gonna stop us tonight.

'Cause here we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we’re miles away
Sun will come
We will find our way home

If you're lost and alone
Or you're sinking like a stone.
Carry on.
May your past be the sound
Of your feet upon the ground.
Carry on.

Oooh.
Oooh.
Oooh.
Oooh.

(No one's ever gonna stop us tonight)
(No one's ever, no one's ever gonna stop, no one's ever gonna stop us tonight)
(No one's ever, no one's ever gonna stop, no one's ever gonna stop, no one's ever gonna stop us tonight) 
 

Friday, July 12, 2013

Surprise Miles!!!

Today we went to a playground that Avery had been asking to go to all week.  The playground has cool play equipment and a 'spray ground' area for the kids to get wet. 

At first Miles wanted to swing, then chase a boy on a bicycle and then play in the sandbox.  Once at the sand box I am surprised to see Miles sit down in the middle of a bunch of other kids sitting in the sand.  A typical scene is Miles sitting off to the side watching the other kids play together.  He is sitting right next to a girl wearing a Cindrella dress-up gown.  This girl has to be about 7 or 8 years old.  She is pouring sand into some sort of cone/bucket/not really sure and I see Miles with a hand full of sand and the girl says "HEEEYYYYY!!!!" From my angle I am not really sure but it looked like he was putting sand IN the thing.  I'm thinking either way if he was putting sand in or taking it out he was 'playing' with her and I was impressed. 

After she yells at him he stops and then he flipped over sprawled in the sand on his belly.  Maybe I was not paying attention, but I think I was, but the girl kept telling Miles to "stop it."  I was not sure what he was 'doing to her' but secretly I was hoping he was kicking up sand on her princess gown, she was covered in sand anyway.  If she did not want to be maybe she should not have been wearing the dress in the sandbox.  For some reason she kept making fun of him to her friends who seemed just to be ignoring her anyway. 

After Miles was covered in sand I took him to the water part to hose off.  This is where he stayed for the remainder of the park visit.  Miles is a little bit of a water hog though.  Most kids just kind of stay out of the way.  This is surprise number two.  There was a little itty bitty girl would was checking out the same water fountain as Miles.  Miles reached out and PUSHED the little girl down.  I have never seen him purposely push another child that was not his big brother!  When she fell over and cried he did look upset and I put him in a timeout and he sat there.  A small part of me was happy because, well that is what kids do. I wished it was not a little bitty girl though and I wished it did not make Miles seem like a monster child.  I was seriously shocked because that was so not like him.  The picture below is a few minutes before the push and the little girl in the white hat is the little girl. 

Thursday, July 11, 2013

The quest for the ice cream truck

The things we do for our children....

Avery has always been a passionate and sensitive boy.  I think as he gets older these qualities will transfer to something great.  As for now it might seem trivial to people who are not Avery.  Today we heard the ice cream truck and I told him we could get something if it drove by.  Finding the truck now became Avery's passion.

We were playing in the backyard at the time and we could hear the music playing... somewhere.  Avery walked to the end of the street a said he thought he saw it... nothing.  We could hear it very clearly but it was nowhere.  I thought it could be in the neighborhood across the street.  We went back to the house and got the double stroller (the kids have bare feet) and decided to head over.  We could hear it louder and yet it seemed to be getting farther away.  I RAN down a path to one of the main roads... and the music was gone.  

I told Avery we had Popsicles at home, but at this point he was ready to cry.  "We have to find the ice cream truck!!!!"  Ok, ok... The music picked up again and there we were walking down roads in the other neighborhood.  It was close to 100 degrees out and here I was pushing two 40lb kids in a double stroller.   We would hear the music then it would be gone.  Every time Avery would ask if I could hear it I would say "I don't think so, maybe, no, maybe, yes."  I was thinking that by then we had become delirious with the music stuck playing over and over in our heads.

Eventually I say to Avery. "I'm sorry but I don't think we will find it.  You can have something from home or maybe.... "  NO WAY THERE WAS THE TRUCK!!!! It's music was no longer playing but there it was!  Avery waves frantically at the ice cream man.  It was like we had just been found dieing of thirst in the desert.  The man pulls over and thank goodness I can get some ice cream.   

Avery gets this big thing shaped like Sponge Bob and Miles gets a Bomb-pop.  Finally we start to head home.  I have to tell Avery to eat his precious Sponge Bob before it melts or Miles takes a bite... and then Miles takes a bite.  Avery wanted to show his daddy and I assure him that Daddy knows what Sponge Bob looks like and that I am sure he could picture what the ice cream looks like. 

Finally home! We are right in front of the house and the $%^& ice cream truck (with music) drives by.  Of course he does.  I figure though that if we had not stopped him he probably would have just moved to another area in town.  

Between this event and then working out at the rec center I have put 10,500 steps on my pedometer... so maybe I need to chase ice cream trucks more often. 

The list

I wish I still had the list they gave me when they mentioned flags for Autism.  I sat there reading it over and over.  I finally got out two highlighter markers and started marking the list.  When I was done I had more symptoms marked for 4-year-old Avery than I did for almost 3-year-old Miles.  The next time I saw the developmental educator who came to see Miles I told her this and all she could say was "Well clearly Avery does not have Autism."  


I think most to all of those things I had marked for Avery have since vanished.  However then it made me that much more annoyed with what they were saying.


Again I wish I still had that list.  I Googled for it and the list no longer looks the same and depending on what you are reading the signs and symptoms change.  I wish I could remember all the things I marked for Avery and the few things I marked for Miles.  Also I all the things that they said Miles did or didn't do and then he started doing... like eye contact.    

Wednesday, July 10, 2013

Don't know my story? Feel free to ask not judge.

Other conversations have sparked this and yet it is something I think about often.

Now that I get out there into the world and now that my kids are in school I often get the question/ response "How come you have not gotten a diagnosis yet?"  I want to say "Because I haven't OK."

For the most part I am not in hurry as I have mentioned before.  As long as Miles gets a diagnosis before Kindergarten I am fine... and this is only because it determines what services he can get in school and perhaps outside of school.


So for those of you who don't know it or just want to read it anyway here it is:  Miles was an easy baby.  I was scared he would not be because Avery was and people kept telling me that if I had one easy baby there was no way Miles was going to be an easy baby... but he was.  He was always happy and easy going except when he was hungry and you can ask his Nana about how he would not take a bottle...    He laughed at his brother, he wanted to move quickly to keep up with him too.  Unlike Avery he actually crawled and like Avery was an early walker.  Because of Avery he heard and or watched the movie Cars everyday of his life for the first year but he was always excited when it came on.  He was always on the go, but so was Avery.  

He was always quite, unless he was upset, laughing or excited.  When he was not talking or really even babbling (he cooed a lot though) we were not concerned and neither was the pediatrician because like Avery, Miles was hitting all the other milestones early except for communication.  Avery started talking in sentences at age 2.

At age 2, Miles was not talking yet.  The pediatrician referred me to child-find for my county but still said he was not too concerned with anything.  This is where parents sometimes get mad a the pediatrician for dismissing things, I am not mad nor did I think he was blowing things off.  Here is the other things my childrens' pediatrician knew about my children:


I was in the office every couple months for checkups between the two kids.  The pediatrician was well aware of my family's situation and how Andrew was in an accident.  He knew that my family was under distress and trauma and he knew it was hard to tell how it translated to my children.  Miles was only 14 months at the time of the accident.  He just wanted to watch and see how things woudl progress.

Miles had a harder time adjusting to apartment living and his daddy being home than anyone else.  We were all happy but it was confusing to Miles.  He was just turning 2.  It has taken him 2 years (plus the year Andrew was gone)  to become his daddy's buddy again.  Since he has gained that back I have seen a burst of growth in Miles.

On to Foothills Gateway he had therapy through when he was 2.  At the end of his time with them they brought up 'flags of Austism' and then even though they agreed he did not have many of them anymore the refused to remove them from the report.  Some of it I thought was because Miles just did not like them and he just wanted to avoid them. They also said to me that because of the growth they saw he may grow out of more and testing was up to us.  They also told me that they might not want to diagnose him until he was at least 4 in that case.

So there it is.  We are now on a wait list for testing.

Tuesday, July 9, 2013

I understand the need but in most instances it is not needed.

Label label label.  I understand the need for labels, I attach them tho things, to myself, to others... we all do.

Here is my problems though, I don't want the general public to give my child the diagnosis of Autism.  If specialists, doctors, therapists, and the likes give him one for treatment purpose I am fine with that.  If the school needs a diagnosis for IEP and school help they can have it.  At home he does not need that. out in public (at least now) he does not need that. 

Acceptable home labels: Miles, "My-my", Monkey, stinker, cutie pie, little boy, child, and his astrological sign in Aries.  

Today I had a guy at the Chilson (in the hot tub) ask me if Miles was Autistic.  I don't mind the asking, I just told him he was on a wait list for testing.  He proceeds to tell me about his nephew who is suspected to have Autism and about how hard it must be.  He tells me how his nephew does not show emotion or want anything to do with others.  He tells me that how Miles is acting reminds him of his nephew....

Thanks guy... I guess... 

Still waiting and some days I think that is what they are going to say.  Other days I think that idea is far away.  Either way he is my sweet boy and I would not change anything about him.  I just want to help him be his best... as I do with any child.


 

Tuesday, March 19, 2013

My baby will be 4!

   In a few days my 'baby' will be 4-years-old.  It is hard to imagine and yet easy to remember how little he used to be.  I have seen so much developmental growth in him the last few weeks.  I have seen him do many things I have never seen him do and it makes him seem more like a 'normal' kid.

    Normal.  That is the thing.  I think about the term 'typical development' often because the term is often used when conversation is about Miles... more like the fact that he does not have typical development compared to his peers.  I often wonder if his delay was not in speech and communication if his quirks and other things he does would go unnoticed.  Since communication is important to us as a human race it marks Miles as odd in a way.  Since he is now marked as such all parts of his development is followed closely as well.  I don't really mind since I know the monitors mean well and they want Miles to be the best Miles he can be.  I still wonder sometimes.

 My point is this:  Miles has some sensory needs.  His sensory needs are met by putting things in his mouth.  Because he has this need there is concern about oral sensory needs, Miles perhaps has Autism.  I as his mother do not see a problem with his sesory needs... as a child I liked to chew on my barbies and ponies and put the baby doll bottles in my mouth. I chewed on my pencils and pens and even ate my erasers.... but either no one noticed because I did not have 'problems' no one cared.  Miles likes to chew rubbery toys the best and I know sometimes his knows better because I appear and his takes a toy car tire out of his mouth and hands it to me like I caught him.  Avery also chews on things and no one seems to care. 

I spend a lot of time at the preschool in both boys' classes.  Avery is the oldest kid in his class of 15 students and Miles is the youngest of his class of 4.  The boys are 17 months apart and all but 1 of the children in both classes combined have their birthdays between my kids' birthdays.  All children are different, however I do find myself comparing children, and sometimes I am glad that Miles' problems are not like some of the other kids.  Sometimes it is also nice to see that Miles seems to be just like some of the other kids as well. 

Miles may not have a verbal conversation with me, but he is a better listener than Avery by far.  When Avery was 4 and he started walking away from me and I told him to come back to where I was, I would have to get 'angry' before he would come back.  I have to tell Miles once or twice and he comes back.  He does not listen when I tell him not to climb up on things... but to me that makes him a normal kid.  Miles is a good sharer, he will not take a toy from you, he will make a trade for a toy he wants, wait his turn, and give you a toy.  He is generally happy, curious, observer and friendly.

I would not ask for anything different.  

Monday, February 4, 2013

 I wanted to share my mom's facebook post with every one.  I love you mom with all my heart.
 
Written by Nanina Hawk (my mom)
Always being ahead of my time 13 years ago on Feb 4th 2000 I didn't know February would become wear red for women. It make sense since it is the month for hearts. I also didn't know I had already had a minor heart attack December 27, 1999. Or that I was having a massive heart attack the morning of Feb 4th. A lot of things have changed in those 13 years. Most of all knowledge, that symptoms for women can be and are different then men. I was 39 years old, not over weight, and no clinician would just look at me and think heart attack. It was missed, twice, and sadly because time is of the essence in a heart attack, part of my lower heart died that day.

I can still remember after four days in the hospital going home and trying to unload the dishwasher. Putting one plate away having to sit down. Thinking to myself, if this is going to be my life I don't want to live this way. People around me not understanding, because I looked pretty normal on the outside. But I would never be the same again.

I did start to feel better, it took about year, after six weeks I went back to work and by Friday I would be wiped out for the weekends. Blood thinners, weekly blood test, anxiety, is this pain to be ignored or is it serious. Walking into unknown waters, this medication they give you slows down your heart, zaps your energy. That pain is your heart creating scar tissue. You now have depression, is it any wonder?

In the first year, a woman thanked me because she was having abnormal symptoms and I told her go in and have them to an EKG. She was having a heart attack and received early treatment with no damage to her heart. Although I also told many to do the same and they weren't.

The first wear red for women day fell on Feb 4, 2003 and you would have thought they did it just for me. Three years post heart attack for me. In those three years everyone had been talking about women and heart attacks, I thought if only, they had been before. It could have saved my heart from damage. Then I realized I was a part of all the women before who helped bring this to the forefront, to bring this to the news. That is why it is important to me. If I can't have the energy to run and do the things I want to do with my grandchildren, or the energy somedays just to do what I want. At least I know I helped get it out there.

When I think of what I would have missed as in graduation, weddings, grandchildren and just love. I'm so grateful for the outcome 13 years ago. I have appreciated everyday of those 13 years, when I look back. How some things are better to let go of they aren't as important as you think. Others you hold near and dear to heart because they are more important than you will ever know. Happy number 13 to me today!