Santa and Evan

Yes he did! He sat on Santas lap - he was quite aprehensive about it to begin with, but he warmed up to the idea when he figured out the whole present bit. In fact at the second party, he tried to take other peoples turns... I will get some pictures posted ASAP... whatever that means-- probably Act Swiftly Awesome Pachyderm (think Horton Hears a Who).

Today and Tomorrow

I have decided that having a diagnosis doesn't make anything easier. I still have to subject my baby to more testing to put him into the preschool and I still have to find some way to get him much needed speech therapy. In fact having a diagnosis doesn't do much but make me want to cry. As mentioned previously no one wants to have their child labeled. I am sad.

Kudos to my family for taking such fast action to support Clays Bill. I am so flattered they would do this for us, in spite of the fact that it may not pass in time to do much good for Evan. It is a step in the right direction I guess.

Evan and his IQ

So we all now my baby is pretty smart - well he was testing out of things at his psych visit at the five and six year old level. Super job Bambino. But he still falls on the Autism Spectrum. They (being the Doctors) have determined it is PDD NOS - Pervasive Development Disorder (not otherwise specified).

Contact your Senator!!!!!!

Sample letter to your legislator for the passing of Clay's Bill. Thank you everyone for being so supportive about this. It is so nice to know that people really do care about children and want them to have as much of an opportunity to succeed as possible.

If you need help finding your senate district, please email me at ashley_n_raines@yahoo.com and I will find out where you need to send your letter.


Dear Senator ______________
I am writing to request you take immediate action to support and co-sponsor Clay's Bill as presented by Senator Howard Stephenson. This bill would require private health insurance companies to approve payment of Applied Behavioral Analysis and other therapy claims for children with Autistic Specturm Disorder.
As a parent/neighbor/family member etc. to a child diagnosed with Autistic Spectrum Disorder, I understand the urgent need for this legislation. The therapy available to the majority of these children is limited by the cost to their families. Some children are unabel to receive proven treatments for Autism Spectrum Disorders due to the high costs.
Passing Clays bill will allow better and more therapy to autistic children. More families will find speech, occupational and physical therapy to be affordable with the cost share of their insurance companies.
Thank you for your time and thank you very much for your suppoprt of our children who need your attention. If you need additional information regarding Clay's Bill, please contact Senator Howard Stephson.
Sincerely
Include your name, address, phone number and email – the more contact information you leave, the better chance you will receive something back.

Utah Autism Coalition

http://www.utautismcoalition.blogspot.com/

Tomorrow, Tomorrow, I love you, Tomorrow

You can start singing the song from Annie if you would like... I will wait... Done Waiting! So tomorrow is when I take my boo bear to the developmental pediatrician to see where we go from here. Most of me is actually excited to get something moving - the rest of me is scared to death. You never want your child to be the one with the 'label'. Well I take that back, I would love him to be labeled lovable, adorable, smart, funny, cute - you know all the good things. Special Needs is not something I want for my child. I know that by thinking this way, I am helping to perpetuate the negative connotations, but I cant help it. We all made fun of those kids in Elementary and then we felt bad in High School, so we joined the buddies programs to help Special Needs kids adjust. Now as parents, we try to teach our kids not to stare, but can't help doing it ourselves. Point of todays babbling is I just want him to be okay. I can deal with a speech delay, I don't know that I can deal with much more.....

Update...

So I guess it is time for a happier update - Evan has appointments in December and January. Which is much sooner that I had expected - hooray for cancellations!! He has been talking more (pretty much because he is a smart boy and has figured out I am going to be taking him to the doctor if he doesn’t start talking more). I have got the tentative ok to change my schedule up a bit to accommodate therapy and doctor appointments. I am still with the plan that come tax time, Jer is going to be the money making machine and I will be able to really focus on just Evan. My Scentsy business is going very well (check it out www.scentsy.com/12204) . I have really enjoyed meeting people beyond my family and friends. I have a few parties lined up for December and first quarter, so I am happy with it. Evan loves preschool with Miss 'Anina' and I believe auntie cassie is very entertained between the two little nuggets. Jer has promised to take me far away to Disneyland next year (yeah!!!!) and I think Evan will love it! Well that is all I know… I'll let you know if something else pops up.

My Bambino and Life

So I have never felt so incredibly useless as I did Friday. I took Evan to a speech therapy consultation and the hold up this book and ask about a billion questions like "show me the doll, which one is blue, where are the shoes, which block is on the box". Well what we found out is that he is speaking/comprehending on a two year to two and a half year level. I was seriously bawling in the office- I was perfectly aware my child was behind, just not that far. I was very ready to be told that there were a billion options to help him and that I needed to call so many places and coordinate care and that everything would be ok. Well nope - not quite. See my insurance will cover the diagnostic test to see if he is at level, but will not cover any therapy for a delayed child. And to top it all off, the Speech Therapist - Kevin- mentions Autism and then focuses on getting Evan screened for it. I about died, not because I am afraid of what we may find out, or even that my child may be labeled for the rest of his life with something that still carries a horrible stigmastism, but rather because I asked Evans doctor about this in MARCH!!!!!! I was told to wait another six months. So I waited, but when I called the MD office in September I was told they would call me back in a week or so with the referral (eventually being speech and audiology testing) - Well the amazing staff called the wrong number, and didn't bother to look into the phone numbers at all and quit trying to get ahold of me. So it was another two weeks when I called back and they attempted to give me the third degree about keeping my number updated when I need to have a call returned. As you may guess that did not go over so well with me. Now I called the Doctor to get a referral to get an Autism check and they would like to wait for the written reports to come in and they will get back to me sometime next week. So I hang up - bawling again and decide I should call my insurance to see if there is a separate deductible for this kind of therapy (because kids you should always check with your INSURANCE!!!!) Glad I did - they dont cover it unless there is an accident or illness that took his speech away. I asked if they would cover it if we had an autism diagnosis and get this - THEY DONT COVER AUTISM --- The reason for this you ask???? BECAUSE THERE IS NO CURE!!!!!!!!! WTF WTF WTF WTF WTF AND WTF - (for those of you who dont know, that stands for Where is The Fax and I am still very angry) Really now, AIDS shouldnt be covered, My Bipolar Disorder shouldnt be covered - or really any mental illness, some Cancer shouldnt be covered - and your insurance really doesnt give a damn about you or anyone else.

So now we wait (and cry) some more...

My Bambino

You know - I dont care that my baby is not the most verbal thing in the whole world. He is the sweetest little thing always wondering where his momma is and if i have a 'd-ache'. Jer has promised me that regardless of our financial situation, after tax time, I can stay home with the bambino!!!!!! Which I decided we will learn how to read - Mary has offered to teach him how to watch Days of Our Lives (tried to talk her into horse back riding, but it was a no go) - I am going to let grandma Betty teach him how to cook and then he will be a well rounded child. Now I need to remember to get little chairs for his little bottom...

Audiology

So I wanted to make an appointment with a speech therapist as my bear is not as verbal as we would like him to be. Well of course they want to rule out things like Deafness before they try to get my child to mimic their language... so off we go to the Audiologist. Well my rock star child hears just fine! It really is amazing what modern medicine practices can do. First they put probes in his ears to make sure his drums are reacting the way they should to different volumes and pitches, then came the fun part. They put us (E bear in my lap) in a tiny sound booth and put headphones on him. Then they would talk to him thru one side and flip on a monitor when he looked to the right or the left. Well one time the left monitor kicked on and there were dancing hippos - Evan thought that was hysterical. So they turned off the monitor and tried to get him to look right - He did turn, but only to say "no! hippos please" and turn back to the left to wait patiently.

I'll take this home...

So Ev is not the worlds most verbal child, but he is trying so hard. Last week I was picking up from my sissy Cassie's house when Evan dragged out Alyssa Lou's monster teddy bear. Not kidding when I say that this thing is bigger than my child (seriously and he is not a small child). He is dragging said bear down the hall and Lys is following explaining to Evan 'dat is my (her) bear' and looking like she is going to cry. Fast Baby Mothers Intervention. we get everyone to be quite and begin to explain to Lys that Ev just wants to play with it for a minute to which my child challenges 'I'll dus take dis home'. I think Cas and I stared at each other for a full minute before we bust up laughing. Of all the things to say, my E Bear chooses something that will clearly upset his poor cousin and make her feel bad. Well in the end, we got the bear away from the children and scooted out of the house bear-less.

Blog About Not Being Able to Blog About the Fire Station

Yep - that is what cassie told me to do, so I am - Last week Evans preschool was supposed to go to the fire station to see the fire truck. Well we got there and sat down and then they got a call - so away they went. It was really sad - I dont know that most of the kids really understood they just had the worst field trip in the whole world, but I sure did! I couldnt take off this Wednesday to go with them, so I was super sad. Cassie will be taking the children tomorrow - I hope they behave themselves!

Day Out With Thomas

You know when you tell children to smile and they just pull the cheesiest thing?

Well I think My baby does a really fabulous cheeser!

This year we went to the 'Day Out with Thomas'. Which was a very interesting experience for both me and Evan. I think he enjoyed most of it. He loved the train ride with the girls. They had the 'conductor' sit with them - which blew my mind that Evan did not run screaming (after he looked at me and said in the most informative voice he has 'driver'. As if I didn't watch enought Thomas movies to know this already.

After the train ride there was this tiny hay maze. These kids loved it. They ran and ran. Mae never wanted to leave - Its a good thing we tried for pictures first.

Ev has never really been one for pictures. It wasnt really a suprise to me that he became the hay block rebel...

Overall, I think it went great until he found the train tent. Then it fell apart. Grandma Susan had to get him a train (for a rape me price). And it still didnt work. So Evan and I left as many many many other parents and children did- Pick them up kicking and screaming and making empty threats about never being able to go anywhere or do anything with Thomas again! Which in our case ended when we got in the car and turned on the Thomas movie.

SOOOOO BEHIND.....

Mine, not yours. So today at work, I wandered over to the other area (which is now punishable by death) and learned something very interesting from my snake charming horse riding cowgirl and her side kick the twelve year old. THEY BLOG!!!! Now my sister has been doing this for a while- but I never felt bad for only posting like two times in my whole life because I would use the excuse that I didnt have time. But that has all gone out the window. If the Mar-Mar's have time to do this, then so do I.

Now bear in mind that I dont do this at all. So if the pictures arent right (like they don' even exist) or the text is not centered or wrapped or something feel free to keep your suggestions to yourself. I have tried to get my most recent pictures off my memory card and onto the Kodak program, but am not very successful with it - I will keep trying and maybe get a more recent picture of the fat baby on here.

I know work is lame, but I am still rolling my eyes about it twelve hours later. Our Captain has been handing out the "other duties as assigned" like they are going out of business. My snake charming buddy has been so good to go along with my crazy Bountiful ideas (luv ya!) - and somehow we both got roped into the business of fixing other peoples problems (yes that is the general wording of our job description, but still...). You think with her horse riding- pig roping- cow tipping experience she could have seen the ropes coming to get us. And she may have, but as she had this news broken to her many weeks ago, I think she didn't yell out to warn me so she would have some company on the broken boat of corrections.