Simply....beautiful.

**My wonderful sister wrote this for me (my nic-name is "Mur"), and  showed once again that God gave her such a wonderful gift of written word while also lifting those up around her.**  Thank you, Jen.  I love you for it, and for the gift that is you as well.
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[The Specialness of Mur.]

I don't usually use Biblical references.  Just couldn't help myself this one time.

You know how the Three Wisemen brought gifts to Jesus and all?
Gold.  Myrrh.  Frankincense.
We're gonna change "myrrh" to Mur 'cause it helps my weird little story along better.

Anyway... Mur was presented to the Christ Child soon after his birth.  And I think he knew this particular Gift was far more valuable than the others 'cause he took a special shine to it later on down the line.
He was given this Gift, the Gift returned his adoration whole-heartedly.
He bestowed upon Mur the most lavish of all appreciative tokens.

First, Mur was given unwavering Love.
Which was followed by Mur's very own Angel.  (And really?  Who doesn't want one of those?)
The Angel was Mur's most precious gift.  The beautiful creature brightened Mur's life to a degree we'll never understand.
As time went on, Mur began to feel a little doubtful to the deserving of these wonderful Gifts.
For that, the Christ Child had the Cure.  Faith.
To help Mur believe that these Gifts were, without a doubt, fully deserving.
While Faith has it's own set of turmoil, it is unbreakable and has a strength all it's own.
If you're concerned about the floor dropping out from under Mur, don't be.
Mur has Love to fill her life and heart, an Angel to always watch over her, and the Faith to give her strength when things seem impossible.
We should all wish to be so obviously blessed.

-- Love you, Mur.
And I'm grateful to have the Gift of you.

Ordinary becomes extraordinary.

Monday began the 2nd full week of school for Angelus and the first full Speech and Occupational therapy's for Faith.  Angelus' old Kindergarten teacher got some toys in a grab bag at a thrift store and there were some StarWars figurines in there, so she thought of Angelus and sent them over to him in his 1st grade classroom.  He was able to yell "Thank you!" and "I love the Hans Solo one!" to her this morning.  See...point for a small school.

Mom and Dad got Faith to her appointments yesterday.  I really figured just Mom would go, but Dad said he wanted to go to a few of them to make sure they weren't saying anything "outta line" and just to learn more about what they could possibly do to help.  I had no idea, but apparently after the OT learns more about Faith she can recommend we get up to $2500.00 worth of stuff to help her (per year).  She also told them "Faith's more autistic than what you folks think".  [I pretty well knew that, but a Momma usually knows]

She saw the Clinical Psychologist today, it took about 2 minutes before she asked; "Has anyone told you she's Autistic?"  I said, "Yes. The Ped. Developmental Specialist diagnosed her as being Autistic as well, but Social Security sent me a letter saying they didn't have enough information and to come see you."  She then said if they deny you, you should appeal it because "you're gonna need it".

After the appointment was all over, I had to go buy Angelus a new backpack for school as his wasn't holding his folder.  I had it in the car when we went to pick him up sitting in his chair.  He LOVED it.  It's got 3D dragons on the back of it, also had to get him a new Homework folder as his other one is looking awfully crumpley.  His new one has sharks all over it, he loved it as well.  Yea!  He said "Faith can have my old Batman one 'cause she goes to school sometimes and likes it."  He is correct.  She plays with that thing a lot, but I kinda think it's because it's "Big Brothers".  So, she will probably love using it.

Gatherings.

Yesterday we went to celebrate my aunt's birthday with her and the rest of my Dad's side of the family.  Angelus and Faith went with me.  We had a great time.  Faith took to my cousin, Sabrina very well...which is new.  She usually pushes almost everyone away (except me, of course).  She ran around the yard, across the street and on into another field where my Dad just chased her.  They had a good time with that and I took lots of pictures.

  Angelus played with the other kids around and I managed to snap off a few cool photos of him as well.  He just finished up his first full week of First grade.  He's been reading to me every night and was a tad put out at the end of the week when their "prize" ended up being a few skittles.  He was hoping for a cool little toy or something.  Angelus managed to make a 102% on his 1st test of his school career (he's WAY smart like that) and he did it on his first try.  He ended his week with getting kinda sick, but as of today he's really only missing a little of his voice, but feels pretty good otherwise.  I'm sure there will be way more to discuss about school with Angelus, but he really doesn't like school and never has (but has a few friends he enjoys), so he doesn't just talk a ton about it.  1st grade and already isn't a fan...wonder what the rest of his school career may hold.

On the way home from my Aunt's we stopped and got ourselves a shake.  He got a chocolate and remembered then why he doesn't care for the chocolate shakes.  Maybe I'll bring him home a vanilla one next week.  He did do all his homework stuff and made the 102% on the test and only got in trouble for talking (which isn't a big deal to me for him).

Faith has her first "full session" with Speech and Occupational Therapy Monday.  My mom is going to take her because I have to work and am taking Tuesday off to go to the Doctor's appt. but I still feel kinda like a "sub-par" parent since I'm not able to be at everything with her.  I feel like I should be with both kids whenever anything like that is going on.  They're my kids and my responsibility, but it's also my responsibility to make sure I can take care of them too.  So...going to work it is.

Last week a "pre-screen" of sorts showed up for us to complete and I looked at it a few times and my brain feels short circuited.  It's more information than all the past appointments combined written out in long hand, and some of the questions just seem a tad off the wall.  I really should get on it, though as it's supposed to be completed by Tuesday.

Angelus just decided I could be a "super-hero" and my name could be "Glory Mom".  He thinks I'm strong.  Like I've said many times...I've got some pretty cool kids and family.

Gettin' therapized.....:)

Faith is now all set for Speech and Occupational Therapy. They will begin August 23, 2010...and will be one time a week to begin with. I love the O.T. and am willing to give the Speech therapist the benefit of the doubt. He re-read her entire chart and seemed to have a better idea of where he needed to be "coming from".

I asked the O.T. if she thought Faith was Autistic, and she said; "yeah, I'm sure it's Classic Autism." And that she's at least "Moderate" and would say 'severe" because she doesn't have language. That is what I thought too, but no other "professional" would say. I don't know if they were just too frightened to, or if they reserve that for later or what exactly. She wasn't sure why they hadn't told me either, but it appeared very clear to her. She did state that our household being as quiet and laid back as it is, is just about the best thing for her and has been a really big factor as to why we haven't had to deal with as many melt downs as other busier houses.

That makes us feel good, that we've helped her just by being who we are.

She did the most bizarre thing, for her, at the end of her therapy appointment today. She started getting all up-set and had went behind a partition, so I went to get her and she had taken her shorts off. She was in a better mood once she had taken her shorts off, but I told her "you can't go runnin' around pant-less" and put those back on her. Silly girl.

Next week: Speech therapy on Monday
Occupational Therapy on Monday
A second opinion with another Dr. on Tuesday

I think we're about to get her a routine of who to see, when and where.

"Mmmmm! Pop!"

Tommy, Faith, Angelus and I went to Angelus' 1st grade open house Thursday night. We met the teacher and talked to some of Angelus' classmates parents. One of his classmates is mild-Autistic (bordering on Aspergers). His mom told us that her little boy (that Angelus plays with pretty well...I know. Angelus and visiting with others? Who knew?) didn't talk until he was 4yrs old and she was able to potty train him at 4 yrs of age. He's been in Angelus class the past couple of years and I didn't know, but after his mom said something I could "see it". Anyway, gives me (even more hope) for Faith. 

Her Speech therapist said we needed to work on bi-labial sounds such as "Mmmmm. Pop! Book!" I got her to do some of the "Mmmmm and Pop!" But couldn't ever get the Book! sound to come out. I figured this was a very good start for us. The funnier I made it look and sound the more likely she was to try it. Monday, Aug. 24 we go in for her evaluation with the Occupational Therapist. We're going to have to take her to Tahlequah for O.T. for now, but the school is hoping to get her to Oaks before all is said and done. At least there's a beginning.

Angelus' first week in at school and Friday I walk in the door his first words to me were, "I got in trouble for talking". My response; "Well, that's to be expected." If you have ever met Angelus this would not surprise anyone.

DSM IV diagnosis criteria and other news.

TheAmerican Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders is the main diagnostic reference used by mental health professionals and insurance providers in the United States. The current (fourth) edition, which was published in 1994, is commonly referred to as the "DSM-IV." The diagnosis of autism requires that at least six developmental and behavioral characteristics are apparent, that problems are evident before age three, and that there is no evidence for certain other conditions that are similar.

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)

(1) qualitative impairment in social interaction, as manifested by at least two of the following:

(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction (x)
-Poor eye contact I suppose fits.

(b) failure to develop peer relationships appropriate to developmental level (x)

- She doesn't develop relationships with peers.
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest) (x)
- I've never had her point to, well, anything nor look at things I am pointing at.

(d) lack of social or emotional reciprocity (x)
- She does laugh and cry, but does not notice if others are happy or sad.

(2) qualitative impairments in communication as manifested by at least one of the following:

(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime) (x)
-She's gotten to where she says a few words, but doesn't know what they mean. For instance, she said "hello" all day long one day, but not to anyone, just walking up to the wall, spinning around, looking at a book...saying "hello" the whole time. She's called me "momma" maybe 5x her lifetime and I have never got her to respond to her name.

(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others (x)
-She can not initiate or sustain a conversation (she says very few words, like I said and doesn't know what they link up to).

(c) stereotyped and repetitive use of language or idiosyncratic language(x)
- She makes noises that are interesting sounding and very repetitive with them.

(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level (x)
-She doesn't do this at all.

(3) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:

(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus(x)

-I think her interest in her one specific toy falls under this (if she doesn't have it in had, she is VERY up-set, but she is getting better).

(b) apparently inflexible adherence to specific, nonfunctional routines or rituals (x)
-If the light is on in my room the television must be too. She will turn it on, but if the light is off the television must be off. She will turn it off even if she gets up-set about it being off. She also has to make sure her Daddy's glasses are on a certain way or she will get up-set about that too.

(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) (x)
-She stares at her hand in a way that looks like she's trying to talk to it, and she spins and spins.

(d) persistent preoccupation with parts of objects (x)
-Again, possibly the toy thing but she will also stare at spinning fans and things of that nature for hours.

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play
C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.
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I know, not a totally interesting read, but when it's your kid you probably read this a zillion times to see if "they match up" or "if they got it right".

In other very sad news, Angelus lost his puppy last night/ this morning. It passed away. His reaction: "That's ok. It's in Heaven now, so she's all around us. I don't have to be sad." What a blessed lady I am to have these two little ones.

A start

In an hour, I will have Faith in with the Speech therapist for her Speech Evaluation. Angelus (our oldest, but still our little boy) wants to go with us because "if Faith talks, I want to hear it" and "I can't wait until I can talk to her." At least he's very good encouragement. Maybe the Speech Therapist will be able to tell us things to work with for her and just have some ideas for us. Then off to make sure Angelus is enrolled in school since it starts in two days, and to [hopefully] meet his 1st grade teacher. I hope we like the Speech Therapist, I hope she likes him too, I hope he is able to keep her attention for whatever needs to be done.

After an hour and 20minutes or so with the Speech therapist today, we will have to wait for about a week to have the IEP completely taken care of. Faith seemed to like him okay, I guess. He showed her a lot of pictures to try to get her to respond to them, but of course, she didn't look at them let alone name any of them. He is going to try to see her about 30min. a week to begin with which I think is great because he is going to try to work up to an hour a week, but there's no way he could keep her attention for an hour right now. Thirty minutes may be doable.


I got home and checked the mail to find a letter from Social Security, saying they need a 2nd opinion on her basically and gave a time and place where to go. Aug. 24, 2010 @ 10:00 a.m. I think for me the "scariest thing" would be if they came up with a different diagnosis because it would confuse me so much and so far every single person I've seen has been on the same page as us (Tommy and me). I don't want her to have Autism, but I couldn't imagine what else it could be...it's the only thing that links up with her behaviors or lack of behaviors. I remember being really stressed about the first Pediatric Developmental Specialist I took her to, then the hearing test, the multi-disciplinary team evaluation. Every one of them make me nervous, just because I'm not certain if they're really going to listen to me and my concerns (which hasn't been the case since I finally got someone to listen), or see what I've been seeing. If they come up with something different, will I need to take her to a 3rd person just so I can get two peoples to match up?

And it begins....

The date on the bottom is wrong.  It's Mid-July 2007.  Faith is about 1 week old

When I was in college I had an awesome professor who taught Applied Behavior Analysis, her name was Mary Sweetdarter, and she was indeed a very sweet lady. She also happened(s) to be one of the people in our great state of Oklahoma who's name is linked with ABA therapy for Autistic people. That was my first "introduction" into what Autism may be, a college class where I had one of the best teaching me. Then a few years later I began to work in the Mental Health field with children, I didn't work with any Autistic children, but learned so much information just from my job and how to navigate some "professionals" and resources if one were to come up with the need for it. I remember thinking if I had a child with a developmental disability I didn't want it to be Autism, because you "didn't get them" and that would be such a hard thing to live with.

I was so wrong about so many things. Faith has such personality, intelligence, and I do "get her". She sometimes (almost always) has difficulty communicating. She is so sweet and smiles and laughs a lot, she loves to give me (and sometimes her Daddy) hugs.

Ever since we brought her home from the hospital people commented on how quiet she was, and she was so hard to hear that I had lay right beside her to know if she needed anything. She was always content just laying and being in her "own little world", but we have had sleeping "issues" with her ever since she came home from the hospital (in that she slept very little). As she got closer to 18mos and on into 2years, I remember taking to different well child visits and always asking them to check her ears for ear infections or asking if they thought something might be wrong with her hearing and there wasn't an ear infection and she always passed the hearing tests they did with her.

When she was 2 I tried even harder to relay my concerns to others, but they kept saying "she's fine"...and it took me quite a while to get someone to listen to me because generally I am fairly quiet and soft spoken, she is the 2nd born and my first born, Angelus talks A LOT...it wasn't until she was a few months from turning 3 and she had so many tantrums in one day that were going to end up hurting herself before I got some one to listen to me because I wasn't going to let them not listen. This was crazy and not safe at all for our little one. I made an appointment with the county to have a Developmental Screen done on her, then I said something to Tommy about it. I remember telling him; I think she *may* be autistic and I have an appointment set up for her, his look was somewhat that of surprise, but he did some research on his own as well and he could see why I wanted her at least screened for it. Our little girl was almost 3 and didn't talk (at all) and now was starting to throw herself down and potentially hurt herself.

My boss asked me one day how things were going with Faith and the poor lady, I just cried in her office for over 45 minutes because I know "they" say it's somewhat environment and somewhat biological. What if there was something I did to cause it? What if it was something I didn't do? What if it was something that happened a long time ago and manifest its self this way? I didn't smoke, drink, or do any kind of drugs while pregnant (nor have I ever, actually). I tried to exercise as best as I could, and eat healthy but still feel like there's something I could have done/should have done to prevent her having to go through this. After a good cry, I just got "on the ball" to try to make sure that she has everything in life to live the fullest life she possibly can. I get sad and frustrated often that she isn't able to communicate her needs and wants to me and I can't really communicate mine to her (but I still try all the time). I also know focusing on that instead of her will make it so much harder to get done what needs to be done.

The past few months have been filled with a whole array of doctor visits, evaluation, paper work, interviews with people I thought I'd never have a reason to talk to. Learning about alternative ways to help those with Autism, and different areas that may or may not need to be addressed depending on the person. There is so much information that it can almost overload my brain. GF/CF diets, the Feingold diet, Chelation Therapy, not having red dyes in food...what to do if they're a "runner" and Faith is. She will take off wandering down the road, over the hill and through the woods with out any idea of the dangers out there and be completely oblivious to them. The latter I will go into greater detail in a different blog as I learn even more.

A little of our story

This is kind of a way for me to share with those who want to know, and also a way for me to process through things I'm feeling through this crazy maze of life. :)

We have a beautiful daughter and a wonderful Son who give my life so much meaning and enjoyment. Our littlest one, Faith was recently diagnosed with Autism and this is a place where I'd love share a little bit of our journey and how it's affecting the family and just what a great family I do have. I love being a Mom way more than I ever thought possible, and every single day is such a blessing and joy.

Angelus is our oldest and the best big brother Faith could have gotten, and the best son we could've ever asked for.

This is "our journey"....