We practiced more...

Disregard my explanation of the grenade...she just looked terribly confused looking at it.  :)

Have a fantastic New Year as well!  Maybe between now and then I'll be able to video Angelus doing something or singing a "catchy tune".  I'm sure gonna try.  Faith can't be the only movie star in the family.

Hope Christmas found you well and with a peace that only Christ can give.

Christmas has now came and went.  It was a fantastic one.  Everyone was doing well, appeared to be healthy and we got to hang out with the family.  The night before Christmas Eve Faith, Angelus and I all embarked on the adventure of making fudge.  It smelled like fudge, looked like fudge, and in the end even tasted like fudge.  Yea!






Christmas eve we usually open gifts here with our little family.  It's a pretty nice tradition.  It started with Tommy's family and we just kept it.  He and I get almost as excited watching the kids open their gifts than what they get opening them.

Angelus got lots of things that were Star Wars, which is always a hit with him.  He got some movies and video games, puzzles, toys, a TMNT snuggie (that's huge).  He LOVED it all.  He thought Santa did good. :)  Faith got a lot of musical instruments.  She may be able to start her own one-man-band.  Tommy got a new (warm) coat, that he would probably talk about getting a new one but never really get around to getting one.  He also got a nice sweater, a couple of pocket knifes and an awesome alligator key chain.  Really.  It looks very cool.   Then Santa decided that Tommy and Angelus were really good and delivered a PS3 and some games.  It's *apparently* awesome...according to both of them.

I got a beautiful diamond and gold bracelet, Tetris worlds, a Nook and a $50.00 eGift card to go with it.  Very awesome!

Christmas Day was spent with my family.  We had a nice big dinner and got to visit with them for a while.  Jennie, Carl, Volare, and Carl's mom were there along with Buddy, Mom, Dad, Erin and Jennifer and my little family.  I always enjoy visiting with them.  The kids got more toys from the grandparents and I got a new shirt, jewelry, stuff to keep me warm and a new movie.

Of course we woke up to our heater not working Christmas morning, but after the dinner and the opening of gifts at my parents my Dad came over and got our heater to warmin' us all up again.  Thank goodness.  It's been a wonderful Christmas with my family the smaller and larger family

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A few nights ago as I watch Faith sleep it took me back to when I took her in for her 2month old check up.  She was sleeping peacefully, but every now and then her hand would "twitch" uncontrollably.  It did this most of the night as I watch her sleep.  When she was two months old I took her in for her well child visit and asked the doctor about her "twitching" because at that time her legs and arms tended to do it a lot (I didn't remember that ever happening with Angelus).  The doctor stated that her "neurons are still connecting and not to worry about it, it's perfectly normal".  Now I wonder if they would have listened and taken that concern more seriously if there really was (is) something to it and what kind of progress may have been made at this point in life.  Nothing that can be done about it now, and we're finally getting things in place for her but still makes me wonder if I was actually seeing things that really were there (and not being "all crazy") before someone had enough sense to start really listening.

Hope everyone else had a wonderful Christmas Holiday as well!

The Holiday's are Coming!

We're gonna try again with this whole "Jingle Bell's" on Christmas day. We've been practicing...still only doin' the airy/whispery kinda thing she's doing there, but maybe Christmas Day she will be all for gettin' loud. :)

I could've, should've....and finally did (update, that is).

I should have updated, but I hadn't yet.  Last week we did a review on Faith's IEP for Speech.  She has made tremendous progress in the past couple of months.  The last review we did she hadn't even accomplished 50% of her goal(s).  This time she hit over 80% of two of her stated short-term goals.  Mimicking the therapist more often, showing some interest in some things and just kind of finding a "niche" to work with.  We have also started drawing up the letter we will need to send off with the O.T. for a swing for Faith.  It's about 10ft. long and 8ft. tall (so pretty good size)...Faith just always seems so much more contented after swinging on it for an hour or so.  It can be taken down and put up indoors or outdoors.  On the Communication Device front, we're still in the fairly beginning stages of working on getting it.  Her Primary Care doctor will have to sign off on it (and my primary care doctor has said that she would sign off on it for us, since Faith has been being seen by a clinic instead of an individual doctor most of her life).  The Speech therapist will also have to sign off on it.  We have also began talking to the principal about starting Faith in school next year.  She will only probably go a few hours a few days a week, we will just have to wait and see how it all unfolds and what she can and can't handle.

Angelus is also doing well.  Thursday night he did his school Christmas play where the kids sang a song, that was pretty cute and I understood most of what they were saying.  Tuesday he got to go with the Gifted & Talented program to Muskogee to sing at the VA Hospital and to see some pretty lights.  Apparently he thought the bus ride was the funnest part 'cause they sang songs and played "all kinds of games...any kind you can think of".  Faith "visited" Santa in that she didn't flip out or anything when she saw him and she wasn't about to take candy from him or sit on his lap, but she did just laugh at him hysterically every time she looked at him.  I thought that was pretty good for her.

Her new thing now is to jiggle a door knob then knock, repeat, repeat, repeat....we went to Stage and she was doing that, I found it really funny and fantastic that she totally understands the concept.  Although, I'm pretty sure others in the store were gettin' a little frustrated with her.  They had stuff that needed to be tried on. :)  That's okay, I just enjoyed the moment.  It's what you're supposed to do in life.  Enjoy moments.

One day I am looking forward to "getting on to" my daughter.  I know that sounds silly, but I see other Mom's and their frustration of their kids not doing what they ask or just being difficult in general to them.  I usually think (to myself, obviously)...how great would it be for me to tell Faith "go clean up your room" and she gets it, she understands what I'm saying.  Even if she stomps her little feet and says "but I don't wanna!".  Inside I know I'd be smiling, but I'd still hafta make her clean the thing up.  :)

One week away from Christmas.  May everyone be as lucky and blessed as we are in the Brownell household.

Red 'n Yellow, Black 'n White...they are precious in His sight

Speech therapy this week was hilarious (and somewhat unproductive).  Faith woke up Monday morning around 3-3:30 a.m. and was doing some weird growl-y vibrating noise.  She'd make the noise for a long period of time, then laugh hysterically.  She continued to do this up until the middle of Occupational Therapy which was around 11:00.  On our way to Tahlequah to Occupational Therapy she learned that she can get herself out of her seat belt and car seat.  She also found this hilarious.  I did not.

Now we're looking into getting a swing for the house for her.  It seems to help regulate her.  We also are going to work with her with music therapy.  I just need to send off the order form for it.  I have it, have it filled out and everything.  Just haven't sent it off.

Some randomness:  Faith likes to get her food all lined up FIRST, then she will eat them one at a time.  It has to be lined up just "so".  She also loves fries, but she wants them (no matter how big or small) broke into 3 pieces AND she wants you to help.  Then she will eat them..

Angelus is still hoping for a "real" light saber and is convinced Santa will deliver because "he's magic"...so he can make one.  I've been using this to convince Angelus he needs to go to school for Electrical Engineering for the blade part and Mechanical Engineering for the hilt part.  Dude is smart, he could totally do it.

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Someone at work mentioned going onto "motivematters" to find out what our color was, so some of us did that.  I figured out what it was going to give me before it sent me the results, but anyway... Possibly my worst personality trait or at least in the top 5. I never had a name for it and I like the way they worded it, silently stubborn.
Apparently I'm a White which means I'm motivated by peace.  I like that.  I'm also silently stubborn A LOT.

Whites (Motive: Peace)

Whites are motivated by Peace. They seek independence and require kindness. They resist confrontation at all costs. To them, feeling good is more important than being good. They are typically quiet by nature, process things very deeply and objectively with great clarity. Of all the colors, whites are the best listeners. They respect people who are direct but recoil from perceived hostility or verbal battle.

Whites need their "alone time" and refuse to be controlled by others. whites want to do things their own way and in their own time. They ask little of others and resent others demanding much of them. whites are much stronger than people think, but are not often seen for their strength because they don't easily reveal their feelings. whites are even-tempered, diplomatic, and the voice of reason; but can also be indecisive, unexpressive, and silently stubborn. When you deal with a WHITE, be kind, accept and support their individuality, and look for non-verbal clues to understand their feelings.

Point for the Mall....(and I don't like malls a whole lot).

Tommy told me about this being in the Tulsa world, so I looked it up.  I think it's fantastic! and if Faith seemed to care to see Santa even a tiny bit, we'd take her.  Then again, maybe she does and I just don't know it...yet.

 

 

Sensitive Santa event

Tulsa Promenade mall

12/05/2010 09:00 A.M. - 11:00 A.M.

Considering approximately three to six children out of every 1,000 have been diagnosed with Autism Spectrum Disorder (ASD), it can be difficult for families of children with autism to enjoy some of the holiday celebrations and traditions most people take for granted, including simple things like sitting on Santa’s lap in a busy shopping mall. That is why families touched by ASD are invited to Tulsa Promenade Mall on December 5 from 9AM-11AM this season to celebrate “Sensitive Santa,” an event that caters to children with autism and allows them to enjoy one of the holiday’s joyous memories - sitting on Santa’s lap.
For the event, the Santa area will become “sensory friendly,” meaning the lights and music will be turned down, staff will be instructed to avoid loud, distracting movements, and the mall will be closed to shoppers. Tulsa Promenade mall in partnership with Worldwide Photography will also provide each family that attends with a free 4 x 6 photo keepsake to commemorate the holiday season.
“We wanted to create an event that celebrates the spirit of the holiday season and brings a small, but memorable part of the holiday season to families with autism,” said Susan Frederick, Marketing Director, Tulsa Promenade mall. “‘Sensitive Santa’ will allow these children to experience the same enjoyment with Santa, but in a much calmer, less intimidating environment.”

3a.m. post Thanksgiving Day

So many things to be thankful for.   I try to "celebrate" Thanksgiving year round...minus the food.  I mean, if I ate like that all year I'd be as big as a house or a small apartment.

This year has been filled with so much emotion, information, education, and ups and downs.  I'm thankful to have gone through it.

I'm thankful for:

My children.  Their health and happiness.  Even when they are cranky and irritated with me, I still know they love me.

I'm thankful for the fact they feel safe enough with me to let me know they're cranky and irritated with me.

I'm thankful for Tommy because he makes me "see" things in a different perspective than what I would on my own.

I'm thankful for my parents.  They are okay (and sometimes even excited) with me and the kids showing up at 2a.m. because I haven't slept in three days and Faith isn't about to let me and they are more than happy to let her hang out with them while I get some sleep.

I'm thankful that they hang out with the kids, talk to us, and just are the kind of parents that parents should be.

I'm thankful for my sisters.  All of them.  Jennie because she's my best friend as well as sister.  She's someone I confide in, hang out with, go shopping with, out to eat with, discuss important life events with but also talk about silly things like why we do or do not fix our hair, wear make up, or like certain television shows.

Erin because she's been great with the kids and helps me (when her leg isn't broken) to get Faith to let go of her squeezing the crap outta my neck in the mornings when I have to take the kids to Mom and Dad's.  She's had to help me pry her off of my neck many, many mornings.  It gets harder and harder all the time, but has nothing to do with anyone other than myself.

Jennifer because she's always more than willing to play with Angelus and he enjoys playing with her so much and also helping out with Faith.

I'm thankful for my job and for a boss who said; "Whatever you need to do for Faith to help her do it, and we will work around it." AND she meant it.  It's been several months of crazy appointments and learning to navigate different things, and she and my co-workers have been there to help assist in whatever way they can...from covering a shift, to rearranging a schedule for me to be able to be with her at her therapy's.  They have all been incredibly supportive as well.

I am thankful for Buddy as he teaches me more than he could possibly ever know in ways I'm sure he isn't even aware of.

I'm thankful for uncle Scott 'cause really every one in life needs an uncle like him.

I'm thankful for friends we have who take time to come out to visit us even when it's over an hour away (for most of them).  OR when grocery shopping is involved and baking sweets is involved. 
G
I'm thankful for the Autism Support group and how it's introduced me and my family into another world of learning, support and encouragement of these fantastic people who just want to help.

I'm thankful for all the encouragement I get from long lost friends that I have discovered and re-discovered on facebook.   It's really been a great thing.  They are encouraging, funny, witty, insightful and help through a day more than they realize on some days.

So many, many things I am thankful for and people I am thankful for.  Hope the rest of this Holiday season is great and I can continue to remember all the things there are to be thankful for...even when the "going gets rough".

Happy Thanksgiving!  Good luck on Black Friday/ Cyber Monday.  Be safe. Have fun.

She is with me.

Faith did good with the communication device and we were able to capture it on video.  The O.T. is starting the process to get it all funded.  She will have to have the Speech therapist sign off on it before she submits it.  'Cause usually Speech Path's are the ones who do this kind of recommendation, but she's been with Faith more and sees more of her personality, interests, and strengths.

Faith kept pushing the "play" button.  I didn't think a lot of it at the time.  I was just glad she was showing interest, as she was acting an awful lot like she was just gonna hop down on the floor there and fall asleep.  Anyway, thinking about it later....I always ask her when we get there and I'm taking her out of her car seat if she's "Ready to go play?" or if she's "Going to go play on the swing"?  Maybe I'm reading too much into it (but they have good receptive skills, it's the response ones that are hard to read), but I'm thinking she linked the two together.  :)

She also pushed the buttons to [GO] and [SWING], so she hopped up there and got on the swing and just giggled.  I do think this will be a very good thing and after seeing her interact with the device I'm now even more convinced.

A little 'gelus

Tommy and I were married for about 3 1/2 months when I found out I was pregnant with Angelus.  I was 6weeks along and it was during my Spring Break from college, when we figured it out.  I continued to go to school during the pregnancy, which some people think must be hard.  I imagine it would be if you didn't have a good support network.  I felt good pretty much all the time, had all of my family to help so all that was really different was I got fatter and had to pee more often during the school day (sadly, this has never let up).

November 21, 2003, Angelus Linn Brownell made his way into the world.  I was so glad to have him here.  The next few years were filled with wonderment, watching him learn to crawl, sit-up, stand up, walk, talk and show his personality.  Tommy doesn't like to go very much, but Angelus did.  So, for the first 3years of his life we were traveling buddies.  We would just go check out places together for no other reason than we liked to get out a little (but not a ton).

On Angelus' 3rd birthday I went to see the doctor and he went with me, we found out at that time he was gonna be a big brother.  He was SOO excited (he routinely asks me if he can have more siblings).  Faith was born about 7 1/2 months later.  He was (and still is) such a proud big brother.  I took the two of them grocery shopping with me, out to eat with me...well, pretty much anywhere I went.  Angelus took every opportunity to tell anyone that would listen to him..."Hey!  That's my baby sister, Faith! and I'm 'Gelus!"  Which almost always led them to saying; "I'm sure your Mommy and Daddy love you too." And that left him so confused (as that boy doesn't seem to have a jealous bone in his body), I would inevitably have to explain to them that's his name.

Angelus starts Pre-K and makes some friends and has fun playing with the other kids, but learns quickly that he hates to color.  Everything else in Pre-K is okay.  He likes his teacher, the helpers, playing in the sand box, running around playing and making friends with all the kids.  Then he moves up to Kindergarten where he looses his first tooth and begins to learn more about other kids not having the same kind of home life as him (as everyone's is different), so some things he would get in trouble for is okay for other kids and some things he wouldn't get in trouble for other kids do.  He had to (and is still working on) figuring this one out.

Around the end of his kindergarten year and on into the Summer we started really trying to figure out what was going on with Faith.  He'd noticed and commented several times about kids littler than her talking to him more and wondered why she didn't really talk to anyone.  He also voiced concern and "disappointment"--not sure if that's the word I want to use there--about her not ever wanting to play with him because he tried (and still does try) to get her to play with him all the time.  He is the ever protective big brother and usually doesn't even want to go to most places unless she can go with him.  He also knows that trying to get her to play with him and talk to him is even more important so he still tries and he talks to her all the time too.  He gets SO excited when she wants to sit up beside him, comes over by him and gives him a little hug, or he hears her say or try to say something.  He understands some of the "noises" better than what anyone else does and can tell others what they mean or repeat them for clarity, if the need arises (and it has before).

Now in 1st grade he has been recognized for how incredibly bright he is (and he is), but I'm way more proud of the person he is.  He has a great big heart with care and concern for others around him.  He is energized and loves a good light saber fight like a lot of other little boys, but he is usually quick to notice if someone needs extra words of encouragement, a second or even a third hug to help them feel better, or some additional playing time.  I've seen him do this with adults, kids, and kids even littler than him.

He's lost two more teeth (one on the top just this past week), grew taller, ate more (although he is a pretty picky eater), read more, learn more, ask more questions.  Not be afraid to ask more questions.  Do a public speaking event.  Be confident enough in himself to want to grow up to be a "Jedi!" even though everyone around him wanted to be doctors, lawyers, teachers, dentists, and he knows Jedi's aren't exactly real, but he likes the idea of them and what they do.  They're the good guys who try to beat the bad guys and make things right.

Happy 7th Birthday!  I am so lucky to have you and so glad you're my son.

7 years ago I knew my life was more blessed than I would ever be able to put into words and as I have watched him grow and become who he is my life is blessed even more with each passing day.  The world needs a lot more people like Angelus.  I'm so glad he's my "baby boy".

The Things We do.....:)

We've had a pretty good week around here.  This past weekend we went and took some family photos where everyone did good (Yes. Even Tommy).  I just hope a couple of shots were got of Faith looking at the camera.  She has the most beautiful eyes I have ever seen.  So, really she should show them off. ;-)  Angelus did really good and had a great attitude too.  He even said after it was all over "Thanks Mom!  You planned a fun day for us."  Upon getting home from that, though, little miss Faith had definitely been over stimulated and was having a rough time, but that's alright.  All in all turned out to be a fun time with the family.

This is what the device is going to look like.

I'm very impressed with the Occupational Therapist (OT).  I know. I say that ALL the time, but she's good.  Anyway this coming Monday she is going to have the people there at her office with the Communication Devices and a video camera set up to video Faith.  Faith has to at least show there's an interest in it and we have to catch it on video, then mail it into the insurance company for them to cover it.  It's about a $10,000.00 device. It's very durable, small and has a carrying handle.  So, let's just pray that she shows interest Monday morning and we're able to capture it on video.  'Cause I think it will benefit her in ways I can only dream of right now and $10,000.00 isn't the easiest amount of money for us to come up with given Tommy and my salary's.

Angelus led his school in the 'Pledge of Allegiance' in which he did absolutely fantastic!  He had no stage fright.  When I asked him if he was nervous talking in front of all of those people he said; "What people?" Me:  All the people at the Assembly?  Angelus:  Why would I be nervous about that?....Maybe public speaking is his calling.  Seriously, he talks more than anyone else I know.  AND, I think it's pretty cool that he does.  He will also be turning 7 Sunday.  WOW!  Time sure does fly.  He has been amazing to watch and grow over these past 7 years. Don't know why God decided to bless me so much with these little ones, but I sure am glad he has.

Two Cents...

Seems like everyone has to weigh in with their "two cents worth" on your (my) child and them having/not having Autism or being Autistic...however you look at it.  Like, maybe she's not really Autistic and I'm making it bigger than what it should be although those who know me well know I don't tend to make a "big" thing out of almost anything.  There's generally a reason for me to have concern if it is there.  Whether it's misguided concern or just not really wanting to take time to really "see" there is more going on. They all have their "two cents worth" that I generally appreciate hearing, just some days it becomes a little "taxing".

Faith's Autism is actually fairly severe and I think if you have met her, you just know ( We had a couple of friends that once we told them we were having her "screened/tested" for it, they commented that they had thought she was Autistic, but felt it wasn't really their place to say so they didn't).   It affects her Speech severely and her Social skills.  My Dad asked me yesterday if Faith played with other kids since she will be a Pre-K bound person next year, but she does not.  Kids and adults can be around her, she will not play with them.  I have never seen her play with another kid and only very few adults.  That being said, she doesn't have the behavioral "issues" that sometimes come along with Autism.  Our house and my parents house is very laid back, calm and quiet...we have no idea if she may have some kind of behavioral issues come up when she is in a classroom that's busier and louder than where she is generally at, but life in general is louder than my house so we will have to see what happens and if we need to work with her and what might need to be done to help her navigate through life.

The therapists have stated Faith is a perfect candidate for, and recommended that we get a Communication Device for her.  Next week the O.T. is going to bring me a list of all of the different devices and we will go over the pro's and con's of each and she will tell me which one she thinks will be the best for her.  We will then have to do a video of her and the OT will have to write a letter and the insurance will cover the Communication Device for her.

I asked the OT lots of questions, I usually do but I was asking very basics of things like dentists, hair cuts, would she need a one-on-one aid?  She will most likely have to go to Tulsa to see the dentist, at the hospital as she will need to be sedated.  We're hoping for an Aid in the classroom that knows she will need to give Faith a little extra attention instead of a one-on-one aid.  It seems to be the best, but she will probably need an aid of some sort.
It's interesting the differences of what thought goes into each kid I have for what needs to be done.

The "Gifted & Talented" kids are doing something for Veteran's Day and Angelus and the other little girl in 1st grade that is in the program are going to do (lead) the Pledge of Allegiance in front of the whole school at their special Veteran's Day Assembly.   He is also really wanting his front teeth gone.  Guess that's what makes you "cool" when you're in the 1st grade OR maybe that quarter from the tooth fairy is that important to him.  He's well on his way to have on of those front teeth out, probably by the end of this week.  Very excited for him and very excited for Faith to be on her way to communicate with us as she continues on in Speech and Occupational Therapy.

Things that make you go.....yea!

Last week Speech and Occupational Therapy wasn't very good.  Faith was getting sick and was incredibly "whiny" about everything, so no good positive updates, but I knew there would be soon so I waited 'til today.

We also made a cool pumpkin basket this past week for the Autism Support Group pie Auction.  Jennie has a lot of great ideas while Faith gave it her "nod" of approval and promptly tried to sit in it.  

Faith didn't sleep at all last night, but I could tell she wasn't going to.  Anyway, this morning she still was alert and in a good humor, so I thought I'd take my chances.  I asked her if I could put a hair barrette in her hair, she shook her head "yes", and let me.  This is the first time she has ever let me put anything in her hair and let it stay.  She has also been nodding "yes" or "no" a lot more often to requests and questions.  She's needed something to pull her hair outta her eyes (where she likes it way too much) for at least a year or so.  I also bought her some little black slip on "dressy" shoes that she was able to put on herself this morning.

Still alert and awake at Speech.  She gave Mr.Jackson (Speech Therapist) her attention once when he said her name.  She also told him "yes" or "no" by shaking her head, to a couple of things (not everything, but it's a good start).  Then we began working in a book called 'A Day at the Zoo' it's a Wiig Assessment of Basic Concepts.  Faith turned the pages like she was asked.  She got fascinated with the page that had a circle, triangle, and a square and kept staring at it and flipping back to that page.  Mr. Jackson kept on saying triangle, circle, square then we heard what just sounded kinda like noises at first but upon listening closer she was pointing at the shapes and calling them their names. 

I don't think she will ever speak very clearly, but just hearing her try to say words is new and I'm trying to learn what they are.  I imagine sometimes when others think she's just making "grunting" or "singsong" noises she will be saying something, and I'll soon know what it is.

Occupational Therapy and she was spent.  She fell asleep while she was doing music therapy and swinging in her swing.  BUT when the session was up and it was time to take the headphones off, she was MAD.  She tried to put them back on her ears.  I'm so glad she likes the music (but I was certain she was going to).

The kids did trunk or treat at our local fire department, then we went to a chili supper across the street from trunk or treat and they had a good time.  Of course we had to go by and show off the little ones to Poppa and score more candy from their house.

'til next week or sooner, depends on how "bloggy" I feel and if cool stuff happens.

Super cool....Super Smart

Alright, my super cool and super smart and crafty friends who take the time out of their busy lives to read my blog (I thank you and think you're awesome)!   We're having a pie auction for the support group and I have volunteered to put together a basket (I'm not gonna bake...that's just crazy talk).  Now I need help with a theme for a basket....gimmie some good ideas. :)

One Smart Cookie!

Parent Teacher Conferences happened.  Angelus' teacher just told us about how he got along with all the other kids really well, wasn't a behavior problem at all (but does tend to get a little chatty), and just "excels" in his school work.  She gave us the STAR Reading computer adaptive reading test summary that he took back at the beginning of September.  It said:  He reads at a level greater than 92% of other students nationally in the same grade.  BUT the part the blew my mind (he's in first grade), was Angelus is at least 80% proficient at recognizing words and comprehending material.  This means he is at least 80% proficient at reading second grade words and books...this was done a month and a half ago and I know he's just gotten better.  She gave him the BEAR Initial-Skills Analysis for 1st grade in which he made a perfect score and then she showed us the one he took for 2nd grade and they only tested him on two of those things....Reading Basics: 18/18 and Comprehension he got a 11/12...who knows maybe he would've done almost as good on the 2nd grade one as he did on the first grade one. :)  He REALLY wants to make sure he gets all A's (for the gift card at the end of the year, but I also know he likes recognition for doing well and he should get it, he's incredibly bright and just wonderful).  He's difficult subject was Math where he got a 91%, but also if she graded on penmanship he wouldn't do so well (he also gets that from his Daddy).

The teacher was telling us that at the beginning of the school year she was having the kids read their "readers" and "he just blew right through that thing! I have never had a student read like that before".  Then she said something to his old kindergarten teacher..."Angelus Brownell...he's really advanced with the reading" kindergarten teacher:  Oh yeah! He's just a good reader.  Oh yeah, after she told Angelus just how impressed she was with his reading, he's like "I know, I read comic books!" 
I commented to the pre-k teacher that I'm convinced the pre-k and kindergarten teachers had a lot to do with his advanced reading.  She said "I don't know about that, but I'll sure take credit wherever I can get it".  It's really a combination of the teachers, parents, and himself.  I mean you can't make a kid like to read as much as he does, or make them getting good grades as important to them as what it seems to be to him.  I think there's a lot of internal stuff within him and he just so happened to get a lot of fantastic support around him to help encourage his enjoyment of reading and doing well in school.  They may even have him read to the younger grades which he would LOVE to do.

Just needed to brag on my boy tonight (even if he wasn't "excelling" in school I'd still have to brag on him, he's awesome)!  He's the best son and brother we could have asked for.

"I Need That!"

Another week of Speech and Occupational Therapy.  Seems like things are going along well for our little one.  I'm SO excited to talk about this week.  Faith hasn't been feeling real well the past couple of days, but she wasn't running a fever or anything...So, onward to the therapy's!

We get to Speech this morning and the Speech Therapist takes Leonardo away (he's her security blanket) I don't know why he takes it from her, I think he thinks she works better without it, but she would work better if he would just let her keep a hold of him.  Anyway, she was saying "I need...." then he said, I think she's saying "I need that!" while looking at Leonardo, that's kinda what it sounded like, so he held up Leo and said say that one more time and I'll give it to you, she said "I Need That!" very plainly, easy to understand that's what she was saying.  So, of course he gave her Leo. :)  Then we were walking out of the classroom outside to check-out and she said "Oh! Me outside".  We ventured over to tell the principal how the session went (cause that's what we do at the end) I said Faith can you tell 'em 'bye-bye' she said 'di-di' which is pretty close in my book.

Occupational therapy she did music therapy today which she LOVED and I got an order form so I can send in and order the special headphones and a "belt" so she can wonder around as she is listening to the music instead of stay planted for 30min.  The OT and I also discussed potty training and she said we're probably looking around 6yrs old for her, she's seen some do it sooner some do it later and some not do it at all...but she was very confident that Faith would be about 6 and not 12 or not at all (shew!).

Angelus is still doing REALLY well in school and is super smart, a lot like his Daddy. :~)  Tomorrow he's gonna go check out the pumpkin patch and we also found a Ninja costume for him for Halloween.  He liked the "backpack" that went along with it because it had all the cool swords and things.  That's good because we weren't having any luck finding Luke Skywalker stuff this time around.

One excited and happy Momma.

I am Convinced life is 10% what happens to me, and 90% my Reaction to it. ~Charles Swindoll

I am now down to 4days a week at work because it was difficult for the grandparents to make sure Faith was getting to her appointments like she needed to be, and also I really felt like I needed to be at them.  Apparently I was correct.  8:30a.m. Speech for 30min.  We had her progress report today and she hasn't even hit 50% of what her objective/goal was, but the Speech therapist stated she did better with me than she ever did with the grandparents there.  He got her to pay closer attention, look at objects and she made a few more noises.  Right now we're trying to work on sameness and he sent us home a little "bucket" that says "Beginning Sounds" with different objects to take out of there.  We learned the sign for tomatoes and for egg because her favorite toy in there is a bird's nest with 3eggs in it.  We worked on that some this afternoon when we got home. 

Occupational Therapy went well too.  She is still loving the swing.  Today they went from just swinging straight to spinning a little.  She likes spinning, but only when she's in control of the spinning.  She also did really well with putting some toys into a little barn kinda thing that made a "Moo!" noise when she put these token things in it.  They are wanting to work her up toward at least taking a ball and handing it back to them.  I think it's overall objective is to learn turn taking type behavior.

We went to pick up Angelus from school and his teacher asked if she could borrow a costume of mine from a couple of years ago because apparently the teachers are going to dress up like Superhero's this year.  They get into the Halloween stuff, it's really pretty awesome.  His teacher also told me that Angelus hurt his leg, she thought she wasn't quite sure, but she let him lay down in the back of the room for a little while because she noticed that he still wasn't moving very well.  I think through my questioning I've figured out that he pulled something at the end of P.E. and he is getting sick b/c he feels like steam is just radiating off his head right now.  So, normal everyday "hurts" are hurting 100x more.  It could also be some kinda growing pains in there too, but he said that wasn't the case because that doesn't happen 'til he's 7.  Not sure where he got that idea, but alright.  Dude is sick.

OH and also we've found someone who is willing to work with us to do family photo's because I knew just a regular photo booth kinda set up wasn't gonna work for Faith.  I'm so excited to have a family picture/ kid's pictures (together) taken.

Frustrating news, Social Security wrote down some of our information wrong so we got back pay stuff, then we got nothing because they wrote our account # down wrong.  I've called them twice now to get it sorted out, but I called the "main" one and apparently I need to call the local one even though they said it was taken care of.  They were incorrect, but maybe by the end of the day tomorrow it will be taken care of.  I sure would hate to start the whole process all over again because of their mess up, but we'll do what we need to do.

Reactions.

This was a question posed on 'Autism Mother's': 

How about sharing the answers to four questions about when your child was diagnosed. How old was your child? What were you told? What was your first thought? Where did you go when you left the clinic room?

The first appointment with someone was at my house who did a pre-screen.  We were told there needed to be a multidisciplinary evaluation of her.  My thoughts were "yea!  I'm not crazy!".  I was here in my house.

 

Multidisciplinary meeting:  I was told: "While I can't give you a diagnosis, I know in my heart of hearts she's Autistic".  verbatim.  I still remember the words, where everyone was sitting.  It's almost like a photo stopped in my head.  Tommy, Faith and I all went to Subway for pizza (Angelus opted not to go). Then we came home and I came in my room and cried a while.  Even though I had a 110% idea that she was Autistic.  I think mine was more just a relief and a release of emotions more than anything else.

 

Hearing Assessment in a Sound proof booth (she wouldn't let them do it any other way):  Tested her, the lady said "It's not her hearing".  She had the kindest smile and was very kind.  I told her I pretty much knew that, but it was another thing on my "check list".  Faith and I left and came home.  Don't think we stopped anywhere.

 

Pediatric Developmental Specialist:  She said "She is definitely on the Autism Spectrum" and answered all the questions we had at the time and even a time or two when I called her up later to ask more.  She said that she would get us the referrals we need to get her into a neurologist and geneticist.  Tommy, Angelus, Faith and I left there and went to Burger King.  A few weeks later I got a letter saying..."Saying:  Diagnosis:  Autism &Global Developmental Delay.  My thoughts where "I knew about the Autism, but what in the heck is Global Developmental Delay?"

 

We did her Speech Evaluation and the Speech Therapist said "I don't think she is Autistic because she doesn't do fecal smearing".  My thought was "Really?  Do they have to be doing stuff like that? 'Cause I'm pretty sure not all of them do that".  I left there very confused (he was the only one who ever said that, and has since changed his mind completely after having worked with Faith the past month and a half).

 

On to her Occupational Therapy Evaluation:  The lady said "She has classic Autism" and I would say it's severe, she seemed really timid to tell me this (although I asked her opinion because I was totally confused after the Speech guy).  She was very kind and had a great bedside manner as well.  After we left there, Faith and I went through the drive thru at Braum's. She got a milk and I got a shake.

 

The "final evaluation" so far...I took her into see the Clinical Psychologist and after visiting with Faith for 2min. she asked, has anyone ever told you she's Autistic?  I said, "yes, but we still had to come see you".  My Mom, Faith and I left there and went to a place called "Pasti's" where Faith went into full blown "melt down" mode.  A couple days later I had my own little melt down within the quietness of my car (I've got thinking time to spare in there some days). 

 

Tommy's reactions seemed a lot more "leveled" than mine.  Seems weird, but it is what it is. 

 

This all occured between 2yrs and 11mos to 3yrs 1mo. so all within a matter of a few months.

 

Still waiting on the Neurologist and Geneticist. Scared of them a little, too.  BUT, it's what's best for the little one so that's what's gonna happen.  

 

Break on Through....to the Other Side

Faith went to Speech Therapy this past Monday (yea!  She didn't sleep through it) and Occupational Therapy.  She had a "break through" the therapist said.  She let the principal hold her and take her around to check out the school (the principal is super nice, but that's not real common for her to let others do that), then upon their session being up she was ready to go and had herself a little temper tantrum stomping her little feet and looking at the door and very plainly said "OUT!" 2x.  Very exciting stuff (I wasn't there so this was relayed to me by my Mom and Dad who were both there).

Last week we got a letter from Angelus' school in which they have recommended him for the Gifted and Talented program because he Excels in Reading.  He is one incredibly bright boy.  I came into the house from work and he looked at me and goes "I got a letter from school and I don't wanna have a long talk about it."  I read the letter (apparently his Daddy had talked to him in depth about it) and I just asked if he wanted to do it. He said he did, so I said "Okay, we're done talking about it then".

We've switched out Faith's milk to Rice Milk and I think she does better with it and it wasn't anything like trying to switch her off of a bottle onto a sippy cup.  She drinks the rice milk just like she did regular cows milk, but I'm now having to figure out how to cook with it too as its consistency is different than the cows milk.  We'll get there, though.  I also found a few gluten free snacks.  Angelus likes all but the cereal bars just fine too and I have what I need to bake some bread I just haven't been able to quite yet.  I'll probably try to "give it a shot" this weekend.

Like I say almost all the time....I am one lucky lady.  I tell the kids ALL the time and it's true, Angelus is EXACTLY the little boy I wanted and Faith is EXACTLY the little girl I wanted.  It doesn't get any better than that now does it?!?

An end or a Beginning

Went in for our final Social Security appointment this morning.  The lady we had working with us was just a very nice lady, my experience with all the "professionals" has still been incredibly positive.  I'm sure that's a God thing and a prayer thing.  Thanks everyone for that. 

It's weird though, because we were approved for it for Faith and I know that's a good thing because a lot of things can get incredibly expensive and it will also help pay for equipment that I know will benefit her in the long run but it also makes me sad because it makes it all more *real* to me.  I know that's weird because we (my family) are living it and we *know* it's there but for some reason this just "hits it home" even more.  I'm taking it hard which just seems strange to me, but it is what it is. 

Now on to the next phase of it all...getting her appointments and referrals to Neurologists and Geneticists all set up.  I think I've put this one off because I'm just scared of what the neurologist might say.  I know that's silly too, but still...it's there.  One thing at a time, though.  Right?  Since the stuff with Social Security is completed and the therapies are in place (currently) on to the ones I've been putting off the longest.

Gonna get Angelus from school today and hang out with him this evening (just the two of us) for a little while.  He seemed to be looking forward to it.

A little about life...what a beautiful thing.

Faith had her 4th week of Speech therapy today.  Mom told Tommy that apparently she was a tad (lot) difficult for the Speech therapist.  It was bound to happen.  She does have tantrums and gets up-set and had difficulty communicating what is making her that way, so it only makes sense it was bound to happen.

I've been currently reading a little more about vaccines and the possible link to Autism.  I can't imagine how heart breaking it would be for a parent to have a normally developing child then all of a sudden they begin regressing.  Faith never did that.  She never got to that point where she was talking, or understanding what you were saying to her.  I believe in my heart of hearts she was born this way.  I also stopped her immunizations when it was time for the MMR because no one was really taking my concerns seriously and I didn't want to take any chances on it "getting worse".  Nor did I take any kind of vaccines when I was pregnant with her.  The "biggest" one they tried to push on me was the H1N1, but I have only had the flu twice in my life time, and wasn't ill during the pregnancy.  So I thought it may do more harm than good.  No way of knowing for sure, but still couldn't (and still can't) find any kind of a benefit from having done that. 

I'm not sure if I will eventually go ahead and have the vaccines done for her or not.  Like I've said all the information is so confusing and difficult to take it all in.  Biomedical treatments, more specifically Chelation therapy scares the crap outta me.  It's terribly expensive, but even if it were affordable in all of my research it's not a "right" option for Faith or my family.  I do understand the changing up of a diet.  Faith has digestive issues, but thank goodness she's not a picky eater so that's a good thing.  I am really thinking and researching even more a gluten free diet and wondering if that would help.  Gluten free, but not casein free because I can't see how taking dairy out of her diet would be a good thing.  So that's what I am currently looking into for her and changing up our diets some and by our I mean mine and hers.

Angelus has made a 102 on his first two spelling tests and a 101 on the last test he took.  He forgot to bring home his spelling words to practice this week, but he said "It'll be ok because they're easy for me".  He was also sent home with a 2nd grade reader that he just "blew" right through.  He said that he had to go into the 2nd grade teachers classroom and take a bunch of tests.  He and one other little girl were sent home with 2nd grade readers.  I pretty well knew even before the school year got started that he was above those "readers" they first sent home with him.  I think he's a little above this one but I'm kinda thinkin' a 3rd grade one would be just right for him at this point, but am convinced he'll be well beyond that before 1st grade is up.  I would love to say "he gets it from me", but he actually gets it from Tommy.  Tommy reads very well, and I read fairly slow when I was a kid so I know he gets it from Tommy.  But he does tend to read to me the most, so maybe just by that he gets it from me.

Tommy is learnin' "the way of the coupon" this evening and grocery shopping with his best friend Kenny who is (in our world) pretty much a master at it.  Coupons are good things, Tommy doing the grocery shopping is as well.  Thought I'd toss in a little about life this wonderful Tuesday and short work week.

What about the boy (Angelus)?

I know I usually post things about Faith and our journey with her diagnosis and how it's going and affecting the family, but I came across this article about Siblings and I just know that Angelus is the best possible brother Faith could have gotten for this journey in life.  It hi-lights all of the wonderful benefits that these Siblings either learn or already have that we, as parents get to see a little more clearly.

9. Five Benefits of Growing Up With an Autistic Sibling

By Dana Fialco, CenturyCityNews.com
Every sibling relationship is unique, but having an autistic child in a family can impact the entire family dynamic. While much attention is paid to the challenges and difficulties faced by parents and siblings of autistic children, growing up with an autistic sibling also offers many advantages and hidden treasures that can help shape an individual’s life and character. Here are five benefits of growing up with an autistic sibling:
1. Perception. Having an autistic sibling means growing up alongside someone who sees the world in a unique, individual way – a way that is often different from the mainstream population. It also means living day-to-day with someone who behaves somewhat-to-very differently than the general population. The sibling without autism learns very early on that the world we live in is not black and white; there is not necessarily a right and wrong way to do all things. With solid parental guidance, siblings come to learn that individuality is not scary or wrong, but valued and beneficial to society. The neuro-typical siblings go into adult life with open minds and the ability to see the world from many views. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity. The siblings can become real thinkers who see beyond face value, as well as diplomats who can navigate and reconcile conflicting points of view.
2. Perspective. Growing up with an autistic sibling means watching your sibling face each day with more courage and strength than most of us can fathom. Whether facing ridicule and cruelty from others or simply trying to get by in a world that was not built to accommodate their needs and way of thinking, kids with autism experience constant challenges. It’s difficult to witness this on a daily basis and not grow up with great perspective about what actually constitutes a problem. Granted, a pitfall of some siblings is to decide that their own real problems or feelings do not warrant attention or concern. However, with maturity and proper guidance from caring adults, the siblings can grow into adults who can balance experiencing their feelings with not overreacting to trivialities or falling prey to self-pity. This perspective allows them to remain calm during difficult situations, and to be thoughtful rather than reactionary.
3. Leadership. Siblings of autistic children often have to mature very early – arguably, earlier than should be required. By necessity, siblings often must assist their parents in helping, providing care, and teaching. These households can be chaotic, and siblings must develop a real inner strength to deal with the chaos, emotions, and frequent uncertainty. In families, siblings often collaborate – working on projects, carrying out chores, or playing together. Siblings often see each other’s capabilities and way of thinking from a different perspective than their parents or teachers. Whether older or younger, the non-autistic siblings naturally gravitate to leadership roles in the sibling relationship. They learn to stand up for their sibling to others, and advocate for their sibling’s potential to be seen and met with proper challenges for growth and success. Whereas this can present difficulty for some, in the end, it shapes strong adults with tremendous potential for leadership. They can grow into leaders who are comfortable navigating uncertainty and still delivering results; they become comfortable leading and motivating others, and they learn to see and foster the potential in those they lead. They see differences in working styles and ways of thinking as welcome attributes rather than frightening, difficult to manage, or unacceptable. The siblings become strong, compassionate leaders who are natural innovators, protectors, and advocates.
4. Courage. By necessity, growing up with an autistic sibling teaches a child to have the courage to stand out. Venturing into society with someone who does not necessarily conform or can have unfiltered reactions means there will be moments when the entire family stands out, whether they like it or not. For children and teenagers this can sometimes cause embarrassment. However, it is an important part of their development that will yield rewards their entire lives. It helps the siblings learn to be themselves and express their ideas, and not be swayed by the crowd. It helps them see public perception for what it is, and to know when to take or leave an outside judgment or opinion. A lifetime of developing strength and compassion provides the courage and pride to face the world head-on.
5. Creativity. Many of the other listed benefits have underlying tones of creativity, or produce creativity as a byproduct of the other attributes achieved. Siblings often have a unique way of communicating – sometimes even developing a shorthand or symbiotic relationship. Learning to communicate effectively with an autistic sibling takes a great deal of creativity. Autism manifests differently in each person, and there is a broad spectrum. However, communication and social awareness are almost always affected in some way. Siblings grow up learning how to organically communicate, reach, and connect with their sibling. Because those with autism often have unique and varied ways of thinking and seeing the world, their neuro-typical siblings often benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to temper individuality through conformity stretches the mind and creativity of a sibling. Many people with autism also have some extraordinary abilities. Not all are creative, but some do have creative talent, be it visual arts, music, writing, or simply expressing a worldview that is unique and insightful. An added benefit to creativity is when a sibling grows up in a house filled with this art. Even a non-creative interest exposes the siblings to aspects of the world that they would not normally delve into, and can feed creativity. If the siblings happens to share a creative interest, both or all the siblings’ creativity and awareness grows together. Some siblings even apply their creativity to solving scientific and sociological puzzles, including the puzzle of autism.
Of course, all family dynamics and ways of growing up present their own challenges as well as benefits. Siblings of autistic children naturally develop the tools to see the challenges thrown their way in life for the gifts they can be. They develop the strength and creativity to use those gifts towards compassionate, collaborative, individualized success.
Dana Fialco collaborated with her sister Tara, who has autism, and their parents to create the "Starabella" three-book audio series. Visit her online atwww.starabella.com.

Floatin' Along

We participated in our first ever parade yesterday.  Faith wasn't a fan of sitting on the float until we were going a little faster than parade speed.  She loved hearing the marching band, and riding in the back of a pick up truck.  All of these things she had never been exposed to before.  I am so grateful for the support group we have and those involved with it.  Angelus did alright with it. I think he would've had a better attitude toward it if he had ate something before we left (like I had suggested). 

He's been having a rough time lately.  Not sure why...he's just been way more cranky and disrespectful than usual (really only towards me, so clearly I need to do something different).  We still haven't heard anything from Social Security, but I know that would be awfully soon.  I would like very much for one of us to be able to get Angelus from school and pick him up from school and to go to all of Faith's therapy appointments instead of my parents having to take them to these things, but I know I have to work to take care of the family.  I'm just terribly confused about tons of things at this point.  Maybe clarity will come soon. :) 

Sept.15th I'm going to go see Temple Grandin speak, I'm very excited about this and ready to learn more.  The only bad thing about this learning more is there is so much information to ingest and sometimes it's very contradictory.  I'm sure we'll get what's right for Faith and our family figured out from it all.  At least that's my hope.

Sometimes....it takes a village.

Everyone has trials to go through in life.  Some are hard, some we just take really hard...but if we take a few minutes there's always a few "Unsung Hero's" along our journey.  For me, there's been many throughout my life.

When I told Tommy what I thought might be going on with Faith, he didn't say "she's just 3" or discount my opinion/view.  In fact in the 7 1/2 years we've been married I've never felt once like he thought I was incapable or that he "discounted me" in any way  .Jennie is always good for some laughs, ice cream and an ear to listen to my concerns about everything going in my life.  Dawn and Brandy Rowbotham (sorry if I just totally killed your   last name)....anyway, they have always seemed to have just the right words of encouragement at just the right time. For that I am more grateful than you'll ever know.  Russ and Melissa have helped our family out so much more than most anyone knows in many ways.  I am so glad that they are a part of our life.  The more I think about all of those who have reached out (and continue to reach out) in Tommy and my 7 1/2 years of marriage I keep on adding more and more to this list.  Crystal for her sillyness, it makes me smile when I need it most, Stacey and Ellie for your wonderful support of just life in general....all of the fantastic people who pray for us and our sanity.  Angelus giving me extra hugs when he can tell I really need it and him being just patient with how things are in life.  What a wonderful son he is.   It's just wonderful how many people do reach out when you need it.  My Mom and Dad still don't seem quite on the same line of thinking as what we are, but they are incredibly supportive with watching the kids making sure Angelus gets to school and back home, Faith gets to her therapy appointments when I can't make it.

Sometimes...it really does take a whole village. How lucky of a girl am I to have all of you? Plus so many more who have reached out to help educate/support and encourage us.