A trip to the Museum

We took the kids to the California Science Museum yesterday.  It was a pretty cool place and the kids had a lot of fun.  Katlynn did really well.

She drew her first picture.

So proud of her.

Autism and Christmas can go hand in hand~ Enjoy!!!

I got this ornament last night from a friend of mine and it is by far one of the most meaningful ones I have received.  I really love it and wanted to share it. 

Thank you Miller Family for thinking if us and of Katlynn.

Here is a great poem I read today I thought I would share.

Autism Night Before Christmas

by Cindy Waeltermann

Twas the Night Before Christmas

And all through the house

The creatures were stirring

Yes, even the mouse

We tried melatonin

And gave a hot bath

But the holiday jitters

They always distract

The children were finally

All nestled in bed

When nightmares of terror

Ran through my OWN head

Did I get the right gift

The right color

And style

Would there be a tantrum

Or even, maybe, a smile?

Our relatives come

But they don’t understand

The pleasure he gets

Just from flapping his hands.

“He needs discipline,” they say

“Just a well-needed smack,

You must learn to parent…”

And on goes the attack

We smile and nod

Because we know deep inside

The argument is moot

Let them all take a side

We know what it’s like

To live with the spectrum

The struggles and triumphs

Achievements, regressions…

But what they don’t know

And what they don’t see

Is the joy that we feel

Over simplicity

He said “hello”

He ate something green!

He told his first lie!

He did not cause a scene!

He peed on the potty

Who cares if he’s ten,

He stopped saying the same thing

Again and again!

Others don’t realize

Just how we can cope

How we bravely hang on

At the end of our rope

But what they don’t see

Is the joy we can’t hide

When our children with autism

Make the tiniest stride

We may look at others

Without the problems we face

With jealousy, hatred

Or even distaste,

But what they don’t know

Nor sometimes do we

Is that children with autism

Bring simplicity.

We don’t get excited

Over expensive things

We jump for joy

With the progress work brings

Children with autism

Try hard every day

That they make us proud

More than words can say.

They work even harder

Than you or I

To achieve something small

To reach a star in the sky

So to those who don’t get it

Or can’t get a clue

Take a walk in my shoes

And I’ll assure you

That even 10 minutes

Into the walk

You’ll look at me

With respect, even shock.

You will realize

What it is I go through

And the next time you judge

I can assure you

That you won’t say a thing

You’ll be quiet and learn,

Like the years that I did

When the tables were turned…….

Merry Christmas from the Smith Family~

Christmas is just around the corner.

So we made a visit to Bass Pro for some fun and pics with Santa.

Playing together

The girls were upstairs in the playroom doing 24-piece puzzles together.  No fighting. they were sharing working together and having a great time.  It was a moment I wish I would have gotten on video. It was a moment where I realize I am doing something right and Katlynn is making her own in this world.  Granite it is just her sister, but it is still progress none the less.  Audrie is very advanced for her age, so to have her and Katlynn on the same level was magnificent.

Play therapy... Magical word of the day, the week and of the year in this house.

Anyone need models for autism advertising? She's a perfect candidate!!!!

Nothing like sisterly love!

Today is Voting day

So get out there and vote to make a difference for your future and the future of our kiddos.
No excuses.... Now leave the computer and go.

Have a great day!

Grant Denial

Well.... We didn't receive the grant from Act-Now.  I am kinda bummed. I really thought K would benefit from being in a recreational gymnastics program. She is not quite ready for a regular program and this special education one is really expensive. It is $70 a session.  Can you believe that?  Insane.

Sigh...

So I have been toying with putting K into the Mind Institute study in Sacramento.  A friend is doing it with her son and I know K would be a great candidate. Again... it costs Cha-Ching to fly out there and compensation is very small. It is called the Autism Phenome Project (APP).  I have like 2 weeks to decide if we are going to be a part of the study, but it isn't looking to promising with out schedules with my husbands job and my other 2 kids. 

Pumpkin Decorating (the easy way)

Okay... so yes, we took the easy way out.  I can't help but love these little faces that were given to the girls by a friend of my daughters.  The girls loved picking out the faces and adding them to their pumpkins and the best part... NO MESS.  Now, I know it's not traditional but we do have one big one to carve tonight all together.

Anyhow,  I thought I would share some pictures.  The little boy is my friends son whom I watch periodically.

Jenny McCarthy... she makes me cringe

Can someone PLEASE explain why this woman rubs me the wrong way?  I know it isn't just me... but I am playing with fire trash talking her when it comes to those she has convinced she is an autism savor and saint.

Well... for the record... she has done nothing for me except stress me out about a CURE and RECOVERY. In the beginning it was to the point where I put everything else on the back burner with reading all her books, applying for her grant and even getting accepted for it. Turns out that grant is more of a marketing research study and required my daughter to be loaded up with tons of supplements without seeing a DAN.  Are they stupid?  Seriously?  Anyhow... needless to say, I declined the grant.  My daughter is not a a lab rat.

I will do anything for my daughter.  I will try supplements, GFCF, equine therapy, etc. if it means it will help with her progression.  BUT.... I will not jump on this self supplementing band-wagon because everyone else is doing it and it worked for someone else's kid... and because Jenny says it works.

It took 7 months of ABA and OT therapy before we started really seeing any progress with Katlynn.  Then like overnight she blossomed in more then one area.  Even without a speech therapist her speech just increased like crazy.  I have no clue why or how and to this day it is still a mystery.  I can toot my own horn and maybe say I work with her pretty much daily on little exercises with speech and social interaction.  I model play and I do social stories and games.  She still have a LONG way to go and she will never be recovered, or cured, but my goal is to make sure she is loved and treated as a child and as an individual.

People... it is not rocket science to know that if you start ABA and 2 weeks later you start the GFCF (which IMO can never really be bad and yet,  I still don't know why I don't do it) and then 2 weeks after that you start some crazy supplement craze... then you didn't really give the ABA or the GFCF time to work it magic without the other additives.  See what I am sayin here?  Maybe I am just lazy for not jumping on that band wagon I talked about above.  Maybe, just maybe I look like some careless mom who isn't doing all this "autism stuff" to help my daughter live at her full potential or whatever hogwash someone I out there is surely thinking about me.  Jenny pushes and pushes all this different stuff claiming she recovered/cure her son Evan.  Who determined it was called cured or recovered anyhow?  Jenny seems to take credit for it or at least that is what I am reading between the lines?  Her son still has autism.  He is not cured.  He has simply learned through many different tools how to maintain behaviors and control his social awkwardness through  lots of lots of great therapy and supplementing.  He is still living with autism just not to the severity he had when he was young. Many claim it isn't even autism that is his disability. That information I am not sure about. I really have no solid proof on that one.

Don 't get me wrong... I do respect her for initially trying to do something good  for the autism community ( not like boosting her career) with her son's disability. She did make the term autism much more widely known then it was. So thank you Jenny for that. Now this talk about her possibly doing playboy again and the proceeds will go to autism.  Um... Okay. Am I the only one who see this being totally wrong and more for herself then actually for the autism community.  I mean this can be totally factual too... who knows.  Speculation at it's finest.

I will say this,  I loved her Belly Laughs, Baby Laughs and Life Laughs books. I even recommend reading them if you are newly pregnant.  They were so hilarious and fun to read.  I really loved and respected her after reading those, but then to go onto read her autism books... I was like, "what the #&*^?"  Where the heck did the comedian go?  Where did the Jenny I laughed with go?
She really should have stuck to those kinds of books.

To hell with Jenny... what about the people who have lived it?  Temple Grandin is a prime example.  Why wouldn't one follow her advice over a playboy model/comedian?  I am just curious where the logic stands in that?  Is it because she is a celebrity?  Why?  I really want to know.

Anyhow, I am rambling...

I am just really getting tired of the autism community not banding together and realizing that EVERY child is special and that there is no wrong way to help your child.  You do what works for you and for your family.  For me... it is simply trying to let my daughter live the most typical life she can without expecting too much from her, but also without letting her disability be used as an excuse.  I will stand my ground when I say these kids are smart little suckers and they can manipulate like nobody business and can get away with it because they "have autism".  I call BS on them.  

So if you take anything from this... just know I don't judge those who follow a DAN protocol which is what this might sounds like.  Not true.  I just think it was pushed a little to aggressively on newly diagnosed families and Jenny books give some false hope.  I will still continue to support TACA which supports Jenny and Dr.  Kartzinel because I have met some really wonderful people. Without TACA, I am not sure how I would have made it trough the initial news of Katlynn's diagnosis.  They don't seem to judge and genuinely want to help families help their children.  

 TTFN~

Summer

Another great Quote!!

"Every child is gifted.  They just unwrap their packages at different times."  -- unknown

Speech Excercises 10.24.10 ( Pause the music at bottom of blog page so you can hear video)

Not autism BUT special needs related.

I wanted to share with everyone about a documentary I was given a chance to view and review.  I came across the trailer on Facebook from a friend of mine and decided I HAD to get my hands on this dvd and see it for myself..It is called DEEDAH.

First, I must say how incredibly moved I was by this film.  I laughed and teared up all at the same time.  My oldest daughter watched it with me, and  she didn't even have to ask questions because the documentary explained down syndrome to a "T" by a young girl who happens to be DEEDAH. She is the sister to Johnathan who has down syndrome.  I felt as though it would be a great addition to an elementary school setting for all young children to watch.  I am sure many children do not realize how special these children are and how bright and capable they also are.  This documentary sheds light on everything from bullying and name calling to the capability and successes of a young boy with down syndrome.  

I was very humbled to be given an opportunity to watch it and review and and I personally give it 2 thumbs up and I hope to encourage others in the education field as well and parents and loved ones watch this documentary. 

http://www.deedahandme.com/index.php/

Initiating social play....

So Katlynn was in the trampoline and She said to Audrie, "hold my hand, hold my hand".  Audrie did take her hand and it only lasted about a minute before Katlynn was done with the physical contact of hand holding, but it is still very sweet to see her initiating it.  I think the music and movement class is really helping with that.

This was really nice to see after a rough week with Katlynn.  Moody and somewhat irritable.  Nothing super bad but just not her typical self, which is normally more typical.  She was just cranky.  Hoping that it was short lived and she'll be back to herself this week.  I think she was having gas and constipation issues.  We still haven't really resolved them permanently as they come and go. Anyone with suggestions?  My Dr. suggests prune juice, but K doesn't like it.  I don't give her OTC stuff, because the kid versions don't do anything and I am not comfortable with her having adult versions for a 3 year old regardless of dosage.  If a Pharmacist is telling me it can be harmful because it is not designed for children under age 6, I am going to believe them.

Self initiated pretend play

We went to a Music and Movement class last night and the Kinder-music teacher passed out some of those rhythm sticks to the kids.  Well... Katlynn crossed hers over each other and made an airplane out of them.  She was flying them in the air saying, "It's an airplane zoom-zoom".

It's the little things.

She amazes me everyday.

Keeping track of Katlynn's ever expanding vocabulary

So I decided I am going to track in this post new things she says daily or at least weekly.

 9/29/10- "I want to go down stairs. C'mon Audrie let's go!"
10/05/10- "Hair pitty fall.  Put my hair pitty in." (she meant pretty because that's what I call it. She had it in her hand and gave it to me)
10/05/10- "Open da gate. I wanna play train table (waits for a minute then says) PPLLEESSEEE."
10/08/10- "Give it me, that's mine!"

Found an Older picture

She was still autistic here I believe, but I just didn't know it yet. 
Katlynn~2008 (10 months old) 

Advocating

Is....

A job a parent with a special needs child will do pretty much forever.  Might as well get good at it right?  Well, I think I am slowly but surely learning how to do this and do it right.  Learning what is right and wrong, all about placements and special education law.  In fact, by learning what I have with Katlynn has helped me catch a HUGE mess up on the school districts part for Halle's IEP.  .  However,  I am not out to be nasty, I am just advocating for my daughters rights.  For her future.  What a lot of these IEP teams don't get,  is "we" (the parents) are part of the team.  I have gotten countless apologies and them admitting to screwing up.  But does this make it okay?  Do they think I should just blow it off?  Well, I am sure they don't and they're right.  They will be walking on eggshells with me for the next few years.  I say that with a smile.  I guess they forgot it is a team effort and I am part of the team. While I don't want to ruin my relationship with the school staff, I want to make sure they are aware I am an actively involved parent.  I have heard from them time and time again how very few parents are.  That makes me sad to hear.  Is is really true that parents would not fight and advocate for your child's rights?  To know what is being taught to your child and how they are doing in the school setting or placement?  I just can't imagine it.  I can't but I know it is true and happens quite often.

Maybe that's why they thought they would get off easily with Halle.  They assumed I was one of those parents who just expected the school to teach my child and that's it.  They assumed, I didn't give a damn.  Ha... boy we're they wrong.  As I have said before,  I am nice until you mess with my kids and then I get ugly.

Communication is key.

I know I kind of went off topic since this is Katlynn's blog, but I figure a majority of the readers have children on IEP's.

The faces of katlynn..

She is so photogenic sometimes I can't help it. 

I can't get away from it.

First, I was pouring my nose into every freaking book explaining autism and sadly made the mistake of starting with Jenny McCarthy's books. Second, I went onto read about how to "cure" children with autism. Everything from hyperbaric chamber, B-shots and chelation therapy. I was seriously on overload. I still have not tried any of those "recovering" tactics on the biomedical stand point. I have since toned down my research and determination to seek out all I can about autism and just live in the moment and enjoy Katlynn's quirks and play on her positives and you know what- it's working. I have tried just treating Katlynn like a normal child with no real special treatment. We include her in everything we do as a family and with our other 2 daughters regardless if it is going to be a hectic and chaotic situation. She is more work then the other 2 NT kiddos in some aspects but in many others she out shines them with steller behavior. She is vey accustom to outings now with multiple sensory stimulation. She adapts well to her surroundings and, I think mostly because we have been doing it from the begining. It is all she knows. When she was diagnosed we didn't stop doing normal things, we just kept plugging away.

I hear so many ASD parents debating about turning thier child with autism into a typical kid or a normal kid. The reality is, that in order for a child with ASD to become a more independant and functional member of todays society, they must act somewhat "normal". So the more they are exposed to the norm, I firmly believe, the more they will adapt to it. Many parents fear this because of negative behaviors, but ASD kids are smart.  They know how to manipulate. I think sometimes they are not challenged enough. It's like learning to play baseball. If you get hit with the ball a few times you don't give up. If you go to a public setting that puts an ASD child in overload causing a behavior meltdown, do you NOT ever return and just not go out again? Or do you simply keep trying?

Now, I am no Dr. clearly I am far from it. I am simply talking about what working for my daughter and what I view can be and has been successful with many other people out there who are on the spectrum.

Back to my piont in this post...

So, I got a fiction book from the library to read (I have an enormous love for books) and I just couldn't get into it. The only thing on my mind was highlighting another activity in an early intervention book I purchased or reading another chapter (again) from the Growing an Out of Sync Child. I just CAN NOT get away from autism. I can't. No matter how much I want to just quit for a while. I can't. Will this ever end? Will I ever enjoy another book not related to autism, special needs or sensory processing again?

Temple Grandin Kills it at the Emmy's

I was very pleased to see the HBO documentary win so many awards.  I have yet to see the movie.  I know, I know but I don't have HBO and nexflix won't have it out until Sept. 14th.  I have waited patiently for the past 6 months, what's a couple more weeks-right?

Anyhow, I have read almost all of Temple's books and all of them are such great books for parents with ASD. She is a true inspiration.

Please, please sit down and watch it as a family one day.  Even if you have no one in your immediate family on the spectrum.  It's worth your time to see how many people with autism think and feel.

First day of Preschool

A week ago Monday was the first day of preschool for the girls. To my relief there have been no tears and nothing but joy for school. Well for Katlynn at least. She absolutely LOVES it and looks forward to it every single day. I love her teacher and think fighting for her decision to get her into this school was a good one.

We're still plugging away at ABA, OT and then she has additional OT and SPEECH in school. She is still making a lot of progress with her speech and some days doing really well with eye contact Her social skills are also blooming. She is even initiating play with her sisters at times.

Working on trying to get her a grant for a therapeutic gymnastic program, so wish us luck with it. It's a really costly program and without a grant something we can not even consider, but something I think would be so beneficial to her.

Still working on potty training. Not much success, but still trying. She is becoming more aware of her BM and wetness, so it only a matter of time before it all will click I am sure.

Katlynns speech increase. 7.3.2010

Everyone has a little inner autism, right?

Everyone Has Autism

By William Stillman

Ever awaken in the middle of the night and realize your arm is “asleep” from the elbow down? It is a common situation experienced by nearly everyone at one time or another. As much as your brain is willing that arm to budge, it is deadened to the signals or impulses your brain is sending it. How many of you have actually had to physically move the asleep arm with your other hand in order to free up circulation and regain its use? If that same nightime paralysis were in more than one limb, or lodged in your voicebox, you would outwardly behave in ways that were autistic, just like any of autism’s “cousins” such as Asperger’s Syndrome, dyslexia, Tourette’s, Parkinson’s, Alzheimer’s, Cerebral Palsy, Lou Gehrig’s, ADD, ADHD, OCD, Sensory Integration Disorder, and a realm of other human experiences on a neurological continuum.

I’ve heard people refer to autistic children as “mutants” or functioning on par with a dog! This is hard to fathom when we consider that we are all more alike than we are different, and we all are truly brothers of one another. It is this kind of fear that the multi-billion dollar autism industry is founded upon—hastily, intensively, erasing all traces of autism in favor of normalcy. But in my work as an autism consultant, 90 percent of what I endeavor has absolutely nothing to do with the autistic one; it has everything to do with creating a transformation in everyone around that individual!

Noteworthy about those who would suggest that anything less than their perception of normal is unworthy, is that they fail to recognize a truth: at the present rate of autism statistics (one in 150 children and counting), it is they who will soon be the minority if they’re not first rendered “disabled” by virtue of genetics, deteriorating health, poor lifestyle choices and the aging process. They would surely wish for others to continue presuming their intellect regardless of the physical transformation their bodies will endure (which may cause them outwardly to present in an autistic-like manner).

The curious thing is we all have autism to one degree or another! We’ve all experienced neurological crossed-wires that result in motor-control blips, misfires and disconnects. You experienced an “autism” if you’ve:

driven from Point A to Point B, but upon arriving at Point B you have no recollection of the drive.

begun driving from Point A with Point B as your final destination, but today you need to make a special stop to pick up something or someone—and you end up driving your regular route, having forgotten to make the detour.

been driving along, and hear a song you like with the intention of listening all the way through, but soon realize your mind has wandered and you haven’t heard a word of it.

been driving along and hear a song you haven’t heard since high school—and experiencing the song immediately conjures memories of that era in your life. We create a strong associative connection in the same way with scents and smells we link in memory to certain people and places (a food aroma, cologne or perfume, or tobacco), as well as life-defining events such as an accident, a birth or death, or a disaster of some sort (you could probably relate details about where you were and what you were doing on September 11, 2001).

happened upon someone familiar while out shopping, but seeing them out of the context in which you know them disables you from recollecting their name on the spot and in the moment (although it may come to you after you’ve had sufficient process time).

had to physically retrace your steps in order to remember something, or you’ve misplaced something you suddenly realize you’ve been holding the whole time you’ve been searching for it (a pair of scissors or your eyeglasses).

lost track of time or self-awareness (no need to eat or use the bathroom) while immersed in an activity for which you hold great passion (painting, jogging, dancing, gardening, etc.).

had a case of the giggles so severe that you could not regain your composure until the experience ran its course.

ever been so angry, or afraid, and words escaped you in the moment.

absolutely had to scratch an itch and could not focus on anything else until you were so relieved.

calmed your anxiety by biting your nails, tapping a pen, shaking your leg, rocking yourself, twirling strands of your hair or toying with a piece of jewelry, or talking or humming to yourself.

experienced uncontrollable shivers so intensely that your teeth chattered involuntarily.

struggled to decipher the meaning of certain words in the appropriate context, such as “she shed a tear over the tear in her new dress.”

organized your items in your kitchen cupboards, bathroom, work space, or clothes closet in alphabetical order (canned good with labels facing out), by color-coordination, or at right angles.

come in from frigid weather and your hands are so numb with cold, you could not use them to hold an eating utensil, write longhand, or unbutton your coat.

had a song in your head that absolutely will not go away! It may be The Star-Spangled Banner, a commercial jingle, or a Barry Manilow tune. You may have even been awakened in the middle of the night hearing the song you cannot seem to banish. Imagine if that experience of being “stuck” with the song in your head (which precludes your thought processes) transferred throughout your body, or stuck in your throat and hindered your vocalizations?

These common experiences—“brain fades” or instances in which our body vetoes brain signals—affect us all, making us kindred in our humanity. But if you did them with any degree of regularity, you’d be eligible for an autism diagnosis! The next time someone suggests an autistic person’s hand-flapping or finger-flickering is maladaptive, gently remind them that they do it too, only it looks like the times they sit and shake a leg!

As much as we are all on a learning curve about autism (including some “experts” in the medical community), we are also all on a curve of diversity in our collective human experience. This begs the question: is there really any such thing as “normal?” Just maybe autism isn’t really as autistic as it seems.

© 2008, William Stillman

William Stillman is speaker, consultant, self-advocate and author of numerous autism and special needs parenting books. His Website is http://www.williamstillman.com./

Train for autism- Please consider supporting this cause!!!

Please consider supporting a great cause.  You can do so by donating or signing up for the run and join us on Feb. 6th, 2011, for the Surf City USA Half Marathon.

Here are the links to our pages:

Summer
Dave
TACA team page (sign up here to join us for the run or make a general donation to the team as a whole)

This a very important cause to us as TACA has been a huge support system for our family.

Success!!!!

WE DID IT!!!!!!

We got through Katlynn’s IEP with success. She will be in a 3 hour inclusion classroom with 10 students, 1 teacher and 2 aides. It’s been a hectic and stressful 2 months, but today finally paid off.

We are very excited for her as she starts this new journey of preschool effective August 9th along her sister, Audrie.

I'd like to thank everyone who helped out offering advice and support through this.  As petty as it might seem, it was a very emotional and enduring process and without everyone else, I think I might have had a break down.  So thank you so much Kara, Cindy, Edyth and everyone else who gave me advice for this matter.

This is only a small step in a life long fight, but at least it's in the right direction.

Roller Coaster Ride

As much heartache and stress as Katlynn’s special needs have brought to my life, it has been one up’d by my love for being her mother. Is it possible to love a child more and more each day through the good bad and the ugly? Even on her worst days I am so happy she is my daughter.

When things get harry and I feel like a volcano about to erupt I think about the joy and fun my kids have brought me on a daily basis. When I am in tears over Katlynn’s denials for a service of one sort of another, I think about how far she has come and I attribute most of it to me, her father and her siblings.

Day in and day out I could think about the “what if’s” and how my life would be different if Katlynn wasn’t autistic, but like I have said before, she is and there is no changing that. She will always be autistic and I am going to cherish the present, not dwell on the past and not picture the future.

I have learned so much in the past year and I didn’t realize how important a role as a mother really is or how many hats a mother wears in order to provide and protect her family.

It’s a roller coaster, but one I am willing to ride over and over.

Book review

I was recently given the opportunity to review a book by author Lisa Jo Rudy called: Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities.

 She talked about not sheltering our kids from the world just because they are autistic. The book covers various activities that kids with autism can be involved in which are available in the community. These include but are not limited to: scouts, various sports, camps, special interest groups, and YMCA. This book exposes parents to children on the spectrum of a variety of different community opportunities. There is a section which tells about various sports, groups and camps and how they are suitable for different types of kids. There is also a part that tells about various practical difficulties with kids who have autism like eating out and religious activities and how they can be done better. There is a resource section which gives more information about other materials. I think it is a great resource for families who feel as though they are stuck at home and that the community is not going to accept autism and everything that comes with it. This books goes to show there are a would of opportunities for kids on the spectrum to thrive in very typical settings and community outings.

We have never been a family who has let Katlynn’s autism get the best of us. From her birth and since her diagnosis, we have always been a get up and go family. In fact, I think because we are like that, Katlynn has adjusted to the flexible routine we have and behaves quite well with few tantrums and issues when out and about. Of course I always take into consideration mealtimes and nap times, but even if those are not on schedule, she seems to adjust to changes pretty well.

So, I figured I would seek out another opportunity to get the family out in the community for a morning of fun.

A friend told us about a bowling day called Bowlopolis where the kids can bowl for 2 hours and get free lanes, shoes rentals, pizza, drinks and ice cream. We decided to try it with the kids and who know bowling could be so much fun. The kids had a blast. In fact, I think Katlynn had the most fun of all. She really enjoyed following direction and playing the game. It was totally worth it. In fact, signed the twins up for a league for toddlers.

Hitting a brick road... HELP ME!

So.... back to the drama with Katlynn and services. Well IRC dumped her speech and denied my request for it again. So back to appeals I may have to go depending on what happens with her IEP June 14th. Can we seriously get a break here? Seriously? So, I am on a mission to find someone to do speech with her over the Summer and just private pay since we have no other choice.

I am also toying with the GFCF idea again. She seems to be at sort of a stand still right now with progression, so I need to do something else. Any ideas?   I prefer not to do medications or shots.  Just a personal preference for me.  That's something I might consider later on if need be for her, but right now it is not cost effective for my family.

Anyhow, I plan on working with her a lot this Summer and really fine tuning some of her behaviors by using a preschool setting and also working more on the potty training.

Nothin like good ol' California weather!

It was 88 degrees on Sat, the girls 3rd Birthday and we celebrated with some ice cream and water play.  Katlynn LOVE, LOVE, LOVED this water slide my in-laws got them for thier birthday! 

A lovely Quote from ~ Unknown

Autism is about having a pure heart and being very sensitive… It is about finding a way to survive in an overwhelming, confusing world… It is about developing differently, in a different pace and with different leaps.

The beauty is turning the BIG "3"

This will be her first birthday with her Autism diagnosis, but we aren't going to change a thing.  My princess will still have a birthday like any princess should.  I can't think of any place better then Disneyland of course.  So Saturday, May 15th (the girls actual birthday) we are taking them to Farrells Ice Cream Parlour and then we'll head to Disneyland either Sat afternoon or Sunday. 

I am so amazed at how much Katlynn has progressed and I am so proud to have her as my daughter.  She has to many amazing qualities and has so much love to give. 

Happy Birthday sweetie!!!!!

Autistic Artistry

So Katlynn has a minor obsession with pencils, pens, markers and most anything you can write or draw with.


With that said, the Mr. Clean Magic Eraser has become a best friend in my house because Katlynn prefers my walls as an art canvas to using paper or a coloring book. Now, I do want to encourage all the artistry I can, but I also can’t leave a writing utensil within arm’s reach of her if she is not in my sight or this is what happens. It is most of the time that this happens, I am on face book and it takes her no time to run from wall to wall creating her masterpieces.

Moving forward...

So we are changing up the programs for Kaltynn’s ABA right now. She is pretty non-compliant in some areas since she doesn’t want to do the non-preferred tasks, but she is getting there.

I still haven’t signed her IEP yet. However, I have decided I feel Clouds (where Audrie will go) is the best placement for her for now. We shall see what they say. We are going to have to call another IEP.

So my real reason for today’s blog is to give Katlynn bragging rights yet again. She was able to point to and say several shapes such as circle, square, heart, diamond, rectangle, oval and moon (or as we know it crescent). She is doing so well with not only pronouncing words, but using her words more often. We are so very proud of her progress.

F***ing IEP's

I am allowed to cuss all I want since this my blog.  I am really pissed, emotional and stressed about this whole ordeal. 

I have no clue what is the right decision.  My husband is clueless (sorry dear) and our family is really not much help.  Why does this have to be so hard?

I seriously do not know what to do for Katlynn's preschool. The vision I had in my head has gone to shit. Everytime I think about the school the IEP team recommended I am in tears. That has to be a sign, right? I have toured the place and asked a million questions, but I am still not sure it is the right place for her. I am not trying to make her be a typical child. That is not my goal. I do want her to be in the best and least restrictive environment for her growth and development.

I just wish it was easier and I wish I knew what was the right decision.

IEP was a BUST... :-(

Well we had Katlynn’s IEP for preschool on Tues. It was very emotional for me and ,in all honesty, it was a very sucky meeting. I think due to the fact I heard what I really didn’t want to hear. The team recommended a more intensive program for Katlynn other than the one I had been counting on for the past 5 months. The same school I was hoping she and Audrie would attend together that takes some mild/moderate special needs kids. Turns out they do not think she will adapt to it just yet and in time she will probably be able to transition to the same school, but for her now is going to have to go to a different one. I thought about fighting it… I still think about fighting it, but I know it is only temporary and I am not trying to cure Katlynn or force her into a setting she is not ready for. After reviewing all the reports I do agree she might not be ready for the inclusion school just yet. I am going to stay on top of the school and follow all her benchmarks and goals and as soon as she has met 85% of them, I am going to call another IEP and request she be given a chance at Clouds (the inclusion school Audrie is going to attend). In the end, my goal is to have her in regular Kindergarten if that is possible.


It is all so overwhelming dealing with IEP’s and special needs kids and I sometimes feel very few of my close friends and family can really relate. With this said, it could be a lot worse. I am thankful I have a loving, bright and affectionate daughter whom I have no doubt has a good bright future ahead of her. It will take a lot of work and encouragement, as well and a lot of intensive therapy, but I truly believe she will get there.

I want to thank everyone who attended the IEP in support of Katlynn and I appreciate everything you have done to help her.

It’s been a while I know, but I am a busy mom and wife and sometimes it’s hard for me to get caught up.


So we went on a mini vacation to Disneyland the 3rd week of March and it was a swell trip. All 3 kids had a blast as always. Disneyland is a wonderful place for kids on the spectrum; at least in my opinion. It is so big, and there is such a variety of things to do, it can please even the most sensory sensitive, tantrum throwing kids. I am so glad we renewed our passes again this year.



On that note… that trip really threw Katlynn off. She went from being my sweet, mellow go with the flow girl to a tantrum throwing, hitting, and non- complaint screaming turd. It was a stressful week. We sure as hell didn’t and don’t miss those aspects of Autism. This week though, she is like the old Katlynn; back to her old pleasurable compliant self. Boy let me tell you what a relief it is. I was really getting worried she was going to do this huge regression and that I had fed her something or had done something to cause it all. Of course I then have to remind myself that autistic kiddos are pretty unpredictable at times and sometimes any little thing can set them off. So we’re all back to one big happy family now.

Katlynn’s IEP is this coming Tues. Not looking forward to it and I think I have already ticked off some of the staff by asking for things and putting my foot down; not letting them walk all over me. I am hoping we get a lot of great goals placed for Katlynn and that this inclusion program I am fighting for is really going to benefit her. Yet another tricky part to autism is, what you might think will work for some kids, doesn’t. I am crossing my fingers that we all come to an agreement easily and get this IEP set.

Here are some random recent pictures of lil' red!

It's pretty obvious we don't do GFCF........yet!

Stiring up batter to bake a cake.  Cooking with the kids is always a HIT.

Halle is an awesome big sister.

Bio-medical intervention

I just wanted to add a quick update on Katlynn’s progression. She is doing quite well with ABA programs and is in fact going through them so fast they have to implement new ones every couple weeks if not sooner. Her words are coming so fast. She still needs a lot of tweaking on her language and pronunciation, but she is doing really well and getting much better at asking for what she wants. She is really into counting these days and saying her ABC’s. They are not always in order and she’s rarely completing them, but getting there and it is huge progress. She loves books and asks specifically for a certain police book every night. In fact, I have now checked out this book for 8 weeks in a row and thankfully, no one is requesting it. If someone does, I think I will have to go out and buy it for her.


I still have been torn with going down the bio-medical path with Katlynn. It is something that has been sitting in the back of my mind for 6 months now. If you are familiar with biomedical intervention and Autism, you will know what I am talking about. If you are not, then I will give you a quick course on it.
Some specialists believe children with Autism have bodies that are overwhelmed by a combination of heavy metals (mercury, lead aluminum), live viruses (particular from their vaccines), and bacteria. These toxins serve to slow or shut down normal biochemical pathways in the body and lead to the physical and mental manifestations. The ultimate goal of biomedical treatment is to remove environmental toxins from your child's body and repair the damage that has been done. There are many different routes you can take to do this. It can vary from supplements and medications to injections. It can even get a simple as changing to a GFCF (gluten-casin free) diet. Many parents with children on the spectrum swear by it, so I am contantly researching and reading up on it.

I went to a doctor (closest thing to a DAN I could get) back in Feb as asked several questions about biomedical, as I am not a pill pusher and very anti-medication if at all possible. She told me based on the blood and lab work, Katlynn didn’t seem to have any allergies to gluten or dairy/casin and everything else seemed to be very normal. I didn’t have her tested for metals because it is very expensive and from what the  Dr. told me, her odds of having a high metal count and anything lowering it to make a drastic difference was slim to none and she suggested I not fork out hundreds of dollars trying to do it since there is little known proof about metal levels in the body and autism. Dave and I decided to not do the labs for now. We figure since she is making so much progress with ABA alone, we didn’t need the added stress of medical bills on 1 income. She did recommend the most natural route which was GFCF. We had already tried it once a few months ago and it was a terrible experience. We all hated it. Katlynn was miserable for 3 weeks. Nothing changed. So we stopped it. I am not opposed to trying it again someday though. Just have to get everyone else on board to commit and follow through. If not EVERYONE in my house and those who watch Katlynn once in a while are going to stick with it…. It is pointless.

I have gotten into a few debates over bio-medical the past few months with other parents. People who have pushed it on me and when I decline have said I was selfish for not doing everything I could for my daughter. But in reality, I have more than just 1 daughter. I have 3. I also have a husband who is the sole provider. I had to think about the long term and how forking out thousands of dollars trying to cure (or recover) Katlynn was going to affect my family. Do I wish I could do more for her, of course I do. I think I have done quite well getting what I want out of my insurance company, the county and the school district. I still have a long way to go and I will continue to fight for her rights and be the sqeaky wheel. I will learn everything I can from every therapist she sees so that I can continue to help her when she isn’t doing services. I just had to draw the line somewhere. I had to make a conscious decision about what I thought was best for Katlynn.

So it is not that I am opposed to the Bio-medical intervention. It is just that I am not taking that route as of right now and she is still making tremendous progress without it. I figure I will go with the motto, “if it ain’t broke, don’t fix it” for now.

I am still extremely greatful to the TACA organization for all the vital information they have provided to me on Autism and helping children with this condition.

So keep checking back…

Autistic or Autism?

Which is proper you ask? Well, that depends on WHO you ask. To some parents is extremely offensive if you call their child autistic. It is “labeling” them. To me… it is merely one in the same. I have bigger fish to fry then to spend time complaining how you want to label my daughter's condition. Whether you call her autistic or say she has autism, it's still the same dang thing. She still has it and it is not going to change the diagnosis if you call it one or the other. So don’t feel as though you have to walk on eggshells with me when talking about autism or autistic children or when referring to Katlynn. Honestly, I don’t give a damn which one you want to use to describe her. I am just happy to hear when people are interested in talking about her condition.

Fast forward to the present!!!!

So… I am going to fast forward to the present since we all know Katlynn’s diagnosis; I won’t get all technical and medically related.

She is currently approved for 80 hours of ABA or applied behavioral analysis a month. It has been working wonders for her. She went from virtually no eye contact, communication and very little socialization to blooming in all areas. She is now starting to point and ask for things she wants while maintaining eye contact. She is using toys in proper play and form and is also becoming much more social with us and her peers. It is a true delight to see her smile, laugh and light up when she is happy. Tantrums and meltdowns are now rare. To be honest, she is the best behaved out of the 3 kids both at home and in public. The other two have become quite the handful and if anyone wants to borrow a kids or two for a day, I would gladly hand them over. Katlynn has finally stopped fleeing anywhere and everywhere and will listen when I prompt her to stop. She is still climbing some, but not like she was.

She is also currently receiving OT through Kaiser which helps with sensory and motor skills. We are hoping to find out in the next week or two if she qualifies for speech services. I have been fighting for all these services and while it has caused a lot of stress and anxiety on my part, it is proving to be working in her favor.

She will continue all these services until she meets the goals we have set for her.

She can now say a few of her ABC’s and count to ten successfully. She has also had some success going pee on the potty before bath time.

Both Katlynn and Audrie will start preschool in August 2010. I am hoping they will get into school together and it will provide the special needs for Katlynn while also serving typical preschoolers like Audrie.