Birthdays and Ultimatums: Those go together....right?

Two items of business for today.

 

First item...today is a special day, people!!

 

Today is my youngest's 1ST BIRTHDAY.

Charlotte had a sorta rough start in life, for those who didn't know.  Here she is with her ADORING big sister the same day she was born.---------------------------------->

 

 

Think lightning only strikes once?...NEVER. At least not for me...and I have to be OK with that.  It's just reality for us.  We have a kid with Autism...it's just inevitable for us to have another kid with some sort of issue.  Charlotte's issue just happened to be Tetralogy of Fallot, which is the leading cause of "blue baby syndrome".  TOF is a type of congenital heart defect that manifests with the following signs:

1. a ventricular-septal defect: a hole between the ventricles in the heart (the lower 2 chambers), which causes red, oxygen-rich blood to mix with blue, oxygen-poor blood;
2. an overriding aorta, meaning you've got an artery pulling the blood out of the wrong chamber (the "blue", oxygen-depleted blood) and back into circulation throughout the body;
3. thickening of the ventricular wall of the heart, due to pressure issues; and,
4. a narrowing (or "stenosis") of the pulmonary valve, which results in less oxygen-rich blood for the lungs.

Soooo.   At the ripe-old age of 3 days old, Charlotte moved out of the realm of being an ordinary newborn and was diagnosed with a potentially life-threatening condition. 

This, after a very ordinary pregnancy devoid of the gestational diabetes I was used to with my other two children, a short 4-hour labor, and a natural, drug-free birth. 

Now, here we were, at age 1-1/2 mos...my nursing baby and I hunkered down into a tiny, extremely noisy, 4-seat medical air transport for the 4-hour trip to Lucile Packard Children's Hospital in Stanford, California, for an unwelcome education in all things concerning open-heart surgery. 

How did I deal with the prospect of my newborn's heart being stopped and her little body being put on a machine for life support?  There are some moments as a mom when you just "turn off" and go on auto-pilot....

We sat in that hospital for a little less than 2 weeks afterwards.  The resiliency of newborns is amazing;  they heal like nothing else can.  The doctors at LPCH are pros in the truest sense of the word...but they are pros who continue to LEARN and be CURIOUS about what they do.  They were big on pain control there, explaining that the human body does not heal as it should when stressed by pain.  Welcome to the world of narcotics, little girl!  Mama could have used some!!

Charlotte healed without missing a beat.  She even healed quicker than they expected; in the end, they were trying to think of reasons to keep us in the hospital, but couldn't.  Funny how you can find blessings in the middle of crisis mode. 

Today, Charlotte turns 1 year old.  She is vivacious, hilarious, and animated.  She climbs up stairs, onto her brother's bed, and (almost) onto the couches.  She's adept at crawling and has stood all by herself a couple of times in the past week.  It's like all of this never happened.  Maybe it never did.... 

Babies with Santa's are a great thing...

especially when you've been through

a bad dream...



Now as for Mr. Nathan, what can I say?  He's improving, especially in a lot of areas on his IEP...

...except for expressive, verbal communication. 

He's 5 years old, and he still cannot talk.  He can communicate, but I don't know he will be able to TALK.  He needs a communication device...not velcro PECS cards with no voice.  A DEVICE that will BE HIS VOICE.  I, for one, cannot sit on my hands any longer about it.  So I've emailed the team at school and laid my cards out on the table.  I've already been through this once with another school district.  But this school district has seen the improvements in the past couple of months.  Hopefully they get on board and support us in this goal.  They've seemed quite supportive in other areas...so here's to hoping!

I don't want to have to be my own son's speech pathologist, but if I have to, I will train him on a device myself.  The only reason I can see that the school district resists granting a device is budgetary.  That simply isn't good enough for me. 

I'm awaiting the response of the team after they meet tomorrow (Friday).

So here's to birthdays and ultimatums....I'd say both are different ways of going forward.  And I like progress. :)  Happy 1st Birthday, Charlotte Rose!!!!

Harshness and Reason

Sometimes I read some of my posts...and realize how shrill I sound at times.  I have many in my family who are members of the mainstream medical community: the same community I lambast openly for what I see as ignoring the medical truth about Autism, vaccines, chemicals, and treatment. 

I want all those reading this to know that, if I offend you, it is NOT personal.  It is NOT an attack on individuals, but on the ESTABLISHMENT.  The education that is handed down in med school is simply lacking and uninformed, when it comes to Autism. 

I would challenge anyone to prove to me it is not.

When I blog, protesting about the status quo, I do so out of my household's experience.  We have, indeed, been let down by the medical establishment.  The past 3 years have been a whirlwind of so many different feelings.  The feelings of this blog are resultant of my experiences with my child, doctors, teachers, school districts, professors, and colleagues (AKA: my fellow moms).  In my view, if someone speaks out of personal experiences, how can you blame them?

If you are reading this, and you are offended, one suggestion:  truly ask "Why?" 

Ask if there is some way you can see from my corner...

ASK me for evidence to my claims, because I'll admit I am not so eloquent at explaining them at times. 

READ what I have read.  Avoid Pharma-sponsored and govt-sponsored articles/journals, along with the inherent conflicts of interest.

JOIN the groups I have joined to hear the stories other families have....because our stories are the same.  Our children's health issues are the same.  Our opinions of treatment protocols for Autism are the same. 

And...guess what?...our outcomes of slow, but steady IMPROVEMENT are verrrry similar. 

It will be scary to you at first because it may fly in the face of everything you've known and have been taught.  I know it was scary to me.  Breaking out of an already-set paradigm is never easy. 

If EVERYONE were to do this....LEARN and KEEP LEARNING....I'm convinced you would see that it could be a brand new, better world for families with Autism.

So PLEASE...give real education a chance.  And join us! 

The ULTIMATE progress...

Progress is sweet, but it's never better than when others notice...and DOCUMENT...it.  Nathan had made MODEST improvements with the INTENSIVE efforts of the school district in the past, before we medically/nutritionally intervened.  But it felt like we were trying to sprint uphill, huffing and puffing, feeling the pull of every muscle straining to get the least bit of progress.  We THINK we can...we THINK we can...that was our mantra. 

After making progress, we always worried about keeping and maintaining.  Nathan has a history of losing progress he's made if he's not kept in a classroom environment.  We try to keep up at home, but with 3 kids, you can imagine...

After a year of regression in school, we came back to Kansas hungry for progress.  We began a biomed protocol 5 months ago, and started with AC chelation 3 months ago; after this round of chelation, we will have completed 9 rounds.  I got Nathan back into his old preschool program right before Thanksgiving, very nervous of how things would go, especially since the team here in Kansas decided to "throw out" the IEP we had written in ABQ.  Our hours were getting cut in half compared to what we received in ABQ, but I also knew that the school district here in Kansas was much more progressive in using current research.  The team in ABQ tried, to be sure, but I just didn't see much impressive stuff happening. 

Among the goals on the IEP written recently was:

Goal 1: Within 36 instructional weeks, Nathan will follow a minimum of 4 classroom routines with visual and verbal prompts.
Goal 2: Within 36 instructional weeks, Nathan will complete 4 closed ended activities with mature motor patterns.
Goal 3:  Within 36 instructional weeks, Nathan will imitate 5 actions with objects and 4 actions of others with verbal prompts.
Goal 4:  Within 36 instructional weeks, Nathan will match 5 identical objects from a field of 2.
Goal 5:  Within 36 instructional weeks, Nathan will follow 4 one step directions (which can include come here, sit, stop, give) in structured and unstructured settings.
Goal 6: Within 36 instructional weeks, Nathan will express his wants or needs (which could include words, pictures, or signs) to request at least 4 items in 4 or more areas.

Yesterday, we received our first progress report for these goals.  I was dreadfully expecting the usual "Modest improvement noted" statement scattered all over the pages.

I was shocked.  This report had no instances of "Modest improvement" at all.  I saw "Goal is met" and "Progressing well" everywhere. 

In fact, Nathan met and surpassed 2 out of 6  of his IEP goals.  Goals 4 and 6, MET.  Not only this, but he's close to meeting Goals 3 and 5, as well.  Even Goals 1 and 2 noted "good progress".

The IEP was written on December 1st.  Final data was taken on December 20th.  In less than a month's time, after moving twice in one year, this boy who has a disorder stating that he has difficulty with changes and transitions has nearly shut out his IEP.

...and so, although I'm tired and have had to whip up a dose of chelator every 4 hours for the past couple of days and will be doing it for another couple of days, I'll do it again and again.  If this is what progress takes, so be it!  It's just soooooo worth it, in my book!

New promise in APPS...

This Christmas, Nathan became the proud owner of an iPad, thanks to a few very generous family members.  Lately we'd been searching for ways to help him communicate more easily.  He has used Picture Exchange Communication from the getgo.  I attended a seminar in PECS about a year and a half ago; Nathan had a homemade communication book about 2 wks later, thanks to a local craft shop and a semester license for Boardmaker via my university studies. 

However, there are drawbacks to using PECS, one big on being that your child's "words" can get lost (especially if he has a strong propensity to play with them), you face a constant worry of your child not having the words he needs available, and your child may lose interest in the method.  Flipping through pages to find what you want and then having to pull off the velcro cards, stick them on a sentence strip, and then hunt down a person to give it to would be tiring to me after a while, too. 

We requested and got an Assistive Tech/AAC assessment done through the school district in Albuquerque.  The results were waaaayyy off from being accurate.  They indicated that not only did a more high tech device NOT suit him, but they wanted to start him over with PECS at Phase 1!  We have had a problem for some time now with Nathan's "true colors" not showing to his teachers.  This problem has been alleviated some by his reintroduction to his old teachers after our ABQ stay, but we still struggle to get teachers to really BELIEVE in his true abilities, expect, and require that he use his abilities to hold his own in the classroom.  He is allowed to get away with NOT communicating in the classroom...NOT a good environment for encouraging generalization of skills!  We're looking foward to what a fresh, new method can do, that's for sure. 

After receiving the iPad, we immediately got to work with getting Nathan interested in it.  We downloaded free games, interactive music apps, and drawing apps.  A game that rivals bubblewrap addiction, called "Pop Balloons", is now a favorite of his.  Last week, I found a tremendous AAC app called "My First AAC".  This app is especially for ages 4-7, is SUPER kid-friendly in its design, and can be customized!  It's an awesome starter.  $25 to turn a game console into a Speech-Generating Device???...yes, please!!  Families of young kids who cannot afford the $200 for large-scale apps like Proloquo2go will be thrilled with this one.  It's not perfect, but it's affordable and does the job.  Below is a screenshot of what the app looks like...pretty nifty, huh?

Since downloading "My First AAC", we've been following Nathan around, doing what in the SLP community is called "aided input":  expressing some of what we said by using his device paired with gestures and speech.  It's hands-down the best way to get a person going on a device.  After about a week of doing this, Nathan is now seeking out the iPad, scanning through the pages, finding what he wants, and choosing the particular item with very appropriate eye contact!  He so far is using "I want upside down" (a fave!!) and "Home".  Talk about a quick study!

Our next challenge is getting an appropriate case to protect the iPad along with jimmy-rigging a carrying case w/shoulder strap.  Then we can get that device more mobile, get out in the community with it, and make those teachers a bunch of BELIEVERS! :)