Orientation

Parent Orientation Complete.  Let's get started!!!

 

So, all the other children yesterday were 2 or 3, and their parents had insurance to get them started right away.  I was happy for them, but sad for us.  Two things were made clear: 1) children should receive therapy before the age of 5 (already knew that), and 2) "50% of hours need to be before 3 PM the first year" (no surprise, but a constant stress for me).  I almost cried right there.  It didn't make me feel better knowing I was the only one in the group on the Waiver Program.  The wait not only took Aiden out of reach of therapy for TWO YEARS, it also puts us in a difficult spot when Aiden starts Kindergarden.  At this point, I have every intention of starting Aiden in Kindergarden at Adams School, and I will make that quite clear when we get settled with our staff.  I was instructed to talk to Aiden's Team Leader about this decision.  I HOPE he/she can make me feel a little better about our plans. 

 

One thing stood out to many of us.  I couldn't help but notice the parent next to me write in his notes, "no training...?"  Apparently, these aren't college trained therapists that are working with our children.  The line therapists working with our kids are recent High School graduates and/or college students with 40 hours of training in ABA therapy.  That is it.  Some of the therapists working with our kids will have very little experience.  One mom put it this way, "So, you are telling us our kids are guinea pigs?"  Had I known this ahead of time, I would have applied for a job at WEAP, become a therapist for someone else's child, AND MINE!!!  Who am I kidding though?  Who would have watched the boys?  And Ashton never would have been born.  I have to believe that the Lord's plan is part of all of this, Aiden will get what he needs, and still make great strides despite the delay in services.

 

Here are the things Aiden needs help with:

 

1) Communication.  Aiden can't carry a conversation.  Most of his speech is still echolalic.  He repeats lines from movies constantly.  For instance, Aiden just watched Peter Pan for the first time, and is repeating the line, "there is no splash Captain."  When asked a question about his new necklace, he is unable to state who gave it to him.  Obviously, this makes interacting with his peers very difficult. 

 

2) Potty Training.  Although Aiden is in underwear now, he doesn't initiate bathroom breaks on his own.  He shows signs that he has to go, but he will have an accident if you don't take him to the bathroom promptly.  Austin, my 3 year old, told me Aiden was pooping his pants the other day :(

 

3) Sensory.  Aiden will throw up and/or gag if he eats something that doesn't feel right in his mouth.  He hasn't eaten a fruit or vegetable in 3 years, and his food choices are limited to things that are very sweet, salty, or spicy.  Cereal, crackers, chips, spicy pumpkin seeds, salted nuts, cookies, and chocolate milk are the only foods he will eat.  :(  Aiden walks like a bear in public places, makes a "grrrr" noise often, and will hit his head and fall to the ground.

 

I'm hoping for miracles from these High School/college students!!! 

 

 

 

  

Holistic Medicine

Lost in a sea of doubt...

 

 

So, apparently, we all have leaky guts, which means the foods we are eating are poisoning our brains and causing all our woes.  Gluten and dairy are the devil, and we should all stop eating any form of them.  I spent FIVE YEARS studying nutrition, and the first time I ever heard of the "leaky gut" theory was during a session with a holistic physician.  At the time, I was single, a year out of school, and living alone.  I was very depressed.  In all honesty, I'd been depressed since the 6th grade.  My parents divorce tore our family apart, and I didn't handle it well.  Neither did my brother.  I struggled with an eating disorder in college, which I largely attribute to my unstable childhood.  Thankfully, my education in nutrition helped a lot.  I think I would still be lost in the world of an eating disorder without it.  Anyway, the doctor gave me a handout about "leaky gut syndrome," and said it was probably dairy that was causing my depression.  I did the elimination diet like he instructed to see what food/foods were the culprit.  Meanwhile, I was thinking...what?  Did I somehow miss the memo while I was busy working so hard to get through school?  But, I did the elimination diet anyway (you remove all potential food allergies and/or food additives at once, and slowly add them back in to test tolerance).  Guess what happened?  I FELT TERRIBLE.  Just terrible.  I remember calling the doctor and asking if this was supposed to happen.  He said, "most people get a headache".  I've never had a headache, and I still didn't have one.  I felt like I was in a fog and needed someone to pull me out.  But I didn't quit.  I was thankful when I could add things back in.  I felt so much better when I did!  Today, I'm happy to report, I've been depression free for 5 years.  I'm happier now than I've ever been, and that is because I have PURPOSE.  I would argue that holistic medicine DID heal me.  It was God who blessed me with my children.  Had I not joined the Church of Jesus Christ of Latter-Day Saints 8 years ago, I'm certain I would not have all 3 of my children; each of which give me more joy than I can possibly express. 

 

So, here I am again questioning modern medicine.  Although Aiden has progressed by leaps and bounds, I can still see the "look" in Aiden's eyes.  It breaks my heart to pieces some days.  So much so, that I understand why people turn to almost anything to try to take it away.  There isn't a day that goes by that I don't wonder if I'm doing what is best for Aiden.  Not a day.  What if I...is in the back of my mind every.single.day.  We started chiropractic care for Aiden a couple months ago.  His recent adjustment left him with a fever and a deep retreat into the world in which I can't pull him out of.  My heart is broken.  I hate that I can't do anything for him, yet, the things I try seem to hurt him more.  Aiden is now constipated because I removed whole grain wheat bread from his diet thinking I was hurting him.  I will note here that all of Aiden's labs came back negative.  No celiac disease, no vitamin or mineral deficiency--nothing.  So much for a "leaky gut"!  Aiden is absorbing something from his cereal, milk, and fruit snacks!!!  All that is left is time and prayer.  I need time to heal from all this, and so does Aiden.    

Finally!

Finally, potty training success!!!

 

So, nothing was working.  Aiden even started regressing after Christmas, because frankly, this momma needed a break from constant trips to the bathroom.  When I finally went back to training, I had to start giving him treats just to get him to sit on the potty.  The treats got him to sit on the potty again, but he wasn't going to the bathroom.  Frustrated and worn out, I turned to prayer.  I finally put Aiden in underwear.  It felt like the right thing to do.  Crazy idea really.  A 5 year old doesn't pee a little; he/she pees a lot!  I figured with the dog pooing all over the place, and Austin's daily poop in his pants, might as well add pee to the mix.  So, we did it.  Cold turkey.  No more diapers.  Aiden has never indicated that he has to go, and he only went on the potty when I caught him at the right time.  He pooped on the potty once out of pure luck.  Well, going cold turkey IS WORKING!  Aiden holds himself when he has to go pee, and hides when he has to go #2!  At least he can FEEL the sensation!  As long as I'm attentive, he goes on the potty 99% of the time!!!  No accidents!  I have to wonder if this would have happened a year or 2 ago, but I also know we had A LOT on our plate (and still do), and the last thing we were ready for was potty training.  Everything else seemed to take presidence.  Aiden was diagnosed at 3, so I wasn't thinking about potty training!  Then we got preggo again, and Austin took forever to potty train.  I forgive myself.  So, here we are.  From 3 kids in diapers to 1.  What a sigh of relief!!!      

Webinar

Notes from the Autism Society's Webinar, January 2013

 

 

Autism affects how the brain processes information.  It affects ALL areas of the brain.  Physical changes in the brain are seen at birth.  The brain is larger with more connections in some areas than in others.  Brain growth is faster.  This evens out with age.  --this is the work/findings of Eric Courchesne. 

 

There are varying degrees of severity, so it can be challenging to diagnose at times.  "There may be 11 or 12 different types of autism" (the reference on this one was unavailable, but the speaker stated this). To receive a diagnosis, there must be signs before the age of 3.  Siblings of a child with autism are likely to be diagnosed with ADHD (great, I didn't know that, but that makes sense since the 2 diagnosis seem to go hand in hand). 

 

Those diagnosed with Aspergers usually don't have a speech delay; in fact, their speech might be advanced.  The way he/she communicates however, is different.  Social interactions can be difficult for people on the spectrum.  They want to relate to others, but don't know how to.  Autism labeling is now being condensed into one diagnosis--ASD's, autism spectrum disorders. 

 

Genetic and environmental factors are likely responsible for autism.  Nothing was mentioned about the possibility that the immune system is involved.  "We aren't going to find a single cause".  I agree with the speaker on this one!

 

Austim is now considered an "epidemic" given 1 out of 88 children are diagnosed with the disorder, and the number continues to rise.  Adults on the spectrum aren't happy with the word "epidemic" because is implies that something is wrong with them.  Quote from an autistic adult, "it makes me who I am.  I wouldn't change that part of me".  :) :) :)

 

At age 6 or 7, some children no longer meet the criteria for an ASD.  Their brains don't change, but their coping mechanisms do.  Interesting...

 

90% or more have some sort of sensory concerns.  One sensory "channel" may be used at a time.  For example, a person on the spectrum may be able to listen to you (auditory), but not look at you at the same time (visual).  Some are underregistering (hyposensitive to stimulation), or overregistering (hypersensitive).  Info comes in TOO BIG or TOO SMALL (seek out bigger input i.e. spicy foods).  WOW--that explains Aiden's crazy diet a little bit! 

 

Coping mechanisms:

• use first/then statements
 
• "wait time" for reaction, don't repeat over and over--let them process info
 
• keep in mind many are visual thinkers
 
• try to understand the function behind behaviors (i.e. hand flapping to provide sensory input/control the environment)
 
• try video modeling
 
• be consistent

 

www.firstsigns.org first signs of autism