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

 

  

"Experts"

January 26, 2013-- "Waisman Center: A day with the Experts".  Here are my notes/thoughts/insights.

1. The brain is like a muscle.  Use it or lose it.  Our brains change with time; hence, the reason some children with autism develop seizures later in life and/or overcome/seem to "rewire" as time passes and with early intervention.
 
2. For 11% of people with autism there is a cause: Fragile X Syndrome, Rett's syndrome, Tuberous sclerosis.  For 90%, there is no known cause--yet.  They know that the brain is different based on MRI scans, and there are variences in DNA seen in autism.
 
3. 1% of children in the US are diagnosed with an ASD, 2% in South Korea.  Currently 1 in 88 children are autistic according to the CDC.
 
4. In 1992 there were 20 DOCUMENTED special ed children in WI schools.  In 2011, there were 8,885.
 
5. ASD's tend to be higher in families with a higher socioeconomic status (though some researchers say this is due to more access to diagnosis and treatment for this population).
 
6. Higher incidence of ASD's are also seen in preterm infants, advanced parental age (mom AND/OR dad over 35), 1st born children, short duration between pregnancies (<12 months = higher risk for an ASD), low birth weight babies, and possibly for those who have used fertility treatments.   These are not CAUSES, just trends.  One could argue that children who would have died under difficult circumstances, now survive with medical advances, giving another possible reason why ASD's have risen.
 
7. Current theories on why ASD's are becoming more prevalent are: 1) increased developmental screening, 2) expanded criteria/change in diagnostic practices for autism via the DSM manual, 3) increased awareness, 4) substituting labels--once "cognitively delayed" now "autistic", 5) dual "labels" i.e downs syndrome children are now tested for ASD's and some also receive this diagnosis. 
 
8. Immunologic basis to autism...?  I wish they would have touched on this more!!!  I couldn't help but think that while we were learning all the research/evidence based practices, what were holistic providers conferencing about autism?  How increasing vaccinations, our "contaminated" food and water supply, and drugs were causing autism, and how they could "cure" it with holistic medicine?  Could Aiden's chronic antibiotic use during his first 2 years of life damaged his immune system in some way?  I still believe that genetics PLUS environmental factors play a role in all this! 
 
9. Coming soon...May 2013 the DSM criteria for ASD's will change again (DSM 5).  These guidelines are supposed to be more stringent.  For instance, the person must have shown signs of an ASD before the age of 3.  Will this change prevalence rates????

 



Random

 

Therapy/School--I find myself overwelmed right now.  There are a lot of choices to make, and things that could change in just a few short months.  I've been praying to make the right choices for Aiden.  In addition to all the diet "stuff" I've been researching, pondering, and praying about, now I have to make a decision regarding Kindergarden for Aiden.  It sounds like WEAP will only take Aiden if he is available during the day.  I was so excited for Aiden to start Kindergarden, and now I don't know if he will be able to start.  Home school?  Are 1/2 day Kindergarden classes available?  Repeat EC?  He has made SO MUCH progress with just EC, that it seems counter-productive to take him out of the school environment completely.  Yet, I may have to if we can't find a solution.  I really want to go with WEAP, but we do have 2 other options--just not sure if they are going to be more flexible with scheduling or not.  I'm trying to take it one day at a time, but honestly, this is a tough spot to be in.

 

Nutrition/Wellness--Aiden had his well-check today.  I had some labs taken.  A basic panel, celiac screening, and vitamin/mineral check.  We weren't able to get enough blood for all of the labs today, but hopefully, we will get some framework of where Aiden is at nutritionally.  When I can afford to, I'd like him to take a daily multivitamin (I just ran out), Omega 3's (If I can find one he will actually take), and maybe a probiotic.  He still doesn't have any gut issues, doesn't seem to feel ill, or indicate that anything is bothering him.  However, he looks tired all the time.  He sleeps 9 + hours a night, so I'm wondering if his iron is low...?  I just don't want to see "the look" in his eyes anymore; it is a blank stare that indicates he isn't completely here...so hard to see that. 

 

 

Speech/Play--The more I pray, the more sentences Aiden says, and more he seems to "come out of it".  He played with playdo appropriately today.  He made a "hot dog" and cooked his "food" in the oven!  Maybe baking with Aiden is making a difference!  Normally, he justs sticks his toys in the playdo--in and out, in and out. 

 

I wrote down all the sentences Aiden said yesterday.  These are my "tender mercies" from the Lord.  I love it when he speaks!

 

"Can I see that?"  "Can I eat the...?"  "What is this?" "I'm so hungry."  "Daddy is mad" (he really was)!  "Austin won't share."  "I'm so scared."  (He was pooping his pants and didn't want to sit on the potty to do it.)  "That was fun Austin!" 

 

 

His words sound robotic and "scripted," but I love his sweet little voice, and I'm grateful for each new sentence!

5

Aiden is turning 5 next week!  Below is a review of our journey the past 5 years...

My pregnancy was normal, and without complications.  Aiden was born full-term.  The umbilical cord was wrapped around Aiden's neck when he was delivered, so he was taken away quickly.  We were told it was not uncommon for this to happen, and that Aiden just had a "slow start" (the words of his pediatrician).  We had to stay in the hospital a few extra days so Aiden could be monitored.  He received supplemental oxygen for a couple days.  After that, Aiden progressed like any other infant--maybe even a little quicker than some.  He sat up unsupported at 5 months, crawled at 7 months (I remember calling my mom the day it happened), and walked along things at 9 months.  He was walking independently at 1 year.  I remember distinctly that he waved "bye bye" at 1 year, and pointed at objects, people, and things.  Ironically, at his first year appointment, I remember the doctor saying that those things were "a good sign that he isn't autistic".  Strange that she would say such a thing.  Aiden said, "mom", "dad", and "ball" around 9 months.  At 18 months I began to realize that Aiden wasn't talking like children his age.  He no longer said words that he used to.  We were at a play date, and I remember a little girl talking to her mother.  She was younger than Aiden at the time, and that was my red flag.  At 2, the doctor acknowledged that Aiden was behind in speech.  We had his hearing tested right away (he did have a lot of ear infections), and started the Birth-3 program for speech therapy.  His hearing was just fine.  Aiden NEVER sat for any of the group activities during Birth-3, but he did well at snack time, and during one-on-one sessions with the speech therapist.  In the year that Aiden was in Birth-3, NO ONE ever mentioned a thing about Aiden having any other needs but speech.  When he transitioned at 3 to a speech program, things became clear that Aiden needed additional help.  The doctor, and the teacher began to "get it", while I still justified Aiden's actions (in my defense, he was my first child, and I was clueless).  Aiden didn't interact with his peers, and wouldn't sit for circle time.  He would lay on the floor, hit his head, play with blocks alone, but he didn't participate like the other children, and he needed a lot of redirecting and one-on-one help from the teacher's aide.  We waited forever for the Waisman Center, and I'll never forget the day we went.  After playing with him for a couple hours, the therapist confirmed that Aiden was indeed on the autistic spectrum.  Then she said, "I have no doubt that Aiden will live a full, complete life".  I remember looking at Abe and trying not to cry.  WEAP confirmed the diagnosis.  Aiden started Early Childhood shortly after that. 

Aiden has made tremendous gains in the past 2 years!  Aiden is doing much better with peer relationships (thank you Austin), and he is finally speaking in sentences.  They aren't always correct, and they sound "scripted" to me, but they are words.  Precious words.  There are just so many things we take for granted each day.  So, paper work filled out, books read, meetings attended, doors opened and shut, here we are 2 years later, finally off the waiting list for therapy.  Aiden will start therapy soon, and I can't help but wonder what our lives will be like, and what will become of Aiden after this; because really, this is all there is for hope other than my faith.  I sat with Aiden today, and as I hugged him, I said a prayer.  Please Heavenly Father, bless my son to overcome autism.  And if that is not your will, then let his light shine in his own way, that he may bless many lives for good.  He has already blessed mine so much.  Happy 5th Birthday to my sweet, special baby boy!  This is going to be a great year!