Illness & Gloves

Just when I start thinking autism isn't affecting our lives...

 

 

Aiden continues to overcome so much day by day.  Honestly, now that Aiden is talking, sometimes I forget that autism is even part of our lives.  Then, Aiden has an "off" day, and I'm firmly reminded that Aiden will always see the world differently than I do.  I'm slowly learning that even though he can TALK, COMMUNICATION is a whole different challenge. 

 

Aiden is sick right now.  At the doctor's office he was unable to tell her what hurt.  He just agreed with everything the doctor said.  Even pictures didn't work.  Aiden didn't understand what the doctor was asking.  Yet, his ears and throat are red, and his chest is so congested he sounds like a barking seal.  If it weren't for the persistent cough, I would have never even taken him in.  He doesn't seem to mind at all that his body is not well.   

 

Then there was the glove incident.  Now that the weather is colder, Aiden always wears a hat and a specific set of gloves.  Well, we lost one of the set while we were out and about, and Aiden would NOT get out of the van.  He was so upset.  We couldn't find it anywhere, and the place we were at was closed.  After an hour, Abe finally dragged him out of the car kicking and screaming, "NO daddy.  NO!"  It took 20 minutes or so of deep pressure to get him to come back to us.  The next day he talked about it over and over.  Lucky for us we found the missing glove.  Aiden was so, so happy.  Something so simple, and he couldn't let it go.            

 

 

I'm reminded of a phrase from an OT, "to some degree, we all have some autism within us."  I've pondered this recently as we've taken on the challenge of remodeling our basement.  My schedule/routine/time is completely thrown off lately, and I feel unhappy, stressed, overwhelmed, and unorganized.  The difference is, it doesn't disrupt my daily life to the point where I can't function.  I recognize that this is a stressful time in my life, but that it is also a brief moment that will pass and get better.  I hope for Aiden's sake that someday he can recognize that too.  The art of "letting go" is a great challenge for many people, myself included.    

Holidays 2013

Ward Party--Trick or Treat 2013

 

Playgroup--Halloween day

My little monkey--Ashton

Riding a Dinosaur--Austin

We put up the Christmas tree early this year!

Ashton had fun too!

 

Overcoming autism!

I've read about it, prayed for it, cried over how to help him accomplish it, and it is happening!  

Aiden is overcoming autism!!!

I remember when:

• Aiden spent HOURS playing with pieces of a tree in the kiddie pool.  
• He ran away constantly at the park, mall--we just couldn't contain him.  The day we almost lost him for good at the mall will never, ever feel like a distant memory.  
• The moment in my car when Grandma said, "goodbye Aiden, I love you,"  and Aiden stared blankly in the opposite direction.  It was shortly after his diagnosis. 
• Aiden used to suck his blanket so badly that I had to sneak it away to wash it.
• When Aiden was assessed for the Talk and Learn Program he didn't respond at all to the speech therapist and maybe had 2 words at age 3.  
• At age 4 Aiden was still in a diaper and I was dressing him.
• I questioned my profession, my faith, and my ability to make a rationale decision for my son.

TODAY:

• Aiden plays with toys appropriately.  He is especially fond of his pirate ship and likes to find treasure!  The day he climbed a tree on his own I nearly cried--typical boy behavior!  The days of pushing cars back and forth and pushing stuffed animals in and out of chairs are gone!  He still clings to at least 1 stuffed animal daily, but he plays with it appropriately.  Right now it is a stuffed elephant that he named "Eli".
• After that day in the mall almost 2 years ago, Aiden stopped running away.  It is almost as if that moment was as etched in his brain as it was mine.  I still remember the emotion on his face as he watched me weep on my knees in the middle of the crowded mall.
• Aiden always replies with, "I love you too."  This is a new development, and I love it!
• Other than major food diversions, Aiden no longer sucks on anything but a sucker!  Now, if I could just get him to eat a fruit and/or vegetable!
• Aiden is speaking in FULL APPROPRIATE SENTENCES as of August 2013--3 months into therapy!  He had 2 or 3 broken sentences earlier that year.  He recently stood in front of our church congregation and said, "I'm Aiden, and I'm a child of God!"  Best day ever :)
• Aiden can dress himself and was fully potted trained by the end of the summer (age 5 1/2 ).  He does have some accidents at school, but never at home.  His aide thinks he is having too much fun to get up and go to the bathroom.  They take him on plenty of trips to the bathroom.      
• I can let go of elimination diets/leaky gut theory/the GFCF diet that "saves" kids from autism (if that is working for you great, but it wasn't our answer), my faith is stronger than ever, and I know that I did everything I could to get Aiden where he needed to be to succeed!  I know he will always have challenges, but I'm proud of everything he has overcome with pure love, patience, therapy, and prayer.  

New Beginnings

A year of change....

Celebrating 7 years of marriage at Wisconsin Dells just the 2 of us (that hasn't happened for years)!

Austin's first day of preschool.  

He has been wearing a backpack like his big brother for over a year waiting for HIS big day! :)

Aiden's first day of Kindergarten.  

It was clear from the start that this was the right decision; however, we had to change programs and give up 15 hours of therapy a week to make it happen.  Meanwhile, Aiden is exceeding our expectations with the CHATT programming, and making amazing gains in speech!  Some day he will be able to answer the question, "what did you do at school today?"  Sometimes, you just know in your heart what is best for your child.  I'm grateful for that :)  

Our new dog Loki.  She is a sweet dog, and we love her!  The boys were so happy :)  Now Aiden doesn't have to walk his stuffed animals anymore, and I'm not the only female in the house!!!

DSM

The new guidelines for diagnosing autism based on the DSM:

http://autism.about.com/od/diagnosingautism/a/What-Are-The-New-Criteria-For-Diagnosing-Autism-Spectrum-Disorders.htm

So Aiden goes from the label of "PDD-NOS" to having an "autism spectrum disorder".  Does it really matter how you label it...???  Yes, if children start falling though the cracks and fail to receive any services!  Would Aiden have been diagnosed with a communication disorder instead?  Maybe, and then what?  He wouldn't qualify for ABA therapy anymore?  Glad we got to bypass that mess on top of everything else.  I can be grateful for that! :)

Summer 2013

Blessed and having a blast this summer!

                           Brandon's graduation party--Sun Prairie Athletic Club water park

 

 

Our swing set from the neighbors

I always knew all 3 swings would be full someday :)

Yard work.  He climbed up himself!

                          A visit with aunt Amy and uncle Scott ("AmyScott") in Sun Prairie

Cousin Brandon's bird.  Aiden loves animals, and still misses his doggie very, very much!

Pool play date with church friends

Freedom Fest for the 4th of July (a free carnival/fireworks show)

A hug from Aiden while they wait for a ride :)

My mom's neighbor let them jump on the trampoline, and yes, that is a sprinkler underneath!

Just chillin' waiting for Grandpa's firework show

Theatre class (a friend taught the class)

Madison Zoo

Little Amerikka for the first time!

My 5K--the boys were great!

The corn pit @ Rock County Fair

Daddy's home!  Last 2 week drills in July--EVER :)

 

 



4 Wheeling' with Grandpa!  Aiden said, "faster!" :)

Therapy

Aiden has been in therapy for a little over a month now...

 

 

Therapy is going slowly, and I appreciate that.  So far, we've had the perfect balance of summer fun and therapy hours.  Aiden gets about 10 hours of therapy a week at this time.  The goal is to get him up to 30 hours within 5 months (the Waiver program's "rules").  However, Aiden will start Kindergarden in September, so that may never happen.  At this point, I've stressed and cried so much over it, I've just let go.  Gratefully, I don't worry about it anymore.  When the time comes to make the decision--and it is a big one because we could lose funding altogether--I'll prayerfully do what is best for Aiden--even if that means I was wrong to keep him in school. 

 

Therapy is hard.  We have strangers in our home 4 out of 7 days for several hours at a time.  Austin wants to participate, but he answers the questions for Aiden, and that just doesn't work.  We are learning to let Austin play 1 game with Aiden, do one activity of his own, and then he needs to leave the room.  Today, I took him in my room to watch some cartoons while Ashton napped.  That worked out ok.  Our "rest time" has now become therapy time.  Aiden seems to be doing well with it.  He doesn't last much longer than 2 hours at a time, and I don't blame him.  As I've written before, Aiden knows his colors, shapes, letters, and how to write his name.  That is wonderful, but he still can't answer day to day questions.  "What did you do today?" "How old are you?"  You can't have a conversation with Aiden.  When these questions come up, he usually repeats the words from the question such as,  "old are you."  Eye contact is still fleeting, but improved.

 

I was upset with Aiden this morning because I thought he drank Ashton's milk (I make them the night before, so they are ready in the morning).  Aiden apologized, but I didn't realize he didn't need to until later that morning.  I found the cup in Ashton's crib.  Aiden had given his baby brother his milk.  I know it was Aiden because Austin can't reach that high or unzip the crib tent.  What a sweet, wonderful spirit Aiden has.  Those are the moments I appreciate Aiden for the spiritual gift he is.  Autism will never take that gift away from him.  In fact, maybe that is what strengthens his sweet empathetic heart.         

Loss

 

Saturday June 1st, we had to say "goodbye" to our dog.

 

 

 

 

May 2013

 

 

Having a child with special needs, a trying 3 year old, and an infant has been hard.  It was even more challenging when I was potty training 2 children at once, and then the baby started crawling.  If I'm being honest, having a pet was a challenge for me.  There were times when I really felt like it was best to give her up to someone who had more time and love for her.  Lydia had a problem from the start.  She just couldn't hold it.  She pooped and peed everywhere, and that made life even harder on me.  If it wasn't one of the boys, it was the dog's mess I had to clean up (I recently cleaned up a poop smear on Aiden's wall, and even after her passing, there was still pee to clean up on the landing).  But, Lydia was our family pet from the start.  When we had children, our relationship with the dog changed, but she was still our dog.  Aiden loved her so much I just couldn't give her up.  It broke my heart to think about the pain I would put him through if I gave her away.  To ease my burden, I had Aiden feed Lydia every day, and she was the one who walked her.  We went for walks nearly every day when it was nice out.  Lydia became Aiden's dog.

 

Saturday was a great day.  We spent most of the day with my mom and dad.  Lydia loves it there.  As soon as I said "grandma's" she got excited and literally lept out of the house with joy.  June 1st was no exception.  I remember making sure Lydia was inside while the boys were playing in the backyard.  My parents don't have a fenced in yard, and sometimes she ran away.  I remember patting her head lightly that evening, and that was the last time I saw her. 

 

Our family went for a walk and enjoyed smores by the fire with my mom and dad.  Their dog was acting strange.  She was standing in the hallway just staring at me.  Normally, she would have joined us outside.  There was poop in the hallway.  Normal for Lydia, even though her mess was usually close to a door.  I didn't think much of it.  Until it was time to leave.  Lydia usually sleeps under the chair at grandma's, but she was under the bed.  At some point, she had passed away.  My dad was the one who told me.  I was so shocked.  "What?  No...."  "what am I going to tell my little boy?"  Sure enough Aiden was heart broken.  He held her and cried when she didn't respond.  We went home that night in shock.  All of us.  What happened?  Was it something we did?  Lydia was 7 years old.  She was young, and there were few signs that something wasn't right. 

 

Aiden didn't handle it well.  He was crying in the car and kept saying, "Lydia fell down.  Poor Lydia."  I cried for Aiden.  My heart broke for him.  Thankfully, Austin seemed to be just fine. 

 

The next day we returned to grandma and grandpa's to say our final goodbyes.  Aiden walked right in asking, "where is Lydia?"  "We have to find Lydia."  More crying.  This time it was me.  I wish I knew what his sweet little special brain was thinking.  We decided to let Aiden see her one more time.  He said, "you found Lydia!"  Then he realized that Lydia was not as she once was, and he started to cry.  We buried her and said goodbye as we cried for Aiden and the loss of our pet.  She may have been a challenge, but we loved her.  She was ours.

 

The next day Aiden kept saying, "poor Lydia" all.day.long.  He no longer asked for her.  I hope that meant he knew she wasn't coming back.  I said a prayer for Aiden.  Help him handle this.

 

Yesterday it was my turn.  Shock turned to sadness for our entire family.  When the baby left food behind, I almost left it for Lydia, and for a brief moment, I tried to let her back inside forgetting that she wasn't here anymore. 

 

Funny how a family pet will make you appreciate life more, cherish the moments you have, and love those more deeply than you did before.

 

 

From my husband:

Lydia,

From the first day Marian laid eyes on you she said, "that's my dog."  You've been a part of our family since day one.  You were with us through the birth of all three of our boys.  Though you never really understood what the bathroom outside was, we learned to adjust...

 

He didn't finish this, but I found it, and felt it appropriate to add here.  He misses her too...

 

Goodbye Lydia.  You are missed!

Essays

Excerpts from, "Thinking Person's Guide to Autism" that meant a lot to me:

 

"How I know Vaccines Didn't Cause My Child's Autism"--www.community.advanceweb.com/blogs/ot_9/default.aspx

 

For the record, I know they didn't cause Aiden's ASD either.
http://www.voicesforvaccines.org/the-consequences-of-refusing-vaccines/

 

"Welcome to the Club" A letter to a mother whos child has just been diagnosed with an ASD (she is a parent of a child on the spectrum):

 

• "Don't worry; no one else sees it, I promise.  To the rest of the world, your're fine.  But when you've been there, you can't miss it."
 
• "You will doubt yourself.  You won't trust your instincts right away.  You will be afraid that you don't have the capacity to be what your baby will need you to be.  Worse, you'll think that you don't even know what [he] needs you to be.  You  do.  I promise.  You will."
 
• "You will question your faith.  Or find it.  Maybe both."
 
• "You are so much stronger than you think you are.  Trust me.  I  know you.  Hell, I am you."
 
• "You'll change.  One day you'll notice a shift.  You'll see the world through a lens of sensitivity.  The people around you will notice.  You'll change them too."
 
• "You will read more than you can process.  You'll buy books that you can't handle reading.  You'll feel guilty that they're sitting by the side of the bed unopened.  Take small bites.  The information isn't going anywhere.  Let your heart heal.  It will.  Breathe.  You can."
 
• "You will come to understand that there are gifts in all of this.  Tolerance, compassion, understanding.  Precious, life-altering gifts."
 
• "You will worry about your other children.  You will feel like you're not giving them enough time.  You will find the time.  Yes, you will.  No, really.  You will.  You'll start to believe they'll be okay.  And they will.  You will be a better parent for all of it."
 
• "You will find the tools that you need.  You will take bits and pieces of different therories and practices.  You'll talk to parents and doctors and therapists.  You'll take something from each of them.  You'll even find value in those you don't agree with at all.  Sometimes the most value.  A little of this, a little of that, a lot of love. "
 
• "You will help your sweet [boy] be far better than okay.  You will show [him] boundless love.  [He] will know that [he] is accepted and cherished and celebrated for every last morsel of who [he] is.  [He] will know that [his] Mama is there at every turn.  [He] will believe in [himself] as you believe in [him].  [He] will astound you.  Over and over and over again.  [He] will teach you far more than you teach [him].  [He] will fly."---www.adiaryofamom.wordpress.com

Avoiding autism cults:


http://www.blogher.com/identifying-and-avoiding-autism-cults

 

 

As we finally start therapy, I find our lives shifting in an unknown direction.  It is hard to have faith in the decisions we make for Aiden.  There are so many paths to take it seems.  The question is, which path is the best one for our son? 

 
 
 
 

 

 

 



Broken

2 years ago I started this blog so I could cope with the world of autism.  I couldn't sleep, so I wrote.  Today, May 18th, 2013 my heart is broken again.  I can't sleep, so I write...

 

 

After all we have been through the past few months--planning for therapy, striving for balance with school and services, phone call after phone call to make things happen, changing providers, and tons of prayers and tears--I was told yesterday that Aiden no longer qualifies for Waiver funding.  Shock.  Just shock. 

 

In all honesty, for a brief moment, I was relieved.  I don't know anyone who wants strangers to invade their home 20-30 hours a week.  I was worried about Austin and Aiden's play time, what that meant for our summer activities, and how little time we would have to just be us.  On the other hand, Aiden is barely potty trained, speaks like a 3 year old (and that is generious), and can't initiate conversation or carry one.  We are appealing the decision, because it just doesn't make sense.  My question to God is, why THIS?  Is therapy unneccessary for Aiden to overcome his challenges?  Should I just walk away from it completely, or should I fight?  I know I sincerely prayed that we would choose the right provider for Aiden, and I knew WEAP wasn't the right choice.  Does that mean that he doesn't need this at all?  My heart is torn and broken.  I spent the evening discussing Aiden's options with Abe.  We could, 1) get insurance through the military (however, we will be done in October and that will take away our primary source of income all summer), 2) get Aiden back in summer school (we opted out thinking he would be in therapy), and/or 3) pay for Aiden to do 5-10 hours a week (did I mention we are currently unemployed and make $600/month)?  Even taking hours this summer at the hospital will not make this financial burden light.  If anything, it just adds to the stress of how are we going to pay back our student loans AND pay our mortgage AND feed our family?  Broken.  Just broken.  I'm having such a hard time seeing the light at the end of all this.  If I go back to work, I win AND lose.  Win--Aiden gets therapy and we can pay our bills.  Lose--I will miss Ashton's milestones and 1:1 time with just him.  These are moments I will never get back, and they go so fast!  I'm not counting that as an option.  The kids need me, and paying for childcare is just another expense that we can't afford. 

 

 

What in the world is next???  Heavenly Father--please--we need a job with insurance so bad!  Please open a door or window and help us through this!


UPDATE:  On Thursday we received a miracle!  We have all the money we need for therapy!  My heart is filled with gratitude for all those that donated money for our son and/or said a prayer for us!  That was the toughest week I've had in a very long time.  It took all I had to pick myself up, defeat depression, and do what I needed to do for our family.  We are blessed beyond measure!  I've learned, 1) who my true friends are, 2) I feel strongest when I stay positive (even though it is hard), and when life drags you down, you find the most compassion for others. 

Aiden's appointment with CHATT is now on June 3rd.  FINALLY.  

Counceling

If all else fails, learn to take care of yourself!

 

I've been seeing a councelor for a couple months now, and I realized it is the only time I'm away from my kids.  I finally asked for some help and took a couple days for myself.  Just me.  For the first time in a long time, I realized that to be a good parent, I needed to take care of myself first.  Consistent exercise has been a major part of my life for years now, but I needed more than that.  I needed time to just be me.  Yesterday I went to an autism meeting, got some cleaning done, talked to a friend, and went for a 4 mile run.  Let me tell you--that was pure therapy.  When I returned to my kids, I appreciated them more, and I was more patient and loving.  It was what I needed desperately, but never seem to get.  I hate asking for help, but I needed to.  If I could, I would take at least 1 day a month for just me.  Thank goodness for my family.  I trust them with the kids, and I'm grateful they are willing to help. 

 

For me, there is nothing better than a good cry, a little cleaning, and a challenging workout!  

Research

These studies were extracted from the book, "Autism Spectrum Disorders What Every Parent Needs to Know" Expert Guidance From the American Academy of Pediatrics 2013.  

www.cdc.gov/ncbddd/autism/caddre.html.  Identifying biological traits of ASD's, and looking for causes and risk factors.

www.earlistudy.org Studies potential environmental and genetic risk factors that may be involved in ASD's.

www.niehs.nih.gov/research/supported/centers/prevention Studies exposure to chemicals such as lead, mercury, and pesticides on neurodevelopment disorders such as ASD's ADD, and developmental delays. 

www.nationalchildrensstudy.gov.  Examines the effects of genetics and the environment--air, water, diet, culteral and community influences, and family daynamics--on the health of children across the country from birth to 21 years.  This site is not working as of April 19th, 2013.


Now if only I had time to read them...

CHATT

Rough week...

 

All the paperwork is done, orientation done, schedule mapped out, and WEAP says we have to wait another month and a half.  I cried.  An 18 month wait turned into 26 months.  I wasn't happy.  So, I got down on my knees and prayed.  I prayed that I would make the right choice for Aiden.  I was worried that switching providers was somewhat of a selfish, impatient act, and I wanted to do the right thing.

 

I felt guided to call CHATT--childhood autism treatment team, and immediately felt good about changing our provider.  They are much more flexible with scheduling, and the doctor and I are on the same page about therapy hours for Aiden.  WEAP wanted me to do homeschool with 30+ hours of therapy a week.  Church would have been his only chance to interact with his peers.  He would no longer have time to play with his brother either.  Austin will be in preschool next Fall, and when he came home, Aiden would be in therapy until 5:30 PM.  It just didn't feel right at all.  It weighed so hard on my heart and mind, I woke up thinking about it.  But what choices did I have?  Thankfully, WEAP's delay was a blessing in disguise.  Aiden, welcome to KINDERGARDEN :) :) :)    

Winter/Spring 2013

Aiden's favorites for awhile...Peter Pan and Bambi.  He is almost always carrying Bambi, and he puts this costume on nearly every day since he watched Peter Pan for the first time.

 

Aiden is still a hugger.  I didn't even have to ask him to hug his little brother when I put him in his arms :)  Aiden-5, Ashton-9 months, Austin-3

 

Sledding!  Aiden and Austin just loved it! This was the winter that never ended...

 

Aiden likes to hide in the closet.  I gave them flashlights, and they were so excited when I shut the door :)

 

Again with Bambi.  You can kind of see the scars from the rash under his nose when he got really sick.  Thanks to that rash, I knew to take him into the doctor.  He had strep throat, and I had no idea.  He acted completely fine.  Aiden is rarely sick, but after that experience, I wonder how many times he was and I had no idea...

Easter 2013 at Grandma and Grandpa's house.  I was amazed that Aiden hid eggs on his own the very next day!  Imaginative play is coming!!!

 

Abe gets few moments with the boys due to his rigerous schedule as a student teacher.  Glad I caught this moment :)  I'm so curious what our Heavenly Father has in store for us when he graduates in May.  We have been students for 5 years...so grateful to start a new chapter in our lives!

 

 

Abe graduates, Aiden starts therapy...here we go 2013!

 

 

 

 

 

 

 

 

Team Leader

 

Sadness...

 

I met with Aiden's team leader last week, and it went so poorly, I had to phone a friend for support afterwards.  I don't know why Aiden attending Kindergarden means so much to me.  It upsets me that I may not have a choice but to homeschool Aiden in the Fall.  The Waiver program has changed since we went on the waiting list.  They have 2 options: 15-20 hours a week, or 30-40--no more 20-30.  It sounds like we will no longer be able to reduce hours once we start, which means Kindergarden just won't happen if we go with 30-40 hours/week.  I can't expect that many hours of attention from Aiden.  I argued that I didn't feel Aiden needed 30 + hours a week, and that I wanted him to be with his peers next Fall.  She was very clear that: 1) the science isn't there for <20 hours a week, and we should start with 30 for at least the first year, 2) stating that Aiden will attend Kindergarden in the fall would send up a major red flag for the Waiver program, who would be more than happy to kick us out if we go under hours.  I hate this so much.  Of course, I'm going to make the right decision for AIDEN.  When fall comes, I could completely change my mind, and I will be the first to admit that I was wrong.  However, I never do what doesn't feel right, and this just doesn't feel right at all to me.  I feel completely inadequate as Aiden's teacher, I have 2 other children to care for, and I feel there will be opportunities in the school district that I just can't provide--that includes opportunities to interact with peers!  Some will say I'm crazy, this is only 2 years, and the therapy is much more important.  I can't help but wonder though...what if I wasn't a stay-at-home mom?  What would happen then?  Aiden just wouldn't get therapy?  I don't know what is going to happen when Abe graduates in May.  Are we moving?  Can we even find a job?  Where do my children's education fit into all this?  Aiden is going to get a whole lot of attention starting in April, and I can't help but worry about my 3 year old.  Aiden and Austin are so close; what is going to happen to their relationship?  What about Austin's needs? 

 

If I could have it my way, Aiden would do 30 + hours of therapy all summer (we've already decided against summer school this year), then decrease his hours to 20-25 when he starts Kindergarden in the fall.  The only way that seems possible is if Abe gets a job and we actually have insurance.  Otherwise, we take the chance of losing Waiver funding, and starting all over.  I simply won't let that happen. 

 



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!

 

Facts

Early 1940's--Leo Kanner, a child pschiatrist @ Johns Hopkins University Medical School described 11 children with similar behavior characteristics: 1) social isolation/withdrawal, 2) communication difficulty, and 3) ritualistic behaviors.

Bruno Bettleheim believed that autism was the result of ineffective parenting.  He believed children found their world hostile and scary, so they developed unusual behavior.  At this time, children were taken away from their parents and put in institiutions.  Mother's were termed, "refridgerator mom's".

Early 60's--Bernard Rimland found that autism was due to abnormalities in the brain--NOT due to poor parenting (1964).  His son was autistic.

1960's--Ivar Lovaas from UCLA discovered that with behavioral therapy, children with ASD's could learn given a highly structured enviroment with rewards and punishments in a consistent manner.  His work continues to be used today in what is called ABA--applied behavior analysis--therapy. 

1970's--Children with ASD's were no longer taken from their parents.  Teachers were instructed on "behavioral techniques".  Parent's play an important, active part in therapy.

2000--Austim is thought to be a disorder of the central nervious system.  Some children with ASD's have abnormal levels of neurotransmitters--the chemical messengers that transmit information.  Many studies indicate a genetic component to ASD's, but researchers believe their is likely an environmental "trigger".  Although there is no clear pattern, children with ASD's have a higher likelihood that they will have a history of encephalitis, PKU (inborn error of metabolism), tuberous sclerosis, maternal use of cocaine, or anoxia (loss of oxygen).  Aiden had anoxia at birth, and was put on supplemental oxygen for 2 days.

1999--Thimerosol (the preservative that contains mercury) removed from vaccines for children.  It continues to be used in the adult flu shot.  No studies to date link autism to vaccinations, although many people and healthcare providers continue to feel there is a connection.

CDC 2012-- 1 in 54 boys will be born with autism.  1 out of 88 children will be diagnosed with an ASD.   

IQ tests are not good indicators for children under the age of 5 because they are socially and verbally biased.