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.