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 :) :) :)