Daddy Mommy and Seth

Daddy Mommy and Seth
Daddy Mommy and Seth

Friday, December 9, 2011

The affect autism has on Seth, and so many others...

       I can honestly say that when Seth was diagnosed I had no idea how much autism would affect him.  Now I realize, alot comes along with autism.  It brings with it delays in motor skills, anxiety, ocd, sleep issues, sensory problems, routine and social issues.  Even muscle tone can be affected.  I know that many kids struggle with autism and other issues that come with that.  I aslo realize it could be worse for Seth.  My heart always goes out to any family living with struggle.  This is just Seth's story with autism.
I first want to say....I hear often from other moms and have this complaint myself, that people judge their child as a brat!  Before judging just imagine what it would be like to live in a world of confusion, anxiety and not understand many things.  Add onto that, poor communication and a sensory system that causes physical pain and makes your feel very uneasy in your own skin.  This is all day, everyday! I am sure if any of us had to live like that, or even worse than that...we would lose it!  We would act out or act up.  We would just meltdown over anything! So please, let's all have compassion for what these sweet little children are going through.
Seth is rigid with his routine and has alot of difficulty with transitions.  Anything can cause a meltdown.  He has trouble with play dates because of his anxiety and ocd.  It takes alot for him to share, and he is sometimes  unable to do so.  He also can not handle others messing or playing with his things.  Mostly the lack of control.  Seth always has to have control, or tries to have control anyway!  From closing doors, to how things are placed in his home.  I think alot of this comes from anxiety and not being comfortable in his own skin due to sensory integration problems.  His low muscle tone also plays a role in him not feeling "safe."  His muscle tone has caused delays in fine motor, gross motor, eating(chewing, swallowing, feeding himself.)  It also makes him have low stamina, he tires out very very easily!
I think alot of times Seth is just confused.  He does not understand alot of abstract ideas.  He memorizes responses to common questions.  For example, every meal is "snack "and every time you ask what he would like to eat he says, "chicken and waffle."  No matter when something took place, today or last's "yesterday." :)  He also has trouble learning and is behind when compared to typical kids his age.   

Seth loves lines and repetition.  He loves organization too!

  Seth has delays in fine motor, gross motor, self help skills, play skills and speech.  Not to mention the endless sleep issues!  All of this affects him every single day.  Autism is multi faceted.  It is not simple and affects most every aspect of development.  Seth is a trooper! He is the sweetest child and has more love than anyone I know.  Through it all, we will do everything to make his life easier and help him catch up with his peers.  If that doesn't happen, that's ok.  Because Seth is happy.  He struggles and has to work alot harder than most, but his little heart is so so very happy!!

Monday, November 21, 2011


"Welcome to Holland" by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you are planning to have a baby, it's like planning a fabulous vacation-to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland!?! I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Italy and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And the rest of your life, you will say,"Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Monday, November 14, 2011

This is a marathon!

Well...don't know if anyone out there can relate, but I'm beginning to realize that living with autism is a marathon.  I always thought that since Seth got intervention at such a young age, that he would get better.  I always thought if I gave every ounce of energy I had, I could still be sustained by the time he got "better."  I am now realizing that I was treating my life as a sprint, when it is in fact, a marathon.  Hard to swallow? Yes, I would say so!  For the past three and a half years I've been waiting for some therapy to kick in and act as a miracle.  I still have that hope, but I am learning that I need to accept.  I need to accept Seth, accept life with all the challenges and just be content.  Don't get me wrong, I would never turn back time, I wouldn't trade Seth for anything!  He is literally my heart!  My whole heart! I love him more than I thought my heart could ever love.  I do though, wish that life could be more simple.  Less routine, less screaming...more easy days.  So, I am working on accepting that this will most likely be a life long journey.  Better roads sometimes, bumpier roads other times.  It is hard to swallow when you thought life would be different, but if I always focus on what I thought I would have had...I will never see the true joy and beauty that I DO HAVE in Seth!  So, I will pray to accept more easily  and keep my head up for this marathon of life I have been given.  Realize my blessings and stay positive.  I hope that everyone else with daily struggles can try and do the same.  (even if it's just some of the time) :)

Thursday, September 22, 2011

A leaf

    I am so amazed and intrigued with how Seth experiences life.  Key word-experience.  He doesn't just live life, he experiences it.  Nature is a favorite for Seth.  Every sight, every sound, each smell, texture..all so important to him.  Seth takes note of every line, dot or dimple on everything.  He sees artwork in the sky. God's artwork. He adores just staring at the clouds, the moon, the stars.  His favorite sight is when he sees the line that a jet has made across the sky.  Seths loves watching trees and holding leaves.  He collects rocks, leaves, fruit, flowers...anything, and examines them.  Seth loves nature.  Of course he doesn't actually know the definition of "nature", he just loves the detailed natural beauty that is always a constant in his life.  Watching the rain or the trees is an instant form of tranquility for him.  I can't put my finger on if it is just joy, fascination or peace that Seth gets from nature.  Whatever it is, any type of nature is a constant source of smiles!  So just about everyday when Seth looks into his backyard at his tree and asks me to bring him in a leaf...I do.  The peace and joy Seth has when holding his leaf has taught me a huge lesson.  Look around, savor life..even the smallest details.  Admire nature and find joy in the little things around us.  Enjoy every moment.  Thank you Seth for showing mommy all the beauty around us every single day!

Thursday, February 3, 2011

sensory input

 Seth was diagnosed with Sensory Integration Disfunction at 10 months old.  He had trouble with organizing the input he got from all of his senses.  Visual, auditory, tactile, vestibular....the list goes on, it's a challenge.   He struggles day to day with activities and learning because of his sensory issues.  The greatest book that I have read thus far is "Raising a Sensory Smart Child" written by Lindsey Biel and Nancy Peske.   It is a must read for any parent who thinks that their child may have sensory issues.  We knew from day 1 Seth had issues because the slightest noise would wake him.  He hardly slept as an infant and would scream for hours on end.  When it came time for baby food, he couldn't handle the textures.  So we ended up seeing an OT and that was the start of the journey we've been on ever since.  My point for this post was to share what we do day to day in our house to give Seth the input he needs to function better.  There is alot to learn about Sensory Integration and it was all very foreign to me....research, research, research is the best thing you can do.  But when you come to the point of diagnosis, you then have to discover which senses are hypersensitive and which are hyposensitive to your child.  Seth craves deep vestibular and proprioceptive input.  We have a mini trampoline in our house with a handle, for him to  jump on.  We have a swing hanging in the doorway for good linear movement.  He loves to be swaddled tight in a blanket and rocked.  I inflate a twin sized air mattress and plank it to our couch.  He climbs up and rolls down (by far his favorite activity) this gives him the most beneficial input.  I hide wooden puzzle pieces in sand and bean filled buckets, which helps with his tactile defensiveness.  He paints with shaving cream in the bath tub as tactile play as well. Even snacktime can be a source of input.  Crunchy chips, chewy snacks and a thick milkshake through a straw, are all good ways to get the sensory input he needs.  There are endless options for incorporating sensory activities in the home.   When Seth gets the input he needs throughout the day, his nervous system is much more organized and he is better regulated.  For more good activities a great book is "The Out-of-Sync Child Has Fun" written by Carol Stock Kranowitz.  Feel free to comment any fun activities or tips that you use to help your child with sensory struggles!

Sunday, January 9, 2011

Bumps and Bruises

Self injury has go to be the most difficult thing for any parent to deal with. No one should ever have to watch the person they love the most, especially a child, cause pain to themselves.  Self injury can come in many forms, but Seth's form of choice has always been headbanging.  He has done this for as long as I can remember, it started at around 8 months of age.  Pinpointing why has been rather tricky.....It is a mix between frustration and sensory input.  Most of Seth's life, his head has had a bump and a bruise.  Some days he will headbang up to 10 times and some days one time or none at all.  If Seth has no way to headbang because he is in his carseat, he will find objects to hit his head with. He has used a toy car or even his own shoe.  When that fails him and he is left with nothing else, he will bite himself as hard as he can.  This has made me realize that pain gives him some kind of release, he feels as though he must to it when he gets upset, frustrated or loses control in a meltdown.  I just got a helmet for him 2 days ago, he hates it...hopefully he will get used to wearing it.  I just wanted to share a little bit of my son's struggle with self injury.  It is rare that I meet another parent dealing with something similar...I understand, I get it, I live it.  If you need advice, support or just an ear to listen....send me a message.  You are all in my prayers.

Sunday, January 2, 2011

what the autism puzzle blog is all about!

    Autism is like a puzzle...a puzzle with missing known cause or cure.  Just three years ago I didn't even really know anything about how life can change! Although alot still puzzles me, I believe knowledge is power and when Seth was diagnosed at 22 months old, I jumped into educating myself on how to help my child.  Though  I've read probably 25 books on autism, experience it the best teacher! I still have alot to learn and have days where I am totally lost in this new world I was thrown into, but  I have stories, thoughts, encouraging moments and some advice I have learned along the way.  Even just telling stories of day to day life can help other people to relate and feel like they are not alone in their life with an autistic child or children.  I hope that you can get something from my blog..even if it's just a laugh or a "me too!" moment!