Thursday, November 8, 2012

Be informed, be proactive

Jacob has been engaging in some silly behaviors lately and I wanted to post them.  Every time he hears a loud noise or a song that makes him excited he stops whatever he is doing and stands up and starts running in circles as fast as he can.  When he hears the vaccuum he smiles and follows it all around the house.  He hugs the air vent and listens to it for long periods of time, no matter how much we pull him away from it.  He follows his shadow around the house and sometimes holds his own shadow's hand.  He mimics some tunes of songs that he hears on the tv by humming them.  He is now officially requesting the IPad by saying,"I I I".  YAY! He can't handle different foods touching each other on his plate, he always seperates them and when he is done he always throws the rest of the food on the floor.  If you hand him a ball, he will immediately run to a hard floor to drop it to hear the sound it makes.  He walks backwards while rolling his hands really slowly in front of his face.  He plays the IPad with his feet, even including puzzles.  Whenever he runs, he takes super fast tiny steps and it looks so hilarious.  He always takes off running the moment he sees his therapist.  He is so special and makes us laugh so much.  I just wanted to have these silly moments that our family loves so much posted to remember. 

I have run across a few situations lately in which very well meaning friends of mine feel that a child they know is on the spectrum, but that their parents have no idea.  They weren't telling me in a gossipy sort of way and never mention names, but they are genuinely concerned about whether they should mention anything to the parent.  They don't know if they should tell them or not.  This is a difficult topic for me, in particular.  Do I think the parents should be made aware?  YES, absolutely.  Is it an easy thing to do? No way.  Some parents take it personal.  Some parents who have children on the higher end of the spectrum believe their children are gifted because of their above average language skills and have a hard time accepting the diagnosis.  Even in my text books it states that many parents that have the hardest time accepting the diagnosis are the ones with children with higher IQ's.  Their kids seem like little "Einsteins" though socially they are very delayed or impaired.  Also, many people don't know or understand the early signs of autism.  Many people don't want to believe that their child may be on the spectrum.  The only problem about the parent not knowing or accepting it is that they are missing a very important opportunity for their child to learn.  The important thing to understand is WHY early intervention is so important.  People hear about early intervention and even talk about how good it is that people "catch" it early, but most people don't understand the true significance of detecting the signs and acting on it at an early age.  It is not only because of the extra years that they recieve therapy, but about the way the human brain works.  I wanted to write a post to inform everyone about the early warning signs and red flags so that you can help your loved one. 



1. Decreased social responsiveness
* Responding to their name
* Looking at people
* Joint-attention
2. Atypical Sensory-Regulatory Behaviors
* Increased mouthing of objects
*Unusual vision attention patterns
* Increased irritability


1. Adversion to social touch or proximity
2. Lack of appropriate gaze
3. Lack of warm, joyful expressions with directed gaze
4. Lack of sharing interest or enjoyment
5. Lack of response to name
6. Lack of coordination of gaze
7. Lack of showing objects
8. Repetitive movements or body gesturing
9. Repetivive movements of objects



1. No smiling in response to a smile
2. Lack of response to name
3. Not able to follow a point
4. Lack of initiating a request verbally or non verbally
5. Lack of joining into play with an adult
6. Lack of eye contact
7. Lack of pointing to objects desired
8. Repetitive behaviors or patterns
9.  Out of the ordinary tantrums
10. Difficulty with change or transition


Ok, so why is early intervention so important? 

Research proves that kids who receive intensive early intervention services are more likely to have improved long-term outcomes. Early intervention can maximize their learning potential by addressing communication, problem behaviors, play skills and overall skill development from a very early age. We know, through extensive brain research, that neural plasticity (the brains ability to learn new skills) decreases with age. When children are very young their neural plasticity is high, but as they get older it decreases. When this plasticity decrease, it becomes more difficult to learn new skills.  Autistic children in particular avoid things that are stressful or difficult, so the older they get, the harder it is to teach these skills.  This could cause them to become more isolated or withdrawn. This is not to say that any age is too late to begin intervention.  Intervention can help anyone with ASD at any age.  The fact is that beginning early, while the brain is still malleable, gives the child their best chances of success. 
I have a good friend who came to bring me dinner the other day as I was recovering from surgery.  She told me that she was beginning the process of getting her 2 sons into speech therapy.  Neither of them show any red flags of autism, however, she is so proactive in parenting that she has noticed things that other parents may have otherwise overlooked or just not acted on.  Her oldest son has a very hard time articulating his words.  Her younger son, who is 2, should know around 350 words and doesn't.  This doesn't sound like a big deal, huh?  Well, I think it is so fabulous that she is being proactive.  She sees a problem developmentally and is acting on it.  Whether the doctors tell her to go forward with speech or not, she is doing what she feels is best for her son.  Its inspiring to me to see moms who are on fire about motherhood.  They care about the details of their children.  I feel that mommyhood is a ministry.  With any ministry, one should strive to do their very best for the Lord. 

Colossians 3:23-24

English Standard Version (ESV)
23 Whatever you do, work heartily, as for the Lord and not for men, 24 knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ.
A while ago, I made a video of Jacob and his early symptoms.  If you would like to view it click on the link below or copy and paste:

Thursday, November 1, 2012


Halloween was so fun for the kids. I had to stay home to recover, but they all went trick or treating. Jacob had a panic attack about his dinosaur mask and refused to wear it, but his costume was still cute. I got a video of him at one house and he would hold his daddy's hand and walk up the driveway with all the kids and then reach for his daddy to hold him when the people would answer the door. I'm pretty sure he was just as excited as he was scared. I was just glad he was able to join in on the fun with his siblings and cousins
This month Jacob will be 2 1/2.  I feel like Jacob's autism is becoming somewhat more obvious.  He spins in circles over and over making strange finger movements.  He still is not requesting anything using words, except with his therapist when he occasionally says "on" for a specific toy, and he isn't calling me "mommy" or his dad "daddy".  He is using his PECS pretty well. The other day I was determined to play a game with him or read a book to him and I couldn't get him to look at me for more than a second.  I tried everything I knew how to do, but he just wouldn't play with me.  Its been hard the past few weeks.  I don't really know why I am feeling overly sensitive about it again, but I guess I just hoped that he would be further along by now.  Or maybe its just the weird feeling that I get every few months when I am reminded that although he is making improvements, he still  has special needs.  It becomes our normal and then I am reminded of what kids his age should be doing and then I feel sad about it.  Its usually when a friend with a child his age comes around and I see all of the things they are doing and saying.  As he is getting older, the things he should be doing are becoming greater and greater and that makes the gap so much larger to me I suppose. 
I had surgery recently and my step mom has come to help out and she keeps reminding me how sweet Jacob is.  His autism is severe, but his behaviors are not aggressive or violent.  The only real tantrums or fits of aggression that we see so far are when we keep the IPad from him or when we come in from outside.  Being considered severely autistic means that he has major developmental delay, major speech delay, and major repetitive behaviors.  Most people think that to be considered severe the child has to be very aggressive.   I am so thankful he is such a sweet boy and loves me.  He love to snuggle but he doesn't snuggle like a normal child, he likes to sit in people's lap facing out.  He doesn't do it with everyone, just a few special people. 
Grandma happened to be one of those people and I am so thankful they bonded.  One day, while he was doing some particularly strange movements and spinning, Grandma said,"He is beautiful to watch."  In that moment I stopped feeling so sad.  Normally each time he engages in repetitive behavior I feel a little sad for him.  I probably feel a little sad for me too.  My tummy gets a little nervous and my heart sinks a bit. This time it was nice to be reminded of how unique he is.  Since then, I have been watching him and seeing the beauty of his uniqueness.  I can't wait to see what God has in store for him.  My sweet boy is different.  He may always be different and I am learning to accept and enjoy it. 
I was reminded of this poem I read a while back describing what its like to raise a child with a disability.  I wanted to post it for those of you who haven't read it.  Enjoy your child, enjoy their differences and wait to see what God has in store for them.
Welcome to Hollandc1987 by Emily Perl Kingsley. All rights reserved
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're going to have a baby, it's like planning a fabulous vacation trip - 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 Holland 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 never have 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 you 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 for 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 go away... because the loss of that dream is a 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.


Autism Speaks Walk 2012

The Autism Speaks Walk was awesome this year.  We had friends and family there supporting us and it really was an amazing experience.  I am so honored that I was able to be in the Grand Club for raising nearly $4,000.  I hope next year will be an even bigger success!
On another note, I thought it would be important to mention that this year's walk was way easier than last year.  Last year, we had just gotten the diagnosis.  As I walked I took pictures of all the signs on the side of the path with the statistics.  I watched all of the kids with autism and how they acted around their families.  I cried and cried.  It was a sad day for me.  I can't explain the feelings exactly.  It was just rough.  This year, however, it was so different.  I walked with hope.  Friends and family came to walk with us and it was fun.  I watched the kids with autism and smiled, knowing that my special little boy will make me just as happy and they do to their families.  It was so much better than last year. 
I write this to those parents who have recently received a diagnosis for their child.  It does get better.  I know it will never be easy, but it definitely isn't hopeless and it does get better.  Its only been about a year and I feel so much better than I did before. Your child will bring more joy to you than you can imagine. 
I want to thank everyone who donated or participated in one of our fundraisers.  Thank you so much.  If you have any ideas of how I can do an even bigger scale fundraiser please email me.