I got both of my little men in bed and sleeping. Lizze is with Gavin at Dr. R’s. Hopefully we will have some idea of what is going on with him. I’m waiting for them to get back.
Will update as I get the information.
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Our good friends Deb and Marc posted this to my facebook page. I don’t what to say about it. I haven’t stopped crying yet. I wanted to share this with everyone and thank Deb and Marc for their unconditional love and support. They are truly the definition of friend.
This truly portrays what being an AU parent feels like. All I could think about was our little Emmett John. This puts into words what I feel every day. Please pass this video along and spread Autism Awareness…..
We are struggling with PICA again with Gavin. Not sure if we are struggling again or we have just become aware of it again. Are there ways of discouraging it? Should we down play it? Or should we crack the whip so to speak?
How does Autism effect parents? This might be a delicate subject but people need to understand in order to support. In my experience there really 2 major categories. There are parents with kids Autistic from birth and there are parents with kids that regress into Autism.
This post will be in several parts. Below is part 1.
—Please understand that I’m by no means trying to compare pain here. I’m trying to help bridge the gap and help us understand one another.—
I can only speak personally about the regressive form of Autism. This form of Autism usually strikes around age 2 or 3. You don’t suspect anything at all because up to this point everything was perfect. All the milestones were reached on time. You have your whole life planned out. You have bonded with your child. You look forward to coming home from work and being greeted with a big hug and kiss everyday. You might be looking forward to coaching his or her team. You look forward to holiday’s and birthday’s. Especially 4th of July fireworks because your child watches them with amazement and wonder.
You are happy and at peace with your life. It’s everything you’ve dreamed of and planned for.
Then one day you wake up and your child is different. You can’t put your finger on it but things start changing and you brush it off as a phase. The phase never passes. In fact it gets worse. Your child will no longer look you in the eyes or always acknowledge you when you call. The hugs begin to stop as well as the kisses. By this time you have been to the doctor and they send you to a specialist. You probably have to wait for what seems like an eternity. When you finally get into the specialists office you hear the words that will forever change you “your child has Autism”.
To Be Continued:
Saw this posted on facebook. This is a great find and a MUST READ……
Keep this story going…..
If you are familiar with autism you probably already know there can be quiet a bit a drama that goes along with it. Gavin can be the king of drama at times. Today he got in the middle of the dog and cat “playing” and he got a tiny barely visible scratch from the cat. Not that it didn’t hurt but he started screaming like he had just been stabbed. Sensory issues are at work here to but honestly it was drama. He was fine for a minute then realized he could squeeze it to the point it would bleed. By bleed I mean basically turn red.
As soon as he saw the “blood” he totally lost it. He kept squeezing so more blood appeared and then he would scream some more. We sent him to his room and said when he is under control we’ll look at it again but we can’t do anything with him acting like that. He melted down on the way to his room. A bit later he emerged and was fine. Great job Gavin.
What’s so ironic about this is when he gets mad he will slam himself into his door over and over. He will hit himself and leave bruises. These injuries he never complains about but the tiny little scratch is the end of the world.
I started a community as an extension to this blog. I would like to invite everyone to check it out. I want it to be a safe place for all of us to go and share our stories. You can post what you need to post. I ask that you keep it clean and respect everyone.
I want this network to be able to provide information and support to those in the community who may be struggling. Sharing your story, good or bad may give someone the hope and strength they need to get up and move forward. Anyways, I’m not sure how this will work out but you have nothing to lose.
Here is the link Lost and Tired Network
Where I live in Ohio there is little to no autism awareness. Nothing was done or even mentioned for autism awareness month. There really isn’t anything dedicated to autism at all. How do I fix that. We do have a charter school. Gavin goes there and it’s amazing. There are no fundraisers or billboards. Autism needs everyone’s attention and everyone’s support.
Does anyone have any ideas? Aside from sharing our story with as many people as possible, I don’t really know what to do. I know there are more families out there like us but there is no communication. Do I form a support group or maybe an advocacy group? We have neither here. I know I would like to set up some type a local network providing people with resources and connections.
I feel so strongly that something needs to be done. I just don’t know what.
I need to ask you guys a favor. I have a poll to the right under my Gravatar about “Autism Speaks”. I just want to get an idea about how the autism community feels about the organization. I hear lots of things but don’t know if it’s just a vocal minority.
Thanks ahead of time for your help.
If you can’t find the poll here try this direct link.
Here is the short link: http://poll.fm/1yumv please feel free to pass it around. Post it to your blog if you want to. I really want to know how the community feels. The more the merrier.