Tuesday, August 7, 2012

Precious little things......

Andrew has had a difficult first week of school.  Sleep issues beginning again and anxiety due to the change of going back to school.  He is now chewing and biting the inside of his lips and jaw to the point of bleeding and swelling.  Visited the neurology yesterday for a routine visit.  This seems to be our primary source of care lately.  I hear the words echo again that we have previously heard this summer from two of his other doctors.  Andrew has no medical basis for his lack of progress and regression other than lack of appropriate supports and services.  He isn't taking any medications nor does he have a medical condition to warrant the lack of development.  We have been advised that if he continues with the same level of inappropriate supports and services that this path of development is more than likely to continue.  This is what happens when you have a child with autism and they don't receive appropriate supports and services.  The most important years in a child with autism is between the ages of 3-5.  This time of development can make or break their future.  I am heartbroken, saddened, and angry all at the same time.  Our local school district has failed Andrew.  He has been in the school system for 2 years and due to inappropriate interventions he has regressed in some areas and made no progress or very minimal progress in others.  It is time that they abide by the Federal laws and provide scientifically proven interventions for him according to the law. 

The precious little things that are now gone....
At the time Andrew entered school in 2010 he was making very good eye contact and would smile immediately.  He would look until others looked at him and give a beautiful smile.  Now there are many times he doesn't respond when others are attempting to get his attention.  Many times if he does make eye contact it's through a quick glance.  There were times when he use to just stare into my eyes.  How I miss that so much!  Andrew has never been able to pucker his lips for anything, not even a kiss.  However, he had his own way of giving a kiss.  He would lean towards me and put his lips against mine.  He had even began doing this without being prompted.  He would many times look and give the biggest smile after a kiss.  It was so precious!  I'm longing for the kisses to come back!  Andrew could sign for 'more' before he began school.  It started with modeling it for him and he would reciprocate.  Then he would sign 'more' when prompted.  Later, there were times he would do it when he brought his cup for more milk without being asked.  I can no longer get him to sign 'more'.  He will try a partial clap at times.  Before, the sign was more pronounced.  I remember we use to ask him if he wanted to go 'night, night'.  He would reply with shaking his head and saying, "na, na" over and over for 'no'.  It was so cute!  He would even get loud at times.  Now, he no longer responds.  Andrew had began telling others 'bye' by saying it without the 'b' sound on command and at times without.  Now there are times we can't get him to say it even with a prompt.  I miss these precious things that were once there and are now gone. These are just a few of the precious little things I miss from my sweet Andrew.  To watch him regress into his own world has been so heartbreaking.  I wish I knew two years ago what I know now.  I don't think that the local school district or the previous teachers realize what they've done.  The school district is about to find out!

However, there is still hope.  Even though he is approaching 5 in September, he can still make tremendous progress with the appropriate supports and services.  According to the latest research there may be permanent damage that can't be undone, but he can still make tremendous gains.  Through my determination I will go to whatever length possible to get him the appropriate services he needs to make progress.  I will not give up! 

I have shed many tears and lost hours of sleep over what has taken place.  Many days I get tired of having to fight a system that doesn't believe in abiding by laws that are meant to protect those with special needs, such as Andrew.  I will continue to be his voice and never stop fighting for him.  Our children with special needs deserve the same opportunities to learn and grow just as much as any other child. 

My hope is that all those with special needs children (and those with family members or a friend with special needs children) will come together and fight the system that isn't providing according to the law.  We have to take a stand to make a difference for our children and others to follow in the future!      


  1. My attention was brought to your page by a friend of a friend of a friend..etc. who had heard about your story, I am trying to educate myself for when my daughter begins school. I feel like since Im new at this I might not know she isnt getting services! What services was your precious boy not recieving? Did you ever find out why they were't providing them? Can you recommend some websites to look at?

    1. Thank you for commenting. I'm more than happy to help educate parents on what their rights are and what the special education laws state. Here are a couple of websites that would be very beneficial for you:

      These are excellent resources for the Individuals with Disabilities Education Act. The little booklet that the school provides is very minimal and confusing. I have spent many hours doing resesarch and reading cases involving special education issues. The law states clearly that the school is to use scientific evidence based research methods for teaching children, including those with disabilities. What this means is that if your child requires a specific teaching method according to their disability to allow them to learn or progress appropriately they have to provide it. Many school districts have been sued and lost due to this fact. It's part of the Free Appropriate Public Education (FAPE) that they have to provide by law. I don't know the situation with your daughter, so I couldn't comment on what those interventions should be. I've done extensive research on many in regards to my son's. If you need any assistance or would like to speak with me in regards to your situation I would be more than glad to help. You can send me a comment through this blog with your contact information, and I won't publish the comment. All comments are moderated before they are allowed to be published. You can always find me through a private message on facebook. I'm also the administrator for 'Say No To Teacher Bullies' facebook community. A private message can be sent through there as well. I just won't publish my email through a comment for everyone out there to see, but I would be glad to give it to you through another source and we could also speak by phone as well. Look forward to hearing from you.