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!      

Thursday, August 2, 2012

Educator or Bully

This is an article I found that every teacher should be required to read and be reminded of constantly.  With Andrew beginning a new school year this week and hearing the way some have chosen to speak to the students breaks my heart.  If you are a teacher please read.  If you are a parent please read and pass along to others.  If you are concerned for our children please pass along, especially to those that work with children.  The previous school Andrew was attending the teachers did everything this article says a bully does and did none of the things a teacher does.  His current school administrator will be receiving a copy of this article.  Every district should use this in training their staff on bullying and let them know it will not be tolerated.

Don't Bully Your Students
By: Linda Starr

A Connecticut school administrator, commenting on his districts decision to include teacher behavior in its anti-bullying policy, complained that it would be difficult to distinguish between bullying behavior and classroom management strategies. What about you? Can you tell the difference between behavior management and bullying?

Are you a bully? Two school districts in Connecticut think you could be. Avon and Hartford, Connecticut, may have been the first districts in the nation to include teacher behavior in their anti-bullying policies. One Hartford administrator, however, expressed doubt about that inclusion, claiming it would be hard to distinguish between bullying behavior and classroom management strategies. I beg to differ!

Classroom management is the practices and procedures that allow teachers to teach and students to learn.  Bullying, according to is the practice of being habitually cruel or overbearing, especially to smaller or weaker people.
In other words, those who can, manage their classrooms. Those who cant, manage their students. The former are educators; the latter are bullies. And, believe me, you can tell the difference!

Educators let students know they care.
Bullies let students know who's boss.

Educators teach self-control.
Bullies exert their own control.

Educators set ironclad expectations.
Bullies rule with whims of steel.

Educators diffuse minor disruptions with humor.
Bullies use sarcasm to turn disruptions into confrontations.

Educators privately counsel chronic discipline problems.
Bullies publicly humiliate chronic misbehavers.

Educators are judicious
Bullies are judgmental.

Educators, aware of the power they wield over their students, choose their words and actions carefully.
Bullies wield their power recklessly, frequently resorting to anger and/or intimidation.

Educators help all students feel successful.
Bullies punish students for being unsuccessful.

Educators address misbehavior.
Bullies attack the character of the misbehavers.

Educators see each student's uniqueness.
Bullies compare children to one another.

Educators treat all students with respect.
Bullies make it clear that not all students deserve respect.

Educators highlight good behavior.
Bullies make examples of poor behavior.

Educators are proactive; they create classroom environments that minimize student misbehavior.
Bullies are reactive; they blame students for the lack of order in their classrooms.

Educators educate.
Bullies humiliate.

Educators exude confidence in their ability to maintain order in their classrooms.
Bullies barely conceal their terror of losing control.

Are you a bully?

Wednesday, July 18, 2012

Many parents are having to take drastic steps to get proper services for their child with autism.

Here is an article about one mother's journey to obtain appropriate services for her child.  I have read many stories very similar to this.  It's heartbreaking that these children's future may very well depend on the state that they live in.

When it Comes to Autism, All States are Not Created Equal

Posted on February 3, 2011 by C.A. Curie

The Reason Why We Fight

Despite the recent proposals by various states to pass or introduce autism insurance reform, the reality is that most states in the country are still extremely deficient when it comes to providing autism-related funding and services. The lawmakers have realized the error of their ways and are now grandstanding before the media (and everybody else) gets a grip on reality about what has been going on.

One year ago, I left everything in Washington State, including my home and older children, to move to upstate New York to get the best possible services for my four-year-old son with autism. Washington is currently ranked 48th in resources for autism and New York is ranked fifth. The westernmost accommodating states are Wisconsin and Missouri. The rest are in the northeast, and include New York, Pennsylvania, and New Jersey.

Add in a tremendously low cost of living in upstate New York (because of the harsh winters), and you have one of the best places to live for autism services. Families have been migrating to these top states for help for the last ten years and thankfully, they are getting it.

In my opinion, Boone County, Pennsylvania, is the number one place to live, hands down. However, the million-dollar Pocono lifestyle and homes are way out of most families’ budgets. That’s why I came to Onondaga County, New York, where my son is receiving up to a half-million dollars in therapy and services each year.

Australia and the United Kingdom are way ahead of the US in providing proper treatment and therapy to all diagnosed persons with autism. Catching up will be difficult. At the current rate, our Social Security system (and other government programs) will be bankrupt within seven-to-ten years. The estimates of the well drying up in 2037 are incorrect, and lawmakers know it.

Don’t get too exciting when reading the latest headlines about autism "reform" and lofty promises by lawmakers. These rarely trickle down into hands of a child’s immediate needs. In fact, due to the lack of properly trained professionals, it will take years to see any meaningful difference.

I spent fourteen months advocating and battling for services in Washington State. This is a no-tax state, which was part of the problem. After tremendous paperwork, getting advocates involved, and nasty battles, I ended up with 3 days a week, 2 ½ hour early intervention sessions with unprepared teachers. As a result, we had minimal results and non-productive speech. The teacher and speech therapist meant well but lacked the training and skills needed to be effective. I appreciated their efforts, but the reality was that my son was not thriving.

The school district did not want to give my child summer school or an ESY (Extended School Year). This was critical because it’s been proven that without three or more days of a school program and therapy, a child with autism will show regression. As a result, an effective autism school and/or early intervention program will be year-round and not just occur during the regular school year. Study the IDEA (Individuals with Disabilities Education Act) laws and know them before your first IEP (Individualized Education Program) meeting, so you are well-informed about these issues.

What Washington gave me in place of not having a summer program, was a self proclaimed "Autism Therapist." After four sessions into her therapy and personally witnessing her slamming my child into his chair, whiplashing another student, and having zero progress with another, I pulled my child out. She grabbed my arm forcefully as I was leaving with my family, seething with anger and tried to intimidate me saying, “your child is a hard one.” A call to CPS should have been made, but I vowed to focus solely on my son’s healing and not get bogged down in lawsuits or "he-said, she-said" accusations.

Without a doubt, the best programs in Washington pale in comparison to the worst programs in New York. If that were not the case, I wouldn’t be foreclosing on a half-million dollar horse farm, recovering from a divorce or given away most of my things.

My studies and conversations with other parents and personal experiences have led me to the conclusion that the state you are in will define your child’s future.

As stated, lawmakers are continuing to hash things out, but these changes will not make an immediate difference when it comes to hands-on therapy. So if your state does happen to pass laws handing out cash or institute legislative mandates, there is the secondary issue of finding the properly trained persons to address the therapies and services that are being funded.

Don’t believe people just because they are in an administrative or authoritative positions. They are not all bad, but the majority lack the proper knowledge and training. There’s no excuse since the research has been completed and proven.

Your child doesn’t have a lot of time. Moving to a state where resources are available five days a week through a school system should be strongly considered. You need to have access to an agency like Enable, who will bring ABA into your home well after the early intervention period is over.

Forty-percent of non-verbal autistic children will never speak. My son was almost one of them. This high percentage is directly linked to the lack of trained persons and no access to accommodating services in the majority of our states..

I cannot explain the joy I felt when two months of New York-style therapy brought out my son’s full speech at three years old. Now, thanks to the great state of New York and the SPICE program, I can finally hear him tell me and write his likes, dislikes, feeling, and fears.

Most importantly, he hugs me, kisses me and says, “I love you mommy, I really love you, I love you forever and ever!”

Washington State left my son and I with little hope when I was told, “he’s a hard one." In only 9 short months, the services provided by New York caused me to receive daily progress reports and happy handwritten pictures expressing my son’s love for me.

It’s treasures like these that make moving 3,000 miles away, along with countless other sacrifices, all worth it in the end.