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.

Tuesday, June 12, 2012

It's Not About Revenge....

Giving Andrew a voice and speaking out against bullying, verbal abuse, physical force, and harassment is not about revenge.  It's about making others aware of wrongdoings and standing up against these type of conducts against children, especially, special needs children.  If someone doesn't, nothing will be done.  Regardless of how big the school district may seem, I will make every attempt possible to make a difference. 

They cannot be allowed to continue practices that allow hiring incompetent teachers and allowing staff with a history of misconduct towards children to remain working in the district.  Does the school district have the attitude that because it's a special needs classroom that no one will find out?  I'm receiving many stories throughout the school district of misconduct involving special needs children and no one would take any action to correct the problem.  Are the adults that are entrusted with our children not required to follow the same anti-bullying policies that the children are expected to follow?  Shouldn't there be higher expectations from the adults?

I have experienced bullying from the school district during this process as well.  However, I will not allow them to use their power of position to intimidate me.  I will continue to push for change even if it means forcing them to change through legislation.  Some administrators in the district seem to think it's okay to bully parents.  I have experienced this at my older son's school along with other parents.  I keep hearing other stories throughout the district of bullying by administrators.  Some school administrators and the district seem to think that they are above and beyond the law.  It is time parents stand up against this type of practice and force them to abide by the laws.  As parents there are many rights in regards to your child's education.  The district would like you to feel as though you don't have any and don't want you to know what your rights really are or what the laws are.

"We have thoroughly investigated this unfortunate situation and have taken appropriate actions according to our policies."  This is the school district's response.  However, they have not told me of any actions that were ever taken and have stated that the investigation is complete.  I would like to know what "appropriate actions" they are speaking of!  There were no disciplinary actions taken against the teacher or the aide.  The teacher was allowed to complete her temporary contract through the remainder of the year and the aide was allowed to resign 3 1/2 weeks after the recording was presented.  Now they are free to go and repeat the same actions in another school district because there was no disciplinary action taken.  If nothing is done, there will be more children at risk.  The school district is more concerned with their reputation than the safety of children. 

After presenting the audio to the school administration, I have discovered disturbing information.  There are reports that the aide had been placed at 4 schools in less than 5 years due to the same type of misconduct towards special needs children.  Also, other staff in the school had made complaints to the school administrators in regards to the actions of the aide and the teacher and the administration took no action.  Even on the day of the recording when the aide returns from the office she states to the teacher, "She said for us to stop yelling at them."  On the day I took my complaints along with the recording, the administrators acted as if they were unaware of any such behaviors from these two staff members.  They even offered at that time to do a 'hide and listen', where the staff would not be aware of them listening to them.  If there were already complaints, why had this not been done earlier?  Therefore, the administrators failed to protect my child and the other children.  Is it also the attitude of some administrators that because it's a special needs classroom, no one will find out?  I guess they didn't think a parent would go to the extreme of using a recorder to discover what was really going on in the classroom.  Parents need to join forces and take any measure possible to bring about change in our schools for our children.  You, as a parent, do have rights in regards to your child's education.

There are too many good teachers to allow a few 'bad apples' in the system to remain when so many are losing their jobs to budget cuts. 

**As the moderator of this blog and Andrew's mother, I will no longer allow derogatory comments towards myself (Andrew's mother) or Andrew.  I will also not allow vulgar language.  This is out of respect for Andrew.  For me to allow such comments through would be disrespecting Andrew.  This blog is privately owned and is not a place for comments to exercise your right of 'free speech.'  I firmly believe in free speech and that's why I have this blog.  You may exercise that right in another location.  As the author of this blog, just like the author of a book, I have the right to say what is printed or not.**


Saturday, May 26, 2012

Update on Andrew

On Thursday, Andrew had to transported to the hospital by ambulance from the school bus.  He had what appears to be a gran mal seizure.  He has never had this type of seizure before.  He had only had partial complex seizures that were only occurring in his sleep.  This time he was fully awake before the seizure began.  He was under great care having such wonderful ladies taking care of him on the bus.  The principal called me as soon as he was contacted and he was in the hospital with Andrew when I arrived.  He took such great care of Andrew.  The teacher even called me later that evening to check on him.  The staff at his new school have been so wonderful to him.  They seem to be puzzled by the trouble he had at the last school because they keep bragging about how laid back and easy going he is.  They have continuously bragged about how much fun he is to be with.  It's sad that the other staff just preyed upon him and didn't get to enjoy his wonderful personality.  It's nice to have him at a place that truly care for and enjoy having him.  He has been sleeping a lot since this seizure, even today.  We will be visiting the neurologist soon to see what we need to do next.  They have increased one of his seizures meds and prescribed him another as well.  Please continue to remember him.  Thank you all for your support!

Friday, May 18, 2012

Sign the Petition in honor of Andrew and all with Special Needs!

I created a petition to bring about change in North Carolina.  According to North Carolina G.S.115c-325(e)(1) that lists reasons a teacher may be dismissed or suspended from his/her duties does not mandate that the district take these actions.  Also, NC G.S.115c-325f1 and G.S.115c-325f2 gives the superintendent authority to suspend staff immediately based on reasons listed in NC G.S. 115c-325(e)(1).  However, the reasons listed are not very specific and does not mandate action and therefore leaves it up to the discretionary of the superintendent.  I am pushing for change so that all school districts will be required by law to dismiss any staff from his/her duties when they have bullied a student in any way.  Change must be made to protect our children instead of protecting those that choose to abuse our children in the classroom.  Please join me in signing this petition in support of all children.

Thank you for your support in this fight for change to help protect our children.  This needs to be done in all states across the country.  This is becoming a growing problem, especially among our special needs children.  These children are vulnerable and need protection against those that choose to prey upon them.  Lets send a message that we will not tolerate these behaviors and allow school districts to cover them up!

Thursday, May 17, 2012

Andrew's Voice Speaks Out!

I have contemplated on releasing this information.  However, Union County Public Schools is giving me no choice with their lack of response and actions.  Andrew had been attending a Preschool for special needs children at Rock Rest Elementary School provided through the Union County Public School District.  We were noticing behaviors that were not characteristic for Andrew.  He did not want to come out of the house to get in the car when he was going to school.  You see, the school requires school logo uniforms to be worn and that's the only time Andrew wore these particular shirts which are red with the school logo.  He would also get visibly upset when we approached the school entrance.  I also had witnessed the aide taking Andrew by the wrist and almost literally dragging him because she was in a hurry while she was fussing at him to hurry up.  Andrew has low muscle tone and is not able to walk as fast as his peers, especially not an adult.  The teacher was also reporting to me that he wasn't responding to them and at times even refusing to walk.  This was not typical for Andrew.

 Due to these and other observations I decided to wire Andrew on April 19, 2012 with a digital recorder to find out exactly what's going on at school.  To my disbelief, things were far worse than I had imagined.  I was horrified at what was on the audio recording.  The teacher and aide verbally abused, harassed, bullied, and physically forced Andrew and caused him physical and emotional pain.  He was yelled at repeatedly to the point of him shaking out of fear to take his backpack off instead of providing him with any assistance.  Then you hear a struggle from the teacher with Andrew while she is continuing to fuss at him.  Also, due to his low muscle tone and seizure medications he can get fatigued easily.  He also has tightened hamstrings which is common in children with low muscle tone.  During carpet-time he had laid back on the floor, was not making a sound, and wasn't bothering anyone else.  The teacher begins to yell at him to sit up.  She proceeds to physically force him into a sitting position and forces his legs into the "crisscross applesauce position."  This position is uncomfortable and painful for him due to the tightened hamstrings.  When he was forced into this position he began to cry.  The aide yelled at him to stop crying and had another child to tell him to stop crying.  Then the teacher says, "There's no reason he can't sit there just like everyone else.  There's nothing enabling him from doing that."  Undoubtedly this teacher has very little knowledge about children with disabilities and yet she's teaching a special needs preschool class.  The teacher yells at a student for stating the wrong type of weather for this particular day and yells at another student for not pointing correctly as he's counting.  Some of the children, including Andrew, were mocked and laughed at for behaviors from their disability they had no control over.  There were no positive reinforcements, encouragement, or proper teaching techniques used during any of this audio.  Andrew was ignored throughout the day, except for the times he was yelled at and physically forced.  At one time the aide was literally screaming at him to "sit down" repeatedly.  At the end of the day the aide told Andrew, "Don't come tomorrow either, stay home with your nurse."  Then you hear the teacher laugh at the remark. There's much more to this audio to be released.  This audio is very disturbing.

Why? Why? Why?  Andrew did not make a sound all day except for when he cried out in pain due to the teacher's force.  He was never disruptive nor did he hurt anyone.  This was done by the teacher and aide out of complete malice.  They knew Andrew nor the other children could tell anyone.  Andrew is non-verbal and can't repeat anything that's told to him. 

This audio recording was presented to the school administrator on April 23, 2012.  As of today, the teacher and aide remain in the classroom with the children.  I immediately removed Andrew from the class.  The district will not give me any answers related to the matter.  When I have asked why they haven't been suspended pending the investigation, the district responds with, "This is a personnel issue and we can't release that information to you."  When I spoke with the Union County Public School district on Monday they gave me this same answer regardless of what question was asked.  There was a closed door school board meeting on May 9, 2012 outside the county concerning personnel issues.  Following that meeting, the teacher's position is posted on their website as a job opening at Rock Rest Elementary School for the new school year beginning in August.  However, it seems as the district has chosen to leave the staff in place the remainder of the school year to make this quietly go away.  We will not let this quietly go away and will give a voice that these children need.  We would like an apology from the teacher and aide for the way they chose to treat Andrew.  Also, we are looking for answers and for the district to take appropriate action.  We would also like to ask, "Is it Union County Public School's stand that verbal abuse, harassment, bullying, and physical force does not warrant removing staff from his/her duties immediately?"  It's been over 3 weeks with no answers and the teachers are still in the classroom.  We have full intentions of going as far as necessary to ensure districts are not allowed to cover up these type of behaviors from staff.  It is our hope that North Carolina joins New Jersey in legislation to pass a law that requires staff to be immediately removed from the classroom that violate any anti-bullying policy.

Please join me in making Andrew's, and the other children's, voice loud and clear.  These type of behaviors will not be tolerated in our schools.  No child should be treated this way.  But when the teachers prey on the most vulnerable they should be disciplined.  

Saturday, May 12, 2012

Andrew's Voice

I have become accustomed to being Andrew's voice for him.  Don't get me wrong, we talk to him all the time, allow him to respond in his own way, and make choices as he is able to the best way he can.  However, he doesn't have the ability to tell me why he's upset or anything that is happening to him.  As most of you know, he has only verbalized 4-5 words in approximations inconsistently.  So, I have to be his voice for him or he doesn't have one.  However, until a few weeks ago I never imagined what that would truly mean. Andrew had been trying to tell me something for awhile and I discovered what it is he had been telling me all along.  I felt like I had let Andrew down as a mother in one of the worst ways possible.  It's been several weeks and still can't believe that we are facing this challenge right now.  Even though I may have failed him by not recognizing what he was trying to tell me, I will not fail him now!  It is my intention to bring advocacy to a new level.  Andrew's voice is about to get very loud and clear.  This has to be done so everyone hears his voice along with the other children who don't have one.  Andrew and these children, just like neurotypical children, have thoughts and feelings and deserve to be heard!  It's time someone speaks out for all these precious children!  As things unfold over the next few days, weeks, and months I hope others will join me in giving these children even louder voices to be heard.

Friday, April 13, 2012

"Keep On, Keepin' On"

"Keep on, keepin' on," that's what we're doing at this point.  It's been a while since I have posted.  Things have been really busy around here.  Andrew was officially recently approved for services through the state for children with disabilities.  Now we have an aide coming in each day to help with him.  I'm very grateful for these services, however, it's a big adjustment having someone in your home daily that you don't know. 

Andrew will also be able to receive additional therapies outside the school system.  I have been wanting this for a long time and it's definitely long overdue.  He's been having an increase in seizures at night and has had to add another seizure medication to his regimen.  Around the same time, he also had an increase in his meltdowns.  Now we have had to reluctantly had to add another medication for that as well. 

We are in pursuit of a service dog for him.  We are hoping this will help with his behaviors and give him the sense of security he needs, allowing him to possibly come off of some of the medications he is taking.  Also, this will hopefully help provide a bridge for him socially as well.  Currently, other children do not approach him to play or engage with him. 

We recently went back to the Shriner's Orthopedic Hospital and he was able to quit wearing the AFO's (braces-ankle, foot orthotics) for now.  Yeah! One less thing to mess with!  They are just going to continue to monitor his growth in his hips and tibias for now. 

Pray that his seizures get under control!  The neurologist has also recommended intense ABA Therapy and if there's anyone that knows of any in the Charlotte, NC area, please let me know.  Our next step is to work on starting all of the therapies that he needs, pursuing a service dog, and possibly a safety bed as well.  If anyone has any recommendations in regards to any of these, please let me know.  Thank you all for your thoughts and prayers! 

Tuesday, February 21, 2012

I Never Imagined...

I never imagined that my life would be where it is now.  If someone had told me 6 years ago that I would be where I am now, I would have looked at them like they were crazy.  I view my situation as one of those we think of happening to others.  I would have never in a million years have expected to be on this journey.  I have learned more in the last six years than in the first 32 years of my life.  Each day is a remarkable learning experience with Andrew. 

Being a mother is a selfless job.  However, being a mother of a special needs child takes "selfless" to a whole new level.  If someone would have told me that my hobbies would consist of; researching medical and developmental struggles that my boys face to better understand them and provide them the help they need, researching and learning the special education laws, understanding my rights as a parent and my child's rights regarding their education, advocating for both my boys, educating myself on how an Individual Education Plan should and should not be written, spending many hours at IEP meetings and locating an advocate for these meetings when my child's education needs aren't being met, searching for community services available for disabled children, educating others about children with disabilities, promoting acceptance, and the most important hobby of all...caring for Andrew's complex needs. My life is not filled with my dreams or desires.  Neither is it filled with whether or not my boys are involved in the latest activities and sports of their typical peers.  Instead, it is filled with ways to provide for both my boys' needs, and my daughter's.

I still wish there was so much more that I could do to help my boys.  Many days, I feel as though I'm just not doing enough.  Others tell me that I'm such a strong person, when actually I feel very weak.  I never imagined.....   However, everything I do now has a meaningful purpose and I plan to use my life to somehow make a difference for others.

Saturday, January 28, 2012

"What You Did For The Least of These, You Did For ME"

Autism in God’s Economy: Parents of Children with Autism
“Disabled children are a blessing”.

It is something that we have all heard, even long before we were parents of disabled children. It is usually offered in a way that makes it seem like if you have a disabled child, you also have some indefinable, magical kind of ‘blessing’ where God waves his hand and, poof, you are blessed.

Once you become the parent of a disabled child, you begin to see what reality that ‘blessing’ brings, because in the beginning, in your early grief, you become grounded. All of the trivial distractions, petty rivalries, ego trips, vain ambitions and the nonsense of life suddenly become irrelevant. The junk in your life starts to fall away and it is replaced with importance placed upon things of true value.

With diagnosis comes a choice, to continue to self-serve, or to take a hard look at your life and begin making greater and greater sacrifices for the well being of your child. Because we love our children, very few of us would choose the former.

The blessing of having a child with autism can be found in Matthew 25. God eases you into falling in love with the Least of These, just like He is, so that when you receive diagnosis, the decision to serve them is automatic.

For our children’s welfare, parents in our community give up their careers, houses, retirement, health, relationships, free time, dreams, pride and a hundred other things that typical parents ‘get’ to hold on to. When we discuss the sacrifices that parents make, it is usually from the perspective that parents are losing out on the better life that should have been theirs.

Causing even more pain, some of these families will turn their lives upside down for children who may never ‘get better’ or live independent lives or even be able to acknowledge their parents at all. Some fathers will never be greeted with excitement by their child when they come home from work. Some mothers will never hear the words, “I love you, Mommy.”

However, Matthew 25:31-46 puts a whole new perspective on this phenomenon. What Jesus is telling his followers, just as He is about to leave them, is that whatever they sacrifice for the vulnerable in the world, they sacrifice for Him.

In the Bible, God asks believers to give just 10% of their income to Him. What do you think it means to God when a family who has lived all their lives in one place, tear up their roots and move across the country to a state that has better services for their disabled child?

Read Matthew 25:31-46
 again and pay particular attention to verses 35 and 36.

                For I was hungry, and you gave Me something to eat; I was thirsty
                and you gave Me something to drink;

We don’t just feed our children, many of us feed them gluten free, casein free, organic, hormone free, dye free, non-allergen, supplement enhanced diets that cost more money and take more effort than we would ever dream of spending on ourselves.

                I was a stranger, and you invited Me in;

Our children are strangers to us in so many ways, yet many of us spend a large amount of our time working vigorously to discover who they really are; to know them and to be known by them. The invitation is constantly being extended.

                …naked, and you clothed Me;

If the time and energy that we spend clothing and diapering our children were invested in the space program, we could have colonized Mars by now.

              I was sick, and you visited Me;

How many hours have you spent in doctor’s offices, conferences, training seminars, listening to lectures, reading books, and researching so that you could attend to your autistic child's health? How many nights have you stayed up trying to comfort your little one who could not sleep?

            I was in prison, and you came to Me.

How many times have you looked at your child who would not or could not respond to you and longed for him to be free enough to tell you what was going on inside his mind?  How many times have you held your little one and cried because you just missed him?

All the love, acts of service, sacrifices, and the other plates that you have let go of so that you could keep just this one spinning… He sees it all, and He says:

          “You did it to Me”

Remember that night that you were up cleaning your child in tears at 3 AM after eight consecutive months of broken sleep? That injury you sustained after trying to save your child many times from injuring himself that week? The times you ran like you’ve never ran before to save your child’s life despite your fatigue? That beloved thing that you gave up because you needed those resources for your child? He was right there, He saw it all, and as far as He is concerned, you did it all for Him.

When your child is diagnosed with autism, or with any disability, God puts you on a new path. It is rocky and dangerous and to journey on it is challenging. It humbles you and removes any pride that would have been yours had you not gotten the diagnosis. But Jesus said that He can only use broken people. People whose egos have melted away, people who have been brought to the end of themselves and had the love of the world’s economy squeezed out of them.  People who are dieing to themselves. It is only then that they can begin to see, and to love, God’s economy.

My children’s autism lays the ground work for God to be able to make me into a person who really knows Him and understands the world the way that He does.

The Corps has to strip away much of the man that showed up before they can build a Marine. As the parent of two children with autism, I am having the junk in my life stripped away by trying things based on the old paradigm, failing and having to go back and relearn the basics.

It has brought me back to a faith in God that I have not known in many years. A more child like faith that was less concerned with how I appeared and more concerned with just trying to learn from God and how to get it right. His ‘Right’, not the world’s right. It is a faith that is removing my independence and accomplishments and taking me back to the dependency and instability that I knew when I first met Jesus. As I am pushing forty, I am learning how little I really know, how weak I really am, and how much the smallest thing that I give to God really counts.

And God has used Andrew and Matthew to do it.

THAT is the blessing of the disabled child.

Sunday, January 1, 2012

Hopes and Dreams for 2012

Happy New Years!
We are very optimistic about the new year.  There are several things we hope and dream will take place for Andrew this year.
  1. That we are able to find the resources to get him a special needs bed so that he may be able to have a safe and secure environment for him to sleep.  This would allow him and myself to finally get some rest and get him back sleeping in his own bed.  It is unsafe for him to be up without supervision throughout the night.  This bed would allow him to remain in a secure environment when he wakes up without adding additional stimulation to cause him to not fall back asleep.  This bed is not just for us to be able to sleep but also to make sure that he is safe during the night.
  2. We are diligently trying to get him the intense therapy services that he needs.  All of the doctors and specialists have told us that these services are vital for his development during these young years.  I feel as though we have already lost so much time since he is already 4 years old.  However, it's not too late.  These services are not covered by our private insurance because they are habilitative services.  Our insurance does not have to provide services based on current laws passed by legislation mandating these services be covered, because they are a local government self-funded plan.  We are currently exploring other avenues to gain these services and are hopeful for the upcoming year.
  3. It would also help our family to have some respite care services.  Andrew requires total care just like a small baby would.  The problem is, he is 47lbs and it takes a toll on my back and shoulders caring for him.  He is completely incontinent and unable to dress himself at all.  He requires assistance getting into the vehicle, in and out of the bath tub, restraining to calm him from a tantrum or removing him from a situation, and etc.  I have pulled and strained muscles many times caring for Andrew.  It would be very helpful to have a break once in awhile from these duties and be able to go outside the home to take care of other necessary duties.  During the summer and school breaks these services would be most beneficial.  I currently try to schedule everything around school since he attends 3 days per week now. 
  4. We hope to be able to visit Johns Hopkins Medicine Institute of Genetic Medicine at the Rare Chromosomal Disorder Clinic in Baltimore, MD.  These are the experts in United States on chromosome disorders.  Our geneticist has recommended, Matthew-my other son, be tested as well because of his learning disabilities and behavior.  Then if any abnormality shows on him, have my daughter tested as well for her future children.  Our insurance has denied any of the genetics testing and we later found out that it was a fluke that Andrew's was covered.  This would be important to find out and what the odds would be for her to have any children with an abnormality as well.  These tests would let us know if this genetically came from one or both of us, or if Andrew's situation is isolated and occurred spontaneously during development in the womb.  So, there are two ways this abnormality could have happened.  It could be because I or my husband has a rearrangement (this usually doesn't have any physical or developmental effects on the person) which puts you at a greater risk of having a child with a chromosomal abnormality.  The other would be if Andrew's deletion is completely isolated and occurred spontaneously during in utero development.  This knowledge would be very helpful for the future of our family.  Also, this clinic would be able to possibly pinpoint the exact genes that are missing and the amount.  This information could tell us a lot of what effects this deletion is having on Andrew.  We could also gain knowledge in any possible effects on him as his body grows and develops.  This would be important for us to know so that we may catch something early enough to correct it without any devastating effects of catching something too late.  We might even be able to gain knowledge into his future development and what to expect.  This would allow us to plan and make any changes necessary for him to have the care that he would need.  During this visit they would also address any current issues and concerns.  Andrew would be referred to other specialists as needed and be given a treatment plan that would benefit him the most.  Andrew's current doctors are in uncharted territory with him and are having to use the 'wait and see what happens' and the 'let's try this to see if it works' approach.  This knowledge would also allow his current doctors to better care for him.  Visiting Johns Hopkins is our best hope in gaining more knowledge to help Andrew and our family.  Please pray that opportunities are made way to allow us to make this journey.
  5. Service Dog for Andrew.  I've been doing research on service dogs, and it seems that this could have a great benefit for Andrew.  This would provide him with security, more independence, and safety benefits. This dog would not only be a great companion for him, but would also help calm him during times of distress,  be able to detect seizures, help with his sleep issues, trained to stay with him at all times, and Andrew could be attached to the dog with a lead and not be able to wander away.  There are two problems to getting a service dog for Andrew.  One his father doesn't like the idea of having a large breed dog in the house.  However, the benefits for Andrew will just have to outweigh that.  The other is cost.  These dogs cost the same as a nice used car.  They are in the thousands.  I'm looking into resources on being able to get a dog for him in the future. 
There are other equipment and things we are looking into for Andrew as he is getting bigger.  Please pray for us as we continue on this journey with Andrew and that we are able to provide these needs for him and our family.  We are grateful for those that support us through prayer and encouragement.