THOUGHTS ON TRAGEDY

After a day of gut-wrenching news coverage, I went to bed only to be jerked awake several times with nightmares.  Most of them involved me not being able to find my boys in various situations.  I woke from them screaming, heart racing, and sweating, with a soul-searing panic that I never want to feel again.  I cannot ever imagine what intense agony and ruin these parents and families feel.  It’s unfathomable and so unbelievably wrong.

After a long consideration on whether or not I should keep what happened from my kids (ages 7 and 10), my little guy heard a snippet of news coverage on the car radio before I could switch the channel.  “Mom, what happened in Connecticut?”  Ugh.  How do you explain this to a precocious child who worries WAY too much anyway?  I ended up with an explanation that gave him simple facts, trying to soften the anxiety with the idea that this is something that is a freak occurrence and it will not happen to him.  Then came the million and one questions.  Why?  What was wrong with the boy?  How could he shoot kids?  How did he get in the school?  Will this happen at my school?  Will someone shoot me?

What a sad world that we live in when your child needs to ask these questions.

I limited any TV/news coverage but we still all shed tears and talked about it most of the night.

Now, we are left panicking about 3 large and looming concerns that have all of us “up in arms” so to speak:   Gun control, managing mental illness, and security for our schools.

To sum up my thoughts, and I am just one person, but anyway…

Guns:  I never want a weapon in my home that can kill dozens of people in the blink of an eye with the push of one finger.  I wish I had specific solutions on how to balance the right to protect oneself  with the right to have an environment that is safe from the danger of these types of weapons.  I wish with all of my heart that we could all work together to come to a reasonable conclusion to keep our children safe.  From what I am reading today, it seems unlikely, and it’s sad, very sad.

Managing mental illness:  I wish the media would stop trying to slap certain diagnoses of mental illness/neurological conditions on persons who commit horrific crimes. Of course these people are sick.  Nobody who is mentally healthy would do anything like that.  It is, however, hurtful and irresponsible to link a specific diagnosis, like schizophrenia, autism, Asperger’s, etc., to a criminal without knowing for a fact what that person was diagnosed with and without understanding the nature of these illnesses and reporting about that.  It does a great disservice to the many persons who suffer immensely with these conditions and it’s completely unfair to malign a whole group of individuals by linking their diagnosis to a sick person who has planned a mass murder.

I do not know what the shooter suffered from, but many outlets are stating that he was autistic or had Asperger’s.  The same thing happened with the CO murderer.  To throw out these terms and link horrific crimes to people who they label as “somewhere on the autism spectrum” and then not follow it up with the fact that people with autism have no more likelihood of committing a violent crime like this as you or I or anyone else.  I have also been hearing that “people with autism lack empathy” and this could not be further from the truth.  Say that to me when you see my child cry because he feels “devastated that the kids got hurt and had to go to Heaven.”  Most people on the spectrum have trouble expressing their feelings of empathy but this doesn’t mean that they don’t FEEL empathy.  The challenge comes with showing their feelings in a way that others understand.  And again, individuals with autism have no higher incidence of exhibiting planned violent behavior like this.  I am very worried for my child when our society ignorantly links his neurological condition with insane mass murder.

Obviously, this person didn’t get the proper care that he needed, and I have no instant solutions for this issue either, but something has to give when it comes to figuring out why so many young men are violently ill and not getting the proper treatment before they resort to something unimaginable.

Safety in schools:  The other day, I had to run to the middle school to pick up a paper.  It was like Fort Knox getting in there.  I had to ring a buzzer and explain my situation, stop at a kiosk and scan my license, type in personal information, and take a picture of myself for a printed name badge, and then I had to sign out with the machine on my way out.  I laughed so hard at this and joked that they might as well do a full-body scan.  Little did I know that today I would be grateful for that sign-in process and even wish for more intense processes when it comes to entering our children’s schools.  I sincerely hope that we will take safety for our schools much more seriously.  I am all for one entrance with metal detectors and an officer on duty at all times.  It sounds extreme but I will happily get frisked and not give a second thought to “my rights” when it comes to safety for my children.  We have to make this happen.  No child or parent should fear a school day.

My thoughts and my heart are with those in CT.  I am so, so sorry for their loss and pain.   Click below for ways to help.

http://www.huffingtonpost.com/2012/12/14/connecticut-elementary-school-shooting-how-to-help_n_2302760.html

Video: Temple Grandin, The World Needs All Kinds of Minds | Autism Support Network

 

Video: Temple Grandin, the world needs all kinds of minds | Autism Support Network.

NAC’s National Standards Report

Another interesting read on National Autism Center’s National Standards Project – read their description below and then click the link at the bottom to download the PDF.

The National Autism Center is pleased to announce the completion of the National Standards Project and the publication of the National Standards Report. Click here to see the results!

The National Standards Project answers one of the most pressing public health questions of our time — how do we effectively treat individuals with Autism Spectrum Disorders (ASD)?

The National Autism Center launched the project in 2005 with the support and guidance of an expert panel composed of nationally recognized scholars, researchers, and other leaders representing diverse fields of study. The culmination of this rigorous multi-year project is the National Standards Report, the most comprehensive analysis available to date about treatments for children and adolescents with ASD.

http://www.nationalautismcenter.org/affiliates/

SCERTS = Interesting!

Description from the SCERTS website (click link below).   Sounds really interesting!  Mama has to investigate more.

The SCERTS® Model is a research-based educational approach and multidisciplinary framework that directly addresses the core challenges faced by children and persons with ASD and related disabilities, and their families. SCERTS® focuses on building competence in Social Communication, Emotional Regulation and Transactional Support as the highest priorities that must be addressed in any program, and is applicable for individuals with a wide range of abilities and ages across home, school and community settings.

http://scerts.com/

Green Please

Do we need any more reasons to clean up our planet?

http://www.environmentalhealthnews.org/ehs/news/autism-and-environment

Don’t. Mess. With Mama.

We had an IEP meeting on Jan. 21. 

The Sped coordinator said something to Mama. 

OOOOhhh, NO-HO-HO-HO she di’int!!

Here’s Mama’s response to that in a letter to the superintendent!

 

Mrs. A. – Superintendent

ABC Public Schools

123 Street

Somethington, USA

 

 

Dear Mrs. A.,

 

My son, Ronan James, is a student at The ABC School who is currently receiving special education services due to his diagnosis of Autism Spectrum Disorder.  Recently, Ronan underwent a 3 year reassessment by various members of the school staff to determine his progress.  We met on January 21, 2009 to discuss the results and to define new goals for the rest of his school year.

 

In attendance: Mrs. L – Special Education

                          M and T – Occupational Therapy

                          O – Speech Therapy

                          D – School Psychologist

                          P – Kindergarten Inclusion Teacher

                          Mrs. X. – Sitting in for Mrs. T.

                          Mama

 

During the meeting, we discussed the testing that was performed on Ronan, what each individual result determined and what the goals for the rest of this school year should be.  The school staff did an incredible job of conducting the testing on Ronan – not an easy thing to do, due to his difficulties with engaging and his speech/comprehension delays.  They continue to do an amazing job teaching, coaching, nurturing and caring for my child.  I am grateful to each of them for the dedication, time and love that they have put into helping my child along this tough road that he has.

 

That being said, there are only 5 hours (15 min.) in a school day.  If you refer to the evaluation by Ronan’s developmental pediatrician, R., M.D., she outlines the necessary treatment for his ASD, which includes 25 hours of ABA, 2 hours per week of Occupational Therapy, 2 hours per week of Speech Therapy and Social Skills training.

 

During this school year, I learned through parent friends that their child was receiving therapy through the school’s “home program”.  I was not aware that any services outside of the school day were available, so I inquired about this during the meeting.

 

I stated to Mrs. X that this is something that I knew would benefit Ronan greatly.  As you may or may not know, a child with ASD is very prone to retreating into his/her “own world”, often engaging in self-stimulating activities for long periods of time, if left to their own devices.  It is best to engage the child as much as possible in an effort to sort of “retrain the brain” from needing to escape so much – in other words, we want Ronan to join us in our world as much as he can.  We also want Ronan’s comprehension of language and social skills to improve.  This is dependant upon how often he is drawn out of his self-stimulation. His functioning ability as an adult, his happiness and his future independence all depend on this and it’s especially important to implement these therapies at this early age – before the window of opportunity closes.

 

While I have spent a great many hours reading and researching how to best engage/teach Ronan, the truth is that I am not a trained and licensed special education therapist.  If there is one available to provide therapy to Ronan for the 25-plus hours that are necessary per week, then that is what’s best for him.  When I expressed this to Mrs. X, she proceeded to inform me that “the school doesn’t provide babysitting services!”

 

Excuse me.  Let me pause here. 

 

I am still in disbelief that she said these words to me.

 

I am also very confused and obviously extremely upset by this inference.  Not only is it insulting and degrading to a ridiculous degree to suggest to a mother (who is trying desperately to get the appropriate therapy for her child’s neurological disorder) that she is trying to somehow dupe the school system into giving her some free child-care, but it is vastly the farthest thing from the truth.

 

It didn’t end there.  When I left the meeting, shaking, angry and humiliated, I planned to call the Head of Sped when the updated IEP was given to me, in order to set the record straight about my requests – lest there be any doubt as to why I would want more therapy for my child.

 

Mrs. Head of Sped explained that Ronan had been approved for 5 hours of “parent training” per week.  I’ve not heard of “parent training” and when I stressed that other mothers were telling me that they have ABA services in their home, she said “it might look like discreet trials, but it’s really a service to train the parent how to solve problems with their child at home” and then she informed me that I would “have to be very involved in this”. 

 

I’m not sure what has happened with other cases in the Somethington Public School system in regard to special education students and their parents, but this treatment is a blatant affront.  I am simply trying to get the proper help for my child with autism.

Who are these people to imply (without knowing me or my child) that I am looking to shirk my parental responsibilities on the school’s dime?

Let me give you some background on our situation. 

 

When Ronan was born, I worked full-time as a nanny to two families.  Ronan’s father worked in retail.  As a blue-collar family, we were struggling financially already.  I had a choice to put Ronan in daycare full-time, so that I could work.  I chose to pare my jobs down to one family part-time, and I got to bring Ronan with me to work.  I walked dogs and pet-sat on the side, something I also took Ronan with me to do.  We were still struggling.  Ronan didn’t sleep and wanted to nurse constantly – some of the first signs of his autism.

 

When Ronan was 16 months, we had him assessed by a developmental pediatrician, who diagnosed him with PDD/NOS.  Thus began our challenge of obtaining healthcare and proper services in the world of autism therapy.  We only got approved for 1 hour of play therapy per week from Early Intervention, even though our doctor suggested 25 hours per week of services.  When the doctor heard of this, he wrote a very angry letter to EI demanding more help for Ronan.  We got more hours, thanks to him. 

 

I quit my job to stay home with Ronan full-time, so that we could be home for therapies, and also to take care of some allergies/digestive problems that Ronan was having.  This required a special diet – all foods cooked from scratch, very expensive special ordered items and vitamins/prescriptions.   These special foods and vitamins had to be consumed by myself as well, as I was still nursing Ronan – a very difficult diet for both of us to maintain.  It also included many trips to different doctors and specialists – most not covered by insurance.

 

We continued to struggle financially, but we didn’t care, because we just wanted our child to get what he needed.  I had been reading and researching 24 hours a day about therapies and education for autism and from what I gathered, California seemed to be the best place to live for proper services. My sister lived in CA, and she offered to let us stay with her for a year, so that we could save and pay our debt down.  We moved across the country for a year.  While in California, Ronan was approved through their Regional Center for full ABA, O.T., Speech and Social Skills Classes through an excellent agency by the name of C.A.R.D.  During this time, Ronan thrived, even losing his autism symptoms to the point where he was indistinguishable from his peers.

 

When the year was up, we decided to move back home.  I was pregnant with Ronan’s brother and we were homesick.  I continued to stay home with Ronan full-time.  After the baby was born, I still didn’t even want to risk getting a part-time evening job around Ronan’s Dad’s schedule.  I wanted to be around my son as much as possible, and Ronan had an incredibly difficult time with anyone else caring for him, so I never even left him with a sitter – ever.

 

When we had no other choice, I started a job working overnights, because that would minimize the time I would have to be away from Ronan.  Every day, I make Ronan’s lunch and bring it hot with me (he has food aversions, and he eats better when the food is just made) when I am dropping his brother off, and I bring it into his classroom and give him a kiss. 

 

Every day since I have found out that Ronan has autism, I read and research, order and bake special foods and vitamins, argue with insurance companies about not covering therapies or doctors assessments (necessary for school services, but about $3,000) that are critical for my child’s treatment for his pervasive developmental disorder. We engage and redirect him as much as possible, and we teach him the same simple things – like asking someone for help instead of screaming when frustrated or looking at someone when speaking – over and over every day, because it is so difficult for Ronan to remember these communication skills.  We do home and self-taught O.T., speech, and behavioral therapies with him – bouncing on therapy balls, water or sand sensory activities, make communication charts together with the proper use of pronouns or grammar, and countless other things. 

 

We go on nature walks even when it rains or snow, because Ronan needs movement on a grander scale than a neuro-typical peer.  He works hard.  And he fights every day to fit into our world, to learn how to relate to us and other children his age.  It’s unexplainably difficult to watch him struggle with expressing himself or understanding others. 

 

We gladly continue to do and provide everything Ronan needs every day, because we love our child and his brother immensely and to question my involvement with my child, to insinuate that I want to get a free break on the school’s money.

 Well, that’s an outrage to me.

 

I resent it, and I think you need to talk to your staff, and let them know under no circumstances does any mother deserve to be spoken to in that manner.  These are people who are in special education, and who work with young children and families.  They must have chosen that path because they at one time found it rewarding, one would think.  Maybe you can help them remember that my son and I, and any other child and parent that they are working for (we are talking about tax dollars that you and I and everyone else pay) are not just a quota. 

 

After I reject the current one, I will be smart enough to bring along a well-schooled legal advocate for my next IEP meeting.  Hopefully, a better outcome will be had. 

 

If you get the time, please also stop by www.ronanjames.etsy.com.  This is Ronan’s web-site, filled with his beautiful art, something else that we work on with him.  He donates to charity – Autism, of course.

 

 

Thank you for your time,

 

 

Mama – Very Involved Mother to Ronan James

**In addition, please note that my grievances are exclusive to the two incidences with Mrs. X and the Head of Sped.  The school staff who work directly with Ronan on a regular basis (listed above) have been nothing short of exceptional**

 And there you have it, Mrs. X. 

 Don’t. Mess.

Mama Love Obama so much, it’s not even funny!

http://www.centerforautism.com/09WinterNewsletter2.pdf

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