Advocating with Grace

A Busy Year – Part 1

Life has been so crazy since the last time I updated this blog, and so many things have happened.

We had an ARD meeting with the Powers That Be in our local ISD regarding Storm’s expulsion from St. V’s and the need for more educational support from the public school district, so in January he began Pre-K at WFAA, a “School of Choice” within our district.  One of the benefits of this school is PE every day for K-5, and the emphasis on fine arts gives him a chance to express his creativity.

Storm’s honeymoon period was very short at this new school.  He got to ride the bus (an exciting daily event), and started his day out in the PPCD classroom for breakfast (our ISD provides free breakfast in the classroom for the entire elementary population).  He would then go to a regular Pre-K classroom (24 kids, one teacher, one aide) that was made up of mostly Spanish-speaking children, and stay there for most of the morning. Then he would come back to his PPCD room for snack and dismissal and ride the bus home.

Toward the end of the year he made significant enough progress with his behavior that the ARD committee determined that a specialized autism program or SPED environment was unnecessary and he could be mostly mainstreamed into Kindergarten.

Glossary

I figured it might be useful to provide a glossary of sorts for the TLAs and FLAs we use on a regular basis in the autism world as well as some of the people and places whose names have been redacted for privacy purposes.

ABA:  Applied Behavior Analysis – is the application of the principles of learning and motivation to encourage positive social behavior.  In the Autism world, this is basically a type of therapy that is usually conducted one-on-one that is designed to help a child with social and behavioral difficulties learn to self-correct and improve their behavior and social skills.

ARD: Assessment, Review, and Dismissal – this committee determines a student’s need for special education services in a public school district.  They agree on and put in place an IEP and BIP.  The ARD committee is made up of diagnostic personnel, campus administrators, the student’s primary teacher as well as other teachers with regular contact, any personnel providing specialized services, the student’s parents, and in some cases any outside therapist or advocate that the parent deems necessary.

ASD: Autism Spectrum Disorder – A huge variety of symptoms fall under this umbrella term.  Aspergers is on the far “high functioning” side, while classic autism is on the other end with about a gazillion levels in between.

BIP: Behavioral Intervention Plan – A plan agreed to and put in place by the ARD committee to outline specific steps that must be taken to help prevent and diminish unwanted behavioral outbursts by the student.  A common starting place in Storm’s BIP is redirection to a less frustrating activity.

ESNT: Easter Seals North Texas – A wonderful organization that provides Autism services in North Texas.

FLA: Four Letter Acronym

IEP: Individualized Education Plan – A plan agreed to and implemented by the ARD committee that outlines any accommodations that are made for the student.  A teacher is prohibited from making individual accomodations (this could be perceived as unfair by other students/parents/etc) without an IEP in place.  An example from Storm’s IEP is the option for him to receive repeated instructions in different variations until he understands what is required of him.

ISD: Independent School District – The Great State of Texas has independent school districts.  While the general education requirements are set forth by the state, each district has mostly autonomous control over how the curriculum is taught.  Districts are not controlled by any municipality, but rather a school board.  The classification of independent also has significance regarding tax purposes, but for the needs of this blog that is not terribly important. ISDs are generally referred to with the city initial to denote which one, such as Dallas ISD is “DISD”, Fort Worth is “FWISD” and so on.  I am not comfortable naming our ISD in such a manner as doing so will be easily recognizable and I’m trying to keep my kids’ personal lives as private as possible while trying to help other parents.

Mr. P: This is the vice-principal at WFAA.  He’s been an amazing support for Storm.

Mrs. S: This is the principal at WFAA.

Mrs. T: This is Storm’s kindergarten teacher.  She is an amazing woman with years of experience.  She has really helped Storm to blossom.

Mrs. W: This is Storm’s Pre-K teacher.

PPCD: Preschool Program for Children with Disabilities

SPED: Special Education

St. V’s: The private Episcopal school Storm attended for 1.5 years.

TLA: Three Letter Acronym

WFAA: This is Storm’s current school.  Basically, a public elementary school with more of an emphasis on the fine arts than a traditional elementary.

The Start of a New Journey

Alas, the day I have been dreading has arrived.  The day when a school official at St. V’s explained to us that they could no longer meet Storm’s unique special needs and we would need to have him in OT and school elsewhere.  In other words, my sweet little boy has been expelled.  In the future, we can always re-apply if his behavior has improved…years down the road.  Of course, we still have the option of sending Sunshine there when she gets older.

St. V’s was not just a school.  It was a unique educational experience, and a place where this socially awkward mother managed to tentatively make some friends and form good social relationships.  I hold nothing but the highest regard for the educators and staff of St. V’s.  They are some of the most respectable, kind, and caring individuals I have met.  They truly love the children at the school, and our meeting today was full of tears as they gently broke the news.

Now we begin our new journey.  We have begun a process of searching for the right educational environment for Storm, and must be the strongest advocates we can be.  He really deserves it.

Pseudonyms

(source: Wikipedia Commons)

I have given both of my children pseudonyms to protect their privacy on this blog.  If you know me, or know how to navigate Blogger, you likely can easily find out their real names.  However, I do ask that you respect their privacy and refrain from mentioning them by name in comments, or attempting to defame them in any way.

Storm was chosen because my son is complex like a spring thunderstorm.  Here in Texas, a storm can appear almost instantly with very little forewarning.  Every storm is different, and you never know what to expect.  Storms can be dangerous with lightning, hail, and tornadoes.  Storms can be intense with noisy thunder and pouring rain that fills the streets with water.  Storms can also be greatly beneficial as they bring rain to help make plants grow.  Nothing would be able to grow without rain, and as unnerving as a storm can be, there is something profoundly and mysteriously beautiful about them.

Sunshine was chosen because my daughter is a delightful burst of warmth.  The sun can be shrouded by storm clouds, but you know it is still there.  Sunshine helps to re-energize people, and nothing could grow without it.  The sun is warm and welcoming, bright and happy.

Both are needed to survive, and our family could not grow together without them.

My favorite weather phenomenon, however, is when the rain is pouring down but the sun is still shining through, and I can see the prisms of light in the raindrops.

(Source: Flickr)

This blog is my platform to speak about Autism Spectrum Disorders, Asperger’s Syndrome, and how our family copes with our special son.

Tell us about your family:
My husband (henceforth to be referred to as The Captain) and I have been married for 8 years, and it is proving to be an interesting ride.  We have two awesome kids (so far).

Storm* is our oldest, born in 2008.  He was diagnosed in 2012 with high functioning Autism Spectrum Disorder (PDD-NOS), possible Asperger’s Syndrome, with ADHD type subsumed.  He is a sweet boy, with a quirky sense of humor, and he loves to have fun although he seems so serious most of the time.  He is also highly intelligent–we often joke he is too smart for his age.

Sunshine* is our little one, born in 2011.  She has a bubbly personality and is always ready to be held and hugged.  She is much more socially outgoing, and babbles to anyone who is willing to listen.

We also have two lovable dogs.  Menschi is a 4-year-old Corgi mutt, and is very laid back.  She loves everyone and would lick them to death if she got the chance.  Menschi is Japanese for “Emergency Food Supply”.  Our other fur-ball is a one year old Siberian Husky puppy named Sasha.  Sasha is about as spastic as a large puppy could be.  She is full of energy and must be watched closely around the kids lest she knock them over in her excitement. Menschi is my dog, Sasha belongs to The Captain, but I end up taking care of them both.

    

*My children’s names have been changed to protect their privacy.  More on why I chose these pseudonyms here.

Your kid is just being spoiled, you’re a lazy parent:
This statement couldn’t be farther from the truth.  I don’t by any means consider myself a perfect parent, but I do discipline my children as they need it.  We have rules in our family, and everyone is expected to follow them.  Storm’s autism is never allowed as an excuse for poor behavior.  The Captain and I try our best to provide a firm and loving home for our family within a Christian context.

Christian?  Are you one of those wackos?
The Captain and I are conservative Anglo-Catholics.  We are members of The Episcopal Diocese of Fort Worth, and are active members of our home parish where we serve in various ministries and I teach Sunday School for the preschool children.
We attempt to live our lives following the model of Christ, but acknowledge that we are all sinners.  We respect that others may not follow our faith and we prefer to evangelize by the example we set in our own lives through our words and actions toward others.

So what is this Autism thing?
As best as I understand it, Autism is a complex neurological disorder.  I actually don’t like the term disorder, because it implies that there is something “wrong”.  I believe God made my son exactly the way He intended, and possibly for a purpose only He knows.  I do know that Storm is not neurotypical.  He has odd behaviors and quirks that are unique to him, and these all add up to make up a very interesting individual.