I originally was going to write a book titled, “From Both Sides of the Table”. It was to be a chronicle of my experiences with the special education process as both a parent and a school psychologist.

In truth – the task of writing a book just seemed too overwhelming. Plus, by the time I finished the book, the information may have become outdated. That happens when you are writing about education, especially the “special” side of this arena. So, instead of writing From Both Sides of the Table as a single book, I am going to write it as a series of blogs. Not as a weekly series – but dolled out over the course of a few months or perhaps a year. I want to start by introducing my story, actually our story. So, this first blog may seem familiar to some as it contains reprinted materials from previous entries. So without further adieu the first entry starts now…

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Hello and welcome.   First and foremost, this series of articles are written from my heart to all who are seeking support or guidance as they enter and learn about the world of special education.  I know a lot about this world as both a parent and a seasoned psychologist who works in schools (or virtually with school districts and charter programs).  In essence, I have put my “tush” in chairs on both sides of the special education table.  Depending on what role I am in at the time – I have learned, listened, cried, and offered my best expertise. I have ridden the emotional roller coaster known only to those who have parented a child with special needs. 

It is to those parents and hard-working professionals I dedicate this series

And so it begins…

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Books. Lectures. Listening.

In 1984 I completed all the necessary requirements to receive my certification as a School Psychologist.  I was one of the youngest graduate students in my class, if not the youngest. So, to say that I had limited “life and family” experience was an understatement.  But, I studied, watched a lot of interactions between parents – teachers – and children, and, became the ultimate observer of child development.  After a few years, equipped with a hefty dose of “book knowledge” and my heavy testing kits, I ventured to my first permanent paying position at the Delaware School for the Deaf (aka “Sterck”).  A dream position that combined my School Psychology expertise with my sign language skills.   It wasn’t until years later that I truly valued what I learned between the covers of all those books and in the various university lecture halls. But my expertise was most garnered sitting around a table listening to parents and other professionals, as well as watching children when they played, learned, and even struggled. But, my BIGGEST lesson arrived a bit after I started my career. It started in all place – “Holland”.

   Our Trip To Holland?

(Previously published on this blog – but with new information below)

The poem written by Emily Perl Kingsley was cut out and pasted on the refrigerator from February of 1992 until we moved to a new home in 1995. It was titled, “ Welcome to Holland”. In essence, it was a snapshot of what it is like to be unprepared when you give birth to a child who has challenges, such as medical or cognitive disabilities.

There is one section of the poem that I read over and over again, “After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.”

My husband and I wanted to go to “Italy” but ended up in “Holland” on February 7, 1992. I should have known that our trip to second-time parenthood would be bumpy as we were told that our second born was to be another girl. “Two girls, so nice”, my OB-GYN told me. Guess what? –  We had the first boy born in 28 years in my family as he arrived over a month early via an emergency c-section!  

“We need the scan for the Sattler baby” I heard being yelled at by the attending physician across the labor and delivery recovery suite.  “What? ” I yell back – “I need to talk to a doctor – NOW.  That baby is MINE! ” So, the nurses came rushing over to remind me that I just had surgery and to lay back down.  “Nothing serious” they try to assure me – just that our little guy was not quite breathing as expected and a “few other things”…

What?

Where is my husband?  Did I hear that right?  Our hour-old baby is sick because he is not breathing right.  AND his sugar too low?  Plus his heartbeat too high?  I could already feel the plane veer off course.

Days later we were allowed to go home only to notice that our little “fella” was turning the color of a Sunkist orange. Not good. Not good at all. Rushed back to the hospital to be told it was simple “jaundice”. Nope, nothing in this child’s life would be simple, I found out. Days go on and before the first actual tulip bloomed that year we were in intensive care with our young guy. Jaundice ended up being a “liver problem” – not yet determined, but possibly very serious and could lead to severe developmental delays.

Let’s just say when you hear this kind of news you take a moment for a big pause.

“Mental Retardation” were words I heard the medical staff use. WOW. This was a term used back when our little fella was born and before.  Now there are “softer” words, more palatable.  Such as developmental disabilities or cognitively delayed.  Doesn’t really matter. The result will be the same if our little fella does indeed have any or all of the disorders that the doctor is preparing us for.  The list seems endless. My head is ready to explode. But, I know I have to stay calm and rational. Plus, we have another child who needs her parents to be present and steady. But, you can’t always be the “present and steady parent”… so we were about to find out.

We blinked, it seemed, and we really found ourselves flying the hell away from Italy and nearly on a crash course… Our little guy was diagnosed with Respiratory Syncytial Virus/ RSV. This nearly claimed his life. 

What did that mean? Well, he was really sick – with a serious flu-type illness compounded with reflux that choked him every third breath. Our nightmare continued. You know you have a very sick baby when you can’t find room to stand in the isolated PICU suite because of the number of doctors, nurses, and respiratory therapists working with your child to keep him alive. You also know your baby is very ill when the nurses come and ask you questions such as, “Is there anyone we can call for you?”  

Does God have a hotline, I wonder?  But, I respond – “No thank you.”

For any new parent who has a baby in distress, you know the worst part of this scenario is waiting. You wait to see if the tests are positive for illnesses that are unimaginable. You wait to see if the insurance will cover the rare and complicated blood work, machines that are helping your child stay alive, or special therapy sessions ordered. You wait to see if you will ever have a “normal” life again for yourself, your family, your work, etc. Will your child walk, talk, eat normally, have friends, etc.? You truly begin to HATE Holland with every fiber of your being.

Then little by little, the waiting ends. 

Test results come back. Therapies begin. Hospitalization stays end and you go home.

But, for many of us, this is when we start a new journey into the realm of Special Education. 

Here is the most ironic part of this story and the reason I am writing it for this blog. I am a special educator. I am a full fledge, certified School Psychologist that is trained with helping parents and children with special needs. All my training flies out the friggin’ window as my mind is trying to process the months of evaluations, reports, and recommendations from specialists. 

Ironic indeed. I have now changed teams! 

Instead of being the intervention specialist I now am the one calling our local school district asking for help from the Early Intervention Team! And I am so grateful when they appear at my door. But, I still have problems with paperwork and understanding all the information. How can this be? I do this job every day and I am still wading through it because my head is so full of grief and confusion. The team helps me. Every day gets a little better. Clarity arrives with every meeting or visit from a team member. 

Now fast- forward, our son improves with therapy as he starts to talk, walk (actually run) and become quite sociable. He has more hospital visits but he is deemed fairly healthy. His liver has a benign disorder and we are told he shouldn’t go without food or enter the military. We can live with those two stipulations to have a benign liver disorder vs. the alternatives. But, no worries – he will be ok. He will just need a little “special education” for his speech and language development, perhaps. And maybe when he is older he may need additional support (That saga we will save for future articles).

I give thanks that he will survive. And, I am ready and willing to take my seat comfortably on the parent’s side of the table. We will be OK.

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Here is your “Introduction Guide” to Special Education – Starting with a few questions and answers.

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In closing, this is just the first of many, many blog entries regarding special education and so much of what it entails. You will find out that special education is a very broad world and there are many, many facets. You also will discover that “our little fella” grows up to be an honor student and successful in his chosen career that involves helping others.

Have a question? Want to share your experience? Respectful comments are always welcome.

Thank you for reading!

~Louise