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Challenge: It's Back to School: Share Your Advice

To the parents of special needs kids headed back to school: 'Let's start being kind'

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Very soon some parents will start flipping through uniform catalogs and Target ads.

I’ll be flipping through my copy of last year’s IEP (Individualized Education Program) and making notes of all my summer brainstorming sessions. While some parents will be googling “sequins backpacks,” “how to make a child feel unique among uniforms” and “quick, organic ideas for packed lunches," I will be googling “how many days of the school year can my daughter miss before I am charged with truancy?”

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Yes. I am that mom.

The mom with a filing system coordinated by date with earliest date first for every doctor appointment, therapy session, ARD (Admission, Review and Dismissal) meeting, IEP, FBA (Functional Behavioral Assessment) and BIP (Behavior Intervention Plan). I am the mom that shows up with multicolored highlighters and pens and expects correct grammar in all of my daughter’s documentation.

I am the mom that has “fought” the broken system and lost.

Big time.

So here is my open letter to you, my friends, my team, my tribe who have special needs children and have no choice but the public school system. For those of you who know your child would be better off at home with you but can’t afford to quit your job to homeschool because speech, occupational, physical and behavioral therapy are savings and checking account illusionists and make everything disappear. For those of you who know that your child needs more – more attention, more compassion, more understanding, more sensory time, more alone time, more one-on-one instruction, more fun, more flexibility and more joy in their every day – but whether because of finances or location or lack of resources, public school is the only option.

By now you have probably already realized your kiddo’s teacher does not spend a cozy evening in July sitting on a fluffy chair with pretty ombré pillows reading your child’s IEP folder and receiving specialized training on how to teach and manage the behaviors of a student with your child’s diagnoses while sipping a latte in a fancy conference hall listening to “We are the World." In fact, they may not get that important folder for months after your child has started in their class.

Let’s stop pretending that the minimum “accommodations” are OK for our kids because we don’t have any other choice.

Let’s also stop complaining and be part of a solution.

Let’s start getting vulnerable. Let’s start pouring our heart out to each and every teacher that will make contact with our kids this year. Let’s write them letters about our story and our family’s journey. Let’s sit down together and share with them all of the things that makes our child unique and loved. The majority of our teachers and paraprofessionals are not being trained and it is not their fault.

Even though as parents we cannot provide all teachers and paraprofessionals the training they need for all different diagnoses and special needs, as a parent I sure can tell you everything that works for me at home with my daughter. I can give you the best training a person can get, not in autism but in Isla. We have to start building relationships with our children’s teachers and paraprofessionals instead of expecting the worst from them and building tension instead.

So here is my challenge for you.

Stop being nice to teachers.

I have written this before and I will remind you again – the definition of nice is pleasant, agreeable, and a synonym is delicate.

Been there done that.

Let’s start being KIND to teachers.

Kind is defined as generous, considerate, helpful, not causing harm or damage and a synonym is concern. Being nice is superficial – and to be blunt, most of the time it’s fake and forced.

Being kind is so much deeper and sincere and more importantly, it implies action.

So at the end of each day when the teacher gives me the daily notes of all my daughter’s “bad” behavior – which really is just a constant reminder of all the unique challenges she faces, I will not be nice and say, “Oh darn. OK we will talk with her. I am so sorry she gave you a hard time.” (*meanwhile throwing a mean, evil side-eye to my kiddo as she listens to us talk about her just so the teacher knows I will discipline her and I am not a push over*)

Nope. No more.

Instead I will be kind and say, “I am so sad she had a hard day and maybe caused others to have a rough time too. What can we do tomorrow to make it better? Can you please pull out her IEP folder so we can review the accommodations and maybe even the FBA, too, and see what we can tweak? Oh! The BIP! Let’s read the behavior intervention plan again but together and see what we can adjust. Is the behavorial interventionist going to visit? Can you call them in this week? Maybe they can offer some guidance with their expertise and skill with her most challenging behaviors.”

This approach is generous in honesty, sincere and makes everyone accountable by encouraging action.

I used to be the parent that got pissed. I just didn’t get it. I would argue with this girl child of mine and ask her why she behaved so badly and I would beg her to explain herself. We cried. We yelled. We grounded her. We took away her iPad and I am so very ashamed to admit we even took away family time. All in the name of “discipline” and “punishment” for a “bad” day at school. She has been in a full-day private therapy program, three different public schools and will switch again next year to a fourth. You see, last year we discovered that my girl has pathological demand avoidance (PDA) which is a really unique subset of autism and let me just say – the struggle is real my friends.

Over the course of the last year we have discovered it is not Isla that needs to explain herself when her behavior escalates – it’s us. What is our demeanor like? What do our facial expressions convey? How do our words make her feel? Why do we, teachers and parents, focus so much on what our child does "wrong" when in reality it is not "wrong" at all but instead a direct presentation of their diagnosis?

Enough is enough. I challenge you for every “bad” report you get this year do these three things:

1. Do not allow these reports to be read or discussed in front of your child. They may not be able to speak or communicate effectively but they hear and feel it all. The disappointment, the frustration, the anger builds and their self-esteem suffers. Sometimes this proves to be devastating for them. People, this is true for ALL children, not just special needs children.

2. For every “bad” behavior ask for a positive behavior report too. If the teacher lists three things that your child did that day that were “bad”, ask for three things that were positive and “good” to help encourage your child to mimic those things more often.

3. KINDLY request a behavior intervention plan. If you have a child in a self-contained unit, preschool program for children with disabilities (PPCD) unit, life skills class or even an inclusion student that has problematic behavior that impedes their learning, YOU NEED A BIP.

This year let’s focus on leaving school at school. Let’s stop the whole "tomorrow is a new day" thing and instead agree that each and every day has the potential to improve and we can start over ANYTIME within ANY DAY.

Do not allow a broken system to convince you that your child is broken.

I am writing this from absolute 100% humility and experience. I had to shift my attitude from anger and resentment to joy and acceptance.

So now for every “bad”report, I hug my baby girl extra tight and extra long that night. I tell her that I love her out loud and at the end add – no matter what. I LOVE YOU NO MATTER WHAT! I make sure my home is her safe retreat, not the next place in which the discipline will continue because of a “bad” day in a room and building where she sometimes feel confined, trapped and is not able to be herself without getting in trouble.

If you are reading this and have a child with special needs, I encourage you to find your kiddo's teacher one week before school starts and sit with them. Face to face. Share your family’s story and journey. Share your expectations for each other. Become allies. Beforehand.

So teachers, if you receive letters this year, please be patient with us. If we request to meet with you before the school year, please meet with us. And if we happen to write in our letter that standardized testing sucks and is a colossal waste of time for our particular child, don’t be offended. It is probably just a joke – kinda.

And if we shamelessly bribe you with baked goods or gift cards or wine to not send homework home with our kids because their learning disability makes it especially BRUTAL, please don’t report us. Consider the bribe a gift and maybe just don’t send homework on Mondays. It is "Dancing with the Stars" night. Priorities OK?

And yes I did also google the sequins backpack too. Oh give me a break, I need some way to carry around this mountain of paperwork that will keep me smiling.

Let’s just be kind to each other this school year.

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