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“Five Ways to Parent an Extreme Child Through Elementary School”

It takes a village, and lots of other things, for your child to survive and thrive in public school.

Parenting is messy and hard. Teaching is messy and hard. Both are exhausting beyond words. So this is a list from a teacher who is also the parent of a child with invisible disabilities that will help to educate educators and prepare parents for what parenting our children through public education might look like.

5. Build your village. Words don’t do this step justice. This is the most important thing you can do to arm yourself for the battle of public schooling children with invisible disabilities.

As parents of children with behavior disorders, we face judgment daily, but there is no glare like the look of an educator who makes you feel that he or she disapproves of your child or your ability to parent them.

Disclaimer: We need to admit that sometimes we take things like this personally when they weren’t intended in that way. I am both an educator and a mother of a child with behavioral disabilities, so I feel compelled to speak for both sides.

I have received daily notes, letters from daycare, calls to my work, referrals from the bus driver, and seen weeks of sad faces or heated notes in my son’s planner. They all have one thing in common: When I read them, it made me angry, hurt my feelings, or made me feel defeated, but it always made me defensive of my son.

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I would think: “They just don’t understand.” “They can’t expect him to behave like all of the other kids!” “They are just nit-picking him.”

Regardless of how I might feel, until we can afford for one of us to stay home and to homeschool our son, or to send him to a private school (which will not be in the foreseeable future), we must be able to remain calm and keep the peace with his educators.

To do this, we must build our village. We must find people with whom we can connect with and reach out to—someone we can text at 7 a.m. when my son just threw his shoe, at 3 p.m. because he was kicked off the bus again, or at 10 p.m. when he screams in a voice straight from the nether realms, “You are the stupidest mommy I have ever known!” You need someone who hears you, someone who gets you, someone who lives your reality.

So when you get the fourth note from your child’s teacher saying that Sally couldn’t keep her hands to herself and she had to move her clothespin down for talking out of turn or moving during carpet time, you can call your fellow villagers and scream, “This is insane! Do they really expect her to be able to sit through a 30-minute story time!? Who can even do that!?”

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4. Prepare for war. Parenting is an ugly job. It is food spills and dirty diapers and weird smells in your car. It is messy hair and a questionable number of days in a row without showering. It is carpooling and sports practices, homework and packing lunches. All of that is exhausting in a way that people who aren’t parents will never truly understand.

When you add to that the endless medication adjustments, calls to specialists, visits to new doctors in hopes for different results, IEP and case study meetings with schools, and scouring the shelves of multiple stores to find old packaging because my sensory processing disorder child refuses to eat the blueberry cereal bars he has eaten daily for two years because he swears that the new packaging makes it taste different—it can seem completely impossible.

Battling a teacher, a bus driver, a PTA mom, a guidance counselor, a school system will not come easy. There will be haters. There always are.

There will be parents who don’t know our children and who are unforgiving when our son hits their son on the playground because he was reacting to them being in their face and he couldn’t articulate the way it made him feel. They couldn’t process it fast enough to tell the teacher. They acted on their feelings out of impulse, and we weren’t there to intervene.

3. Understand that you won’t always be…understood. This one is painful. Truly. I can sit here and type these words knowing that this afternoon something will happen with my son that will cause me to go into a panic, get defensive, or lose control and lash out in anger at him. No one will fully understand what that feels like and, for that, I should be grateful.

Not every parent is cut out for our job. The children with whom we have been entrusted to raise—the ones who make us crazy, break our hearts, bruise our skin, and dent our walls—these are not children meant for just any run- of-the-mill parent.

Parenting is the hardest job you will ever have, but these kids….are, well, a special treat. Some moments they are the sweetest angels and you are reminded why you would do anything for them. But all that can change in a second. So we shouldn’t expect others to understand our journey, because it isn’t theirs to take.

The teachers try to maintain growing class sizes, battle issues each child brings in from home, and teach kids who are all on different levels of learning—usually all while outperforming their previous test scores and keeping a safe environment and impressing the other teachers with their Pinterest-perfect room décor. I know. It is brutal.

When we are met with the disapproving glance of other parents, the tired teacher, the principal whose mind is still in the meeting she just attended, or the guidance counselor who doesn’t really have time to counsel because he has to balance testing schedules with class schedules and credits and parent complaints, maybe it is us who should try to be understanding.

Please know that this comes from a mother who sat, unable to speak through sobs, while she showed the behavior chart to guidance counselors, teachers, and a principal where red pen had recorded four pages of physical outbursts from my son…over only two weeks. That did not include angry outbursts or refusal to comply on the basis of, “Oh, well, it’s a Tuesday.” This was only what he had done when his behavior escalated and became physical. I was crying. My hand holding the papers shook as the educators on the other side of the table told me that my son did not qualify for an IEP, a 504, or special accommodations. I felt utterly hopeless and as if they just did not understand.

You’re right. They don’t understand. And that is OK. But we must move on to step number two.

2. Keep fighting. For us, this battle will never end. So now that you’ve built your village and prepared for battle, get the armor out because you’re going to need it.

When people tell you that they cannot accommodate your daughter, you find another way.

When the teacher says she can’t give different work to your child, only extra work if they need to be challenged, you ask someone else.

When the school officials say they don’t offer a gifted program until third grade and your son is in kindergarten, you continue to go up the ladder until someone will hear you.

When the bus driver writes your child up again for not sitting still when his bus ride is an hour long and he can’t have his medicine until 3 o’clock, you calmly try to explain your situation. If they don’t listen, you go to the principal, the transportation manager, and whoever else will listen.

When I tell you to prepare for war, I certainly hope you won’t need the armor, but I’ve used mine many times and my child is only five.

Use your village so you don’t bust up in the school like an episode of Jerry Springer. Let your villagers calm you down, let you vent, and encourage you before you take the crazy train to the school board office. You laugh now, but the day will come!

Don’t stop fighting. Many times, especially while our children are very young, we are their only voice. Keep fighting for them. Our children need to know that we are their biggest advocates.

1. Breathe.You will cry in meetings. It is inevitable. At least it is for me, because that is what I do when I am overwhelmed and angry and can’t just flip out like I want to do.

In order for me to survive, I need to understand that, while it may feel like they just have no clue about my child or they are personally attacking my ability to parent him, they are (in most cases) sincerely trying to do the best they can while following school policies and procedures.

As a teacher, I can tell you that what is best for the individual child doesn’t always follow the handbook. What this means for me as the parent of a child with multiple behavioral disabilities, a sensory disability, and who is also academically gifted, is that I have to breathe a lot. Sometimes it is because I don’t feel truly heard by Briggs’s school, but usually it is because my husband and I are forced to make a decision without knowing for certain if it is the right choice for him.

We were told to consider skipping him a grade or even two. I laughed. I mean, this is the kindergartner who just de-pants himself at a birthday party for comfort and you think he can handle his life with eight-year-olds!? No ma’am. But, academically, we do fight an uphill battle, because when he is bored he acts out, so he must remain challenged.

So, breathe. It won’t always make sense, but if we act out like our children do, it won’t solve anything. You know, like we tell them when they are on the brink of a complete loss of insanity?

1A. Don’t be afraid to try what no one else will. What works for other children is unlikely to work for our kids. So, while Legos are a great mind activity for our son, they are also the source of many a meltdown because a piece that is nearly invisible to the human eye just won’t fit quite how he wants it. So the bucket goes flying and a barrage of tiny blocks that seem to be made of shrapnel rain down from the ceiling.

Some kids can read independently and sit quietly at their desks; others may be able to play educational games on a tablet or keep their hands in their laps while sitting criss-cross applesauce during circle time. Those children are not my son.

Don’t be afraid to try what seems different or weird. Most days, my kid eats dinner standing up. My son sleeps a lot of nights on the hardwood floor, he rolls his shorts up to lengths only known by men on the golf course over 70. And when he needs to calm himself, he punches a punching bag and hits his head on the couch cushions. I no longer question his process. We roll with what works at the time.

This road is long.  Public education for children with invisible disabilities may be ugly, and it may get messy, but I can assure you that if you build your village, you ready yourself for battle, you understand that you might not always be understood, you never stop fighting, and you remind yourself to breathe, that we will all get through this and our children will be the stronger for our efforts.

[“10 Things People Say to You When You’re Raising an Extreme Child”]

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  1. Does the author have a blog I can follow? She explained my life (minus being a teacher ) to a “T”. I would love to hear more about how she navigates it all.

    1. I feel like she is talking to me too. I’m a parent of teen daughter with extreme ADHD. She is in a special needs school, and I still struggle.

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