Words Matter: 8 Statements From IEP Team Members That Have Truly Hurt Me

Teachers, principals, assistant principals, bus drivers, teacher’s aids, librarians, office staff, special education directors, school psychologists, OT’s and guidance counselors, I’ve had conversations with ALL of them.

I’ve discussed the good, the bad, the success stories, and the major failures.

I’ve requested, directed, strategized, and begged, apologized, thanked, praised and collaborated. 

Team meetings, conferences, informal conversations, evaluations, I’ve participated in all of them over the last seven years and managed to maintain my composure and gratitude for those that help my son on a daily basis.

Not all of these conversations are easy, in fact, most of them are downright painful.  It’s rare that you get a phone call or an e mail just to randomly tell you how wonderful your child is doing.  After a few years, I finally began to request that before launching into what’s wrong, we take a minute or two to discuss what’s right. 

Most of the time I welcome these conversations, it means they have taken the time out of their day to discuss my son’s education, health, and well-being.  I am thankful that they care enough to do this, going the extra mile for my little guy is not in the job description.  However, I have also heard some doozies over the years, utterances that have made my blood boil, my teeth grind, my eyes tear, and my brain scream…

… and, in some cases, literally cursing the messenger:

Is he on medication?  First of all, giving a child medication is a personal, family decision.  Whether he is or is not medicated should have no bearing on the level of care you provide for him.  With that being said, he actually takes a booster dose WHILE AT SCHOOL.  If you are a member of the team that provides bi-weekly services to my child, you should be familiar with every aspect of his plan.  As one friend said, “that’s just sloppy work.”

Oh, he is on medication, well, are you sure you give it to him every day, because some days it seems like he’s not on anything?  Are you joking?  Yes, I can see how, on rare occasions, one might forget to medicate their child.  But I think the bigger question here is, have you ever worked with a child with ADHD?  Medication is not a magic pill, while it helps significantly, it is NOT a cure all.  The only thing consistent about ADHD is inconsistency.  So yeah, some days, for no rhyme or reason, it might appear as though he is unmedicated. 

Have you tried outside therapies?  Now I know you must be joking!  Like every parent I know who has a child with special needs (or any extra medical challenges), I have done everything emotionally, physically, and financially in my power to help my child.  I often find that the school toss out unsolicited suggestions on how to help a child without considering the ramifications to the family.  Most often, extra therapies are not covered by insurance and families have to pay out of pocket.  I understand your limits as a school, I see that you are attempting to try your hardest, please assume that I am doing the same.

But he’s so brilliant!  I hear this one often, and while it might seem like a compliment, it really only serves to aggravate the situation more.  I know he’s brilliant, I also know that what he has achieved academically does not reflect just how smart he is.  I see that he works his ass off every day, thrice as hard as most of the other kids to only get half as far.  I take no solace in the fact that you think he’s intelligent, as he’s clearly not thriving, but just surviving.

I don’t have any power over the IEP team!  I believe I actually used the word “bullshit” when I heard this one.  As a member of the team, be it a teacher, OT, school psychologist, or SLP, your words and recommendations matter.  As a parent, all we can do is gather the information from our team and go forth to present our best arguments when requesting services for our child.  The information you provide regarding his or her performance is power.

He has the potential, I’ve seen him do it.  Yes, but he isn’t really doing it.  Much like its previously stated cousin, “He’s so brilliant!”  this statement doesn’t allay my fears, it only serves to enflame them.  He does have the potential, and in four years of being at your school, you still haven’t figured out how to maximize that potential.  When do we stop trying to fit my round peg into your square hole? 

PLUS, when this statement is made at a team meeting, it serves as evidence that what they are doing IS enough, they have “seen him do it!”  Instead of serving to open a discussion on ways to truly amplify his capabilities, it actually shuts the door permanently in my face.

All kids develop at a different rate.  So true!  But when the tests that you’re giving demonstrate that his development is significantly behind his aged matched peers, this condescending statement does not serve to alleviate my worry.

PLUS, when this statement is made at a team meeting, it often signals that they are about to shut down any special service request and use this statement as the reason, which is, simply put, shitty.

We’re just biding time.  Wait, what the what?  No, I want my kid to start thriving yesterday!  How long do we wait, how many different strategies do we try before we finally do what’s in his best interest?  He’s a little boy, not a science experiment.  What we do now, how permanent, lifelong, consequences.

Your words matter.  I am the primary care giver, the primary worrier, the mother of a child with special needs, the way in which I am approached about my child is key to my mental health.  In the end, you have my child on your caseload for a few years, I have to wage the war forever.  Choose your words and your delivery kindly, because most of us mamas have a good fight within and we won’t tolerate anything but the best for our children. 

ADHD: I LOVE Him, But His Poor Impulse Control is Killing Me.

I’m sitting at my desk at work, knee deep in charting.  I hear the phone inside my desk drawer ring, and I ignore it, too busy to deal with whatever it is.  Moments later it rings again.  I hear the impatience in the tune it spits out and I can’t disregard it anymore.  I close my chart and open the drawer, glancing down at the screen I see it’s the babysitter.  I have three missed calls from her.

My heart pounds.  It’s an emergency!

I call her back, and she assures me immediately that the kids are fine… HOWEVER, it seems that Man has stuck some metal into a socket and blown a fuse, the kitchen has no power. 

This is the third time that he has done this in the last year, so I know exactly how to walk her through fixing it.

I push the fear from my mind and the aggravation sets in- will he ever learn that that is dangerous?  Will he hurt himself, or someone else the next time he does it?  For there is ALWAYS a next time.

We’ve all seen THAT kid and THAT mom.  You KNOW the dynamic duo, you’ve met them before. 

The kid who is standing in the shopping cart, arms out, pretending to fly, as his sibling runs him down supermarket aisles.  His mother running after them, yelling angrily, embarrassed, and worried about concussions and broken bones.

The kid who is hiding in the clothing racks at Target, playing hide and seek.  His mother, frantically searching for him, frustrated, impatient, worried about a possible kidnapping.

The kid who just picked up that huge rock on the playground and tossed it across the field, oblivious to the 10 kids it almost hit in the head as it arcs nicely and lands on the ground with a loud thud.  His mother, shamed, desperately apologizing to other parents, worried that the other children will not want to play with him anymore.

For this child, knows not what he does, and this mother understands that… and it worries the SHIT out of her. 

Impulse control. 

It’s something that develops over time as the brain grows and classic conditioning does its job.  When we stick metal in a socket it shocks us. Therefore, the next time the thought occurs to us try it again, we are quickly reminded of the searing pain that coursed through our hand and the screams it elicited from our mom the last time tried that.  We decide not to do it again.  Simple.

This does not happen for the child with ADHD.

These are not magical children who don’t get shocked.  They do- and that shock hurt them just as much a their neurotypical pal who tried it also. No, it’s that they don’t stop long enough to think of the consequences of the last time they performed such an action. 

In other words, conditioning does not work as well with this population.  They have an idea and immediately act upon it.  The mechanism of the brain that says, “Dude, the last time you did that you got hurt, blew a fuse, AND your mom got pissed!!!” is completely absent.

In our house, this is the most challenging aspect of the ADHD diagnosis.

It’s easy to see how a lack of impulse control affects one’s behaviors.  If your child never stops to think of the consequences of their actions, that can lead to some pretty out-of-control situations.

But subtler, and more challenging to understand, are the ways it permeates EVERY. ASPECT. Of functioning for this child and their family.

Without impulse control, independent functioning becomes almost impossible.  At three years of age, this is expected, but by seven, eight, thirteen years of age, it’s unconscionable and exhausting for parents.

It affects activities of daily living:

Yes, we have all had to remind our kids a few times to put on their shoes or brush their teeth in the morning.  However, eventually they get it.  Sure, they might need an extra, gentle, reminder or two (or several) on days when they are not completely on their game.  But, all in all, by a certain age, your child can dress and bathe themselves somewhat to completely independently.

This does not happen for a child who lacks impulse control.  The verbal reminder is given, but suddenly, a bird is flying by the window and it’s cool and it’s red!!!  The sweat shirt is dropped, the child gleefully runs to the window and enjoys his birdwatching for like 20 seconds.  But then, something else of interest catches his eye!!!  The sweatshirt remains crumpled on the floor- a complete afterthought- until mom notices that her kid is wandering around the house naked, hyper focused on peeling the wrapper off of a crayon he found under the couch yesterday.  She calls out, “Go get dressed!” However, he has dropped the crayon and become engrossed in tapping the spoon for his morning cereal on the counter- he’s jamming!  He is deaf to her words. 

This happens every morning.  EVERY. MORNING. Until mom just gives up and sits next to her child, a child who is waaaaay too old for this, and dresses him herself.

It affects school:

Oh, how it affects school.  Do I even need to elaborate on this one?

It affects learning in such a substantial and significant way that it’s almost too much for me to wrap my head around.  I think people often think that ADHD just means a kid “can’t sit still.”  Yea, you know why? Lack of impulse control.

Paying attention in class, completing assignments, participating appropriately, prioritizing and organizing work, homework (oh the homework!), simply walking down the hall to gym class- it’s ALL affected.

It affects relationships:

God, does it affect relationships with both family and friends. 

This post is borne from the shame I have felt lately because I have been extra short with Man. 

As his mom, I am tired.  Tired of having to help him with everything. 

I’m anxious.  Anxious that he will never improve.

I’m fearful.  Fearful that I don’t have it within me to be the understanding and calm parent he needs all the time.  Fearful that I am just losing my patience.  Fearful of how much more I’m yelling lately.

I’m reminded.  Reminded constantly that it is all out of his control, he never, EVER, does this on purpose.  (Sometimes I think it would be easier to handle if he were, at least then my anger would be justified.)

It affects friendships, relationships with siblings and other family members, teachers, random strangers on the street, even the checkout guy at the drugstore counter.  Have you ever tried to have a conversation with someone who constantly interrupts you with their own stream of consciousness?  Eventually you just…

It affects one’s ability to truly master something, even something they love:

Mastery comes from the ability to practice and dedicate yourself to a specific task.  However, without impulse control, your ability to commit the time needed to achieve mastery is impossible.  It means that no matter how gifted you are, or how interested you are in something, you might never truly achieve excellence.  It’s as though you are trying your best, but your best just got up and walked away to do something else.  

This saddens me deeply for Man, as he is so brilliant and curious, yet, so far, he can only produce middle-of-the road success with everything he tries.

The hardest part, the most challenging and maddening part, is watching the one you love suffer because of something that is completely out of their control.  They, more than anyone else, are the most impacted by the lack of control they have over their own brain.  It often masks the kind, wonderful, interesting, and incredible children they are. They simply cannot make it function in the desired way and this leads to daily exasperation and regular disappointments.  They often work three times as hard and get half the results of their aged matched peers.

It’s this reason that forces me to push my own irritation aside, gather my strength, wrap my arms around Man, and be his scaffolding until he doesn’t need it anymore.

ADHD, Sobriety, and The Myth of Perfection

A year ago, today, I was so laden with anxiety, so overloaded with moving out of our home of ten years, that I was ready to call the entire thing off.  But it wasn’t just the move itself that was causing the stress, it was the overwhelming pressure I put on myself to move out of my messy, piecemeal, house- the one with mismatched furniture, rugs stained by years of toddler traffic, couch cushions ripped by gnawing animals, and a faint smell of dog pee in the basement- and into a new, clean, well-appointed home.  This home was going have clean, perfectly decorated rooms, it would be a real, adult home.  Most importantly, it would be the opposite of the home we were leaving behind.

The other day I was talking to my sponsor who also happens to be an LCSW.  She was wearing both hats while helping talk through a particularly challenging situation I was having at my internship.  I have had thrown for a loop by both a client and a colleague and it had my spiritual fitness in a funk. 

“Give yourself a break, Laura, you’re new at this, and you’re doing great.  You’re not expected to be perfect.”

This morning, I ordered a product called Skinny Fit (I’ll let you know if it works ladies).  We are headed to Florida- bathing suit country- in a few weeks and no matter what I do, I cannot get rid of this holiday spare tire.  If I’m being real, it’s more like the “giving birth spare tire” that I acquired almost seven years ago after having two c-sections in 18 months.  It’s never really gone away no matter how hard I worked out or how well I ate, and I’m tired of it.  I could hear the disapproval in my husband’s voice when I shared this new idea with him.

“No one is perfect, honey, do it if you have to, but I don’t think it’s necessary, you look great to me no matter what.”

Currently, I am sitting at the kitchen island in my house.  When I look up from the screen, my gaze falls upon a half empty room and a large bare wall.  You see, one year later, my house is not perfectly decorated, most walls remain empty, and we still need quite a bit of furniture.  But we are here, we are happy.  Having empty rooms has not stopped us from loving our new home and making new memories within its walls.

My need for a perfect house was gingerly tossed out of the back-door months ago.  Rooms will be filled over time and walls will be covered when we get around to it.  I let go of my expectation of perfection and a peace and tranquility settled over me.  I can enjoy my house, empty rooms and all, because it’s not about the furniture in the room, it’s about the family that fills it. 

I went back to my internship after talking to my sponsor armed with the knowledge that clients were supposed to challenge me.  I’m supposed to make mistakes and learn from them, and I’m certainly not supposed to have all the answers.  That’s what being a student and an intern in all about.  Furthermore, being a clinician is a life-long learning experience, I will forever be gaining knowledge from new clients and other clinicians.   I lowered my expectations for my interactions with my client and it helped tremendously.  She didn’t expect me to have all the answers and since I was visibly less frustrated with myself (and her), she was able to open up in a new and exciting way.  Giving up my need to be the perfect clinician actually allowed me to be the best clinician I could be in that moment.

As for the Skinny Fit, the jury is still out.  However, I did take a break from writing to take a huge scoop of peanut butter and lather it on an Oreo cookie, so I have my doubts as to its full effectiveness.  I’ve had two children and I love food, especially sweets, my body will never again be that of my 16-year-old self.  Some parts will still jiggle, many will still sag, and I can actively feel the folds in my belly touching right now, but I would rather have the perfect forbidden snack and be happy, than the perfect body and feel deprived. 

If it’s not obvious already, the theme of this post is perfection.  As a person who grew up with ADHD and as a parent watching my child grow up with ADHD, I can tell you that one characteristic is feeling like we can never reach our full potential- it’s like our best self is in a lock box buried deep inside and we cannot find the key.  I often watch Man, his brilliance stifled by his impulsivity.  Just last night at chess club, he imprudently made his next move and, voila, he was in check within 30 seconds.  When we were talking later that night, he was frustrated with himself, “I knew what to do, mom, but I made the wrong move anyway.”  This is a theme that permeates his life, and mine.  Feeling, no KNOWING, we can do better, but being unable to figure out how. 

It took me well into sobriety to realize that this was one of the reasons I drank.  It’s maddening to feel like you are capable of so much more, but not knowing how to get there.  However, while sobriety did give me the ability to get closer to achieving my best self, it also gave me permission to be imperfect.  I spent so much time trying to be better, to do better, battling an uphill battle, that it wore me down.   I see now that it’s not about winning the battle, it’s about deciding whether or not to fight the war in the first place. 

Perfection his highly glorified.  It is something that very few, if anyone, EVER attains.  There is only one gold medalist, one valedictorian, and one winner, and their perfections were equally hard work, luck, and confluence of other circumstances that affected their competitors.  It’s an image we all try and portray, I mean, when was the last time you posted a picture on social media that wasn’t perfect?

My friends, I give you permission to be perfectly, IMperfect!  Allow yourselves to make mistakes, but make sure you learn and grow from them.  Understand your own limitations, and accept them, embrace them, flaunt them!  Be who you are, defects and all, and love that person unconditionally.  Always remember, it’s progress, not perfection.

The Motherload

I walk into the house after eight hours of internship.  I brush sweaty, freckled child cheeks with a quick kiss hello and I’m off.  I begin emptying back packs and carrying soggy, musty towels to the washing machine to begin a load—how can they smell so bad after only one use?  I empty lunch bags, mine included, and load the dishwasher with seemingly endless containers sticky with residue.  I make sure to get the AM dishes in there too, you know, the ones that were left haphazardly in the sink from the chaos that is morning.  If I leave them any longer, the dried food glued to their sides might become permanently affixed.  With empty lunch containers in front of me, I immediately begin to repack them for tomorrow. Some random child calls from across the room; she doesn’t want that sandwich, she wants a different one—the kids have barely looked up from their post-camp television haze to acknowledge my presence, yet they sense that I am doing lunch wrong and promptly put a stop to it.  I usher one child into the bath and as I turn on the water I’m acutely aware of the fact that I haven’t gone to the bathroom since lunch.  I try to go but absentmindedly sit down on naked child who has beaten me to it and now the opportunity has passed.  I head across the hall and gather the requisite uniforms for campers attending two different camps. I’m lucky, it’s picture day at both of their camps so I only have to remember this fact once—two different picture days and it’s a guarantee that at least one of them would not be wearing the required camp t-shirt.  A blood-curdling scream comes from the tub; I think maybe she’s gotten shampoo in her eye.  I run, dropping the clothes on floor of the hallway.  When I get there, I realize it was just her rallying cry. She’s very proud that she has shampooed, conditioned, and gotten out of the tub to dry off all by herself.  Upon closer inspection I realize she actually hasn’t, that half of her head is still covered in shampoo—I let it slide. I continue on my way, there are still so many things to do…

 

The Motherload…

Run to the supermarket, we’re out of… everything.

Drop off the dry cleaning.

Pack Man’s lunch.

Pack Lady’s lunch.

Pack my own lunch.

Get to class on time.

Is it early drop off for camp today?

Don’t forget to call the auto body shop to order new tires before you have a massive blowout on the highway.

Pack camp bags—does she swim twice tomorrow?  Better toss in two suits just in case…

Wait, go back upstairs, you forgot it’s stuffed animal day and you need to pack Carrotty Bun Buns for her.

overwhelmed_woman

Get your own school assignment finished, it’s due soon.

Sign the kids up for Fall dance classes.

What day of the week is it?

“MOMMMMMMM, can I have some water?”

Get back on that school assignment, it’s still due soon.

Sunblock the kids.

Prepare to run group tomorrow at my internship.

Speaking of internship, am I doing a decent job, because it kind of feels like I suck at this.

When was the last time I walked the dog?  Was it today?

Return library books.

Pick up ant traps, it’s getting ridiculous in here.

Go back to the hardware store, you forgot the Draino.

When was the last time I ate a meal sitting down?

“MOMMMMMM, there’s no more toilet paper!”

Is the air conditioning working? Better call for an appointment before the next heat wave.

“Man, eat your dinner!”

Double check that Lady’s play date is still on—am I dropping her off or is she getting picked up?

Shit- unpack Lady’s camp bag so you can put labels on all her clothes.

Go to internship.

“MOMMMMMMMM, can you help me tie my shoes?”

Do it all.

Do it all with perfectly flawless skin.

Do it all without cellulite, while looking hot in those jeans.

Do it with manicured fingernails.

With a stylish outfit on.

While getting a nutritious dinner on the table every night by 6:30.

With a smile on your face, a skip in your step, and without missing a beat.

 

What any mother can tell you is that this is just a fraction of what runs through our minds daily.  It’s called The Motherload.  It’s intense and it’s a bitch.  It’s the never-ending mental list that streams on a loop in our heads, always.  It’s our theme song- our anthem- the beat to which we march.  It’s with us in the shower, at the dinner table, at work, on line at the CVS, when we are driving, even when we are sleeping…or not sleeping because The Motherload is keeping us awake.  It’s a million tiny balls all up in the air at once; if one falls, they all fall, raining down heavily upon us leaving us battered and bruised.

I have been crushed by The Motherload lately.  With the recent loss of our babysitter coinciding with the start of my graduate internship and summer school—a time when my satanic professors feel It’s important to cram 15 weeks of work into just six short weeks.  And as much as it pains me to say this, I have brought part of it on myself.  I told my husband that I didn’t need a new babysitter until the Fall, that I would be just fine for the summer with work, school, and the kids all by myself.

What the fuck was I thinking?

I was thinking I could handle it.

No, I was thinking I should handle it.

There is a significant difference.

As mothers today, we are made to feel we should do it all.  We can have that fantastic career, thriving social life, happy, seamlessly operating home, and lovely, well-raised, children along with our sanity completely intact, all tied up neatly with a bright red ribbon.  Somewhere, some little voice in a remotely accessed corner of my brain screamed, “You don’t need any help, you should be able to do it all!!!”

This, my friends, was where I was wrong, because I can’t do it all on my own, not without being leveled by The Motherload.

Mothers unconsciously carry so much of the load and I fear it’s because we feel we have no other choice.  However, I’m beginning to see that the harder I work, the less I should be doing.  I need to unload, to give up on the idea that it all must get done, done well, and done by me.

When Sensory Eating Turns Into Failure to Thrive: A Horror Story

As a student of Mental Health Counseling, I often think of a diagnosis as a tree trunk.  There is one, solid stable disorder planting its roots and from the symptoms of the disorder, a branchlike network of additional challenges and diagnoses blossom.  I have discussed Sensory Processing Disorder (SPD) before (Imagine Your Child With Sensory Processing Disorder), this diagnosis has planted a giant Redwood like tree trunk in our front yard.  There are a multitude of symptoms that have allowed additional problems and disorders to branch and bloom, casting a large shadow over our entire house.  One such symptom is sensory eating, and from this symptom a tangled grid of branches has formed to develop a new and even scarier diagnosis, Failure to Thrive (FTT).

In my post, Sensory Eating and Picky Eating are NOT the Same (Picky Eating and Sensory Eating Are NOT The Same! A Guide to Improving Feeding in Sensory Eaters), I discuss the differences between a picky eater and a sensory eater.  The major difference, the most significant and frightening, is that sensory eaters would rather go hungry than eat a food that would disturb their bodies fragile peaceful state.  Man is a sensory eater.  Most people assume that that means that he can’t eat certain textures.  We all know people who can’t eat tapioca pudding or cottage cheese without having a visceral reaction.  Personally, I couldn’t eat shrimp until well into adulthood because that rubbery crunch gave my body the heebie-jeebies.  But for Man, it’s flavor intensity.  He cannot eat foods that have too much flavor.  When he was three-and-a-half he mistakenly grabbed a garlic flavored cracker off the counter and before he could even finish chewing the first bite he broke out into a cold sweat, his eyes began to water, and his entire face turned bright red.  His body was literally rejecting the flavor.  He couldn’t eat for the rest of the night.

Years of having such extremely intense bodily reactions to flavors have naturally resulted in extremely poor eating habits and dread around food and mealtime.  I mean, if every time you put food into your mouth it made your body feel pain, would you want to eat?  In our house, mealtime brings fear and anxiety, not pleasure and excitement.

You see, from day one, every bite of every meal that has gone into his mouth has been prompted by me.

“Eat, Man.”

“Take that bite, Man.”

“No, you’re not finished yet, Man.”

I can remember when he was younger, I would bring him his breakfast on a Monday morning and think, “Here we go, 21 meals and the week will be over.”

Meals can take upwards of an hour-and-a-half.  He laboriously chews each tiny little bite, bites small enough that he really won’t have to actually taste the food, while I would stand there, trying to stay calm, encouraging and supportive.  If I walked away, he would simply not eat.  I’ve tried everything, and there have been times of improvement.  He does eat some new foods, but ultimately, the quantity he eats remains the same; poor.

After many years, I decided that I did need to walk away and just let him be.  Mealtimes were causing me such stress, anger, fear, and resentment that I didn’t want to be around him at all anymore.  I forced myself to accept that he was going to eat what he was going to eat and that was going to have to be ok.  I couldn’t help him in any way if I was internally fuming and freaking out three meal times every day.

That tactic worked for a while, he wasn’t growing a lot, but it was steady growth at his own slow rate.  That was until our most recent visit, where we found out that he has begun to lose weight.  Now, a seven-year-old boy that only weighed 38 pounds, was a mere 36.5.  This has brought out the anxiety that I have tried to keep in check for all these years.

When we heard the news, it sent me into a frenzy and I yelled at him.

No, I screamed, I threatened, and basically tried to instill a fear in him that would force him to eat better, that would allow me to remain in my protective “Man eating bubble.”

I am ashamed, and it brings tears to my eyes and an ache to my heart to know that I made him cry so much about something that he really has no control over.

I vowed to get my fear in check and help him in a calm and loving way.  And that worked… for a few days.

Can you imagine what it feels like to have to remind your child to take every bite of every meal that he has ever eaten in his entire life?  It’s exhausting.

Can you feel the anxiety through the screen as I even type those words?  It’s palpable.

Like an alcoholic picking up a drink after a period of sobriety, I picked up my anxiety about his eating right where I had left it.  It has now intensified to such a severe level where every morning I’m yelling in a way that humiliations me to admit.

Every meal I look at his gaunt body across the table.  I see the dark rings of malnourishment under his eyes. I watch him pull up the pants that are sized for a child half his age as they slip down while he trudges across a room and I yell.  I yell out of fear.  Fear for his health.  Fear for his growth.  Fear for my own sanity.

Mostly, I just feel and incredible guilt every day.  This is obviously my fault because I can’t handle making sure he adequately eats each meal.  This is obviously my fault because I’m not finding the magic cure that will make this all better.  I’m obviously only making it worse by revealing my anxiety and fear to him in such a loud way and angry.

I just wish I could find a chainsaw strong enough to cut the branches of FTT off at the root, because right now, I’m terrified that this tree will fall and crush us underneath it’s weight.

FTT

Your Child is Too Smart for an IEP

“I have good new for you!  We are declassifying your son!”

This statement was recently conveyed to a friend by a member of the Special Education Department at her child’s school… and it was decidedly NOT good news.

This has been a running theme with many of my friends and fellow special needs mama warriors lately: declassification from Special Education and the removal of their child’s IEP because recent test scores show that they are “too smart for an IEP.”

It’s infuriating.  If you think about the way the ADHD brain functions this statement doesn’t even make sense!

This very concept has struck a chord of fear within me.  Am I going to walk into Man’s next meeting and fight to maintain the Special Education services that he desperately needs just because he happens to be producing grade level work?

Most children with ADHD and other behavioral and emotionally manifested disorders are, in fact, quite smart.  We had Man tested recently and, as expected, the scores show that he is NOT intellectually disabled.  They indicated that his IQ is adequate to maintain age appropriate, grade level work, if not work that even is somewhat above grade level.

However, his ADHD makes that impossible.

My incredibly smart and gifted son can program a computer yet can’t find his way out of a paper bag.

Why?

Because the ADHD brain lacks executive functioning skills.  This means he can’t organize his classwork, he doesn’t know where or when to start an assignment, or how to pace himself so his brain doesn’t fatigue a third of the way through.  He can’t remember the materials he is supposed to gather, or if he was supposed to do it in pencil or crayon.  He can’t plan each step out or problem solve if he get’s himself stuck.  Therefore, it doesn’t matter what his IQ is, he cannot use his intelligence effectively without the help of the Individualized Education Plan that creates goals and accommodations to account for his lack of Executive Functioning.

My incredibly talented and smart child has a command of math that is beyond his years, but some days he can’t add 2+2.

Why?

Because the ADHD brain lacks the ability to regulate emotions.  This means that if he is feeling too anxious, his brain might just shut down.  If he is extremely angry or sad it can affect him to the point of being unable to complete classroom work that day.  If he is tired or overwhelmed simple tasks begin to seem insurmountable and he just gives up and walks away.  Therefore, his excellent math skills don’t matter, he cannot use them effectively without the help of the Individualized Education Plan that creates goals and accommodations to help him with emotional regulation on the days when he simply cannot do it for himself.

Some days, all you see is Man’s ADHD.  It’s worn like a badge, displayed like an eye sore across his chest.  Everything he does, everything he touches, is affected by it.  Without an IEP in place every day the bad days wouldn’t just be bad, they would be disastrous.

Some days, Man’s ADHD is imperceptible.  A mere hint showing itself at random, innocuous moments, leaving him undisturbed and highly functional.  Without an IEP in place every day these great days would only be somewhat satisfactory.

The only thing consistent about ADHD is its inconsistency.  Frustratingly, its symptoms will come and go without rhyme or reason.  Some days its sufferers will be super-starts, far exceeding the expectations of those around them.  Other days, they will be deceived by their very own brains, and even the simplest of tasks will seem impossible. Therefore, the accommodations and support that an IEP provides must be a constant.  The solid steadiness of that IEP is a vital guide for grounding these fragile, ever fluctuating students and their teachers.

No parent wants their child labeled or “classified.”  If we could fix our children and make their brains function perfectly, we absolutely would.  However, you are not calling us with “good news” when you tell us that you want to eliminate the services that they rely on to manage school successfully.  You are essentially removing their lifeline to victory.

Being intelligent and being able to effectively use that intelligence are two entirely different things.  Intelligence is so much more than just being “smart.”  It’s a combination of a thousand distinctive characteristics that must all be operating in synch with one another, like a well-oiled machine.  ADHD takes a huge wrench and just gingerly tosses it into that machine.  It doesn’t matter how “smart” a child is, an IEP works as a tool to eliminate that wrench so our children can effectively use their intelligence.

I understand that a 504 is a valuable resource.  It makes sense that schools want our children to thrive in the least restrictive environment.  However, academic demands change drastically from year to year, as does a child’s social and emotional growth.  The rush to declassify, an act that is virtually impossible to reverse, prior to a child demonstrating long-term, consistent success across a few grades seems drastic and irresponsible.  We should be more cautious with our children, as even the slightest inkling of failure and struggle can have dire consequences with this population.

So no, I refuse to accept that any child is too smart for an IEP.

Child with learning difficulties

Parenting: One Part Helplessness, One Part Hope, And The Rest, Blind Faith

“Parenting doesn’t come with a manual.”

 

When I hear this sentiment uttered, it evokes an image of an elderly grandmother as she glides past a mother and her prostrated, screaming child in an aisle at Target.  The child is having a full blown meltdown and the mother, exasperated, is attempting to do everything in her power to just get that child up off the floor and the hell out of the store.  The grandmother, an “all knowing” smile on her face, chuckles to herself as she walks by while whispering this statement to the mom.

 

milliemeltdown

Did someone order a massive public meltdown?

We have all been there.  You know—those terrible and terrifying moments of parenting when all you can think is, “I have no idea what I am doing, but I hope to God it’s the right thing.”

 

I recently wrote a post called  https://manvsmommy.wordpress.com/2016/10/03/adhd-how-my-son-is-already-failing-the-first-grade/.  Many people commented, but even more people sent me private messages or approached me personally.  The circumstances of each person’s story varied, but the feelings shared were all the same, those of utter and complete helplessness.

 

“I work on her reading every night with her, but she’s not improving at all.”

 

“I’ve taken him to every feeding specialist there is, but he’s just not eating well.”

 

“I tried a new psychologist yesterday, but she seemed like all of the rest.”

 

“I tried a new medicine, but her asthma attacks are still so severe.”

 

The desperation in their accounts is palpable; it is laced with a sense of helplessness and a desire for a renewed sense of hope.  As parents, we try everything for our children. No stone goes unturned.  No book, pamphlet, webinar, or podcast is missed.   We are willing to listen to people screaming from atop their soapboxes if it means that there might be some answer to the challenges we face with our kids.

 

Feeling helpless as a parent has become as much a part of me as feeling like a successful one.  I do all I can for my children; I am trying my absolute hardest—but at times it seems insufficient.  I can read the books, study them, highlight the important passages, and then put their suggestions into play.  I can talk to the doctors, see new doctors, and take suggestions from other parents in similar situations, but nothing appears to change.   At one point, we just have to accept that we have done all we can do and let our faith do the rest.

 

Parenting is one part helplessness, one part hope, and the rest, blind faith.

 

As helpless as I feel, I have faith.  I believe that although I might not see immediate change, the fact that I am doing everything I can is enough.  I know that my heart is in the right place, it is with my children every day.  I understand that I will not feel helpless forever, and that there will be times where I feel completely ahead of the parenting game.  I trust that my best is good enough and that as long as I keep fighting things will continue to keep moving in the right direction.

 

The periods of time when I feel most helpless are also those that require me to have the most hope and the largest amount of blind faith.  I do not do it alone.  I count on my husband, my family and my support network.  It doesn’t just take a village to raise a child; it takes a village to raise a parent.