Why My Son’s IEP Goals Sometimes Make Me LOL

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Anyone here ever look at IEP (individualized education programs) drafts and laugh at the goals?

No? Just me?

Now before you rip my head off, keep reading…

I don’t laugh because I think my son can’t do it. I laugh because half of these goals are on my shoulders, and I think, How the hell am I going to pull this off?

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I have to get my son to do these things. I home/cyber school him, so half the goals are geared towards his therapists, and the other half are geared towards what I have to work on with him.

“No more than two verbal prompts.” Do they KNOW my child?

“On-task behavior for 30 minutes at a time, 80 percent of the time.” With ADHD?

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I laugh over the ones about licking food — or even about eating it. I laugh because I’ve been trying to get him to do that for years. I’ve been puked on. I’ve had my dinner puked on. Just over getting him to try something new. Food aversions aren’t this easily overcome. I pray the new occupational therapist has a tarp or a parka to keep the puke off her nice work clothes.

Next up we have the self-care goals. These don’t make me laugh. They kind of make me sad. Liam will be 9 in May. He has tied his shoes once. It took a lot of tears to get there. Now he refuses because
“It’s too hard, and I just can’t do it, Mama!” He can’t button. Snapping is a struggle. Zippers? He can’t zip his coat either. If you start it, he can. But he can’t put his coat on and zip and snap it. These goals I pray the occupational therapist can pull off. I pray Liam will do his best for her and learn these tasks. I know it will make him feel so much better about himself. You can do it, baby! Mama knows you can!

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You know what Liam hates more than tying or zipping? Writing. His cyber school sent me the “Handwriting Without Tears” curriculum. That title is super deceiving. He had tears. I had tears. I
think the dog lying next to his desk even had tears, hearing her boy so distraught. Liam’s reversals and the mix of capitol and lowercase letters are quite bad. Thankfully the OT will be working with him on this. I don’t know how much more my heart can take. Watching your baby struggle day in and day out is hard. Home schooling is definitely not for the faint of heart.

There were a lot of other things in his IEP that broke my heart. For his privacy, I’m keeping that to ourselves. It’s hard to see in writing where your child falls short. It’s hard to swallow.

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So I guess, part of the reason I choose to laugh at some of these goals, is because other things in the IEP are hard for me to handle.

Then I step back. I look up from my writing, and I see a happy, handsome and fairly healthy little boy busy lining up his comic books and humming to himself. In that moment, I know that no matter where he falls short, no matter where he lacks, he’s happy, and he’s mine, and I love him more than life itself.

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What I See When I Look at My Undiagnosed Daughter

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Adelaide is unique. Of course, every child is unique. We learn this in kindergarten as we cut folded-up pieces of paper into snowflakes and listen to a story about how we’re all different and special and bring our own flare to the world. But Adelaide is heartbreakingly unique.

My pregnancy was normal. Our ultrasounds were textbook. Her scheduled December C-section was uneventful. Her hospital tests were unremarkable. She was a quiet, happy baby who latched her first feed and did everything according to schedule. There were a few hiccups along the way, but she was a sweet, content baby. She was slower than her big brother with milestones, but that was just her laid-back personality. My two little snowflakes. But, almost overnight, we went from normal to taking-her-time-with-things to there-is-something-very-wrong.

The whole world stops when you start hearing words. Frightening words. Non-verbal. Bilateral frontal polymicrogyria. Wheelchair. Mega cisterna magna. Hypotonia. Physical therapy. Thinning corpus callosum. Drool bibs. Unknown life expectancy. Colpocephaly. Seizures. No cure. Hearing loss. Flattened pituitary. Leg braces. Vision deficit.

And you see a snowflake cut-out hanging up in a children’s hospital and think, “She was supposed to be unique like a snowflake. Not the kind of unique that makes doctors say they have no answers, that they have never seen another child with her mix of brain abnormalities. Mix. Like a blizzard. I’m in a blizzard now. Lord, please lead the way.”

More than two years after her first MRI and genetic tests, Adelaide still can’t be diagnosed. There is no hyphenated name for whatever happened to her DNA. There are no indicators of future progress. She is completely unique. Her snowflake has an abnormal pattern. Her brain has an abnormal pattern.

She does everything on her own timeline. This child who came into the world at exactly 8 a.m. and nursed every three hours on the clock now sets her own schedule. Some days, she defies what doctors thought possible. Other days, she makes no progress at all.

A unique mix. Drifting where she pleases and causing me to stop in my tracks every day and marvel at her rare beauty. Gorgeous and breathtaking from the moment she was born one December morning.

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Read more from this journey on Little House in the City.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Yes, Autism Can Be Funny

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cat the hat I have a 19-year-old with autism. He’s somewhat verbal now but uses a letter board and a scribe in college.

What I would tell myself if I could go back to the day we got the official diagnosis?

You were right.

Change that diet right now.

Start a campaign for permanent living for adults with autism.

Push for inclusion earlier with an aide.

Start the letter board at the HALO clinic at age 5 instead of age 12.

It’s going to be a long road.

Take time to do theatre, be creative; it will give you wings.

Worrying doesn’t fix it, and there is no magic cure.

Do what seems right. Ask a lot of questions.

Write down the funny things he says so you can one day write an “Autism is Funny” book because sometimes autism is funny! He’s so logical. “Matt your shorts are inside out.” “I’m gonna rock this town, rock it inside out,” he says back. Yes, autism can be funny.

I’ve cried too many tears and likely have many more to cry. But in the end, autism will be my life’s purpose, and we will both laugh at what a crazy ride it’s been.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How I’ve Learned to Accept the Dark Days of Autism

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I know from the moment she gets up today, it’s going to be a dark day. Even though we had a great day yesterday — we visited with friends and she slept beautifully — the angry grunting and growling has given me my cue. I take her to the bathroom in silence, taking off her nighttime diaper that we didn’t need a few short weeks ago, and put her in panties. That’s how it goes with autism — two steps forward, one step back.

I bring her out to the living room, turning on her favorite cartoon on low. I crush her anti-anxiety medicine and autism medicine to a pulp and add it to a glass of warm milk. When I walk back in she grabs it greedily from my hand; no “thank you” today, even though her manners are usually flawless. I don’t push it, not today. I make it back to the kitchen, make coffee and start scrambling her eggs; I still hear the occasional grunt and growl. I ignore it; long ago I learned that days like this my voice or any extra noise only annoys her further. I bring her eggs in and set them on her table. I don’t even watch to see if she goes for them; I exit back to the kitchen, looking over my list of to-do things for the day. I scratch off almost everything, realizing we’re not leaving the house today and probably not even going outside because of the snow lightly floating down. I look over and realize with a sigh, despite her being aggravated today, I have to get some wash done. My laundry room is right next to the kitchen and my daughter hates the sound of the washer and dryer running. They’re top-of-the-line front loaders that I bought mostly for their quiet running cycles.

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I hear a clang and bang that I’m familiar with; my child has thrown her bowl of eggs. I walk in to see; she actually ate the eggs before flinging the bowl. I pick it up and send her to her room; time-out is the only punishment I doll out. I don’t even raise my voice. Instead I whisper and say “to your room for throwing the bowl. That’s not nice. You can come out when you have stopped crying and get control of yourself.” She is throwing a tantrum and extremely angry with me, but she moves her butt and slams her bedroom door for good measure.

I make a second cup of coffee and sigh, as I take out my first load to fold out of the dryer. I think to myself about how restrained I am now and how calculating and strategic I’ve become at this strange game we play. Dark days are caused not only by autism, but sensory processing disorder (SPD) and anxiety and panic disorder. My child has this disastrous combination of a diagnosis. Today, I blame less on autism and more on SPD; it’s almost as if even the lights bother my girl today. The rumble of the furnace going on and off, the ringing of the telephone… every little thing can make today worse on her.

She’s told me before that dark days feel like her ears are going to explode and everything she hears sounds like screeching tires in her ears and on top of all that, her stomach aches and she’s nauseous and her head pounds. That’s a beautiful thing about my child — she is verbal. She was silent to the age of 3, but these days she almost nonstop talks. She’s good at describing how she’s feeling when she’s not stuck on repeat and talking in circles.

Today will go like many before us. I will stay silent most of the day. I will take great care to not make unnecessary noise or walk by her swiftly. I’ve learned passing her too fast can cause her to lash out at me; she says I whoosh by her and it scares her. I start putting away clothing in the drawers in nice neat stacks, and I smile.

Today I will get a chance to sit down and read a book. Even though she’s angry, she doesn’t want to be alone. She enjoys the company. So I sit on the couch and pick up my kindle. I will get lost in a romantic comedy and sit on my side of the couch. She flops her body next to me and leans against me. I lightly wrap my arm around her and squeeze her shoulder whispering, “I love you, GG.” She doesn’t say anything back, but she’s not growling or grunting at me. I smile because I’ve played the game well today. My girl has had time to calm down, and the medicine has started to work.

I look outside at the dark, cloudy sky and see the snow falling, and I smile. Years ago this day would have been a nightmare. I would be raising my voice trying to control her actions, and she would be raging right back at me. I would probably end up hurt and my house would be wrecked, throwing me into a deep depression. I think of how far we’ve come, how therapy and instruction from her occupational therapist has made today better. I learned what I can do and how to relax because I know the game plan.

Today is a dark day — literally and figuratively. I know just as the ground outside needs moisture, my child can also benefit from a down day. I know tomorrow will bring the sun and melt away a bit of the snow that’s stuck to the frozen ground. Tomorrow my child’s nerves will thaw and grunts and grows will make way for smiles and giggles. Tomorrow I will get a thank you and she will speak to me excitedly. She will happily climb up on the counter to help me stir her eggs, she will sloppily poor half of my coffee into her glass and act like a big girl sipping it with me as we share breakfast and decide what to do and where we will go.

I know what tomorrow will bring, so I can smile and accept today, not reading anymore into it than what it is. A down dark day, and I’m finally OK with it.

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From a Mom Figuring Out a New Autism Diagnosis

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Riggin.

We named our kid after a fictional high school football star (“Friday Night Lights,” anyone?) and our favorite former Washington Redskin. Everyone said our kid would be a badass based on his name alone, before they even met him. His twin brother would be the studious one, and Riggin would be the athlete. He’d be strong, a lady’s man and would stick up for his brother when the big kids called him a nerd.

Riggin was born eight weeks premature. We knew he’d have to play catchup and that things like his first laugh and first words would be delayed. At his 2-year checkup, I remember asking our pediatrician if he was on track with his speech; he only had a few words at that time and wasn’t making sentences. We’d ask him things and wouldn’t get a response. He’d throw monster fits over small things because he couldn’t communicate. Sometimes he’d line his toy cars up in a row, but couldn’t explain why. When he got really excited, he’d flap his hands around. The pediatrician assured me Riggin was fine; his speech would continue to develop, don’t sweat it. I wanted so, so badly to believe the doctor. All kids pitch fits, right? And get easily distracted from answering questions? He was probably flapping his hands because he didn’t have the words to express how excited he was to eat my cabbage rolls.  And, what’s the big deal about lining up cars? Maybe he was pretending they were at a McDonald’s drive-thu.

But that little voice kept asking me, What if there’s something wrong? So we got him tested for developmental delays. He was definitely speech delayed and would need speech/language therapy. But aside from his language, Riggin was a smart, averagely developed kid. He could sort objects like no one’s business and throw a ball better than Tony Romo (reminder: we’re Skins fans).

We knew, though, that hand flapping and lining up objects is a sign of autism spectrum disorder, so we also had him tested for ASD. At this point, Riggin was nearly 3 years old, and his personality was taking shape. He loved trains, superheroes and dogs (in that order). He had a huge imagination. He was friendly, sociable with new people and loved giving hugs. He did silly things just to make me laugh, and a few times when I didn’t feel like laughing, he’d put his hand on my cheek and ask, “You OK, Mama?” We were expecting the autism team to tell us to take a hike and quit worrying about our kid. Kids with autism aren’t imaginative, right? They don’t understand emotions or make jokes, and they really don’t like new people, right? But, we were wrong apparently, because they told us Riggin has high-functioning autism. They told us he flaps his hands because it feels good. They said he doesn’t answer questions or interact in conversation because he doesn’t know how. They said he throws fits over small things because to him they are huge things that seem impossible to get over.

The diagnosis was only two months ago, and I’m still very much coming to grips with what it means. My inner snark keeps suggesting maybe the doctors are whack-jobs who think everyone is on the spectrum. Maybe Riggin is just barely on the spectrum; maybe it barely even counts. I’ve a hard time thinking about the alternative, because that means he’ll have this disorder for the rest of his life. I’m so scared of what that means and how it’ll change my dreams for him. Will he be the “weird kid” who does weird stuff like flap his hands and mumble? Will sports be a no-go? What about dating? Can autistic kids date?

Then I realize my dreams for him need to change, because it doesn’t matter what “autistic” kids do — they aren’t Riggin, and Riggin can do anything. He can play sports, be an honor student, paint masterpieces and date a different girl (or boy, whatever, it’s his call) every week if he wants to. I shouldn’t be scared for his future, because it will be bright and amazing and uniquely his, no matter what challenges autism throws at him.

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The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Watch Disney Princesses Bring Magic to a 3-Year-Old Cancer Patient

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Madelynn Nelson, 3, was re-diagnosed with stage IV neuroblastoma two months ago following a period of remission, WLTX 19 reports. Because Madelynn’s favorite thing in the world is Disney princesses, The Make-A-Wish Foundation had planned to take her to Disney World at the end of the month. Sadly, Madelynn is not responding to chemotherapy and doctors think she may not live long enough to make the trip.

So Disney World came to her.

On a remarkable night in Irmo, South Carolina, Madelynn and her family received a visit from the Disney princesses themselves.

“I have just been praying for us to get to tonight so she can experience it,” Madelynn’s mother, Amanda Nelson, told WLTX. She says her family’s focus is on creating lasting memories with Madelynn and making every day a meaningful one.

See footage from Madelynn’s visit with the princesses in the video below:

To read more about Madelynn’s diagnosis, click here or search the hashtag #teammadelynn.

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