Tag Archives: disability

Why I fight, why I protest, why I keep opening my big mouth

21 Jan

 

For this crazy lot.

I fight for them.

I protest so they don’t have to.

I open my big mouth when they can’t.

It’s not just about Maura and her disabilities – even if there’s more to fight for her than the other three kids. But when I fight to ensure Maura had a better life, I’m also fighting so that her siblings have a better life.

Someday, they will be her caregivers. I know that. They know that. They’ve known that for years.

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photo by Elisha Clarke

Collin, my oldest, has always watched over his littlest sister. He was aware of her lack of progress before most adults were. He keeps her safe. He looks out for her. He always has.

So I make sure that someday, when care giving is left to him, it’s as easy as possible. Which means I fight to ensure that Maura has the best education she can get, learns all the life skills she can. The more independence Maura gains, the more independence Collin will have someday.

I fight to give them both that.

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Sean and Maura 2011

Sean has always been the brother to play with Maura. He he’s been hefting her up since she was tiny. He still helps maneuver her when she can’t. He spent so much time following her on playgrounds, up climbing structures, letting her have freedom I couldn’t give her because of my anxiety. He was always willing to spot her on things, and let her expand her boundaries. He’s always ready to catch her when she falls.

I fight for Maura’s independence so Sean doesn’t always have to spot for her. Even though he always will.

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Mim and Maura after Mass – 2015

Miriam has always been the spectacular big sister. Even when I was worrying that Maura’s disabilities would keep them from having a close relationship, Miriam excelled in her role as big sister. She makes sure Maura gets to have all the fun she wants – and is by her side doing so. If Maura wants a tea party, Miriam will bake the cake for it. If Maura insists Miriam should put on a pink dress, Miriam puts on the pink dress. She is the best friend Maura has.

Someday, Miriam might be Maura’s primary caregiver. For now, I fight to ensure that Miriam gets to be just the sister.

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Maura and Mom – 2014

I open my big mouth for Maura, because she can’t always advocate for herself. She doesn’t have the words, so I speak as her representative. I fight for her rights. I fight for her future. So that she can have what she needs, what she deserves.

Maura deserves as much as her older three siblings. She deserves to have a fantastic life where she reaches her full potential, and is happy.

All my children deserve that.

So I fight for Maura. I fight so we all can win.

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My daughter’s right to an education should not be dismissed or “confused”

18 Jan
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Maura on the first day of school, blending into Seattle society with her 12th Man jersey.

Weekday mornings in our household are much like any other household with teenagers. Waking teens, outfit planning, rushing around to gather laptops and to find shoes.

At 7 am, the bus pulls up. We walk our daughter onto her special education bus, make sure she’s seat belted in, and wave goodbye.

Each day, we sent her off to her public school, where she joins other students like herself in a specific program for students with cognitive/intellectual disabilities. Her classroom is bigger than the average classroom because it needs to contain things like a swing for sensory input, a cushioned platform for when they need to lay down, room for wheelchairs, plus desks and tables and cabinets. Peer tutors – students from the traditional classrooms of this school – come in and help tutor my daughter and her classmates, which in return, teaches the traditional students what life is like for my daughter, and give them insights they otherwise wouldn’t have had.

My daughter spends the majority of her school time in that room. She leaves to do gym, have lunch, help deliver stuff to the office or go to a pep rally. Otherwise, her day is spent learning the things she needs to learn, with teachers and paraprofessionals who have the knowledge on how to teach her the way she needs to be taught. Yet her public school balances all this well, and she is part of the school community, is known and liked by other students.

We have tried inclusion in the past. It did not suit her needs. We found that smaller classes designed specifically for children with her types of needs gives her the best chance of being successful and independent.

Who doesn’t want that chance for their child?

This is why when I heard about Betsy DeVos’s nomination for Secretary of Education, I paid close attention. For I knew that Donald Trump had been quoted in the past that he’d like to possibly get ride of the Department of Education and with it, all the laws.

One of those laws is the Individuals with Disabilities Education Act – better known as the IDEA. A federal law, mind you. A federal law that gives my child the right to a public education.

The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.

Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B.

This is Special Education 101. When your child qualifies for special ed services, you learn about the IDEA and you learn about FAPE – Free Appropriate Public Education.

Free Appropriate Public Education (FAPE) is an educational right of children with disabilities in the United States that is guaranteed by the Rehabilitation Act of 1973[1] and the Individuals with Disabilities Education Act (IDEA). Under Section 504, FAPE is defined as “the provision of regular or special education and related aids and services that are designed to meet individual needs of handicapped persons as well as the needs of non-handicapped persons are met and based on adherence to procedural safeguards outlined in the law.” Under the IDEA, FAPE is defined as an educational program that is individualized to a specific child, designed to meet that child’s unique needs, provides access to the general curriculum, meets the grade-level standards established by the state, and from which the child receives educational benefit.[2] The United States Department of Education issues regulations that define[3] and govern[4] the provision of FAPE.

To provide FAPE to a child with a disability, schools must provide students with an education, including specialized instruction and related services, that prepares the child for further education, employment, and independent living.[5] (source: Wikipedia)

See, once upon a time, not so long ago, schools could deny children like mine an education for whatever reason they chose – too costly, too time consuming, not enough resources. This was also the time period where children like mine were often sent to institutions to live.

We no longer live in those times. And we shouldn’t have to go back to them.

So when I heard that during the confirmation hearing, that Betsy DeVos was “confused” by IDEA and unwilling to answer questions about if schools should meet the requirements of the IDEA. In fact, she said it should be left to the states.

What Betsy DeVos does not understand is that private and charter schools do not want students like my daughter. They are not equipped for students like my daughter. They have no place for students like my daughter.

I looked to see what schools there were in the Seattle area for children like my daughter. I found none. I also did this when we lived in Ann Arbor, Michigan – again, there were none.

Betsy DeVos supports voucher programs. But even if my daughter could attend the one private school in Seattle for children with mild learning disabilities like dyslexia, ADHD, etc, a $5000 voucher wouldn’t pay one-fourth of the tuition. And yet, that’s a moot point as they won’t take my daughter – she’s too disabled.

I think I have a good reason to be worried and frustrated by this nominee for Secretary of Education. She does not support public schools, she does not understand basic federal laws protecting students with disabilities, and she does not understand that when it comes to education, students with disabilities have few options.

Betsy DeVos is about school of choice – yet we don’t get choices. When my daughter started kindergarten, I asked what our options were. I was told “We’ll make this work.”

“But what if it doesn’t work, what are our other options?”

“We’ll make this work.”

There were no other options.

The fate of my daughter’s education is now up for debate it seems. Not so much what kind of education she should have, but if she’s deserving of one. That the possible Secretary of Education wants to leave it up for discussion at some other time is not good enough.

My daughter has a right to a public education. My daughter is just as deserving of a public education as any of her siblings. If you can’t understand that, or feel that should be discussed later on, then you don’t deserve to be Secretary of Education.

 

 

 

 

Sometimes you have to listen with your eyes

6 Jan
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picture – adorable lil spider dude on a leaf telling you “sometimes you have to listen with your eyes”. 

 

Maura is somewhat verbal – but not always in English, and not always coherent. So my job is to figure out what she’s trying to convey to me. Yes, I say “my job” because she is trying to communicate, and doing it the best she can – which is her job. Understanding her communication – that’s my job.

Luckily, I have years of practice with such stuff. Even better? Maura is a very expressive girl. When she smiles, her whole face lights up and the smile goes up straight into her eyes. When she’s tired, you don’t have to ask, her weariness is written across her face. And when she’s plotting against me, I know as well, there’s an extra sparkle in that girl’s side eye.

Just now, she was pulling stuff out of an empty tissue box. She loves boxes, loves putting things in them and taking them out. It’s part of our norm, so I didn’t think much of it, but instead, asked her what was in the box.

Mind you – the following bit was all non-verbal on her part.

She got a searching look on her face as she dug around the box, then did her wide-eyed, wide open mouthed surprise look as she showed me what she’d found in the tissue box.

A little round light blue bead.

She presented it to me to ponder.

“Is that an egg?” I asked – because Maura is into eggs, and it was robin’s egg blue. “Or is it a bead?”

She tilted her head a little, her eyes narrowing and her lips pursing, pondering this question herself. I waited for an answer, which came in the form of her aiming the little blue bead-like thing towards her mouth.

“I don’t think that’s food, boo.” I said with a laugh.

She paused, considered my words, then grinned, lowing the bead as if to say “You’re probably right.”, then put it back in the box.

And we both laughed about it.

Some days, Maura is “on” verbally – using words and sentences and making her point. Other days, she’s quieter, not saying much at all. Tonight? Well, it’s Friday, she’s been busy at school all week, and is probably in need of recharging. Being verbal might be too much for her right now.

But she’s still communicating with me. And I am still listening.

 

 

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