Youth Perspectives – Meet Hannah

From the youth perspective!

Hannah would like to share her story through three poems. These poems focus on Depression,
Bipolar Disorder and Bullying.

Thank you for taking the time to listen to them!

Below are her poems in the order they are presented:

Depression
By Hannah

Depression,
A dark void,
A black hole of life,
Happiness,
And,
Color,

Depression creates,
Hatred,
Anger,
And,
Sadness,

Depression makes,
Everything harder,
Everyone evil,
And,
Nothing fun,

A life with depression is,
Hard,
Long,
Terrible,
And,
Rough,

Depression,
A dark pit,
A never-ending torture,
But,
Always ends,

Depression ends when,
Happiness,
Color,
And,
Fun returns …

What is Bipolar
By Hannah

Bipolar,
But what is it,
What is it like,
Is it a disease,
Is it a bad thing?
A bad person,
A hateful burden,
No, it is not,
It is a mental health disorder,
A mood disorder,
One minute you are happy,
The next you are not,
You go up and down,
Just like a roller coaster,
Up and down,
Up being happy and/ or manic,
Down being sad and/ or depressed,
For some anger is not anger,
But fear,
Anxiety,
Worry,
Real anger is silent,
Retained,
Kept secret,
You hide,
Hide who you really are from the world,
So, no one knows you are bipolar,
The misconceptions and biases keeping you hidden,
For they are an unbroken lie,
An unstoppable lie,
For those who can fight,
Fight for those who cannot,
Helping those who can,
Feel safe,
Heard,
Believed,
Making the dark black and gray sky,
Bright and blue again…

Never Give Up
By Hannah

Why,
Why they all said in unison,
Why,
How could he do that to you,
No,
Wait a minute,
You are just messing with us,
Aren’t you,
My facial features change to peer rage,
Thoughts came racing in,
Then,
All of a sudden, their faces change to peer fright,
They start to back up,
But I was not going to let them leave without an explanation,
I yell STOP,
They pause,
And sank in to their seats,
Frozen,
Still and quiet,
I calm myself,
And start,
I start an explanation from the years before to the years after,
Their eyes widen us my words hit close to home,
Those words,
Those words,
Changed them,
Changed them forever,
Words,
Those powerful thing,
Words,
As l got to the piece about love,
The room was in tears,
From that day I told the bullies my heart-breaking story,
To now as I tell my story to a room full of people like me,
I tell over and over,
It gets a little easier each time,
I write a book,
I go to college,
And most of all I have family,
All of my family,
Yes, we are split in two,
But I can see him,
I can talk to him,
I can be with him,
Love,
That thing that can destroy or create,
The thing that can start wars,
And topple governments,
It can save lives,
Or destroy them,
Love the most powerful force just before words,
As I finish my speech of my life,
At the last second, I decided to add a hopeful comment,
Just because life is dark now does not mean it will always be that way,
You are not given a destiny or a purpose,
You make your own,
This comment,
The comment that my mother gave me during a dark time in my life,
I know it was not the exact comment,
But it was close enough to it,
To bring hope in to a roomful of people who really need it,
So maybe one day they will be able to tell their life story to those who need it,
All it takes is one who is willing to fight their fears and fly,
Fly higher than ever before,
To feel the release of pain,
To feel free,
And to help those who just need a friendly face to talk to,
As one-story ends,
Another will begin …

Assistive Technology

Assistive technology (AT) can dramatically affect the success of your special needs family member.

AT can give students equal access to curriculum, the work environment, or any other environment that use government funding.  Assistive Technology includes devices that are used by individuals in order to perform functions that might otherwise be difficult or impossible.

The AT can compensate for the impairments of the disability, increase classroom participation, foster independence, improve learning and working, assist in communication, and help the individual become successful in multiple aspect of life. In the school environment, assistive technology accomplishes these goals by allowing students with many types of disabilities to see, hear, read, write, and communicate.  In fact, assistive technology often provides the student with the only access to the general curriculum.

People who use AT products and services may have difficulty speaking, typing, writing, remembering, pointing, seeing, hearing, learning, walking, breathing, etc.  Everyone uses assistive technology.  We may not think that the things we use on a daily basis to make our life a little bit easier, like alarm clocks, planners, computers, talk to text software, canes, automatic windows and doors, lined paper, stools or chairs, the list could go on and on.  An individual with special needs may rely on AT devices to perform tasks and be more independent, enriching their life.

AT devices are protected under the law. This means that if there is need for an individual, then the use of the devices cannot be denied.  The Individuals with Disabilities Education Act or IDEA is the federal special education law that addresses services for children with disabilities, set into law in 1975. IDEA requires that states provide a free appropriate public education for children with disabilities, including related services. This law requires schools to provide necessary assistive technology devices and services to help children with disabilities receive an appropriate education. To that end, every child with a disability must be considered for assistive technology.

Section 504 of the rehab act protects qualified individuals with a disability in the US from discrimination in any program or activity receiving FEDERAL FINANCIAL ASSISTANCE—for instance: government offices, banks, educational institutions, hospitals and clinics, etc. So, if money can be traced back to the federal government through grants, loans, tax breaks, and the like. then this law is applicable.

When selecting AT devices, evaluating the product or device is critical.  The goal is to help or improve function, access or ability, not hinder or impede it.  Following the steps below can help us narrow in on the selection process.

Consider: Look at what tools are available and how they may restrict or support skills by doing a skills assessment. With an assessment, we are looking at the easiest or simplest way to solve the problem without distracting others or causing more difficulty for the individual, teachers, or other students.

Consult: After the needs are figured out, ask other people about the AT devices they use. Don’t be afraid to seek out professionals for advice.  Check out websites, blogs, and forums for advice on different devices.  Ask for examples of how the device helps, the limitations one might encounter, and pros and cons of the device.

Conclude:  Once a decision has been made about what is appropriate and what will meet the needs, it then is necessary to purchase, make, or obtain the AT and begin using it.  When we make a decision on AT devices, we must keep in mind that the needs may change, a person’s ability may outgrow the device, or that we might need to reevaluate.

Building in some flexibility when selecting the device can save time and money in the future.  For instance, if a person struggles to turn pages of a book, then an e-reader would be more appropriate.  However, if the person is unable to use a mouse and keyboard as well, then selecting a device that is internet capable may be a better option.  Before you purchase the device, try it out.  Each state has a National Assistive Technology center. Often, families can try out devices or other AT items prior to purchasing.  Below are a few links:

History of Quality Indicators for Assistive Tehcnology

State Tech ACT Projects

Early Childhood Technical Assistance Center

National Center for Technology Innovation

Things to remember about Assistive Technology:

  • AT levels the playing field by providing access
  • Each person requires different types of AT
  • One size does not fit all
  • AT does not have to be expensive
  • AT can change based on the needs, development, and milestones reached by the individual
  • AT is protected by law

“Working Together with Military Families of Individuals with DisAbilities!”

 

Q & A Transportation and Private Schools

I have enrolled my child in a private school in our town.

Q: She is also receiving special education services at our local district. We have been discussing if the District is responsible for providing transportation from my home to the private school. What are your thoughts?

A: We have Washington Administrative Codes (WAC 392-172A-04045: http://apps.leg.wa.gov/WAC/default.aspx?cite=392-172A-04045) that address that particular issue.

If it is necessary for the student to benefit from or participate in the services provided by a parentally placed private school, students eligible for special education services must be provided transportation.

This includes:

From the student’s private school or the student’s home to a site OTHER than the private school.

From the district school to the private school or the students’ home, depending on the time of the service.  For instance, if the student received the special education service at the end of the school day then transportation would be provided home.

Districts are not required to provide transportation from the student’s home to the private school.

Hope this helps!

 

Q&A – Should the Whole Team be Present for an IEP?

Amending the Individualized Education Program (IEP)

Q: My son’s special education teacher informed me she wants to have a meeting to amend his Individualized Education Program (IEP). It is not time for his annual review, but he has met some goals and objectives and she would like to change them. Do you think this is a good idea, and can we do this without the whole team?

A: Absolutely!  If you and the district agree with the changes and write an amendment that would be perfectly acceptable.  Again, both parties must agree and the full IEP Team should be informed – even if they’re not present.  Make sure you get a copy for your records and congratulations on your son’s progress.

 

Hospital to Home

Without a doubt, one of the most stressful situations you can face as a parent is the hospitalization of your child.

Whether it is a planned stay, like a surgery, or an unplanned event, parents are bombarded with a huge number of shifts in their day-to-day life and priorities. Parents are also expected to step in and provide a lot of the care a child receives in the hospital once they are back home and that can be extremely overwhelming. While the purpose of this article is for families with a child who is medically fragile or has a life-threatening diagnosis, it is also meant to offer ideas for the unexpected and planned hospitalizations that can occur in all our families. Hospitalization and Emergency Room (ER) visits for many families with a child who is medically fragile or has life-threatening diagnosis is an ever-present possibility. The hope is to provide some tool kit examples and some ideas to ease the transition back home.

As a parent who has spent a lot of time in ERs, Intensive care units, and the medical floor during hospital stays, I have found that I was better prepared for what was going on and the transition back home when I asked questions and shared what home was like with the doctors, nurses, and therapists. I also found that the hospital social workers were my best friends when it came to asking about support for me as a parent. Even before you talk with the discharge planner check in with the social workers. They often have information about support groups, outside therapists/home help, vouchers, and financial supports that you don’t have the time to think about while your child is hospitalized.

Building relationships and the supports for you with the staff caring for your child can help ease some of the overwhelming confusion.  Especially when there is an extended medical emergency or complex surgery with a long recovery. Keep a small notebook to write down and track what doctors and nurses do, and record the answers to your questions when you ask them. If you have a smart phone, there are multiple apps for this on both iPhone and android platforms. Most important of all is making sure you take time for you and self-care.  This is often the hardest part and frequently we know it’s what we need to do and focus on other pressing priorities.  Remember, when you take time to renew it helps you be there for your family. While your child is hospitalized, the nurses are there to take care of them, so find ways to re-charge. Take breaks and find quiet time for yourself because once you get back home you are often the nurse and parent.

Vital links for your family and your child:

This first link is from the Agency for Healthcare Research and Quality (AHRQ) and takes you to a website that gives some good basic information and links to checklists. After clicking on the link below this text, go to the middle of the page. There will be a link to the “Be Prepared to Go Home Checklist and Booklet” is a good general tool to use. https://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy4/index.html

The second link for a Neonatal Intensive Care Unit (NICU) babies or Pediatric Intensive Care Unit (PICU) babies and is really targeted to supporting parents of infants. https://www.ahrq.gov/professionals/systems/hospital/nicu_toolkit/nicu-packet.html

The last link is a great way for families of children with complex medical needs to prepare ahead of time just in case. This link is for the Family Voices collaborative care notebook template that has places for all of the information that goes with the care of your child. This tool can be used to provide information to the hospital and ER. Some families have used the child sheets or the emergency information sheets as a one pager to take with them to the ER or for extended hospitalization. This sheet provides the multiple doctors and staff that you see with consistent accurate information. There are also schedules that a child might need in their care and they can be used to record care needs in the home. http://www.fv-ncfpp.org/files/5813/0721/3621/Care_Notebook_-_entry_enabled1_reduced.pdf

These tools have been a great help in supporting my family with multiple hospitalizations and it is my hope they will be useful for you too!