Sexual Assault and other Crimes against People with Disabilities

Crime and discrimination against people with disabilities is a growing problem. What
makes it worse is that many incidents do go unreported. Some people refer to this as
the silent epidemic because of the inability of most victims to verbalize, to know what
is happening, or to have the courage to defend themselves. Reportedly, most abuse occurs by the people they are supposed to trust (e.g., parents, family members, or other close caregivers). The abuse can range in severity and include:

  • Sexual abuse
  • Financial abuse
  • Physical abuse
  • Verbal abuse
  • Emotional abuse
  • Intimidation
  • Bullying

Whatever it may be, individuals with disabilities should not be living in fear of people
who should be their protectors. It is important to listen to our loved ones with disabilities, even if we cannot fully understand what they are trying to tell us. There might be something happening to them when we are not around and we need to establish trust. We must be active listeners and take their concerns and comments seriously.
According to the CDC Disability and Heath, four out of ten adults with disabilities experience abuse, but it is twice as likely for children with disabilities. An alarming rate of 90% of all people with disabilities will experience some kind of sexual abuse in their lifetime. Also, 49% will experience at least ten incidents of abuse in their lifetime.
According to the Department of Justice, in a period of just three years, the crime rate against people with disabilities had doubled. It went from 12 victims per 1,000 people to 24 per 1,000. This was from the years 2009-2012.Some of the reasons that people with disabilities make easy targets for abusers are because often they are segregated from others, lack self-protection skills, lack community skills, and lack communication skills. These are some things you can work towards improving at home.
Having these skills can improve their lives and keep them from harm. It can also help them speak up and acknowledge when someone has done something to them. Another major reason they may not speak up against abuse is, they have been taught to be compliant, to follow instructions, and obey authority. But they are not being well
educated on their rights or they cannot tell the difference between who/what to obey
and who/what not to obey.
Sadly, most of these crimes go unreported! One of the major reasons individuals with disabilities do not speak up about their abuse is fear. They may fear the individual (s)
who harmed them and fear more abuse. They may also fear that no one will believe them. Other fears may be that they will be blamed or punished, and of losing their services, home, job, family, or friends.
According to disabilityrightsca.org, another reason why they go unreported is that they rely on others to report abuse or neglect for them. This can be because of their lack of communication skills or lack of knowledge on how to report it. For unknown and frustrating reasons, many times reporting and investigation of crimes against people with disabilities are delayed or sometimes even pushed aside. This may be because they do not have someone there advocating for them. Sadly, this means that only about 5% of all of the crimes committed against people with disabilities are prosecuted. For incidents that happen in programs or homes, they are often looked at as employee issues rather than actual crimes.
Here are some tips to use when someone with disabilities is trying to speak up about
abuse:

  • Allow plenty of time
  • Use everyday words
  • Meet in a safe place with few distractions
  • Make sure only people they trust are present
  • Speak to advocacy groups
  • Continue to support the individual
  • Encourage reporting

 

Follow these links for more information:

  1. http://www.slideshare.net/brcenter/abuse-of-people-with-disabilitiesthe-silent-epidemic
  2. http://www.bjs.gov/content/pub/press/capd0913stpr.cfm
  3. http://www.disabilityrightsca.org/legislature/Principles/102801.htm
  4. https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-talks-about
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Like They Know What Love Is

I recently had an encounter with Joel’s principal that left me a little shocked. My mom and I were waiting in the office for Joel’s IEP and the principal saw us and started a conversation. She recognized us and started talking to us about Joel and his girlfriend, we’ll call Princess Peach. Princess Peach and Joel are such a funny couple. She shows more affection and constantly sends home notes, drawings, and gifts for Joel. For the longest Joel would deny their relationship and now most days he says yes when asked if Princess Peach is his girlfriend. They have known each other since elementary school but were separated in middle school only to reunite in high school. It was written in the stars!pexels-photo-326612.jpeg

Many times when other school staff see us they’ll comment to us about this relationship like how funny they are or cute they are. But no one said anything demeaning until our a little bump in to his principal. Here’s the conversation:

P: Y’all here for Joel huh?

Me: Yep, it’s his IEP meeting day.

P: Joel is something else! I see him all the time in the halls with his girlfriend. Y’all knew about Princess Peach right?

Me: Yeah, they are so funny, Joel gotta learn some manners though. He’ll only claim her on good days.

P: Yeah, I see them holding hands, he’ll have his arm around her. This was followed by a laugh and the following statement that ruined the conversation: Like they know what love is!

Me: Just like any other teenager right?

P: Yeah but you know because of who they are:

Me: *stares blankly*

P: Okay, awkward silence, backs away and shifts her glance, then she leaves.

What kind of statement is that? What does their disability have to do with their ability to love. I might agree teens in general may not know what love is but not really because I met my boyfriend 5 years ago in high school and we’ve been together ever since…

Like they know what love is…

ds couple

Like they know what love is…

ds couple 2

Like they know what love is…

ds couple 3

Like they know what love is…

ds couple 1

You can’t tell me that people with cognitive/intellectual/developmental disabilities do not know what love is. It may not look the same but they can certainly love. I found an article on this topic and here’s what stuck out the most to me:

“The capacity for people with developmental disabilities to live full, rich lives is often underestimated,” says The Arc San Francisco CEO Dr. Glenn Motola, “but love is found across the entire spectrum of  the human experience and includes us all, people with disabilities and people without disabilities.” Read the whole story below:

https://blog.sfgate.com/lshumaker/2013/02/07/love-relationships-and-people-with-developmental-disabilities-a-valentine-story/

I found a study on love and people with intellectual disabilities and I think that it is very interesting and worth your time.

“According to the findings of this study, the young adults with ID understand love very concretely. One of the most important findings was how positively they all perceived love and its importance in their lives. Love was considered important and valuable to themselves and to people in general as it was recognized as a crucial element of well-being.” I encourage you to at least read the results and summary of this study using the link below.

https://www.tandfonline.com/doi/full/10.1080/02673843.2016.1167749

People have this misconception that people with disabilities do not love the same or even want the same kind of relationship that people without disabilities have. The truth is many of them want to have relationships and most never learn how to do in a healthy way which can lead to some serious problems. Don’t leave them out o the conversation about these topics.

Happy World Down Syndrome Day

It’s World Down Syndrome DAY!!

I hope everyone is celebrating in some way today. I love seeing the pictures of the crazy socks and heartfelt stories. I am so blessed to be part of the down syndrome community. I know I’ve mentioned a million times how Joel has shaped my life and how proud I am to be his sister, but I can’t say it enough. Joel is everything.

But I wanted to take time and revisit why we still need this day. Why we still need down syndrome awareness. The answer is because there are still people that need to be educated on down syndrome. It is not something to avoid, to fear or to hate. We still have hate crimes, discrimination, insults, memes, derogatory language, and so much hate.

We still see stories like this one:

Kentucky

They neglected and and starved their 20 yr old son with ds to death

http://www.wdrb.com/story/37606012/police-say-down-syndrome-man-in-winchester-had-no-food-in-his-stomach-when-he-was-found-dead

and like these:Police

Police Brutality and Down Syndrome

We need organizations like Save Down Syndrome other organization like the ones listed in here, and people like you to keep promoting and shouting their worth.

We will continue to spread awareness:

  • Until the first response to a down syndrome diagnosis is not “I’m Sorry.”
  • Until students with down syndrome are included with their non-disabled peers.
  • Until people stop using phrases like retarded, mongoloid, downs kid, etc.
  • Until people stop looking for a cure or a miracle.
  • Until abortion isn’t the first the thing a doctor suggests just because the child may be born with down syndrome.

 

With that being said Down syndrome should be celebrated. I love that the world can honor our loved ones today on 3/21. The day signifies the 3rd copy of the 21st chromosome and this is a great way to spread awareness about this disability. I think in my house everyday is down syndrome day. Life is just so good with Joel and I cannot imagine a world without him. He makes me who I am in more ways than I can even fathom. Happy World Down’s Syndrome Day!!

Restroom Wars

We’ve been hearing a lot of debate about who can use which restroom because of the
increased awareness of individuals who are transgender. As with many minority groups, they began to advocate for things they found important, one of the most famous being that of their restroom rights. Their advocacy efforts led to policy change in many stores, public areas, and even laws. But, what does this mean for our loved ones with disabilities who require help in the restroom?

I was reading an article written by a concerned mother in Virginia about how the changes in laws referring to individuals who are transgender using the correct restroom affects her son. Her son is ten years old, has severe autism and needs constant supervision. So, like many other families who have children with disabilities, she has to take her son into the women’s restroom for his safety. The article recounts her family’s experiences at the local pool and how un-accepting some people were about her son.
The following is quote of an interaction she had at her local pool after a woman got angry about there being a boy in the women’s locker room:
Upon our return the next day, I found a sign posted at the desk which read in all capital
letters: “CHILDREN OVER 6 YEARS OLD MUST USE THE LOCKER-ROOM OF THEIR
OWN SEX.” I ripped that sign off the desk and drove straight over to our community
association office and said, “If you don’t inform every lifeguard at every pool in Reston, that this is discrimination against the disabled and a violation of federal law, I will have
a discrimination lawsuit against the association faster than you can say not happening.”
I feel her frustration! There will always be intolerant and rude people, although, I have never experienced this much negativity.
I have experienced glares and whispered comments when I take my brother into the
restroom with me. But I will continuously take my brother into the women’s restroom because I value his safety and his comfort over anyone else’s comfort. Like this mother put it, “If he still requires my supervision at age 35 or 65, that’s where I am taking him. I refuse to put my son in jeopardy for someone else’s comfort.”

We let Joel go in the male public restrooms when we have a trusted male with us who is capable of keeping an eye on Joel while letting him use the toilet/urinal independently. Joel very much feels that he is grown 18 year old who does not need to go to the women’s restroom and will often walk into the men’s room before we can lead him to the women’s restroom with us. We do want him to exert his independence but safety is our number one concern.( I may have read one too many stories of strangers abusing individuals with developmental delays in public restrooms.) Thankfully we often have a trusted male with us to help us out by walking in with Joel and waiting for him. He usually is well behaved and clean in bathrooms, but when he makes a mess he MAKES A MESS and it is not pretty. This happens when he is sick or has held in the urge to use it for too long. And thankfully that has not happened in public restrooms in a while. I am so very thankful to the fellas in our lives who love Joel and do not mind being there for him when societal norms do not allow us to.

There are many fears about letting your little ones go to the restroom on their own, but those fears are multiplied when we’re talking about someone with disabilities. There is a multitude of reason why letting them go to the bathroom is scary, for example:
1. Predators
2. Getting lost/ Wandering
3. Having Accidents
4. Getting their #1 or #2 everywhere but the toilet!
5. Mean People
6. Inappropriate behavior

The list can go on, but you see my point. Why should we risk any of these things when we
know that if we take them into the restroom with us, these things can be avoided. Whether it is the parents, siblings or caretakers of the opposite sex, we need to stand our ground. We will not risk our loved ones’ safety for the comfort of others. The gender issue and restrooms is not just about transgender rights but also but those of our loved ones with disabilities. People who feel uncomfortable about someone who does not look like them lack compassion and a community mindset. These people most likely mean no harm they are just not exposed enough to people who look or act differently from them. Fear of the unknown is a major contributor to the way they feel and think. Hopefully they can open their minds and live with compassion rather than fear. Everyone needs a restroom where they feel comfortable and belong.

pottyTo read the full article mentioned follow this link:
http://www.lgbtqnation.com/2016/04/how-do-the-new-new-bathroom-laws-affect-kids-withspecial-needs/3/

For more on the war of the restrooms follow these links:
http://well.blogs.nytimes.com/2016/05/25/the-other-bathroom-wars/?rref=collection%
2Ftimestopic%2FDisabilities&action=click&contentCollection=health&region=stream&module=stream_unit&version=latest&contentPlacement=9&pgtype=collection&_r=0

IEP Guide

If you’re here chances are you know what an IEP is. Individualized Education Program. In case you don’t know, I work at my state’s Parent Information and Training Center. Find yours here. I work with families daily on IEPs, special education, and all disability related things. If you have never heard of one of these centers, I encourage you to call and ask for help and support if needed. In this post I decided to share some information I give to families all the time on IEPs so bare with me if its boring or too structured. Most of this is taken from presentations I do and the websites listed at the end.

Here we go:

The purpose of an IEP is to set reasonable learning goals for a child, and to state the services that the school district will provide for the child. Each child’s IEP must contain specific information, as listed within IDEA, Individuals with Disabilities Education Act. This is a federal law binding in all states. State law can mandate more protection than IDEA but not less. Each state uses different criteria to determine programs and guidelines for qualifying students for special education.

An IEP meeting must be held within 30 calendar days after it is determined by a full and individual evaluation that the  child has one of the disabilities listed in IDEA and needs special education and related services. A child’s IEP must also be reviewed at least annually thereafter to determine whether the annual goals are being achieved and must be revised as appropriate. The team may meet before the anniversary date to make amendments at any point and it will not replace the annual IEP meeting date.

It is allowed for the IEP team to bring a draft of the IEP but a discussion and explanation of changes still needs to happen. If the IEP team chooses to use a draft IEP, the team must ensure that the parents understand that the document is a draft, and is not set in stone. If the IEP team uses a draft IEP, they should provide a copy of the draft document to the parents well in advance of the IEP meeting. The parents must have enough time to give careful consideration to the recommendations in the draft IEP.

Parental consent is required to provide services defined in the IEP.

IDEA states that, as soon as possible following development of the IEP, special education and related services are made available to the child in accordance with the child’s IEP.  But, it does not give a specific amount of time between finishing development of the IEP and beginning the services described in the IEP. The only exception is if the meeting occurs during a school vacation or when arrangement of services such as transportation are involved.

IDEA also requires that the school system ensure that each regular/special education teacher, related services provider and any other service provider who is responsible for the IEP’s implementation:

  • have access to the IEP;
  • be informed of their specific responsibilities;
  • specific accommodations, modifications, and supports to be provided to the child, in accordance with the IEP

An IEP team member can be excused for all or part of IEP meetings if parents and IEP team agree in writing his/her presence is not necessary and because their expertise is not going to be discussed or modified at the meeting.  IEP can be developed via alternative means to a face-to-face meeting if parents and school agree  like a phone conference.

If parents or the school want to amend or modify the IEP, the team does not have to physically meet.  IEP teams have the option of drafting a written amendment to the IEP, agreeing to the amendment and incorporating this modification into the IEP plan.  However, before the IEP team can use this new alternative to gathering in person specific conditions must be met.

  • This option cannot be used with the IEP meeting that is required at least annually to review and revise the IEP. This option applies only to modifications the team might want to make after the annual IEP meeting has been held in person.
  • Parents and LEA must agree to not meet but to take this approach instead.
  • The amendment or modification to the IEP must be in writing.

Required participants include:

Parents or guardians

Special education teacher

General education teacher

School district representative (ODR) that can commit district resources

Person(s) who can interpret evaluation results

  May include:

Related services providers

Family members

Advocates

Student – required at age 14

Transition services personnel

Key Components of an IEP:

Present Levels of Academic Achievement and Functional Performance  (PLAAFP)

The PLAAFP statement is a key part of your child’s IEP.  The very first PLAAFP for your child describes his skills and abilities based on his initial special education evaluation. The PLAAFP should cover all areas of development where your child may need support. Some examples are:

  • Academic skills like counting, pre-reading, pre-writing
  • Daily living or self-help skills such as dressing, eating, using the bathroom
  • Social skills like playing with friends
  • Behavior
  • Sensory skills such as hearing, seeing
  • Communication skills as like talking, listening
  • Mobility getting around in school and in the community.

The purpose of the PLAAFP is to identify the kinds and amount of special education services your child may need. In other words, you and the rest of the team will talk about the impact your child’s disability has on his ability to learn and do the kinds of things that children without disabilities learn and do. This information is then included in his IEP.

Measurable Annual Goals

Measurable annual goals are statements that describe what a child  current level and  can reasonably be expected to accomplish within a 12-month period in the child’s education program. There should be a direct relationship between the measurable annual goals and the needs identified in the PLAAFP.

Special Education/Related Services

Let’s start with IDEA’s full requirement for specifying a child’s related services in his or her IEP.  Each child’s IEP must contain the following:

A statement of the special education and related services and supplementary aids and services, based on peer-reviewed research to the extent practicable, to be provided to the child, or on behalf of the child, and a statement of the program modifications or supports for school personnel that will be provided to enable the child to the following:

  1. Advance appropriately toward attaining the annual goals;
  2. To be involved in and make progress in the general education curriculum and to participate in extracurricular and other nonacademic activities; and to be educated and participate with other children with disabilities and nondisabled children in the activities

Least Restrictive Environment or (LRE) and Placement Decisions

LRE is part of the Individuals with Disabilities Education Act.  IDEA says that children who receive special education should learn in the least restrictive environment. This means they should spend as much time as possible with peers who do not receive special education this includes extra extracurricular activities.  IDEA says two things about LRE that are important to understand when working with the IEP team:

  1. Your child should be with kids in general education to the “maximum extent that is appropriate.”
  2. Special classes, separate schools or removal from the general education class should only happen when your child’s learning or attention issue of his “disability” under IDEA is so severe that supplementary aids and services can’t provide him with an appropriate education.

While in the regular class accommodations and/or modifications are use in the regular curriculum. When modifications are made, kids with disabilities are not expected to master the same academic content as others in the classroom. With accommodations adjustments students have equal access to curriculum in a successful way. (I’ll go into more detail about the differences between the two in another post) 

If child is moved to a self contained class it is only decided  if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. An IEP must happen to make changes in placement.

Time Frame of IEP

  • Initiated as soon as written, unless written during school vacation/summer or when short delay required for services to be provided
  • Transfer students served within 1 week of  transfer
  • Must be in place before student placed in special education

Transition

IDEA requires a transition plan when a student has a disability. Transition services are intended to prepare students to move from the world of school to the world of adulthood beginning during high. Transition planning takes place as part of developing the student’s Individualized Education Program at the age of 14 or younger if determined appropriate by the IEP Team.  The student must be invited to any IEP meeting where post-secondary goals and transition services needed to reach those goals will be considered. (Every student regardless of disability can participate in their own IEP in some way, and at any age although they should be invited by 14. Participation can look different for each student. I’ll make a post just on this soon.)

This plan is to help students prepare for life after school, focus on post-secondary education, training, employment, & independent living. As you can see the areas to explore by the IEP team to determine what types of transition-related support and services the  student with a disability will need. It’s easy to see how planning ahead in each of these areas, and developing goal statements and corresponding services for the student can greatly assist that student in preparing for life after high school.

Progress Toward Annual Goals

Another component of the IEP that IDEA requires is specifying how the child’s progress will be measured. This statement flows naturally out of the annual goals written for the child which must be measurable. Schools have to report to you with a IEP Progress  Report periodically. This gives parents, and other members of the IEP team the opportunity to review the IEP and make adjustments if they are warranted. When a child does not make the progress expected, then it’s essential to determine why and take corrective action.

Expect IEP progress report four times a year when report cards are given out to all students. If you don’t  get one ask for it, it is your right!

Special Considerations

  • Language needs for students and parents with limited English proficiency
  • Behavior intervention plan for students with behavior challenges
  • Braille instruction/use of Braille for students and parents with visual impairments, unless deemed inappropriate
  • Communication and language needs for students with hearing impairments
  • Need for assistive technology devices/services

Quick overview of Substantive Requirements: 

  • Parents must be equal partners; however, they do not have absolute veto
  • IEP must be reviewed annually or sooner if progress is lacking
  • All teachers involved in implementing IEP must have access to it; must be implemented as written and
  • Districts are still responsible for IEPs of students placed in private school

Prior Written Notice

Prior Written Notice should be given to parents and all IEP participants in their preferred language even if their language is not a written language. Also it should be given within a reasonable time before the school or local education agency proposes or refuses:

  1. to initiate or change the identification, evaluation, or educational placement including graduation with a standard or advanced diploma of the child or
  2. the provision of a free appropriate public education FAPE for the child.

Federal and/or state special education laws and regulations do not define what would be deemed as a reasonable time. However parents can stay a step ahead by highlighting their child’s anniversary date for both the triennial evaluation and annual review meeting dates as listed on the IEP.  This is key as oftentimes, the anniversary date may cover an extended school holiday.

Signing

There is no regulation that says you must sign the IEP immediately at the end of the meeting, or at all. If you feel the need to wait before signing the IEP, if you need to “sleep on it” or share it with your spouse/child’s tutor/consultant, say so. You may wish to list specific items in the IEP that you want to think about before signing (“I’m still uncomfortable with ____, and I’d like to think about it some more”). This lets the school know where you stand and gives everyone time to think of possible solutions or compromises.

Whatever you decide, read the IEP document in its final version before signing. This is also a good time to review the list of concerns you prepared before the IEP meeting. Did the team talk about all of those items? When all the talking is done, if you are comfortable with the IEP, go ahead and sign. If you agree with everything except one item, you can sign your agreement and add a statement about the one item you disagree with. The team can implement all of the IEP except that one item, until you do resolve it.

Final Tips

  • Make an agenda of your main concerns will help keep you on track and everyone else. Make one for yourself with all of the notes of concerns to discuss so you don’t forget to mention something important during the meeting.
  • Writing down any questions, concerns and ideas beforehand will ensure you’re following the agenda.
  • Arriving early to the meeting shows that you’re prepared and ready.
  • Start the meeting with an expression of appreciation setting positive ground rules.
  • Focus on the issue your child’s NEEDS not personalities
  • Always remember that with the end in mind “the beginning impacts the end”.
  • Stay focused on the student throughout the process.
  • Focus on interests the What not positions the Why which is key in conflict resolution
  • Communicate clearly and listen carefully
  • Respect the views of others even if you don’t agree
  • Share your views willingly
  • Ask and welcome questions
  • Be open to ideas and views presented
  • Honor time limits and stay on task

As the parent of a child with disabilities, you are a valuable member of your child’s Individualized Education Program (IEP) team. You have knowledge about your child from which school personnel and other IEP team members will benefit. Likewise, they have information and professional perspectives that will help you understand your child’s educational program. The following questions can help you gather information from others and be an effective member of the IEP team.

  • Could you please share the data to support ___?
  • What time of day does ___ usually happen?
  • You say the policy is _____. May I please have a copy of that policy to read?
  • I think I heard you say_____. Is that correct?
  • Would you please rephrase that so I’m sure I understand?

Resources:

Getting Ready for Child’s IEP

Parent Center Hub IEP Progress

Wrightslaw: IEP Draft

IEP Goal Tracker

Understanding IEP Law

Anatomy of an IEP

 

 

 

Joel’s Birthday Revelations

Joel’s 18th birthday was this weekend, he’s officially an adult!  Our boy is so grown and he never ceases to amaze me and make my heart melt.

This was very big birthday for us. We celebrated his golden birthday on Sunday, 18 on the 18th. 18. EEEE! He’s reached adulthood. But what does that mean for someone with a cognitive disability? I know I wrote about guardianship before but I’ll go into more details about his transition into adulthood later on, I promise.

This birthday was special. It was also the first time he celebrated with his own friends. Joel’s friendship circle has always just been family, my friends and family friends. But this year he branched out and has met a lot of people just like him and he invited some to his party at his most favorite place on Earth, Laser Tag.

Joel34

Anways, about two weeks prior to his birthday, we got the letter from SSI about his eligibility since he’ll be turning 18. We’d been expecting it and as always I helped my parents prepare for their meeting and filled out all the paperwork. This lead to me going through Joel’s old paperwork and documents from his diagnosis and doctor appointments, and old IEPs.

I learned a lot. I didn’t really get involved in Joel’s appointments and such until he was in high school so there was a lot about his life before that, that I didn’t really know. I only knew what my parents told me and from more recent documents.

One of the documents I was looking for was Joel’s original diagnosis. My mom always told me that they told her right away that Joel was born with down syndrome and that’s probably true and I never did find the original diagnosis. What I found instead was a doctor doing another evaluation of him at 3 months old and writing his assessments to the original doctor who diagnosed him along with a referral to the Down Syndrome Clinic at Children’s Hospital. It turns out Joel got his formal diagnosis at 4 days old. The assessment stated that Joel does indeed have Down syndrome, trisomy 21 and as a result is mentally retarded and may have other significant health conditions that can present itself later on.  I understand the use of the word retarded here as it was nearly 20 years ago and it was used medically, but I still felt uneasy reading it especially in light of recent events. Luckily the medical field has replaced that phrase with intellectual disability. (In case you don’t know why, it’s because the term retarded has lost it meaning because people use it wrong and it has become a hurtful and demeaning word.)

The referral that came with this document had me asking my parents a lot of questions. Mostly, “did you know what that said?” Sadly my parents did not have someone to help them understand everything and missed a lot of important things. They hadn’t realized that they missed things because they didn’t understand what was sent home and no one translated it for them. My mom of course blamed my dad (because he supposedly knows more English) but in his defense being able to get by in life with English is different than actually knowing English. English is a hard language to learn especially if you looking at  medical documents. The point is that Joel missed appointments and interventions that could’ve really helped him. It’s useless to put the blame on anyone. It was years ago and Joel is still perfect anyway!

Luckily they met a doctor later on who my mom babysat for who help her get other supports and early intervention. I wish I was older then, so I could’ve helped them.

Looking through his IEPs was a whole another ordeal too. Some teacher wrote offensive things and my parents had no idea. Those IEPs were passed down and no one ever told my  parents anything. I remember one phrase that stuck with me that was written. Joel was 8 years old when he was finally fully potty trained. At home he was using the restroom on his own better but at school he had a lot of trouble. And I know that teachers have a lot to do and cleaning up accidents is something no one really wants to do, but they had the responsibility to do it. Or ya know… get a para for him. But um, the IEP said, ” Joel does not mind sitting in his own void, and does not want to use the toilet.” I read that phrase to my mom and she got mad. She said she remembers how much of a hard time the school gave her about his restroom needs and how she would constantly get called to go there and change him. I remember once she sent him to school with extra clothes and pull-ups and they made her come back to school and they gave them to her saying they would not change him. I’m sure they were convinced that he wasn’t being potty trained and home which he was! He just had a harder time at school.

I remember when he was born and I was not allowed to see him for a few days. I don’t know why. I remember my mom stayed at the hospital a while as did Joel and my aunts and dad took turns caring for my sister and I. One day, my dad got my sister and I all dressed up and we finally got to see Joel. He was perfect. I remember bragging o everyone at school about him. I had no idea he had down syndrome and I didn’t know for a while.

But I know I told you all about one of my family member’s thought: Religion in my Family and Disability But I just wanted to reiterate how much it sickens me that not everyone was so accepting of Joel. Joel having down syndrome is not a punishment! My dad constantly says that Joel was the reason he changed. (He used to be an alcoholic.) He was a gift and continues to be so!

 

Ableism Kills

In case you don’t know what ableism is, it’s discrimination against people with disabilities. Whether it is intentional or not. It can look like typical discrimination expression  like hate for people with disabilities and rejection of disabled applicants for housing and jobs. Or it can look more complicated like the denial of accessibility, institutionalized discrimination in the form of benefits systems designed to keep people with disabilities in poverty, etc.

Take this video for example, ablesim due to the denial of accessibility:

Ableism can also be the belief that people with disabilities need to be fixed or healed, and cannot fully function as members of our society. These assumptions make some members our society view people with disabilities as being abnormal and part of a distant other instead of minorities within our same society.  I realize that abelism can be deliberate or accidental but that still does not make it okay.  I found this twitter post when I was researching this topic and I think it perfectly explains ableism.

Ableism

Not too long ago a man in Japan acted on his ableist ideology and committed Japan’s worst mass murder. A man who claimed he wanted to kill disabled people left at least 19 dead and 26 others injured after a knife attack at a care facility in Japan. A mercy killing.

 It was the country’s worst mass killing in decades. “I did it,” the 26-year-old former employee of the facility was quoted as saying. “It is better that disabled people disappear,” he was said to have added. He was carrying a bag full of knives and other sharp-edged tools, some of which were bloodstained, when he handed himself in. Nine women and 10 men were killed. They ranged in age from 18 to 70.

He tied up staff members and asked them where people with severe impairments were accommodated in the facility, investigative sources said. Shortly after his arrest, Uematsu allegedly told police that he wanted to “save” those with multiple disabilities and felt “no remorse” for what he did. He reportedly told others before the rampage that “disabled people create misfortune” and that he “wanted to euthanize them.”

Masayuki Okahara, professor of sociology at Keio University, said, “I cannot accept the defendant’s claims. But against the background of the case may be society’s intolerance toward its most vulnerable members. “There is a general sense that we should not discuss the incident. Society has accepted disabled people only in the context of heartwarming stories,” he said.

“But we should first understand the reality of seriously impaired people. We should create an environment in which such people and their families can feel acceptance and freely go out in society.”  Japan Times

If you can, read this blog post: “I don’t see myself without my disability” It’s a good read about acceptance of disability. The closes the post with this:  “When we dream about a better more inclusive reality, we shouldn’t show the status quo and suggest that people who don’t usually fit in should have that too. We should show a world where they actually do.”

We should be providing supports and encouragement to people with disabilities to help them live the life they want. We should not push them and their dreams aside or try to erase their disability.

Abelism kills. It kills dreams, opportunities, acceptance and many times it can literally kill people.

I’m Sorry

This picture was taken in Leakey, Texas this past Thanksgiving. Joel struggled so hard to get up there and I think I’ve mentioned this before but he really has some balance issues. We all had to push him up because he was determined to get there. I love my boy! Any who….

Some times, people think the appropriate response when I tell them my brother has down syndrome is, “Oh, I’m sorry.”

Why?

I remember one of the first times that happened to me and I responded in a civil way and said that it was completely okay, there’s nothing to be sorry about. And this person said, “No, no. We don’t need to talk about it.”  Alright… Whatever man.

So let me tell you about my boyfriend, Huy. He met Joel right away back when we were in high school and we did a lot of volunteering with Key Club. I would always bring my brother along to events and everyone knew him. So Huy knew when we started dating that Joel had Down syndrome and he never really talked about it, but he always played with him and treated him great. So when he told his sister about us and about Joel, they were very sympathetic about Joel. Because ya know.. apparently it is a very sad thing to have a family member with Down syndrome. They asked him how long Joel has to live. Huy did not tell me about this conversation until months later. He was scared to bring it up or something because he did not realize that people with Down syndrome have a lower life expectancy. (They don’t anymore, he just thought that because what his sisters said) I can’t remember how he finally told me about the conversation but by that time he was not as ignorant about Down syndrome anymore and he told me the story as in a, “can you believe it” kinda way. I think I got a little offended at first but I can’t be mad that they didn’t know. But it was also funny to me because I knew he knew better at the time he told me. I’m glad he is not ignorant about it anymore, his relationship with Joel makes me one happy camper.

DISCLAIMER: His family is great and they have never said anything rude or inappropriate about Joel. They are loving and so nice to us. Often times I’m very jealous that I don’t see them as much. Y’all have no idea how much I like his family. So just know I’m not trying to make them look bad, I’m just sharing my life as always. 

My most recent encounter with the response of I’m sorry was at a restaurant. At the table was my sister, me, Joel, and our friend. So we all look ethnic and different from each other so the hostess for some reason wanted to guess all of our ethnicities. (in her defense, she was also Hispanic, and Hispanics always try to guess what country everyone is from.) Weird from the start. When she got to Joel she said, “Umm, I don’t know, you’re confusing. Maybe Asian.” All I said was, “No he has Down syndrome.” She got very awkward and said she so sorry and she did not come back to our table I believe, if she did I probably would have ignored her honestly. I remember being really mad about the hostess. I was really negative about it and rude. Which is probably not the best way to handle a situation like like. It was just weird thing for her to do in the first place.

People with Down syndrome aren’t sick and they do not have diseases. They can most definitely without life their parents nowadays. In past things were different and their life expectancy was in the 30’s I believe but most people believe it is because for the most part they were put in institutions and weren’t cared for as much, therefore prone to more sicknesses and what not. Luckily this is no longer the case. Although there are exceptions, like those who have other ailments along with Down syndrome. But Down syndrome alone is not a cause of death. DS Facts

A lot of people aren’t exposed to disabilities and therefore do not know how to react or what to say. I get it. It’s okay, we can use these types of situations as a learning experience. I guess some people are sorry because they think caring for someone with a disability is hard. Which sometimes it is. But I’m not sorry about my life, Joel isn’t sorry about his life and I know lots of families who aren’t sorry about their lives.

 

Wisdom Tooth

Joel had a wisdom tooth removed today and he was a mess all morning. He is usually so well behaved and cooperative with doctors. He actually loves going to the doctor, when he gets a minor cut or the slightest ache of any kind he will over react and ask for the doctor. Every time we drive by a hospital he points to and says, “Doctor!” and pretend like something hurts.

Today was a little different. He was nervous from the start and barely interacted with anyone. He was quiet the whole ride to the orthodontist and only asked once where we were going.  His eyes were wide as he just stared out the window the whole time. Although, he was acting cool in the waiting room, by “reading” through magazines and sniffing cologne samples. When they called his name he quickly got up and held his head up so high he couldn’t even see where he was going.

Once they sat him down in the chair, he immediately looked petrified. He stared blindly at the wall and would not move a muscle while the assistant was getting him connected to the machines and what not. A couple of times she had to physically lift his back or arm because he just wasn’t budging. My mom and I tried to smile at him and interact with him but this was met with very aggressive grunts and balled fists. On of the nurses who saw him a while back came int o try and cheer him up by mentioning the Saints and Drew Brees but Joel avoided eye contact at all costs and didn’t even make a sound. Props to her for trying though!

Once the doctor came in he began to search for his veins. This took a while.  So a little back story with this:

Joel was supposed to get his wisdom tooth removed in October but that didn’t happen. At the time he was seen by a different doctor at the same practice. I was unable to go his initial appointment back then but that doctor told my parent Joel need to get the procedure done at Children’s hospital but before he could schedule anything, he needed to get clearance from his cardiologist. Days went by and we heard nothing, and I assumed that they would call us. I can’t remember exactly why I was waiting for a call from the cardiologist but I remember they were supposed to call me the following Monday. I waited Monday and I expressed my aggravation with my dad right before I was about to call and he said, “wait, cardiologist? for Joel?” Turns out, they called him right away after they spoke to me to give us the clearance and he completely forgot to tell me. I always tell the doctors’ offices we go to for Joel to call me first because something like this happens, or they misinterpret something. Most places claim they have translating services but a lot of times they do not. So anyway, I call the orthodontist office and I have the clearance faxed over and they said they’d have the doctor look it over and then they’ll call us back to schedule the procedure. Before I knew it like two weeks had past by and we had heard nothing. Granted, I should’ve been on top of it but work was very busy during the last months of 2017 and the holidays were here and Joel had a full schedule of extra curricular activities.  I know, excuses, excuses… Well by the time I called the orthodontist office, it was I wanna say the first week of December. AND! It turns out the doctor who first saw him had left the practice and was left all the patients in limbo. I was able to schedule another appointment with a different doctor for early January but they basically had to start over. This time I was able to go with my mom and Joel for the “first” appointment. everyone was super nice and apologetic. The nurse and Joel instantly hit it off and Joel was bragging about meeting Drew Brees and showing pictures. Complete opposite from this today. They schedule his wisdom tooth removal quickly by squeezing him in early in the morning for two week later and said they were going tot he procedure at their practice. I asked if they longer wanted to go to Children’s. This doctor immediately protested and asked if the other doctor told us that. He said that the only reason they go there is for children medical complications. Down Syndrome itself, is not a medical complication. (PREACH!) he asked if there was any reason why we thought they should go to Children’s. I mentioned that Joel is notorious for hiding his veins. It usually takes a long time and sometimes multiple tries. But we were okay staying at the practice if they could handle the veins. They did a test run and the nurses couldn’t find it but the doctor ended up finding it after a few minutes. We agreed that the doctor would handle his I.V although he did say it would be harder to find his vein on the day off because he would have to do it on a fast. But we trusted him so that’s that.

So anyways, without exaggerating, it took about 10 minutes for the doctor to find his vein for the I.V. At this point Joel was starting to get very trembly. He knew what was coming, that part was familiar to him. The assistant was so great with him. she held his hand and rubbed his shouldered to comfort him. But when the doctor sprayed that cold numbing thing, Joel started to loose it and started shaking really hard and crying.  I immediately thought that the doctor wouldn’t be able to insert the I.V since he was moving so much, but he did it so quickly and successfully. They all comforted Joel and told him how great he was doing. At this point we had to go to the waiting room while they did the actual procedure.

They were done in about 15 minutes and called us in once he had woken up. He looked so sad and confused when we got there. He was very quiet and a little out of it as expected. We stopped at Walgreens to pick up his meds and he wanted to go too. ( He thinks he’s sneaky but we knew why.) He picked out a toy to take home and his mood changed immediately. When we gt back into the car he asking for McDonald’s and pizza. We had to break it to him that he won’t be able to eat that for a week but he seemed cool about it. He usually gets so mad when he is denied food.

We got home, fed him some soup, gave him his meds, put on his favorite movie (Nacho Libre) and he played with his new toy.  He seems to be a happy camper for now.

In Case You Need Some Encouragement

Raising a child with special needs is hard work. I know I’m not a momma I do get tired, worn out, and worry about his future.

Those late nights where Joel cries because he had a nightmare or isn’t feeling well. (our rooms are right next to each other and I am usually the only one that can hear him, plus I’m a light sleeper) Other times he walks into my room to ask for help, medicine, or for cuddles.

Or those other late nights where he won’t go to sleep and is talking and laughing with himself until 2 am. (Joel can’t really speak but you can tell he’s have a crazy conversation with himself, he changes tones, whispers then yells, I don’t know how to explain… I might insert a video here at some point.) Sometimes, he’s annoying and other times he’s too darn cute to yell at. He’ll creep into my room with Jenga or UNO and say “Play?” in the cutest possible way. So hard to tell him that I’m tired and want to sleep.

Those days when he won’t leave me alone and even when I go to the restroom and he constantly knocks asking me where are you. When he’s sick or bored, he can be so clingy.

Then there are really bad days where he’s violent and mean. Those are really tough. I’ll write more on this later on.

Joel’s Health is huge concern too It can be hard and tiring dealing with all of his medical appointments and treatments. He usually cooperates so well with this because he loves going to the doctor. The only thing that is so hard for us is managing what he eats. The boy won’t listen and fights.

Not to mention school. IEP meetings, phone calls, paper work, lack of supports, and what happens after high school? So many worries, uncertainties, and questions. You can read about it in our homepage.

I’ve been going to to school meetings and doctors visits forever with him since my parents’ language barrier. It all piles up and can leave you drained. Not only do I deal all of this “special needs” stuff at home but I work in the field as well and help families through all kinds of situations whether it be at home, school, work, or community. There is so much that goes one and so much to worry about. It can be so hard to keep up especially in a state like ours where funding is so limited. Sometimes work makes me so sad because of certain situations families are going through.

So if you need some encouragement remember:

  • You are not alone
  • You don’t have to fill a certain expectation of what you or your child is supposed to do or accomplish
  • You are enough, even when you feel like you aren’t
  • You don’t have to do everything, ask for help
  • You are perfect, even when you’re not perfect
  • Be forgiving of yourself
  • You deserve to be cared for

One of the first conferences I went to when I started this job was Team Up For Families. A lot of it was about self care for parents and caregivers and how important it was not to burn out. Our last exercise was to write ourselves a letter and send it to ourselves with a list of selfish things to do for ourselves. Soooo… you should do that too. You don’t have to go through the actually process of mailing it out but maybe just create a list of things you want to do for yourself, share it with a friend who will make sure that you actually do them.

Here are some links to give you some encouragement as well:

I always feel weird talking about this to parents because I am not a parent, but here it is!