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Summer Adventures

First off… HAPPY 4th of JULY!!

Joel has had quite a busy summer. Starting with his graduation, prom, parties… Joel has been having a great time. Earlier last month he went on his annual trip to Lion’s Camp! Sadly I do not have pictures of his trip because he goes off on his own. We used to pack him a disposable camera but all the pictures would come out bad or the camera wouldn’t even be used. Its a whole week of fun and no parents, Joel always comes back so happy. When I ask him what he did, all he tells me is a list of the food he’s eaten. He’s like; “uh chicken, pizza, uh hot dogs.” As soon as comes home, he unpacks and shows all his goodies and crafts. The week is so fun for him but we miss him terribly at home.

After this trip, he had one day to rest and then we were off to our first family trip to the motherland (El Salvador)  in 20 years. This was Joel’s first time out of the country.  He gets excited and nervous flying and is too self-conscious to make noise. An example of this is that even though he has earphones on, he’ll the volume on his IPad really low and looks around a lot to make sure he is not bothering anyone. He packed his UNO cards and his memory card game but he didn’t want to play with anything. He barely even wanted to play with his IPad. He was more nervous than he has previously been on plane rides. But he was more himself after the food came.

Overall the trip was good but Joel had his moments. He constantly asked for my dad who did not go on the trip with us. He asked to call him a lot and got made very easily. Joel does this thing a lot where he sort of fitches and shakes his head and it almost looks uncontrollable or like he just does it out of instinct whenever he is uncomfortable and annoyed at something. Well on the trip he did it wayyyyy more often and waaayyyyyy more aggressively. A lot of the times when he did it, it was like he did i out of nowhere. Usually, when he does this at home, we can tell its because someone stared at him or someone did something he doesn’t like or whatever. But on the trip, it constantly happend out of the blue. Everyone’s theory is because he was hot and too many bugs. Well, we live in Louisiana where there are bugs all the time and it is so hot here too. Although almost no one has AC in El Salvador, which could have contributed to his annoyance, I think he just wanted to be home.

While on the trip Joel met our cousin, Jose, who also has down syndrome. My mom has been wanting these to meet forever and she finally got her to wish. Jose is 27 and so funny. Well, Joel is too. They both have very limited communication and are super adorable. Although I think Jose is nicer, who knows how he’d act if I actually led with him. haha… Everyone thinks Joel is nice but when you live with him or spend a lot of time with him you’ll see his mean and aggressive side.

Overall it was a great trip and Joel had fun. Let’s see what the rest of his summer holds.

 

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Self-Advocacy & Self-Determination

We are constantly told that our loved ones with disabilities need to have self-determination and self-advocacy skills. But what does that really mean?
Self-determination and self–advocacy are skills that go hand in hand but at times the line of distinction can get blurry. Both share a similar interest: independence!

Self-Advocacy:

Self-advocacy is an important skill that your loved one with a disability can obtain.
Without it, they can often be overlooked, used, or even abused. But what is it? Self-advocacy is the ability to speak up for yourself, knowing your rights, wants and needs, identifying your personal goals and the steps to get there, and being able to communicate them. Not everyone can accomplish all of what is listed but ideally, they can self-advocate in some kind of compacity.

In Joel’s case, his self-advocacy mostly consists of identifying wants and needs. He faces barriers with speaking up for himself becuase not everyone can understand him and he hasn’t learned about rights and all that. I’m not saying he never will, but he just hasn’t gotten there yet. It’s a process and we will continue to teach him and work with him. For as long as he needs us, Joel will always have someone to help him be a self-advocate. And for when he can’t, we’ll always be there to advocate for him.

Here are a few things that I have learned about successful advocacy:

  • Know and understand what you are advocating for. (Do
    researches, present the facts, and be prepared to answer the tough
    questions!)
  • Know that you are not alone in this world of advocacy.
  • Form relationships
  • Share your personal story. Be vocal, but be respectful.
  • Pick your battles, don’t get involved with everything. “Burnout”
    is a serious thing.
  • It is okay to hear the word no. It’s okay to agree to disagree.
  • Be persistent and willing to compromise, when necessary.
  • Strength in numbers! The more people you have advocating
    alongside you, the better!

Whatever cause you’re most passionate about, let your voice be heard. You’re not only making a difference for yourself, but also those around you.

“Be bold enough to use your voice,
Brave enough to listen to your heart,
and strong enough to live the life
you’ve always imagined!”

Self-Determination:

Self-determination is the process by which a person can control their own life. It’s a little different than self-advocacy. This would include being able to go to the doctor on their own, going grocery shopping, or living independently. This skill is equally important as self-advocacy. For some, this is easier than self-advocacy but for others like Joel, this one is more difficult. The both are attainable, but it takes time and patience.

Developing these skills helps lead individuals with disabilities onto the road of independence. It is our duty to help them develop these skills in any way possible. We can do this by encouraging them to do their own grocery list or by letting them speak at their own appointments. Another great way to practice this would be through role play at home. It can be a slow process but it is worth it in order to have our loved ones
meet their full potential.

For Joel, we let him do grocery lists sometimes but what he really likes is to take control of the shopping cart and deciding what goes in and what requires us to beg him to let us put in the cart! We also let him pay for his own things at times, which can be difficult but he doesn’t really understand the value of money but we are working on it. We try to let him communicate his pain or what have you at doctor appointments but he typically just stares at the floor and stays silent. It is a very slow process but were are ready to teach him and help him for as long as he needs it.

There are many agencies that should be available to you in your community that are supposed to help your loved one with a disability achieve this. Check our resources page to find some. I know each state has at least one parent training center that should help you locate these services closest to you. You may be looking for human services districts, office for citizens with disabilities, rehabilitation services and more.

I hope you find this helpful!
For tips and information on Self-Advocacy visit:
http://www.parentcenterhub.org/repository/priority-selfadvocacy/#youth
For tips and information on Self-Determination visit:
http://www.pacer.org/transition/learning-center/independent-community-living/selfdetermination.asp

Graduation?

If you follow us on social media, then you probably know Joel attended his first regular high school prom and he attended his graduation! Woo-hoo!

Prom:

Joel is an amazing dancer and loves going to shindings, but we have never let him venture out on his own. He’s gone to special needs proms and dances but my sister and I have always gone with him. I know… I know… special needs proms? What about inclusiveness?!?! Look, I’m all for inclusion, I really am but I’m also for Joel having a good time. Joel loves going to special needs proms and I won’t stop him from going for the sake of inclusion. With that said, he technically wasn’t on his own because his teacher accompanied him with a few of his classmates but nonetheless, he was free to do what he wanted. Which can be scary. What if does something inappropriate? What if someone does something inappropriate to him? What is he gets lost? What if the other kids are mean?

But it turned out great. Our family gets nervous about letting go off on his own especially because he’s considered non-verbal so he can’t tell us if something happened. He’s also very friendly and can easily be persuaded do something he shouldn’t. He does things on his own here and there and finally, Joel got to experience his first real prom. He even made our local news:

Graduation:

Joel is 18 and this was his senior year, but he can and will go back to high school for at most another four years. WHAT?!?! How??! Let me explain; so Joel is not on a diploma track. This means when he walked across stage he got what is called is a certificate of attendance. He can stay until he’s 22. Some people ask why, why doesn’t he just leave after his actual senior year like everyone else. Well, because simply put, we don’t have the money to provide him with the services and resources he is entitled to while still in the public school setting. There are some vocational programs we’d like to get him into as well but it’s expensive.

As I’ve mentioned before, Joel is on a waiting list for a waiver that would be able to provide those services to him but the waiting list is about 14 years long. Although Louisiana has changed it to need-based, one still needs a score of a 4 or 3 to get services now otherwise your back on the waiting list. Joel was given a score of 1.  4 = critical, 1= planning (he doesn’t need anything right now apparently – *insert eye roll here*.) This is a whole nother story; I’ll get into this in more detail in another post.  (Side note: this is why we have our shop)

So did Joel really graduate? I guess not, but he walked across the stage and loved it. We decided to let him walk across the stage this year because this would be his exiting year if he were a typical student. Ya know, why not complete the senior year experience for him now with the schoolmates he’s been with forever.

BEHOLD:

You can tell he was a little nervous before the ceremony but look at his sweet smile afterward.

Joel has always wanted a waterslide for his birthday, but his birthday is too cold. So after his graduation, we decided to throw him a water slide party.

Morgan’s Wonderland

We visited Morgan’s Wonderland two weekends ago. In case you don’t, Morgan’s Wonderland is the only fully inclusive theme park in the world. Sadly, their water park was closed still… huge bummer.

I was very impressed with all of the wheelchair accessible swings and rides. But in my opinion, I think they need more rides , but then again who I am I to make such a suggestion.

Joel had a great time. He loved the swings with the back support cus lord knows this has no balance. I think his favorite was the Ferris Wheel but he also really liked the jeep ride and the sensory village. He was a happy camper.

My favorite part of the whole experience was seeing people of ALL ABILITIES employed here. People with limited mobility, down syndrome, and more. I was in awe, my little heart couldn’t all the inclusiveness. We live in a world the is exclusive and most people don’t even notice. Most people who do not know and love someone with a disability, don’t notice the world isn’t built for them. People don’t regularly give them job opportunities, there are so many place that are wheelchair accessible, and the list goes on. I’m so glad that a place like Morgan’s Wonderland exists.

This video is a tiny little piece of their play, “As You Like It”. The play was made up of people with and without disabilities. INCLUSION like I’ve never seen. It was so beautiful <3

If you find yourself in the San Antonio area, go find this place. You won’t regret it!

Death by Cop

Ethan Saylor. He was a 26 year-old who had down syndrome. He died five years ago while in police custody. I know I’ve written about it before but I wanted to revisit Ethan’s case.

Ethan loved the movie Zero Dark Thirty. He loved it so much that while his caretaker when to get the car after they watched it, he snuck back in without paying. The manager of the theater called the police on him. They did not know how to handle a situation with a person with an intellectual disability. They killed him and no one can convince me otherwise.

Ethan loved law enforcement to the point he would call 911 for simple questions. His mother even sent them cookies as a thank you for all of the unnecessary trips they made to her house because of Ethan. How did he end up dead at the hands of police officers?

They were warned:

by his caretaker of how he would react if touched. All they had to do is wait, inform the mom, and I don’t know… not kill him. They did not listen. They simply did not have the training or knowledge to deal with someone with an intellectual disabilities. Its like they had never encountered someone with down syndrome. Yes, he kicked and cursed but he did not understand what was happening!

I think that sometimes people like me that is surrounded by people with disabilities all the time, we forget there is a whole world out there isn’t. The majority of people do not interact with people with disabilities at all and do not even recognize it when they see it. So scary.

They were not in uniform:

He did not recognize them as law enforcement because they were not in uniform. How many times do we sit there and warn our loved ones with disabilities  not to trust strangers. Ethan, in his eyes was literally approached by strangers trying to convince him to leave with them.

I don’t know about y’all but that is literally what I am always telling Joel. Do not follow strangers, don’t do what they tell you too, ya know so on and so on. Joel also recognizes police in uniform. He loves them and always daps them off and greets them. I honestly do not think he would recognize people out of uniform as police even if they tell him they are.  Joel is usually very obedient to strangers and I do not if that’s good or bad anymore.

Anyway I bring up Ethan’s story again because after five years, they have finally reached a settlement of $1.9 million.  The officers were cleared of any wrongdoing. The jury determined that no charges were warranted. As part of the settlement, the state and police deny any liability.

“There’s a cliche that you can’t assign a dollar amount to a human being’s life, but that is our system, that’s the only remedy we have for justice in our system,” Saylor’s mother, Patti Saylor, said Tuesday. “We’re not comforted by the money as much as knowing we gave our son everything we could, that we stood up for him until we exhausted all avenues for standing up for him. Because his life mattered. What happened to him should not have happened.”

I am disgusted. Not by the parents, they did all they could. I am disgusted by the system, by the jury, by the deputies, and by some of the ugliest comments I’ve seen. His parents are heroes. They fought for him until they couldn’t fight anymore. As a result, Maryland (the state this happened) has changed the way they train law enforcement and now teaches how best to interact with people with intellectual disabilities. There is also now a program that was created in Ethan’s memory that teaches people with intellectual disabilities to educate law enforcement during their training.  This is what saving down syndrome looks like.

Patti Saylor said after four years of fighting for her son in court, the settlement comes with “mixed emotions.” But, she said, she and Ethan’s father, Ron, agreed the time was right for them to accept it and“focus on healing.”

“It’s been four years of gut-wrenching reports and judges’ opinions and depositions and defending my son’s right to be seen as human, to be seen as valuable,” she said. “I’m relieved that it’s over. I’m tired. But I really feel like as a mom, I did what I needed to do to do right by my son and see this to the very end.”

I hate this story and so many others. But it serves as a reminder of why down syndrome (and basically every other disability) needs to be saved. The world isn’t always a safe place for our loved ones. We need to remember that and do our part. Read Police Brutality and Down Syndrome, a post I wrote a few months ago that speaks more on this.

 

Here is the article where most of this information was taken from:

https://www.washingtonpost.com/local/settlement-reached-in-police-custody-death-of-man-with-down-syndrome/2018/04/24/7d53c0ca-47fe-11e8-827e-190efaf1f1ee_story.html?noredirect=on&utm_term=.e4bd11745520

Sheltered Workshops

I’m not sure how familiar everyone is on sheltered workshops. Simply put, sheltered workshops are a supervised workplace for adults with intellectual disabilities, where the are trained and employed separately from everyone else. People who work in sheltered workshops are typically paid well below minimum wage.

The disability community seemed to be divided on whether sheltered workshops should all close down and then there are those who believe in sheltered workshops and would hate to see them closed down. I am not 100% sure where I stand.  Here’s why:

According to some people, if sheltered workshops close down, many people with disabilities will have no where to go. They may end up up at home or in a some kind of day program. (Which isn’t necessarily bad) Daphne Pickert, who runs a disability service provider in New York, says that ending them removes an option for people who may never be ready for an outside job. She went on to say, “For some people, because of their actual diagnosis and disability, they need the support of the workshop,” she says, “And they literally cannot perform in a competitive setting.”

So I get that it gives them something to do. They have a place to go and I’m sure there  are good number of them enjoy what they do at the sheltered workshop. But are they being exploited? A lot of people think so and are fighting to close down all sheltered workshops. Many states have been moving towards shutting them down. There are fewer and fewer sheltered workshops around. So where do these people go once their sheltered workshop closes down? The idea is that they’ll go through a supported employment program and eventually get a competitive employment. As mentioned before, what about those who may never be ready for employment?

If you haven’t seen this documentary called Bottom Dollars, please watch it. Here’s an excerpt from their website:

“How would you like to work for two weeks, and come out with a $6 check?” That’s the reality for almost 250,000 Americans with disabilities who are paid below the minimum wage. This film exposes this exploitative system and offers solutions to end segregation and discrimination against workers with disabilities.

Bottom Dollars exposes the exploitation of nearly 250,000 people with disabilities in the U.S. that are legally being paid less than the minimum wage, on average, less than $2 an hour. The documentary calls for the phase out of this unfair practice of sub-minimum wages and sheltered workshops, and offers solutions for fair wages and inclusive employment.

“Investigations by the National Disability Rights Network have found that hundreds of thousands of people with disabilities are being segregated and financially exploited in the workplace due to unfair and antiquated labor laws,” said NDRN Executive Director Curt Decker. “In this important documentary, we hear in their own words how this outdated practice harms workers with disabilities and keeps them from reaching their full potential. Their stories are a reminder that we must continue working to end segregated work and the sub-minimum wage.”

“Now is the time to end this antiquated and downright insulting exception to minimum wage laws,” said David Carlson, Executive Producer of Bottom Dollars and Director of Legal Advocacy at Disability Rights Washington. “The exception was written in a bygone era, long before children with disabilities were allowed to go to school to get an education and marketable skills, long before state and federal anti-discrimination laws protected employees with disabilities from discrimination, and long ‎before multiple state and federal programs were created to support people with disabilities secure and keep meaningful employment. Nothing short of fully repealing this exception is acceptable and I hope this film helps people see how flawed the assumptions underlying this exception are.”

The goal of Bottom Dollars is to empower advocates and policymakers to provide workers with disabilities the basic protection of a minimum wage.

The documentary features personal stories and expert interviews from around the country. Expert appearances include the National Disability Rights Network’s Senior Disability Advocacy Specialist Cheryl Bates-Harris, National Federation of the Blind President Mark Riccobono and Director of Advocacy of the Center for Disability Rights Stephanie Woodward, among others.

“Working in an integrated setting opens up people minds about people with disabilities and what they can do,” said Le’Ron Jackson who used to work in a sheltered workshop, “For me, it has been life changing because I feel like I’m a part of society and the working American public versus when I was in the workshop, I felt like a nobody.”

 

http://www.rootedinrights.org/videos/employment/bottom-dollars/ You can learn more about the film using this link. Pictured above are some of the people who the film follows.

Let’s talk about Goodwill for a bit.

A Goodwill CEO who is blind makes a 6 figure salary, yet he thinks its okay to pay other individuals with disabilities working at Goodwill as low as two cents an hour wage. Their average employee with a disability makes $2.00 an hour and some as low as 2 cents an hour. Depending on what state you’re located. How is this possible if there is a minimum wage law? It’s due to a 75-year-old legal loophole where companies/nonprofits can apply for a special wage certificate. This loophole makes it perfectly legal to exploited people with disabilities through sheltered workshops.

The following excerpt was taken from this article which you should read: http://www.ocalapost.com/goodwill-taking-advantage-disabled/

“If they really do pay the CEO of Goodwill three-quarters of a million dollars, they certainly can pay me more than they’re paying,” said Harold Leigland, who is legally blind and hangs clothes at a Goodwill for less than minimum wage.

“It’s a question of civil rights,” added his wife, Sheila, blind from birth, who quit her job at the same Goodwill store when her already low wage was cut further. “I feel like a second-class citizen. And I hate it.”

Section 14 (c) of the Fair Labor Standards Act, which was passed in 1938, allows employers to obtain special minimum wage certificates from the Department of Labor. The certificates give employers the right to pay disabled workers according to their abilities, with no bottom limit to the wage.

Most, but not all, special wage certificates are held by nonprofit organizations like Goodwill who then set up their own so-called “sheltered workshops” for disabled employees, where employees typically perform manual tasks like hanging clothes or separating clothes hangers.

Supposedly some Goodwills are working to change this and a few have but overall as a whole, goodwill has some work to do.  all of this is the dark side of sheltered workshops. Through my work, I have met a lot of families that have put their loved ones with disabilities in sheltered workshops and they love it. They don’t mind the pay if any, as long as their loved one has a place to go and enjoys it. I don’t know. This is where I’m torn. Overall I think that sheltered workshop are negative because our loved ones deserve a fair pay and should have the chance to get a competitive job. For those that can’t get a competitive job, we need better day programs and options. Sooo… I guess I do know where I stand.

What would I want for Joel? Honestly my parents and I sort of hit a roadblock when we discuss this. My parents are extremely fearful for his safety since he is nonverbal. I want him to go through a vocational program and get supported employment. I think he’d do okay with a job a few hours a week and when he’s not at work maybe go to a day program. My parents are leaning more towards just a day program. I still have time a few years to convince them.

Although here in Louisiana, vocational rehab doesn’t start until the last two years of high school, at home we have started our own training. The sooner we start, the more practice we get in and Joel can be more prepared for his future. Most of you know we have been teaching Joel to make soaps, candles and more at home which we then sell at art markets in New Orleans. Joel has potential and I think that most people with disabilities do if given the chance. They deserve to live a meaningful as full participants in our society.

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

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:

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