Shouting Joel’s Worth

We’re FAMOUS!

Just kidding! But we did make our local Telemundo news station… at 10pm… when no one’s watching…

I was called by one of the reporters who also works as a PCA for one of our friends who also has down syndrome. She expressed that she wanted to do a story on us because she spends a lot of time with our mutual friend out in the community and at “special needs” events and has never seen another Hispanic. So her question was why? I think it is evident that there are still people who are ashamed of disability and/or have a stigma that just can’t be shaken. This is especially true about the Hispanic community. From my experience, it’s not often talked about.

So, she was told about us and after viewing our blog she decided we’d make a good interview. When she called she said she wanted us to share how life with Joel is and share about things Joel is involved. Basically wanting us to encourage other Hispanic families to not be ashamed and to show them there is so much they could be doing. she ending sending me questions about my role as a sibling (specifically in terms of his education,)  why I made a blog, what my reaction was to find out he has ds, and what I’d like the Hispanic community to know.

The idea was to get the whole family. My parents immediately said no and my sister was to busy. I came home the day of the interview and my parents were definitely dressed like they were going to be interviewed but kept insisting that they were not going to participate. After my interview was over the interviewer asked if they were anything else I wanted to share if I felt like I left anything out. To this, my dad had a lot of input. So the interviewer asked him a few more times if my parents wanted to be interviewed. They finally gave in. It was very cute, I felt like a proud mama.

My parents rarely talk about important stuff outside of like church related things. I believe I’ve expressed in previous posts my disappointment about my parents never really explaining down syndrome to me and how I have sort of resented their silence at comments others have made about down syndrome. Again, I blame this on their upbringing, being from another country and all that. But I was so proud that they finally decided to speak up. (not saying that they never defended Joel or never spoke up about down syndrome, but from my perspective, I never witnessed it enough.)

This was a first for me. To see my parents vulnerably speaking about how hard it was at first. I never heard Joels’ diagnosis story until now. My dad always says Joel is what saved him. I may share that story later on…

Joel’s diagnosis story:

My mother is a quiet one. When I’ve asked her questions about this, I get one-worded responses. I can’t get mad because I am exactly the same… Just about different things. She and I see down syndrome differently. It’s something I’ve always known. But for her, Down syndrome came to her as a surprise, and not necessarily a good at the time. Something she probably thought would never change her life and affect her every day.

She said her OBGYN was concerned because Joel was too small and thought there be something going on. They wanted to an amniocentesis. My mom thought about it and talked to a friend who advised her not to because she was afraid it could lead to a miscarriage. She told her that it would not matter how he came or what he came with because she knew my mom would care for him and love him either way.  So my mom did not go for it.

When he was born they told her immediately. Although she did not get the formal diagnosis until he was three months. (I know this from snooping old paperwork.)  She said he didn’t cry and weighed 2 pounds. He was so tiny and fragile. She admitted to feeling I guess anguished would be the best translation of the word she used in Spanish. She went on to say it was new and confusing. Both my parents reflected on how hard it was for them especially not really understanding the English completely. My dad also admitted they rejected some help and resources at first not really knowing why; could’ve been pride or refusing to accept it. I’m so glad they ended up in the interview as well.

Anyway,  a lot of the interview was cutoff of course. I like the parts where I shared the most important things did not make it but that’s okay. Hopefully, we were able to spread awareness for down syndrome and encourage those in the Hispanic community to branch out and look for support as well as getting involved in the community. The key take away was to not hide or be ashamed of anyone in the family with down syndrome and to look for help and support because it’s out there.

Here’s the video, it doesn’t get to us until like minute 11:45ish:

Advertisements

Family Support

A supportive family makes all the difference, along with early intervention. I want to share something that may be offensive and it’s not my intention to do so but I think it’s important.

There’s someone I’ve worked with who we’ll call Minnie. Minnie has down syndrome, is non-verbal, and she’s also dealing with the effects of ageing. I love seeing her and working with her but she’s very mean and aggressive. She is very delayed and does not possess many skills at all. Nothing seems to amuse her except combing her old teddy bear and pacing the halls. She barely sleeps and doesn’t let anyone touch her.

Minnie comes from a family that did not provide the appropriate supports for her growing up. Whatever the reason was, I don’t know… negligence, ignorance, fear, who knows. But I do know that if she would have had interventions, things would be different.

She currently lives alone with staff constantly changing and minimum visits from family. Staff isn’t always the nicest and can be lazy. The house is in bad repair and tiny. She rarely goes out. The family drives away good staff and is always stopping her from getting services and refuses doctor visits and treatments. She did not get much of an education. But I do not doubt that she is loved.

Minnie’s family is not super involved but the involvement they do have is misguided. Ultimately the choices that are have been made for Minnie and continue to be made just cause more harm than good. I’m sure that the family loves her and want the best, but what is best? I’m not saying I’m an expert or that I know best… but here are my thoughts.

  1. Seclusion is the worst
  2. Intervention is important
  3. Family support is everything

Now Minnie’s parents are not alive and she has a lot of siblings who take turns visiting her. As a sibling myself, I cannot imagine being the kind of sibling that leaves them behind like that. I know all families are different and there definitely are families that really can’t take care of someone with a disability… but I just can’t imagine thinking that Joel is better off living away from us and that strangers can take care of him better than we can. I love him so much.

In today’s day in age with so many studies and advocacy work, I feel like there is no excuse to think seclusion is best practice or to send people like Minnie and Joel away. But it still happens… a lot.

Minnie’s life is honestly sad to me and it’s not her fault at all. She grew up in a time where institutionalizing was the norm and schools were not required to teach students with disabilities. Her family was not educated about inclusion, ADA, and all that good stuff. We are still dealing with the remnants of the generation before IDEA and most of those families have no idea how to deal take care of their loved one with a disability… then add the effects of ageing too. Thank goodness things have changed and continue to change for the better.

Saving down syndrome is an ongoing task and we will not stop shouting their worth!

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.

 

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.

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

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!

 

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!

Guardianship and Supported Decision Making

I’ve seen a lot of online discussion promoting complete independence for people with disabilities. And I do promote independence, but not everyone with a disability will be able to achieve complete independence. A lot of times these posts also shame families that choose some kind of guardianship for their loved one with a disability. I know its a tough choice for many people and I don’t think shaming people who do not choose the same path as you is okay.

As a family we choose to go with a continued tutorship for Joel but we will be practicing supported decision making informally with that. Louisiana (where we live) only has three options for people with disabilities and their families seeking some sort legal protection for adults with disabilities. We have: Interdiction, limited interdiction, and continued tutorship. Continued tutorship is the least restrictive but you have to do before they turn 18, other wise you’ll have to choose another option.

Under a continued tutorship Joel:

  • Loses the right to consent to medical and educational plans
  • he does not lose the right to vote
  • he does not lose the right to marry but will require permission from tutor
  • he does lose ability to appear in court, so he cannot be sued but rather if anything should happen, his tutor will have to appear in court
  • he loses ability to buy or sell real estate and cannot enter into contracts

Just so you have an idea of what a continued tutorship entails. There is a lot more details and even some uncertainties, but we feel this is safer than leaving him without protections. Working in the field that I do, I come across countless families that assume they do not need to do anything like this because they believe the disability is obvious. I have had cases or have heard stories where parents weren’t allowed in IEP meetings, a person with a disability refused important medical treatment, a person with a disability signed over their SSI checks to a stranger, multiple cases where someone with developmental disabilities was jailed for a mistake or inappropriate behavior, and where a girl with autism married a guy she met online and signed everything she had to him. There are so many scary things that can happen, and I just want to make sure Joel and any other families who may not know about this gets educated and can protect their loved ones.

Now a little bit about Supported Decision Making, it promotes self-determination, control and independence. It’s a method of developing decision-making skills by relying on supporters to assist the person in collecting and processing information, and coming to a reasoned decision. Instead of having guardians or caregivers make decisions for them, supported decision-making enables them to make their own decisions with help from a trusted group of supporters.

In some states Supported Decision-Making is an alternative legal agreement to guardianship in that it provides a trusted environment for individuals who are seeking assistance with decision-making while still promoting self-determination. In contrast to guardianship, Supported Decision-Making is flexible and can change with the needs of the individual to provide more opportunities for independence. In some states, Supported Decision Making is an alternative legal document to other guardianship options. In Louisiana, you can practice Supported Decision Making informally or have it go hand in hand with whatever guardianship option you and your family chooses. You and your family just have to make sure you have it all written out in a legal document with your lawyer.

If you live in Louisiana and don’t know what guardianship options you have, check out the Legal Status Guidebook provided by the Advocacy Center:  Legal Status in LA For other states, here is some broad Guardianship Options

As I mentioned earlier, we chose to go with a continuing tutorship for Joel because we wanted to make sure he always has documentation to fall back on. But we still practice supported decision making when we can. Although he can’t verbalize a lot, we find ways to incorporate his opinions and his likes and dislikes into certain decisions.  We know his limitations and the world is full of dangerous people that can take advantage of him. So if he ever signs somethings that he shouldn’t, he’s protected.  We also wanted to protect him against himself. If he didn’t have the documentation and he refused medical treatment at some point, the doctors could refuse to give him treatment. Because of his limitations, he may not realize that medical treatment can be life or death situations. In my brother case, his supporters are made up of me, our sister, and our parents.

Supported Decision Making Guide

Many times we see that people with disabilities have someone else make their decisions and we want to encourage you to find your voice and having a part in your own decision making.  I know it can be hard so you don’t have to do it alone. The word supported means that you will have people backing you up. I think that everyone with a disability should be practicing supported decision making some capacity. It may look different for everyone and that’s okay.

First thing you will need to ask yourself is: Who can be in your group of supporters? Typically, we all seek our own circles of support and engage in supported decision-making in some way already. Depending on the issue, we reach out to families or friends, coworkers or classmates, or someone we trust before we make certain decisions like, changing jobs, making a big purchase, or whether or not you should sign something. A lot of times we consult with others, and then we decide on our own.

Likewise, people with disabilities may need assistance making decisions about a lot of very important things like living arrangements, health care, lifestyles and financial matters. But for some, just because they may need help making these decisions, it doesn’t mean they need a legal guardian to make those decisions for them. Some will and that’s okay! What they might need instead is a trusted group of supporters to answer their questions and help review their options.

When choosing supporters, ask yourself/loved one with a disability:

  • Does this person know my likes and dislikes?
  • Is this person trustworthy?
  • How do you know this person?
  • How long have I known this person?

You don’t’ want to ask someone you just met or even someone you met online. It is very important that you select supporters who know and respect the person with a disability’s preferences. Another important aspect is that the supporters honor the choices and decisions that the person with a disability makes. Supporters can be family members, co-workers, friends or someone you trust.

Imagine for a moment that you are standing in front of a vending machine full of food. You’re hungry and you know you have some change in your pocket, but you don’t know how to count it. How do you decide what to do?

  • You could start putting money in the machine and pressing buttons until something falls out.
  • You could also just give all your money to someone else without saying anything and hope they buy you something.
  • But neither option is likely to get you what you want.

Putting money in the machine and pressing buttons is what it’s like to live without support when you need assistance in decision-making. It doesn’t mean you don’t know what you want or you can’t make informed decision. It just means you don’t have or lack the support you need.

Giving your money and decision-making authority to someone else is guardianship. You lose any ability to participate in the decision-making process, including choosing what decisions need to be made.

If you can think of any alternative besides putting your money in the machine and giving your money to someone else, you’ve chosen Supported Decision-Making. You’ve kept yourself as a critical part of the decision-making process and you’ve asked for the support you need to make a decision. Support can come in all forms and can be tailored your needs and your specific circumstances.

There are many people with disabilities that have some sort of guardianship and still make decisions. As I mentioned earlier, you can be detailed in your documentation with your lawyer on what decisions your loved one with a disability can make on their own, who can make other important and complicated decisions and who can help them make decisions. I don’t’ want to sound like I’m against guardianship because some people will really need it. Whether or not you and your family file for guardianship is a personal decision that should be carefully made after reviewing all of your options and considering all of your needs, limitations, and emergencies.

For more on Supported Decision Making visit: SDM Guide

 

Upside Downs

Don’t let Joel’s grumpy face fool you, he was just confused and sleepy from his car nap. (It was an hour long drive)

A couple of weeks ago we went to the Magical Dance Party hosted by Upside Downs.  It was a great time and I’ve been wanting to share about it and I don’t know what took me so long but here it is!

Upside Downs is an amazing organization that I recently found out about. I don’t remember how I came across them, but most likely it was through work.  I have fallen in love with them. What honestly drew me to them was that I saw that my all time favorite celebrity, John Tucker from Born This Way was going to be at the party. I️ immediately got too excited…

So, I️ want to brag about this organization for a bit. Upside Downs Mission Statement is:

“Upside Downs, Inc. is a nonprofit, tax-exempt 501(c)(3) organization committed to helping the Down syndrome community through new parent support, recreational activities, raising awareness and advocating for a brighter future. We are a local affiliate of the National Down Syndrome Society and the National Down Syndrome Congress. Our goal is to promote the “Upside” and positive aspects of Down syndrome and further our belief that Anything is possible with Down syndrome.”

They are doing all kinds of things for people with Down syndrome and they’ve won my heart. They provide new families with gift baskets and kind words. They do amazing free events like one we went to, not only do they do that but at this party, every single guest with Down syndrome wins a prize. (Joel won tickets to see the Saints. It was his very first game) they also do a lot with self advocates. They are super great and I️ encourage families to look them up!

Joel had such a fun night. He literally danced as much as he wanted and was super sweaty. His favorite person there that night was Elsa! Here’s what Joel’s night looked like:

 

 

BA20A850-1D95-437B-B363-8C9D85E24A0B83E4FBCA-98EC-4A27-B87B-D0775B261828F36B1ACE-B948-4046-A29D-51380E69B2021F717A4C-E5D7-4F55-B18D-3251552E1FD8

 

254B518D-92FB-407A-BF95-5DDB2DF30348

 

See! Joel had fun! It was a great night, thanks Upside Downs😊

Religion in my Family and Disability

My family had a recent disturbing incident. At this point I don’t care if I offend anyone but I still won’t use real names. I have a family member with autism, we’ll call her Sophia the First. If you don’t know my family, most of us are very religious.  I love God and try my best to live my life in a positive way that I feel the bible has taught me. Not everyone that follows a religion, follows it the same way. With this said, here’s the situation…

Some people in my family that we’ll call Hydras, decided it was appropriate to pray over Sophia the First. Now prayers are always welcomed but not in the context that they did it. It was outrageous and hateful in my opinion. Hydra’s prayers were to cast out demons in Sophia the First. This was so disgusting. Demons?!? Really are we back in the old times were everyone who was different was evil? I really do not get how the Hydras thought they were doing the right thing. In what brain does that action register as okay.

When I was told about this incident, I didn’t say anything because I didn’t know what to say and I didn’t want to say the wrong thing. I told no one about it until 2 days later when I told my boyfriend and sister. I usually them everything right away but I guess I just didn’t want to think about this. I seriously couldn’t comprehend the actions of Hydra. At this point, I’m so sickened by this, I don’t want to see Hydra.

This situation brought up some past grudges my mom had with other Hydras in the family. She opened up to me and another family member of a similar situation that happened to her when Joel was born. Joel’s diagnosis came at his birth. No one was expecting it but that is no excuse for Hydra’s comments.

Hydra told my mom that she had to have been living in sin because children like that are not from God. God doesn’t give children like that. Hydra told my mom to pray for it to go away. My mom said she never told anyone about it and even though it bothered her and it was definitely not something a new mom to a child with a disability wants to hear, she pretended Hydra never said that. For the record, Joel is the greatest gift on this planet.

Religion is great, I love being a christian, but it was a weird effect on some people. I don’t understand why people would use God as an excuse to act so ridiculous and dangerous. We’ve seen it all through out history and it seems like those days are past us and then things like this happen.

Working in the field that I do, I have come across families that have had similar situations or that they themselves feel like God will take away a disability. I’ve even had people call that are in denial and think their child needs healing and some that use very harsh and ugly words to describe their child. But it felt so much more hurtful when it happened in my family. I do believe in healing but I believe you can’t heal someone from something that they are, something that’s a part of them.

I know everyone interprets the bible differently and everyone has the right to believe what they choose to, but don’t try to force it on someone else and don’t go around believing that you are right over everyone else. I just don’t believe people with disabilities have demons and I think it’s completely inappropriate to try to exorcise demons from them.

Its more important to love and accept each other’s differences and abilities. I know I can’t change the way some people think and arguing with them can most likely make it worse. So, I’ll hold on to peace.

Addition:

If you’re here you probably know what down syndrome is but I thought I would explain a little about autism. I got a request to clear some things up so here some information I often share with families with new diagnosis of autism. If you google autism, chances are you are going to find a lot of wrong and down right scary information. Take a look below.

What is autism?

When people refer to “Autism” today, they are usually talking about Autism Spectrum Disorders (ASD), which is a brain-based disorder characterized by social-communication challenges and restricted repetitive behaviors, activities, and interests. The Centers for Disease Control describes ASDs as: “a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.”

What causes autism?

There is no known single cause for autism, although the best available science points to important genetic components. Through twin studies, scientists have determined that autism is a genetically based condition. If one identical twin has autism then there is an 36-95% chance that the other twin will also be diagnosed with an autism spectrum disorder. For non-identical twins the chance is about 0-31% that both twins will develop autism spectrum disorder. The chance that siblings will both be affected by ASD is also about 2-18%.

Scientists are unsure what, if any, environmental triggers may be involved in autism. One theory, popular in the late 1990’s and early 2000’s, that vaccines cause autism, has since been disproven by numerous studies conducted around the world.

Characteristics

Autism Spectrum Disorders are characterized by significant impairments in social interaction and communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors include repetitive motor behaviors (hand flapping, body rocking), insistence on sameness, resistance to change and, in some cases, aggression or self-injury. Many individuals with an autism spectrum disorder have significant cognitive impairments, although some have typical or even above average IQs. 30-50% of people with autism also have seizures.

Prevalence:

In 2016, the Centers for Disease Control’s Autism and Developmental Disabilities Monitoring (ADDM) reported that approximately 1 in 68 children in the United States has been identified with an Autism Spectrum Disorder (ASD). This rate remains the same as in 2014, which is the first time it has not risen. However, with respect to older data, this new estimate is roughly 30 percent higher than the previous estimate of 1 in 88 children reported in 2012. In the 1980s autism prevalence was reported as 1 in 10,000. In the nineties, prevalence was 1 in 2500 and later 1 in 1000.

It is problematic to compare autism rates over the last three decades, as the diagnostic criteria for autism have changed with each revision of the Diagnostic and Statistical Manual (DSM), which outlines which symptoms meet the criteria for an ASD diagnosis. In 1983 the DSM did not recognize PDD-NOS or Asperger’s syndrome, and the criteria for autistic disorder (AD) were more restrictive. The previous edition of the DSM, DSM-IV, included autistic disorder, childhood disintegrative disorder, PDD-NOS, and Asperger’s Syndrome. Due to inconsistencies in diagnosis and how much we are still learning about autism, the most recent DSM only has one diagnosis, autism spectrum disorder (ASD), which encompasses each of the previous four disorders. — this gives us reason to believe that autism is not really on the rise, it just means we’ve gotten better at identifying the disorder. It may have increased some but not as much as people are often led to believe.

ASDs continue to be almost 5 times more common among boys (1 in 42) than among girls (1 in 189) and they are reported in all racial, ethnic, and socioeconomic groups.

 

All of this information was taken from: Autism Science Foundation 

I know this was a lot of science talk and what not. Let me know if you need more clarification or help understanding. Check out  our Resources tab if you need more resources for a loved one with autism or other disabilities.