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!

Advertisements

He’s a Wonder

He’s a wonder. ❤️

If you don’t know him personally, let me give you some insight. Joel is considered non-verbal. This causes a lot of frustration with him. There have been times that he’s gotten violent.

Not all days are good days.

He is the source of most of my happiness and love but he also has the power to break my heart at times. He’s physically hurt me before but he’s worth all the struggles.

I love my boy. He’s a wonder.

He can spend all afternoon in his room talking to the wall and get so mad if someone interrupts. I want to know what he’s saying, what he’s sharing, what he’s thinking. I know he has a lot to say but I’ll never know.

There are times where he randomly grabs my hand and smiles so sweetly.

Not all days are bad.

There are days where he doesn’t want me around but there are days where he’s too clingy waiting for me outside the bathroom door while yelling my name constantly.

Or when I’ve left the house without him and he’ll start FaceTiming me nonstop to the point where I can’t use my phone.

He makes my life a wonderfully fun (at times stressful) journey. Forever thanking God he made me your sister.

I love my boy. He’s a wonder.

Language

The way we speak says a lot, whether we realize it or not. Especially when we speak to individuals with disabilities. It is important that we are aware of our terminology and manner of speaking. There is power in our language and in what we put labels on, so we should be able to decipher what is appropriate and what is not. In order to be sure that what we say and how we say is appropriate, here are a few tips and recommendations to keep in mind when speaking to people with disabilities.

The first thing we need to understand is that people with disabilities are not suffering from a tragedy, struggling to become normal, victims, nor are they retarded. The word “retarded” really gets me! The diagnosis of a person is not the most important characteristic of a person. We do not go around introducing ourselves as, “Hello, I’m diabetic Joe.” So why would we do the same to a person with any kind of disability? They are people first, not their diagnosis. I’ve mentioned before on my post, Respect. In that post, I write about being respectful as in speaking respectfully and respecting the way others choose to speak. But overall I still believe in People First Language.
There have been many times that I have heard someone say, “poor thing”, “how sad”, or even “it makes me feel so sorry” referring to my younger brother who has Down Syndrome. I know they say this with good intentions; they are not trying to be rude and ignorant but things like that are not acceptable to say. My brother lives a very happy and productive life, and nothing about that is sad.
When speaking to people with disabilities, it is important to remember that they deserve to be treated as an equal. Give them eye contact and make sure that you give them time to listen, process, and respond. If they are having trouble understanding, please be patient with them. I know that sometimes it can be frustrating to constantly repeat yourself, but try not to let that show.
They are not oblivious to the difference in your tone when you speak, so be mindful of the tones you use and the reactions you give after they respond. In my brother’s case, unfortunately, I can lose my patience. The more I have to repeat myself, the louder I can get. He notices when this happens and constantly apologizes. Once he starts apologizing I
feel terrible and explain to him that he did nothing wrong and he should not apologize.

Another important thing to remember is to use appropriate language that they will understand; don’t use jargon, difficult words, or figure of speeches. Understand that sometimes it takes time for them to trust others. Everyone is different and not everyone will react the same way. The difficulties of one is not the same for all. The important thing to take away from this is that they are people first, and we need to respect that.

More information and tips can be found at:

https://www.aacap.org/App_Themes/AACAP/docs/youth_resources/misc/Youth_Voice_TipSheet_2012.pdf

http://www.sccoe.org/depts/students/inclusion-collaborative/Documents/Person-First_Language_Article.pdf

Regression?

I wanna say Joel was 10 years old in the picture. So about 8 years ago. So little. So precious. So long ago. I miss this little booger.

So Joel seems to be reverting back to some problem behaviors and also picking some up.

He has been more aggressive. Back in his early teen years, Joel was violent with us. He hit, bit, threw chairs, and cursed. He has been calmer in the last few years. He hasn’t bitten anyone recently nor has he thrown chairs or something. But, just like anyone he does get mad gets loud with us and occasionally throw something at the wall. But my point is this: Is he regressing?

Although he’s not as violent as he used to be, his behavior seems to be going in that direction. I know that I’ve mentioned his twitching before. My sister and I are no experts but we think his twitching is a behavioral thing. He tends to do it when he is annoyed or sometimes it seems randomly. The twitching he does can seem scary to outsiders. I’ve been asked if he’s having a seizure, if he’s okay, what’s going on when he does it in public and it makes it worse when people stare. We’ve asked his doctor about it they dismissed it and said basically it is because of down syndrome. I’ve been wanting to get a second opinion but there’s only so much influence I have in that department.

Anyway, I guess he’s been doing that a lot more in school now and his teacher is very concerned about it. We’re used to it because he does it a lot and has been doing it for years. But it has become more frequent, so is this a sign of regression?

He does seem to have to become more aggressive. Again is this regression? Possibly. His behavior wasn’t 100% but it has become a little more like when he was in his younger teens. He is starting to throw things and yell more along with cursing. Although he isn’t really being violent to others like he used to, we’ve noticed that he’ll slap himself. Which is definitely not good either.

Also, another area of concern is Joel’s accidents. He has been pooping his pants and elsewhere way more frequently than he used. I actually recently wrote a blog post about it. It used to be like once every few months and now it is happening at least once a week. To me, this is more clearly a sign of regression but I’m no expert here.

Have any you dealt with regression? What to do, what to do…

Joel and Jesus

This will obviously be a more religious post. and For reference when you are reading we are nondenominational Christians who lean more on the on the Pentecostal side sort of.

Does Joel know who Jesus is?

This question always gets me thinking. I honestly don’t know if he knows. I’ve asked him a million times and sometimes he says yeah and other times he doesn’t answer. I know he enjoys worship at church, although there are times when he just sits and fidgets with anything. There have been times where we’ve found him dancing alone in the bathroom to worship music but then again he also does the same to any pop song he likes. So the question is he worshipping or does he just like to dance to music? Probably both… Idk

Can Joel participate in la Santa Cena?

Okay, I don’t know what Santa Cena is in English. Eucharist? Last Supper? Communion? I looked it up but I got confused. Idk but ya the thing you do at church when you when you eat the bread and drink wine. Well, my dad always gets Joel his share of the goods (bread and wine) but one time, one of our pastors (we’ll call Papa Bear) gave us a whole list of people who shouldn’t take it. He said children and people who have not been born again/ baptized  and people who are not aware of what they are doing. Well, Joel hasn’t been baptized so my dad felt like he shouldn’t give him some. Joel noticed and got mad that he didn’t get to participate My mom and I talked to Papa bear’s wife and she disagreed with her husband and said Joel is a special case and he should get to participate but that he should get baptized soon if he understands what he is doing. She said since I know him best I should talk to him about Jesus and see if he understands baptism.

Well, that’s a lot of pressure! I don’t know if I will be able to do that. I feel like a lot of time he just nods or smiles at me when he doesn’t know what I’m saying.

On the contrary, our main pastor was much more chill and never has been opposed to having Joel participate. But this is something I do want to clear up with them eventually. Becuase otherwise it feels like we are treating Joel as a perpetual child and I don’t like that. We just can’t tell what he knows and what he understands. I know he gets a lot of stuff but when it comes to this I can’t tell at all.

My dad still lets Joel participate but I think we should be trying to get Joel baptized at some point. I might be overthinking all of this. Actually yes I am. Papa Bear really got me questioning everything.

Joel had an encounter?

My dad and I are pretty sure Joel had an encounter with Jesus a few weeks ago. Although some people do not think so.

So…. we were at a special worship/prayer meeting on a Friday with our sister church. Joel was standing and drumming along to songs with his hands on the seat as he usually does. Out of nowhere, he started crying. He was crying like he hasn’t cried in a while. There were legit tears streaming down and he was sniffling. This went on for almost the rest of the service. There was no explanation for it, it just happened out of nowhere. Everyone asked us what happened and why he was so sad. Did he get hurt? Did someone tell him something? Nope! nothing visible happened. Joel couldn’t tell me why he was crying but I choose to believe it was Jesus.

so I guess this is the confirmation I was looking for?

I choose to believe that God loves Joel anyhow and it might not matter whether he’s baptized or not.

I recently got some books on teaching people with intellectual disabilities about Jesus and what not so hopefully I’ll learn something. I know some churches have special programs I just don’t know any churches from my religion does this. We have taken Joel to special services at an Episcopalian church because they do a very cool summer camp. I have thought about starting a group for Joel and people like him but it’s a lot of work and I don’t feel ready. Maybe one day…

Does anyone have suggestions?

 

 

 

Sometimes, It Gets Crappy

See that beautiful face in the picture? See how adorable he is? Keep that in mind when reading this post!

Living and caring for Joel means that sometimes, you will have to put up with his crap. I mean literally. Literal crap… poo-poo.

He used to have way more frequent accidents when was younger, and naturally, as he got older, he got better.  I’ve mentioned in previous posts, about how it took so long to potty train him and how my mom had to go to the school a lot to change him or pick him after an accident.

Thankfully, the last time he had an accident in school I believe he was in 6th grade. I remember going with my mom to pick him up from school that day and he looked so sad and alone in the office. My poor little one. Knowing what I know, I would’ve argued about the para or nurse not cleaning him up. You’d think that if they go into this field they’d know or at least be kind enough to clean up our loved ones up after accidents but… NO!

The point I want to get, however, is the messes Joel leaves at home. Although I would say that, technically, he hasn’t had a real accident in years, he has had messes. My definition of accident is him pooping in his pants nowhere near the toilet. I don’t count it as an accident if he’s trying to get tot he toilet. To me, the terminology is important because I want him to know he’s doing a great job and not to focus on accidents.  He truly does get very disappointed in himself and cries. And if I get mad at him for his “almost making its” and/or his accidents, it makes it worse. He’ll not only cry but get angry and throw things or hit.

If you are easily grossed out, stop reading here! I’m serious, it gets gross!

Almost Making It

One night about 2 years ago I woke up to Joel silently calling me from the bathroom. Who knows how long he had been calling me, but when I finally got there was a trail of poop on the carpet from his room leading to the bathroom. When I got in the bathroom He was desperately trying to clean up the mess he had left and trying to clean himself in the shower. He was obviously sick and didn’t make it to the toilet. Unfortunately, he made it everywhere else. There was poop all over the toilet bowl dripping unto the floor, poop on the shower curtain, bathroom rugs, towels, and the bathtub. It was such a horrific crime scene. I did get mad at first and yelled and even threatened to go get the parents instead. But after seeing him cry and his efforts to clean it up, I felt bad and woke my sister up to help me clean everything and bathe him. After getting the bathroom and Joel settle I cleaned the trail he left behind and checked his room and bed for more poop. Sure enough, there was more cleaning to do.

This was definitely the worst it has ever been.

Usually, he may have a mess like once or twice a month that is nothing like the one I just mentioned. That was just horrific. Usually its a few drops of poop on the bathroom floor or on unusual spots on the toilet. Occasionally he’ll leave a trail from his bed to the bathroom but that’s rare. It’s all still really gross. We still have to check his booty after he uses it because he doesn’t always do a good job of cleaning himself. It’s gotten harder to help him because he wants to be independent and doesn’t want to let us in the bathroom. Which is completely understandable but I’d rather check him and clean him if needed than for him to get a rash or boils and be stinky.

It’s a struggle, but anything for my boy. Sorry, this was a gross post!! We’re here to share the good, the inspiring, and the crappy of life with down syndrome. Hopefully, at some point, we’ll reach full dependency in the bathroom. Until then, we’ll it take it as it goes.

 

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.

 

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!