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Siblings

What’s it like being Joel’s sister?
Being Joel’s sister is the greatest and most important role in my life. I know I talk about it all the time but how can I not? Joel is what keeps me busy and keeps me here. I would do anything for that boy.

Preface:

I know there’s a lot of talk and promotion to not refer to people with disabilities as a client if you work for them but, in all honesty, I think there are bigger things to worry about than that. I don’t see why calling them my clients is wrong when they really are my clients. I don’t know if anyone of you has seen this image of a man with down syndrome with his arms crossed with text over it: “client” is scratched out and then says, “I’m a person, brother, uncle, friend.” I understand that the image is trying to say think of our loved ones with disabilities as more than just a client. Awesome. I get it. But referring them as my client when they are my client is not taking away from that. I love my clients. I love hanging out with them, visiting them, taking them on all kinds of outings. I love giving them random gifts. I love doing all the hard work with them too.
If you go to an accountant to do your taxes, are you going to get offended by the accountant for calling you their client instead of _____? No, that’s crazy!  I completely understand that they are much more than just my client and they are amazing individuals, each with their own personalities and character. But also, there is nothing wrong with them being my client. It’s not a negative thing, it’s just a fact of life. Disabilities are natural and so is anything that comes with it. I don’t see it as demeaning and if you see it as demeaning, I’m sorry.
I recently saw this quote by Amy Sequenzia and I think it hits hard. “They use people first language and forget our humanity.”
Okay, I’m done with that.
But also..
Like I said before, in this post, I am no one to tell people whether to use people first language or not. It’s about your personal beliefs and arguing about it or correcting people is not constructive. It actually makes me so mad when I see a person without a disability correct someone with a disability about using people first language. I personally do like using people first language for the most part but I do see where in some instance it makes it look like we are trying to say that disability is a bad thing. Either way, whatever empowers you and your family, go for it.
Okay, now I’m done.
Working in the field that I do, I come across a lot of families, particularly sibling of the clients (my clients are people with developmental disabilities, mostly older adults) that I have. I’ ve seen siblings that do the minimum, some that do nothing at all but sign the name, and some that are extremely involved and helpful. Most of my clients are older adults whose parents are either very elderly or deceased. For many, this means that if their siblings do not step up, they have no family involvement. I can see why that would be hard for siblings to do if they never had a real relationship with their sibling with disabilities. Some don’t try though and that’s what really gets to me. It’s not that hard to visit or to call and check in and this leaves people like my clients forgotten. I just can’t understand that. I can’t imagine why.
I actually dealt with a parent of a client,  we’ll call Kitty, one time that said her other children did not ask for a handicapped sibling and that they did not have to burdened with Kitty. My heart died a little at that moment. This mother was distraught about Kitty pursuing a relationship. Kitty’s mother didn’t think that was okay or allowable. Kitty’s siblings are not in the picture and don’t seem to care or try to be part of her life, even though Kitty has tried to reach out to them. I don’t know how anyone can do that. How can anyone look at their sibling with a disability and say, you’re not that important to me, you’re not my responsibility? Especially after the parents have passed.
In my opinion, family is family. It should fall on the siblings to pick up the slack and help out but not everyone feels that way. My parents certainly did not pressure me to help with Joel, although occasionally they did ask for my help. I never felt obligated nor did I feel like it wasn’t my job to do so. I do everything I can for Joel because I want to and I know my parents need help navigating everything. Joel is like any little sibling, he fights us, annoys us, and sometimes hates us. But he also gives the best hugs, kisses, and laughs. I know as advocates for our loved ones with disabilities, we like to say that they can be anything and do anything… But at the end of the day, they really do need extra support and help. As a siling, I want to be that extra support when my parents can’t. And I don’t see how another sibling wouldn’ feel that way.
Well… yep. Those are my thoughts.
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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:

Progress

Today the average lifespan of a person with Down syndrome is approximately 60 years. In the ’80s, the average lifespan of a person with Down syndrome was only 25 years. This increase to 60 years is largely believed due to the end of the institutionalizing people with Down syndrome. (globaldownsyndrome.org) There are many disgusting pictures of institutions of small children with disabilities being mistreated and neglected. There was this stupid idea that children like this had to be put aside and forgotten. Not enough people cared.  
 
Because of neglect, abuse, lack of access to education and medical care, people with Down syndrome would die too early in institutions. Most people including most professionals considered it impossible for people with Down syndrome to live a meaningful life. The assumption was that people with Down syndrome would not walk properly, talk, feed themselves, dress themselves let alone work and go to school. They defined at birth to be a burden to marriages, siblings and families. They were not allowed to attend public schools and most people believed they should not be allowed in public spaces. 
I’ve read about doctors who would refuse to perform lifesaving procedures, such as corrective heart surgeries on people with Down syndrome and cases where doctors considered feeding babies with down syndrome as a living procedure and let them starve. Other cases involving doctors and fathers working together to tell the mothers of the newborn babies with Down syndrome that their babies had died, when the babies were really just being sent way to institutions never to seen or thought of again by the family. Because of this mentality, people with down syndrome and other developmental disabilities died at an early age and it was blamed on their disability rather than the quality of life that was provided to them.

Thankfully the world started to change for the better around the ’70s and people with Down syndrome and other developmental disabilities were seen as human. Through the years, many institutions were closed down, and it was now expected that people with Down syndrome would live at home, go to school and have fundamental human and civil rights, thanks to ADA and IDEA. In the last three decades, we have seen so much improvement in the lives of people with developmental disabilities. Many of these individuals are graduating, getting jobs, getting married; overall living very healthy and productive lives. (if you want to read more about ADA and IDEA, visit our resources tab)

People who lived in institutions all of their lives have missed out on show much and were capable of so much more. Here’s an example: https://www.lifenews.com/2016/05/10/family-starved-32-year-old-man-with-down-syndrome-to-death-he-weighed-only-69-pounds/

 
Although for the most part, the U.S has gotten away from institutions, there are still some out there. and I think some are still needed. I currently work at one as a case manager for residents who all have developmental disabilities. When I first was getting ready to move to this job, soooooo many people were asking me why I would do this. My previous job was advocacy work for people with disabilities and their families. Me moving to work at an institution was viewed by a lot of people as moving backwards. Regardless I moved to this job because I thought I could make a difference and help people in a different environment. I believe some families really do not have an option but to put their loved ones in institutions like where I work. But, I also feel that some of the residents here should have never come and some should not have come so early in life. Regardless, my job is not to judge that, but rather make their lives meaningful and enjoyable while they live here. 
 
I don’t think all institutions are bad but I can never imagine putting Joel in an institution. I think that there is no way that anyone can care for him and love him the way we do. In my opinion, as his sister, my siblings and I should step up to take care of him when my parent cannot do so anymore. I know not everyone feels this way but I do. 
Here some excuses I have heard from other families of why sibling can’t care for their sibling with a disability:
– My other children do not ask for a handicapped sibling
– We have our own lives
– Too much work
– I don’t know how to care for them
– Our lives shouldn’t be like this
 
I hate when people talk like this, I really do. But in all honesty, people who think and talk like this should not be caring for people with disabilities. People who are like this end up on the news for caging their cousin with autism in the backyard, or starving their child who has down syndrome, or any of those horror stories you have seen on the news. People like this and of course ageing families are reasons why institution are still needed, but institutions should not be used as the first option for everyone born with different abilities. Thankfully families are more educated and have more options like independent living and other programs. 
That’s it. Bye.

Communication

Have you ever you lost your voice and tried to tell someone something but no one could guess what you were saying? That’s sort of Joel every day. It really is such a horrible feeling when Joel is trying so hard to tell me something and I can’t understand him. The ability to communicate is often something the average Joe doesn’t think about. Joel mostly communicates through gestures and emojis. He does try to speak but most of it is very difficult to understand. The more you’re around him the more you’ll understand him. But even for me, there are times I can’t understand anything he’s saying.

I used to get jealous of other people with Down syndrome who could speak so well. I thought it was unfair and I always would think about how things would be different if he would’ve had better interventions or if we (his family) would have known better and tried harder or if the school system was better… These thoughts won’t change anything.

I’d be lying if I say these thoughts didn’t creep back in every now and then.

We’ve tried communication boards but he doesn’t really care for them. He’s used some type of assistive technology device when he was in elementary school but somehow the school system says he doesn’t need it now and/or he can’t learn to use. He used to do sign language back when he was in early steps but the school system refused to teach him. We’ve requested these at every IEP and it has gone to the school board nothing comes of it. (I definitely need to try again) We’ve looked at outside agencies for speech therapy but with no luck. We’ve been told that he is too told for speech therapy and that Medicaid won’t approve it anyway because he gets speech therapy in school. He has gotten an IPad from our OCDD with communication apps, but he doesn’t care for it. He doesn’t like using it for some reason.

Joel gets so upset with us when we can’t understand him sometimes and it breaks my heart. Other times he is so patient and will repeat himself a million times. At times, he’d get so frustrated that he’d get violent and throw things or hit people or himself. It easy to get mad at him when that happens but we have to remember that this behavior is communication. He can’t get out what he’s trying to communicate so it comes out in different ways because he doesn’t know what else to do to get us to understand.

Patience is key, and I don’t always have it. For that I’m sorry Joel.

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!

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.