21 Facts

21 FACTS about DOWN SYNDROME

To celebrate #downsyndromeawarenessmonth🎉

  1. Down syndrome is a genetic condition caused by an extra copy of the 21st chromosome
  2. It is not hereditary, meaning it is not passed on to child from either parent
  3. It is not an illness or a disease. People with down syndrome aren’t sick or contagious!
  4. Down syndrome is the most common genetic condition. 1 in 700 babies are born with Down syndrome
  5. The abortion rate of babies with Down syndrome is about 80% in the U.S
  6. Down syndrome is not a spectrum. One either has it or not; ability is based on the individual, not the condition
  7. There are 3 types of Down syndrome: trisomy 21, Mosaic, and translocation. Trisomy 21 is the most common.
  8. Not all people with Down syndrome are the same. Everyone who has down syndrome has their own personalities and shouldn’t be characteristics. They aren’t  “always happy” or all “angels”
  9. Having Down syndrome does not mean you will be a perpetual child
  10. People with Down syndrome can have jobs
  11. Many people with Down syndrome have meaningful relationships and can even  get married
  12. People with Down syndrome can get a post-secondary education. Thankfully, there are more and more opportunities opening up
  13. People with Down syndrome have all the same rights as any other citizen (seems obvious.. right???
  14. The life expectancy of people with Down syndrome has increased to 60yrs from 25 in recent decades
  15. Many people with Down syndrome can live on their own (some just need more support than others)
  16. They are aware of the way people perceive them; meaning your stares and words can affect them
  17. Having a sibling with Down syndrome has a positive effect on children
  18. Studies show that including students with Down syndrome in a regular class setting is productive and beneficial to all parties
  19. People with Down syndrome aren’t suffering from a condition
  20. We aren’t searching for a cure!
  21. A Down Syndrome diagnosis isn’t a death sentence to your family or your child.

Happy Down Syndrome Awareness Month!!

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Self Injury

He looks so precious and sweet in that picture doesn’t he? Well the day that picture was taken Joel had a huge meltdown. Our mom cleaned his room while, which he hates when she does this. When he noticed that she cleaned he immediately yelled and started throwing things back on the floor like he always does. But at one point he just started crying inconsolably and hitting himself. Hard.

He was obviously looking for something but we couldn’t make out what he was looking for. I tried holding him down and hugging him so he would stop hitting himself. It worked a little bit but he would continue to cry and as soon I stepped away he’d hit himself again. After a while, I make out the word book. I ask my mom if she took any books out or moved them and said no but he left these books on the bottom shelf. ( she hadn’t touched any of his shelves and just cleaned up the floor) I showed them to him and he started laughing and said thanks. Even though he is the one that put them there and forgot, anytime he saw my mom again that day he cursed at her and hit himself again. He eventually forgave her and kissed her that night after he was able to calm down by watching Descendants on Disney channel.

He found a crown, put it on and pointed to the character on Descendants and kept saying “Me!” Thus the picture. You can’t really tell on the picture but that day he busted his lip on the inside, bruised the side of his nose and left read marks on his cheeks and forehead. He was very sad about his face and FaceTimed my boyfriend for comfort but he kept hiding his injuries and apologized. A lot of times he won’t talk me but he’ll talk to my boyfriend but as long as he’s okay, I’m okay. He iced his face and would look in the mirror very sadly. We tried explaining to him that he just need to calmly tell us and there was no need to hit himself but there’s no way of knowing is he completely understands. So far, this is probably the worst it’s ever been. And I pray it doesn’t happen again.

I know I’ve shared about our boy being violent in the past. His early teen years were a little tough, he would bite, hit, and throw things at us at home. For the most he has always been very well behaved InPublic or with other people. But for most of his mid to late teens he wasn’t very violent at all. To himself or others. Of course he still had his moments but nothing scary or serious.

In the past two years or so he has been hitting himself when frustrated. Although I’m glad he isn’t turning his frustration and hitting others, it really breaks my heart when he hurts himself. Sometimes it seems random and other times he is clearly upset about something. The worst part is that he can’t tell us what the problem is. I might be too sensitive but I literally sit there and cry at times because I know he’s upset and he can’t tell me why.

I’ve worked with families that have had this issue before and I have read about it but for the most part it’s all about therapy and medication. It took us a long time but we have finally have him with a psychiatrist but I guess we’re still in the trail and error phase… before doing this, I had tried to get him in with ABA or similar therapies but almost all have age limits and said he was too old. Others have giant waiting lists. I’m still going try to the therapy though.

His psychiatrists seems to agree that maybe a lot of his frustration is not being able to communicate. He has agreed to look for options for Joel to help him through this as well not just focus on medication. The school system did their assessment of Joel to see if he would benefit from a communication device but said the results were that he wouldn’t know how to use it. They also said if they teach him sign language that he’ll never learn to communicate. I have my issues with this and his teacher seems to be on our side and has shown me all the requests she made for Joel. It’s definitely on my list to revisit this issue again soon with the school board.

Worth

I don’t know if y’all have seen that story of the family that is suing because their child was born with down syndrome. How disgusting… It’s really so hard for me to imagine people being so hateful and just plain disgusting. Here’s the story:
When I was looking more into this story, I found another one. How crazy… There’s more than one couple that feels this way? There really are people that disgusting and vile. I seriously just don’t understand. So apparently another couple in 2012 filed a “wrongful birth” lawsuit because their daughter was born with down syndrome.

The couple stated in the lawsuit that they would have aborted their daughter if they would have known she would be born with Down’s syndrome. They claim that they love their daughter and treat her the same as their other children.. but would have aborted her?? They have demanded over $2 million from the hospital where they received care to pay for the “extra medical care” she requires. Really?

They accused the hospital of being ‘negligent in their performance, analysis and reporting’ since they didn’t detect down syndrome in any tests or ultrasounds, scans and whatnot. And… they actually won! Ehhh…. what now??

Their logic is that they deserve compensation for the long term care for their child with down syndrome. But what does that say about other parents of children with down syndrome? Do they all deserve $2.9 million? Or are these particular parents just greedy? Like I know there is help and support out there, like a lot.. but I get that some assistance is based on income but still… sue because the hospital didn’t detect down syndrome?!
THEN!!!! They had to audacity to complain that people were sending them hate mail. Ya asked for it chumps.
I cannot imagine a world without our Joel. I know my parents would have never aborted him if they got a prenatal diagnosis, but what if my parents and all parents who have children with down syndrome thought this way. It would definitely be a sadder and a very boring world. His life is worth every obstacle.
I know I’m not a parent and I don’t know what it is like to have a child with down syndrome when you weren’t expecting it. But I can speak as a sibling. Yes, my parents had their ups and downs but they got through it and they only say great things about having Joel. I watched them be confused and learn along they and I’ve watched them love and accept him. And as his sister, he has been the greatest little brother. Our family wouldn’t change him fro the world. He has worth. And stories like this make it seems like the world is against him and others like him. There is still so much misinformation about down syndrome or not enough information. This is why we advocate and spread awareness, so people don’t react this way when they have a child with downs syndrome or any disability for that matter.
This may be a VERY biased post and I probably shouldn’t judge them because I don’t know their life experience and their personal life but… too bad. Here are my thoughts, bye.

Down Syndrome Proudly

Me: “My brother has Down syndrome.”  Almost everyone: “Oh no, I’m so sorry!” and the occasional: “How long does he have to live?” Excuse you!?!?

I remember the first time I heard someone ask me how long he has to live, and I played it off. I was like no he’s fine! But then quickly googled it as my heart raced thinking he would die soon.  Poor little uneducated me… through this google search, however, I learned that yes, people with down syndrome had a lower life expectancy due to misinformation leading them to be all institutionalized and forgotten therefore not taken well care of. It’s actually very horrific, I think it’s very important to learn about it but be warned if you research this stuff it is heartbreaking and the images will make you sick. Anyway, luckily, times have changed and now the life expectancy is pretty average like anyone else.

Thank God! I can’t imagine my life without my brother, Joel. He certainly is my whole world and I’m so grateful for him. Joel is an amazing addition to our family and our family is so grateful for him. But, like many families, Joel came to us unexpectedly. My parents come from El Salvador and have a language barrier, so growing up I didn’t hear much from them about Down syndrome and it turns out they didn’t know a lot either.

My mother is a quiet one. When I’ve asked her questions about Joel’s diagnosis and all, I’d 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 affect her let alone has her life consumed by it. We were interviewed by a local Spanish news station a few months ago and to my surprise, my mom opened up and I learned more about her Down syndrome journey.

She said her pregnancy was normal at first but a few months in, her OBGYN was concerned. The doctor noticed that Joel was too small and saw signs that there might be something wrong. They wanted to do an amniocentesis. My mom thought about it and talked to a friend who advised her not to do it because she was afraid it could lead to a miscarriage. Her friend 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. She decided if Joel was different in any way, she’d find out at birth.  And she did.

Joel was born prematurely at I believe 7 months.  They told her almost immediately that he had Down syndrome. She said he didn’t cry and weighed only 2 pounds. He was so tiny and fragile. She admitted to feeling upset about it at first. 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 language completely. I did some snooping into some old paperwork my mom kept and found out they did not get the formal diagnosis until he was three months. I also noticed that my parents were referred to the Down syndrome clinic but never went and that they received letters to sign up for other services but had trouble navigating the system and didn’t follow up for years. They did go to some specialists and they did put him in Early Steps. It’s not like they didn’t try or didn’t want him to get all the help he needed, they just needed guidance and it took a while to get it. My dad admitted they rejected some help and resources at first not really knowing why; could’ve been pride or again the language barrier. At the time, there really wasn’t as much help and accessibility to people who did not speak English.

I think it is safe to say that I was of ignorant when it came to Down syndrome, I knew the basics, the tint bit they teach you in school about it and would see an occasion random story on my Facebook feed about someone with Down syndrome. But overall my view of Down syndrome was limited to what my experiences with Joel were. Growing up, we did not interact or spend a lot of time with other people with disabilities.  In fact, I didn’t even know Joel had a disability until I was like 8ish… My family just never really talked about it. I don’t think that my family purposely did this. Part of it could be cultural and the language barrier, but I as I got older I wanted to change that. Up until about 5 years ago, Joel’s only interaction with other people with disabilities was through school and the occasional bump in out in the community.

His first venture was with Lion’s Camp. Which turned out to be his favorite thing ever. It’s a week-long camp with other teens with developmental disabilities. As time went on, I learned about so many more opportunities for Joel and me tried to get him involved in as many things as possible. Like Miracle League, Special Olympics, dances, and all kinds of other random activities and events. So he now basically stays busy all year round and he loves it and I love being a part of it all.

My relationship with Joel is pretty much the same as most siblings. Sometimes he loves me and sometimes he hates me. When we’re in public he, he’s usually pretty mean to me. Sometimes he cooperates and sometimes he doesn’t want to be near me. At home, he is much more affectionate but can still get moody to a point where he doesn’t want me in his room. Other times he is so clingy and follows me around the house. Either way, I love him completely.

Joel is also mostly nonverbal. He tries his best to communicate and but he can only say a handful of words. Somethings you can only understand if you spend enough time with him. But he stills finds his ways to communicate. Everyone learns and grows at their own pace regardless of whether or not they have a disability. I have seen his speech improve, in the past couple of years but it is still pretty behind most of the other people with Down syndrome that I have met. Even the younger ones. It used to bother me and to be honest, it still makes me jealous at times. But I am coming to terms with where Joel is. If I keep comparing Joel to others, I won’t be grateful for where he is. And I am grateful for where he is. I am so proud of him, he has come a long way and has more to learn. Even if he doesn’t improve his speech, it’ll be enough for me. All of that to say this, the boy won’t shut up at night! Just like any other siblings, Joel and I get into fights. One of our most common fights is at night because he talks so loud and laughs so obnoxiously at night and keeps me up. But I wouldn’t trade it for anything.

Joel has taught me so much and has literally shaped my life and has brought to the path that I am in now. Life with him is so fun and worth all of the late nights, restroom accidents, tears, scares… everything!

All I will say now is I Thank God Joel has Down syndrome. I know it may not be something people ask for but I am happy God gave us Joel. I know all of our lives would be completely different if he didn’t have Down syndrome. I am grateful that he was created this way. No pity, no prayer requests on changing this, no. I think it’s time to change the narrative. Down syndrome isn’t a curse on your family. And there is no need to apologize to me because my brother has Down syndrome. And for the record, when the doctor was worried there may be something wrong, he definitely did not mean Down syndrome. At least that’s how I’m interpreting it. Because there ain’t nothing wrong with being born with Down syndrome! My brother has down syndrome, proudly!

Giggles

The night is dark and full of terrors…

Imagine that its the middle o the night. The house is silent. And out of nowhere, you hear a creepy laugh in the distance. You may also hear random mumblings and things shuffling. Sometimes even yelling. I think nothing of it now but occasionally someone who isn’t used to it will hear it and gets scared or weirded out.

It’s Joel. Laughing, out of the blue… just because. No reason. I suppose he has a lot of restless nights. Some nights he makes a lot more noise than others. Lots of nights he seems to be having arguments with himself other nights seems to be telling himself jokes and he just laughs and laughs.

Does anyone deal with this?

Sometimes he really does keep me up but mostly I find it cute and funny. He struggled a lot with sleeping, he becomes sort an insomniac. Things have gotten a little better, he was on melatonin but we’re in the process of trying different stuff behaviorally.  In the meantime, I’ll enjoy his creepiness at night.

 

Everyday Choices

I recently heard the phrase “he’s non-verbal, he can’t decide what he wants to do.”

WEEELLLLLLL!!!! Let me tell ya!

So Joel is considered non-verbal. He can say a few words but mostly communicates through gestures, pointing, gifs, and emojis. If you’re around him long enough his speech makes a little more sense but overall its hard to decipher what he is trying to communicate but not impossible. You just have to try as hard as he is.

We always give Joel choices throughout the day. I think it’s important to give him the liberty of making his life his life. I’ve mentioned before about supported decision making but today, I’m talking about more simple everyday decisions.

So… obviously, there are other ways that Joel can decide what he wants to do. Something simple that I do when I can’t figure out what he wants is I hold up my two fists and make him choose one. Example:

If we can’t decide whether he wants to go to Walmart or ice cream. I will hold up one fist and say its Walmart and the other is ice cream. Then he’ll touch the one he wants.  

I do not think it is okay to deny him of these simple choices every day of his life. If you believe that someone like Joel doesn’t have choices or I guess better said, can’t make choices, you are part of the problem. It is a very lazy and dangerous thought. All it takes a little effort on your part to enable someone like Joel to make their own choices.

 

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.

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.