Joel’s Birthday Revelations

Joel’s 18th birthday was this weekend, he’s officially an adult!  Our boy is so grown and he never ceases to amaze me and make my heart melt.

This was very big birthday for us. We celebrated his golden birthday on Sunday, 18 on the 18th. 18. EEEE! He’s reached adulthood. But what does that mean for someone with a cognitive disability? I know I wrote about guardianship before but I’ll go into more details about his transition into adulthood later on, I promise.

This birthday was special. It was also the first time he celebrated with his own friends. Joel’s friendship circle has always just been family, my friends and family friends. But this year he branched out and has met a lot of people just like him and he invited some to his party at his most favorite place on Earth, Laser Tag.


Anways, about two weeks prior to his birthday, we got the letter from SSI about his eligibility since he’ll be turning 18. We’d been expecting it and as always I helped my parents prepare for their meeting and filled out all the paperwork. This lead to me going through Joel’s old paperwork and documents from his diagnosis and doctor appointments, and old IEPs.

I learned a lot. I didn’t really get involved in Joel’s appointments and such until he was in high school so there was a lot about his life before that, that I didn’t really know. I only knew what my parents told me and from more recent documents.

One of the documents I was looking for was Joel’s original diagnosis. My mom always told me that they told her right away that Joel was born with down syndrome and that’s probably true and I never did find the original diagnosis. What I found instead was a doctor doing another evaluation of him at 3 months old and writing his assessments to the original doctor who diagnosed him along with a referral to the Down Syndrome Clinic at Children’s Hospital. It turns out Joel got his formal diagnosis at 4 days old. The assessment stated that Joel does indeed have Down syndrome, trisomy 21 and as a result is mentally retarded and may have other significant health conditions that can present itself later on.  I understand the use of the word retarded here as it was nearly 20 years ago and it was used medically, but I still felt uneasy reading it especially in light of recent events. Luckily the medical field has replaced that phrase with intellectual disability. (In case you don’t know why, it’s because the term retarded has lost it meaning because people use it wrong and it has become a hurtful and demeaning word.)

The referral that came with this document had me asking my parents a lot of questions. Mostly, “did you know what that said?” Sadly my parents did not have someone to help them understand everything and missed a lot of important things. They hadn’t realized that they missed things because they didn’t understand what was sent home and no one translated it for them. My mom of course blamed my dad (because he supposedly knows more English) but in his defense being able to get by in life with English is different than actually knowing English. English is a hard language to learn especially if you looking at  medical documents. The point is that Joel missed appointments and interventions that could’ve really helped him. It’s useless to put the blame on anyone. It was years ago and Joel is still perfect anyway!

Luckily they met a doctor later on who my mom babysat for who help her get other supports and early intervention. I wish I was older then, so I could’ve helped them.

Looking through his IEPs was a whole another ordeal too. Some teacher wrote offensive things and my parents had no idea. Those IEPs were passed down and no one ever told my  parents anything. I remember one phrase that stuck with me that was written. Joel was 8 years old when he was finally fully potty trained. At home he was using the restroom on his own better but at school he had a lot of trouble. And I know that teachers have a lot to do and cleaning up accidents is something no one really wants to do, but they had the responsibility to do it. Or ya know… get a para for him. But um, the IEP said, ” Joel does not mind sitting in his own void, and does not want to use the toilet.” I read that phrase to my mom and she got mad. She said she remembers how much of a hard time the school gave her about his restroom needs and how she would constantly get called to go there and change him. I remember once she sent him to school with extra clothes and pull-ups and they made her come back to school and they gave them to her saying they would not change him. I’m sure they were convinced that he wasn’t being potty trained and home which he was! He just had a harder time at school.

I remember when he was born and I was not allowed to see him for a few days. I don’t know why. I remember my mom stayed at the hospital a while as did Joel and my aunts and dad took turns caring for my sister and I. One day, my dad got my sister and I all dressed up and we finally got to see Joel. He was perfect. I remember bragging o everyone at school about him. I had no idea he had down syndrome and I didn’t know for a while.

But I know I told you all about one of my family member’s thought: Religion in my Family and Disability But I just wanted to reiterate how much it sickens me that not everyone was so accepting of Joel. Joel having down syndrome is not a punishment! My dad constantly says that Joel was the reason he changed. (He used to be an alcoholic.) He was a gift and continues to be so!



I’m Sorry

This picture was taken in Leakey, Texas this past Thanksgiving. Joel struggled so hard to get up there and I think I’ve mentioned this before but he really has some balance issues. We all had to push him up because he was determined to get there. I love my boy! Any who….

Some times, people think the appropriate response when I tell them my brother has down syndrome is, “Oh, I’m sorry.”


I remember one of the first times that happened to me and I responded in a civil way and said that it was completely okay, there’s nothing to be sorry about. And this person said, “No, no. We don’t need to talk about it.”  Alright… Whatever man.

So let me tell you about my boyfriend, Huy. He met Joel right away back when we were in high school and we did a lot of volunteering with Key Club. I would always bring my brother along to events and everyone knew him. So Huy knew when we started dating that Joel had Down syndrome and he never really talked about it, but he always played with him and treated him great. So when he told his sister about us and about Joel, they were very sympathetic about Joel. Because ya know.. apparently it is a very sad thing to have a family member with Down syndrome. They asked him how long Joel has to live. Huy did not tell me about this conversation until months later. He was scared to bring it up or something because he did not realize that people with Down syndrome have a lower life expectancy. (They don’t anymore, he just thought that because what his sisters said) I can’t remember how he finally told me about the conversation but by that time he was not as ignorant about Down syndrome anymore and he told me the story as in a, “can you believe it” kinda way. I think I got a little offended at first but I can’t be mad that they didn’t know. But it was also funny to me because I knew he knew better at the time he told me. I’m glad he is not ignorant about it anymore, his relationship with Joel makes me one happy camper.

DISCLAIMER: His family is great and they have never said anything rude or inappropriate about Joel. They are loving and so nice to us. Often times I’m very jealous that I don’t see them as much. Y’all have no idea how much I like his family. So just know I’m not trying to make them look bad, I’m just sharing my life as always. 

My most recent encounter with the response of I’m sorry was at a restaurant. At the table was my sister, me, Joel, and our friend. So we all look ethnic and different from each other so the hostess for some reason wanted to guess all of our ethnicities. (in her defense, she was also Hispanic, and Hispanics always try to guess what country everyone is from.) Weird from the start. When she got to Joel she said, “Umm, I don’t know, you’re confusing. Maybe Asian.” All I said was, “No he has Down syndrome.” She got very awkward and said she so sorry and she did not come back to our table I believe, if she did I probably would have ignored her honestly. I remember being really mad about the hostess. I was really negative about it and rude. Which is probably not the best way to handle a situation like like. It was just weird thing for her to do in the first place.

People with Down syndrome aren’t sick and they do not have diseases. They can most definitely without life their parents nowadays. In past things were different and their life expectancy was in the 30’s I believe but most people believe it is because for the most part they were put in institutions and weren’t cared for as much, therefore prone to more sicknesses and what not. Luckily this is no longer the case. Although there are exceptions, like those who have other ailments along with Down syndrome. But Down syndrome alone is not a cause of death. DS Facts

A lot of people aren’t exposed to disabilities and therefore do not know how to react or what to say. I get it. It’s okay, we can use these types of situations as a learning experience. I guess some people are sorry because they think caring for someone with a disability is hard. Which sometimes it is. But I’m not sorry about my life, Joel isn’t sorry about his life and I know lots of families who aren’t sorry about their lives.


Wisdom Tooth

Joel had a wisdom tooth removed today and he was a mess all morning. He is usually so well behaved and cooperative with doctors. He actually loves going to the doctor, when he gets a minor cut or the slightest ache of any kind he will over react and ask for the doctor. Every time we drive by a hospital he points to and says, “Doctor!” and pretend like something hurts.

Today was a little different. He was nervous from the start and barely interacted with anyone. He was quiet the whole ride to the orthodontist and only asked once where we were going.  His eyes were wide as he just stared out the window the whole time. Although, he was acting cool in the waiting room, by “reading” through magazines and sniffing cologne samples. When they called his name he quickly got up and held his head up so high he couldn’t even see where he was going.

Once they sat him down in the chair, he immediately looked petrified. He stared blindly at the wall and would not move a muscle while the assistant was getting him connected to the machines and what not. A couple of times she had to physically lift his back or arm because he just wasn’t budging. My mom and I tried to smile at him and interact with him but this was met with very aggressive grunts and balled fists. On of the nurses who saw him a while back came int o try and cheer him up by mentioning the Saints and Drew Brees but Joel avoided eye contact at all costs and didn’t even make a sound. Props to her for trying though!

Once the doctor came in he began to search for his veins. This took a while.  So a little back story with this:

Joel was supposed to get his wisdom tooth removed in October but that didn’t happen. At the time he was seen by a different doctor at the same practice. I was unable to go his initial appointment back then but that doctor told my parent Joel need to get the procedure done at Children’s hospital but before he could schedule anything, he needed to get clearance from his cardiologist. Days went by and we heard nothing, and I assumed that they would call us. I can’t remember exactly why I was waiting for a call from the cardiologist but I remember they were supposed to call me the following Monday. I waited Monday and I expressed my aggravation with my dad right before I was about to call and he said, “wait, cardiologist? for Joel?” Turns out, they called him right away after they spoke to me to give us the clearance and he completely forgot to tell me. I always tell the doctors’ offices we go to for Joel to call me first because something like this happens, or they misinterpret something. Most places claim they have translating services but a lot of times they do not. So anyway, I call the orthodontist office and I have the clearance faxed over and they said they’d have the doctor look it over and then they’ll call us back to schedule the procedure. Before I knew it like two weeks had past by and we had heard nothing. Granted, I should’ve been on top of it but work was very busy during the last months of 2017 and the holidays were here and Joel had a full schedule of extra curricular activities.  I know, excuses, excuses… Well by the time I called the orthodontist office, it was I wanna say the first week of December. AND! It turns out the doctor who first saw him had left the practice and was left all the patients in limbo. I was able to schedule another appointment with a different doctor for early January but they basically had to start over. This time I was able to go with my mom and Joel for the “first” appointment. everyone was super nice and apologetic. The nurse and Joel instantly hit it off and Joel was bragging about meeting Drew Brees and showing pictures. Complete opposite from this today. They schedule his wisdom tooth removal quickly by squeezing him in early in the morning for two week later and said they were going tot he procedure at their practice. I asked if they longer wanted to go to Children’s. This doctor immediately protested and asked if the other doctor told us that. He said that the only reason they go there is for children medical complications. Down Syndrome itself, is not a medical complication. (PREACH!) he asked if there was any reason why we thought they should go to Children’s. I mentioned that Joel is notorious for hiding his veins. It usually takes a long time and sometimes multiple tries. But we were okay staying at the practice if they could handle the veins. They did a test run and the nurses couldn’t find it but the doctor ended up finding it after a few minutes. We agreed that the doctor would handle his I.V although he did say it would be harder to find his vein on the day off because he would have to do it on a fast. But we trusted him so that’s that.

So anyways, without exaggerating, it took about 10 minutes for the doctor to find his vein for the I.V. At this point Joel was starting to get very trembly. He knew what was coming, that part was familiar to him. The assistant was so great with him. she held his hand and rubbed his shouldered to comfort him. But when the doctor sprayed that cold numbing thing, Joel started to loose it and started shaking really hard and crying.  I immediately thought that the doctor wouldn’t be able to insert the I.V since he was moving so much, but he did it so quickly and successfully. They all comforted Joel and told him how great he was doing. At this point we had to go to the waiting room while they did the actual procedure.

They were done in about 15 minutes and called us in once he had woken up. He looked so sad and confused when we got there. He was very quiet and a little out of it as expected. We stopped at Walgreens to pick up his meds and he wanted to go too. ( He thinks he’s sneaky but we knew why.) He picked out a toy to take home and his mood changed immediately. When we gt back into the car he asking for McDonald’s and pizza. We had to break it to him that he won’t be able to eat that for a week but he seemed cool about it. He usually gets so mad when he is denied food.

We got home, fed him some soup, gave him his meds, put on his favorite movie (Nacho Libre) and he played with his new toy.  He seems to be a happy camper for now.

In Case You Need Some Encouragement

Raising a child with special needs is hard work. I know I’m not a momma I do get tired, worn out, and worry about his future.

Those late nights where Joel cries because he had a nightmare or isn’t feeling well. (our rooms are right next to each other and I am usually the only one that can hear him, plus I’m a light sleeper) Other times he walks into my room to ask for help, medicine, or for cuddles.

Or those other late nights where he won’t go to sleep and is talking and laughing with himself until 2 am. (Joel can’t really speak but you can tell he’s have a crazy conversation with himself, he changes tones, whispers then yells, I don’t know how to explain… I might insert a video here at some point.) Sometimes, he’s annoying and other times he’s too darn cute to yell at. He’ll creep into my room with Jenga or UNO and say “Play?” in the cutest possible way. So hard to tell him that I’m tired and want to sleep.

Those days when he won’t leave me alone and even when I go to the restroom and he constantly knocks asking me where are you. When he’s sick or bored, he can be so clingy.

Then there are really bad days where he’s violent and mean. Those are really tough. I’ll write more on this later on.

Joel’s Health is huge concern too It can be hard and tiring dealing with all of his medical appointments and treatments. He usually cooperates so well with this because he loves going to the doctor. The only thing that is so hard for us is managing what he eats. The boy won’t listen and fights.

Not to mention school. IEP meetings, phone calls, paper work, lack of supports, and what happens after high school? So many worries, uncertainties, and questions. You can read about it in our homepage.

I’ve been going to to school meetings and doctors visits forever with him since my parents’ language barrier. It all piles up and can leave you drained. Not only do I deal all of this “special needs” stuff at home but I work in the field as well and help families through all kinds of situations whether it be at home, school, work, or community. There is so much that goes one and so much to worry about. It can be so hard to keep up especially in a state like ours where funding is so limited. Sometimes work makes me so sad because of certain situations families are going through.

So if you need some encouragement remember:

  • You are not alone
  • You don’t have to fill a certain expectation of what you or your child is supposed to do or accomplish
  • You are enough, even when you feel like you aren’t
  • You don’t have to do everything, ask for help
  • You are perfect, even when you’re not perfect
  • Be forgiving of yourself
  • You deserve to be cared for

One of the first conferences I went to when I started this job was Team Up For Families. A lot of it was about self care for parents and caregivers and how important it was not to burn out. Our last exercise was to write ourselves a letter and send it to ourselves with a list of selfish things to do for ourselves. Soooo… you should do that too. You don’t have to go through the actually process of mailing it out but maybe just create a list of things you want to do for yourself, share it with a friend who will make sure that you actually do them.

Here are some links to give you some encouragement as well:

I always feel weird talking about this to parents because I am not a parent, but here it is!

Guardianship and Supported Decision Making

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

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

Under a continued tutorship Joel:

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

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

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

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

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

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

Supported Decision Making Guide

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

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

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

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

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

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

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

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

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

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

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

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

For more on Supported Decision Making visit: SDM Guide


Accessibility and Inclusion

Yesterday we went to a playground dedication for New Orleans’ first inclusive and accessible playground! How exciting!  So Drew Brees teamed up with Audubon Nature Institute to open up a new inclusive playground. It was funded and planned out by The Brees Family and The Brees Dream Foundation. The playground has play features for children of all abilities. Yes ALL ABILITIES! My heart so full! They have equipment that is wheelchair accessible including a swing. (check out the video below) They also have equipment for those who have sensory needs and visual impairments.

Chances are if you read my blog, you know the struggles and exclusion of our loved ones with disabilities. A lot of times children with disabilities are not thought of when most playground are put in. The equipment does not accommodate them and most people do not realize that the playgrounds are inaccessible because it is not something they think about. Now Joel could play on a regular playground but as he’s gotten older it’s a little weird bringing out to playgrounds. (Even though I think you’re never too old for playgrounds.) At this playground Joel is welcomed with no stares and judgmental glances. And the equipment is big enough for him too!

Inclusion and accessibility is a bigger issue that still needs to be addressed. Inclusion and accessibility are part of human rights that is constantly overlooked. With ADA, there has been many changes but there are still a lot that needs to be made. The idea that all people should take action to freely, openly accommodate people with disabilities by providing ramps and accessible restrooms and many other things, should not be something people debate in my opinion. One big debate going in New Orleans is whether or not to make our street cars accessible. Some people do not want to update them because their historic background. I guess I get it, but at the same time I don’t. Why won’t these people want everyone to enjoy streetcars by making them accessible. Updated them, in my opinion, won’t make them lose their historic background right?

Anyways…. Everything about the event was great! They had a  smores station, hot chocolate (cus even though it was only like 54 degrees, that’s freezing to us!) They had all kinds of yummy food,  a craft table, free gifts, live music and the kids got to play on the new equipment and meet Drew Brees. It was a great time.

Inclusiveness is so important. Our population gets marginalized and left behind too often… It’s great to see things like this happen. One step closer to universal design in NOLA<3








( Where I work :])

Upside Downs

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

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

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

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

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

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

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







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

Religion in my Family and Disability

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

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

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

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

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

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

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

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

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


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

What is autism?

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

What causes autism?

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

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


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


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

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

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


All of this information was taken from: Autism Science Foundation 

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


For today’s post, I decided to share a story of two of the most incredible people I know., Matthew and Joseph! This picture was taken over the summer when they presented a training on self-advocacy with me. Here’s the video if you’re curious: Guichard Twins Self-Advocacy Video

Below is a Facebook post from their wonderful momma! I hope this story touches your heart as much as it touched mine.

“Joseph and Matthew participated in the Louisiana Special Olympics Winter Games March 7-9, 2014 which were held in Baton Rouge. When the Games concluded and we were checking out of our hotel, the boys started with the “I’m hungry” talk. They chose to eat at The Golden Corral in Baton Rouge. We were seated, Joseph beside me, and Matthew across from me.

While we were eating, Matthew quietly wiped his mouth, stood up, and walked past me, away from the food bars. I turned to see where he was going. What I saw scared and stunned me. He was behind a lady, his arms wrapped around her waist, giving her the Heimlich Maneuver. I immediately jumped up and saw the lady spit up liquid and a piece of meat. She said, “I can breathe!”

The whole side of the restaurant started clapping, so Joseph and Matthew were jumping around, fist bumping and hugging the people in the area. The lady, the others at her table, and I were all crying. We asked him how he knew how to do the Heimlich Maneuver. Matthew said he learned it on You Tube.

We finished eating and came home, talking about Matthew saving that lady’s life, that he was a hero.

It occurred to me this morning that I hadn’t even thought of Joseph, or what he could have been doing while all this was happening. I asked him while they were eating breakfast. Joseph told me, “I was praying.”

Joseph is a hero, too.

…Down Syndrome is not some ominous diagnosis to be avoided or eliminated. People with Down Syndrome are wonderful, wise, brave, and loving, and they contribute greatly to this world. With a restaurant filled with people, it took a young man with Down Syndrome to stepin and perform the Heimlich Maneuver on a stranger most likely preventing her demise, while his brother looked on and prayed. I am thankful that we were there at that moment, doing what people with and without Down Syndrome do, helping one another. And I just have to add, I am so blessed to be their Mom!”

These boys are truly the best! I’m so privileged to know them.


Police Brutality and Down Syndrome

I wrote this post last year on Facebook because it was heavy on my heart. I started it off like this, “In honor of Down Syndrome Awareness Month I am making this post because I love someone with Down syndrome and I feel the need to share this. Please tell me again how police brutality isn’t a thing. ( I know not all cops are bad, I know)” And I posted this picture. Police

These words and this topic is still heavy on my heart. Police brutality in general. Writing this wasn’t easy and I know this pictures and their stories are tough, but I think it’s important to talk about it.


This is Ethan. He died over a movie ticket at the hands of police. He really loved the movie Zero Dark Dirty and refused to leave the theater for the next showing because he didn’t understand that he needed to buy another ticket. The cops came in and weren’t patient, got forceful and violent with him. Pinned him to the ground and handcuffed him in the process his trachea was fractured and he died of asphyxiation. They tried to blame it on the paramedic that tried to safe his life.


This is Gilberto, he was walking home when police noticed a bulge on his side ( his colostomy bag) and found it necessary to beat him, handcuff him, and rip off his colostomy bag. Claims they didn’t know he had Down syndrome and thought it was a gun…. really?? One of the cops said that he was not a doctor, therefore he could not have known. Were they blind or deaf?? First off you can see it in his face and second you can hear it in his voice. Yeah he tried to run but come on… he was scared and didn’t understand.


This is Antonio’s father protesting for justice for what was done to his son. Antonio was walking to his parents bakery when also stopped by police, pepper sprayed, beaten, and handcuffed. Why? He had a Hoodie on and looked “suspicious” since they were answering a call about domestic violence. Once again when they stopped him, couldn’t they see it? Couldn’t they hear it?


This is Jeremy who took his moms van out for a ride and his mother trusted the police to bring him home safe. Instead the police that responded to the call ended up shooting at him 3 times nearly killing him. He lied about the threat to his life as seen in the traffic cam video.


This is Juan. He was also walking home when police were responding to a call about robbery and the suspect they were looking for was white and 5’8 when they spotted Juan who is obviously Hispanic has Down syndrome and is 4’11. When he saw the police he began to run home and as soon as he reached his parents in the driveway and hugged his mom the police pulled him away from her tackles him to the ground and as his parents were trying to defend their son and tell the police that Juan had Down syndrome, they pushed his mom to the ground and yelled horrific racial slurs at them like go back to your country and wetbacks. When they finally got him in the back of the police car they came to the realization that he couldn’t be the suspect and realized him and told his parents they were lucky they didn’t shoot him.

We need better police training and accountability. Down syndrome is not a crime neither does it make someone suspicious.

We need to do our part for our loved ones with disabilities as well. We can introduce them to the local police department and getting cards like the one below. Joel was very excited when he got his in the mail. Mostly because the envelope had his name on it and he never received mail. He showed it to everyone in the house. I do see complications in Joel’s case because he won’t be able to verbalize that he is reaching for his wallet or card if he is every stopped by police, it’s something we’ll have to work on. But we’re one step closer to being safer.

I found a non profit based in Florida that creates and sends people with disability a card to help them interact with police and first responders for free!


Stay safe and educated! Happy Down Syndrome Awareness Month!