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.
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:
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!
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:
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.
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:
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?
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
I think all of us in Down Syndrome community know about the whole end of Down syndrome through abortion in Iceland and in other countries. The rate of abortion for babies diagnosed with down syndrome is so high in the U.S as well. In Ohio they may pass a bill making it illegal for mothers to have abortion for babies diagnosed Down syndrome. Here is a quote I found on a mother’s thoughts on it:
“”This bill sends a very clear message, that some disabilities are more worthy of life than others and that one disability — Down syndrome — is the most worthy,” Jane Gerhardt, a woman whose daughter suffers from Down syndrome, testified Tuesday, according to local reports.” Ban on DS Abortions
I am not sure how feel about it but I do agree with this mother. But my big issue with this excerpt is that the journalist says that this woman’s daughter “suffers” from Down syndrome. Suffers? Really? I am so tired of people saying things like that. Here’s another article I found when doing some research on Down syndrome:
“Down’s syndrome, also known as trisomy 21, is one of the most common genetic diseases” A “Scientific” Research Site
Down syndrome is not a disease. Down syndrome is not a disease. Down syndrome is not a disease. Down syndrome is not a disease. Down syndrome is not a disease.
It’s not contagious, people do not suffer from it, it’s not an illness. Although some people with Down syndrome do have other health complications, Down syndrome alone is not a disease. Okay?
During my little research, I found a blog post from one of my favorite people, the Gungors. They have a daughter with Down syndrome and their diagnosis is story is one that I feel is so important for families to read. I know I am not a parent but many times I feel like Joel’s mama and I get so drawn to these kind of stories. You can read their story here: lucette The bible verses they used for comfort is one that I have read a million times but I never read it the way I did in their blog. Psalm 139
Here’s our version of these bible verses for my boy Joel:
For you created his inmost being;
you knit him together in our mother’s womb.
14 I praise you because he is fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 His frame was not hidden from you
when he was made in the secret place,
when he was woven together in the depths of the earth.
16 Your eyes saw his unformed body;
all the days ordained for him were written in your book
before one of them came to be.
This I will keep in mind for all the harsh words I hear or read about Down syndrome. When Someone says something ignorant, even when Joel makes mistakes or can’t do certain things, I will remember this Psalm. Joel is perfect, God made no mistake.
In case you don’t know who the Gungors are, they are musicians and here is their song for their daughter Lucette.
“Your eyes, they opened And love was spoken The tears came tumbling down Your heart was broken The words were spoken The tears came tumbling down And the blind gained sight As we met our light Oh the joy and fight The gift of life Your hands, the creases Your feet, your breathing You’re mine, you’re perfect light And the blind gained sight As we met our light Oh the joy and fight The gift of life I can’t take my eyes off of you oh my Light I can’t take my eyes off of you”
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 :])
.@DrewBrees and his family teamed up with @AudubonNature to open a new inclusive playground. The playground offers play features for children of all abilities, including those with mobility and sensory challenges pic.twitter.com/TAkoa6ReSa
— New Orleans Saints (@Saints) December 12, 2017
Our boy has struggled with hyperthyroidism and pre-diabetes. This means that he really needs to watch what he eats. But he doesn’t understand that. This has led to many fights with him (sometimes he gets physical) because in his eyes, us denying him food is just mean. It is so hard to make him eat healthy or to make him stop eating.
We haven’t been successful with the eating part but we have been sort of successful in getting him active. I mentioned in previous blogs, Joel now rides a bike. We tried taking him regularly to the park to ride his bike but he can’t really do cold weather. He has been sick for the past 3 weeks. Around this time every year he gets a really bad cough due to his asthma. Periodically the cough will get worse and cause him to throw up and what not.
But back to my point. Joel has gotten busy with sports. If you follow us on Instagram, you’ll see his weekly sports and stuff he’s involved in. This has been quite a semester, he had Special Olympics Basketball, Swimming, and Football, then he also had Miracle League Baseball and Crossfit. We tried to keep him busy and now things have slowed down. Which is good for me cus I needed a break. At one point he something going on everyday. Seems like more than it actually was because some weren’t weekly and some lasted a short time.
Since being active, Joel is no longer pre-diabetic. WOOHOO! But he still isn’t where he should be but we’re working on it. Unfortunately, this booger does not listen to us will not work out with us. For some reason, he will only listen to strangers or basically anyone that doesn’t live with him.
Well that’s all.
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😊
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.
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.”
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.
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.
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!
Family is supposed to be your biggest support system, but I have found that this is only somewhat true. Family is weird at times. Ya know, families fight and stuff but they also love each other. It is very much love/hate I think. My family is pretty distant now for the most part and I don’t really know why. Some are very supportive and loving but have also found that some of Joel’s biggest supporters aren’t family.
Example: The picture above is of a family that is basically family. Joel completely loves them and they love him. They are great and I’m so thankful for them. My actual family is distant as I mentioned earlier. A lot of them are great and show love and support for Joel in many ways. But I would like to share an example of one of the time family has not been that great to Joel:
I remember years ago when Joel was maybe about 8 or 9, he was obsessed with his cars. He would always line them all over the house. He knew every time one was moved or missing. Well, some of my cousins came over while Joel’s cars were everywhere and the younger of the bunch that came over was maybe 6-7ish, who we’ll call Rafiki. Well Rafiki ended up taking one of Joel’s cars, ya know, like little boys do. So this led to Joel getting very upset and pointing to Rafiki and then pointing to a car and then pointing to his pocket. (Because Joel couldn’t communicate.) If I remember correctly this led to the moms being tense with each other but they didn’t actually fight. But what I do remember is that my cousins took the situation personal. One of them, who we’ll call Simba, came up to me few days later and flat out said that they didn’t like Joel or my mom anymore. Simba was upset that Joel made such a big deal about the car and he should’ve behaved better because Rafiki was younger.
I remember being shocked and upset but I didn’t say anything. I thought to myself don’t they get it? Joel is different, I was sure they should have known and understanded. Well families fight and get over it all the time, eventually everything was cool. I have a handful of family members that are actually there for Joel and others who are not so much. And that’s okay. Family isn’t always people who are blood related and I’m grateful for the family Joel and I have.
This post is a bit cheesy! Sorry!
I love you so much. You came into my life when I was five years old. I remember being so excited that you were born and I would tell everyone that my mom just had a baby. I didn’t find out that you had Down syndrome until a long time from then. No one ever explained it to me and I don’t even remember how I found out. I know I was around 10 when my sister and I found out about Down syndrome and she took it harder and than me, which could’ve been avoided if someone would’ve explained it to us.
I do not think that you know the effect you have on my life. Everything that I do is literally for you. College and taking care of you was hard. I had to skip class a lot to be with you (and for mom) for medical appointments and stuff. But the struggle was always worth it. You have taught me so me so much. If it weren’t for you I would never be working in the disability community like I’m now.
Joel, you have shaped me to be patient.(even though I can still lose my temper.) You have shaped me into a stronger person. There have been times that you have broken my heart and tested your limits, but love always remains. You have shaped me to be the person I am today.
You have brought so much happiness to my life. Life with you is fun and full of adventures. I love taking you to new places and watching you explore. I love seeing you interact with people and try to hold conversations. You are so friendly and kind to the people you come across. (Especially babies and girls.) I love how you always try to use chop sticks even though you can’t. I love to see you progress in your speech and in other skills. I above all, I just love you! I will continue to fight for you and care for you forever. You are the best part of life. Being your sister is my favorite role in life.
Happy Down Syndrome Awareness Month!