It’s World Down Syndrome DAY!!
I hope everyone is celebrating in some way today. I love seeing the pictures of the crazy socks and heartfelt stories. I am so blessed to be part of the down syndrome community. I know I’ve mentioned a million times how Joel has shaped my life and how proud I am to be his sister, but I can’t say it enough. Joel is everything.
But I wanted to take time and revisit why we still need this day. Why we still need down syndrome awareness. The answer is because there are still people that need to be educated on down syndrome. It is not something to avoid, to fear or to hate. We still have hate crimes, discrimination, insults, memes, derogatory language, and so much hate.
We still see stories like this one:
and like these:
With that being said Down syndrome should be celebrated. I love that the world can honor our loved ones today on 3/21. The day signifies the 3rd copy of the 21st chromosome and this is a great way to spread awareness about this disability. I think in my house everyday is down syndrome day. Life is just so good with Joel and I cannot imagine a world without him. He makes me who I am in more ways than I can even fathom. Happy World Down’s Syndrome Day!!
We’ve been hearing a lot of debate about who can use which restroom because of the
increased awareness of individuals who are transgender. As with many minority groups, they began to advocate for things they found important, one of the most famous being that of their restroom rights. Their advocacy efforts led to policy change in many stores, public areas, and even laws. But, what does this mean for our loved ones with disabilities who require help in the restroom?
I was reading an article written by a concerned mother in Virginia about how the changes in laws referring to individuals who are transgender using the correct restroom affects her son. Her son is ten years old, has severe autism and needs constant supervision. So, like many other families who have children with disabilities, she has to take her son into the women’s restroom for his safety. The article recounts her family’s experiences at the local pool and how un-accepting some people were about her son.
The following is quote of an interaction she had at her local pool after a woman got angry about there being a boy in the women’s locker room:
Upon our return the next day, I found a sign posted at the desk which read in all capital
letters: “CHILDREN OVER 6 YEARS OLD MUST USE THE LOCKER-ROOM OF THEIR
OWN SEX.” I ripped that sign off the desk and drove straight over to our community
association office and said, “If you don’t inform every lifeguard at every pool in Reston, that this is discrimination against the disabled and a violation of federal law, I will have
a discrimination lawsuit against the association faster than you can say not happening.”
I feel her frustration! There will always be intolerant and rude people, although, I have never experienced this much negativity.
I have experienced glares and whispered comments when I take my brother into the
restroom with me. But I will continuously take my brother into the women’s restroom because I value his safety and his comfort over anyone else’s comfort. Like this mother put it, “If he still requires my supervision at age 35 or 65, that’s where I am taking him. I refuse to put my son in jeopardy for someone else’s comfort.”
We let Joel go in the male public restrooms when we have a trusted male with us who is capable of keeping an eye on Joel while letting him use the toilet/urinal independently. Joel very much feels that he is grown 18 year old who does not need to go to the women’s restroom and will often walk into the men’s room before we can lead him to the women’s restroom with us. We do want him to exert his independence but safety is our number one concern.( I may have read one too many stories of strangers abusing individuals with developmental delays in public restrooms.) Thankfully we often have a trusted male with us to help us out by walking in with Joel and waiting for him. He usually is well behaved and clean in bathrooms, but when he makes a mess he MAKES A MESS and it is not pretty. This happens when he is sick or has held in the urge to use it for too long. And thankfully that has not happened in public restrooms in a while. I am so very thankful to the fellas in our lives who love Joel and do not mind being there for him when societal norms do not allow us to.
There are many fears about letting your little ones go to the restroom on their own, but those fears are multiplied when we’re talking about someone with disabilities. There is a multitude of reason why letting them go to the bathroom is scary, for example:
2. Getting lost/ Wandering
3. Having Accidents
4. Getting their #1 or #2 everywhere but the toilet!
5. Mean People
6. Inappropriate behavior
The list can go on, but you see my point. Why should we risk any of these things when we
know that if we take them into the restroom with us, these things can be avoided. Whether it is the parents, siblings or caretakers of the opposite sex, we need to stand our ground. We will not risk our loved ones’ safety for the comfort of others. The gender issue and restrooms is not just about transgender rights but also but those of our loved ones with disabilities. People who feel uncomfortable about someone who does not look like them lack compassion and a community mindset. These people most likely mean no harm they are just not exposed enough to people who look or act differently from them. Fear of the unknown is a major contributor to the way they feel and think. Hopefully they can open their minds and live with compassion rather than fear. Everyone needs a restroom where they feel comfortable and belong.
To read the full article mentioned follow this link:
For more on the war of the restrooms follow these links:
If you’re here chances are you know what an IEP is. Individualized Education Program. In case you don’t know, I work at my state’s Parent Information and Training Center. Find yours here. I work with families daily on IEPs, special education, and all disability related things. If you have never heard of one of these centers, I encourage you to call and ask for help and support if needed. In this post I decided to share some information I give to families all the time on IEPs so bare with me if its boring or too structured. Most of this is taken from presentations I do and the websites listed at the end.
The purpose of an IEP is to set reasonable learning goals for a child, and to state the services that the school district will provide for the child. Each child’s IEP must contain specific information, as listed within IDEA, Individuals with Disabilities Education Act. This is a federal law binding in all states. State law can mandate more protection than IDEA but not less. Each state uses different criteria to determine programs and guidelines for qualifying students for special education.
An IEP meeting must be held within 30 calendar days after it is determined by a full and individual evaluation that the child has one of the disabilities listed in IDEA and needs special education and related services. A child’s IEP must also be reviewed at least annually thereafter to determine whether the annual goals are being achieved and must be revised as appropriate. The team may meet before the anniversary date to make amendments at any point and it will not replace the annual IEP meeting date.
It is allowed for the IEP team to bring a draft of the IEP but a discussion and explanation of changes still needs to happen. If the IEP team chooses to use a draft IEP, the team must ensure that the parents understand that the document is a draft, and is not set in stone. If the IEP team uses a draft IEP, they should provide a copy of the draft document to the parents well in advance of the IEP meeting. The parents must have enough time to give careful consideration to the recommendations in the draft IEP.
Parental consent is required to provide services defined in the IEP.
IDEA states that, as soon as possible following development of the IEP, special education and related services are made available to the child in accordance with the child’s IEP. But, it does not give a specific amount of time between finishing development of the IEP and beginning the services described in the IEP. The only exception is if the meeting occurs during a school vacation or when arrangement of services such as transportation are involved.
IDEA also requires that the school system ensure that each regular/special education teacher, related services provider and any other service provider who is responsible for the IEP’s implementation:
An IEP team member can be excused for all or part of IEP meetings if parents and IEP team agree in writing his/her presence is not necessary and because their expertise is not going to be discussed or modified at the meeting. IEP can be developed via alternative means to a face-to-face meeting if parents and school agree like a phone conference.
If parents or the school want to amend or modify the IEP, the team does not have to physically meet. IEP teams have the option of drafting a written amendment to the IEP, agreeing to the amendment and incorporating this modification into the IEP plan. However, before the IEP team can use this new alternative to gathering in person specific conditions must be met.
Parents or guardians
Special education teacher
General education teacher
School district representative (ODR) that can commit district resources
Person(s) who can interpret evaluation results
Related services providers
Student – required at age 14
Transition services personnel
The PLAAFP statement is a key part of your child’s IEP. The very first PLAAFP for your child describes his skills and abilities based on his initial special education evaluation. The PLAAFP should cover all areas of development where your child may need support. Some examples are:
The purpose of the PLAAFP is to identify the kinds and amount of special education services your child may need. In other words, you and the rest of the team will talk about the impact your child’s disability has on his ability to learn and do the kinds of things that children without disabilities learn and do. This information is then included in his IEP.
Measurable annual goals are statements that describe what a child current level and can reasonably be expected to accomplish within a 12-month period in the child’s education program. There should be a direct relationship between the measurable annual goals and the needs identified in the PLAAFP.
Let’s start with IDEA’s full requirement for specifying a child’s related services in his or her IEP. Each child’s IEP must contain the following:
A statement of the special education and related services and supplementary aids and services, based on peer-reviewed research to the extent practicable, to be provided to the child, or on behalf of the child, and a statement of the program modifications or supports for school personnel that will be provided to enable the child to the following:
LRE is part of the Individuals with Disabilities Education Act. IDEA says that children who receive special education should learn in the least restrictive environment. This means they should spend as much time as possible with peers who do not receive special education this includes extra extracurricular activities. IDEA says two things about LRE that are important to understand when working with the IEP team:
While in the regular class accommodations and/or modifications are use in the regular curriculum. When modifications are made, kids with disabilities are not expected to master the same academic content as others in the classroom. With accommodations adjustments students have equal access to curriculum in a successful way. (I’ll go into more detail about the differences between the two in another post)
If child is moved to a self contained class it is only decided if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. An IEP must happen to make changes in placement.
IDEA requires a transition plan when a student has a disability. Transition services are intended to prepare students to move from the world of school to the world of adulthood beginning during high. Transition planning takes place as part of developing the student’s Individualized Education Program at the age of 14 or younger if determined appropriate by the IEP Team. The student must be invited to any IEP meeting where post-secondary goals and transition services needed to reach those goals will be considered. (Every student regardless of disability can participate in their own IEP in some way, and at any age although they should be invited by 14. Participation can look different for each student. I’ll make a post just on this soon.)
This plan is to help students prepare for life after school, focus on post-secondary education, training, employment, & independent living. As you can see the areas to explore by the IEP team to determine what types of transition-related support and services the student with a disability will need. It’s easy to see how planning ahead in each of these areas, and developing goal statements and corresponding services for the student can greatly assist that student in preparing for life after high school.
Another component of the IEP that IDEA requires is specifying how the child’s progress will be measured. This statement flows naturally out of the annual goals written for the child which must be measurable. Schools have to report to you with a IEP Progress Report periodically. This gives parents, and other members of the IEP team the opportunity to review the IEP and make adjustments if they are warranted. When a child does not make the progress expected, then it’s essential to determine why and take corrective action.
Expect IEP progress report four times a year when report cards are given out to all students. If you don’t get one ask for it, it is your right!
Prior Written Notice should be given to parents and all IEP participants in their preferred language even if their language is not a written language. Also it should be given within a reasonable time before the school or local education agency proposes or refuses:
Federal and/or state special education laws and regulations do not define what would be deemed as a reasonable time. However parents can stay a step ahead by highlighting their child’s anniversary date for both the triennial evaluation and annual review meeting dates as listed on the IEP. This is key as oftentimes, the anniversary date may cover an extended school holiday.
There is no regulation that says you must sign the IEP immediately at the end of the meeting, or at all. If you feel the need to wait before signing the IEP, if you need to “sleep on it” or share it with your spouse/child’s tutor/consultant, say so. You may wish to list specific items in the IEP that you want to think about before signing (“I’m still uncomfortable with ____, and I’d like to think about it some more”). This lets the school know where you stand and gives everyone time to think of possible solutions or compromises.
Whatever you decide, read the IEP document in its final version before signing. This is also a good time to review the list of concerns you prepared before the IEP meeting. Did the team talk about all of those items? When all the talking is done, if you are comfortable with the IEP, go ahead and sign. If you agree with everything except one item, you can sign your agreement and add a statement about the one item you disagree with. The team can implement all of the IEP except that one item, until you do resolve it.
As the parent of a child with disabilities, you are a valuable member of your child’s Individualized Education Program (IEP) team. You have knowledge about your child from which school personnel and other IEP team members will benefit. Likewise, they have information and professional perspectives that will help you understand your child’s educational program. The following questions can help you gather information from others and be an effective member of the IEP team.
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!
In case you don’t know what ableism is, it’s discrimination against people with disabilities. Whether it is intentional or not. It can look like typical discrimination expression like hate for people with disabilities and rejection of disabled applicants for housing and jobs. Or it can look more complicated like the denial of accessibility, institutionalized discrimination in the form of benefits systems designed to keep people with disabilities in poverty, etc.
Take this video for example, ablesim due to the denial of accessibility:
Ableism can also be the belief that people with disabilities need to be fixed or healed, and cannot fully function as members of our society. These assumptions make some members our society view people with disabilities as being abnormal and part of a distant other instead of minorities within our same society. I realize that abelism can be deliberate or accidental but that still does not make it okay. I found this twitter post when I was researching this topic and I think it perfectly explains ableism.
Not too long ago a man in Japan acted on his ableist ideology and committed Japan’s worst mass murder. A man who claimed he wanted to kill disabled people left at least 19 dead and 26 others injured after a knife attack at a care facility in Japan. A mercy killing.
It was the country’s worst mass killing in decades. “I did it,” the 26-year-old former employee of the facility was quoted as saying. “It is better that disabled people disappear,” he was said to have added. He was carrying a bag full of knives and other sharp-edged tools, some of which were bloodstained, when he handed himself in. Nine women and 10 men were killed. They ranged in age from 18 to 70.
He tied up staff members and asked them where people with severe impairments were accommodated in the facility, investigative sources said. Shortly after his arrest, Uematsu allegedly told police that he wanted to “save” those with multiple disabilities and felt “no remorse” for what he did. He reportedly told others before the rampage that “disabled people create misfortune” and that he “wanted to euthanize them.”
Masayuki Okahara, professor of sociology at Keio University, said, “I cannot accept the defendant’s claims. But against the background of the case may be society’s intolerance toward its most vulnerable members. “There is a general sense that we should not discuss the incident. Society has accepted disabled people only in the context of heartwarming stories,” he said.
“But we should first understand the reality of seriously impaired people. We should create an environment in which such people and their families can feel acceptance and freely go out in society.” Japan Times
If you can, read this blog post: “I don’t see myself without my disability” It’s a good read about acceptance of disability. The closes the post with this: “When we dream about a better more inclusive reality, we shouldn’t show the status quo and suggest that people who don’t usually fit in should have that too. We should show a world where they actually do.”
We should be providing supports and encouragement to people with disabilities to help them live the life they want. We should not push them and their dreams aside or try to erase their disability.
Abelism kills. It kills dreams, opportunities, acceptance and many times it can literally kill people.
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.
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”