Shouting Joel’s Worth

We’re FAMOUS!

Just kidding! But we did make our local Telemundo news station… at 10pm… when no one’s watching…

I was called by one of the reporters who also works as a PCA for one of our friends who also has down syndrome. She expressed that she wanted to do a story on us because she spends a lot of time with our mutual friend out in the community and at “special needs” events and has never seen another Hispanic. So her question was why? I think it is evident that there are still people who are ashamed of disability and/or have a stigma that just can’t be shaken. This is especially true about the Hispanic community. From my experience, it’s not often talked about.

So, she was told about us and after viewing our blog she decided we’d make a good interview. When she called she said she wanted us to share how life with Joel is and share about things Joel is involved. Basically wanting us to encourage other Hispanic families to not be ashamed and to show them there is so much they could be doing. she ending sending me questions about my role as a sibling (specifically in terms of his education,)  why I made a blog, what my reaction was to find out he has ds, and what I’d like the Hispanic community to know.

The idea was to get the whole family. My parents immediately said no and my sister was to busy. I came home the day of the interview and my parents were definitely dressed like they were going to be interviewed but kept insisting that they were not going to participate. After my interview was over the interviewer asked if they were anything else I wanted to share if I felt like I left anything out. To this, my dad had a lot of input. So the interviewer asked him a few more times if my parents wanted to be interviewed. They finally gave in. It was very cute, I felt like a proud mama.

My parents rarely talk about important stuff outside of like church related things. I believe I’ve expressed in previous posts my disappointment about my parents never really explaining down syndrome to me and how I have sort of resented their silence at comments others have made about down syndrome. Again, I blame this on their upbringing, being from another country and all that. But I was so proud that they finally decided to speak up. (not saying that they never defended Joel or never spoke up about down syndrome, but from my perspective, I never witnessed it enough.)

This was a first for me. To see my parents vulnerably speaking about how hard it was at first. I never heard Joels’ diagnosis story until now. My dad always says Joel is what saved him. I may share that story later on…

Joel’s diagnosis story:

My mother is a quiet one. When I’ve asked her questions about this, I get one-worded responses. I can’t get mad because I am exactly the same… Just about different things. She and I see down syndrome differently. It’s something I’ve always known. But for her, Down syndrome came to her as a surprise, and not necessarily a good at the time. Something she probably thought would never change her life and affect her every day.

She said her OBGYN was concerned because Joel was too small and thought there be something going on. They wanted to an amniocentesis. My mom thought about it and talked to a friend who advised her not to because she was afraid it could lead to a miscarriage. She told her that it would not matter how he came or what he came with because she knew my mom would care for him and love him either way.  So my mom did not go for it.

When he was born they told her immediately. Although she did not get the formal diagnosis until he was three months. (I know this from snooping old paperwork.)  She said he didn’t cry and weighed 2 pounds. He was so tiny and fragile. She admitted to feeling I guess anguished would be the best translation of the word she used in Spanish. She went on to say it was new and confusing. Both my parents reflected on how hard it was for them especially not really understanding the English completely. My dad also admitted they rejected some help and resources at first not really knowing why; could’ve been pride or refusing to accept it. I’m so glad they ended up in the interview as well.

Anyway,  a lot of the interview was cutoff of course. I like the parts where I shared the most important things did not make it but that’s okay. Hopefully, we were able to spread awareness for down syndrome and encourage those in the Hispanic community to branch out and look for support as well as getting involved in the community. The key take away was to not hide or be ashamed of anyone in the family with down syndrome and to look for help and support because it’s out there.

Here’s the video, it doesn’t get to us until like minute 11:45ish:

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Family Support

A supportive family makes all the difference, along with early intervention. I want to share something that may be offensive and it’s not my intention to do so but I think it’s important.

There’s someone I’ve worked with who we’ll call Minnie. Minnie has down syndrome, is non-verbal, and she’s also dealing with the effects of ageing. I love seeing her and working with her but she’s very mean and aggressive. She is very delayed and does not possess many skills at all. Nothing seems to amuse her except combing her old teddy bear and pacing the halls. She barely sleeps and doesn’t let anyone touch her.

Minnie comes from a family that did not provide the appropriate supports for her growing up. Whatever the reason was, I don’t know… negligence, ignorance, fear, who knows. But I do know that if she would have had interventions, things would be different.

She currently lives alone with staff constantly changing and minimum visits from family. Staff isn’t always the nicest and can be lazy. The house is in bad repair and tiny. She rarely goes out. The family drives away good staff and is always stopping her from getting services and refuses doctor visits and treatments. She did not get much of an education. But I do not doubt that she is loved.

Minnie’s family is not super involved but the involvement they do have is misguided. Ultimately the choices that are have been made for Minnie and continue to be made just cause more harm than good. I’m sure that the family loves her and want the best, but what is best? I’m not saying I’m an expert or that I know best… but here are my thoughts.

  1. Seclusion is the worst
  2. Intervention is important
  3. Family support is everything

Now Minnie’s parents are not alive and she has a lot of siblings who take turns visiting her. As a sibling myself, I cannot imagine being the kind of sibling that leaves them behind like that. I know all families are different and there definitely are families that really can’t take care of someone with a disability… but I just can’t imagine thinking that Joel is better off living away from us and that strangers can take care of him better than we can. I love him so much.

In today’s day in age with so many studies and advocacy work, I feel like there is no excuse to think seclusion is best practice or to send people like Minnie and Joel away. But it still happens… a lot.

Minnie’s life is honestly sad to me and it’s not her fault at all. She grew up in a time where institutionalizing was the norm and schools were not required to teach students with disabilities. Her family was not educated about inclusion, ADA, and all that good stuff. We are still dealing with the remnants of the generation before IDEA and most of those families have no idea how to deal take care of their loved one with a disability… then add the effects of ageing too. Thank goodness things have changed and continue to change for the better.

Saving down syndrome is an ongoing task and we will not stop shouting their worth!

Regression?

I wanna say Joel was 10 years old in the picture. So about 8 years ago. So little. So precious. So long ago. I miss this little booger.

So Joel seems to be reverting back to some problem behaviors and also picking some up.

He has been more aggressive. Back in his early teen years, Joel was violent with us. He hit, bit, threw chairs, and cursed. He has been calmer in the last few years. He hasn’t bitten anyone recently nor has he thrown chairs or something. But, just like anyone he does get mad gets loud with us and occasionally throw something at the wall. But my point is this: Is he regressing?

Although he’s not as violent as he used to be, his behavior seems to be going in that direction. I know that I’ve mentioned his twitching before. My sister and I are no experts but we think his twitching is a behavioral thing. He tends to do it when he is annoyed or sometimes it seems randomly. The twitching he does can seem scary to outsiders. I’ve been asked if he’s having a seizure, if he’s okay, what’s going on when he does it in public and it makes it worse when people stare. We’ve asked his doctor about it they dismissed it and said basically it is because of down syndrome. I’ve been wanting to get a second opinion but there’s only so much influence I have in that department.

Anyway, I guess he’s been doing that a lot more in school now and his teacher is very concerned about it. We’re used to it because he does it a lot and has been doing it for years. But it has become more frequent, so is this a sign of regression?

He does seem to have to become more aggressive. Again is this regression? Possibly. His behavior wasn’t 100% but it has become a little more like when he was in his younger teens. He is starting to throw things and yell more along with cursing. Although he isn’t really being violent to others like he used to, we’ve noticed that he’ll slap himself. Which is definitely not good either.

Also, another area of concern is Joel’s accidents. He has been pooping his pants and elsewhere way more frequently than he used. I actually recently wrote a blog post about it. It used to be like once every few months and now it is happening at least once a week. To me, this is more clearly a sign of regression but I’m no expert here.

Have any you dealt with regression? What to do, what to do…

Sometimes, It Gets Crappy

See that beautiful face in the picture? See how adorable he is? Keep that in mind when reading this post!

Living and caring for Joel means that sometimes, you will have to put up with his crap. I mean literally. Literal crap… poo-poo.

He used to have way more frequent accidents when was younger, and naturally, as he got older, he got better.  I’ve mentioned in previous posts, about how it took so long to potty train him and how my mom had to go to the school a lot to change him or pick him after an accident.

Thankfully, the last time he had an accident in school I believe he was in 6th grade. I remember going with my mom to pick him up from school that day and he looked so sad and alone in the office. My poor little one. Knowing what I know, I would’ve argued about the para or nurse not cleaning him up. You’d think that if they go into this field they’d know or at least be kind enough to clean up our loved ones up after accidents but… NO!

The point I want to get, however, is the messes Joel leaves at home. Although I would say that, technically, he hasn’t had a real accident in years, he has had messes. My definition of accident is him pooping in his pants nowhere near the toilet. I don’t count it as an accident if he’s trying to get tot he toilet. To me, the terminology is important because I want him to know he’s doing a great job and not to focus on accidents.  He truly does get very disappointed in himself and cries. And if I get mad at him for his “almost making its” and/or his accidents, it makes it worse. He’ll not only cry but get angry and throw things or hit.

If you are easily grossed out, stop reading here! I’m serious, it gets gross!

Almost Making It

One night about 2 years ago I woke up to Joel silently calling me from the bathroom. Who knows how long he had been calling me, but when I finally got there was a trail of poop on the carpet from his room leading to the bathroom. When I got in the bathroom He was desperately trying to clean up the mess he had left and trying to clean himself in the shower. He was obviously sick and didn’t make it to the toilet. Unfortunately, he made it everywhere else. There was poop all over the toilet bowl dripping unto the floor, poop on the shower curtain, bathroom rugs, towels, and the bathtub. It was such a horrific crime scene. I did get mad at first and yelled and even threatened to go get the parents instead. But after seeing him cry and his efforts to clean it up, I felt bad and woke my sister up to help me clean everything and bathe him. After getting the bathroom and Joel settle I cleaned the trail he left behind and checked his room and bed for more poop. Sure enough, there was more cleaning to do.

This was definitely the worst it has ever been.

Usually, he may have a mess like once or twice a month that is nothing like the one I just mentioned. That was just horrific. Usually its a few drops of poop on the bathroom floor or on unusual spots on the toilet. Occasionally he’ll leave a trail from his bed to the bathroom but that’s rare. It’s all still really gross. We still have to check his booty after he uses it because he doesn’t always do a good job of cleaning himself. It’s gotten harder to help him because he wants to be independent and doesn’t want to let us in the bathroom. Which is completely understandable but I’d rather check him and clean him if needed than for him to get a rash or boils and be stinky.

It’s a struggle, but anything for my boy. Sorry, this was a gross post!! We’re here to share the good, the inspiring, and the crappy of life with down syndrome. Hopefully, at some point, we’ll reach full dependency in the bathroom. Until then, we’ll it take it as it goes.

 

Summer Adventures

First off… HAPPY 4th of JULY!!

Joel has had quite a busy summer. Starting with his graduation, prom, parties… Joel has been having a great time. Earlier last month he went on his annual trip to Lion’s Camp! Sadly I do not have pictures of his trip because he goes off on his own. We used to pack him a disposable camera but all the pictures would come out bad or the camera wouldn’t even be used. Its a whole week of fun and no parents, Joel always comes back so happy. When I ask him what he did, all he tells me is a list of the food he’s eaten. He’s like; “uh chicken, pizza, uh hot dogs.” As soon as comes home, he unpacks and shows all his goodies and crafts. The week is so fun for him but we miss him terribly at home.

After this trip, he had one day to rest and then we were off to our first family trip to the motherland (El Salvador)  in 20 years. This was Joel’s first time out of the country.  He gets excited and nervous flying and is too self-conscious to make noise. An example of this is that even though he has earphones on, he’ll the volume on his IPad really low and looks around a lot to make sure he is not bothering anyone. He packed his UNO cards and his memory card game but he didn’t want to play with anything. He barely even wanted to play with his IPad. He was more nervous than he has previously been on plane rides. But he was more himself after the food came.

Overall the trip was good but Joel had his moments. He constantly asked for my dad who did not go on the trip with us. He asked to call him a lot and got made very easily. Joel does this thing a lot where he sort of fitches and shakes his head and it almost looks uncontrollable or like he just does it out of instinct whenever he is uncomfortable and annoyed at something. Well on the trip he did it wayyyyy more often and waaayyyyyy more aggressively. A lot of the times when he did it, it was like he did i out of nowhere. Usually, when he does this at home, we can tell its because someone stared at him or someone did something he doesn’t like or whatever. But on the trip, it constantly happend out of the blue. Everyone’s theory is because he was hot and too many bugs. Well, we live in Louisiana where there are bugs all the time and it is so hot here too. Although almost no one has AC in El Salvador, which could have contributed to his annoyance, I think he just wanted to be home.

While on the trip Joel met our cousin, Jose, who also has down syndrome. My mom has been wanting these to meet forever and she finally got her to wish. Jose is 27 and so funny. Well, Joel is too. They both have very limited communication and are super adorable. Although I think Jose is nicer, who knows how he’d act if I actually led with him. haha… Everyone thinks Joel is nice but when you live with him or spend a lot of time with him you’ll see his mean and aggressive side.

Overall it was a great trip and Joel had fun. Let’s see what the rest of his summer holds.

 

Graduation?

If you follow us on social media, then you probably know Joel attended his first regular high school prom and he attended his graduation! Woo-hoo!

Prom:

Joel is an amazing dancer and loves going to shindings, but we have never let him venture out on his own. He’s gone to special needs proms and dances but my sister and I have always gone with him. I know… I know… special needs proms? What about inclusiveness?!?! Look, I’m all for inclusion, I really am but I’m also for Joel having a good time. Joel loves going to special needs proms and I won’t stop him from going for the sake of inclusion. With that said, he technically wasn’t on his own because his teacher accompanied him with a few of his classmates but nonetheless, he was free to do what he wanted. Which can be scary. What if does something inappropriate? What if someone does something inappropriate to him? What is he gets lost? What if the other kids are mean?

But it turned out great. Our family gets nervous about letting go off on his own especially because he’s considered non-verbal so he can’t tell us if something happened. He’s also very friendly and can easily be persuaded do something he shouldn’t. He does things on his own here and there and finally, Joel got to experience his first real prom. He even made our local news:

Graduation:

Joel is 18 and this was his senior year, but he can and will go back to high school for at most another four years. WHAT?!?! How??! Let me explain; so Joel is not on a diploma track. This means when he walked across stage he got what is called is a certificate of attendance. He can stay until he’s 22. Some people ask why, why doesn’t he just leave after his actual senior year like everyone else. Well, because simply put, we don’t have the money to provide him with the services and resources he is entitled to while still in the public school setting. There are some vocational programs we’d like to get him into as well but it’s expensive.

As I’ve mentioned before, Joel is on a waiting list for a waiver that would be able to provide those services to him but the waiting list is about 14 years long. Although Louisiana has changed it to need-based, one still needs a score of a 4 or 3 to get services now otherwise your back on the waiting list. Joel was given a score of 1.  4 = critical, 1= planning (he doesn’t need anything right now apparently – *insert eye roll here*.) This is a whole nother story; I’ll get into this in more detail in another post.  (Side note: this is why we have our shop)

So did Joel really graduate? I guess not, but he walked across the stage and loved it. We decided to let him walk across the stage this year because this would be his exiting year if he were a typical student. Ya know, why not complete the senior year experience for him now with the schoolmates he’s been with forever.

BEHOLD:

You can tell he was a little nervous before the ceremony but look at his sweet smile afterward.

Joel has always wanted a waterslide for his birthday, but his birthday is too cold. So after his graduation, we decided to throw him a water slide party.

Sheltered Workshops

I’m not sure how familiar everyone is on sheltered workshops. Simply put, sheltered workshops are a supervised workplace for adults with intellectual disabilities, where the are trained and employed separately from everyone else. People who work in sheltered workshops are typically paid well below minimum wage.

The disability community seemed to be divided on whether sheltered workshops should all close down and then there are those who believe in sheltered workshops and would hate to see them closed down. I am not 100% sure where I stand.  Here’s why:

According to some people, if sheltered workshops close down, many people with disabilities will have no where to go. They may end up up at home or in a some kind of day program. (Which isn’t necessarily bad) Daphne Pickert, who runs a disability service provider in New York, says that ending them removes an option for people who may never be ready for an outside job. She went on to say, “For some people, because of their actual diagnosis and disability, they need the support of the workshop,” she says, “And they literally cannot perform in a competitive setting.”

So I get that it gives them something to do. They have a place to go and I’m sure there  are good number of them enjoy what they do at the sheltered workshop. But are they being exploited? A lot of people think so and are fighting to close down all sheltered workshops. Many states have been moving towards shutting them down. There are fewer and fewer sheltered workshops around. So where do these people go once their sheltered workshop closes down? The idea is that they’ll go through a supported employment program and eventually get a competitive employment. As mentioned before, what about those who may never be ready for employment?

If you haven’t seen this documentary called Bottom Dollars, please watch it. Here’s an excerpt from their website:

“How would you like to work for two weeks, and come out with a $6 check?” That’s the reality for almost 250,000 Americans with disabilities who are paid below the minimum wage. This film exposes this exploitative system and offers solutions to end segregation and discrimination against workers with disabilities.

Bottom Dollars exposes the exploitation of nearly 250,000 people with disabilities in the U.S. that are legally being paid less than the minimum wage, on average, less than $2 an hour. The documentary calls for the phase out of this unfair practice of sub-minimum wages and sheltered workshops, and offers solutions for fair wages and inclusive employment.

“Investigations by the National Disability Rights Network have found that hundreds of thousands of people with disabilities are being segregated and financially exploited in the workplace due to unfair and antiquated labor laws,” said NDRN Executive Director Curt Decker. “In this important documentary, we hear in their own words how this outdated practice harms workers with disabilities and keeps them from reaching their full potential. Their stories are a reminder that we must continue working to end segregated work and the sub-minimum wage.”

“Now is the time to end this antiquated and downright insulting exception to minimum wage laws,” said David Carlson, Executive Producer of Bottom Dollars and Director of Legal Advocacy at Disability Rights Washington. “The exception was written in a bygone era, long before children with disabilities were allowed to go to school to get an education and marketable skills, long before state and federal anti-discrimination laws protected employees with disabilities from discrimination, and long ‎before multiple state and federal programs were created to support people with disabilities secure and keep meaningful employment. Nothing short of fully repealing this exception is acceptable and I hope this film helps people see how flawed the assumptions underlying this exception are.”

The goal of Bottom Dollars is to empower advocates and policymakers to provide workers with disabilities the basic protection of a minimum wage.

The documentary features personal stories and expert interviews from around the country. Expert appearances include the National Disability Rights Network’s Senior Disability Advocacy Specialist Cheryl Bates-Harris, National Federation of the Blind President Mark Riccobono and Director of Advocacy of the Center for Disability Rights Stephanie Woodward, among others.

“Working in an integrated setting opens up people minds about people with disabilities and what they can do,” said Le’Ron Jackson who used to work in a sheltered workshop, “For me, it has been life changing because I feel like I’m a part of society and the working American public versus when I was in the workshop, I felt like a nobody.”

 

http://www.rootedinrights.org/videos/employment/bottom-dollars/ You can learn more about the film using this link. Pictured above are some of the people who the film follows.

Let’s talk about Goodwill for a bit.

A Goodwill CEO who is blind makes a 6 figure salary, yet he thinks its okay to pay other individuals with disabilities working at Goodwill as low as two cents an hour wage. Their average employee with a disability makes $2.00 an hour and some as low as 2 cents an hour. Depending on what state you’re located. How is this possible if there is a minimum wage law? It’s due to a 75-year-old legal loophole where companies/nonprofits can apply for a special wage certificate. This loophole makes it perfectly legal to exploited people with disabilities through sheltered workshops.

The following excerpt was taken from this article which you should read: http://www.ocalapost.com/goodwill-taking-advantage-disabled/

“If they really do pay the CEO of Goodwill three-quarters of a million dollars, they certainly can pay me more than they’re paying,” said Harold Leigland, who is legally blind and hangs clothes at a Goodwill for less than minimum wage.

“It’s a question of civil rights,” added his wife, Sheila, blind from birth, who quit her job at the same Goodwill store when her already low wage was cut further. “I feel like a second-class citizen. And I hate it.”

Section 14 (c) of the Fair Labor Standards Act, which was passed in 1938, allows employers to obtain special minimum wage certificates from the Department of Labor. The certificates give employers the right to pay disabled workers according to their abilities, with no bottom limit to the wage.

Most, but not all, special wage certificates are held by nonprofit organizations like Goodwill who then set up their own so-called “sheltered workshops” for disabled employees, where employees typically perform manual tasks like hanging clothes or separating clothes hangers.

Supposedly some Goodwills are working to change this and a few have but overall as a whole, goodwill has some work to do.  all of this is the dark side of sheltered workshops. Through my work, I have met a lot of families that have put their loved ones with disabilities in sheltered workshops and they love it. They don’t mind the pay if any, as long as their loved one has a place to go and enjoys it. I don’t know. This is where I’m torn. Overall I think that sheltered workshop are negative because our loved ones deserve a fair pay and should have the chance to get a competitive job. For those that can’t get a competitive job, we need better day programs and options. Sooo… I guess I do know where I stand.

What would I want for Joel? Honestly my parents and I sort of hit a roadblock when we discuss this. My parents are extremely fearful for his safety since he is nonverbal. I want him to go through a vocational program and get supported employment. I think he’d do okay with a job a few hours a week and when he’s not at work maybe go to a day program. My parents are leaning more towards just a day program. I still have time a few years to convince them.

Although here in Louisiana, vocational rehab doesn’t start until the last two years of high school, at home we have started our own training. The sooner we start, the more practice we get in and Joel can be more prepared for his future. Most of you know we have been teaching Joel to make soaps, candles and more at home which we then sell at art markets in New Orleans. Joel has potential and I think that most people with disabilities do if given the chance. They deserve to live a meaningful as full participants in our society.

Like They Know What Love Is

I recently had an encounter with Joel’s principal that left me a little shocked. My mom and I were waiting in the office for Joel’s IEP and the principal saw us and started a conversation. She recognized us and started talking to us about Joel and his girlfriend, we’ll call Princess Peach. Princess Peach and Joel are such a funny couple. She shows more affection and constantly sends home notes, drawings, and gifts for Joel. For the longest Joel would deny their relationship and now most days he says yes when asked if Princess Peach is his girlfriend. They have known each other since elementary school but were separated in middle school only to reunite in high school. It was written in the stars!pexels-photo-326612.jpeg

Many times when other school staff see us they’ll comment to us about this relationship like how funny they are or cute they are. But no one said anything demeaning until our a little bump in to his principal. Here’s the conversation:

P: Y’all here for Joel huh?

Me: Yep, it’s his IEP meeting day.

P: Joel is something else! I see him all the time in the halls with his girlfriend. Y’all knew about Princess Peach right?

Me: Yeah, they are so funny, Joel gotta learn some manners though. He’ll only claim her on good days.

P: Yeah, I see them holding hands, he’ll have his arm around her. This was followed by a laugh and the following statement that ruined the conversation: Like they know what love is!

Me: Just like any other teenager right?

P: Yeah but you know because of who they are:

Me: *stares blankly*

P: Okay, awkward silence, backs away and shifts her glance, then she leaves.

What kind of statement is that? What does their disability have to do with their ability to love. I might agree teens in general may not know what love is but not really because I met my boyfriend 5 years ago in high school and we’ve been together ever since…

Like they know what love is…

ds couple

Like they know what love is…

ds couple 2

Like they know what love is…

ds couple 3

Like they know what love is…

ds couple 1

You can’t tell me that people with cognitive/intellectual/developmental disabilities do not know what love is. It may not look the same but they can certainly love. I found an article on this topic and here’s what stuck out the most to me:

“The capacity for people with developmental disabilities to live full, rich lives is often underestimated,” says The Arc San Francisco CEO Dr. Glenn Motola, “but love is found across the entire spectrum of  the human experience and includes us all, people with disabilities and people without disabilities.” Read the whole story below:

https://blog.sfgate.com/lshumaker/2013/02/07/love-relationships-and-people-with-developmental-disabilities-a-valentine-story/

I found a study on love and people with intellectual disabilities and I think that it is very interesting and worth your time.

“According to the findings of this study, the young adults with ID understand love very concretely. One of the most important findings was how positively they all perceived love and its importance in their lives. Love was considered important and valuable to themselves and to people in general as it was recognized as a crucial element of well-being.” I encourage you to at least read the results and summary of this study using the link below.

https://www.tandfonline.com/doi/full/10.1080/02673843.2016.1167749

People have this misconception that people with disabilities do not love the same or even want the same kind of relationship that people without disabilities have. The truth is many of them want to have relationships and most never learn how to do in a healthy way which can lead to some serious problems. Don’t leave them out o the conversation about these topics.

Happy World Down Syndrome Day

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:

Kentucky

They neglected and and starved their 20 yr old son with ds to death

http://www.wdrb.com/story/37606012/police-say-down-syndrome-man-in-winchester-had-no-food-in-his-stomach-when-he-was-found-dead

and like these:Police

Police Brutality and Down Syndrome

We need organizations like Save Down Syndrome other organization like the ones listed in here, and people like you to keep promoting and shouting their worth.

We will continue to spread awareness:

  • Until the first response to a down syndrome diagnosis is not “I’m Sorry.”
  • Until students with down syndrome are included with their non-disabled peers.
  • Until people stop using phrases like retarded, mongoloid, downs kid, etc.
  • Until people stop looking for a cure or a miracle.
  • Until abortion isn’t the first the thing a doctor suggests just because the child may be born with down syndrome.

 

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!!

IEP Guide

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.

Here we go:

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:

  • have access to the IEP;
  • be informed of their specific responsibilities;
  • specific accommodations, modifications, and supports to be provided to the child, in accordance with the IEP

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.

  • This option cannot be used with the IEP meeting that is required at least annually to review and revise the IEP. This option applies only to modifications the team might want to make after the annual IEP meeting has been held in person.
  • Parents and LEA must agree to not meet but to take this approach instead.
  • The amendment or modification to the IEP must be in writing.

Required participants include:

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

  May include:

Related services providers

Family members

Advocates

Student – required at age 14

Transition services personnel

Key Components of an IEP:

Present Levels of Academic Achievement and Functional Performance  (PLAAFP)

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:

  • Academic skills like counting, pre-reading, pre-writing
  • Daily living or self-help skills such as dressing, eating, using the bathroom
  • Social skills like playing with friends
  • Behavior
  • Sensory skills such as hearing, seeing
  • Communication skills as like talking, listening
  • Mobility getting around in school and in the community.

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

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.

Special Education/Related Services

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:

  1. Advance appropriately toward attaining the annual goals;
  2. To be involved in and make progress in the general education curriculum and to participate in extracurricular and other nonacademic activities; and to be educated and participate with other children with disabilities and nondisabled children in the activities

Least Restrictive Environment or (LRE) and Placement Decisions

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:

  1. Your child should be with kids in general education to the “maximum extent that is appropriate.”
  2. Special classes, separate schools or removal from the general education class should only happen when your child’s learning or attention issue of his “disability” under IDEA is so severe that supplementary aids and services can’t provide him with an appropriate education.

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.

Time Frame of IEP

  • Initiated as soon as written, unless written during school vacation/summer or when short delay required for services to be provided
  • Transfer students served within 1 week of  transfer
  • Must be in place before student placed in special education

Transition

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.

Progress Toward Annual Goals

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!

Special Considerations

  • Language needs for students and parents with limited English proficiency
  • Behavior intervention plan for students with behavior challenges
  • Braille instruction/use of Braille for students and parents with visual impairments, unless deemed inappropriate
  • Communication and language needs for students with hearing impairments
  • Need for assistive technology devices/services

Quick overview of Substantive Requirements: 

  • Parents must be equal partners; however, they do not have absolute veto
  • IEP must be reviewed annually or sooner if progress is lacking
  • All teachers involved in implementing IEP must have access to it; must be implemented as written and
  • Districts are still responsible for IEPs of students placed in private school

Prior Written Notice

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:

  1. to initiate or change the identification, evaluation, or educational placement including graduation with a standard or advanced diploma of the child or
  2. the provision of a free appropriate public education FAPE for the child.

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.

Signing

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.

Final Tips

  • Make an agenda of your main concerns will help keep you on track and everyone else. Make one for yourself with all of the notes of concerns to discuss so you don’t forget to mention something important during the meeting.
  • Writing down any questions, concerns and ideas beforehand will ensure you’re following the agenda.
  • Arriving early to the meeting shows that you’re prepared and ready.
  • Start the meeting with an expression of appreciation setting positive ground rules.
  • Focus on the issue your child’s NEEDS not personalities
  • Always remember that with the end in mind “the beginning impacts the end”.
  • Stay focused on the student throughout the process.
  • Focus on interests the What not positions the Why which is key in conflict resolution
  • Communicate clearly and listen carefully
  • Respect the views of others even if you don’t agree
  • Share your views willingly
  • Ask and welcome questions
  • Be open to ideas and views presented
  • Honor time limits and stay on task

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.

  • Could you please share the data to support ___?
  • What time of day does ___ usually happen?
  • You say the policy is _____. May I please have a copy of that policy to read?
  • I think I heard you say_____. Is that correct?
  • Would you please rephrase that so I’m sure I understand?

Resources:

Getting Ready for Child’s IEP

Parent Center Hub IEP Progress

Wrightslaw: IEP Draft

IEP Goal Tracker

Understanding IEP Law

Anatomy of an IEP