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You Shouldn’t Wait for it to Offend You Before You Take a Stand

Today is the official day of awareness for the Spread the Word to End the Word campaign.

Per usual, I have been reading posts from various bloggers who I often read, and today a particular post struck a nerve with me – not in a bad way. The author wrote You’re not offended until it affects you as a response to someone who simply does not understand why the word “retard” can cause one to get so “worked up.”

I paused for a moment and let out a not-so-silent Amen! to myself. And then, I paused once more as I thought about my experience and how true that was for me personally. Which then led to me to think, “Wow, it’s such a shame that it took disability directly impacting my life before I changed my mindset.” Finally, I realized how true this is for MOST people.

So many people vehemently defend their “right” to say the r-word by citing their right to free speech among other erroneous excuses (see the article linked above), but what all those excuses boil down to is the fact that they likely have zero experience with people who have intellectual disabilities so they don’t understand the “big deal”.

They don’t know what it’s like to see a loved one struggle with the most basic of tasks, to wonder if their child will ever speak, to wonder if their child will ever walk without a limp, to wonder if their child will ever walk at all. They don’t know the fear in our hearts when we send our child to school for the first time and HOPE that he will be accepted by his peers. Will they tease him because he doesn’t walk fast enough? Or because her speech is slow and difficult to understand? Will they point and laugh because he rides the “short bus”? Will they simply call her a “retard” and walk away?

If these thoughts have never crossed your mind, you’ve probably never second-guessed your “right” to say the r-word either, but that still doesn’t make it okay for you to use the word. When we (parents of children with disabilities) correct you or bring it to your attention, it’s not to embarrass you or chastise you – it’s to educate you because we know you might not have had a clue how that word affects us and our children. We know because we’ve been you.

So many of us grew up using the r-word and never gave it a second thought. But then we grew up and had a child with a disability and “retarded” became part of our child’s diagnosis.  Suddenly, the word lost all of it’s hilarity. I was ashamed and embarrassed that I ever used that word so frivolously. Suddenly, the word had real meaning and it did NOT mean stupid, pathetic, loser, less than, ridiculous or any other word the r-word often replaces. With a single word, our dreams changed, our world turned upside down, and our instinct to protect our child from ever hearing the word kicked in. Suddenly, it became a very “big deal” and it was no longer “just a word.”

You’re not offended until it affects you.

Why should disability have to affect any of us at all before we are offended by the r-word?  I love my child unconditionally with no end, but I would not wish any of the struggles we have had on anyone, simply so that they understand the true significance of a word. Don’t wait until it is too late. 1 in 10 Americans are affected by a Rare Disease. 1 in 68 children have been diagnosed with Autism. The prevalence of other disabilities is just as great. Chances are, you DO know someone with a disability. They may not be YOUR child or YOUR family, but they are human and they have feelings and they deserve your respect. The r-word hurts an entire population of people, just as racial epithets do. It does not belong in our vocabulary and should no longer have a place in our culture. Find the compassion in your heart and hear my words. I don’t want you to know the hurt I have before this issue matters to you. Take a stand NOW. If one day, you learn your child has an intellectual disability you will be spared the shame and embarrassment I faced when that word became more than “just a word.”

 

Take the pledge now and Spread the Word to End the Word.

spread-the-word-to-end-the-word-2015

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Vote for Our SXSW Panel Idea!

Friends and Braxton supporters, I need your help!

As you all know, I’ve been very involved with U.R. Our Hope and they helped us so much as we struggled to find a diagnosis.  I have been asked to join a panel discussion with U.R. Our Hope and others to discuss the use of online resources, social media, and blogging to navigate the healthcare system while on a diagnostic journey.

When I was finally ready to share my story, the internet was my saving grace.  It is through the internet, my blog, and Facebook that I have been able to learn so much and connect with so many people.  In fact, it is through my blog that I first learned about Braxton’s diagnosis! I had several people contact me asking if he had been tested for Rubinstein-Taybi Syndrome well before our geneticist even thought it a possibility.  Reading about it ahead of time made the news much more tolerable and I was truly finally able to breathe when we received our test results.  Having someone to walk this journey with me, being able to connect with other parents, learning about “real life” experiences instead of relying on “textbook” definitions has helped immensely.  I want to reach other people and help them in the same way that I have been helped.

If you know anything about South by Southwest (SXSW), you know that people from all over the world and from all walks of life attend this event.  This would be the ultimate chance to reach out to others and let them know they are not alone.  The internet has made so much more possible for me and for many others I know.  I honestly do not think I could have survived this and be the parent that I am 20 years ago.  The information and resources readily available via the internet are simply astonishing.  Help us help others!

All you have to do is vote for our panel ideas by clicking the links below.  They will also be in the sidebar of our site until voting ends September 6th! You do have to create a Panel Picker account, but it’s quick and easy. I promise! Create an account, click the “thumbs up” to vote for BOTH of our panels and that’s it! You’re all done! You can only vote once, but we would so greatly appreciate it if you did! If so inclined, you can even leave a comment to tell others who are browsing through topics why they should choose ours! Or if you have any questions, leave them there and we’ll be happy to answer them.

Using Social Media to Navigate Healthcare

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Medical professionals, patients, and savvy navigators of the healthcare system will discuss resources to use when traditional channels are not effective or timely when a person or a family is faced with a medical crisis. The healthcare system can be daunting to those unfamiliar with the language and culture of the medical community. The benefits of online education, support groups, blogs, radio blog shows, Facebook groups will be explored. We will give specific examples of how individuals and families can benefit from utilizing social media on their diagnostic journey. We will discuss the benefits of having a patient advocate, whether it be an individual or an online community. We will talk about how to protect your privacy in this open and public forum. From finding a diagnosis to negotiating with healthcare networks, third party payers, and providers to have services covered, we will delve into the pitfalls that hinder effective care, and then provide solutions.

On a Diagnostic Journey

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Navigating the healthcare system when the diagnosis is not clear is a daunting process. Individuals with undiagnosed disorders lack identity and are often isolated and forgotten. This panel will provide resources to assist those with undiagnosed disorders in finding answers through advocacy and collaboration. On the panel are both individuals who know the undiagnosed journey, and those whose mission it is to guide and advocate for them. Utilizing social media, Skype, online support groups, blogs, and radio blog shows the panel members have been able to reach out “without walls” to help the undiagnosed community.

 

Thank you all so much for supporting this important mission!

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I Heard What You Didn’t Say, Loud and Clear

They don't know what they're missing out on.

They don’t know what they’re missing out on.

I always worry about Braxton going to school, growing up and the ridicule and discrimination he might face as he gets older.  For some reason, I never thought about the discrimination we might encounter NOW so early on in his life. That is, until recently, when it kind of hit me right in the face.

Before Braxton was born, actually not too long after I found out I was pregnant, I started calling around to different daycare centers to get pricing and availability sorted out.  Why so early? Well, believe it or not, several centers in our area have completely insane waiting lists for infant childcare.  When I had my older daughter, I waited until she was born and as I called around, I found that many places had a waiting list anywhere from 6 months to 2 years! 2 years!! What the heck?! It’s like you have to call them and say hey I’m working on having a kid so go ahead and put me down on the waiting list…but I digress.  Anyway, surprisingly, the lists weren’t that ridiculous this time around and we toured several different centers.  When we finally decided on one, I also moved Aileen there for after school care.  I honestly loved them from the first phone call I made.  The director was so warm and friendly and genuinely seemed to care more about the kids than the money.  They did happen to be the least expensive in the area, so that was also a plus.  When Braxton was born and our plans were shot, we were so concerned about the daycare.  When we finally got to bring him home, we stopped by the daycare to talk to the director.  We explained that we really didn’t know what was going on, but that Braxton was being sent home with a feeding tube and would have to have his feeds set up with a pump.  She didn’t even bat an eye.  She looked at us and said, “Ok, that’s no problem.” Before he started daycare, I went in a few times around a feeding time and showed the director and the infant teachers how to set up the feeding pump and how to care for his tube.  They were all so amazing and willing to learn.  They quickly saw that it really was no big deal.  We were so fortunate to have a place for him and have been for the past 2 years.

Sadly, we just got news that the center may be closing and we would have to find childcare elsewhere.  The director did tell us she is considering having a home daycare and would love to keep Braxton, and I think we’d consider if that does come to fruition.  To be clear, the center is closing due to issues beyond the directors control.  She and her staff did absolutely nothing wrong, and have been nothing but incredible with both of my children.

By strange coincidence, one of our therapists had recently recommended moving Braxton to a well-known special needs daycare in the area that would help to challenge him more than his current daycare and provide more of a learning curriculum specially geared toward children with varying disabilities.  We loved the idea, but the price tag that came with it? Not so much.  When we learned our daycare might close, it was clear that this was now very much an option we had to consider.  I toured the school and of course fell in love with it.  This director is also very warm and loving and the children are treated with great respect and not given a pass or taken pity on because of their disabilities.  It’s clear that she and her staff do everything they can to enable and empower the children, and I’m happy that we were able to secure a spot for Braxton there.  I really look forward to seeing the amazing progress he is sure to make.

Although we have found a place for Braxton, I’m still very bothered by the experience I had while calling around to different centers looking for a place for Braxton.  I know I’m not the only parent of a child with special needs and it is so disheartening to know how we and so many others are being treated.  It’s downright discrimination, and it’s NOT okay!

When we first moved, I did call around to several different centers in the area and they all said that they couldn’t take Braxton.  Since we were so happy with the current center and were only considering moving him for convenience, I didn’t press the issue and honestly, have forgotten what they all said then.  However, now is a different story.  We were very much in need of childcare and I again called centers near our home and perhaps, because I’m a little more experienced and know my child’s rights, I have a BIG issue with each and every center I called.

I called at least 12 different childcare facilities and while none of them flat out said “NO” (because that would definitely be against the law) the excuses they gave were so incredulous, they would have been better off just saying “No.” I really don’t want to get anyone in trouble, but I want to share our experience because I know we aren’t the only ones this is happening to.  I will share what happened to us, and the rights our children have so that if you find yourself in this situation, you will be better prepared.

When I called each facility, I told them that I was looking for care for my 2 year old who has developmental delays and a feeding tube.  I explained that developmentally, he is about 10-11 months and is in the infant/toddler room in his current center.   These are just some of the “excuses” they gave as to why they would not be able to take Braxton. And responses I wish I had given instead of sitting there like a deer in the headlights.

We can’t guarantee your child will be fed every 4 hours. Umm….really???? Do you often forget to feed the other children in your center?! Braxton’s feeding schedule does not at all deviate from the norm.  His feedings are at 8:30 am, 12:30 pm , 4:30 pm and 8:30 pm…notice anything? Yes, they correlate to the same feeding schedule any “typical” child would be on.  While they sit the kids down for breakfast and lunch, a teacher could be feeding Braxton while the other kids are feeding themselves.  It honestly would not take any more time and would not take the teacher’s attention away from the other kids, which leads to…

Well, he will be in a class with 11 other children and the teacher may not be able to take time away from the other kids to tend to his needs. So have none of the other children in your center ever fallen and hurt themselves, gotten sick, had an accident, or had bad behavior? Each of these situations require one-on-one attention and individualized care and would in turn deviate the teacher’s attention from the other children in the class.  Try again.

State law says that the age between the youngest and oldest child cannot be more than 18 months old. Interesting. He is currently in a class of children where he is more than 18 months older than several of the children.  I spoke directly with the state licensing department and was told an exception to that rule is allowed when medical documentation can be provided showing a child’s developmental age deviates from their actual age.  I’m not asking for him to be in the infant room, but the 12-20 month range would be just fine for him and more importantly, would be allowed.

These are just a few of the most common excuses I received and my thoughts about each of them.  Unfortunately, I didn’t say anything to them, just kinda rolled my eyes to myself and went on to the next center.  By the 4th one I was really deflated and didn’t even want to call any one else.  Their message was coming through loud and clear and I knew no one was going to accept Braxton and provide him the care he needed.   Of all the calls I made, only ONE center was more than willing to sit down with us and try to accommodate Braxton’s needs (which is the law..hmm imagine that?), but unfortunately, she did not have any space available in his age range.  Joseph even said he called around and he told me they didn’t even let him finish explaining our situation before basically saying no.

So what to do now? I looked up the guidelines for the Americans With Disabilities Act (ADA) and what they have to say in direct regard to childcare for children with disabilities.  What I found is interesting to say the least.  If I were a vengeful person, I could probably sue each one of the centers I called and win.  Then, we’d own our own daycares and could hire the staff of our current center to work at one of them! *insert evil laugh* OH, I’m just kidding.  In all seriousness though, if you are a parent of a child with special needs and having trouble with finding childcare, know that you and your child have rights!! Your child is protected by law!!!

Without reading through the entire ADA guidelines, I found this handy “Commonly Asked Questions”  about how the ADA guidelines apply to childcare.

Q: What are the basic requirements of title III?

A: The ADA requires that child care providers not discriminate against persons with disabilities on the basis of disability, that is, that they provide children and parents with disabilities with an equal opportunity to participate in the child care center’s programs and services. Specifically:

  • Centers cannot exclude children with disabilities from their programs unless their presence would pose a direct threat to the health or safety of others or require a fundamental alteration of the program.
  • Centers have to make reasonable modifications to their policies and practices to integrate children, parents, and guardians with disabilities into their programs unless doing so would constitute a fundamental alteration.
  • Centers must provide appropriate auxiliary aids and services needed for effective communication with children or adults with disabilities, when doing so would not constitute an undue burden.
  • Centers must generally make their facilities accessible to persons with disabilities. Existing facilities are subject to the readily achievable standard for barrier removal, while newly constructed facilities and any altered portions of existing facilities must be fully accessible.

Q: Our center specializes in “group child care.” Can we reject a child just because she needs individualized attention?

A: No. Most children will need individualized attention occasionally. If a child who needs one-to-one attention due to a disability can be integrated without fundamentally altering a child care program, the child cannot be excluded solely because the child needs one-to-one care.

Q: How do I decide whether a child with a disability belongs in my program?

A: Child care centers cannot just assume that a child’s disabilities are too severe for the child to be integrated successfully into the center’s child care program. The center must make an individualized assessment about whether it can meet the particular needs of the child without fundamentally altering its program. In making this assessment, the caregiver must not react to unfounded preconceptions or stereotypes about what children with disabilities can or cannot do, or how much assistance they may require. Instead, the caregiver should talk to the parents or guardians and any other professionals (such as educators or health care professionals) who work with the child in other contexts. Providers are often surprised at how simple it is to include children with disabilities in their mainstream programs.

Child care centers that are accepting new children are not required to accept children who would pose a direct threat (see question 8) or whose presence or necessary care would fundamentally alter the nature of the child care program.

Q: Must we admit children with mental retardation and include them in all center activities?

A: Centers cannot generally exclude a child just because he or she has mental retardation. The center must take reasonable steps to integrate that child into every activity provided to others. If other children are included in group sings or on playground expeditions, children with disabilities should be included as well. Segregating children with disabilities is not acceptable under the ADA.

These are just a few questions I found that apply directly to our situation, and I’m sure can apply to many others.  As you can see, the excuses the center gave us are in direct violation of the ADA guidelines at their most basic level! Admitting Braxton with a feeding tube, does not fundamentally alter a program, I think that asking a teacher or the director to learn how to tube feed is not at all an outrageous request and definitely falls in to the reasonable modification guidelines.

It’s so sad that a center would go to such lengths to exclude a child based on their own preconceived notions.  The tragedy would be a parent not standing up for their child.  As parents, we are our child’s voice! This is the time to become an advocate for your child and to fight for what is right.  While I’m not going to sue any of the centers, I do intend on reaching out to them again to let them know that what they are saying to parents in wrong and could get them in to a lot of trouble.

THIS IS NOT OKAY!

It is NOT okay to make a parent feel inadequate and to force them to make decisions like quitting their job because they cannot find childcare.  As a special needs parent, our job is immediately more difficult due to the battles that we have to face.  As we face each challenge, we learn to be better prepared and better equipped.  Parents need to educate themselves on the laws afforded to our children and how they apply in these situations so that they can face these centers and demand equal treatment.  This is flat out discrimination and it is unacceptable.  I could march in and demand that they accept my son, but at the same time I have to ask if I really want him to go somewhere where he already isn’t wanted.  Children can sense those things.

So, I’m not saying to go in and demand to be enrolled, but do point out the flaws in the system and hope for change.  Our children can light up a room simply by being in it.  Special needs children know joy like no other person can ever comprehend, and at the end of the day, these centers are missing out, not our kids.  If we can point out the mistake and a center chooses to accept our child, I hope that they will see just how much he can enrich their lives and potentially change their perception so that they might willingly accept all children despite their abilities.

Our children are not a burden.  They may require a little more care and attention, but what child wouldn’t benefit from that?  Our children do not fundamentally alter a program.  Instead, they can truly enrich the program.  The rewards for teachers are so great.  As a teacher, knowing that because of YOU a child can walk or speaks their first word, can make you so proud and remind you how important your job really is. These centers will never know that reward.  You could also be teaching the other children in the center about inclusion, about acceptance, about tolerance.

Perhaps, enrolling a child with special needs can fundamentally alter a program…it can create an entirely new program focused on love and acceptance for everyone.

 

Update:: Here is a link to another page on the ADA site about the application of the act. About halfway down you will see the red header “Childcare” and there are several examples of settlements and cases where parents successfully challenged the system. http://www.ada.gov/5yearadarpt/ii_enforcing_pt2.htm

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My Biggest Fear And How YOU Can Help

Stop the r-word.

Stop the r-word.

Sure, at first glance, Braxton doesn’t appear to have any medical issues.  In fact, most only see the handsome, smiling baby staring back at them, but things are not always what they appear to be.  That brings me to my first issue: What does “disability” look like? Does a person need to appear physically deformed before you consider them disabled? Before you knew Braxton, did you know “disabled” people could look…”NORMAL”? There is no standard of what people HAVE to look like in order to be classified as disabled, nor should it matter what they look like to deserve respect! That brings me to my next issue: RESPECT.  One of the ultimate forms of disrespect is name-calling and using words like “retard.” Mentally Retarded was once an official medical diagnosis used to describe many individuals who were “slowed or delayed in cognitive ability” (the official definition of “retard”).  Wait a minute…what do you mean “was once an official diagnosis” ? Yup, ONCE.  “Mentally Retarded” is NO longer recognized as an official diagnosis. The term has been stricken from legislation, healthcare policies, and diagnostic terms partially due to the extremely negative connotation the word now has.  Over the years, society has taken a medical term and the individuals it was ascribed to and transformed the word in such a way that not only is it mean and hurtful, it completely demeans the worth of millions of individuals.

Finally, this brings me to one of my biggest fears.  Eventually, Braxton has to go to school.  I am terrified of that day.  I’m not afraid of him being in school, but I am afraid of the other kids he will be in school with.  We are still so unsure of what the future holds for Braxton with whatever diagnosis he may have, but I’m certain he will have cognitive delays.  At 20 months, Braxton is actually more like a 10-11 month old baby developmentally.  It is possible that he “catches up” and maybe even has “normal” cognitive ability, but no one can tell me that with any certainty.  Who knows if his diagnosis may also bring physical deformities later in life – there is so much we don’t know right now, and most days I silence those thoughts and thank God for the blessings of today.  I’m so thankful that Braxton is doing as well as he is, but I know he’s still not where he should be.  I’m so scared of Braxton going to

Teach your children to be respectful

Teach your children to be respectful

school and being bullied.  I know it’s going to happen and there is nothing I can do about it.  And THAT is what terrifies me – the nothing I can do about it part.  I’m deeply saddened that as a parent I cannot help shield my son from the cruelty and hate in this world, that all I can do is help prepare him to face it, and hope he is able to actually defend himself when the time comes.  Braxton will be one who the term “Mentally Retarded” describes.  Actually, the official term is now “Intellectual Disability” and I know this is something we will have to deal with.  Braxton is more than likely always going to be behind his peers.  I don’t even know if Braxton will ever even speak correctly.  He makes many sounds, but none are real words with meanings.  He may need an assistive communication device to talk to us.  Hopefully he will learn sign language to communicate with us too.  He’s always going to be different.  We will do our best at home to teach him to embrace his differences and not be embarrassed by them.  We will teach his sister how to stand up for him.  She already loves him despite any disability, and I’m so thankful she will also grow up and be more tolerant of others because she has grown up in such an environment.  But hate, cruelty, bullying, ignorance, and a slew of other things no child should EVER have to deal with we will HAVE to prepare for, because it will inevitably happen.

I will admit (although I’m ashamed to) that yes, I once threw around the word “retard” like it was nothing.  I felt like if I wasn’t using it toward an individual with an intellectual disability in a mean way that it was no big deal.  I was wrong. Very wrong. It’s a HUGE deal. Sadly, it took having my own child with disability to get me to understand this.  And that’s where YOU come in.  I need YOU to help me bring this issue to light. To understand it’s importance in our life and how it directly affects us.  I can’t change the future, I can’t stop the hate my son will face, but I CAN attempt to educate everyone I meet and everyone who reads The r-wordour story about the terrible effects of the “r-word.” The word is usually used in a derogatory manner to mean any number of things including: stupid, pathetic, loser, moron, idiot – none of which is how I would want my son to be described.  This is so much more than a language change; it’s a culture change.   We as a culture have to change the way we think about people with disabilities and words like “retard” and ultimately strike that word from our vocabulary altogether.  You may not realize that your choice of words is harmful to people, but I’m here to tell you that it is.  The r-word hurts million of people and kids like Braxton.  If you wouldn’t want someone picking on Braxton, you shouldn’t stand for anyone slandering another child similar to Braxton.  When people are called out for using the r-word the standard response is something like “Oh, I didn’t mean YOUR kid” or “I didn’t mean it like THAT” or “well, you know what I meant” No, actually I don’t know what you meant.  From where I stand you meant to say that you did something stupid or foolish, or that someone else did something pathetic, or that someone is a loser.  Why not say that? Why not choose another word? Why not strike the insult altogether? The Special Olympics started the “Spread the word to end the word” campaign several years ago to tell people how harmful the r-word is and to get people to think about what their words mean.  Today is the national campaign day to spread the word.  There is still time for you to go to r-word.org and add your name to the list to pledge to STOP the use of the word “retard.” Little by little we can all make a difference for Braxton and all the children like him.

Spread the Word to END the Word

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Spread The Word to End The Word

So today is “Spread the Word to End the Word” What word might that be? The “r-word,” you know, “retard.” Although this post doesn’t specifically deal with the “r-word,” it’s about how words can hurt and ultimately has the same underlying goal: RESPECT! People of ALL abilities deserve respect no matter what. I will probably write more on the “r-word” later, but for now re-read this post I wrote last year about respect and tolerance for children with disabilities.

Journey Full of Life

If there was ever a question I absolutely abhor hearing, that would be the one. [Notice, I used abhor, not hate, not dislike, but abhor – extreme repugnance or aversion; to detest utterly; loathe – get the idea?] This one simple question can cause so much damage and most don’t even know it.

Let me first make clear, I don’t care what other people think or have to say about my kid. It doesn’t make US treat him any differently, love him any less, or change his plan of care. Kids, however, are another story. Sure, he’s not old enough now to understand the inquisitive eyes, but one day he’ll see just how cruel the world is and wonder what’s really going on. We took Braxton out a few times over the weekend after his surgery, and you would NOT believe the ugly looks he got. While I may just…

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