S2 E3: The 6 Biggest Mistakes People Make When Advocating for Deaf Accommodations

Host Crystal Hand talks all things advocacy.    Drawing from life experiences, countless hours of training in the field and 9 years of coaching others, Crystal covers how to navigate your way through school and medical systems to make sure you are never left out of the conversation.   Everything from learning your rights to controlling your temper - She discusses the dos and don'ts on how to advocate for yourself or your child for deaf related services.

This podcast is produced and owned by Crystal Hand and not associated with any other company, business or government entity.  "The Other Side of Deaf" podcast and associated websites and social media pages represent the opinions of the host and her guests on the show and do not represent or reflect the opinion of any organization the participants are employed or associated with.  The content here is for information purposes only and should not be used for medical or legal purposes.
 

Additional Resources:  Special Education Law Resources

Wrightslaw Special Education Law and Advocacy

Transcript

Welcome to the Other Side of Deaf, this is Crystal Hand your host.    It is the beginning of the school year - a time when every parent feels a little bit of anxiety about the pressure to make sure your child is prepared for school.  Do they have all the school supplies, backpack, new shoes, and clothes that will fit?   Have we done all the doctors' checkups and random appointments before school starts?   Our hope every year we are going to be completely prepared, making the rest of the school year a breeze.   But for those of us with a deaf child or a child with a disability or learning difference, there is an added item on the list - does my child have all the accommodations set up that they need to succeed this?  It is the biggest thing on the list for us, and is the most scary, because if we screw this up, it will make everything harder.  That is why today, I am breaking from my normal path of interviewing someone and going solo and talking about advocacy.  It is the number one thing I help families with, and something I have tried to master over the last 18 years.   

Now the disclaimer, I am giving you some tips based on my experience as a parent and family mentor and will be talking about advocating for children, but please listen to all these tips and apply either them to your own situation or to help guide families you work with.   Also, Deaf adults may have different tips or experiences, and I encourage you that if you can connect with a successful Deaf adult, they can be a great resource.  Also, my experience is based on working within the systems within the United States.   For my international listeners, some of these tips may not be relevant.  AND within the U.S.  each state runs a little bit differently so check with state programs in order to find out what is available to you.  

Advocating for yourself or for your child can be very daunting, and over the years I have had a lot of success - but it came with the price.  That price is learning from mistakes.   Today's topic is the 6 biggest mistakes people make when advocating for themselves or for their child.  And full disclosure, I have made every one of these mistakes, so if you are listening to this and you think I always did the right thing - you are wrong.  The knowledge I am giving you today was hard won by a road full of difficulties.  But I can tell you that if I can learn to navigate this road, so can you.  So, let's get started.   

Top 6 Biggest Mistakes people make when advocating for accommodations:   

Ok number one.  Being afraid of a label - For some reason in our label obsessed society, when it comes to disabilities we tend to avoid them.   I have heard so many families and professionals say, "I don't want my child to be labeled as having a disability, so I don't want to get them diagnosed or identified as such."  This is a HUGE mistake.   It is the equivalent to saying if I don't know, then it can't be true and, in this case, though ignorance is NOT bliss.  Step one of advocacy is getting a formal diagnosis.  Without it, you can't receive services.  It can be hard for us to admit, and getting a final word that there is something different about you or child can be a tough pill to swallow.  It can feel like a swift kick in the gut, but there is also freedom in the label.  What do I mean by that?  Well ask any parent who has been to countless doctors' appointments trying to figure out why their child is sick, or not typically developing.  Once you finally have a label, you have a road map.   You have a direction to start, and you can start your journey based on the science and knowledge that is already out there instead of just trying to guess.    Now I know what some of you will say "yes, but I don't want my child to know they have a disability because then they will feel like a victim."  I going to address tips on this later, but for now I'll just say this: your child will never learn to ask for what they need, if you make them feel like their diagnosis is something to hide.  Learning to advocate and tell people what they need does NOT have to come with a poor me mentality.  Don't treat your child like they are a victim, and they won't grow up believing they are.   

So, the first thing is getting that diagnosis.  What level of hearing loss does my child have?  How much can they hear with and without hearing aids?  Does my child have any other developmental delays or is a hearing difference the only thing?  Is there a speech or vocabulary deficits?  Find out all these answers, because when you go into a school, or into a doctor's office, and you say, "I would like this accommodation", they will ask you why.  Particularly schools will ask why your child needs this.  - You need to have a documented answer, or you will never get anywhere.  So get that label.   That's step one.

Okay number two mistake people make advocating for their children.   Not knowing your rights.  Ok so this one is specific to America, although other countries probably have laws that align with this, I just don't happen to know them.    But in America we have the American Disabilities Act or ADA. What is it?  it is a law that states that business and schools that serve the public cannot discriminate against people with disabilities and need to provide them reasonable accommodations.    So, when most people think about this law, they think of something like public buildings need to have wheelchair accessibility.    But the ADA laws apply to ALL disabilities.  And in the case of hearing loss, it means that appropriate accommodations for communication access have to be given based on the needs of the individual.  So, that can look like providing captions, sign language interpreters, specialized instruction and so much more.      I'll give you an example from my own life.  When my daughter goes to the doctor, we ask for a sign language interpreter for her.  Now, the first time we asked for this at a particular doctor's office, they told us we had to bring our own interpreter and pay for it.   This was Incorrect information.  I kindly told them that actually, it is required by law that their office provide reasonable accommodations for her at their expense because they are a public service.  They are required to have that built into their budget unless it would cause a significant undue burden to their practice (which for a doctor's office is almost impossible to prove).  Upon hearing that, the receptionist checked with the office manager and realized I was correct and every appointment after they provided an interpreter via video conference.  If I would not have known my child's rights, she would have gone without accommodations.  

Side note:  I know some of you with younger children are thinking "well, I am always with my child so I can make sure she understands".  NO!  Stop that thought right now.  This sounds harsh, but your child needs to learn how to advocate for themselves, and the best way is for them to see it done for them when they are young so that when they are 18 and going to the doctors without you, they know how to do it and it is just natural for them. It is important, they need to learn how to be independent.  Now I'm not talking about your six-month-old and you need an interpreter for her but if you have a fifth grader or sixth grader absolutely, they should be getting those services.    It also teaches them that it is no big deal.  Again, going back to teaching your child that they don't need to hide their difference- showing them how to ask for accommodations empowers them to be independent and not rely on other people.   

I know that I am speaking to parents right now, but this goes for deaf/hard of hearing young people too.    Be bold, learn what your rights are and ask for them.  Take control of your accommodations and your future.   

In addition to ADA laws, there are also special education laws in American that you need to understand when your child is in school.    Again, all schools in the U.S. are required to provide accommodations for students with disabilities and make sure they get a free, public education.    BUT I'm going to tell you a little secret.  Schools are required to give you accommodations based on the needs of your child if you ask for it, however, if you don't ask for something, they do not have to offer or advertise services to you.    I see so many students out there that are not getting the accommodations they need because parents didn't know what they were allowed to ask for. This is where it is important to know what your diagnosis is, and what your rights are.  I could do an entirely different podcast complete with hundreds of episodes on Individual education plans and 504s, but I don't have time for all that right now, so I won't go into specifics today.  But just know that you have rights as a parent and your child has rights. And just so we have a basic understanding of some of those things before I move on, I'm just going to give you four short points that every parent should know about their child's education without going into too much detail.  Because like I said this is such a big topic and I can't cover it all.   But what you need to know are these four things.  

Number one - you are an equal partner with the school on deciding what is needed for your child.    They should include you with all decisions regarding accommodation or changes to the Individualized Education Plan or 504 if you have one.  Don't just accept them "writing an IEP and giving it you.  Be a part of the process.  

Okay number two.   An IEP is a legal document and must be updated yearly but you can open it at any time, and it can be opened by you or any other member of the IEP team.  That means it can be updated or changed throughout the year as needed AND it is required that the staff at a school follow the plan.   It is a legal document.  So, make sure you know what is in that plan and are tracking if it is being followed and if the accommodations are working towards the desired goals.    

Ok, number three. A school cannot say "we don't have the budget for that" as an excuse for not providing accommodations".    Now that doesn't mean they have to give you want everything you want, but they must come up with reasonable accommodations that will get you to your goals.  

Number four.   There are ways to problem solve and get advocacy for your child if you feel they are not getting the services they need.  Most states have some sort of organization where you get someone to come to meetings and advocating on your behalf when things are not going correctly, or they have a problem-solving plan in action for when parents are unsatisfied with their education plan.  Make sure you figure that out on where you live on what that process if you need it.  

Like I said, I could do an entire podcast on advocacy just in IEPs, but I don't want to get too Indepth here.  I will point you to a great resource called writes law advocacy.  I'll provide the link in the description, or you can just google it.    They are a website which has great resources for advocating and has great articles.  You can sign up for their newsletter.  Articles are specifically on special education laws and it's a great resource.  

Now, I know some of you out there are thinking "holy crap, I don't have the time or the energy to learn all this".   First of all, you would be surprised how much you learn when you need it.  But you also don't need to know everything all at once, but just what your child needs at the time.  And there are some great resources out there to help guide you.  Probably the best resource is to find someone who has already gone through that stage of life/school that can help you navigate what you need to know. Community is incredibly important with this.  I have been doing this for 18 years and I still learn things from other parents and deaf adults.  So don't be afraid to reach out and ask questions.   

Ok, number 3 on mistakes people make advocating.  Number three.  Talking to the wrong person.  We have all witnessed some person in a store or restaurant cussing out a cashier for something that that person had no control over.   The terms of a coupon, or the quality of a product.  The cashier may be the front face of the store or restaurant, but they don't actually have the power to make any decisions for the company.  The same goes with schools, doctors' offices and general businesses.   Going back to the example of requesting a sign language interpreter for my daughters' doctors' appointments, - the receptionist didn't know what the requirement was, but the office manager did.   In that case, I needed to give the receptionist time to talk to the person that actually knew the information and had control of making the right decisions.   

This is incredibly important when you are advocating in schools.  I have had so many parents call me and say, "I talked to the principal, and he didn't do anything".    Well, the answer is, he was the wrong person to talk to.  Principles of school oversee everything in the everyday life of a school.  But just like you wouldn't go to the principle to talk about your child's mental health.  (hopefully you would go the guidance counselor), the same for special education.  A principal or vice principle is going to know basic facts about special education, but they may not know the ins and outs of what the school legally is required to provide the school education's resources in that school district   In every school district there is or should be a special education director.   That is the person that is in charge of making sure the school district is complying with all the special education laws.  So, when you are advocating for your child and you need to go up the chain, the special education director is your person.   

Now, I'm going to make a note that you should never "start at the top of the chain".    Part of advocating is working your way up the chain until you get satisfactory results.  For example, if you have an issue with your child not getting services in a particular class, then first, you need to talk to the teacher - see if there is a misunderstanding or a reasonable work around.   More often than not, people don't accommodate because they don't know any better.   They don't know why it is important.   This isn't just in schools - this is everywhere you go.  People don't know what they don't know because they don't have to deal with what you are struggling with on a daily basis. So, make them understand.    If you don't get results talking to the teacher, talk to your case worker, if no results there, then go up to the special education director.   Find the people that have the power to change the outcome.   

I'll give you an example of how this played out in my life.   A few years ago, my son was in middle school and in his IEP, it stated that the teacher had to give him the notes before class so that in class he could focus on what was being said.  The reason for this is you can't look at your paper to take notes and look at the teacher to read lips and understand directions at the same time.   It is physically impossible.   So, providing notes allowed my son to have full access like every hearing child by having notes and being able to "listen" at the same time.  But every school year I always had one teacher that didn't want to follow the IEP because they thought it was unnecessary and this particular year, we had a teacher that was like that.  So, I called the teacher and asked if I could meet with him.  We chatted and he said "well, I think he needs to learn how to take notes like everyone else because he will have to do that in high school and college.  I explained to him that no, his IEP can include this in High school and in college ADA laws will make sure he has reasonable accommodations so he can continue to have access.    An entire IEP team came up with these accommodations because they are needed, so please follow them.  After that meeting, my son told me that nothing had changed, so I had a talk with his teacher the of the Deaf and she had a conversation with this teacher letting him know why it was so important.   It helped for a hot minute, and then the teacher would constantly forget to give the notes.  At this point in time, I sent an email to the teacher and copied the special education director on it and I explained that if they were not following the IEP the school was in direct violation of the law and we would need to address this in a meeting with me.   Within 2 days I got a call from the special education director letting me know that it has been handled and Luke would be getting accommodation from now on without question.  I don't know what the conversation was with the teacher and the special education director was, but I do know that I got results.  I gave the teacher the benefit of the doubt, I provided ample opportunity for them to correct actions and in the end, my son got the accommodations he needed because I talked to the right people.   Going up the wrong latter, talking to the wrong people will only give you frustration.  Make sure you do your homework on the best and easiest way to get results.   

Okay, number four mistake that people make advocating for their children - Trying not to rock the boat-   If you have ever met me, you will know I am a people pleaser.  I do not like confrontation.  Whenever I do have to confront people, I get physically nervous and shaking and my anxiety of how things will play out runs in a thousand different directions.  I don't like rocking the boat.  but I learned quickly that if I was going to set my children up for success and advocate for them, I had to rock the boat sometimes.  I had to get over my fear and do what needed to be done.   I decided a long time ago that when it comes to my children's health and education, what they need is more important than me being liked.  I would walk into meetings and think "I am not here to make friends; I am here to make sure my child has what they need".  When I framed it like that in my mind, I could stand up for myself and my child without reservation.  Because the truth of the matter is this is my job.  This is my expertise.  Sure, I didn't get paid to advocate for my own children.  I don't have fancy letters behind my name, but I am the expert on my child.  I have a PHD in Luke and Sammatha Hand.  I know more than every professional that is in their lives.  I manage the big picture.  And as their mother it is my JOB to make sure they have what they need.  So, when I walk into a school meeting or make a phone call on their behalf it is business now.  I am not "just a mom" (which I hate the phrase by the way).  I am my child's representative.  I am their advocate.  So, I have to man/ woman up and do my job, no matter how uncomfortable.   

That means I need to do my research, ask questions, have an open mind to alternative solutions and work within the system.  But it also means, I don't have to accept the status quo.  I don't have to just go along with what they are telling me if I know it isn't what is best.  I don't have to tell my child "That is just the way it is - sorry just deal with it"   I have a responsibility to be my child's voice when they don't have one and teach them how to use it as they grow up so that they can do so when I am not around because let's face it, this world is unkind to all of us.  It will not be easy for them all the time.  By showing up and fighting for them when needed, I am teaching my kids 2 things One, they always have someone that will support them in whatever they need.  And two hey are worth advocating for.  They don't have to just go along with others. They can advocate for what they need.  It isn't an inconvenience because they are just as important as everyone else.  So, rock the boat, make noise if you have to, and set children or yourself up for success.   

5.  Burning bridges 

Even though I just said that I don't like confrontation, like most moms, when it comes to my children, I can go from calm to fierce in about 2.5 seconds.  When my children are not being treated fairly, or when someone tries to deny them accommodations, I tend to only see red.  I become the literal definition of a mama bear.  My first reaction is to rip the person   who is causing my babies pain apart.  This is my first and natural reaction.  But over the years I have figured out that when I unleash this part of me when advocating for my children, I tend to do more harm than good.    You see, in any particular area, unless you live in a big city, the number of providers that specialize in what you child needs is probably going to be small.  So, if you have a problem with someone, they are going to know most of the other providers in the area - and yes, they talk.    Also, depending on how things go over the course of several years, you may see this provider again - without having many options.  I will give you an example: My children had an early intervention provider that I was not super excited about.  She was okay but she wasn't my favorite.  We had her for a year or two and then my children were assigned someone else, and I thought Great, I won't have to deal with her anymore.  A few years later, I walked into a meeting to be introduced to the new Deaf/hard of hearing teacher that was assigned to our district and low and behold it was her.  Well crap.   Luckly, I left on good terms with her because now she was going to be working with my child again.  And before you ask, yes, I could have fought and tried to get a different provider, but then I ran the risk of my child going weeks or months without ANY services because there are only so many providers out there and they all have big caseloads.  So, what was best for my child? Well, it was me swallowing my mama bear rage and working with her to get a good outcome.  And here is the thing.  If you are working with a teacher or therapist, they got into this profession because they chose it.  They want to help, and sometimes for whatever reason, maybe they are not on top of their game when working with you.  Maybe they are disgruntled from being beaten down by educational systems that are difficult to work within, maybe they have dealt with a thousand families that have just been horrible to them. Or maybe they have something going on in their personal life that is just kicking their ass.  And although that is not an excuse for them to not do their job, it is the parameters you are working within.    Most providers want to help your child. They want to do the right thing.  They just may not have the resources, knowledge, training or capacity to accomplish that.  The best way to help is to work with that person to figure out the best strategies that will work for your child.  It isn't ideal, but you can make it work.   

As a parent (or if you are advocating for yourself) it is hard not to let things get personal when things are not fair.  It is easy to see rage.  But going back to the thought - this isn't personal, this is business - you need to keep your emotions in check.   How do you deal with a disgruntled customer - well you don't fight with them that is for sure.   You come up with a solution to get what you both need that works for you both.   Because if you come in hot - you will regret it.   

I will give you an example from my own life.  There was one time that I went to pick up my children from a sport practice and when I arrived the person that was supposed to be helping them with accommodation so they could understand the coach was nowhere in sight.  The coach was talking to the group, and I could tell my kids were just lost.   Full discloser   I had had a bad day at work, and in that moment, I couldn't contain my mama bear tendency.  I marched down there to the coach's office after practice and let my fury fly.  Now, understand.  This is the coaches first offense.   He was normally very accommodating, so this wasn't a pattern of him purposely leaving my kids out.   But at that moment, all I could see was my kids being left out.  I yelled at him for about 10 minutes and walked out in a huff.  ---Then I looked at my kids and saw the horror on their faces.   Both of them were completely embarrassed by me!  They were angry because they were old enough to say "mom, I could have handled it, I was asking my friend to help fill me in on what I missed and how dare you yell at a coach that I like".  I later apologized to the coach for freaking out and worked out how to best accommodate my children and make sure it didn't happen again.  But before this incident the relationship between our family and this coach was great.  He was routinely going out of his way to help my children - after that he walked on eggshells, and it was never the same.  I damaged the relationship between him and my children.     

And think about it, if someone comes to your place of work and just starts yelling at you for something you did wrong, how likely are you to be like "yeah, I want to go out of my way for that person".  No. You wouldn't.  Nobody would.  In fact, if you work in a restaurant, you would probably spit in their food.    It is the same with providers.  When you act in a mature manner, give someone the benefit of the doubt and try to work with them as a team to get your child needs - then they are more likely to say - yeah that mom is just trying to do what is best for their child.  She is willing to work with me.  But if you come in and berate them, you may win the fight, but you will have caused significant damage to your cause.   

Now, does this mean you can't have a moment of anger when things don't go right - no. If you can get to the point that you never let your emotions get the best of you, then you are a better person than me.  I have yet to master that.  But what I can tell you is that you can train yourself to stop before you speak.  I have written SO many nasty emails over the years that I have never sent.    I write them out and then tell myself I have to wait 24 hours before I send it.  Usually by that time, I can go back, re-read it and edit it so that it is much more diplomatic.    I have also walked away from many conversations before and said, "You know, I am really upset at the moment and I need a minute to think about how I want to handle things, can we revisit this later".    Even if it is just a 10-minute break from the conversation.   

And just so you know, I still I have moments of anger and temper tantrums that I get out of my system before I go back into advocating game.  I have been married for over 23 years and my husband has heard all my rantings.    Sometimes I say to my husband "babe, I am going to have a little temper tantrum here and say everything I am thinking, I need you to just listen and not take offense because this isn't directed to you, I am just pissed off and need to let it out.    When I say that, he knows, - just let her ramble.  He probably just tunes me out, and that is ok.  because sometimes I can just get my yelling fit out and walk back to the offending person calmly.   Side note and pro marriage tip - if your spouse is doing this - don't give advice unless they ask for it.  Just listen allow space for all the feelings).  If you are the person yelling and having the temper tantrum moment- make sure you don't beat up your spouse - they aren't the person you're mad at, and make sure they know that.  

Ok, back to the point.  The point is, you can have your emotional outburst in private, but just like you wouldn't have a temper tantrum in a board room, you shouldn't do it when advocating for yourself or your child.     

Now that doesn't mean you have to just accept what you get as far as providers or services, but you just have to do it diplomatically.  If you have a therapist that isn't a good fit, go to them first and say "hey, this isn't personal, but I feel like your teaching style isn't a good fit for my child.  Is there a way we can work together to change things or get something or someone that may be a better fit."  A good therapist will understand and either come up with a different plan or refer you to someone else.  Because if they are honest, they may feel the disconnection too. If that doesn't work, you can move up the chain to get what you need. but just remember to be respectful at all turns.   Remember there is a balance of getting what you need without leaving a path of destruction.   

Okay last but not least of mistakes that people make.  Number six -not allowing your child to advocate for themselves.  This is for the parents of older children.  Starting in middle school - you should start to take your hands off the wheel and start giving them the reigns.  For a parent that is HARD.  Especially if you have fought battles for years, it is hard to start to let go.  But the truth is, as I said before, your child needs to learn how to do this on their own and starting in middle school they need to start feeling like they have some control of their life.  So, what does that look like?  Well, in middle school before every IEP meeting or doctor's appointment I would sit down with my children and go over what I was going to be talking about in the meeting or appointment and I would ask "what do you feel that this person needs to know".  So, for example, every year I would go over the IEP draft with my child.  We would read it together and I would say "tell me what is the hardest thing for you at school" and We would talk about it and find out - is this something that is deafness related and if so, what things can we suggest or ask for that might make this better.  I would also ask "are their accommodations that you have that you don't feel like you need?"  and we discussed on why or why they do not need that particular service.  Then when I would go into an IEP meeting, I have the notes from my conversation with my child and could speak on my their behalf.   

Once they got to high school, they were old enough to attend their own IEP meetings.  I would let my children know they needed to go to the meeting.   I would be there to help but they are going to start speaking up for yourself.  I would help them prep for it but in the actual meeting they would be doing most of the talking.  I would also have my children have a copy of their IEP in their backpack, so if a teacher wasn't providing accommodations, they could pull out of the IEP and say "in my IEP right here is says I need this.  I really need you to follow this".  -  We have found at the high school levels that teachers respond better to my children advocating for themselves then the "crazy mom" who just keeps calling.  Because again, most teachers want their students to succeed and if your child comes to them and says, "this is what I need to be successful in your class", more often than not that teacher will try their best to help.   

And as someone who now has a child in college, I can tell you those skills transfer directly into real life.  There have been so many times that my son has called me and said he had this problem or that problem and he fixed it on his own by advocating for himself and sometimes has helped his friends to get what they need by showing them how to do it.  You can't be around your child every step of the way.  Whether you want to admit it or not, they are going to grow up and live their life, and if you want them to be independent and successful when they grow up - you have to give them the tools to advocate for themselves while they are at home in your care.   

And along with that, you need to make them understand they are NOT a victim in life.  I would routinely tell my children that they can't expect other people to do more for them than they are willing to do for themselves.  Don't expect a teacher to go above and beyond for you if you aren't even trying to do the homework.  Don't expect someone to give you everything without you putting in effort.    You can expect them to match your effort, but don't expect them to do more than you are willing to do for yourself.   Being deaf doesn't mean they can't do things.  It may mean it is a little harder than it is for others, but it doesn't mean you can't do it.  So don't make excuses, and if you want to go out and do something, figure out what you need to make that happen and ask for it and do it.   You can have a pity party for 5 minutes. but after that get it together and get to work.    It sounds harsh, but you can either be a victim or a success, but you can't be both.   

Ok, so there you have it.  There are probably some steps in there that you didn't like to hear, or you may disagree with.   This is just advice from what I have seen in my own life and those that I have coached over the years.    I hope you can learn from my mistakes.  We all need to learn how to work the system to make this a deaf friendly world.  I am still learning and continue every day.   My family still makes mistakes - but we learn from them and move on, and I encourage you to do the same.   So go out there and make things happen, pave the way for high expectations for accommodations and remember we can do hard things.   And with that.....

 If you're just tuning in for the first time to my podcast, I encourage you to go back and listen to some of my previous episodes from last season where we discuss an array of topics from all different perspectives.   Don't forget to like and subscribe to my channel and if you really like my podcast check out my Facebook and Instagram pages and of course share with your friends.   Also check out my YouTube channel where I have the first three episodes of the podcast interpreted into American Sign Language and we'll be continuing to add more as time goes on.   Stay tuned for future episodes coming out but until next time I'm signing off.