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What's New in Education
Kenzie Carlson

6 Things to Know When Bringing Your Service Dog to College

In May of 2021, I received my service dog Atlas from a local program and in August 2021, I began my senior year of college with him by my side. Do you or someone you love have a service dog they will be bringing to their college or university this fall? Here are a few things I learned this school year that could benefit other service dog teams. 1. It Is a Big Commitment Having a service dog in general is a big commitment. You have to keep up with their training and oftentimes put their needs before your own. In a college environment, it is even more of a commitment because dorms and apartments aren’t set up like a house. Depending on your conditions, tasks that take less time at your house might take a little longer at your apartment or dorm if you don’t have direct access to the things your dog needs such as grass to potty in. In my case, I was able to put in a request for a housing accommodation and was placed in a first-floor apartment with easy access to a large grassy area for my service dog to play and do his business. 2. Communicate With Professors It is incredibly important to both your success and your service dog’s success that you communicate openly with your professors throughout your college experience with your service dog. Let them know if you need a certain seat in the classroom to accommodate your service dog and the things you and your dog need from the professor to have a successful semester in their class. I’m generally a very open person, so most people in my classes knew why I had him and my professors and fellow students were great about him. Being open and honest about your needs as a team can help you have a great semester and maybe even inspire professors to help advocate for you in classroom situations that come up. 3. Set Yourself and Your Dog Up for Success Sometimes it’s difficult to remember that although my service dog is incredibly well-trained, he may make the occasional mistake. As his handler, it is my job to set him up for success. On the first day of classes during the fall semester, I vividly remember walking into my communications research class without getting my dog in the mindset of working. As a result, he made a mistake and barked a few times at people coming in the door for class. I of course was mortified by this, but quickly remembered that in order to set him up for success, I needed to take a few minutes to go through some basic commands before class so he realized it was time to work. From that day forward, he never made as much as a peep in class. 4. Having a Service Dog in Student Housing Similar to advocating for you and your service dog with your professors, it’s equally as important to advocate for yourself in terms of your student housing options. Be sure that you know which housing options offer what you and your dog need to be successful when working, but also during downtime. I was lucky enough to get an apartment on the first floor with easy access to grass and very close to the shuttle stop for my complex, which was exactly what I needed. My dog needed somewhere to play off-duty and I needed first-floor access as well as to not have to hike across the complex to take the shuttle to class. 5. Bringing Your Dog to Class Bringing your service dog to class can be tricky depending on the class layout. For example, in fall 2021, I took a class with a laboratory portion to it. Luckily, it was a small class and did not require my service dog to wear anything special to protect himself. All of my other classes were in regular classrooms or computer labs, which made it easy for Atlas to lay under my desk or beside it to stay out of the way. My biggest advice when bringing your service dog to your college classes would be to try and scope out the classroom before the semester starts so that you can get a feel for it and get an idea of where you and your service dog can sit. 6. Dealing With Criticism Dealing with criticism is something that as a service dog handler, I’m still learning to do. In college, I was definitely not expecting the amount of criticism I would receive from students about my service dog when they didn’t even know my dog. But at the end of the day, that’s just it: they don’t know my dog. They don’t know that we do dedicated training sessions at least once a day to work on obedience and tasks to make sure he is up to par. They don’t know that he spent the first year and a half of his life preparing to help me by learning over 20 commands and tasks. At the end of the day, you as the handler know your dog best and that is what you should cling to when bringing your service dog to college with you for the first time.

Hey Educators, Let's Stop Comparing Our Students' Disabilities

I’ve been working in special education for almost 10 years, and one of the things that frustrate me the most is when I hear teachers compare their student’s abilities to that of other students. I was once a student with a disability in the education system. Growing up, I always had trouble in school. I had a congenital heart defect, and because my disability wasn’t visible, I was always pushed to do things my body couldn’t do. One of the areas was in P.E. I was often told I had to run a mile but I physically couldn’t do it. When I said I couldn’t, I was seen as defiant, and my dad would be in the office fighting with the administration the next day. I switched schools constantly because of teachers pushing me beyond my physical limitations, and I was soon seen as a kid who just exaggerated things and had overprotective parents. When I got into middle school my undiagnosed autism started to become more of an issue. Where I once was an A student, my grades started falling, and I was seen as a gifted student that was just “lazy.” Society has been conditioned to compare. We often hear things like, “That person has it so much worse, so why don’t you try harder.” “If they can do it, then you have no excuse.” This thinking is deeply rooted in ableist ideas and inspiration porn. One of the things I try to remind educators when they see a student who seems like they are being lazy, not doing work, or distracted, is that we aren’t in their body or their mind. We are complex creatures and disabilities present differently in everyone. Many disabled students have multiple disabilities, chronic illnesses, and/or mental illnesses. These comorbidities can dramatically affect a student’s primary disability. One person with ADHD, autism, cerebral palsy, Down syndrome, lupus, anxiety disorder, etc. isn’t the same as another. Learning how your specific disabled student functions and thrives with their disability is the path to their success. I’ve seen a lot of educators get frustrated with a student when they compare them to someone who they deem as needing high support or who they think has it rougher than others. These assumptions are often based on the awkwardness of a student, their social interactions, how they communicate, or their physical limitations. They see these kids and determine that if they can get good grades and be a good student, then a student who might have a similar diagnosis and isn’t doing work must mean they are lazy or could do more if they only tried. For students who have an invisible illness, people might have less empathy towards them in comparison to other students who have a visible disability, or whose disability presents in a way that is more obvious. We think of those kids who are constantly going to the nurse as engaging in task avoidance instead of trying to understand how a disability might cause a child to go to the nurse’s office more frequently. Shifting our educators’ focus from comparison to acceptance, understanding, and education on how disabilities present differently in each person can really help our disabled students succeed. Just because one person can do a task a specific way does not mean another can do the same. Disabled students deserve an understanding of how their disability affects how they learn. Educators, stop comparing students’ disabilities and start educating yourself on ways to help our disabled students thrive.

Dan Szostek

Thanking the Teacher Who Believes in My Daughter With Down Syndrome

Dear Ms. Michele: Thank you for believing in our Abby. Thank you for believing in yourself that you could teach a child with Down syndrome. Thank you for rising to the challenge of communicating with a child who is non-verbal. Thank you for helping Abby soar. “I want to see Abby soar.” Those were the words that you said to us during Abby’s parent-teacher conference. Those were also the words that reduced my wife and me into a pair of glassy-eyed adults in much need of a tissue. As you know, Abby is our only child. After she was born, we spent 78 days in the NICU of Children’s Hospital of Philadelphia. So it goes without saying that we were extremely protective of our little miracle. She was just 3 pounds at birth and still remains on the smaller size on all the growth charts. As an only child, and non-verbal, we were also very nervous about how Abby would handle herself around other adults and peers. When we first met you, Ms. Michele, we told you that Abby was not speaking yet and used sign language to communicate. We explained that she knew about 200 signs at that point. My wife and I did detect an element of worry and concern. We could sense your discomfort with the fact that Abby could not talk. But we totally expected a reaction like that after hearing this type of news. Flash forward to today and you have become a champion for sign language. You were extremely open to learning how to communicate with Abby through signs. Thank you for working so hard with Abby’s speech therapist to not only educate yourself in signing but to also teach your entire class to sign. You have totally exceeded our expectations. To hear the love in your voice when you share stories about the children signing in class and at home warms our hearts. When we talked about our passion for having Abby included in a Catholic School, you shared a story with us about your friend’s brother who had Down syndrome. As a young girl, you wondered why he could not attend school with the rest of the children in the neighborhood. Now, as a professional educator, you wonder what opportunities that young man missed by not being included in the local school. Thank you for sharing your experience; it has fueled our passion to ensure Abby is always included. The school principal told us when we first met her that she never wanted to deny a student a Catholic education because of a disability. It is teachers like you, Ms. Michele, that are making inclusive Catholic schools a reality. Lastly, we would also like to express a heartfelt thanks for the way you and the whole school jumped right in to embrace and celebrate World Down Syndrome Day. We were so grateful to be able to come in that day and read a book about kindness to your students. Seeing everyone, including yourself, “Rockin Your Socks” for Abby and other individuals with Down syndrome, showed us firsthand the caring environment you have created in your classroom. And when the local news showed up to interview you that day, we were so proud! And we will never forget your quote, “No matter what life throws at you. You just got to pull up your pants, put on your wacky socks, and just tackle it!” Amen, Ms. Michele! Amen! In closing, I come back to your words to us: “I want to see Abby soar.” Those words touched our hearts. Those words assured us we made the right schooling choice for Abby. Those words make us forever thankful that Abby has you as a teacher. Sincerely, Abby’s Mom and Dad

Community Voices

Why it is critical to teach children about consent and body autonomy?

<p>Why it is critical to teach children about consent and body autonomy?</p>
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Patrick G. Radel

Setting Priorities When Your Child Receives Special Education Services

When I think about special education from a broader perspective, my thoughts often turn to a dilemma faced by those of us who love and support students with disabilities: How far can (should) we push the school team? Are we supposed to fight every battle? If not, then when and where is it OK to let it go? I think most parents and advocates understand that we need to be persistent about protecting the student’s rights and pressing to get them the supports and services they need. However, we can’t be in a state of constant, total war with schools. Compromise, accommodation, and acceptance are sometimes necessary. So, it’s not a question of if or whether we push, but of what and when and where. In other words, where should you compromise and what is acceptable to accommodate? What should you forgive and when should you fight? There are, of course, rarely any “right” answers or easy solutions. However, I believe there are some principles that might be helpful to guide conversations and shape decisions. Concerns Involving Restraints, Seclusion, and/or Suspension Need to Be Addressed Immediately So-called “aversive interventions” include physical restraints (e.g., “therapeutic holds,” “child control,” “crisis interventions”) and seclusion (e.g., “time-out” room, “quiet” room, “calming” space). Students with disabilities have special protections from school discipline, but are sometimes suspended for “misconduct” that arises from the nature of their disability and/or the school’s failure to provide proper supports. If you have reason to believe restraints or seclusion are being used, and/or if the student is being suspended or disciplined, this should be addressed with the school right away. Restraints and seclusion have been shown to be ineffective in addressing challenging behavior and are harmful to students. You should check the law in your state, and there is pending federal legislation that will (hopefully) help better protect students, but parents and advocates must push to ensure that restraints and seclusion are only used in genuine emergencies, if at all, and never as a substitute for systematic behavior supports. Likewise, suspensions and discipline are not to be used in place of proper skill-building supports and services. You can’t compromise concerns about restraint, seclusion, and suspension. These interventions deny the student access to their education and, as if that wasn’t enough, they jeopardize emotional, psychological, and sometimes physical well-being. If you believe your student has been (or is being) restrained, secluded, and/or suspended, you should insist on an immediate conference to review the student’s behavior plan and examine the supports and services, including whether a behavior expert is needed to help address the student’s needs positively and proactively. You should also consider consulting an attorney or advocate. Concerns Involving Program and/or Placement Need to Be Addressed Under the special education law, the student’s “Individualized Education Program” (IEP) includes an educational placement and describes the supports and services the student needs to receive a “Free Appropriate Public Education” (FAPE). The IEP is created by a committee of people knowledgeable about the student and his disability. The committee must include the student’s parent/guardian. Under the law, parents/guardians are entitled to “meaningful participation” in developing the IEP. If the parent/guardian disagrees with program and/or placement, they have the right to initiate a legal proceeding to have an impartial hearing officer review the record and decide whether the school followed the law. Common questions about placement include: Is the student being educated in the “least restrictive environment,” as the law requires? Is the student being given meaningful opportunities to learn and live with students without disabilities? If not, why not? Is the student attending the school they would attend if they did not have a disability? If not, why not? Is the placement as close as possible to the student’s home? If not, why not? Is the student making meaningful progress in their current placement? If not, why not? Some common questions about program: Is the student identified as a “student with a disability” under the special education law? If not, should they be? Is the student being provided with the supports and services he needs to make progress that is “appropriately ambitious” in light of their circumstances? For example, does the student need (or need more) support from a special education teacher, teaching assistant or teacher’s aide, speech-language pathologist, occupational therapist, physical therapist, school counselor, reading specialist, and/or behavioral specialist? What about sensory supports? What about assistive technology? What about modified materials and/or curriculum? These questions are fundamental. If the program and placement aren’t appropriate, the chances of meaningful progress are low. Decades of research prove a link between the achievement of students with disabilities and the amount of time they spend in general education with typical peers. If you have concerns about your student’s educational program and/or placement, you should request a “program review” meeting with the school team. If you still have concerns after that meeting, you should consult with an attorney or advocate about your legal rights. Concerns Involving Personnel and Personalities Are Tricky What if a member of the school team doesn’t have the right attitude and/or aptitude to support the student? The program and placement are right, but the personnel and personalities are misfits. This is a thorny, and common, challenge. Parents (and advocates) don’t have the power to make staffing decisions, and it is impossible to change an adult’s personality (just ask anyone in a long-term relationship!). So this isn’t really something we can fix with a letter or a lawsuit. What can be done? Here are five suggestions: Talk to a school administrator. There is nothing wrong or unusual about expressing your respectful opinion to a school administrator (principal, special education director) that perhaps Mr. So-and-So is not a “good fit” in terms of working with your student and perhaps another teacher, aide, etc. might have more success. There’s no guarantee your suggestion will be accepted, but it’s usually worth trying. Push for professional development. By law, the IEP can, and should, include “supports for school personnel.” You can advocate for professional development (a polite term for training) for the school team regarding the nature of the student’s disability and strategies for better understanding and meeting the student’s needs. Try some friendly persuasion. In my experience, many (most) educators chose their career because they care about kids and want to help them succeed. Of course, that doesn’t mean every school employee is a creative, committed, patient problem-solver! But at least some of time, at least some educators might be receptive to thoughtful, respectful advocacy on your part to help better understand the student, her disabilities, and the best ways to support her. You could create a worksheet called “Tips for Working with [Student],” invite them to an informational seminar from your local support group, or share a helpful book or article. You can express appreciation for their efforts, celebrate successes, and take care to express disagreement or disappointment in respectful, thoughtful ways that don’t threaten identity or dignity. These efforts are not guaranteed to work (and often they won’t), but it’s at least worth the effort. Have humility and patience. This is much easier said than done, but we do need some humility and patience as parents and advocates. Perhaps the person doesn’t see the student the way we do or responds to him in a way different than what we’d like — is there something valuable in this different perspective? something we can appreciate or learn? Also, to avoid making “the perfect the enemy of the good,” we accept and appreciate that all of us have moments where we don’t meet challenges with the patience, skill, and grace we ought to, and that this is true for educators as well. This isn’t to say that there aren’t some “bad apples” (there definitely are) and it isn’t to say that there aren’t times when you just have to stand and fight (see above); it’s simply to counsel against jumping to conclusions or making overly harsh judgments. Always keep the focus on the student. The person might annoy or offend me, but it’s not about me — it’s about the student. When you’re about to do, say, text, or post something, ask: will this help make my student’s school experience better? Of course, none of these suggestions are foolproof and some days (and some years!) you’re just hanging on for dear life. That’s the journey. We know we can’t accept everything that’s offered by the school at face value. Schools can and do get it wrong and fail our students in profound ways. It’s our job to be advocates, to demand what the law requires, to push for progress. But we also know that a constant battle on every front is not likely to be successful and is certainly not sustainable. In my view, the only real way out of this is through it. We reject “all or nothing,” “fight or flight” thinking and consider each challenge as it comes. We ask – what kind of problem is this? (restraints/seclusion vs. program/placement vs. personnel/personalities); what resources do I have to address it? how important is this to the student’s success? what solutions seem realistic/possible/plausible? And then we can meditate, pray, or ponder the Serenity Prayer and lean on each other for support, advice, and encouragement! I hope this post provides a helpful framework as we seek serenity for ourselves and success for our students.

Laura Smith

The Infinite Possibilities Disability Inclusion in Schools Can Bring

Do you have a child with a disability? If you do, I’m almost positive that at some point in this parenting journey you have felt the pain of wanting them to be happy and included. Do you have a child without a disability? Have you ever been sad when your child felt left out? If you have, I can confidently say to multiply that feeling by infinity and you’ll have a small understanding of how awful it feels when your child with a disability is excluded. Infinity. Infinity. My daughter Ashlynn is now 12 and started middle school. She’s only ever been invited to one peer’s birthday parties. Despite being happy and kind with a smile so bright it could rival the sun, it’s always been a struggle for her to be included. A natural-born socialite, Ashlynn was born with disabilities that have effectively worked as barriers between her and her desire to be social. How much does she long to feel included? I can’t really say for sure but anything I can imagine I’m sure we can multiply by… infinity. Infinity. Infinity. Inclusion is not something new. Disability advocates including special education staff and others have been trying to do this successfully for decades. Though we’ve come farther than when I was in high school, where the kids in special education only had a hallway and never attended general education classes, simply sticking them in general education classes wasn’t including them either. As time went on, we have been learning. Inclusion is not just a place. If it were, kids on the outside would have long been included by now. True inclusion is really a culture. It’s in a culture of people who all viscerally buy into this idea that everyone matters. It’s a culture of many many people beyond disability and diversity advocates who accept we all have way more in common than we do not. So what are the possibilities of an entire culture of people practicing inclusion? I’m no expert, but I think the answer is probably infinity. Infinity. Infinity. That leads me to this new middle school my daughter Ashlynn is at this year. Even just walking through the doors, one gets the sense that this building houses a culture of inclusivity. It’s literally written in signs on the walls and throughout the building. In the girls’ bathroom, positive affirmation notes are hung above the mirrors. I remember washing my hands and wondering if instead of hating my reflection every day as a middle schooler how it might have helped to then read a positive affirmation above it? In hallways, inspirational messages are posted throughout like this one from Eckhart Tolle that reads: “Some changes look negative on the surface, but you will soon realize that space is being created in your life for something new to emerge.” Middle school is full of so many changes. Changes to our bodies, our cognition, and our way of navigating the world. Imagine a child going through that but reading that sign above Ashlynn every day. Could it change how they feel? I don’t really know for sure, but even if it helped one child, it’s worth it. Who knows how many that child would go on to help? Maybe the answer is more like infinity. Infinity. Infinity. Ashlynn has thrived in her sixth-grade year, being included in general education, track, and basketball. Her science teacher modifies her school work on his own. He takes responsibility himself for scaffolding her work instead of relying on the special education teacher. The dean of students who helps with traffic flow in the morning took to Ashlynn “helping” her do traffic duty. Every morning Ashlynn happily smiles and waves on the cars alongside the dean. It would be impossible not to notice how Ashlynn is being included every morning by teachers, parents and students alike. You know what this fosters? Inclusion times infinity. Infinity. Infinity. The year culminated into something called the first annual “Inclusion Spirit Week.” Excuse me? I’ve worked in special education since 2004 and I’ve never ever heard of anything like this. To make it work though, all members of the community had to believe in and practice inclusion, because as I said, inclusion is not a place, it’s a culture. It’s a culture like Spirit Week for school pride! It’s a culture like team spirit. It takes a collective group of people, disabled and non-disabled, advocates and non-advocates who truly believe inclusion matters. To be clear, inclusion week was not just about kids with disabilities. I’m writing about it because my child happens to have one. The week had themes of not letting anyone sit alone, how to be a friend when you see someone sitting alone, and more. The assembly featured games and incorporated all members of the student body participating in games against the teachers. That’s where Ashlynn came in. She was on a basketball team of students working to get more baskets in one minute than the teachers. She was paired with a peer buddy who helped her alongside other general education students working to defeat the teachers. How much did this mean to her? Well to quote Buzz Lightyear, I’m pretty sure it was “to infinity and beyond.” Infinity. Infinity. I don’t say it lightly when I tell you that Ashlynn’s new school has been nothing short of amazing. Reading, writing, and math are important, but so are kindness and mental health. This school offers all of that. What’s the name of such an amazing school,  you might ask? Well, it’s none other than Infinity Middle School. Our gratitude overflows. My husband bawled through the entire assembly. The only way to describe happiness like that is nothing shorter than infinity.

Deena Cardinal

What My Son With Down Syndrome's Shoes Can Teach Us About Inclusion

Our school district is slowly moving towards inclusion as the rule, not just an exception that parents need to fight really hard for. I believe our son Daxon is the first child with Down syndrome that his first-grade teacher has ever had in her General Ed classroom. One of the “problems” she brought to our attention was that Daxon takes his shoes off in the classroom as it was a hardship for her to have to put them back on every time they left the classroom. When she reached out for help in finding a solution to this issue, I told her I could understand why he feels like taking off his shoes is the right thing to do. After all, we have him take his shoes off when we go home, go to other people’s houses, and when we go to camp at our local karate dojo. He is good at following rules as long as they are consistent but has trouble understanding when there are nuances or exceptions. I almost hate to admit it, but my first suggestion was that we could buy shoes that were hard to get off. Turns out, this didn’t stop him and shoes that are harder to remove are also harder to put back on. Ultimately, it made everyone’s life more difficult. Eventually, we got him shoes that were super easy to get on and off. She reported back that while he was still taking them off, he could put them back on by himself, and he was so proud of his independence. I was happy we found a solution, but frustrated with myself for doing the same thing I often see the school district and society doing. Instead of making everyone conform to arbitrary rules, we need to take a step back, re-evaluate what is truly important, and take down barriers. As small and simple as this example is, I will carry it with me when I am looking for solutions to future “problems” and do my part to help build the least restrictive environment that all our kids deserve.

Michelle Tetschner

Supporting Teachers Who Include Students With Disabilities

Dear teacher, I see you! I see you, bending down and speaking calmly to the child who is struggling. I see you, taking the extra time to watch and make sure all the students are paying attention when you are at the board. I see you, walking around gently redirecting students as their minds may wander. I see you, making time to ensure every student has everything they need to feel comfortable and successful. I see you, creating leadership moments for every student. I see you, developing gifts and talents for every student to have a moment to shine. I see you, taking pictures to share with parents. I see you, writing extra notes to make sure parents feel like they know what is going on in their children’s classroom. I see you, having quick meetings on the phone to better help keep parents informed. I see you, helping to initiate friendships and helping all students feel like they belong in your classroom. I see you, taking the time to include all students in your classroom! I see you, with your huge heart, open to helping all students connect and be a relevant part of the classroom. I see your joy when my child succeeds. I see your love in all the little things you do. I see you. I see what a wonderful teacher you are and how beautiful your heart truly is!

Showing Appreciation for Teachers Who Embrace Disability Inclusion

May 2-6 is National Teacher Appreciation Week. My daughter Rachel is 22 years old and has Down syndrome. While she has completed her formal education, showing teacher appreciation is always appropriate. I believe there are some common threads among the good teachers she had that helped make inclusion work for Rachel. I wanted to share some of those common threads. First, I want to say a heartfelt thank you to those who teach and specifically to the teachers who taught Rachel. That includes the support and related services personnel like paraprofessionals, speech, occupational and physical therapists, social workers, and counselors. I believe teaching is the highest calling. I am thankful many of you choose to teach and so many of you have been good teachers for Rachel. Throughout her life, Rachel has had many teachers. While some were definitely a better match than others, she had exceptional instruction and supports. I believe Rachel’s pursuit of her dreams and ability to navigate the world as a young adult is a direct result of the excellent early intervention services she received from Special Kids and Families and the Harwood Center. And it is a direct result of the outstanding teachers she has had. When people inquire about Rachel’s academic experiences, I try to make a conscious effort to tell people that Rachel had some really good teachers in her school endeavors. Rachel’s educational experience had plenty of bumps and train wrecks, but Rachel did have many educators who invested in her and believed in her. I believe that good teachers teach all children. Many of Rachel’s best teachers didn’t have specialized “special education” training. However, they believed that all children could learn and that you find a way to teach them and find a way to discover what they have learned. Accepting that everyone’s learning journey is unique is important. Communication is probably the area of greatest frustration for many parents. One of the most important aspects of Rachel’s positive experiences was the teachers and others who communicated openly. In my blog Communication 101, I talk about the fact that if you do not tell us, we do not know. Sometimes a simple email or phone call takes care of a misunderstanding or clarifies otherwise confusing information. On that topic, communication with paraprofessionals really does help. Paraprofessionals are often the ones who are writing or supervising the writing of the back-and-forth communication and one text, phone call or email can prevent an emotional meltdown from a parent. A willingness to admit what they do not know. I loved it when Rachel’s English teacher called me before school started and said, “I need your help. I want to teach Rachel, but I am not sure that I know how.” She had never taught a student with Down syndrome. Rachel had several teachers brave enough to say that out loud. We can work with that. We can help, and we can do this together. One of Rachel’s teachers told me she was thrilled and terrified when she found out Rachel would be in her class. She knew her from being around her at school, knew us because of our volunteer efforts at school but she had never taught a child with Down syndrome. She told me that she was afraid she would fail Rachel and us. They taught each other and a whole classroom of friends that year. At the end of the year, this teacher of 15 years told me that Rachel was the most memorable student she ever had and changed her as a teacher and her expectations for all students in a positive way. Another common thread for success is teachers who remember Rachel’s IEP is not a list of suggestions. It is a legal contract. There is information in her IEP to help her to maximize her potential, but it also provides information in the form of accommodations and modifications to help teachers know how to best meet her needs. I don’t like having to be “That Parent,” but if teachers don’t follow Rachel’s IEP, sometimes I had to be “That Parent.” Think outside of the box. Rachel’s class was reading “A Christmas Carol.” Her teacher sent me an email (open communication) and said, “I did something different with Rachel on the “Christmas Carol” test. From her class participation, I knew she knew the information, and I thought she could take the same test as the other students. I knew she could tell me the answers, so I didn’t give her a modified test. I gave the same test as the other students, but I let her give me answers orally. She made a 14/15!” The teacher may have been even more excited than we were. Embrace our idea of inclusion. Inclusion isn’t just about the classroom teaching. It is about the process. It is about the classroom interactions. It is about others seeing Rachel and others with intellectual disabilities as capable. The long-term rewards for all students are immeasurable. I suspect the results will include more jobs for individuals with disabilities and the ability to interact with clients and managers who have different strengths, preferences, and abilities. I suspect there is a group of people who will better navigate the course of life because of their experience in inclusive classrooms and communities. Sharing our high expectations. Our best partners in the journey have shared or learned to share our high but reasonable expectations. I have saved emails and notes from many we have worked with who say that working with Rachel and seeing what can happen when you try new things, when you don’t accept the status quo but instead set high expectations has changed the way they educate. Rachel’s team members often told stories of what the other students gain from Rachel. Others have their own little party when they see and hear her demonstrate what she is learning. As a side note, when you see your child demonstrate knowledge they learned from a teacher years before, drop that teacher a note. It means a lot to them. Again, I want to say thank you to the many educators who have shaped Rachel’s life and have joined us on this journey. They are now part of Rachel’s personal “Friends of Rachel Club.” Many, if not most, continue to follow her progress and be involved in our lives at some level. Final note: People tell me they stress about what they will do to recognize/honor/thank their child’s teachers. When you have a child with an IEP, that group is bigger than the average student, and it can be expensive. We did different things for Rachel’s teachers/team from serving an annual appreciation meal to gift cards, plants, and homemade treats. I did a little research and one of the number one things teachers told me they wanted? A card from the student/family. Just say thank you! They will appreciate being appreciated.

Community Voices

We need to shout out and be heard

People without chronic illnesses oftentimes don't get what an impact even small things have on those of us who deal with the hidden conditions each and every day. In the news for the last couple of weeks has been the "Smith Slap". And while we all have our opinions on whether it was fake or real, the fact that Jada Pinkett Smith has alopecia is real and thus means she has both physical and mental issues.

Ask any man that's going bald how they feel about it and you will probably get moans and groans. It's not easy to lose your hair for anyone. But for a woman who historically a big part of their world, their sex appeal, their life in general revolved around hair, it's devastating.

I can tell you that for sure. I am not one that usually has much pride in looks -- there's much more to life and to my purpose than looking pretty. But I lost most of my hair several years ago and have spent thousands of dollars on wigs. In plain terms, I HATE IT. But I don't have the courage Jada has. I can't "let it show".

So, when people start to mock, make fun of someone who has alopecia, as with so many other hidden chronic illnesses, I get really angry. And that's one of the reasons I started Invisible Entrepreneurs. So that we wouldn't be Invisible any more.

This article about Bill Mahar and his attitude towards chronic illness made me sick. One of my first steps in this organization is to let the world know that things like he did MUST BE STOPPED. And it all starts with education. Get out there everyone and let him know what he did was wrong. #Education #like #alopeciaawareness #hiddenchronicillness #chronicillnesswarrior