Ellen Stumbo

@ellenstumbo | contributor
Ellen Stumbo is the founder of Disability Matters, an organization with the mission to encourage every church to embrace disability. Ellen is a national speaker who focuses on issues pertaining adoption, faith, disability and parenting kids with disabilities. Ellen writes for several online platforms including Focus on the Family, LifeWay, MomSense, Not Alone, Mamapedia, Group, The Mighty and the Huffington Post. Her writing also appears in several book anthologies. Ellen blogs at ellenstumbo.com and you can also find her on Twitter and Facebook.
Ellen Stumbo

Myka Stauffer Under Fire for 'Rehoming' Autistic Son

Update June 25, 2020: On Wednesday, June 24, Myka Stauffer issued an apology on Instagram: “I want to first off apologize for the uproar and take full responsibility for all of the hurt that I have caused. This decision has caused so many people heartbreak and I’m sorry for letting down so many women that looked up to me as a mother. I’m sorry for the confusion and pain I have caused, and I am sorry for not being able to tell more of my story from the beginning…. I apologize for being so naive when I started the adoption process, I was not selective or fully equipped or prepared.” She said in order to complete the adoption process she “received one day of watching at home online video training,” and that she felt she needed more training. “I can’t say I wish this never happened because I’m still glad Huxley is here and getting all the help he needs.” She also addressed a major criticism of her and her husband: that they were profiting off of YouTube videos made about and with their adopted son, Huxley. To debunk a couple complete rumors, we did not adopt a child to gain wealth. While we did receive a small portion of money from videos featuring Huxley and his journey, every penny and much more went back into his care. Getting Huxley the care and services he needed was very expensive and we made sure he got every service, and resource we could possibly find. You can read her full apology here. On Tuesday, YouTube vloggers and social media influencers, Myka and James Stauffer, posted a video announcing they were choosing to no longer parent their adopted son, Huxley, a boy they adopted from China in 2017, due to unspecified “behaviors.” According to them, an adoption agency had already found Huxley a new home. For those who aren’t familiar, the Stauffers run a popular YouTube channel with over 715,000 subscribers. While they’ve created content about their other four children, highlighting pregnancy journeys, morning routines and fitness tips, their popularity grew during the process of adopting Huxley, who was 2 years old at the time. His “Gotcha Day” video has over 5.5 million views, and they’ve created 27 separate videos about his adoption journey. Leading up to his adoption, they ran a fundraiser ( From Buzzfeed News : “[Myka]  said  every person who donated $5 would unlock a different piece of a 1,000-piece puzzle, which would, at the end, be a photo of Huxley”), and he was integral part of various sponsorships they’ve received . In other words, the Stauffers benefited financially from Huxley. Perhaps unsurprisingly then, their decision to “discard” a child because of his needs has been met with pushback. Thankfully, the Stauffers were vague about the specific behaviors that led them to give Huxley a new home, citing privacy concerns, but had previously opened up about his various “special needs” and autism diagnosis. Myka had even written about the topic for various parenting magazines, including one entitled, “What Adopting My Autistic Son Has Taught Me.”  According to BuzzFeed news , “She has also positioned herself as an advocate for international adoption in several national news outlets.” Myka Stauffer and her husband James adopted a boy from China and exploited him for Youtube clout. But when he got older they found him a new “forever home” like a puppy that outgrew its welcome and not an actual human being. White people must stop treating us like their own dogs.— Eugene Gu, MD (@eugenegu) May 28, 2020 The situation with myka stauffer is so upsetting. When you adopt a child you act as though you literally gave birth to that child and they’re fully yours. They aren’t a dog you adopted from the pound that you get to return in 14 days if they aren’t a good fit… gross— positiviᵗᵉᵃ (@TeaSpillYT) May 28, 2020 First, let’s recognize that when you choose to put your family in the public eye, you are agreeing to strangers having an inside look into your family. Along with this comes praise and criticism, but also the pressure to be accountable for your actions. As an adoptive mother of a disabled child — one who was also adopted internationally — I understand the challenges of international adoption. Listen, adoption is not for the faint of heart, it is brutal, and it takes years to build a strong foundation for a child who likely has abandonment issues and who, in some cases, experienced abuse. Many kids have post-traumatic stress disorder (PTSD) and are sometimes diagnosed with reactive attachment disorder (RAD) — but make no mistake, the “RAD” diagnosis is a result, or symptom, of trauma. And trauma affects everyone in the family. This is something most adoptive families are intimately familiar with. My main concern is that the narrative the Stauffers presented is one-sided. We know how they felt, but what about Huxley? If the Stauffers were having difficulty, imagine the stress and trauma Huxley was experiencing. As we know, behavior is communication, and just because a child is home, it does not mean that the trauma goes away. Huxley’s behaviors could have been a result of sensory overwhelm or autism, but those behaviors could have been exacerbated because of trauma. Huxley has only been home for two years, and trust and connection to a new family can take years to build. We have to remember that, for children who are adopted internationally, the experience itself is traumatic. Imagine a stranger, someone who doesn’t speak your language, someone who doesn’t eat the same foods you do, someone who may not even look like you, has taken you away from what is familiar — even if familiar was a neglectful and abusive institution. Not only that, but this stranger has now placed an innumerable amount of expectations on you. The expectations to become a son or daughter in a strange land to strange people, and to somehow “fit in.” Never mind the loss they have experienced, first to their birth family, then of their home and customs. That is a lot to place on a child. No wonder so many children struggle to adjust and connect. I say this as someone who, I must confess, was unaware of the unconscious expectations I had for my daughter, and as someone who believed my “love” would conquer all. I was naïve. Adoption was hard for me and my family, yes, but it was much harder for my daughter. The first five years were painful, but I will go down swinging and flighting for a child who had no choice in the matter (she didn’t choose to be adopted by me). I promised her forever, I promised her love and I promised her family. Disruption is, sadly, not uncommon. Being a part of the adoption community means I have watched too many children not find their “forever home” with their original adoptive families. I have friends who have adopted children who were previously adopted by a different family. It is devastating for all involved, but never as traumatic as it is for the child. If Huxley had abandonment issues and struggled to “fit in” with his family, how will he do in his next placement? It is possible he will question how long until the new family also decided he is “too much.” There are many accounts from adoptees and former foster children that lets us know these are real struggles for kids in these situations. And perhaps Huxley will do better with the new family, as can be the case when potential trauma triggers from the first family are out of the picture. None of this takes away the fact that Huxley will grow up, and some day he may watch every single video posted about him. He will know that his first family benefited financially from posting videos and pictures that he never consented to. And on top of that, he will have to deal with the consequences of his pain being made public for views and followers. It saddens me that Huxley will know his first family didn’t want him because he is autistic and they couldn’t “cope.” I hope he is surrounded by people that remind him he is worthy — because he is. He isn’t flawed, he didn’t do anything wrong and he doesn’t need to be different. I hope he finds acceptance, patience and understanding. I hope he finds what “forever” truly means.

Ellen Stumbo

Organizing Paperwork When You Have Kids With Disabilities

If you parent a child with a disability or medical needs, you know all too well how much paperwork there is. Paperwork for evaluations. Paperwork for each specialist. Paperwork for early intervention. Paperwork for school. Paperwork for followups. Paperwork to apply for grants or waivers. Paperwork every six months to make sure your child still has a disability (which is plain ridiculous, but what can we do?). Paperwork, paperwork and more paperwork.How do you keep all that paperwork organized?I am a “pile” girl. I accumulate big piles of paper on any flat surface. (I am not proud of it). So the story goes something like this: “I think that form is in this pile.”Needless to say, having a system to organize all of the papers is needed.A good organization system helps you find exactly what you need when you need it. Imagine a visit with your child’s neurologist. As you talk, the neuro asks a question, you open your handy medical binder (the one you bring to all medical appointments) and you are able to hand over the results of a neurosych evaluation form 11 months prior. It’s all right there.Or maybe you are sitting at an IEP meeting with your child’s teacher and you are able to refer to previous goals and notes.With the complexity of some of our kids, good organization can really pay off. But what are the best ways to keep all that paper in order? We reached out to The Mighty’s parent community and asked how they keep their paperwork organized. These are the four main organization systems they use: 1. Binders and File Folders Almost every parent said they keep their paperwork organized in a three-ring binder or file folders. If you need help getting a binder organized, understood.org has a wonderful guide on how to keep your child’s IEP binder organized. Their guide has free downloads, including an IEP checklist, a school contact sheet, a parent-school communication log and an IEP goal tracker. Many of these forms can be used to create a medical binder too. A binder with tabs may sound simple, but it can really keep you organized. A three-ring binder holds the most important things, (evals, IEPs, etc.), color coded, tabs, the whole nine. You just grab the binder and you’re off to an appointment. We also scan each document and have it on file to email as needed. Excess paperwork (and outdated IEPs etc), is filed in a cabinet. — Nicole S.An expanding file, with about 20 sections for the 20 people we see. Ordered by date, too. Good to take to meetings and medical appointments or assessments. — Amanda J.Medical bills, EOBs, pharmacy receipts, fuel related to appointment travel costs, insurance info, county forms, tax forms all [go] in corresponding files in a drawer. IEP and school-related stuff in a three-ring binder. Medication management has a notebook to bring with to doctor appointments. — April R.Three-ring binders with color-coded tabs for each doctor/specialist and one that has the school’s IEP and updates with the newest reports in the front of each section. I type up a summary after each update or assessment. I also have a speech only binder and an occupational therapy only binder. They both have activities and exercises we are currently working on. [This is] incredibly helpful if you’re applying for other programs, like SSI, for your child. — Hillary Z. Buy the two-inch binders pictured above for $17.99 from Amazon or the expanding file folder for $17.99 from Amazon. 2. Electronic Documentation Many parents scan all documents and upload them digitally so they are easily accessible no matter where you go. Some parents create spreadsheets that help them track just about anything, from medication to therapies and everything in between. Even if you are not super organized, electronic documentation can feel more manageable than piles of paper. You can start by organizing your digital files using simple labels like “medical” and “IEP” and then go from there based on what works for you. After 5+ years of organizing in binders, I started using box.com and organizing by category, like medical documents, therapists, each grade. I save by year, ‘2018, May IEP’ for example. I have hard copies in a binder still but organizing on Box helps because it’s really easy to pull up if I’m looking for something quickly. — Kelli AnnI have a spreadsheet to track labs and keep medical [information]. — Christi H. You can access Google Sheets for free with a Google account or use Box.com, which starts at $5/month. 3. Note and Filing Apps For some parents, certain apps make all the difference in getting organized. The two apps recommended by parents are OneNote and Evernote. OneNote allows you to organize all your documentation across what they call notebooks, sections and pages. You can also add media, clip and save content, tag and even record audio notes and insert documents. Evernote lets you easily scan documents directly to the app (accessible even offline), tag documents and write notes. Both apps make it easy to search your files and find what you’re looking for. All [documentation is] scanned and saved to OneNote, which I can access from any device or computer. It takes a lot of organization to get it started but once you follow a simple routine for each piece of paper, it gets easier. Every medical related document that passes through my hands is scanned with my phone and saved to OneNote. — Star B.I scan documents and keep them in a folder on my phone and in Evernote. — Kayla C. You can use OneNote free with up to 5GB of storage with a Microsoft account or Evernote, which also has a free version. 4. Visual Boards If you’re a visual learner, a pile of papers probably isn’t your most helpful strategy. That’s why some parents said they need to draw out all their kids’ information to really get their heads wrapped around it. Using a big chalkboard or whiteboard can help you make lists and keep track of schedules and reminders where they’re always easy to see. Plus, this puts all the vital information the whole family needs to know in an accessible, easy-to-read place. I use an old-school chalkboard, one for each son, to update the day to day nurses, visiting care coordinators, visiting nursing agency supervisors, etc. It lists my children’s 14 doctors, their therapists’ scheduled visits. It also includes their seasonal extracurricular activities (adaptive sports and recreation), in addition to their vital stats like latest weight and height, teach and g-tube changes. I also have all of their surgeries listed. I updated it regularly. This makes it nice an easy to have those monthly conversations with all of the professional visitors. We go right to the board. — gmjones Buy the calendar whiteboard pictured above for $15.99 from Amazon or the blackboard for $27.99 from Amazon. No matter how you decide to organize your child’s paperwork, parents agreed that having some kind of system can make life a little easier. It helps you save time and energy, helps you advocate more efficiently for your child at appointments, school and in the community, and may give you a little extra time for what really matters — spending time with your family. What do you use to stay organized? Let us know in the comments.

Ellen Stumbo

What Triggers Autistic Meltdowns?

Many people on the autism spectrum experience meltdowns, and contrary to the negative stereotypes out there, meltdowns are not a behavior issue that require an intervention, but coping tools and accommodation. They are a normal reaction to feeling flooded in an overwhelming environment that is usually not designed to take into account the needs of neurodiverse people. Maxine Share, a self-advocate and autism expert consultant, emphasized that unlike what people may perceive, autistic meltdowns are not behavior issues. They can be the result of sensory overload, pent up emotions or difficulty with changes. When the body and mind are unable to process what is taking place — and some individuals do experience physical pain from too much sensory input — kicking, crying, screaming or “shutting down” can happen during a meltdown. It’s important to understand what can trigger one in the first place, from overstimulation or uncomfortable social situations.The Mighty reached out the the experts — actually autistic individuals — to share what triggers their meltdowns. When we better understand our neurodiverse friends, then we can learn to better support their needs in the moment. These were some of their responses: 1. Changes in Routine While there are some truly spontaneous people out there, most of us feel most comfortable when we stick to a routine so we know what to expect. Of course, sometimes things don’t go as planned, which can be stressful. However, the disruption from a change in routine can seem magnified and for some, lead to a meltdown. Changes in my routines. … Understand that long distance travel is dysregulating for me and I need structure and routine. Don’t be upset if I don’t go to your long distance event. Also, don’t try to get in the way of my routines; I will turn you down. — Crystal G.When something doesn’t go the way I planned. — Chris K.Mostly just change within my routine, or just unexpected things happening, new places like visiting a city or place for the first time, conversation with strangers, it goes that far that I’m literally not able to order food at McDonalds. People pressuring me. — jeremy 2. Too Much Noise or Loud Sounds Sensory sensitivity is common among people on the spectrum — it’s overwhelming to be bombarded with too much input from the world around you. While you may have a sensitivity to a variety of things you can see, hear, smell, taste or touch, loud sounds and places with too much noise can be especially dysregulating. Loud sounds are also often found in places that are busy, chaotic and full of people, which can increase overstimulation in the moment. Noise, too many people, and I think the worst one for me is mess. — Kathryn M.Trigger wise it’s all over the place from any loud sound to something [that] disturbs or startles me. — cameronparkAny loud noise or weird smell or if I get too excited [triggers me]. I have a PECS board and an emotion board for when I have a meltdown because I become mute in a meltdown. — kdog2543To many people, too loud, too busy, way too much noise. — Taylor R. 3. Feeling Overwhelmed in a New Environment There are perhaps several ways a new environment can trigger a meltdown. It’s a change in routine, may be full of new people, can cause overwhelming anxiety and might require communication with new people who may not understand neurodiversity. It’s therefore no surprise many autistic people say a new environment can lead to a meltdown. Not understanding when I have truly done or said something wrong/offensive or if the person who is telling me off is just a jerk. Bullying affects me badly. Emotional/mental overwhelm when in new environments trying to cope with it without showing that I am struggling. Others can help by thinking before they speak, and be aware of their prejudices. — Andie K. 4. Places With Too Many People Many public spaces are also crowded — think the mall, train stations, restaurants, popular tourist destinations and even theaters. The list goes on. Places where lots of people gather can be incredibly overwhelming to many of the senses, and overly peopled places can be the trigger for a meltdown. Getting to a quieter, less crowded place can be helpful. I have less meltdowns now as an adult but because I learned to identify the factor that trigger my meltdown. I used to get them quite often. Things like places with a lot of people, around the mall, weddings, at a club still make nervous, too much noise, etc. The one thing that really calms me down is taking breaks that last like 10 or 15 minutes, just being by myself in a quiet place. — Mony P.I get meltdowns quite often when someone’s yelling doesn’t need to be directed at me while I am not able to understand why. Or when I get frustrated with a given task and am not allowed to ask for help. In other cases I usually get meltdowns when I am expected to hold a presentation in front of unknown people or in general too many people. — Severus 5. Unmet Basic Needs It’s hard to be at the top of your game when you’re missing out on some of your basic needs, like food, water and sleep. It can be distracting or distressing when you feel discomfort or tired, and that makes you more vulnerable to triggers in the world around you. This means meltdowns can be more likely to happen during these times. Meltdowns are caused by tiredness, lack of food (must eat snacks every two hours) too much people contact, dehydration, etc. The key to fewer meltdowns is balance: a good eight hours of sleep, nutritious food with protein, water, peace and quiet. — Sally F. 6. When People Aren’t on Your Level Most neurotypical people don’t know much about how to accommodate autistic people in conversation (or anywhere, really). Often, you’ll be waiting for people to catch up to you, and that’s frustrating. When people aren’t quite getting you or you’re in a situation that’s generally a mismatch — like a job that requires lots of social interaction — the distress or overwhelm can easily lead to a meltdown. Being ridiculously outspoken has helped to get me a position as head of discipline for a High School of over 600 students. You can imagine in that situation that meltdowns are predictable, primarily because of the amount of interactions I have to have daily. I am also a hyper intellectual which makes me see things ‘first,’ in a manner of speaking. When I see what other people should be seeing, I will often wait for them to come to the realization within a situation and when they don’t, I can get anxious. — Darin J. 7. Sensory Overload Extra sensitivity to the world around you is a hallmark of autism, so any time the senses get overloaded or overstimulated, you might get flooded and have a meltdown. Overstimulation can be too much light or noise, crowded spaces or too many things going on at the same time. Sensory overload is one reason many public places, like football stadiums, zoos and theaters, are finally creating sensory rooms. Too much light. Too many people in a room. Too many stupid conversations about nothing. Too much noise including certain kinds of pop music. I just can’t take it. — Susan B.Overstimulation for sure! — Diana D.Triggers? Too many things to do, not feeling well, sensory overload, being pressed for time, trying to handle an emergency, too many things going wrong, too much time around people.” — Wendy B. 8. Specific or Small Triggers Sometimes, the cause of a meltdown can be something that looks small and super specific. Maybe it’s a minor change to your routine, a missed word in a conversation, the texture of one kind of vegetable or one particular pop song on the radio. While others may not think a “small” trigger is a big deal, it can be majorly overwhelming. Trigger wise it’s small things for me. Small changes, [like] a route I’m used to changing. Whether that be a misunderstanding, small comments about me. A specific smell or texture of something, high pitched noise, not being able to find stuff.” — Cara 9. When Things Feel Out of Control Having a particular a routine or building a certain amount of predictability into your day is comforting. However, if things start to feel out of control or chaotic, that can cause anxiety, overstimulation or sensory overload and lead to a meltdown. It can also feel out of control when a series of smaller things seem to go wrong all at the same time. What triggers me to feel extremely uncomfortable in my body and head is chaos, yelling or if there’s a lot of movement at the same time that it’s loud. So if I go somewhere chaotic, I try to just plan for three hours. When it gets hard I leave for a bit, I bring a sensory bag and I always take my own car. — Veda F-PWhen too many unusual things happen at once and shatter my belief that everything is alright. — marlynmorgan 10. Feeling Trapped Maintaining comfort in your physical space is important. When that space is compromised somehow, it may lead to a meltdown. This could mean feeling physically stuck in a small room, trapped into a conversation or when someone is too far into your personal space. This is doubly true is the invasion into your space makes you anxious. Being stuck, most of all. Also when someone harangues or just hovers over me physically. My anxiety is thus, triggered. — Michele V. 11. Uncomfortable Social Interactions Social interactions can be exhausting, confusing and uncomfortable on their own. For some people, certain types of social interaction can also lead directly to a meltdown, especially when there’s more than one person coming at you at once. The social discomfort can also look like being interrupted too often or needing to change topics too many times in the same conversation. People coming at me from all sides, for example in trade shows, I just freeze and start sweating and palpitating, my skin on fire, about to burst into tears whilst internally screaming at myself to stop being stupid and just move. My friends say, ‘Well just move out the way then,’ out loud, not sure they get how painful it is and that I can’t do that. — AmandaUsually for me, it’s a lot of people at once, or repeated interruptions from people when I am trying to talk to a particular one or two people. Having to make my brain jump from topic to topic over and over again leaves me shaking, if not worse. I’m really lucky with the people around me, some of whom recognized my ASD before I did! — Maura For more on understanding meltdowns, check out the following Mighty stories: Autistic Adults Share What Could Have Helped Them During Meltdowns as Kids Meltdowns Come in Different Forms, but They Are Not the Same as Tantrums This Is Why Some Kids on the Autism Spectrum Can Have Meltdowns After Their School Day

Ellen Stumbo

Autistic People Share How to Talk to Someone With Autism

Perhaps one of the most commonly recognized characteristics of autism is difficulty with communication — at least the way neurotypical people communicate. Oftentimes, struggling with neurotypical language development is what alerts parents to seek an autism evaluation for their child. Even as adults, many autistic people struggle with communication when interacting with neurotypical individuals. Many misunderstandings can happen when, as neurotypicals, we expect or assume verbal autistics can understand us using the same patterns of communication we are used to. Maxine Share, who is on the autism spectrum and also works as an autism consultant, told The Mighty that, “regardless of verbal ability or intelligence, autism, at its core, is a communication difference.” It is important to note that expressing language can be a challenge, whether someone is a verbal or nonverbal person. “When we are anxious or unprepared, our communication differences stand out, leaving us out of sync with social expectations, misunderstanding intentions, instructions and expectation, and literally lost for words,” Share added. She explained the result often leads to autistic people being shamed for the gap in understanding. It shouldn’t be on autistic people to close the communication gap. To truly honor neurodiversity, neurotypical people must take steps to understand how their autistic friends, peers and children communicate best and learn to think outside of the narrow limits of a neurotypical view of communication. A conversation, after all, is a joint effort. To gain additional insight, we reached out to our Mighty community of autistic individuals and asked them to share what they want people to understand about their communication differences. These were their responses: 1. New Situations Make Communication a Challenge For many people, talking with your best friend is a lot easier than having a conversation with someone you just met. This is definitely true for many people on the spectrum. A lot of neurotypical people may have never spoken with an autistic person before, so it’s more likely there will be communication difficulties at first. It may just take some time to adjust — for both parties. As a person with Aspergers syndrome, I find it a challenge talking to new people one-on-one and can hesitate, be wary and stammer. For example, I am used to having the same support workers and can happily speak to them but make no eye contact, but if a new carer is brought in it takes a while to adjust and I can be wary and unsure, not talking much — change to routine is something I dislike. I communicate better with those I know and close family. On the phone I find it hard to talk to people and can get upset as people get impatient when I hesitate. — Sarah B. 2. Don’t Assume Abstract or Hidden Meanings According to autistic people in The Mighty’s community, you don’t need to do gymnastics looking for hidden meanings or abstract thoughts when you’re in conversation with someone on the spectrum. Make sure you hear everything the person has to say before jumping into the conversation and keep everything concrete. And don’t get offended if a message comes out very direct. I very rarely have a hidden meaning behind what I’m saying, if ever. It’s better to not read too much into what I’m saying. — Emmie W.It is hard for guys with autism to think on the abstract, please take your time and listen to what the whole idea of the message is before thinking that you already know what they are trying to tell you. You kind of have to decipher the message. — Mario B. 3. Be Specific About What You’re Saying While it might seem simpler to use a shorthand phrase to convey meaning, it’s often best to be specific with what you say. This could mean making sure to provide all the relevant details, such as what time to meet, when, where and what time an event will end. Don’t be vague — be concrete and literal. If you’re not sure you were direct enough, ask if there’s anything you can clarify and make sure to leave space for thinking time. Clarify everything. For example, ‘We are going to mall today’ does not have enough information, you should add exact details of when, how, with how many people, how long it will last etc. And please don’t ask open ended questions. If we talk too much about our interest, you can kindly say to stop, but please don’t roll your eyes or make jokes about our interests. — teslaI have difficulty understanding vague directions. Please be precise, specific, and direct when talking to me. And please be patient with me. Often times, I don’t understand something the first time around, and will need a little time to ‘translate’ the information so that it makes sense to me. — lemonpoppyseed99 4. Talking About Feelings Isn’t Easy Emotions are hard. While a lot of people have trouble explaining how they’re feeling, this is magnified for many people on the spectrum. Feelings and emotions are usually vague or abstract concepts, so translating that into words isn’t intuitive for many autistic people who prefer direct, concrete forms of communication. (And just because feelings are hard to talk about, it doesn’t mean autistic people don’t have feelings or empathy.) Just because I’m verbal does not mean I can explain my feelings. I do not understand why I am different but I know I am. Inclusion is my right but not necessarily something I am able to easily do. — Toryann 5. Respect Nonverbal Communication, Too There are many ways to communicate, and words are only a small portion of the equation. The exact numbers vary, but up to 80 or 90% of all communication is nonverbal, whether someone is considered verbal or nonverbal. Accordingly, pay attention to nonverbal forms of communication, which could include everything from tone of voice, facial expressions and gestures. This goes both ways — autistic people use these clues to help understand meaning too. People need to understand that just because someone with autism isn’t speaking words doesn’t mean they aren’t communicating. Communication isn’t only verbal, it’s also nonverbal. It doesn’t mean they don’t understand you. — Samantha B. 6. Eye Contact Isn’t Everything Holding eye contact is taught in almost every public speaking class, but it might just be overrated. Sustained eye contact with someone, especially someone new, is very difficult. So just because someone isn’t making eye contact does not mean they aren’t listening or they don’t care. Dropping the expectation for eye contact is a simple thing that can make communication more comfortable. Just because I’m not making eye contact doesn’t mean I’m not listening. — The Bid 7. Be Patient When Communicating Getting a message across as fast as possible is useless if the other person doesn’t understand what you are trying to convey. Be patient. People on the spectrum may need a few extra quiet moments to process what you said, especially if communicating in a setting that isn’t ideal, like in a large group or on the phone. Value truly sharing or receiving the message, even if it takes a little longer or looks different than what you’re used to. Please understand that I’m often very nervous. So be patient. — AlyonaWhat I need is for people to take long enough to give me a chance to process their comments and react. It is very hard for me to participate in group conversations with people talking over each other, so I don’t think I come across well in those situations. As a grade school teacher observed, I am great with one-on-one interactions but less good at getting my point across in a group. It helps if there is relative quiet and few, if any, interruptions. The kind of parties I like are ones where you can have real conversations with one or a few people. I am a good communicator. I communicate best in writing. If you take the time to get to know me you will get to know a wonderful person. — Lindsey H. 8. Talking Can Be Hard Work Communicating in a neurotypical world can be exhausting for autistic people, so respect if your conversation partner is overwhelmed or just flooded and can’t speak for a bit. You can honor this by being patient, using direct language with details, leaving process time in the conversation and understanding that breaks and silence have a place at the table too. Please understand that sometimes I shut down… just draw a blank. If I don’t answer a question or continue to contribute to the conversation it’s because I, temporarily, cannot. — Phyllis P.Speaking is hard work. Hyperverbal autistic persons might mask that, but it is still hard work. — Delphine D. 9. Meet Autistic People Where They Are One of the best ways to conceptualize the communication differences between people on the spectrum and neurotypical people is that autistic people communicate differently. For this reason, just like in any other setting, it’s important to meet people where they are and get educated on how to be more accommodating to people with neurodiverse communication styles. Autism is like speaking a different language. We don’t understand things all the time because ‘people’ isn’t our first language. Even when we understand, most of the time it’s exhausting to constantly be speaking in a different language. When our emotions are high, we revert back to our own language. It helps when people try and learn ‘autistic’ so we can sometimes speak our native language with someone. — EdenThe greatest challenge is getting the neurotypicals (NTs) to know there is a challenge in the first place. We (the autistic) know that we’re misreading NTs and missing things they want us to understand. Many NTs assume that they can understand us, using the communication skills that have served them so well communicating with other NTs. Generally speaking, they’re usually wrong. This is where things like the myth of the emotionless or unempathetic autistic come from, people who don’t realize that they don’t understand us. — lostithacanThe challenges go both ways. People with neurotypicalism don’t understand us either. They think they do, but they have challenges in understanding autistic communication. For example, my direct, honest, clear communication will be taken as a personal attack and I will be accused of ‘being mean’ by people who claim they understand autism, yet demonstrate that they don’t by using functioning labels and person first language (both of which most autistic people hate) and by doing this very thing when we point it out to them. Google ‘Double Empathy Problem.’ — Cat B. Join the conversation here: What do people need to understand about the communication challenges of individuals on the autism spectrum?  #Autism  #AspergersSyndrome For more on autism and communication, check out these Mighty articles: Why Your Verbal Autistic Child Sometimes Cannot Speak I’m Not What People Imagine When They Hear ‘Autism’ New Study Agrees Harmful Autism ‘Functioning’ Labels Are Harmful Why My Autistic Teen Struggles to Chit-Chat

Ellen Stumbo

Back-to-School Checklist for Kids With IEPs

My youngest daughter has Down syndrome and she starts middle school in about a week. I’ve never been more anxious and scared about school!I already like her special education teacher. I believe she is going to push my daughter more than other teachers have in previous years because she believes in her potential. But my daughter will also be in some general education classes, going from class to class and taking the bus for the first time in her schooling days.I always prepare for the new school year, but this year I am taking it up a notch. I should add I already have another middle schooler with an IEP, but she can tell me what happens at school, if someone is bullying her or if a teacher is not following her IEP — something my daughter with Down syndrome cannot. I created a checklist to make sure I have all my “ducks in a row” and I hope this is helpful for you too. I even made a PDF so you can download it and keep it handy during your IEP meetings. Download the PDF 1. Create one-page profiles. These are a must-have. Not all teachers read the IEP (so problematic) so this is the “IEP Lite” version they need. I make them for each teacher my kids have. You can create one too using this easy template. 2. Set up a time to visit school before classes begin. Most schools usually have an open house for students to find their lockers and classes, meet their teachers and get their schedules. These are great, but they don’t work well for my two kids with disabilities who need one-on-one time with teachers and an opportunity to ask questions and get acquainted without the overwhelming sensory experience of an open-house. 3. Get contact information for each teacher and therapist working with your child. I ask for names, emails, extension numbers (if they have them), best way to contact them and how long it takes for them to respond. I also ask them for a favorite candy bar or drink and send them as “small gifts” throughout the year. 4. Get a copy of your child’s schedule. I like to get a copy of my child’s schedule ahead of time and I have it in a visible place at home. If anything comes up I can see at a glance where my child is supposed to be at and I can follow up if, let’s say, my child is spending more time in the special education classroom than is specified in her IEP. It has happened a few times… 5. Gather the who, when and where of your child’s schedule. I learned I have to be very specific about my child’s schedule to get answers. My daughter doesn’t have a one-on-one paraprofessional, so her aides change throughout the day. I need to know who is with her and when. I need to know when she is being pulled out for speech, who is taking her and where in the building they are going. Those details are so important. 6. Ask about modifications for each class. I wish I started doing this earlier and was more proactive about it. My child needs modifications, and not just a stool by her feet because she is shorter and needs that support. She needs curriculum modified so that it is accessible to her and so she can learn the material/concepts. The reality is, not every child has modifications or adaptations set in place by the time school begins… or at all. This should never happen. 7. Ask who is in charge of modifications. Chances are the special education teacher is in charge of modifying curriculum for each class. (Shout out to special education teachers who have to do this for every general education class each of their students are in.) However, general education teachers are responsible for making sure these modifications are happening when the student is in their class. Bring this up before school begins because these modifications should be set up by the first day of school. 8. Ask who your child will be sitting with during lunch. It may sound silly, but lunch is kind of a big deal. Who our kids sit with should be their choice. There are schools that sit all special education students together during lunch, automatically excluding them from their peers during one of the most social times during the school day (especially for middle school and high school students). Some students do prefer to sit together, and if it is their choice, I am all for it, but this is a great opportunity to work on some of those social skills and interact with their “typical” peers. If your child has a good friend they like to sit with during lunch, make sure the teachers/aides know. With busy school cafeterias, they may need help finding their safe friend. 9. Find out what materials the school is providing. Most school-supplies lists include things like pencils and scissors. For my kids, some of these tools need to be adaptive. For example, my daughter needed adaptive scissors for a while, and even now both my girls benefit from “chunky” pencils and notebooks with different lining. I found out several years ago that school provides some of these adaptive materials for our kids. 10. Make a plan about what goals to work on at home. I have to ask for my child to get homework every single year. Just because she has an IEP doesn’t mean she shouldn’t be creating the habit of working on skills or goals. I want her to learn that she has to work on those skills and then show her work. It is a helpful skill as I expect her to be as independent as possible and be able to keep a job. Training starts now. Some skills may be related to speech, practice her reading or creating presentations. Her sisters have homework, she should too. 11. Determine class expectations. If all kids need to give a presentation about the novel they read, I am a firm believer my kid should do the best she can to do the same. Maybe she reads a different book, but she should also be given the opportunity to give a presentation. What would you add? Download the PDF checklist. Here are other posts that may help you get ready for this upcoming year: 15 Questions Every Parent of Kids With Disabilities Should Ask Before School Begins What to Do the First Day, Week and Month Back to School When Your Kid Has an IEP If Your Child Has an IEP, Make Sure You Give Their Teachers This

Ellen Stumbo

Common Concerns Parents of Teens With Down Syndrome Have

My daughter with Down syndrome is 11 years old. As we get closer and closer to her teen years and the changes that are ahead of us, I find myself wanting to talk to other parents about what to expect during those magical years. A teenager is a teenager, regardless of disability or diagnosis. It means our kids go through puberty and have hormones the same as everyone else. If your teen has an intellectual disability, it can be harder to manage their personal care or explain why they are not able to, for example, get their driver’s license when they turn 16. The reality is, as our kids get older, the less likely we are to share our parenting experience. It makes sense, our children grow up and their privacy becomes the main priority. But along with that, there isn’t much “out there” about having teens with Down syndrome. I reached out to parents of teens with Down syndrome to ask some questions about the teen years. I used their replies to put together a list highlighting the most common concerns parents have when raising teens with Down syndrome, along with some resources to help parents educate themselves and their teens. To protect the privacy and dignity of the teens with Down syndrome, we’ve made quotes from parents anonymous. Raising teens with Down syndrome for us is an unusual mix of typical teenage stuff and child-like behavior, wonder and love. It’s incredibly hard, ridiculously funny and these teens have made our lives so much richer. The difficult things we deal with are by far outweighed by joy. 1. Puberty While the bodies of teens with Down syndrome mature at the “expected” time, their development in other areas may lag behind. For some, these physical and emotional changes may be hard to understand. Teens may struggle to understand when it is appropriate to talk about these changes and who it is appropriate to talk to about them. It may be hard to understand certain topics are private and don’t need to be brought up with, for example, the hairdresser. Like with all teens, it is important to teach kids with Down syndrome what to expect during these years, especially as their body changes and they begin to explore their sexuality. Personal hygiene care becomes a priority for boys and girls alike, and helping them become as independent as possible in this area is a must. It may take a little longer for them to get it, so keep modeling and teaching. For girls, this is the time when they get their period and have to learn how to manage it. It is important for them to know beforehand what to expect, why it is happening, and what they have to do when they get their period. Thankfully, there are some great resources to help kids with Down syndrome and intellectual disabilities understand the changes taking place in their body. “The Boys’s Guide to Growing Up: Choices & Changes During Puberty” and “The Girl’s Guide to Growing Up: Choices & Changes in the Tween Years,” written by Terri Couwenhoven, a sex educator who specializes in working with people with intellectual disabilities, are perfect books for our kids. They are written at a third-grade reading level so preteens and teens can read them on their own or with the help of an adult. They are matter-of-fact, reassuring and feature realistic illustrations and learning activities. 2. Dating My daughter will be 19 tomorrow. She’s a senior in high school. She’s always been very involved and included in everything at school and Special Olympics. She has a lot of friends with and without disabilities. She has a boyfriend who she says she’s going to marry. They’ve been dating for over nine years. Almost every parent said their child was interested in dating, which, again, is common for just about any teen. If your teen is interested in dating, the book “Boyfriends and Girlfriends: A Guide to Dating for People with Disabilities” is a great resource for teens and adults with intellectual or developmental disabilities. It explains the dos and don’ts of dating and validates their normal, age-appropriate desire for companionship and romance. Along with dating, many teens express a desire to get married. The season 4 finale of “Born This Way” brought us Cristina and Angel’s wedding. Cristina is a young woman with Down syndrome. For the many parents who may wonder, “Will my child ever get married?” this episode opened up dreams and possibilities for future generations of people with Down syndrome. Show your teen examples of couples with Down syndrome. Kris Scharoun-DeForge and Paul DeForge were married for 25 years before Paul passed away, and Tommy and Maryanne Pilling have been married for 24 years. 3. Sexuality Teens with Down syndrome need to get “the talk” just like any other teens going through puberty. This is especially important since people with disabilities are more at risk of being sexually assaulted. Mighty contributor Jen Pearlstein wrote in a post: Sexual assault against women is pervasive and tragic. Disabled women are even more at risk, with estimates indicating women with disabilities are three times more likely to be sexually assaulted. In their piece investigating sexual assault in women with intellectual disabilities, NPR found that women with intellectual disabilities are more than seven times more likely to be assaulted than those without disabilities. According to Disability Justice, 83 percent of women with disabilities will be sexually assaulted in their lifetime, yet only 3 percent of sexual abuse involving women with intellectual disabilities is reported. We have to let our kids know they control their bodies and teach them which types of touching are appropriate. These conversations are essential and will help kids understand what sexual abuse is and what constitutes an abusive act. It is imperative we provide them with the tools and confidence to know what to do if they ever find themselves in an unsafe situation. Teaching teens about sexuality also teaches healthy boundaries. There are some resources available to help you navigate this topic. The National Down Syndrome Society has an article that addresses sexuality and Down syndrome. Terri Couwenhoven’s book, “Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals” is also a great resource. 4. Friendships My daughter is 14. She dresses 14. She has an attitude of a 14-year-old (Lord help me). She likes music and boys and shopping and YouTube and texting. She also gets her heart broken when the drama of teenage girls takes over. It’s hard for her to understand why someone may not like her or chooses to be unkind. I feel like maybe it’s easier for typical girls to understand why it happens though it doesn’t hurt any less. Never easy to see your child’s heart breaking and not be able to fix it. The “teenage years” is when friendships become quite important (and parents become annoying). It is no different for teens with Down syndrome. However, one of the biggest challenges teens with Down syndrome may face is the lack of true friendships. While typical peers may be friendly at school and school-sponsored events or activities, those friendships don’t always extend beyond school. Several parents shared that their teens with Down syndrome don’t get invited to parties or to “hang out” with other kids. This, in turn, is devastating and isolating for their children. Teens with Down syndrome who have speech difficulties may face even more challenges, as Mighty contributor Kathleen Palmer shared in a post: He’s a very bright kid, but the differences in working memory and his speech delay mean he needs more repetition to remember certain things, and a lot more time to finish certain tasks. The speech delay, in particular, is very frustrating for him. And frustration in a kid with a speech delay looks different. Where my neurotypical son would deliver an angry, 5-minute soliloquy about whatever is bothering him, my son with Down syndrome gets stuck sometimes, unable to express his thoughts or relay a story about something that happened to him, and then he shuts down. His peers don’t always understand it, and that creates distance. While the documentary “Far From the Tree” focuses primarily on parenting kids who are different from the rest of the family, the biggest takeaway I got from it (which had me bawling) is the realization of how imperative it is for our kids to be connected within their own community. I cried as three adult men with Down syndrome, who have been roommates for 13 years, sat outside on their porch sipping coffee, and said, “We are more than friends, we are like family. A family of friends.” They wiped their tears as they put their fists together. A team. Our kids need their team, too. While it is important for our kids to have typical friends, let’s not forget some of the best friendships they will have will be with the people within their own community. We saw this through “Born This Way,” as we watched the group of friends move through life together. As a final note, while parents may not typically arrange a time for teens to “hang out,” don’t be afraid to reach and make those connections happen. Who does your teen talk about? Who does your teen call a friend? 5. Driving A few parents commented their teen wants to drive, yet they are not sure this will be an option for them. The overall question usually is, can people with Down syndrome drive? Some can, however, it is not common. “Born This Way” addressed this issue when both Steven and John wanted to drive. From our recap: Steven is studying to get his driving permit and his mom and dad are helping him. He attends a comprehensive driving evaluation, where he will be assessed to see if driving is a realistic option for him. The driving coach checks his vision and reflexes then they do a behind the wheel assessment. Steven is very cautious, but he does a good job behind the wheel. The coach recommends Steven have his peripheral vision checked. After this experience, Steven decides he needs more time as he is considering the consequences and responsibility of driving and does not know if he is ready yet.Like Steven, John wants to drive. John’s sisters are proud of John’s desire to drive, but they aren’t sure it is a realistic option for him. John is bothered and feels his sisters do not believe in him. John also has a comprehensive driving evaluation. The coach believes John may have a visual field cut. After the portion driving behind the wheel (John seems to like speed) he tells John he has some problems to overcome. John needs to see an eye doctor but also an occupational therapist to work on some skills. The instructor advises John to take it slow. Some individuals with Down syndrome are capable of driving. Mighty contributor Linda Biermann shared her son’s experience in one of her posts. The family owns a farm, and driving is quite important for farming. When her son was very young, they bought him a child’s battery-operated John Deere tractor. He very eagerly drove the tiny car around the yard, running into this and bumping into that. In time, he wasn’t running into things anymore and my husband began adjusting the speed governor bit by bit, letting him go faster and faster. Before we knew it, he was safely zooming from one corner of the farm to the next! He was driving before he’d even mastered speech and could completely articulate his dreams.Ultimately, my son moved on from a child’s toy to actual farming implements. He acquired his driver’s license at age 18 after passing both, a written and driving test for the driving examiner. Today, he drives independently where he wants and needs to go. We have an agreed upon safe-zone and he communicates his location with every stop to keep us informed of his whereabouts. He doesn’t like to drive in the bigger cities and asks us to take the wheel in those places. He’s a very safe and capable driver. I have a friend whose adult son with Down syndrome drives a golf cart around their neighborhood. It is not a regular car, but he is glad to be able to get around independently. Ultimately, being able to drive (or not) depends on each individual person. Having a comprehensive driving evaluation, as shown in “Born This Way” may be a good first step if your teen is determined to drive. 6. Sports and Extra-Curricular Activities Several parents mentioned how important it is for their kids to be involved in activities where they find success. It is not only important for them to stay active, but it encourages a sense of belonging and builds self-esteem. It creates community for them. My son is 19 years old and is absolutely amazing. He played football for his high school team and wrestles on the regular high school team. He wins matches and gets pinned, too. He runs the football, and has scored touchdowns. But the amount of people he inspires to be better is so amazing to be able to watch unfold. His peers truly love him and have accepted him into their groups.My teen with Down syndrome is an active girl. She plays piano, soccer, takes gymnastics and volunteers in the community. Additionally, she just finished her third theatrical production at our local community theater. She dreams of going to college, having a boyfriend and living independently.Homebodies… some of my teens with Down syndrome can very quickly become homebodies, making it a challenge to get them out of the house doing activities. I’ve found with our homebodies that once we have them out of the house they usually have a pretty good time. Another thing to keep in mind is that people with Down syndrome tend to have slower metabolisms — which can result in weight management challenges —  so staying active is important. 7. Independence I recently watched a video of another mom with teens who have Down syndrome and realized what it looks like when I do too much for my kid. I need to do less and expect my kid to do more by themselves. I didn’t think them capable. I reminded myself to ‘expect success,’ and wouldn’t you know, my kid is very capable! Teens with Down syndrome want to be independent just like other teens, which can be tricky, as many of them require extra supports that most kids their age do not need. Finding that balance may result in some frustration from teens and their parents. Parents are faced with, “How much independence can my child realistically have based on their developmental disability?” While teens may be wrestling with the awareness that they are different from their peers and question, “Why am I different from my friends?” The reality is, at some point, as parents we need to begin to let go while still supporting our kids so that their efforts for independence — no matter how small — can be successful. We also have to keep in mind that independence for our teens with Down syndrome looks a little different than it does for typical teens. Most of us who parent kids with Down syndrome will continue to be directly involved in their lives throughout their adult years with some parents applying for guardianship once their teen turns 18. We do not know what the future holds, but during the teen years, we can create a plan to help our children become as independent as possible. A great resource is, “ The Down Syndrome Transition Handbook: Charting Your Child’s Course to Adulthood” by Jo Ann Simons, MSW. Guardianship is not the only solution. Disability advocates promote an alternative called “supported decision-making.” Supported decision-making maximizes independence and promotes self-advocacy and self-determination for individuals with disabilities and is a good fit for many people with Down syndrome. If you are interested, check out the options for supported decision-making in your state. 8. Boundaries Hugging. People it is not OK for your teens to hug everyone. No, it is not OK for them to hug camp counselors, coaches, teachers or acquaintances at school (friends is a totally different thing). My kid shouldn’t get a pass just because he has a disability. If a girl in high school wouldn’t want some random guy coming up and giving her a hug, my high school age student with Down syndrome shouldn’t be allowed to either, just because he wants to. Boundaries should be taught before the teen years, and I believe most of us can agree with that. Not everyone is a friend, and there are many people who may try to take advantage of our kids. Many parents expressed issues with “hugging.” While it is a common stereotype, it is true that many of our kids are known to be huggers. Personally, I had this written in my daughter’s IEP. She loves hugging her friends and teachers but was also constantly being asked for hugs by friends (I cannot blame them, her hugs are what we call “magical”). However, is this an appropriate behavior for a teen or an adult? Also — and perhaps most important — this uninhibited display of affection can make my daughter more vulnerable to sexual assault. I wanted her to know from an early age that hugs are only for family and close friends. A mom shared her teenage son lost his job as a bagger at a grocery store when he hugged a new employee who felt very uncomfortable by the unsolicited hug. As we approach the teen years, I am encouraged to know we are not alone. There are others who have gone before us, and the Down syndrome community is strong and supportive. My daughter is already into makeup, so I wonder if she will be the teenage girl who spends hours getting ready before school to make sure she looks fabulous!

Community Voices

When I Stopped Trying To Recover My Son With Autism

I want to tell you all a story. It’s about a mom who had two babies twelve months apart. And the second baby was different. He was sad or mad almost all the time. He did not sleep…ever. He gagged on even pureed baby foods. He could not hold his own bottle. He could not pick up food from his tray even as he got older. He could not crawl at nearly eleven months old. Transition from one room to the next or trying to remove a toy from his hand to bathe him would cause severe meltdowns.

I was perplexed. I had just done this and it was not this way. My husband was on a six month deployment. I could describe the hardships and the differences, but he was not there to see how hard this baby was! I initially thought he was in physical pain or that some physical ailment was making him so miserable all the time. I took him to allergists. I took him to dentists. He had cut four teeth by only four months old…was that the problem? I asked the pediatrician to watch videos. I kept telling all of them something was different. I was told by all of the professionals that some babies are just harder.

Fast forward to about fourteen months old. He still did not have any words. He did not respond to his name most of the time. He walked in circles a lot and got awfully mad when you stopped his process. He could not go into stores without screaming and bashing his head on the floor or cart.

A doctor finally referred us to Early Intervention. We were told he was behind in speech and fine motor and that he has a lot of sensory issues. One therapist called it SPD (Sensory Processing Disorder), but no one had used the “A” word. In fact, when I questioned professionals about autism I was always told that he made eye contact and therefore was not autistic.

So I latched on to the only terminology I had been given and joined every SPD group there was. Many of these overlapped with autism groups. And some parents pointed out that most of the time SPD is just the precursor to an autism diagnosis. I met a friend in one of these groups and our sons were about the same age. With some of the same struggles.

We had read about the Gluten Free Casein Free diet that was supposed to work miracles. She tried it and kept it going for awhile. I tried it for a few months but saw a miserable kid who seemed even grumpier and was starving all the time. I saw no improvements. She tried to talk me into essential oils. Initially just offered them as a way to help him sleep. The smells made him gag, so I knew that wouldn’t work. Eventually she was telling me I should be rubbing it on his throat before speech therapy or even have him ingest some of it. That did not seem like a good idea to me, but to each their own.

Our kids both got an autism diagnosis. My son was diagnosed as severely autistic. Her son was diagnosed with #PersistentDepressiveDisorder NOS.

Many in the internet groups I was in were very early on in their journeys. It seemed like everyone was throwing treatments at the wall just to see what stuck. I remember at one point being told that parents might as well try whatever as far as biomedical stuff went…it couldn’t hurt. Many in the groups focused on gut health and heavy metals and a number of other potential causes. There were detox options and probiotics and chelation therapy and hyperbaric chambers. For the most part I just absorbed it all and some of it I read in disbelief. In the meantime, we went to all of the doctor recommended therapies and had him in special needs preschool.

As my friend’s son aged she attributed his development to many of the treatments she had tried on him. My son was progressing too but not at the same rate. Looking back, our kiddos were on very different ends of the spectrum and a comparison of progress was ridiculous.

But I decided to finally listen to her on probiotics. She gave me the number of the guy she used to get the extra strength probiotics that were helping her son.

I called the number and a guy with an accent answered. He explained that he makes all of his probiotics himself and they are 10,000 times stronger than what you can get in the store and doctors and scientists will all be coming to him in time.

I abruptly hung up on him. What was I doing? What harm could it do? Some dude putting a bunch of shit in a bottle in his basement and I’m going to force it down my kid? Yeah, that could do some harm.

No. No. No. It was a pivotal moment for me. For how I viewed autism. For how I viewed my son. It was a moment in which I acknowledged my own desperation and realized that my attitude had to change.

I was told by my “friend” that I was failing my child by not trying everything in my power to recover him. I was told her son was progressing and mine was not because of the choices I was making. I was promptly unfriended when I asked for peer reviewed research for a few of the claims she was making about cause.

And I stopped looking for ways to recover him or heal him or fix him. My goal was never for him to be normal. But I hated seeing him struggle. And I think for many parents of young children on the spectrum the desperation and exhaustion pale in comparison to the pain of watching your baby go through something you cannot fix.

We started seeing changes in our son when we started listening to him and reading him. Even before he had words he would tell us with his behaviors when things were too much. When we really observed him and learned his triggers, his aversions and his reinforcers, we no longer had a child who was miserable all the time. We have some hard days, but we also have some awesome days.

Looking back at pictures and videos of that time I am transported back to a time of desperation. And to the young families currently living it, I cannot promise you it will get better. Everybody’s journey is so different. But I can tell you it will never get better if you are listening to mom groups on the internet more than you are listening to your own child.

Originally Posted on FromMotherhood.com www.frommotherhood.com/2019/08/i-want-to-tell-you-story.html

1 person is talking about this
Community Voices

LET’S TALK: What does “me time” look like for you?

<p>LET’S TALK: What does “me time” look like for you?</p>
16 people are talking about this
Community Voices

LET’S TALK: What does “me time” look like for you?

<p>LET’S TALK: What does “me time” look like for you?</p>
16 people are talking about this