Mandy Farmer

@mandy-farmer | contributor
Mandy is a stay-at-home mom to three beautiful children, 7 and under. She’s a an advocate, author and blogger. Her husband’s career in the military has taken her family all over the country many times over. Her middle son is on the spectrum and they are embracing the journey. You can read more from Mandy on From Motherhood.
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

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Mandy Farmer

Sex Education for People With Developmental Disabilities

As children with autism and other disabilities get older, they are often developmentally behind their peers. This delay in development can make it difficult for caretakers and teachers to know when (if ever) it is appropriate to talk about sexuality with kids and teens on the spectrum. Unfortunately, the common path has been for parents to ignore the subject and assume their child or teen does not have awareness or the need to discuss their bodies and sexuality. While this may be common practice, professionals point out that avoiding the sex talk can leave autistic and intellectually disabled individuals even more vulnerable to potential abuse. Stephanie Mitelman, M.A., Certified Sexuality Educator argues that sex education for the developmentally and intellectually disabled community may be even more critical than sex education for the general population. “This group, like anyone, needs sex education, but even more so because this population is more vulnerable,” Mitelman explains. “This vulnerability stems from a couple different issues. For one, it is harder for this population to read people. They may not sense deceit or a dangerous situation in the same way you or I would. Secondly, those who may have communication obstacles or those who are completely nonverbal can be targeted due to their inability to report or say no.” The saying “no” aspect of sex education is one professionals focus on as critical to holistic sex ed. According to Mitelman, “Consent is the basis for all decision-making and the backbone of healthy relationships and friendships. Consent is how we show one another respect.” All individuals need to be able to say no to what they don’t want, but also yes to what they do. As a society, we often think of sex education as a bunch of teens in a room learning how to put condoms on bananas. But as the field progresses, educators have become more aware of the need to go beyond teaching about reproduction and contraception. Mitelman, who works with families and individuals with disabilities, also founded a company that produces sex education materials for classrooms, clinics and parents. “In my line of work I saw a gaping void when it came to products available for this community. We must be aware of the language and visuals we use when teaching sex education to be sure we are including all body types, abilities, genders and orientations.” Mitelman strives to fill this void with resources and educational supplements. Her resources include visuals for those who may not be able to read along with sequencing cards and social stories. While there are accessible and developmentally appropriate lessons on reproduction and contraception, there are also resources that cover consent, reading social cues, reporting, appropriate versus inappropriate touch, hygiene and healthy relationships. For all individuals, including those with autism and developmental differences, knowledge is power when it comes to bodies and sexuality. Even if it may be uncomfortable, as parents, educators and leaders in the disability community we must start having these discussions and help our loved ones to be safer, happier and more autonomous.

Mandy Farmer

I Was the Parent Who Would Never Medicate My Child, Until I Did

Before I was a special needs mom, there was a lot more black and white. I was guilty of a lot of opinions, some judgment and more ignorance than I would like to admit.  Before I was a special needs mom, there were a lot of “I would never” proclamations. And one such proclamation was “I would never medicate my child.” Of course, when I would talk about this, I wasn’t thinking about abstaining from medication needed to treat a disease or illness. I was talking about the other medicating. The medicating that still has a stigma attached to it. The stigma that perpetuates the idea that parents who medicate their kids are lazy or don’t know how to discipline their children. The stigma that has kept me from writing about this decision until now. Part of me blames that stigma for my bias. Another part of me recognizes that my preconceived notions were based in my own lack of understanding of mental illness. Even after witnessing our son’s inability to sleep, hyperactivity, compulsiveness, anxiety, mania and aggression, we were hesitant and scared to talk to the doctor about medication. Were we closing doors for him? Were we giving up on therapy? Was there any other way? Would meds change who he was? Could they hurt him? Were we taking the easy way out? Was it healthy to continue on without medicating? With him only sleeping three hours in a 24-hour period most days, and with his anxiety so high it was affecting his ability to function, we knew we didn’t really have a choice. As his aggressive behaviors spiraled and therapy was so limited, we knew it was the only way to keep everyone safe. And so we chose to medicate. There is no magic pill. Even after choosing to medicate, he still works so hard to overcome the challenges autism and its accompanying conditions present him. He still has trouble with anxiety and compulsiveness. He still has and progresses in hours of therapy every week. Even after accessing quality therapy, there were still issues therapy could not address. We didn’t give up on therapy. We didn’t give up on him. Medication did not change him; it helped him. I do not regret the choice and hope he won’t either. And looking back at his pained gaze in moments that his anxiety and senses were assaulting him; looking back at manic episodes that had his blood pressure through the roof; looking back at his absent stare due to another 28 hours of continuous wakefulness; my only regret is not helping him sooner. He still is an active little boy. But now he can play with his little sister and I don’t fear for their safety when they play. He still jumps and flaps and has an unmatched excitement for life. But now he can go to a new place without shutting down or melting down from fear of the unknown. We, as parents, would never let a deadly illness or ravaging disease go untreated in our children’s little bodies. Why should mental illness be any different? We owe it to them to not brush childhood and adolescent mental illness under the rug. We owe it to them to be honest that it is real and it can be scary and overwhelming. What does it say to them when we choose to hide certain diagnoses and certain conditions? Doesn’t it tell them we buy into the stigma, too? We owe it to them to show the world mental illness cannot be taboo, we are not ashamed and they shouldn’t be either. Our society’s inability to talk about mental illness openly is the reason we lack resources. When we choose not to talk about childhood mental illness, we a pull a wool over society’s eyes while families across our country go through hell and search for answers. I was a parent who would never talk or write about our son’s mental health issues, but now I am because it needs to be said, and it needs to be heard. Follow this journey on From The Bowels Of Motherhood.

Mandy Farmer

Why I'll Never Say Our Version of Hard Is Worse Than Yours

One thing that shocked me the most upon becoming a part of the autism community was the great divide and the tension that exists. You don’t have to go any further than the comments section on an autism blog to find the division and anger. I see the derisiveness in our support groups, in our special education classes and in our Internet discussions. I see support groups separating into functioning levels, as parents with kids on opposite sides of the spectrum aren’t always able to relate to one another. Amongst parents with children on one end of the spectrum, there can be a constant one-upping. This constant bickering over whose worst days are worse; over which child has the most challenges. Are people really arguing about this or feeling slighted if their child isn’t “severe enough” to be considered on this end of the spectrum? Well, in fact, we are. Maybe I should give you some context. How many times have you heard or read: “At least your child talks.” “Oh, he’s mainstreamed some of the day? So he’s just quirky, right?” “If you don’t deal with aggression on a daily basis, you don’t know the autism I know.” Sound more familiar now? There is nothing wrong with acknowledging that autism is a broad spectrum, and it affects everyone differently. But when we start belittling others’ struggles and day to day challenges, we start hurting our entire community. I was reading comments on one of my published pieces the other day. One reader said something like, “The person who wrote this clearly has a high-functioning child. They don’t deal with self-harming or aggression or destruction.” Except we do deal with self-harming and aggression. Every day. We do have our house torn apart and things broken mid-meltdown. The first thing I thought: How dare this person presume to know what we go through day-to-day based on one article, based on one day, one snapshot of our lives. My second thought: Damn, I think I have said something like that before. I remember a couple years ago arguing with a self-advocate and saying something to the effect of, “Well, if you are sitting there typing your thoughts, you have no idea what severe autism is like. Your opinions don’t apply to me and what my kid goes through.” How dare I presume to know what someone else’s autism is like. That autistic adult could easily be my son in 20 years, possibly able to type his thoughts, but also having gone through years of therapy to get to that point. They could easily be someone who can type their thoughts but still can’t speak or someone who still struggles with so much anxiety they cannot leave their house. I’m sure at some point we have all been on our side of this divide, and we cringe when the other side tells us we don’t have a right to feel the way we feel. When people unfollow my page because they see a video of my son talking and they assumed he was nonverbal like their child, it hurts. Especially as I go through his re-evaluation results this week and see that my beautiful 5-year-old got “poor” or “very poor” marks in almost every category. Don’t presume to know another family’s struggle. When my friend tells me her son has attempted suicide again because he is so very aware of his differences and isolation, my heart breaks. And it breaks even more knowing that before I knew her, I judged that side of our divide. I thought “Are they really complaining their gifted child isn’t challenged enough in school and is having behavior issues? I would love to have that problem.” My child may never live on his own, but maybe he will find his version of happy, and that will be enough. Your son may never say the words, “I love you,” but maybe his smile and his hugs are enough. My son may never stop having explosive moments, but maybe he will learn to get through them without hurting himself or his family. Your daughter may never have a lot of friends, but maybe she will find great satisfaction in what she does for a living. There are going to be hard days, and although our hard may look different than yours, I will never discount your feelings or experiences because they are different than my own. We’re all in this together, and I believe if we spent a little more time building each other up rather than ripping the other down, our community could move mountains. Mandy’s sons. Follow this journey on From the Bowels of Motherhood. The Mighty is asking the following: Write a love letter to another person with your disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Mandy Farmer

When I Went From Devastated to Ecstatic About My Son Riding the ‘Short Bus'

I will be the first to admit there was a time in my life when the thought of my child riding the “short bus” felt like a devastating blow. It wasn’t so much the stigma attached to it as it was the far-reaching implications of such a need and the realization that things would be so different for our family. When we realized we were going down a special education path, I envied my friends who would worry about things like PTA meetings and bake sales. Following our son’s autism diagnosis and prognosis, I worried endlessly about his future. I worried every day about how tomorrow would unfold. The weight of so many unknowns was palpable. As our son’s aggression, anxiety and sensory issues worsened and interfered hourly with his quality of life, my worries early on about giving up “normal” seemed petty and ignorant. As I watched him so often crippled by his fear and pained by his senses, the only thing that mattered was helping him through every anxious moment and holding on to the happy moments that were so far and few between. During the harder days when he was without services, without mental health care and without proper education, I didn’t have enough energy to think about tomorrow or 10 years from now. I was spent just trying to keep everyone in our house safe from one minute to the next, including our son who would self-injure as well as aggress towards his siblings and me. With his anxiety taking over, the hope of him attending a regular school in a special ed classroom started slipping away. I was no longer obsessed with him mainstreaming or “fixing” his delays; that was the least of our problems. When he shook, screamed and got sick when we all tried to go on a bus for a special outing, I knew he probably would never ride the bus even if he could attend public school. During the weeks he couldn’t even leave the house without incident or if sensory overload affected him for days, I would have fully embraced my son going willingly on a bus (whatever size) to a school that could accommodate him. So today when he rode the “short bus” for the first time on a class field trip, I had tears in my eyes and hope in my heart. He looked back at me about a 100 times to make sure I was sitting in the seat behind him, but he smiled and got a thrill when the bus accelerated. Guiding him onto the bus and asking him to sit next to him was a little boy who has taken to him since the start of the year. As the teacher explained all that was to come, my son started rocking and his friend grabbed his hand. I watched them walk together in the hallway and heard this sweet boy tell him the bus wouldn’t be so scary. As we pulled away from the school, he told my son he could cover his ears when we got to our destination if it was too loud. I couldn’t ask for a better friend for him. A friend who is so accepting and aware of the issues my son faces. A friend who has Treacher-Collins syndrome and partial deafness and has overcome so much already in his own young life. The other children talked to my son, too. The boy who sat across the aisle from them called for my boy by name to look out his window at the Christmas lights we were passing. There was a time when I was so leery of special ed classes and the “short bus,” but now I see a safe space where my son is not judged. He is not only accepted; he is liked. He has friends. One of his other friends could not go today due to a seizure and hospital stay. So, yes, you come to a point where you are not only OK with your child riding the “short bus,” you are ecstatic that he can and did. Right now seeing him happy and healthy and growing and learning is everything I could ask for, and anything else is just noise. We have hard days. But today was a good day. Today he rode the “short bus,” and it was perfect. Follow this journey on From the Bowels of Motherhood. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Mandy Farmer

When Therapy Is Working for My Son With Autism

I often share our son’s successes, the seemingly minor milestones to some that mean so much more to those in the autism community. Sometimes it’s a new food he has started eating. Sometimes it’s a trip to the store without a meltdown. Sometimes it’s saying a full sentence and shocking us all. Always it’s the direct result of therapy that’s working. Some of these therapies have recently come under fire for trying to change the core of who our children are. Some are questioned for their effectiveness and quality. Unfortunately, we have experienced therapy that doesn’t work with a few therapists who just didn’t get it. Thankfully, we have also worked with a lot more therapists who measure their own success by the difference they make in our son’s life. And that difference has been remarkable. When therapy is working, sessions are filled with laughter and smiles. When therapy is working, he is learning and growing but thinks he is playing. When therapy is working, obstacles are overcome and anxiety is lessened. When therapy is working, there are calming hugs and deep breaths when things get a little harder. When therapy is working, there may be tears of frustration when he can’t quite get it. But there are definitely tears of joy when he finally does. When therapy is working, he is learning to regulate his senses and in turn is beginning to make sense of the world around him. When therapy is working, the therapist listens to him and watches him to gauge how things are going. When therapy is working, the therapist listens to us, his parents, to know in which direction we should be heading. And we listen to them to learn the best way to get there. When therapy is working, his siblings no longer fear they will be hurt by him. They hug him. They laugh with him. Because therapy is working, he is learning to know how he is feeling and how to cope. He is learning how to tell us those feelings, too. When therapy is working, we are not focused on changing who our child is. We are focused on giving him everything he needs to be the best version of himself. When therapy is working, they are peeling away the obstacles that try to impede him every day so we can see him. When therapy is working, he is respected and loved, and the results are beautiful. Follow this journey on From the Bowels of Motherhood.

Mandy Farmer

Halloween Is Hard for My Son With Autism, but We Still Celebrate It

Our son loves the idea of Halloween. He loves the decorations and all the gross Halloween bugs on the store shelves. He likes the idea of trick-or-treating and the idea of dressing up. But it’s hard for him. Due to his autism and sensory issues, we realized early on that costumes made him unhappy and uncomfortable. From a lion to the Hulk, nothing ever seemed to work for him. I started choosing costumes that only needed a hat and lightweight outfits that felt just like clothes. And overall, that has gone well. Except now he wants to choose his costumes, and crocodiles and dinosaurs are usually fuzzy, heavy and have cumbersome headpieces. So we try to make adjustments (like cutting off the chin straps and the feet). But I’m still not quite sure how it’s going to go this year. I’m assuming trick-or-treating will appear less than successful, too. In the past, he’s made it to one or two houses and then gets upset that we’re not going into the houses. It doesn’t make sense to him that we would walk up to a house and then walk away without going in. This year, we’re prepping with social stories and practice runs and hoping for the best. I know some will say, “Why do you celebrate Halloween at all if it’s too much for him?” And I get it. It may appear as though we’re trying to force a societal norm and we should just accept that Halloween will always be different for him. But he still wants to join in on the celebration. He still wants to wear a costume. He still wants to trick-or-treat with his siblings. Just because something is challenging for someone with autism doesn’t mean they don’t want to participate. It may just take a little more planning and consideration to make it happen. So we accept his boundaries and try our best to accommodate. And until he no longer wants to try these things, we’ll keep doing them even if it looks like a complete fail to everyone else. Maybe this year he’ll walk up to three or four houses before he starts getting upset and needs to go home. That’s one more house than last year, and we’ll be proud that he gave it another try. We’ve learned to be grateful for the small steps forward because we know those small steps take colossal effort. Follow this journey on From the Bowels of Motherhood and on Facebook.

Mandy Farmer

What I Wish I Told the Mom Who Stood Near Me at Our Sons' T-Ball Practice

A few weeks ago, I was able to go solo to my oldest son’s second T-ball practice. I was elated. He was happy, excited and so ready to play. He talked freely and openly to all of the other kids on his team. I could tell he was already making friends, and I wasn’t a bit surprised. I spoke with the other moms and we talked about kindergarten, elementary schools and neighborhoods. We all laughed as we watched our kids run to the wrong bases and the coach quickly averting crises by redirecting wayward swings. I was so caught up that I almost missed the little boy who should’ve been playing but was hiding behind his mother’s leg, crying. Even though they were standing right next to all of us other parents, there was a wall between us. His mother was not enjoying the moment; she flashed us a forced smile, but she was stressed and embarrassed. My husband had told me that at the first practice, there was a quiet little boy who seemed terrified to play or talk to the other kids. My oldest had talked to him and tried to convince him to come out on the field with the others, but he was immovable. Sometimes hiding behind his mother. Sometimes dropping to the ground and crying in protest. We had talked to our oldest about it and explained that he should keep being nice and keep trying to include that little boy. Maybe he was new to sports, maybe he had never been around other kids or maybe there was something else going on. The coach had made an attempt at the first practice to encourage him to come out onto the field; no such attempt was made at the second practice. One of the other mothers asked him why he wasn’t playing on the playground with the other siblings. He averted his eyes and his mother explained he was actually on the team. As construction noise buzzed from behind the field, her son covered his ears, plopped on the ground and drew his knees to his chest. It looked familiar. The anxious look on her face was all too familiar, too. That worry in her eyes that at any moment her little boy was going to lose it and mortify her. I tried to separate from the moms chattering about PTA and picnics. I reassured her that our oldest was scared his first time playing a sport and that I was sure her son just needed time to get used to the idea. She was grateful for the conversation, but she wasn’t convinced. That wasn’t what I wanted to say to her, though. I wanted to reach over and give her a hug to calm her frazzled nerves. I wanted to tell her that although I was at the practice beaming over my social butterfly, I had another little boy at home with his daddy who couldn’t have handled the noise. I wanted to tell her about the time we tried gymnastics, and our youngest son completely lost it in the middle of the gym. How I had to stay right with him for every transition while the other preschoolers walked in line from one room to the next without issue. We didn’t return to gymnastics. I wanted to tell her how alone I felt at the work picnic when my youngest son wouldn’t play on the playground with the other kids. And how embarrassed I was as I chased after him, and how he would fall to the ground and scream every time I tried to turn him around. I wanted to tell her it gets better, and that even if T-ball is not in the cards for her son, they will find other things he enjoys beyond measure. I wanted to tell her even if her son couldn’t handle such a big group, that with lots of planning and preparing, successful smaller group activities could be in their future. The fear that I was overstepping kept me from saying all of that, but maybe I should have. The fear that my observations would offend kept me from being open. I reached out and my son reached out to hers again and asked if he wanted to stand next to him and wait to bat. He resisted again, but I could tell it meant the world to his mom that we were trying. She insisted they would keep coming, even if he sat on the sidelines and just watched the other kids. They never came back. Nobody asked where they were or what happened. And even though we knew and we tried harder than most, it wasn’t enough, and we could have done more. When did we become a society in which reaching out to someone struggling is out of the norm? How do we preach inclusion to our kids and yet rarely practice it ourselves? I fear we are all so preoccupied keeping up the facade of normalcy that we are unable to see the beauty of difference. Follow this journey on From the Bowels of Motherhood and on Facebook. Lead photo source: Thinkstock Images

Mandy Farmer

What to Do During Autism Sensory Overload

I see your stares and sometimes dirty looks. I hear the comments and the whispers when my son covers his ears and screams as the intercom comes on in the grocery store. Or when he falls to the ground and whines when we walk outside on a sunny day. I’m sure you’ll write it off as bad behavior, bad parenting or both. I recount the times we attempted haircuts in public salons, and you were there sneering at his screams and tears. I hear you, the perfect mom, disapproving of his lunch and its lack of healthy choices. I’m sure you see a lazy parent who just gives in to her kid’s demands. And you, friend, when I apologize for our absence from a party, I know you don’t understand and we seem antisocial. And on the few occasions we go to a social event and there’s a baby crying in the room, as my son screams out and begins crying himself, I see the annoyance in your eyes. And you’re annoyed because you see a kid that simply wants attention. If only it were that simple. You don’t see the hours upon hours of therapy he’s experienced so he can tolerate going into a grocery store. He may have to cover his ears, he may have his moments, but he is working hard in that moment to hold it all together. And how I wish you’d realize an understanding smile in that moment would make all the difference. You don’t see the panic and anxiety in his eyes when we talk about a haircut. You don’t see the many therapy sessions that involved simply tolerating being in the room with a set of clippers going.  You don’t hear the pain in his cries when the hair or water touches him.  You don’t know that we prepare for weeks leading up to a haircut. And now with an understanding stylist, who is willing to take lots of breaks and help talk him through it and avoids clippers altogether, haircuts are still hard, but they’re so much better than they once were. While you may see an unhealthy lunch, you don’t see the months of therapy it took for him to accept eating that apple. Yes, it’s the only fruit or vegetable he will eat, but we’re moving forward. You haven’t seen him gag, cry or flip a table when presented with a new food. It’s not a matter of appeasing a picky eater; it’s a battle with his senses, it’s anxiety about the unknown and it’s hard for him. When family, friends and teachers accept that our food choices are a work in progress, when they take the pressure off because they realize how hard we’re working to eat healthier, this mama breathes a sigh of relief. When a loud, chaotic social event is over, you don’t see the meltdown. You don’t see him rocking and crying and singing for hours as he tries to bring himself down from the sensory overload he’s experienced. So forgive me, there are times when we just avoid the party all together. But that doesn’t mean we don’t wish we could be there or that he doesn’t enjoy playing with friends. So please keep trying, and if it’s a smaller gathering and I think he can handle it, we will try. But understand and don’t be offended if there are times when we can’t. Imagine hearing too much, seeing too much and feeling too much every time you walked into a room. That is life with sensory processing disorder, and there are times when it’s just too much. You can always choose to see what you want to see. These are hard conversations to have because they set him apart, but now you know. And now that you know, perhaps you can see things differently. Mandy’s son smiling in front of a tree Follow this journey on From the Bowels of Motherhood. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Mandy Farmer

What to Say to Parents With an Autism Diagnosis

We’ve been through the diagnosis. We’ve been through the IEPs and evaluations. We’ve navigated education systems in three different states. I’m starting to feel like a veteran autism mom and blogger. As seasoned and experienced as I’m feeling, I was caught off guard when two friends recently started going through the diagnosis process with their own children and I didn’t know what to say. I think I found myself tongue-tied because all I could think about were the things not to say — the well intended comments made to me when we started this journey that were meant to comfort but cut like a knife. During my discussion with these moms, those comments came rushing back into my head. Some almost came out because I just didn’t have the right words in that moment. Wow, this is what it feels like to be on the other end of this conversation. But even without the right words early on, I couldn’t bring myself to say the wrong ones. I wouldn’t say, “I’m sorry.” I heard a lot of these. They were always empathetic and heartfelt. But they made me feel worse, not better. I didn’t want people to be sorry for me. While this life might be different, it’s not less. While my child might miss out on some things, he’s not less. His life and his diagnosis are not things I feel sorry for; you shouldn’t either. I couldn’t say, “He’ll be fine.” I don’t know if your child will be fine. I don’t know that Early Intervention will move mountains. I don’t know what the next 20 years looks like for you and your family. And when people told me, “You caught it early; he will be fine…” it hurt. If he doesn’t overcome challenges, if he doesn’t mainstream, if maturity doesn’t lessen his challenges… does that mean I failed? Please don’t compare our journey to that of a friend of a friend whose child has autism spectrum disorder, had therapy and is now “fine.” ASD is complex, and no two journeys are the same. Even as a mother of a child with autism, I’m hesitant to give advice, as I know my son’s autism is not your child’s autism. I knew better than to say, “Really? He seems so normal.” I was surprised by how much I heard this one. It seemed like a backhanded compliment. But it not only minimized what we were going through daily, it inferred that if he did indeed have autism, he was abnormal, broken. I would never say, “Oh, I hope not.” I only got a few of these doom-and-gloom responses. They lacked empathy and pretty much damned us to a life of a misery in one simple phrase. It’s not a comfort, and it’s not helpful to try to wish away a family member’s diagnosis. It’s hurtful. You see, all of those phrases are overthinking and overanalyzing someone else’s situation. They don’t comfort; they simply insert my opinion when my opinion wasn’t asked. Parents facing an ASD diagnosis don’t want unsolicited advice or pity. They don’t want you to minimize their feelings or give false hope. They want you to listen. They want you to care. They want you to stay in their lives and perhaps not brand them as “special needs parents.” They want you to understand that although their lives might be taking a different turn, they still need friends. Their children still need friends. Then it came to me. The two simple and perfect words you can say: “I’m here.” And mean it. Mean it through every struggle, every victory and every passing year. Mean it on the days when autism is all they can talk about and on the days when they need an extra set of hands. Mean it when you’re making out the list of which children to invite to your child’s birthday party. They don’t need you to be an expert on autism. They don’t need you to always say the right thing. Now, more than ever, they need you to just be there. Follow this journey on From the Bowels of Motherhood.