Neurodivergent Space

Moderator: Welcome to the nd-space AMA series! Today, we’re excited to have Seasonedmomreviews with us. She has contributed extensively to nd-space.com, covering a wide range of topics such as sensory tools, relationships, food, and therapies for autistic children. Thank you for joining us, Seasonedmomreviews! Could you start by sharing a little bit about yourself?

Seasonedmomreviews: Hello! I am a stay at home mom to two girls ages 13 and 9 who are autistic. My husband is also autistic, all falling into the ASD category. I am using my teaching degree for substitute teaching currently. I have worked with a range of severity on the spectrum, from non-verbal to high functioning.. I love to knit, crochet, and spend time with my family. For privacy and ease of identification, I will refer to our oldest as S and our youngest as N.

The Q&As are formatted as bullet lists below. 

• Thank you for sharing your background! Your insights will be incredibly valuable to the readers of our blog. Also, I’m curious—have you considered selling any of your knitted or crocheted products?
  • I have done commission pieces, and I am currently trying to sell washcloths, dish scrub pads, hats, amigurumi rocks, rice buddies for heat or cold, knit gnomes, and fingerless mitts. I am going to try selling at my first craft fair in November. 
• How did you first learn about your child’s autism diagnosis?
  • For S, I suspected from age 1. She was always particular about textures and sensations. At the time, I knew about sensory processing disorder due to my nephew having it, so I just incorporated it into our daily routine. Things like transitions, meals and textures of foods, clothing are examples of things I paid more attention to and tried different options.
  • For N, I didn’t suspect it until we managed to get her PANS (pediatric acute onset neuropsychiatric syndrome) under control. That was maybe around age 7.5 or 8 years of age. We knew she was different, but she was under-responsive to things like textures, transitions, or sensory input. It wasn’t until we started seeing a new psychiatrist who mentioned it that I connected the dots and realized this was also autism.   
• What were some of the early signs that led you to seek a diagnosis?
  • For S, textures of foods, clothing with tags would cause irritability, change in routine or sudden transitions would cause her to become upset. Looking back, she started speaking full sentences at age one. Walking at age nine months. She would line her toys up by color. She would sort wooden beads by shape. She was also easily upset by shows where the main character would get into trouble, like Curious George. 
  • For N, She was delayed developmentally. She didn’t start walking until age 15 months. Talking was always her own little chatter, but her voice was always a high pitch sing-song voice. Around age 2, she became obsessed with sensory bins and water. She would put her entire body in if she could. She loved and ate any food you gave her, didn’t have any issues with tags or clothing, and really wasn’t bothered by change in routine or transitions. 
  • Around age 5, we all became sick with influenza b. That was the trigger to her PANS and it’s been a long ride since. She has since been diagnosed with autism, adhd, anxiety, pans, ocd, arfid and suspected schizophrenia. She is currently age nine and is doing really well on the medications and modifications through school.  
• How did you feel when you first received the diagnosis, and how have your feelings evolved?
  • I wasn’t surprised or shocked at all. It honestly didn’t change our lives because I had already made the adaptations or modifications to help them develop as normally as they could. I was a little depressed about my husband’s official diagnosis, even though it wasn’t a surprise either, because it cemented the fact that he will never interact with me or society the way a neurotypical person would. Having that equal parenting partner isn’t something that I will ever have and that was difficult to come to that realization. It doesn’t mean he isn’t a good parent or partner, it just means it looks a lot differently than others. 
• What were the biggest challenges you faced in the early years?
  • With all of them I struggle to this day with their occasional meltdowns over how I cooked food or sudden changes in routine. Having to explain things step by step or “hold their hands” in order to get anything done around the house, like cleaning. For S, her biggest challenges were learning to be flexible with school schedules and not taking every rule so literal. For N, she was part of the 2020 Covid lock down for kindergarten, so her introduction to school wasn’t the best. She has since struggled with not being able to do school from home, on an ipad with zoom meetings, which is what her kindergarten year looked like. 
  • For current struggles, S struggles with being flexible with schedule and with social relationships. She doesn’t understand why kids would want to bully others and is often the target of bullying. N’s autism struggles are also social related as well as taking things too literal. We also work on communicating what we mean and need instead of being irritable or upset and not communicating our emotions.
• How do you explain autism to others, especially family and friends?
  • I honestly don’t have to, because most of them are also on the spectrum somewhere. We do have some struggles with grandparents not understanding that our girls don’t understand sarcasm or teasing, but it’s just who the girls are, it doesn’t make them any different than the rest of their cousins. 
• What’s your biggest success story as a parent of autistic children?
  • This has come back to haunt me, but S was so good at masking by the time she went to school that school wouldn’t agree to an IEP or 504. Eventually I did get them to agree to a 504 but it’s just to allow her an alternative to chew on that isn’t her hand or pencil. It also allows her to leave her classroom whenever she feels overwhelmed to go take a break. I have worked hard teaching the girls how to mask to fit into society’s expectations and for the most part, they both are able to appear neurotypical. 
• What was the most helpful thing in teaching them to ask to fit society’s expectations?
  • I think that the most helpful thing to do to aid masking is to provide them with places where they can practice these skills. For example, going out to eat you can choose a louder restaurant so that being quiet isn’t required. Looking for clues that the child is becoming overwhelmed and ending the outing at those first signs. Giving reminders to take calming breaths, providing sensory items for fidgeting, taking breaks out of the setting like stepping outside while eating at a restaurant. And lastly, modeling the expectations of society and setting expectations of your own. One expectation for us is that we expect our children to pick their food and tell us or the waiter what they’d like. 
• How do you manage sibling relationships in your family?
  • I frequently play referee among the two. There is also a decent age gap that causes some strife. We have tried to implement family time, however it never ends up being a good time for anyone. We do a lot of fun stuff one on one with the girls, or I try to make sure each girl gets uninterrupted time with me, doing something they enjoy. 
• Can you share a time when your child surprised you with their abilities?
  • S and N have both grown in the past year in so many ways. For S, she has mastered playing the french horn and at her solo competition, she just surprised me with how well she can play. N has also grown so much in dance class. She had a very rough year with dance, refusing to participate in class, but when it came time for the recital, she did such a great job! I am so proud of both girls!
• What therapies or interventions have worked best for your child?
  • S benefited greatly from food therapy. It truly gave her the tools to explore foods in her way and opened up many possibilities for foods. Currently, cognitive behavior therapy is the best for her because it helps her talk through those friendship struggles or helps her learn coping strategies for when she is being bullied. 
  • N has benefited from speech therapy, although she still has a speech delay that is significant compared to her peers. She really has not benefited from the other therapies, even though we’ve tried on and off. She is currently under speech therapy, occupational therapy and cognitive behavior therapy. 
• How do you balance therapy with school and everyday life?
  • S hasn’t had to miss much school for her therapies, because she had most of them before she was in kindergarten. She currently misses once a month for cognitive behavior therapy. 
  • N is also missing once a month for cognitive behavior therapy. She receives speech therapy in school and her occupational therapy has just been initiated so we’re waiting on the initial evaluation. She has completed occupational therapy before, but wasn’t benefiting from it at that time, so we chose to end the therapy. Hopefully she is more mature and ready to work this time!
  • Overall, I try to schedule the appointments right away in the morning, as late as possible in the evening or around their lunch break so that it minimizes the amount of classwork missed. N also has completed classwork at home to catch up, but so far hasn’t needed to do that this year due to her participation during the day. I also utilize early out days which happen every other Wednesday. 
• What’s your experience with public vs. private schools?
  • We have only used public schools as private schools in Iowa are mostly religious based, and we are not. I have worked extensively with early intervention with N, through our local area education agency. They’re currently providing speech services. It took her many years to be far enough behind that they would offer services, at which point it felt like it was too late. 
  • Overall, I have been “that mom” that the administration learns to dislike. I am a fierce advocate for them and I can be pretty pushy. Unfortunately, thanks to the government, a lot of public services keep getting defunded. So I am grateful that my girls are older and aren’t just starting out on their education journey, as the funding isn’t there. They would be denied services due to that. Also, there has been a new truancy law passed in Iowa that has made receiving therapies difficult. If your child misses more than 5 days, regardless of an excuse note, you’re facing truancy. It’s ridiculous! 
  • It has also been hit or miss with how amazing the teachers are. There are great ones and not so great ones, we’ve been fortunate to have fairly amazing ones for S and probably every other teacher for N has been amazing. We are currently with an amazing teacher for N and it truly makes the world of difference in her behavior.
• How do you advocate for your child in educational settings?
  • Most of the time, I will bring up a struggle N is having and what I see has helped at home or what I think might help at school. If we have a great teacher, most of the time they’re willing to try it at school. I have had to push initially to get an IEP for N and a 504 for S, but once it was implemented, any suggestions I give have been considered by the teacher. Oftentimes the teacher will communicate what they’re seeing at school and if they have any suggestions to try. 
  • Should the teacher disregard any suggestions or concerns that we have, I always request a new IEP meeting to address it. By law, the school is required to hold a meeting if it is requested by the parent. But I try my best to work with the teachers and be as courteous and patient as I can be.
• How do you communicate your child’s needs to teachers?
  • The school district uses an app that provides communication via a text messaging system. I will often communicate via this app, however some teachers prefer email. I try to give the teacher a heads up if the morning wasn’t a good morning, or if there are any behaviors I witness that morning so that they are prepared for her arrival. It really depends on the teacher, some are receptive and communicate promptly and others do not reply at all. Often, if the teacher does not reply at all, that is when I’ll advocate for an IEP meeting to make sure we’re all on the same page and providing the best environment for N to succeed. 
  • For S, I have started stepping back from communication with teachers unless they reach out to me or if S is stuck on a specific event that happened in a class. She is now in eighth grade and those advocacy skills need to start from her and not me. Just slowly easing her into the adult world and being able to recognize problem areas and how to advocate and improve the situation to the best of her ability. Only once have I needed to step in this year, and that was when one of the teachers reached out to me about S’s confusion on assignment due dates. It ended up being a miscommunication and once S and the teacher figured it out things have improved. 
• What’s one thing you wish more teachers knew about autism?
  • I wish everyone, not just teachers, would recognize that no two persons with autism are the same. All three of mine are completely different, even though they all have ASD as their diagnosis. I also wish that teachers had more support through their district for their classrooms. Not just for autistic kiddos, but Iowa has really made teaching very difficult. 
• Do you feel schools are doing enough to support autistic children?
  • Our district has had its ups and downs with supporting my kids with autism, however it really falls back to their funding and support. Which in Iowa has almost been completely stripped away by the government. 
• How do you support your child’s learning outside of school?
  • Learning while at home is focused on the daily tasks and routines and how to be successfully independent. I have used a number of different strategies and sometimes they work, sometimes they don’t. For example, using a chart that lists out all the things that need done for getting dressed. Once they put on that garment, they move the picture to the done side of the chart. 
  • I also make sure I model what is expected. We’ll complete tasks together, and slowly I back off of doing the task and ask the child what to do next. Asking questions like “What’s next?” or “Now what do you need to do?”  
• What accommodations have helped your child thrive in school?
  • For S, she simply needed gum to chew on to reduce chewing on her fingers. She also utilizes a break time whenever she feels overwhelmed. 
  • For N, because her autism is more severe and because of all of the other issues she faces, we have had to do a lot of trial and error. What might work today won’t necessarily work tomorrow. Currently, she has gum and chew necklaces to prevent self harming by biting. She also goes to a separate, quieter classroom to work on independent work but she can also go to this classroom to take breaks when she feels overwhelmed. She’s academically falling behind, so we have purchased an iPad and have downloaded the apps that school uses. On some of the apps that she is behind, we can provide time at home for her to get caught back up. 
• How do you help your child navigate social situations?
  • I try to facilitate a play date, but then I try to make myself invisible and let the children interact. I have never had any aggressive behaviors from either girl with friends, so the main focus is providing a one on one play date. I struggle with sending her to other friend’s houses because what if she has a bathroom accident, what if she wanders off, what if she gets upset by a comment and I am not there to help her understand what was meant and not what was heard. We honestly haven’t done a lot of play dates because she has been struggling so much for so long. 
• What strategies have you used to encourage emotional regulation?
  • We use the app called Headspace. It provides calming music and nature sounds that S listens to at night. We have also utilized the shorter calming down meditations designed for children with N. We remind her to take big, slow breaths and how to find things to focus on in her environment to take the focus off of the overwhelmed feelings. 
  • If it becomes a meltdown (see how do you handle meltdowns), we highly suggest going to their room, doing some swinging while taking big, slow breaths. Once they feel calm, they’re welcome to come out and try again. Sometimes I will go with N to her room to guide her through calming down, but times where she is being physically aggressive it’s best to let her do her thing and then try to help once she has some of the aggression released. We also provide soft things for hitting, kicking or throwing like plushies and pillows. 
• How do you handle meltdowns, both at home and in public?
  • In public, if they’re walking and meltdown on the floor, I either sit with them or stand there and just wait it out. Eventually they’re done and we can continue on our day. When they were really little, I could physically carry them to the car where we would wait it out. We have rarely had public meltdowns since maybe age 3 from both of them. At home meltdowns still happen frequently. S struggles often now that she’s a teenager and hormones have kicked in. It’s more difficult to self regulate some days and the slightest thing can set her off. We do our best to ignore it, but often I will strongly suggest they go to their room and collect themselves before trying again. N hasn’t really had any meltdowns since we managed to get her pans under control. That was the worst time of our lives. For those meltdowns, we had to restrain her, lock her in a safe room, wait it out while she physically and verbally attacked us, and redirect as much as we could. There were a lot of nights where we had to rotate every 5 minutes which parent was helping with the meltdown. Now, she might not agree with what we say or want her to do, but she will usually cooperate begrudgingly. 
• It must require a lot of patience from parents in those cases. How do you manage your own emotions?
  • It requires a huge amount of patience, some days I am more patient than others. I cannot say I am always patient, I have lost my temper a few times, I am only human. But when we have streaks of aggression and resistance, we try to do a tag team effort. I will start helping N, then when I feel myself losing patience, I switch and K (my husband) will go in. Once he has reached his limit, I swap back in. Usually there’s a good five minute time period for me to reset, but it is very exhausting when we spend all of our time doing this method. 
  • Another method I use is providing her with the items she needs, laid out in order of how they go on, then leaving the room for a few minutes allowing her the opportunity to do things on her own. 99% of the time, she has not done the task… so I end up starting it for her. Like taking off her pajamas and placing her clean clothes over her head. This triggers her to put her arms in the sleeves. This can help teach her independence with dressing, but most of the time I end up having to do it for her because we don’t have enough time left before needing to leave the house. 
• How do you foster friendships for your child?
  • N has very few friends, two to be exact. I do try to set up an occasional playdate, but we’re not social people in general. When I set up a playdate, I prefer it to be at our house so I can listen in on the socialization to see how she’s doing, but rarely do I step in unless there’s a big miscommunication and an argument starts.
  • I encourage her to find her friends at recess, which she has gotten better at doing this. They always make up their own game together which is cute. 
• What’s been your experience with social stigma or judgment from others?
  • I struggle with this a lot. With S, we really didn’t have the public side of things because she is so good at masking. With N, she is much more obvious and has no hesitation to bluntly say things. Oftentimes this comes across as rude or disrespectful but she’s really just making observations. When this happens, the other child or parent might ask or say something about it and I’ll just respond with something like “Oh she is autistic, she’s just curious.” 
  • My biggest struggle with judgment comes from advocating with the school. I feel like they view me as a bad parent who isn’t disciplining at home and that’s why she has these behaviors. I feel like they think I am making things up or have munchausen syndrome. I have also felt like the school has collected data that supports their suspicions of neglect, which are false. But I place these judgements on myself too. I feel that my genetics and the environment I provided for them while little has affected their life for the worse. Maybe if I had done something different, or maybe it was how my pregnancy went that could have affected who they are today. 
• How does your child handle transitions, and what helps ease them?
  • Neither one handles them well at all, but giving them fair warning has been the biggest help. Reminders like “ten minutes before we go to dance” followed up by 5 minutes, and so on until it’s time to leave. We also leave plenty of extra time in case there is a meltdown, we have enough time to allow them to calm down before continuing. 
• What role do extracurricular activities play in your child’s development?
  • For S, she tried dance but didn’t have the coordination. She has really done well with band, choir, musicals and plays. She’s in eighth grade and has found her love for performing through those. She also tried soccer, but didn’t understand the back and forth with possession of the ball. She would get mad and frustrated when the ball would be taken from her by the other team. She’s currently taking Ninja Warrior classes where she is not as fit as the other students in her class necessarily, but she does actively participate. It’s a great social setting for her as well as a great physical work out. 
  • For N, we chose to keep her in dance because she truly loves to perform on stage. She has started to lag behind her peers in ability, so I am interested to see how long she continues with dance. She recently joined swim lessons because she missed out due to covid lockdown and absolutely loves the water. We will happily continue swimming until she tells us otherwise!
• What’s the most rewarding part of watching your child develop socially?
  • For S, I am enjoying watching her find her place at school. Finding her group of friends, and that is through band. My husband and I met in high school band, and my friend group was also in band. Not only does it provide a place to succeed musically, but it provides a world of like minded individuals, who might also be on the spectrum. So I encourage her to try out different activities like the musical, the play, jazz band, choir, and concert band. 
  • N has always struggled making friends. It usually ends up being a love-hate friendship where communication interferes. It makes me happy knowing that she does have two friends and she gets invited to birthday parties for them. Kids know she’s different, but I have witnessed her dance class mates try to include her. 
• What are your top tips for creating a structured daily routine?
  • Find what works best for you. If it means putting pajamas on before brushing teeth, go for it! Make it visual with a picture chart. Have everything they need to complete for the routine on one side and as they complete it move the picture to the completed side. For the first few weeks, do the routine with them until you feel like the child can complete the routine on their own, but slowly step back how much help you offer. Keep in mind that you might make some progress towards independence followed by backstepping progress. What was a mastered skill might become difficult for the child and you have to provide more assistance again. 
• How do you approach meal times with picky eaters or sensory issues?
  • I try to make meals that can accommodate different eating styles. For example, if I make a pasta dish, I will leave the ingredients separate and you build your own. This can allow the child to feel in control of how much food and where it goes. But the rule at our house is you must try one bite of everything offered at that meal. Occasionally, the entire meal is a miss so we will allow them to make their own meal after trying one bite of everything.
• What’s your bedtime routine like, and how do you manage sleep challenges?
  • Both girls have never had problems with bedtime routine or sleep. N developed a need for little sleep over the years, but knows to be quiet so the rest of us can sleep. 
  • We’d start by doing the usuals like pajamas, brushing teeth, going to the bathroom. After that we read a story, now that they’re older we no longer read. The last steps are to sing a goodnight song we learned from Daniel Tiger’s Neighborhood, snuggle and that’s it. It would usually take 30-45 minutes and they’d stay in bed or in their rooms all night. 
  • Since N’s diagnosis of pans, she has required less and less sleep. There were some nights where she would take her night medicines that were supposed to make her fall asleep but she would be wide awake at 3am, ready for the day. We do still have rare days where she will start her day at 3am, 5am, insanely early and then there are days where we cannot get her to wake up at all. On those days, we have to let her sleep until she wakes up on her own. You physically cannot wake her. Those days, it could be 10am, it could be 3pm before she wakes up. But lately, her sleep schedule is close to 9pm to 7am.
• How do you approach sensory sensitivities in daily life (e.g., clothing, noise)?
  • I always try to find things that I know won’t bother them, like clothes with no tags. It has become increasingly easy to find items in stores than it was when S was a toddler. If it can’t have the tag removed, or if it’s an itchy fabric I simply do not buy it. 
  • In public and in the classroom, it can get quite noisy at times and it’s out of your control how loud it gets. We have several pairs of over the ear noise reduction headphones in addition to Loop ear plugs for S and myself. 
  • We usually will reduce the amount of time spent in an environment that causes more sensory overload, which reduces the meltdowns while also exposing them to opportunities to learn how to self regulate. 
• What’s your experience with public places like grocery stores or restaurants?
  • We always chose a restaurant that the child could be as loud as they wanted to be. Places like sports bars that play multiple tvs are our go to. Our other preferred place is Perkin’s which has such a large menu that there’s at least one food each of them will eat. Places like this usually require a little control on how loud the child can be, but taking activities to pass the wait time helps. The restaurant also provides a coloring sheet with the menu items on it, which helps them decide what they want, circle it and practice telling the waiter what they’d like. 
  • Going to stores is something I have always chosen to do alone. That’s my “quiet” time where I only have to focus on getting groceries. If I do need to take them with me, we haven’t had any major meltdowns except maybe twice and that was when the check out line makes you walk through a long aisle of candy and toys to get to the cashier. I always lose that battle and end up agreeing to buy one small and cheap thing if they can make it to the check out without melting down. 
• How do you plan family vacations or outings?
  • We aren’t the vacationing type, but we have taken trips where we’ve gone to see family that lives further away. We used to stay with family when they were younger, but now that they’re older we have to stay in a hotel or airbnb. For August 2023, we did take an “airplane vacation” to Huntington Beach, CA. This was their first time flying as well as our first time staying in an all inclusive resort. We had a last minute week right before school started and things all fell into place, so we took it because we had originally planned on an “airplane vacation” but then covid happened. 
  • Routine doesn’t change regardless of where we’re sleeping. And as far as the change in where they sleep, it has never been a problem. Especially because we are usually in the same room or bed. 
  • For family outings that are near home, we try to go at a time that isn’t as busy as other times. We also set a realistic time frame of how long we want to stay. Now that the girls are older, we don’t go to places like the zoo or the science center as much. And when we are out in public as a family, we check in with each other to see how our social battery is doing. I am more extroverted, so I am the one that has to be more flexible and understanding of time and when it’s time to leave. That’s usually no more than 2 hours. 

Moderator: Thank you Seasonedmomreviews for the discussion and valuable insights! Everyone, feel free to add your questions in the comment section.