Getting a DSM diagnosis for your child can be a pivotal moment in your parenting journey. It can bring any number of emotions: relief, confusion, worry, validation, helplessness, and so on. Sometimes we can even ping-pong from one emotion to another, or feel many at once.
With a DSM diagnosis like ADHD, Autism, Anxiety, OCD, ODD or some other alphabet soup name, many of us may not know what to do next. Maybe there seem to be too many options. Maybe there don’t seem to be any viable options at all. Maybe you’re too overwhelmed to even consider any next practical steps. Nobody teaches you to expect this or how to handle this when you hold your child in your arms for the first time.
So that’s why I want to use what I’ve learned as a parent and a pediatric occupational therapist to share with you a very simple, step-by-step process.
What you’ll hear in this episode:
- How to navigate through the varied emotional responses after receiving a diagnosis
- My outline for a step-by-step approach on what to do next
- How to prioritize the recommendations for various therapies or programs
- The one therapy I recommend for most kids
Back by popular demand, the sensory Detectives Bootcamp will transform the way you show up to support a neurodivergent child in your life. Instead of being reactive to unwanted behaviors, you’ll be responsive to regulation needs.
Your feelings are valid
We discussed some feelings above, but this is really important, so I want to give this a bit more time and space. Sometimes our minds are such a jumble that we don’t even know we have these feelings or why until we see it written in front of us. So here are some of the emotions that come up for many parents when they first receive a diagnosis, and the reasons why.
- Relief. Maybe you’ve been struggling to understand your child for so long, maybe there was something you couldn’t put your finger on, and now you have something concrete you can hold onto. You have a name of something specific to look up and understand better.
- Validated. Maybe you’ve been the only one seeing these things play out for your child and everyone around you said that it was “normal.” Maybe you’ve felt like a terrible parent because your child is the only one who struggled with x. But with the diagnosis, it’s starting to make some sense.
- Overwhelmed. Even though you got one answer, you may have 27 more questions after reading the report or hearing the diagnosis. Maybe you have no idea where to start or what’s next.
- Confused. Maybe you’ve been hearing conflicting views on a certain diagnosis and now you’re not sure what to believe. Maybe you’ve had an idea of what this diagnosis looks like, and it’s hard to see how it applies to your child.
- Helpless. You may feel helpless because the evaluating therapist or professional gave you an entire packet of things to do more of, things to do less of, therapies to look into, goals to meet, and everything seems either impossible, inaccessible or unaffordable. You feel like you have the answer of what your child needs but can’t give it to them right now.
- Worried. You may feel worried because the future seems uncertain or maybe it feels certain that your child will have a different life than the ideal life you imagined as you project the worst fears onto your child’s future (we all do it). Maybe you’re worried about what family will think, how your child will do in school, will they ever find a life partner, be able to successfully and happily live life to the fullest?
All of these emotions (and more) are completely valid and justified. This is a lot. And I know that at this particular moment in time, it can be really hard to form a plan of action coherently when emotions are so high.
Let this ground you: Your child is the same today as they were yesterday. There is nothing different about them or the trajectory of their life just because there’s now a label and a code next to their name in a chart. Please remind yourself of this. Your child has not changed. If anything, you now have an amazing tool to be able to understand and support your child.
Unlearning the neurodivergent diagnosis stereotypes
I want you to do a little exercise with me.
For those who are new to the realm of neurodiversity and the specific diagnosis your child has been given, think about a person that you know with that same diagnosis. Maybe it’s a person from your childhood, someone at work, a character in a show or movie, another child at school. Think about how this person communicates, moves, thinks. Do you have it?
Now. Forget it.
Throw it out the window.
Here’s why: If you know ONE Autistic person, you know ONE Autistic person.
If you knew ONE person with ADHD, anxiety, OCD, you knew ONE person who had that diagnosis, and the way they experienced it, the way it looked and sounded for that one person. That is to say, each neurodivergent individual is unique and cannot be generalized based on the characteristics or experiences of another neurodivergent person.
Yes, people with the same diagnosis as your child likely has many overlapping characteristics, but there are a lot of things that we can miss and get wrong when we just think of that one example we have in our minds. The spectrum of ways of being neurodivergent is diverse, and individuals with ADHD, Anxiety, OCD, Autism can have a wide range of strengths, challenges, and characteristics that make them distinct from one another.
You may be experiencing fears based on what you think you know about your child’s diagnosis. And I’m here to say, the most important thing is knowing your child more than knowing their diagnosis.
4 simple steps to take after a diagnosis
For parents who feel overwhelmed with where to start and how to propriotize the list of therapies and resources to look into, start here:
- Process. It’s as simple as it sounds, though it can take time. Don’t jump straight into action mode. Instead, take a few days, weeks, months until you feel like emotion isn’t going to be the biggest dictator of any major decisions. For any of us who feel any negative emotions about this diagnosis, sit with it and take the time to process it. This is not an emergency.
- Step away, then revisit. After taking time to process and step away from the mountain of materials you were given by the evaluator, look at them again with a fresh eye. If the report or evaluation recommended seeking school services, or you think your child could benefit from support from the school now knowing this information, this is a good time to start the process of getting that school support in place. You can contact someone at your school or school district to request evaluations for an IEP or 504 Plan (the names of these and the processes to get them will vary widely based on where you’re located).
- Research different therapies. If you’re like me, you can go pretty deep into a rabbit hole of research and have a hard time finding your way out. This is why I recommend time-limiting yourself to 20-30 minutes at a time when you research (Googling, calling) the therapies that have been referred to you, and decide which one you’d like to start with first. Maybe it’s a specific area of life or one lagging skill that is impacting your child’s life most.
Quick tip: If your child was diagnosied with Autism, ADHD, Anxiety or ODD, my truly unbiased opinion is that occupational therapy with a sensory integration lens is probably a great place to start. OT is so versatile and can help your child get into a more regulated state, which then opens the possibilities for the effectiveness of other therapies.
- While you wait. The unfortunate reality is that with therapies and other services, there can be a lot of wait times. Waiting as your child’s name moves up in a waitlist, waiting as offices take time to get back to you. While you wait, list out some of the areas of need that you want to prioritize learning more about (classroom behaviors, sensory needs, picky eating, cognitive flexibility, etc.). Comb through podcasts, books, online courses, programs, work with a parent coach…whatever is available to you at the time.
That’s it! Please take it one step at a time. Remember that this is not an emergency, so you can take your time to learn, talk to people, think, process.
Something you can do today (no need to wait!)
Whether you’re waiting for services, or if your child has been getting support for a while, and you want to learn more and play an active role in your child’s regulation at home, this could be a great time for you to join Sensory Detectives Bootcamp.
In my 4-week live group coaching program for parents, teachers and therapists, over 5 live coaching calls, I teach you all about the nervous system, how to use the biggest power players (tactile, vestibular, proprioception) for your chid’s regulation using practical strategies.
This will be the fourth time I’m offering this course, and I get so much great feedback from our participants that it gets me so excited to host it again and again!
To learn more about the course, click here.
Laura Petix 0:00 Remember that your child is the same today with the diagnosis as they were yesterday without the diagnosis, there is absolutely nothing different, or that changes about them or their life just because now there is a label and a code next to their name and welcome to the sensory wise solutions podcast for parents, where parents can get real actionable strategies to support kids with sensory processing disorder. I’m Laura, OT and mom to Lilyana a sensory sensitive kid who inherited my anxiety and my love for all things Disney. Consider me your new ot mom, bestie. I know my stuff. But I also know what it’s really like in the trenches of parenting a child with sensory processing disorder. Speaker 1 0:49 Okay, mom, enough about me. Let’s try the podcast. Laura Petix 0:56 Hey, everyone, welcome back to the podcast. This is your quick reminder before we get started that the sensory detectives boot camp is now open for enrollment for the January February 2024. Cohort, head over to the OT butterfly.com/boot camp. So you can join us and learn more about how to use sensory strategies and tools to regulate your child like an honorary OT. Okay, so you’re listening to this podcast episode, maybe this means that your child just got diagnosed with a DSM diagnosis. Maybe it’s ADHD, autism, anxiety, OCD, odd, or one of the other alphabet soup names. Chances are, you are feeling a whole bag of mixed emotions right now. Maybe you feel relief, because this feels tangible to you something concrete that you can hold on to and a name of something very specific to look up and research. Maybe you also feel a little validated. Because you’ve been the only one seeing these things play out for so long for your child. And maybe up until this point, everyone around you has said that that’s normal, or you’re just seeing things and now with this diagnosis, you feel validated. You might also be feeling overwhelmed. Because even though you got one answer, you may have now 27 More questions after reading the report or hearing that diagnosis or feedback from the evaluator. And you really have no idea where to start or what to do with this information that’s been given to you. Maybe you feel confused, because you’ve been hearing conflicting views on a particular diagnosis. And now you’re not really sure who to believe. You might also be feeling helpless, because the evaluating therapist or professional or doctor gave you an entire packet of things, to do more of things to do less of therapies to look into. And everything just seems impossible, or inaccessible or unaffordable. And you feel like you have the answer of what your child needs, but you can’t give it to them right now. And of course, maybe you feel worried, because the future seems so uncertain. Or maybe it feels certain that your child will have a less than ideal life as you project the worst fears out into the future. Trust me, we all do this. And you’re worried about what family will think how your child will do in school, will they ever find a life partner and be able to successfully and happily live life to the fullest? I get it. All of those emotions and probably other ones are very common feelings to feel, in this particular scenario, this particular stage of your life with your child. So all of those emotional experiences that you are having right now are completely valid and justified. This is a lot. And I know that at this particular moment in time, it’s really hard to form a plan of action coherently at least when your emotions are so high. So I wanted to give you this episode for some thoughts, some reminders and very actionable step by step place for you to start if you need that. So first and foremost. Remember that your child is the same today with the diagnosis as they were yesterday without the diagnosis. There is absolutely nothing different or that changes about them or their life just because As now there is a label and a code next to their name and a chart, you need to remind yourself of that over and over and over. Next important thing for you to do, if you are new to the realm of neurodiversity, and maybe the specific diagnosis that your child has been given, you might have an idea or a person in mind that has had that diagnosis. So think about that person that you knew from the past that you’ve seen on TV that you know, in the community that has that same diagnosis, take what you know about that person in your mind. Keep that image and description in your mind for a second. Now, forget it, throw it out the window. If you knew one person with autism, you knew one person with autism experience. The same goes for ADHD, anxiety, OCD. Yes, it is true. There’s a lot of similarities and stereotypes that are universal to some diagnoses. And there’s also a lot of things that we miss and get wrong when we just think of that one example one person that we have in our mind, chances are, you may have a picture in your mind of an extreme example, or interaction that you had or witnessed with a neurodivergent individual from your childhood, or maybe seeing it portrayed somewhere in the media. And let me tell you something, Hollywood rarely gets it right. They’ve only recently started actually hiring actually autistic, or actually neurodivergent cast to paint to play neurodivergent characters, but there’s still a long way to go. So if you’re judging what you know, about a diagnosis based off of movies, or TV, or even people in your community that were, maybe you have more of a negative view of that. My point is, this is what you think you know about your child’s diagnosis. And I’m here to say that the most important thing is to know your child more than knowing their diagnosis and how it’s depicted in the world. Of course, you’re going to want to learn how the diagnosis shows up for your child and how that impacts and dictates their behaviors and the way that they learn. But again, just know your child, study your child, your child is the one that matters here. Okay, so that those mindset shifts are out of the way, I hope that sits with you. Well, I hope you take that away with you from this episode. But now we’re going to start with a step by step part, I’m going to give you four steps of what to do when you’re ready to take action. But step one is always going to be something that is a prerequisite for everything. Step one. Process this, do not jump straight into action mode, take a few days, weeks months, until you feel like emotion isn’t going to be the biggest dictator have any major decisions, like I would not pull your child out of school the next day after finding out a diagnosis. This process and time looks different for everyone and every family. Maybe for some of you, the diagnosis is something to celebrate. And it’s just you know, another day of the week and doesn’t really change much, doesn’t really impact your emotion. But if you feel any sense of negative emotion, if you describe this process as something that was completely unexpected, something that you didn’t think what’s going to happen or just is is a huge impact for you personally, as the parent to this child, sit with that and take that time to process before you start jumping into any sort of action or making any big decisions. Okay, step two, get those notes or the reports or those emails or those documents or those tests, reread those, those packets that information that came with the diagnosis, the feedback from the evaluator that you were given that included the recommendations, go through all of that now with a fresh eye after stepping away to process it. Now you have a clear mind, you’ve sat with it, you’ve processed it, you’re reading it with clarity now. And so if so, you’re going to go through those reports. And if the report or evaluation recommended seeking school services or school support, or you think that your child could benefit from school services now, knowing this particular piece of information about them, I would start by putting the request with the school district to request evaluations for an IEP or a 504 plan service, the names of this and the process of requesting it through the school it’s going to vary widely based on where you’re located. But my point is, if your child is not homeschooled if they are in a traditional Some sort of traditional school setting where you would like to request services, I would start there because your kids are in school Monday through Friday. And chances are if they got diagnosed with a DSM diagnosis, they are probably impacted in some way at school. And that is where they spend majority of their week. So I would start there in terms of at least contacting and putting in a request. Then step three, so outside of school services, if you are, if you’re seeking them, I’d spend some time for me, it helps me to like work in chunks, so I don’t get overwhelmed. So I will set like 20 to 30 minutes of time, especially for these kinds of like researching type tasks that I’m going to share with you, I can’t just have it open ended, I have to have a start and an end time so that I don’t get overwhelmed before I even start. So outside of school services, spend some time spend a block of your day, Googling, calling, learning more about what each specific therapy or service that has been referred to you, or has been recommended to you research what each of those therapy therapies do, make sure you understand what they do and what they offer. And so this can lead you down some big rabbit holes online. And a lot of people don’t understand what a lot of the professions do. So start there, you might be getting a recommendation of things like ot CBT, Neurofeedback reflex integration, maybe speech therapy, ABA, there’s a lot of things that you might be recommended. And just because your doctor recommends a certain intervention or a certain approach or a certain therapy, it doesn’t necessarily mean you have to do that, or that it is right for your child. So do your research, look it up, spend some time there. And then decide which one you’d like to start with. First, this applies to people who have been given a list of like two to three to four therapies to start with, if they got given a diagnosis, I suggest pick one that you want to start with first, maybe it’s a specific area of life that’s most impacting your child. So school is already set up, that’s going to be separate. But I’m thinking about the private therapies and things that you might need to sign up for. Is there a specific area of life that is most impacting your child or a skill that seems to be the most impactful for them, maybe speech communication is a huge factor. So starting with the speech therapist is, is great. Here’s a big hint for you. And it’s going to sound like I’m biased, but I promise I’m not biased. This is just really, my, my opinion. If your child got a diagnosis of autism, ADHD, anxiety, or even odd, then occupational therapy with a sensory integration lens, so making sure that the OT clinic that you look for specializes in sensory integration, that is probably a really good, safe place to start for you because it’s so versatile, and can help your child get in a more regulated state overall, which then opens up possibilities for reaching other skills. When you’re more regulated, you have more access to communication, when you’re more regulated, you have less unwanted behaviors. When you’re more regulated, you feel less anxious, there’s a lot of things that a good regulated nervous system can impact and a good ot has knowledge of the nervous system and sensory integration can help that. So if you feel lost, and OT is one of the places that was recommended, that’s a great place to at least start it’s going to cast a wide net and impact a lot of areas of life when you start with ot step four. So after you get that process started, so you search for what’s a priority. Maybe you decide OT is a priority. Maybe you decide speech is a priority, you call them you find your local clinic, you get on waitlists, there’s probably going to be some sort of waiting period at this point, right? Some ot clinics have wait lists like 11 months long, sometimes over a year, some speech clinics have the same, but you there’s not much you can do. So know that sometimes this waiting period is really hard and it’s still you’ve already done everything that you can do. And now you just sort of have to wait for the services to become available. But if the wait is extra long, and you want to feel more active and supporting your child now here is the step of what I would sort of do in this like Limbo period what you do where you’ve already put your child on weightless. Now what I would list out some of the areas of need that you want to prioritize learning about more so maybe The areas that again that they’re most impacted either at school or at home. Maybe there’s classroom behaviors that are really impactful, and they’re on the verge of being kicked out, or maybe their sensory needs at home. And everyday is a battle. Maybe it’s picky eating, maybe it’s hygiene tasks, pick one or two specific topics at a time to research and look for resources on comb through podcasts, books, online courses, programs, work with a parent coach, whatever is available to you at that time, and whatever your preferred learning style is, if you are a reader, or if you’re a podcast person. But But my point is to start, start with one. And the same goes for the therapy. Why I say start with one is because it can, if you’re starting from nothing, it can be very overwhelming to do a lot at once with your child. Now some clinics offer both speech and OT together, that’s great. I’m not saying that it’s completely wrong. But if you’re listening to this episode, because you clicked on it, because you feel overwhelmed and not knowing where to start, chances are, you would feel overwhelmed by doing too many things at once. And so with your child. So sticking with one thing at a time, and knowing that you can still move forward and make progress, even while you’re quote like waiting and feeling like you’re doing nothing just by learning things and, and being a keen observer of your child every day, that still having a positive impact, I promise. Okay, that’s it. I know that this is saying a lot. But try not to get too overwhelmed. I’m preaching to the choir here, because I’m someone who goes full rabbit hole mode, when I learn a new piece of information, and I want to keep learning about that topic. And sometimes I can get burnt out and go overboard, and it leads me to something else, and then I worry about something new. And that’s a really hard place for me to get stuck in. And when we’re anxious about things, we cope with it by learning more about it and filling the void with more knowledge and facts. But like I said, Sometimes less is more and sometimes sitting with what you have. And just knowing you’ve done everything you can is really important. Just know that this first part of your journey is temporary, it feels like a lot right now it feels like you’re never gonna get out of it and it feels like you’re drowning. eventually things will fall into place, you’ll have a clear plan to focus on you’ll have therapies your child is in. And this will be way in the past. If you find that you’re in the between stage right now of waiting for services, but wanting to still learn more and play an active role in your child’s regulation at home, then this could be the best time for you to join sensory detectives boot camp. This is my four week live group coaching program for parents and teachers and therapists. And over the span of four weeks, I host five group coaching calls to teach you all about the nervous system, and how to use the biggest power players like tactile input, vestibular input and proprioception input with practical strategies at home, so that you can move the needle in your child’s regulation. This is the fourth round, I’m offering it and each time I run it, it always leaves me feeling so fulfilled, I get such great feedback. And it gets me so excited to host it again and again. So I’m going to sign off the podcast here. But I’m going to leave you with a few sound bites from a previous number Melissa, who took the bootcamp program twice, because she loved it so much and wanted to learn it again and again. So to learn more about the sensor, detectives boot camp, head to the OT butterfly.com/boot camp, or just scroll down below the show notes to click on the link. Alright, here’s a few words from Melissa, and I’ll see you next week. Speaker 2 18:52 And I’ve also learned, we’ve also learned that he has sensitivity towards his sympathetic nervous system, as he is easily excited, which we have learned makes his heart pound really, really fast, like a lot of us, but then it can make him feel uncomfortable. And it goes he goes right towards aggression. So that’s been something that through your boot camp, you know, not only the sensory seeking, which was incredibly enlightening, but also seeing the sensitivities that he has as well which creates dysregulation. I did not have much of an understanding of neurodiversity, or you know what you had just said around his body meeting things. I would 100% say I came into this before knowing you thinking that I wanted to stop the behaviors and that if I just stopped his behavior, it would not only help me and help me be a more understanding loving parent, but I believed that In getting him to stop it would help him. And I think that that is a very typical thought that a lot of parents have. And it has been whole this this bootcamp and your knowledge has. It’s been like tapping into a whole new world of information and support and compassion for my child in a way that I didn’t even know that I needed to have for him. Laura Petix 20:32 If you enjoyed this podcast, please consider rating it and leaving a review which helps other parents find me as well. Want to learn more from me? I share tons more over on Instagram at the OT butterfly. See you next time. Transcribed by https://otter.ai