#153 - What Do I Do After My Child Gets a Diagnosis?

by Jessica Hill, COTA/L & Rachel Harrington, COTA/L, AC May 19, 2021

#153 - What Do I Do After My Child Gets a Diagnosis?

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What Do I Do After My Child Gets a Diagnosis? 

Receiving a diagnosis for your child for any kind of developmental difference can elicit a wide range of emotions, and that is completely normal. In today’s episode, your hosts Rachel and Jessica, dive into ways to deal with your own feelings around the diagnosis, as well as the best things that you can do for your child once they have been diagnosed. The discussion dives into the importance of doing your research and finding a community; this can be found in online or offline groups. It just depends on what resonates with you. The Harkla Sensory Club, and of course, the All Things Sensory podcast, are great places to go for support and advice. Your child deserves happiness, and so do you; you can’t pour from an empty cup, so make sure you are practicing self-care and always remember that you are not alone on this journey!  

Key Points From This Episode:

  • Feelings that often arise when children are diagnosed. 

  • Why seeing an Occupational Therapist is a good first step if you have noticed your child struggling with something. 

  • Trust your gut instinct if you feel like something isn’t right.

  • Upsides and downsides of Facebook support groups for parents with children who have been diagnosed.

  • Listening to the All Things Sensory podcast will provide you with a lot of helpful information and advice. 

  • Don’t be afraid to fight for your child’s right to get the help and services they need.

  • The importance of processing your own feelings, and not pushing them to the side, after a diagnosis has been given.

  • Research, research, research!

  • Your happiness matters; you can’t pour from an empty cup.

  • Rachel and Jessica share advice from the All Things Sensory Podcast and Harkla Family.

  • What the Harkla Sensory Club is and why you should join. 

Highlights:

“Occupational therapy or OT is kind of the catch all. If you don’t really know where to start, you don’t know what your child needs, OT is a kind of a good place to start because we see the child as a whole.” — All Things Sensory[0:05:18]

“Listen to your gut instinct if you feel like something isn’t right.” — All Things Sensory[0:06:23]

“It’s helpful to see some different people who are navigating the same challenges and going through the same things that you are but just remember that everyone, every child is on their own journey.” — All Things Sensory[0:07:34]

“You have the right and the fight to get what you want for your kiddo while they’re at school and get those services that they need.” — All Things Sensory[0:11:24]

“You’re going to feel like something’s different and you might feel joy, you might feel sadness, you might be feeling confusion, anger, so process those feelings, seek out therapy, seek out friends, talk about it, write about it. Don’t just push those feelings aside, validate your feelings because they’re real and you need to work through them.” — All Things Sensory[0:12:35]

Links Mentioned in Today’s Episode:

Harkla

Harkla Sensory Club

All Things Sensory on Instagram

All Things Sensory on Facebook

Discount Code — SENSORY

 

Full Show Transcript

[0:00:01.4] RH: Hey there, I’m Rachel.

 

[0:00:03.1] JH: I’m Jessica and this is All Things Sensory by Harkla. Together, we’re on a mission to help children, families, therapists and educators live happy and healthy lives.

 

[0:00:12.2] RH: We dive into all things sensory, special needs, occupational therapy, parenting, self-care and so much more. In each episode, we share raw, honest, fun ideas and strategies for everyone to implement into daily life.

 

[0:00:24.6] JH: Thank you so much for joining us.

 

[DISCUSSION]

 

[0:00:57.6] RH: Hello, hello everyone. Welcome to All Things Sensory by Harkla, you are listening to Rachel and Jessica and this is episode 153. Jessica, take it from here.

 

[0:01:11.6] JH: Okay. Wow, that was a lot of pressure right there. We get a lot of parents who say, “My child just got diagnosed, what do I do now?” I think this is going to apply to all diagnoses, not just autism, ADHD –

 

[0:01:37.2] RH: Sensory processing.

 

[0:01:38.0] JH: Sensory processing disorder, developmental delay, a genetic disorder, anything. This is any type of diagnosis that your child gets that changes – 

 

[0:01:51.2] RH: You were prepared for or you weren’t prepared for.

 

[0:01:53.0] JH: Yeah. That’s just – you know, it’s going to change some things but some things are still going to stay the same. We wanted to address this because we know that it can be scary and you just don’t know what to do, it’s a whole new world.

 

[0:02:07.7] RH: It is. Now, Jessica and I are both certified occupational therapy assistants so that’s the background, that’s where our knowledge comes from.

 

[0:02:17.1] JH: That’s our world.

 

[0:02:18.3] RH: That is the world that we live in. It’s a whole new world. Okay, that is not a whole new world but it is for you if you just get a new diagnosis.

 

[0:02:27.1] JH: It could be.

 

[0:02:27.6] RH: Right? For us, we see these kiddos, whether they have a diagnosis or not, we get these new clients on our case load and how do we start, what do we give the parents, what do we give the caregivers who are feeling uncomfortable?

 

[0:02:47.8] JH: Overwhelmed.

 

[0:02:48.8] RH: Overwhelmed, yes. For us, it’s another kid – I don’t want to say another kid on our case load because we truly take every kid on our case load like they’re our own but how do we set their family up for success?

 

[0:03:02.1] JH: Yes.

 

[0:03:02.3] RH: On this journey.

 

[0:03:06.7] JH: Yes, so a lot of families are already receiving therapy before their child gets a diagnosis and maybe that’s how they decided to get a diagnosis was because a professional recommended like “Hey, you know, we’ve been doing speech therapy for a couple of months but I was thinking that maybe you could try going to this place and get tested and just see what they say,” you know? Maybe that’s your journey.

 

[0:03:31.0] RH: When in doubt, rule it out, right?

 

[0:03:32.0] JH: Yeah. Maybe your journey is something didn’t feel right so you went to the doctor, they referred you to a specialist, you got a diagnosis and now, you're going to jump into the therapy world.

 

[0:03:44.3] RH: Maybe you didn’t even realize that your child was struggling or that they were delayed, maybe you just – it’s not your – you don’t have education in this, you're just, it’s your first kid, maybe it’s your third kid. You just don’t know and that’s okay but you come home from the doctor and the doctor says, “Hey, let’s screen for this, let’s make sure that we aren’t having any challenges in this area,” so this was – you almost felt blindsided by someone saying, “Hey, something’s not right” or something could potentially not be right and let’s see what’s next.

 

[0:04:15.9] JH: Yeah. There’s a lot of different ways that people make their way to a diagnosis but regardless of how you got there, how you get there, I do think that one of the best things to do first is to identify your biggest concern or challenge with your child and seek out professional help for it. 

 

For example, if your child is not walking but they’re at an age where maybe they should be walking, just developmentally, then maybe you seek out PT first. You get a list of referral for PT, speech, OT, ABA, all these things but you’re like, “I don’t know where to start.” Well, if your biggest concern is that your child’s not walking or they’re not navigating their environment safely. Then maybe your first step is PT and you just start with that.

 

[0:05:07.2] RH: Yes, physical therapy for those physical disabilities, that’s one way to go. A lot of people don’t even know about occupational therapy and what it is but I feel like occupational therapy or OT is kind of the catch all, you know? If you don’t really know where to start, you don’t know what your child needs, OT is kind of a good place to start because we see the child as a whole and we can say hey, “I’m not trained in this area, maybe you should go see a chiropractor, a pediatric chiropractor. Maybe we could see a craniosacral therapist?” Not to rule that out but to address some of the tissue restrictions, right?

 

[0:05:53.2] JH: I was even going to think too, maybe if your child’s biggest challenge is that they can’t verbally communicate, maybe you see a speech therapist first.

 

[0:06:02.9] RH: Maybe you're not even sure what they’re supposed to be saying at their age, you just maybe feel like you have some friends who have kiddos the same age and they’re talking a lot more and your kiddo isn’t and maybe you’re like not really concerned but your kind of concerned. Just talking about it and advocate, like we always say, listen to your gut instinct if you feel like something isn’t right, you know? Talk to your pediatrician about maybe a speech therapy evaluation and if the pediatrician says, “No, we’ll wait and see” just say, “No, let’s go get it checked out.”

 

[0:06:37.6] JH: Yeah, don’t ever wait and see, my goodness.

 

[0:06:40.6] RH: If you feel like something’s off, something might be off so check it out.

 

[0:06:44.6] JH: Yes, trust your gut. This kind of goes into the next thing we would recommend you do is to – Rachel already kind of said this but ask questions and talk to people, search Facebook. I know Facebook has a lot of groups for autism moms and that kind of stuff. Check those out, join some of them if you feel good about it but be careful because some of them can be more negative.

 

[0:07:16.0] RH: In these groups, they’re not always necessarily professionals in the group so if it’s a mom group or a dad group or a support group, just take it with a grain of salt, the advice that people are sharing. This is advice that worked for them and their kiddo. Most of the time, the advice that they’re sharing, it’s not going to be applicable to your kiddo so it’s helpful to see some different people who are navigating the same challenges and going through the same things that you are but just remember that everyone, every child is on their own journey. 

 

If you want to join some of these Facebook groups, these mom groups is what they’re often referred to, just take what you're reading with a grain of salt and if you feel like it’s more negative and if you're feeling like it’s kind of affecting you and triggering you, then you don’t need to participate, you know, maybe find some real life groups.

 

[0:08:08.7] JH: Yes.

 

[0:08:09.2] RH: Weird, right? I know it’s a little bit hard in this day and age but –

 

[0:08:12.3] JH: It’s getting better.

 

[0:08:14.1] RH: It is. That could be something else that you look into as well.

 

[0:08:17.7] JH: Yeah. Now, we’re a little bit biased on this next recommendation but we still think it’s a good recommendation. We would say, listen to our podcast, we have episodes on pretty much everything.

 

[0:08:31.7] RH: Yes, we do have a lot of great episodes, a lot of great interviews with parents of kiddos with different abilities who just put it into perspective so freaking well.

 

[0:08:44.3] JH: They have great advice because they’ve lived through it.

 

[0:08:47.9] RH: Yes. We can only give so much advice being professionals, we haven’t been in the moment as a parent of a kiddo with different abilities. We can only give so much advice and so much professional advice but hearing it from someone who is going through it, there’s just – it’s magical, so helpful and most of the people that we interview have social platforms that will answer your questions and you can reach out to them and talk to them and just befriend them.

 

[0:09:20.4] JH: Yeah, absolutely.

 

[SPONSOR MESSAGE]

 

[0:09:22.1] RH: We just want to take a minute and talk to you about our company Harkla. Our mission at Harkla is to help those with special needs live happy, healthy lives. Not only do we accomplish this through the podcast but we also have therapy products, easy to follow digital courses and the Harkla Sensory Club, to try to bring holistic care to you and your family.

 

[0:09:40.6] JH: Listeners of the All Things Sensory Podcast get 10% off their first purchase at Harkla with the discount code “SENSORY.” We’d recommend checking out some of our bestsellers like the compression sensory swing, weighted blankets or our course on sensory diets. 

 

[0:09:55.3] RH: Here’s the best part, one percent of each sale gets donated to the University of Washington Autism Center to support autism research and fund scholarships to families in need to receive in-clinic therapy for their child. 

 

[0:10:07.4] JH: Learn more about Harkla and all we have to offer at harkla.co, that’s harkla.co and don’t forget to use the discount code “SENSORY” to get 10% off your first purchase. That’s “SENSORY” for 10% off. 

 

[0:10:28.7] RH:And the best part is all Harkla orders come with a lifetime guarantee and free shipping. 

 

[0:10:35.8] JH: You really can’t beat that. 

 

[0:10:36.9] RH: No. 

 

[0:10:38.6] JH: No you can’t. Okay, let’s go back to the show. 

 

[DISCUSSION CONTINUED]

 

[0:10:41.5] JH: If your child is in school, you’re going to want to communicate with your child’s school, with the principal, their teacher, their counselor that you have just received a new diagnosis. 

 

[0:10:55.0] RH: We do have an episode on IEP’s and, you know, kind of the occupational therapy world at school, what you need to advocate for, how you advocate, how you get the [mono five 0:11:07.7] or an IEP because if they are struggling at school, maybe that is how you got to a diagnosis in the first place is from someone recommending it from school. You know, be conscious of, they’re on your team, they work for you and you have the right and the fight to get what you want for your kiddo while they’re at school and get those services that they need. 

 

[0:11:32.4] JH: Yeah, absolutely. 

 

[0:11:33.4] RH: I just feel like – you know, we just have so much passion to say it, I just feel like we have to be the voice for these parents, you know? 

 

[0:11:41.3] JH: I know. 

 

[0:11:41.7] RH: Because so many of them just don’t know that they have a voice. 

 

[0:11:44.5] JH: I know, you have to speak up and advocate. Do your research, research, research, research and I think that the majority of the parents that we have interviewed on this podcast say that they have spent hours researching. 

 

[0:12:00.6] RH: Yes, like as soon as they got a diagnosis, whatever it was, they just head into the books, into the Internet, into podcasts just to learn as much as they could about it. You know, if you had fears about it, about this specific diagnosis, if you don’t know what it is, do your research, learn as much as you can and then you can kind of develop a plan to move forward. 

 

[0:12:26.0] JH: Yeah, I think a big thing that you’re going to need to do is really process your feelings because once you get a diagnosis, you’re going to feel like something’s different and you might feel joy, you might feel sadness, you might be feeling confusion, anger, so process those feelings, seek out therapy, seek out friends, talk about it, write about it but don’t just push those feelings aside but validate your feelings because they’re real and you need to work through them. 

 

[0:13:02.1] RH: Yeah and in the world of self-care, you know, just taking care of yourself as a parent, I think just taking care of yourself and realizing that maybe therapy for you wouldn’t be a bad idea and don’t stop doing the things that bring you joy because the minute you stop doing those things, that’s when your child suffers because you have to be happy. Your cup has to be filled up because you can’t pour from an empty cup and, you know Meg-Annn, she says you can’t put the child’s oxygen mask on first because you have to be alive and have your oxygen mask on in order to put theirs on. 

 

[0:13:39.3] JH: I mean that is the rule on the airplane as well and it’s there for a reason because you can’t help someone if you aren’t in a good place. 

 

[0:13:49.2] RH: Yeah, okay so we have a beautiful community on Instagram of lovely people of our lifers, of our tribe that we just love dearly and we asked them, we asked you what advice you’d give someone who has a new diagnosis so we want to share those responses with you all. 

 

[0:14:11.2] JH: Yes, so we did just like a Q&A box on All Things Sensory Podcast and Harkla family. 

 

[0:14:17.9] RH: These are all anonymous. We are not sharing who these are, who said them so – 

 

[0:14:22.4] JH: If you said it, thank you and such great advice. 

 

[0:14:27.3] RH: Okay, first one. A diagnosis is a good thing, it can help find answers and strategies. 

 

[0:14:32.9] JH: Trust your instincts and never stop advocating.

 

[0:14:37.4] RH: Allow yourself to grieve and mourn. A diagnosis can be a loss of a dream, an idea and a vision. Don’t rush the process. 

 

[0:14:47.2] JH: In the hard moments, remember that your child is having a hard time, not giving you a hard time. 

 

[0:14:54.3] RH: Join Facebook groups of autistic adults. They are more than willing to help guide you. 

 

[0:15:00.3] JH: Celebrate the little victories. 

 

[0:15:03.9] RH: Your child is not his or her diagnosis. Accept that it is just a different path. 

 

[0:15:10.3] JH: Find a balance so you don’t get overwhelmed trying to do too much. 

 

[0:15:15.6] RH: Be excited for what they’re excited about. Don’t focus on missing out. 

 

[0:15:20.2] JH: It’s your choice to share the diagnosis when you’re ready. Take time to process. 

 

[0:15:27.6] RH: It’s okay if you don’t see the diagnosis as a blessing or awesome, for some the grief is real. 

 

[0:15:35.1] JH: Don’t feel guilty about the diagnosis. Embrace your child for being special. 

 

[0:15:40.2] RH: Be patient and advocate for your child’s needs. You got this and you are not alone.

 

[0:15:46.8] JH: You are your child’s best advocate and know their needs. Don’t be afraid to voice them. 

 

[0:15:53.0] RH: Get support.

 

[0:15:54.6] JH: Your child is still the same person you’ve loved every day. 

 

[0:15:59.7] RH: Now they will have access to more resources and more support. 

 

[0:16:04.5] JH: I want to type this up for a freebie, these are so good. 

 

[0:16:09.1] RH: Yes. I think we just need to create a handout for you all to download and to frame, put on your refrigerator, give to your spouse, give to your partner, give to your family members.

 

[0:16:21.6] JH: Yep. 

 

[0:16:22.8] RH: When you’re ready of course. 

 

[0:16:24.0] JH: This shit’s good. 

 

[0:16:25.0] RH: Yeah, I have goosebumps, you guys. 

 

[0:16:26.9] JH: I know, I was just reading them and I was like, “Oh my gosh.” 

 

[0:16:29.5] RH: I felt good, these are people who are living it, who are going through it and who have really important messages to share. 

 

[0:16:37.7] JH: Yes, so if you’re listening to this episode just make sure that you’re following us on Instagram, see who else is following us and reach out, connect with them because they are going through the same thing that you are going through. 

 

[0:16:53.8] RH: They’re ready to do the work, they’re ready to make a difference in their child’s life. They’re ready to help them, they’re ready to implement sensory activities every day. You know, we do want to throw a plug in there for the Harkla Sensory Club, which is the community that we have. It is our podcast on steroids and it’s a safe place for parents and therapists and educators to just come together. We share resources, videos, activities, research and we just have a community of people who are willing to help and you can connect with. 

 

[0:17:31.2] JH: I was going to say almost daily somebody posts a question or comment and someone else responds with a suggestion or a recommendation or a story and it’s just so cool to see everybody connecting and you can join that club at any time by the way. 

 

[0:17:49.4] RH: You can, yes. We’ll put the link in the shownotes for you to join. You do get your first month free but it is a paid community because when you pay, you pay attention and because Jessica and I put a lot of work into the resources that we share, so we want people who are in it. 

 

[0:18:08.7] JH: Dedicated, yes. 

 

[0:18:10.8] RH: We always say like you join and that’s when the real work begins because you have to consistently implement therapeutic activities for your child and we support you guys so we’re here for you. If you have questions, reach out to us on Instagram at All Things Sensory Podcast.

 

[0:18:31.5] JH: If you liked this episode, let us know. We are a podcast DJ’s, so whatever you want us to talk about we will most likely do it. 

 

[0:18:41.2] RH: Unless it’s like squirrels or something, we probably won’t talk about squirrels.

 

[0:18:46.4] JH: Yeah, I don’t think there’s such a thing as sensory squirrels. 

 

[0:18:50.3] RH: That would be cool though, I like the alliteration. Thank you all for listening today. Thank you for taking the first step and listening to this episode to be able to help your child, understand your child even. 

 

[0:19:04.4] JH: Yeah. 

 

[0:19:05.1] RH: Yeah.

 

[0:19:06.4] JH: Yeah, we’re happy. We’re happy you’re here. Cheers, exactly. Okay, until next time.

 

[0:19:11.0] RH: We’ll see you all next Wednesday. 

 

[END OF DISCUSSION]

 

[0:19:16.0] RH: Thank you so much for listening to All Things Sensory by Harkla. If you want more information on anything we mentioned in the show, head over to harkla.co/podcast to get all of the show notes.

 

[0:19:27.0] JH: We always have the show notes and links plus full transcripts to make following along as easy as possible for everyone. If you have follow-up questions, the best place to ask those is in the comments on the show notes or message us on our Instagram account, which is @harkla_family. If you just search Harkla, you’ll find us. 

 

[0:19:46.5] RH: Like we mentioned before, our podcast listeners get 10% off of their first order at Harkla, whether it is for one of our digital courses, one of our sensory swings, the discount code “sensory” will save you 10%. That code is “sensory.” Head over to harkla.co/sensory to use that code right now so you don’t forget. 

 

[0:20:09.0] JH: We’re so excited to work together to help create confident kids all over the world and work towards a happier, healthier life. 

 

[0:20:16.7] RH: All right, we’ll talk to you guys next week. 



BORING, BUT NECESSARY LEGAL DISCLAIMERS

While we make every effort to share correct information, we are still learning. We will double check all of our facts but realize that medicine is a constantly changing science and art. One doctor / therapist may have a different way of doing things from another. We are simply presenting our views and opinions on how to address common sensory challenges, health related difficulties and what we have found to be beneficial that will be as evidenced based as possible. By listening to this podcast, you agree not to use this podcast as medical advice to treat any medical condition in either yourself or your children. Consult your child’s pediatrician/ therapist for any medical issues that he or she may be having. This entire disclaimer also applies to any guests or contributors to the podcast. Under no circumstances shall Rachel Harrington, Harkla, Jessica Hill, or any guests or contributors to the podcast, as well as any employees, associates, or affiliates of Harkla, be responsible for damages arising from use of the podcast.

Keep in mind that we may receive commissions when you click our links and make purchases. However, this does not impact our reviews and comparisons. We try our best to keep things fair and balanced, in order to help you make the best choice for you.


This podcast should not be used in any legal capacity whatsoever, including but not limited to establishing “standard of care” in a legal sense or as a basis for expert witness testimony. No guarantee is given regarding the accuracy of any statements or opinions made on the podcast.

Jessica Hill, COTA/L & Rachel Harrington, COTA/L, AC
Jessica Hill, COTA/L & Rachel Harrington, COTA/L, AC

Rachel Harrington, COTA/L, AC and Jessica Hill, COTA/L both Certified Occupational Therapy Assistants (COTA). They have been working with children for over 6 years in outpatient settings. Rachel and Jessica specialize in creating easy-to-digest, actionable content that families can use to help their child's progress at home. Rachel and Jessica are the in-house experts, content creators, and podcast hosts at Harkla! To learn more about Rachel and Jessica, visit the Harkla About Us Page. Make sure to listen to their weekly podcast, All Things Sensory by Harkla for actionable, fun advice on child development.


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