From Diagnosis to Determination: A Mother’s Journey Through Special Education Advocacy

 

Transcript

ANNOUNCER:  This is Curious Incident, a podcast for special needs families, and your window into the world of special education. Special needs parenting can be challenging, and we want to make it easier by providing you with the resources you need to help your child. Stell deep into the world of learning differently with your host, special education attorney Adam Dayan.

ADAM:  I am pleased to present my next guest Dani Amirian. Dani Amirian is a mother to three beautiful children aged 7, 5, and 1 and a half. Dani spent eight years working in media marketing at CBS Television Network and at Condi Nast Entertainment before deciding to dedicate her full time and attention to advocating for her eldest child. Through that experience Dani has gained a wealth of knowledge and nurtured a network of professionals which has made her a powerful force in advocating for those who have unique learning needs. Dani, welcome. It’s a pleasure to have you here.

DANI:  Thank you so much for having me. I’m excited to be here.

ADAM:  Of course, excited to have you. So where does your story start?

DANI:  Where does my story and my journey begin? So my journey started very early on in James’ life. So James is almost eight years old and at about four months old one of James’ eyes sort of looked like it was crossing. And my husband was concerned. We reached out to our pediatrician. Our pediatrician assured us that a lot of kids’ eyes sort of they’re not set in their ways until about six months. But if we saw it continue to occur that we should see a pediatric ophthalmologist. So we started to notice that it even got worse. We saw it kind of crossing out, crossing in sort of like a cross eye look in both eyes. So we saw one pediatric ophthalmologist who said, look, your son James has formed something called Stribismas. I’m sure a lot of people have heard of it. It’s very common in adults as well. It’s where you actually cause your eye muscles to tighten. This can be due to high muscle tone in your body where you sort of tense up. And somehow James has managed to tighten his eye muscle so much so that they’re in both eyes and we’re seeing it in the interior eye muscle and the exterior eye muscle. This pediatric ophthalmologist had recommended patching. One eye and patching the other. I’m sure a lot of people have heard of that. It’s a very old school sort of way of forcing you to use one eye to strengthen it and to loosen it. We saw a second opinion, which is a great life lesson. Oh, we see a second opinion. And he assured me that you can patch from today till tomorrow. Don’t torture yourself and don’t torture your four or five month old son. He’s managed to tighten his eye muscle so much that you have no choice but to do the surgery. They will not operate on a child until they are seven month old because they will not put a child under seven months old under anesthesia. So the day that James turned seven months old, we were in at NYU with the best of the best. The surgery was seamless. They essentially go in and actually loosen the eye muscle. So the way that this doctor explained to me and my husband what was happening with James is he said, essentially James is not seeing binocularly. So think about that as not seeing dimensionally. It says, if you have a knot in your neck and you have the ability to look forwards and to completely turn, but when you have a knot, you stop. But when you loosen it, you’re able to turn all the way. So what had happened was James wasn’t hitting very key developmental milestones that were obvious even to new time parents, seeing other peers and friends, kids doing certain things. He was not sitting up. He was not putting anything in his mouth. So that’s very common for kids for sensory growth. He was having a very hard time chewing foods, swallowing foods, all kind of related to muscle tone, which we’ll talk about a bit later. And all of this was really prohibiting his growth. So after the surgery, the surgery was a success. His eyes were aligned. It was a home run. However, now you need to play catch up. So when I had spoken to my pediatrician, he had recommended their services called EI, early intervention, you’re a New York City taxpayer. You go through the city and there should be free services for you pending their assessment of James. So I quickly went down this avenue. I had no guidance whatsoever, which again, I will talk about a bit later. And we had to work tirelessly for almost a year to kind of get James to catch up on all those milestones that were missed due to the Stribus miss in the beginning. We blamed everything on the Stribus miss and the eyes, but later on, as you start to learn a bit more about global delays and motor planning delays, you start to see that everything is interconnected. And typically when children are struggling, it’s not due to one simple thing. There’s a lot of little things that kind of add up and cause a delay. So that’s how our journey began.

ADAM:  What did you learn it was connected to? What else was going on?

DANI:  In the beginning, the obvious thing is the kid can’t see. He’s not seeing dimensionally loose in his eyes. Give him the tools. Let him catch up. But the reality is what caused the eyes to cross in the first place is that he’s high muscle tone and he’s low muscle tone. So after working with some therapists, it was clear, which is common with a lot of kids that he was a low muscle tone in his core, but he’s high muscle tone in his arms and his legs, which forced him to cross his eyes. So you need to strengthen the weak muscles through PT and OT and you need to loosen the tight muscles also through PT and OT from a speech perspective. He wasn’t super verbal. He was very delayed in speech. Why? Why was chewing difficult for him? Why was swallowing difficult for him? Well, it was difficult because again, going back to the muscle tone, he was low muscle tone in his mouth. So you have to build back up those muscles and when the muscle tone in your mouth is low, it affects how you’re able to chew, how you’re able to use your tongue. So the muscle tone, having a deficiency in both, has caused speech delays, motor delays, physical delays, fine motor delays. It’s affecting a lot of different areas.

ADAM:  What formal diagnosis or diagnoses did he receive?

DANI:  So James technically has a language based learning disability, ADHD and a motor planning delay slash a coordination disorder.

ADAM:  The strabismus was a signal to you that there was more going on and you contacted early intervention, you started getting set up with some therapies and you were on your way to begin addressing the issues that James was presenting.

DANI:  Correct. So at the time I was still working in media, I worked a nine to six job and I called tirelessly this number that was given to me by my pediatrician and it was no easy journey or short journey, I should say, to finally get in contact with the city and get them to agree to come and evaluate your child. And the way that it actually works is they send about five different specialists and you need to coordinate with each one of those specialists, a time that works for them and a time that works for you and your child and they come into your home and they actually do an assessment of your child. Once they wrap all of that up, they make a suggestion and a recommendation where you personally go in and have a meeting with the city and they say your child qualifies for X amount of PT, X amount of OT, X amount of feeding, X amount of special instruction and then you get put in touch with a coordinator who may or may not be good and or responsive who then connects you to a bunch of different agencies of therapies that again, you know, it’s kind of hit or miss with EI. So it is sort of a lengthy journey from start to finish that’s very much dependent on how quickly the city’s moving, how quickly you can get the evaluations done. I personally didn’t waste time with that. I also had him working in some private speech therapy and OT and PT, which was just me being a very proactive, get it done, attack the issue type of person. So I didn’t waste those three to four months where I knew it was so pivotal for James to hit these milestones and I couldn’t be reliant on the city. That is how our journey began. And we always say the strip business was it was our lucky sign because it was such an obvious issue that kind of opened the door to deeper issues that most parents probably don’t see until a bit later. A lot of parents either notice something because they’re not hitting a very key developmental milestone and or usually when they enter a twos program and they hear from heads of school or teachers that they’re kind of struggling in this area or that area. So we got very lucky that we were able to attack this issue very early on.

ADAM:  That’s a good way to look at it. So I want to talk more about the EI services, but first I want to understand how the strip business and the surgery and all of the surrounding issues were affecting the dynamics in your family. How is that affecting home?

DANI:  James was our first child. So for a while it was just him. And then we had our daughter, Jules, who’s now five and a half, who moves at a very quick speed. And now we have our baby Jacqueline who’s still a little bit young to compare, but it has not been easy at all. It’s been a journey in itself. Every person and every parent hand those things very differently. I personally being the mom. I’m very tough. I’ve always lived my life. If there’s a problem and you’re able to fix it, it’s always good news. Let’s do whatever it is that we can to attack and to fix and to try everything and talk to everybody. For my husband, it’s his son. It’s a little bit of a tougher pill for him to swallow. So I think there’s been a lot of management at home of sort of shielding him a bit. He’s been obviously so supportive and he’s there, but my side, but there are certain things that it’s harder for a parent or for certain people to process. So that’s definitely been a bit of a job in itself, just calming down the situation and reminding that this is all fixable and workable and we’re going to get there. And there’s a lot of frustration at home. As James has gotten older, things are getting a little bit easier in some ways and harder in some ways. It’s like parenting. When they’re babies, it’s little kids, little problems. And as they grow, the problems kind of become a bit more complicated. So as James is growing up, it’s been challenging from like a sports perspective, let’s say my husband, of course, it’s his only son. He grew up being a very great athlete. He wants his son to be a great athlete. James is athletic, but James can’t function in a group setting of sports or a league. Like other kids can because it’s overwhelming for him. He needs more redirection. Is he as good at the skill? Sure. But he needs to go through that process and play in a different way. And it’s challenging watching your second child be more advanced in every department, whether it was potty training or speaking or now we’re up to reading and rating, is a challenge as a parent, right? Because the number one thing you can do as a parent, and I always believe this, it’s not about smart or not smart, good at school. It’s always about instilling confidence in your child. You cannot teach confidence, excelling in certain things. That’s hard work and that can always be taught. Confidence is something that needs to be instilled in you as a young child and from home. So the number one thing for my husband and I is that James never loses his confidence. And I’m proud to say at almost eight, we’ve never given him even the chance to lose any semblance of confidence, but I think that is key.

ADAM:  And we’ve talked about your job. You were working full time and then you made the decision to stop working so that you can focus fully on James. Do you want to say a little bit more about that?

DANI:  So I love to work. I’m very much a doer. And believe me, I’m on multiple boards and I’m always working on a new venture. I like to work. I like to feel productive. Media was always my passion. I held several internships in the media field. I came out of college. I worked at CBS television network. You know, you touched on that. I was over at Conde Nast and I love to work. When it was around the COVID time, my company, I went back to CBS after I took a short stint at Conde Nast, sorry, I went back to CBS and CBS was merging with Paramount. Sorry, I’m thinking back to the UPN days and a lot of people were walking away. And I saw it as a kind of, I don’t know if you want to say it was a sign or an opportunity for me to walk away, kind of take a little bit of a package deal and focus on James. It was a struggle going to work, getting there at nine o’clock, not being able to leave at six, even if my work was done at three o’clock, missing all these therapy sessions, never being there to never being able to pick him up from school. And at this point, I had had my daughter, Jules as well. And I just felt like it’s time to sort of shift and dedicate my time and my energy to my son. And I’m very grateful that me and my husband had the ability and the means to do that because I understand when in some families and in some households, it’s not an option.

ADAM:  What is your advice to parents who don’t have the opportunity to leave their career to become a full time parent? Any hints or recommendations that you would make to them?

DANI:  Yes. I don’t think one way is better than the other. I think there’s always a way to do it all. I think it’s a very personal sort of not only choice, but situation that you’re in. And I think even if you are working and you want to work or you have to work, right, there is still a way to be there for your child and to advocate for your child the same way you are when you’re not working or in the workforce. You need to stay extremely organized. You need to make sure that you’re in very close contact with the educators of your child, with their teachers, with their team, with their therapist, whether that’s through the city or privately. You need to also make sure that everybody’s connected and it’s important that whenever you can drop in or set up some time, especially at young ages, you need to understand how therapists are working with your child. Number one, it’s important that they meet you because you make sure that they’re actually working on the goals that your child needs to hit, right, in order to improve. And number two is it’s very important that you’re learning the skills that they’re implementing so that you can implement them at home in the morning, on the weekends, on vacation. You see progress with kids or with anyone. It all comes down to repetition. And no matter what great therapist you work with or what great schools you go to, therapy sessions are 40 minutes, 30 minutes, an hour. What happens after that? People, okay, there’s summer break, there’s December break, there’s spring break. You as the parents, the home is always number one. Like I said, it’s the number one place that’s going to help you instill values and confidence. It’s also the number one place where you have the opportunity to repeat the repetition. If you are not connected or aware of the different exercises and the different techniques that are being introduced to your child, how is your child supposed to grow? Additionally, if there’s no face time, it becomes less personal for these professionals. And I think that that’s key. And lastly, making sure that everybody is working together. I can’t stress enough. That has helped. James make huge gains. I have his school team. I have his personal team and myself. And I am constantly making sure that everyone’s in communication. When everyone works together, you see much more progress.

ADAM:  I think that’s so important. Being on the same page, having consistency across the board, making sure, as you said, what’s being done at home is reinforcing what’s being done in the sessions. And you made a really interesting point about giving the providers a family and a person to fight for. The more involved the parents are, the more the providers feel connected and see that they’re working to benefit a family.

DANI:  Exactly.

ANNOUNCER:  If you like what you are hearing, please let us know by subscribing to the Curious Incident Podcast and letting other special needs parents know about it too. If you have thoughts, questions, comments, or would like to suggest ideas for a future episode, we’d love to hear it. So email your feedback to podcast@dayanlawfirm.com.

ADAM:  So let’s get back to early intervention. You talked about some of the services that were put in place. You mentioned speech therapy, occupational therapy, physical therapy. Do you want to talk about what difference that made in James’s progress and development?

DANI:  It took me a little while to find the right team of those therapists. They worked with me. I did my best to be home whenever I could for these sessions or sometimes they would even record them for me when I was at work. So just so I could stay up to date with what’s going on and ensure that we implement all the tools and skills as much as possible. But I also was working with a private team. I made an extra effort with all these EI therapists to ensure that they were comfortable to work around their schedules, to be there, to offer them coffee when they walk in. You know, sometimes it’s just the little things. But we did. We did see improvement. It wasn’t from one specialist. It was a team effort. It was the connection of my four or five EI therapists in conjunction with my private speech and my private OT. So we were very much a team. But it took me almost to the last six months of qualifying for EI for me to find a fully stacked EI team.

ADAM:  So you had a lot of providers involved. How did you stay organized about it?

DANI:  If any of my friends would say one thing about me, they probably say that I’m an organized, I’m a maniac. I love excels and I love lists. And I still remember in my office on 52nd Street when I worked at CBS, I had a huge bulletin board and I had James Monday, Tuesday, Wednesday, Thursday, Friday, OT, PT, 30 minute blocks, 40 minute blocks. I would have colleagues and clients come into my office and say, what is this board? Like, this is my son, James, this therapy board. This has nothing to do with school and music classes. And it’s, it was overwhelming, but there’s a way to stay organized. You know, whatever works for you, for me lists work great, for some people. It’s a calendar, but you do need to stay organized because if you don’t and you’re trying to keep track of even four therapists, let alone seven and then there’s school day. And if you have some nannies or people helping you, I mean, it’s just a lot to manage. It’s a lot of organization.

ADAM:  Who it owes to you? That’s really impressive. What other support systems are essential? Who did you rely on in terms of family, friends, support groups to help you navigate this whole crazy process?

DANI:  So my husband’s always been my number one rock and my number one supporter. He sort of, you know, has always given me the green light. I trust you over everyone, whatever you say will do. So at whatever cost, at whatever sacrifice. That’s a good man. He’s a good man, right? He’s, what do they say? Happy wife, happy life. So my husband, I would say is my number one rock, but I’m very grateful. I have incredible parents and incredible in-laws who have always been nothing but supportive and have helped us compensate in a lot of ways. Sometimes, you know, weekends hit and James has gotten a bit older, you know, and he doesn’t have these sports leagues and all of these things. And just the amount that his grandparents have, not just the love, right, but the amount of time that they’ve spent with him and just being there for us and ensuring us that it’s all going to be okay. And there’s light at the end of the tunnel. You weren’t great at school either. You had these struggles. Everyone has struggles. You’re going to get through it. And then of course, you know, I have incredible friends who have been by my side from day one that have always been cheerleaders and any time they hear anything that might be helpful. They’ve always shared that information with me. And as you go through the motions and the years, you become more experienced as a parent and you meet so many different people, peers, professionals in this community. And you gain so much knowledge and it gives you that much more confidence and it empowers you to do more, learn more, keep going. So I’ve been very, very, very lucky.

ADAM:  There’s so much information out there and sometimes it’s hard to know where to start. And I’m wondering if there was some kind of turning point or specific resource that made the process easier for you.

DANI:  I don’t want to say that all of the professionals that I’ve met and even school educators along the way haven’t helped because everything that everyone has, you know, brought to my attention, they’re like those mini puzzle pieces, right? But there was never one thing that really made everything click and made that really tiny puzzle come to life. Part of that could have been because James was really young. Part of that could be because I just don’t think that they’re in at least in my eight years of exploring this field in the New York area. There isn’t a one stop shop resource to help navigate parents through any version of this world process struggle, which is actually why me along with a good friend of mine are working on a new business venture that we’re super excited about. We’re hoping to launch in another month or two called reimagine reimagine together. The idea is is that parents need in this space. They need to reimagine their path for their child and the way their life might look. And you also need to reimagine the child’s path. And I know that that might be difficult because the idea of this business is me and my friend who’s a mom in this space as well, we get it. We’re doing it. We’ve sacrificed everything you’re feeling, you’re nervous about, you’re worried about severe, not severe. We’ve been there. We have a lot of connections and shortcuts and resources and we’re going to help simplify this for you. So what we’re looking to do is to become that resource that can help be that turning point for parents that not only connects them to the best and it’s not just specialists, it’s processes, managing their time expectations, whether they want to pay out of pocket or stay in network, right? There’s EI, there’s CSE, there’s CPSC, there’s OT, there’s types of OT, there’s PT, there’s speech, there’s types of speech. Going into a specialized school, specialized school placement, right? Hiring attorney, suing the DOE, getting a neuropsych evaluation, suing for your money back for your neuropsych evaluation. There’s recreational activities. Are there adaptive classes that would work great for my child outside of school camps? Are there decamps and sleep away camps that offer more support that allow CS? You know, this is a whole world that is just untapped and we feel like there’s a huge void. So we’re super excited about that. So I’m hoping that you’re going to ask me that question in a year and I’m going to have your answer.

ADAM:  You’re going to come back on the podcast. I’m going to come back. We’ll do a follow up episode. I’m going to hold you to it. I’m going to hold you to it. I mean, that’s exciting. And I think as you were listing all those things, that’s part of what can be overwhelming for parents that there’s so much to learn about. And it’s not always a light bulb moment. It’s sometimes small incidents that you got to pay attention to and follow that path and learn a little bit more and follow that path. And it’s so important for parents to be able to access this information and these resources and figure out what they need to do to fight for their children.

ANNOUNCER:  Exactly. If you like what you are hearing, please let us know by subscribing to our podcast and letting others know about it too. If you have thoughts, questions, comments or would like to suggest ideas for a future episode, we’d love to hear it. So email your feedback to podcast@dayanlawfirm.com.

ADAM:  So we talked a little bit about CPSC for preschool and CSE for school age. Was your experience dealing with those committees similar or different from your experience dealing with early intervention?

DANI:  So I actually, I dealt with EI, which we spoke a bit about before, and I actually skipped over our CPSC simply because my coordinator never really presented it to me properly with the proper understanding and advocated for it. And it was a mistake looking back. And again, I wish that I had a resource that would have told me, take advantage of this. This is just extra support. You know, it’s a little bit more work on your end staying on top of maybe your coordinator in these therapists, but this is extra support that could be provided for James inside school. Why wouldn’t you take it? Unfortunately, I never had experience in that space.

ADAM:  And how would you characterize the experience of dealing with CSE at the school age level?

DANI:  I think it’s a bit better. I think it’s a bit better. I think anything in this sphere, right, of any of these processes through the city, they’re never simple, right? There’s always a little bit more legwork that needs to be done by the parents. But I think that I’ve actually found that at the school level, maybe it’s slightly better. I think it’s the same type of persistence and staying on top of the city. I think that parents need to keep in mind that it is a bit more of a process.

ADAM:  Dani, what are some common misconceptions about your child’s unique needs that you’d like to address?

DANI:  So with my son, James, there’s no obvious sort of a random person met James on the street. They would never think anything. I think really where James’s struggles and challenges are noticeable is when he’s amongst his peers, right? And you kind of see the different way. You know, his speech isn’t as clear. He’s speaking, of course, and he communicates, you know, his speeches and as advanced. Put him in a sports setting, you know, the way that he processes instructions and information. It needs to kind of be broken down a bit slower and repeated and he gets very easily distracted. So I think in general, not just with James, any child with any sort of special needs or if you want to call them, I always call them special children, right? Because they are special and they are going to find their way and they’re going to be very successful members of society. I think that a lot of people, you know, kind of have this misconception is like, there’s something wrong with that maybe or they’re just different and that this is a forever. This is not a forever. Those kids in this sphere, especially with LBLD, language based learning disabilities, these are fixable areas of struggle. Someone that I respect very much, who is an educator, I’ll never forget I was sitting in her office. I think James had finished nursery and I said to this woman, so what do you think? And she looked at me with tears in her eyes and she said, I wish I came in contact with more parents like you and it made me cry. And she said to me, you mark my words. One day I don’t know where I’ll be old and gray, but you’re going to call me kids like James. I’ve been doing this. She said I’ve been doing this for 35 years. Kids like James end up on Wall Street. These kids, they know how to work. I think it’s a very empowering thing for parents to think about just because they’re doing things differently and maybe sometimes they even look different. It doesn’t matter. They have just as many tools inside of them to succeed. Learning and doing things differently doesn’t mean you don’t get to the same end result. And I think that that end result is very much dependent on the parents and how they handle things. We spoke about instilling confidence, giving them all the tools that they need to not just pick up the skills to become that person on Wall Street, but to have it in them, to have that confidence, to have that love.

ADAM:  I’m feeling a little emotional from that story.

DANI:  It’s a little emotional. I’m telling you, this is this space and this journey. It’s an emotional roller coaster.

ADAM:  When you need teachers like that, a woman you described who are able to see the child for the child they are, see the student and what they’re capable of, and it makes all the difference in the world. It’s going to make all the difference for James having the right support.

DANI:  Absolutely.

ADAM:  I hope so. Of the people you and James have worked with, I’m talking about the providers. But about their characteristics or skills or expertise has made a difference in terms of James’ learning and development.

DANI:  I have found a team of therapists that adore my son and are insanely talented in their own world and sphere. But they speak to me as if they were speaking to their child and they give me the real deal and they don’t sugarcoat things for me. And I think that that has really been extremely helpful across all the different therapy blocks and all the different specialists. I remember I was working with a therapist at the time who used to see James for PT. And when it was spring or fall, she would like to work with James in the park. And I just remember her saying to me, you know, Dani, I don’t want you to freak out, but kitty needs glasses. 100% the kitty needs glasses. I’ve been to so many different apps. What do you mean? We did the Christmas Sergio. They just, I don’t want to sugarcoat things for you. The ball is here. He’s missing the ball. He’s not moving through space the proper way. Do you want to waste time? Do you want to waste another few months or do you want to go and do you want to get that? That was a huge jump for James when he got those glasses. There were like certain key moments, I would say over the last eight years where there were some brutal honesty and no beating around the bush. And sometimes it is harder to swallow in the moment, but it helps you act more aggressively.

ADAM:  One of the hardest parts of parenting a child with special needs is the emotional toll it can take. How did you manage the emotional side of advocating for James, especially when things got tough?

DANI:  It is a journey and it is a roller coaster and some days and some months are better than others, meaning children are humans, right? And room wasn’t built in a day. Progress isn’t made overnight. Sometimes you see time periods of huge jumps and gains. And that’s really motivating and empowering. And then sometimes you just are kind of not out of stands though, but they’re very minor jumps. And there’s a lot of frustration in those periods. So I would say things that I do is one, make time for yourself because if you are calm and you have your eyes at the light at the end of the tunnel and you’re able to constantly see that and keep that motivation and that empowerment, I think it helps you stay calm during those really frustrating times. I think talking about it is super helpful. So whether you need a venting session with your friends or talking to some of the providers and just letting out some of your frustration, those are probably the two key things that have helped me, trying to make positive light out of it. Sometimes you need a laugh. When I find myself in those moments, I do reach out to some members of his team and I say, look, you know, I don’t know if you’re seeing the same things. I’m seeing the same things. I’m so frustrated. You know, what do you think? What do you feel? And oftentimes they tell me, you might not be seeing it because they’re small, but they are big improvements. You know, look at what he’s doing in the classroom. You won’t believe what he did in math today or you won’t believe how he performed in this therapy session. And like these are the little pieces that make you okay, it’s okay. We’re going through one of these periods. We’re going to get to a jumping period, you know, sometimes you just need something a bit more aggressive when you’re young, you know, you need them to walk, right? And then you need them to talk. And then you need them to write and read, right? So like I’m kind of at that moment where we’re going to be looking towards medication, you know, I’m open to share. And that’s that next aggressive jump. And a doctor who I saw who was, you know, doing James’s most recent neuropsych evaluation said, you know, Dani, look, it’s like exactly like you said, right? You come to some very pivotal milestones, right? That you need to ensure that they hit. And I think that walking and talking were the first and now we’re up to reading and writing and kind of it’s a little bit more school based. There’s improvement, but it’s not quick improvement. And he said, it’s time to act a little bit more aggressively. We know there’s been an ADHD component there. And maybe this is the aggressive change we need to make to help James make those big gains.

ADAM:  So many parents struggle with this. The question of whether to put their children on medication, it sounds like you’re in it right now, figuring out, are you going to do it? What’s that going to look like speaking with the medical professionals? So this moment that you’re in right now, the uncertainty of it, trying to figure that out. Do you want to speak to that a little bit? I think it could be helpful for you.

DANI:  Yeah, absolutely. So, you know, medication is extremely prominent right now amongst kids. I’m from the school of I hate putting anything in the system that’s not necessary. I think most parents would probably say why give anything. But when you sit down with health care professionals, especially the psychiatrist, right, who essentially prescribed some sort of medication. And I’m happy to share that we had met with a really great psychologist out of Cornell. And she said, Dani, listen, it’s as if James is in Times Square 24 seven. Take a step back. Wow. Close your eyes. Imagine what that’s like, the noise, the lights, the distraction. How can he focus on anything? How can you see what he’s really capable of? It’s actually amazing that he’s able to compensate so well and get by in the way that he is. She also helped share a personal experience, which made me and my husband feel a lot better that she too has a son that’s on a similar medication. Our big concerns are mood swings and changes and appetite suppressants. From an appetite perspective, there are a lot of different medications that do different things and it’s very much dependent on what will work for your child. And I’ve been told that it takes a while to find that cocktail, that recipe, so to speak, that works. But there are a lot of ways where it won’t affect the appetite and where it won’t affect the mood, but you have to try because how can, how can I leave James in Times Square 24 seven? This kid should have a chance to have a quiet mind and to be able to focus. So again, I think sometimes you have to go against your nature and what you want. We all have visions of what we want for our children. We want them to go to these schools. We want them to be in this profession. We want them. Sometimes life doesn’t go according to plan and you need to adjust and you need to take yourself out of it and what you want and what you hope for and do what’s best for them. And the same way you need to be an advocate for them. If you’re seeking EI or CSE or CPSC or therapies, private, whatever it may be, you also need to take chances. You need to try everything and medication. It’s a trial. It can help and it cannot help. But if it doesn’t help, you’re back to square one. But if it does help, it could be game changing for your child. So we are going to move forward and we’re going to begin some trials on some medications. And look, we’re a bit nervous, but at the same time, we know tons of kids that are on variation of medications and it’s been a huge, huge, huge help for them. So that too is super motivational.

ADAM:  Yeah, you articulated that so beautifully. It’s a tough issue to navigate and I think the way you’re handling it is really inspiring.

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ADAM:  Dani, knowing what you know now, what advice would you give to parents who are newly facing these challenges?

DANI:  I would say ask a lot more questions. I would say fight harder, no matter what you’re doing or who you’re working with, ask more questions. Push back. Ask for more. Do more. I would like to think I was pretty aggressive even back then. But now looking back and knowing what I know, I know I could have been more aggressive with the city. I know I could have seen more services than I got more frequency. I should say, I think I could have asked a lot more questions when I used to go to different doctors, like when I went to a developmental pediatrician and I went to a neurologist. It was sort of just like, check it off the list, get it done. I mean, do you believe me? I had work. I had other kids. It’s natural. But asking the questions is also where you are able to make huge gains, right? Because sometimes it opens up different doors that were closed that you never would have thought of to explore. So I think that that would be my big thing is ask more questions and push back more.

ADAM:  You’re such an outgoing individual as a member of several boards and being prominent in your community. Has that helped you guide James in navigating social interactions with other children and

DANI:  families? Definitely. I’m so grateful for my community, both the community that I grew up in, that I sort of inherited through my husband and I continue to grow and gain as I move through life. I mentioned it earlier, for me and my husband, James goes to a specialized school and he has friends in school and that’s great and his school days are super long. But when it comes to weekends and it comes to vacations and it comes to summer, me and my husband are very big believers and also tapping into our communities that I rely on so much to sort of keep him with his peers, even if they’re more advanced. It’s sometimes I believe very beneficial for kids to be immersed with the different styles of learning, right? So even if it’s just recreational learning through sports and just through play and through speech, I think that has really helped James too. We find ways to do that and compensate, right? So I’m lucky I have a lot of friends and family friends who have kids around James’s age and they love him, right? Like a cousin or a brother. And he’s a great kid. He’s cool. He’s fun. What’s not to like? But he just might not play basketball at the same speed, but keeping him in those play-based environments with those kids, it’s helped him learn, you know, what he wants to do. It’s helped make him more motivated, I would say, whether it’s building a Lego tower, right? Or it’s kicking the soccer ball, whatever it is. Another thing my husband and I have done, which different professionals will say different things is we’ve kept James in a mainstream day camp. We’ve given him support. So we send him with, I don’t want to say see it because technically they’re not a see it. They’re a teacher and some sort of nursery program. And it’s really just to give James the extra support when he needs it. When you’re in a group of 22 boys, you know, sometimes things might get lost in the shuffle for him. So that support is there for comfort. And sometimes when he needs to sort of be pulled out or take a break, he has that. So again, that goes back to we push him to be in these environments so that he’s ultimately able to, but at the same time, we don’t want him to ever lose any sort of confidence. So there are these small ways where you can compensate for that even when it’s not, you know, on your terms and in your home. So camp and sending him with support is a nice sort of compromise.

ADAM:  Yeah, and it sounds like he’s always practicing that skill of how am I going to do this? How am I going to figure this out? And then being in those situations with typically developing peers gives him more opportunities to practice that skill.

DANI:  Absolutely. And I just want to add one thing. When a child is so used to going to therapies for James, he still thinks it’s play, right? He goes to speech. They play certain games to manipulate articulation or new vocabulary, but it’s also important for him to not have everything so spelt out for him to your point, right? He needs to learn how to figure things out. It’s also going to help him make games might not be your typical way of sitting in therapy and sitting in the classroom, but these are life skills. And sometimes you just have to be exposed to things that might be more challenging for you in order for you to grow. So I think it’s important to find that balance.

ADAM:  Well said. So Dani, you’ve worked with our law firm throughout this legal process. How has having legal support helped you in advocating for James? And what do you wish other parents knew about working with an attorney in this area?

DANI:  So I first of all want to say thank you so much to your firm and you. Your team is incredible. I was, I was of course going to seek legal advice when I was going into the specialized school world simply because I have tons of friends who are in this space. They highly recommended hiring an attorney and, you know, going through this process. Your firm has made this process insanely easy. I don’t know anything about law. It honestly stresses me out and overwhelms me, but your team has been so accessible. So there via email via via via phone call to answer any question or anything I might not understand. Everything is so spelt out step by step, walking you through what things are going to look like, all the different possibilities, what the timeline is going to be like, right? Because you have no idea when you’re walking into this and it has really made the process so seamless and such a pleasure.

ADAM:  Thank you. I appreciate that. I think that feels standard or easy now that when you first started going through the legal process was confusing or scary.

DANI:  Yes. I think in the beginning it is scary because you just don’t know what type of time is this going to take up for yourself writing these emails hopping on. IEP calls touring schools. I think once you go through the process one time, you’re kind of able, even though it’s not always going to be the same process, you kind of know what to expect. You know that you have a great team behind you that’s going to spell everything out for you and help you formulate these emails and these notes and just kind of really hold your hand through it. So I think like anything in life, like once you kind of go through the circle or the cycle once, it’s always a little bit easier. But obviously, you know, each year and each school year, it’s a new case, right? So you’re always kind of starting over, but with what’s going to happen, so to speak. So I think that that helps a lot.

ADAM:  And I know parents get very stressed out about the financial component, especially the first year when you have the uncertainty of how is this going to go? Am I going to be successful with my case? So what words do you have to parents who are feeling that financial stress about the process?

DANI:  Look, this process is expensive. There’s no way around it. But hiring an attorney is the best money that you will ever spend in this process because if your child needs to specialize school and specialized learning and you need to seek funding from the DOE, there is no reason to hold back and to not pursue this path and to seek this reimbursement.

ADAM:  You’ve been wonderful in this conversation. Is there anything more that you would like to share with our listeners?

DANI:  It has been a pleasure being here to anybody who’s listening. You’re not alone. It’s a tough space to be in. It’s not easy. I hear you and I feel you. But there’s a way through it and there’s a way through it with a smile on your face. There’s a way through it. Having fun doesn’t have to be so heavy and so serious all the time. And you know, you need to believe in your child at the end of the day. It’s not just loving your child. You need to believe that your child is going to come out of this in whatever way makes the most sense for your child. You need to feel that and you need to own that and then you need to implement that in every possible way.

ADAM:  Amazing. Thank you so much. It’s been great having this opportunity to sit down with you in person and have this conversation. You are a force and James and your other beautiful children are so lucky to have you. And I look forward to having a follow-up conversation in a year’s time when you launch your business. Reimagine. Get ready everybody. We’re going to re-imagine the way things are done in a special education space and I’m so looking forward to speaking with you further about it.

DANI:  Me too. Thank you so much for having me.

ADAM:  Thanks Dani.

ANNOUNCER:  This podcast provides general information which is not intended to and does not constitute legal advice. You should not rely on this information for any purpose. For legal counsel you should consult with an attorney to discuss your specific circumstances. You’re listening to this podcast does not create an attorney-client relationship between you and the law offices of Adam Dayan, PLLC. No attorney-client relationship is established unless a retainer agreement has been executed between the clients and the law offices of Adam Dayan. This podcast may constitute attorney advertising. If our results do not guarantee a similar outcome. Any guests featured or resources mentioned on this podcast are for information purposes and are not endorsed by the Law Offices of Adam Dayan, PLLC.