Friday, July 12, 2024

97. Overcoming Guilt as a Single Mom of a Special Needs Child

Forget "toughen up" - This mom reveals the secret weapon for raising a child with special needs (and it's not what you think.)
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Single Mom of a Special Needs Child

Show Notes:

Forget “toughen up” – This mom reveals the secret weapon for raising a child with special needs (and it’s not what you think.)

Danielle, a single mom of a special needs child, shares her experiences raising her daughter with epilepsy and auditory processing difficulties. The interview highlights the challenges Danielle faces navigating the healthcare system, advocating for her daughter’s needs at school, and managing the emotional toll.

Danielle describes struggling to find qualified doctors who listen to her concerns and frustration with insurance limitations. She emphasizes the importance of advocating for your child and highlights the need for parents to be their child’s strongest voice.

Despite the challenges, Danielle finds strength through self-care. This includes small breaks like watching a movie or taking an extra hour at the store without her daughter. She also emphasizes the importance of finding a support system, whether through online communities or support groups.

Danielle has transitioned into a career as a life coach, focusing on women facing infertility, miscarriage, and single moms by choice. She offers coaching services to help parents navigate the challenges of raising a child with special needs, including advocating for their child and dealing with guilt.

The interview concludes with Danielle encouraging parents to trust their instincts and fight for their child’s needs. She reminds them they’re not alone and there are resources available to help them on this journey.

👉Connect with Danielle:

  • 📝Email: fslcpodcast[@]gmail.com

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/


 

Danielle is a certified life coach that wear many hats. She enjoys helping those in need as they navigate difficult seasons in life as she brings a nurturing and understanding approach to a variety of situations. She utilizes wealth of knowledge and experience empower clients to navigate the emotional, mental, and physical complexities that they face. When she is not helping people on their journey of healing she is going on adventures with her 6-year-old daughter that has special needs.

 


Episode #97: Overcoming Guilt as a Single Mom of a Special Needs Child

Forget “toughen up” – This mom reveals the secret weapon for raising a child with special needs (and it’s not what you think.)

(Recorded April 8, 2024)

Full Transcript of Interview:

Danielle: Yeah, that that’s my hope for so many families that they just have Children that will outgrow it. I’ve been told by one because we’ve had multiple pediatric neurologists, you know, one said oh, she might outgrow it. And then the next one said, no, she’s not going to outgrow this. This is for the rest of her life.

And I’m just like, it’s not what I want to hear. It’s conflicting. And then the other one is just like, oh just stay on this medicine and wait two years and then come back and see me. So, you know, what do you do?

Tonya: So, So wait two years? So there’s no checkups during that time or changes?

No, I’ve had to fight. We moved to another state and just trying to find a pediatric neurologist, which was a journey in itself, end up finding one and very thorough.

We had two hour-long appointments. And, you know, I told him, I’m like, okay, my daughter has this and he’s like, oh, no, that’s not this. And he was just very kind of condescending because I asked him a question. He’s like, oh, is that what you wanted to hear? And I’m like, well as a doctor. That’s not what you say to a parent that is just trying to figure out what to do next.

You know, I’m like, you don’t say, is that what you wanted to hear? It’s kind of, you know, it’s, it’s. It’s upsetting, but at least he was thorough and left very thorough notes. So, you know, end up getting somewhere, my daughter being on the medication and then he ended up retiring and then not really taking my calls.

As my daughter had a medical emergency recently and we were in the emergency room and I’m like, this is kind of life threatening. It’s, you know, safety or risk concerns. And his office wouldn’t call me back. So then end up finding a new pediatric neurologist, but in this I have to call their office six to eight times just to get through.

So like when you schedule an appointment, it just sends you to a voicemail and no one calls back. And so I’m just at this kind of point of frustration. We don’t have a, I don’t have a lot of options, you know, my area, there’s really no pediatric neurologist. So the new person is good. And, you know, determining that the medicine my daughter was on for a couple of months, she was having adverse effects.

They’re causing hallucinations and, you know, and in that. Do the hallucinations not only now have a pediatric neurology, a pediatric neurologist, a child psychiatrist that wanted to put her on antipsychotics. And I’m like, she’s six years old. I’m not putting my six year old on antipsychotics and yet still trying to figure out what’s reality and what’s not reality, you know, and trying to tell her, okay, when you hear this, when you see this, this isn’t real.

And this is what we can do trying to figure out how to tell the school. Because if you say, Hey, my daughter sees this. Um, they kind of look at you, of course, but having to figure that out. And then her being six and just trying to make sense of it. And of course it’s scary for her. It’s scary for me because when it happened, it was like midnight when we had her first episode and rushed her to the emergency room and they said, we don’t really know what to do.

And then they’re like, Oh, we’ll just Google, um, you know, the specialist. And I’m like, that doesn’t help me at three in the morning. And so I’m just trying to figure out what do I want to do moving forward in the midst of all of it? So that’s me in a nutshell.

A lot of our families that are listening are facing that same, that same series of questions.

You know, you, you’re starting out trying to find who is the doctor. And in your case, you’ve had to, to find multiple doctors. Unfortunately, that’s that. And that’s such a specialty area. There aren’t going to be a lot of choices in each, each region as well. But then even when you find the doctor, what questions do you need to be asking?

You know, the, the medicine is one question, but then the side effects from the medicine, and I’m with you adding more medicine to medicine because of the medicine for a six year old, especially that’s just, that’s a lot. Are there dietary changes that could be there that, that might do what the medicine’s doing?

I don’t, I don’t know these answers. I’m not, those that are listening. I’m not telling you what to do. This is just, I’m just asking questions because these are what the questions are that we keep asking and having to find out, you know, how can we go? Um, I would say if you’re listening and you’re a parent of an older child and you have any advice for us, leave it in the comments, send us an email.

We will pass this on for others to be able to see as well. The stage that you’re in, you’re, you’re still seeking. But we have parents that are going to be younger than you that will be able to benefit from this conversation too, to know that, all right, so if I have to change doctors, it’s okay. That’s something I didn’t know.

I don’t know about you, but I thought that, you know, you have a doctor, you have to stay with that doctor. I had to learn that it was okay to question them and to, I guess you call it fire them and go on to another doctor. If you’re not, if you’re not connecting right, or if you don’t feel like it’s the right care for your child.

Exactly. And as you mentioned to having to sometimes pay out of pocket. So my daughter has insurance, but the insurance has been really difficult. They’re referring her to. For when they’re referring her to like specialists that don’t see children. So it doesn’t help me when you give me a referral and this is my third time and you’re not, not helping me, you know?

So in that now I’m going to do, I’m doing things out of pocket. So knowing like, I know that my daughter has trouble with auditory processing. No one seems to really understand or believe me, but it’s just comprehending things. I know the medicine already impacts her memory. So I know that, but it’s just kind of comprehending things, you know, dealing with like I said dyscalculia with numbers, um, just spelling. I said, let’s spell moon. And she says, M L L N there is no L in moon, but she hears it. And I said, well, let’s spell book B G G and then K there’s no G in book. So something is not, you know, working. And so I actually paid a hundred dollars out of pocket to take her to an audiologist and audiologist.

I’m like, this person’s supposed to help. And she just gave her a hearing test. She’s like, Oh, hearing is good. Well, that’s, I understand her. She can hear. But it’s something with the processing. So now I’m actually in the process of traveling out of state to find a pediatric audiologist that I found that just works with children.

You know, it’s, it’s a, it’s where family is, but having to literally leave the state, probably pay a couple hundred dollars out of pocket just to get some more answers.

Right. And we, we’ve traveled, we haven’t traveled that far, but we have traveled at times and, and my daughter still travels to see, um, her low vision specialist because.

It’s someone that she connects with well. She knows that she trusts what he prescribes for her and she knows that he hears her. And, um, and so that, but it, it is near family. So at least we can combine family visits whenever we go, but it’s unfortunate that we, I mean, and I even live near a big city, you know, we have families who are in remote areas.

They’re, they don’t have an option. They have to, to pack up and go to have, these, these visits to find out some of the answers there. The, um, so the first question I was going to ask was how, how was her hearing? So she’s hearing all the ranges of the sound.

Yes, she’s hearing, but it’s something about comprehending.

And so I’ve seen it when I’ve had a meeting at school, so that was kind of, um, guys back it up a little bit. So, um, with my daughter, I’ve homeschooled her since kindergarten, and I just put her in school. This, Kind of 2nd half of 1st grade, which was a tough decision. So far, it’s been all right. We’re taking it 1 day at a time, but have set up a meeting.

So, about a month ago, I had a meeting with the principal, the school nurse, the school staff. counselor and my daughter’s teacher and trying to explain, you know, these are the things I’m seeing, you know, when she brings home her work that she’s doing, she just circles every answer. And I say, well, someone correcting you so you know what’s right and what’s wrong.

And she just circles everything that doesn’t really, you know, show then that she’s been doing that since preschool where she just circle everything. And so just showing, I’m like, I can tell there’s something with comprehension as I’ve homeschooled her and just asking her questions. Some things, you know, she’s smart as an elephant, right?

And she gets it, but other things, you know, it’s just that she’s still struggling with. So, you know, realistically with my daughter beyond the epilepsy, you know, knowing that she still puts things in her mouth. So I still have to watch her, um, just other, you know, just other, the, she has a vocal tick, um, and each month we kind of rotate between ticks.

So it was a vocal tick. Um, then it was cracking her knuckles. Now it’s her eye twitching, um, which could be a seizure or the motor tick. And we just kind of rotate between them. Yeah. So it’s like in this, um, kind of going back to your question, you know, it’s like, we’re trying to, for me, I’m just trying to tackle everything at once, but it’s hard between, you know, having a dermatologist, a pediatric urologist, a pediatric neurologist, um, you know, child psychiatrist, regular counseling, and then her getting services, trying to do my best you know, at school and then still trying to find a pediatrician that left the practice and then the pediatric, you know, just like just everyone and trying to coordinate these things and get everybody on the same page.

And coordinating it. You’ve got the working with insurance with all of them and then even just copays alone.

And, and then out of pocket on top of that, with some of that, I don’t know how you do it. That’s, that’s a lot for, for one family to, to be juggling and, but it does, it does emphasize why we tell parents all the time, you are the one that has to be there to advocate for your child. Because. You, you have all these doctors and they may, they may retire.

They may, you may relocate, but you’re the only one as the parent who knows what the school’s saying. You know what the doctors are saying, you know what you’re seeing at home. No one else sees all of those pieces and you’re, you’re there for all those appointments. You’re there to kind of help tie it together.

So we, um, so I kind of want to unpack a little bit of this. So let’s go back to IEP process. Let’s talk about that just a little bit. Okay. When you, how did you start it? Did you, did you go into the school and request that whenever you transferred her into the public school or did she go first? And then did they come to you and ask, can we, can we start this process?

Good question. So I have been fighting since preschool. So my daughter went to, um, in preschool, she went to a private Christian preschool and the teacher had brought up some things just saying that my daughter was doing things that just were not what you’d expect. So like laying on face down on the floor or just staring.

Or, um, just all of a sudden start talking while the teacher is talking, just like having these conversations, things that maybe you wouldn’t expect a child to do. And she’s like, I feel like maybe there’s a delay. And I said, well, can you do testing? And they said, oh, we can’t do anything. So they kind of wiped their hands clean of it.

And then that’s when I did a charter school, but it was virtual school in a way. And I said, can you guys do testing? And they started the process within like a year and a half later, nothing became of it. So then that’s why I put on public school. Like, I want to get her tested. And so in that I try to make it clear ahead of time.

This is what my daughter’s dealing with. Thankfully with good school district, a smaller school. So with my daughter’s school, there’s barely about like, 300 kids. Her classroom only has 10 to 13 kids, which is unheard of. Yeah, very unheard of, but everyone’s really nice, very cooperative, but I’ve made my presence known.

So in that it has been hard to work, you know, when I’m getting a call at least once a week, you know, for my daughter, like, for example, they did, and they weren’t thinking about it, but they said, Oh, we did hearing testing and vision testing. And they didn’t let me know ahead of time, knowing that my daughter freaks out for things like that.

And I’m like, okay, I’m coming to pick her up because that’s just the end of her day. I’m like, Oh, guys, you have to let me know these things. Or, um, you know, there’s one time I felt so bad where I didn’t catch it and they didn’t catch it. She had a seizure in the classroom. And so she put her head down on the table and the other students were trying to wake her up and they didn’t like, she didn’t wake up right away.

And I didn’t know until after everything had happened. So, you know, in this kind of with the school, I’ve had to make my presence known. And so I’ve been in the office and I told them, I’m like, I’ve been in the office so much. I should just put a desk in between because I dealt with the school nurse. And then.

Um, yeah, trying to get them to give her her emergency like medicine since she has like two or three different medicines just at the school and trying to explain this and they’ve actually been really helpful. So they’ve done even referrals to the doctor’s office and been in communication with my daughter’s like specialist, which I appreciate.

And they’ve helped me get referrals that I couldn’t get, which, you know, I’m like, thank you. Just any help that I can get, I’ll take. But at this point, like, I’ve had that 1 meeting, um, you know, the principal, the school nurse, the counselor and the teacher, and then we have another meeting scheduled for the middle of May, but I’m still trying to like, oh, well, you don’t need a 504 plan because we’re doing accommodations.

I’m like, I need something. So, right now, my next steps to call the school district. to see if they can. I just I want her to just get tested for ADHD. And someone said, call the school district have to do it. And so my case, you know, school is done early June, so time is running out little by little. And so right now, I’m just just trying to get my foot in the door.

But right now, so I’m at that point where I’m still trying to knock on the door and I feel like someone opens the door, but it keeps getting closed in my face. I’m like, no, I need that door to be open so we can get someplace. So, you know, we’re doing accommodations. I appreciate the meeting, but you know, still my fear of like, okay, we have school testing coming up in May.

You know, the last my daughter had testing, she fell asleep. So I’m like, and she cried through it and she didn’t do well on it. So knowing that she’s not able to make it through that. So what is the plan? You know, that she just had her first field trip. Which she survived. It was rough, but she, you know, I let her go because at first I was afraid and the school nurse went, you know, but at this point I still feel like I have a long ways to go.

Have you talked with her much about her diagnoses and just, just school? Cause you know, cause you’ve gone from homeschooling now into the public school. So that was a shift to begin with and you had the other, the charter in between. So, so moving between the two, have, have you talked with her much about this yet?

And how, how would you advise to other parents? How much do you share and how do you share that information with your child?

Good question. So I think you really have to gauge like what your child understands and how much they need to know. With something like epilepsy, I’m really trying to, um, I don’t want her to be scared, but I want to be honest too.

I’m trying to get her to be more independent, like having to take her medicine. So I won’t always prompt her to do it. I’ll put it in front of her and she’ll take it. And so I’m trying to help her with that. I tell her, I’m like, okay, what you struggle with is you have too much lightning in your brain. And so that’s how I kind of explain it to her.

And, you know, parents that are listening. Yeah. Something that’s not as scary. Thankfully, she hasn’t had like tonic clonic seizures, but she’s had absent seizures and tried in the, you know, her doctor recently said, well, how many different types of seizures? Seizures does she have? And I’m like, I don’t know.

I’ve noticed at least maybe two, you know, and I get that it can be scary. And for my daughter, um, sometimes for her, her seizures like a popping in the back of her head. So she’ll cry because she’s like something popped in the back of my head. Um, doctors have said that’s a seizure. Others said, no, that’s not a seizure.

And I’m like, well, it’s something that’s making her cry. So in that it’s there and she knows and there’s nothing we can do to prevent it. And after it happens, um, I can rub the back of her head, but there’s nothing I can really give to her. You know, so that’s, that’s real. And she goes through it. Um, I told her, you know, at school that we don’t always have to tell everyone everything.

Um, I am cautious, you know, sometimes like when she goes to after school programs, summer camps. Um, you know, at church and the children’s ministry, other things, you know, kind of cautious about what we kind of tell people and what we don’t because I don’t want people freaking out. Um, even with family, you know, like I had, um, you know, family member like, Oh, we’ll just leave her with family and we’ll go to the movies.

And I’m like, no, I’m not going to just leave her with family because they don’t know the signs of symptoms, you know, and I get just, Oh, just go to the movies. I’m like, no, I know that at night. That’s when she has seizures. Um, I really work really, really hard to have her not get overly tired because it’s one of her triggers.

Um, certain sounds, you know, are difficult for her. So I don’t know, like, for example, just flushing the toilet can be a lot for her, so she has her headphones, you know, and sometimes not knowing, you know, okay, I just have my purse, you know, so just knowing what will be too loud for her, what will be upsetting for her, what’s a trigger, what’s not, you know, different things.

So, You know, in that, um, just speaking to parents to, don’t be afraid to get your children counseling. That was one thing that was a struggle because due to her age, like it was hard finding a counselor, like, oh, she’s too young. And so, you know, I was just trying to find someone, um, even like it took, I called over 14 people when my daughter was like almost four and a half, five, about almost five, right before she turned five and no one would see her.

And I’m like, well, I want someone to just talk her through this and process everything with her. And I did find a counselor through the charter school, but they’re like, oh, she needs a long term counselor. And I’m like, yeah, well, that’s the issue. I can’t find a long term counselor. Now I found a counselor and, um, it was good, but then their schedule didn’t match up.

So then they put us on the waiting list for three months. And then we found a new counselor. She was super nice, had one session, and then she left the practice. So now we’re back at square one. And sometimes now the counselors are like, oh, we only do virtual. And she just doesn’t respond well to virtual, you know, sessions.

So, um, she goes to counseling in school, but it’s different. She’s like, well, we just play games. And she’s like, I don’t want to talk in front of the other kids. And I get it because you’re six and you don’t want everyone knowing you’re business in it. So now it’s that whole thing to find a counselor that has a schedule that matches up that’s a good fit that just works out in the midst of us trying to move and figure out everything. So, you know, but don’t be afraid to just have a counselor just kind of step in or someone that’s not you as the parent talk to your child, because sometimes they open up more. Like for me, my daughter has this whole thing of, Oh mom, is this normal?

And I’m like, I don’t like that word normal because how do you measure normal? But in that to say, okay, um, you having hallucinations, I don’t want to say it’s not normal. It’s it’s technically it’s not, but in that just trying to leave space and say, okay, you know, what did you hear today? Or what did you see today?

You know, it’s like, well, I saw the Easter bunny at the airport. Well, I looked, I didn’t see the Easter Bunny at the airport. She’s like, well, I was on the school bus and another kid was biting another kid and he was dressed like a piñata. Likely that wasn’t real, but we just have to talk through it, not to alarm her, but saying likely that might’ve been a hallucination.

And I said, well, did your friends see it or how did your friends respond? And she’s like, I got really scared. So just giving her ways to cope because I can’t be with her when she’s on the bus. I can’t always be with her all the time. Okay. But in this, I can’t really stop what she’s seeing, but in it, we’re just tracking it and then say, okay, this does happen.

This is what you do and realize you don’t have to give into what you hear or what you’re seeing. But at the same time, it’s scary as a parent, because it’s like, well, my hands are tied, but I’m just trying to kind of prepare her for it, help her to be independent, but then still try and figure out what’s going on.

I’ve. I’ve seen a lot in like on social media and all of parents who have, they’ll start their day with like a different mantra with their kids, things like that. You know, you’ll see kids on Instagram doing, I am strong, I am brave. Do you do anything with that, like that with your daughter? Have you found anything like that that would help her?

Good question. So I’ve had to tell myself just personally that I’m capable and I’ve had to keep reminding myself of that because sometimes it’s just, it’s overwhelming. Sometimes like the doctor’s office will call and like, well, when do you want to schedule? And I’m just like, I can’t. Schedule one more specialist right now.

That’s going to have to go the bottom of the list, you know, and so with my daughter just telling her that, you know, she’s still smart, even though she’s not like the other students. So it’s been interesting. Like, um, with my daughter’s class, she has a, um, the teacher has her paired up with another kid that does like really well, which is good.

But then at the same time, I feel like it’s easy to compare yourself because she has someone that’s her same age who’s there helping her with her work. So it has its benefits. But to me, at the same time, it has its drawbacks because you’re thinking, she’s like, well, I’m not smart like her. That’s what she’ll tell me. And she’s like, well, mom, I, um, due to her memory, she had, she was doing something and she forgot where it was and all the kids laughed at her.

And then by the time I got to, you know, my daughter and she’s talking about the story, then she was crying and she’s like, oh, because I couldn’t remember and because I’m not smart and I’m not this. And I had to tell her different kids are better. are better at different things and other things. And, you know, it’s hard to tell her, okay, because you have your seizures and your medicine, this all impacts your memory.

And sometimes you’re just forgetful and clumsy too so that just kind of, you know, kind of rolls into my daughter gets hurt a lot. So in that, you know, it’s just like having to remind her, you’re okay, you’re special, you know, you’re one of a kind. I keep telling her, I’m like, you’re going to change the world someday and different things.

I keep reminding her of that. Um, but it’s hard when, you know, of course she sees her other friends, she’s like, well, why does my friend get to do this and why can’t I do sleepovers and why do they remember this and why can they dress like this?

When you’re going to find too, that you’re at the stage that it’s still hard because there are those huge differences.

But she’s going to find her tools with that support that she’s going to get in the resource room and the specialists are going to be working with her at school. They’re going to be teaching her some of her skills that she needs. She may not do the mental math as quickly, but she’s going to learn how to do a tally on the page.

She’s going to learn how to do something that’s going to be her way of keeping track of those numbers so that she can do her version of mental math. And she may end up being faster than the rest of them in three years. Right now though, she’s noticing that, that, that difference. And I’m, I’m with you whenever they have peer mentors within the class, when it’s the same age, it really is hard.

And if they get kids that are a year or two older, it doesn’t seem the same. Because they’re looking up to them, they’re supposed to be smarter than them already, you know, so, so it kind of helps with that. So, um, so it may be something to kind of put in the back of your mind, a conversation may have to happen sometime asking.

Can we have a teacher’s aide in there that’s helping her instead of another child so that she’s not feeling that way? The, um, I think, and I’m just, I haven’t met your daughter, but I’m thinking she just needs to be poured into, to know how beautiful she is, how smart she is. How, and, Special in a good way, not special as in you’re different special, if you can find the way to make sure that she’s hearing that message, which is what what I think you were saying that, that she, she was created as a special person.

Um, and she has a lot to offer because she has friends. In spite of all these things she’s having to face right now, she’s making friends at school. And that’s, that’s nice to hear.

Yes. That’s true. And thank you so much for just your kind words. She’s my social butterfly.

I’m tired listening to how many different specialists you’re already working with.

And then on top of how many you’ve had to switch in such a short time, you’re a single mom. When do you work? You’re running all over the place right now. How are you balancing um, work and, and I mean, I know she’s in public school now, but you can’t totally just let go and walk away. You’ve got to be on call all the time with that too. And getting those relay phone calls with all the doctors and therapists and everything. How are you balancing all that?

Yes, so as of last year, it gives my head like 2 or 3 jobs at once and then started something my own. So I was a notary and then working multiple jobs and that it was just too much. And then, um, doing something from home and then that became a little too much too, um, as of recently.

So I’m a registered behavior technician. So I’m working with kiddos that have special needs and doing that part time. But as you know, that’s still a lot of times doesn’t pay the bills like it’s for as much work that we do. Like I love the kids and we feed them. We’re potty training them, trying to keep them from eloping and keeping them alive and teaching them all these things.

And it’s rewarding, but at the same time trying to check my phone while trying to check on them, make sure they’re not choking and taking them to the restroom and potty accidents and other things. So. So honestly, I’m taking it one day at a time. I don’t get child support. I don’t get alimony. So for those are like, oh, I’m sure she gets something on the side.

I have, um, in the process of starting something else for myself. So, um, becoming a life coach, um, which has been an exciting journey. Um, it has not I’m still in that 1st kind of year. So don’t have that income coming in, but little by little, I’m like, I know that it’s going to come. So it’s providing with that flexibility.

But right now, just having to kind of work part time while I can and then I do inspections. To make sure things and I’ve worked with the company doing field inspections. So that’s kind of nice because it’s like, okay, I do an inspection for an hour and it helps out. But it has been hard trying to find something that’s work from home, but that pays, like, I’ve done things like in the field, but that’s just as hard trying to kind of get back and forth between my daughter’s school.

Like, as I stated, like, for me, a lot of time, I get a call at least once a week. You know that something’s going on or they say, Oh, you didn’t sign this paper or, Oh, the school nurse calls. And she’s like, Oh, I need this. And then they’re like, Oh, you missed a signature. And then trying to email my daughter’s teacher and say, okay, where’s her homework?

And she’s lost 5 jackets and all these different things. And, you know, they pick her up at one gate, and my daughter’s at the back gate and she’s like, you forgot about me. And she’s freaking out, you know, all these different things. I’m like, okay, can she wear her sensory necklace in the class versus not wearing it? And is she still, because my daughter said she puts things in her mouth, she’ll eat holes through her t shirt.

So it’s all these different things, you know, that we’re, we’re dealing with at the moment. I’m like, okay, make sure she’s not putting things in her mouth, you know, in the classroom because she does it at home. So I’m kind of going back to your question. I still work because I have to eat. But at this time, um, that’s kind of the challenge I’m facing is to move close family to really have more support.

But that means moving out of state, but then also being a caregiver to family. So going from taking care of just my daughter, where I am to now taking care of my daughter, my mom and my grandmother, which, you know, would be interesting. That’s just me once again, taking care of three people, but then I get family support or moving to another state that’s cheaper, but having no support, which I’ve done before and I made it work or staying where I am and being close to my dad’s father. Um, but in this, um, he’s not really kind of believing it. So that’s a kind of another piece is that it’s 1 thing when you’re co parenting or you’re co parenting with someone that doesn’t like, believe that your child has something going on or really doesn’t see it.

See it because he’s not the one, you know, at the doctor’s appointments and speaking to the specialist, it’s just me. So at this time he is like, well she doesn’t need medicine, we just need to love her more. And I’m like, no, she can die from this. You know? So for those that are going through it, I get that it’s hard when you’re just trying to really convince you, it’s hard enough to convince school what’s going on. But then I have to convince family too is just as hard.

But a lot of times I know the extended family are hard, but, um, but you’re talking about more your immediate family that’s even. That’s even more that you’re having to carry with that.

Exactly. They’re just like, Oh, well, she, you know, the whole thing, they say, Oh, if the child doesn’t eat, you know, they’ll just, I said, I’ll give my daughter something to eat.

Like, Oh, she doesn’t eat. Um, she’ll eat it eventually. And I’m like, no, you don’t get a lot of times the kids that have special needs. If you, you know, if you put something in front of them, they just won’t eat. And then we just had this whole other slew of issues, you know? So it’s just like. Yeah. Exactly.

Kind of get people to really understand they’re like, Oh no, just leave it there. Show you to eventually like, no, that plate’s been here for two days. You know, so.

You mentioned that you’re, um, that you’re starting to work as a certified life coach.

Yes.

Do you have any specific advice or tools that you found helpful that you want to pass on about raising children with special needs?

Yes. Um, a lot of different things. So just really being kind to yourself. Um, so my niche is a little bit different. So I work with, um, women that are struggling due to infertility, miscarriage and also single moms by choice. So moms that are deciding to adopt and foster. And so for me, um, I’ve been in all three seasons when I speak to women, especially starting their family on their own, realizing that things are not going to always turn out as they want to.

As you plan them to, but realize that you can do this because I know a lot of women that are going into it or that are single parents. And they’re just like, Oh, how am I going to do this? When I do about childcare, I don’t have support. And I’m like, you know what? You’re going to find a way to make it work.

You’re going to find community. You’re going to find like for me, support groups, even Facebook groups just help. Like sometimes I don’t even respond, but I’ll just like heart emoji or that care emoji or whatever it is, you know, just to have that connection. But it’s, you know, other people where, you know, they have teenagers that have special needs.

And I’m like, that’s going to be me someday, you know, and saying, okay, their child can’t get a job or they can’t drive or, you know, sometimes up at three in the morning and say, okay, are people going to be kind to my daughter? And many parents I’m sure that’s, you know, that’s what they’re going through. For me I watch my daughter sleep too, just to make sure she’s okay. But just thinking, okay, there are those days. How am I going to do this? How are we going to make this work? Okay. But for parents that are going through it, just realize that when you feel like all your strength has been depleted, like somehow this reservoir of just kind of strength will come and it’ll find you and you’re like, well, how am I going to keep going?

But it’s that whole thing of like, I’m capable. I’m enough. You know, it’s a lot right now. Sometimes you do have to step back. Sometimes people are not going to get it. You know, sometimes your job’s not going to understand. As I say, sometimes family’s not going to understand. Sometimes things are going to be tight financially.

Sometimes you’re just going to have those you know, moments where you just have to say, okay, just breathe. A lot of times I just have to just breathe. And.

Tell my listeners how they can, can work with you if they want to, to connect with you.

Yes, I’m always here. So for me, it’s something I’m passionate about just encouraging others and loving on others.

And just if I give free hugs all day, I’m like, that would be just great. For me, I just know how it is when you just feel isolated. The name of my business is Fresh Start Life Coaching, LLC. And my email is fslcpodcasts at gmail. com. I do offer initial consultation, but even beyond that, if you just want to talk or just get guidance on like, You know, saying, okay, I’m thinking about putting my child in school.

I’m thinking about homeschooling my child. What do I do next? You know, I can speak to both of those. You say, you know, how do I contact the specialist or how do I get my voice heard? You know, I can help you with that. If you’re just trying to come up with a list of questions, you know, I can assist with that.

If you’re dealing with just coparenting, you know, that’s a whole nother thing or just, you know, If you’re in something that’s toxic, I’ve told people, you know, don’t stay in a toxic relationship or toxic marriage just because you’re like, well, I don’t know how I’m going to raise a child on my own. And, you know, different things like that, as you know, like, um, rates of child abuse and even domestic violence are high, you know, for families that do have, you know, at least one child that has special needs. It’s, it’s makes sense in the midst of all the stress and the wear and tear. So, you know, I’m here to listen.

We’ll put your contacts in the show notes too, so that if anyone wants to reach out, they can. They can find you. And, um, so that that’s probably the best way to, to do it there. Um, so switching gears a little bit here.

I’ve been this season, I’ve been having my guests repeat a statement that I read and then finish it. As a way of giving advice to our listeners, and we’ll use this listeners. You may, you may see these show up as, as different clips here and there on social media, but um, but it’s, to me, it’s kind of a fun way to kind of wrap up everything and, and pass on some final words of advice.

So the first one, the biggest challenge I faced in raising my daughter with special needs is…

okay, yes, the biggest challenge I face rating raising my daughter with special needs is just that guilt and feel like I’m not enough. So those 2. so really having to release the guilt as I said, you know, my daughter was at school and had a seizure in the classroom and saying, I should have been there.

I’m a bad mom. I should have stuck with homeschooling and just feeling like I’m not enough. And trying to be, you know, in all these places saying, okay, why, you know, sometimes when it comes to specialist appointments, I can only do so many appointments at once. And sometimes I’m like, well, I should have been able to schedule five specialist appointments.

Why, why not? You know, but just saying, no, she can only handle so much. I can only handle so much, but you know, in that it’s just really having to be kind to myself, releasing the guilt and just realizing that I’m doing the best that I can with what I’ve been handed. That’s it.

All right, let’s try number two here.

So we have one thing I wish I knew starting out as a single parent of a child with special needs is.

One thing that I wish I knew is that, um, the importance of just standing up for my daughter, um, like advocating for her. Like a lot of times I just kind of thought, oh, okay, well the doctor’s going to do the referral so I don’t have to follow up.

Oh, the school’s going to just, you know, send her for testing and I don’t have to stay on them. Oh, family’s just going to understand. They’re going to get that I can’t do this or I have to say no to this. And yet in all of these arenas, realizing that a lot of times people just kind of do the bare minimum, it feels like these days.

And so. So in this one thing that I wish I knew was just advocating for her earlier.

You’re, you’re doing a good job with that. One thing that, um, I didn’t cause it was early in my walk. I didn’t understand back when my daughter was in preschool, but I would pick her up every day from preschool and kindergarten and have her screaming to the car because she was utterly exhausted.

She had used every ounce of her energy just to visually keep track of where her teacher was, where her friends were, where the toy was, and sorting through all those bright colors in the room. And so you’ve already learned how to use those words to pinpoint, not, can I please have this, but this is what my daughter needs.

This is why she needs it. This is what we need to do. It’s, it’s, it’s non negotiable. You’ve already put it out there. I didn’t have that skill, so I commend you on that. Um, but parents listening, Listen to that pattern. It’s not going to be the same for your child, but if you can identify the what, the why, and what the solution is, you’ve already won the battle because now you’ve been able to lay it out so that you know that you’re, you’re able to advocate for your child very effectively if you can state it that way, because now you’re not trying to ask permission for something.

You’re coming in a point of strength and saying, you know, I’m, I’m, I’m here. I’m helping my child. This is what we need to do. And this is why, and not many are going to argue with you on that one. So, so that very, very, very, very good example there of how to do it. And I, I appreciate the way, the way that, that, that you worded that.

Okay. So this is the longest one. So the most important thing I’ve learned about myself through this journey of raising a child with special needs is.

For me, it would just be this inner strength, like just realizing, I know people say it’s cliche, but they say, Oh, you don’t know how strong you are until you have to like, go through something.

For me, I’m just like, learn the strength that I didn’t have a choice, either be strong or not. Like I’ve got to be strong for her. Cause I’m like all she has. So.

All right. So we have two more of these are shorter. Now my hope for other parents raising children with special needs is.

My hope is that you still, um, are able to just show them that love and be that kindness that likely that they might not always see in the world.

So that’s just my, my hope that you’re still able to love them and show them that they have value.

All right. So final one, this is the easy one for you, I think. Self care for me as a single parent looks like

self care for me, sometimes it’s just taking a nap. Sometimes they’re not intentional. I’m on the couch. I’m like, Oh, no, I fell asleep. But in that, um, it’s just like, uh, with my daughter, she goes to school. And so sometimes she’s at the after school program and I was a little leery. Sometimes it has its ups and its downs, but sometimes she’s like, mom, I want to stay later. And I was trying to pick her up right after school, but I’m like, what’s there.

So why not use it? So sometimes self care is letting her stay maybe an hour and picking her up and maybe just watching a movie, maybe just eating a meal. Like, I went to Walmart today and just walked around and I’m like, okay, it was nice to not have someone ask me for a toy. Self care sometimes it’s like, okay, letting her dad take her an extra day.

Sometimes like, I feel a little guilty, but it’s kind of nice because then I can get things done or work a little, um, you work extra or plan something fun for us or different things like that. So, you know, I try not to go overboard, but sometimes it’s just giving myself that hour to just eat a meal and sit down, you know, or just like, maybe not scheduling appointments for her for a week and say, we can schedule them next week or, you know, even like recently I was sick while my daughter was sick and I took myself to urgent care and I said, Danielle, you took care of yourself and I’m like, I was kind of like dying in it, you know, and everything, but, um, I’m like, okay, why is it you can take your daughter to her five appointments, but you can’t even take yourself to urgent for what you feel bad about.

I’m really having to sit down and do that. Maybe it’s just getting my hair done for an hour. You know, I don’t do anything expensive once again, but sometimes it’s just little things like that, or just going to the bookstore and walking around.

Well, thank you for spending the time today to go through this. You, um, you’ve given us some really good information, a lot to think about. And I know parents that are listening at different stages are going to, to pull information from this. So thank, thank you so much for being here today.

Yes. Thank you for just having me and for letting me be here. And just thank you for those that are listening.

I know you can be doing lots of other things, but I just hope that something that was said just encourages you, gives you that strength. And lets you know that it’s not all in your head because sometimes people just say, Oh, you’re just, you know, your kid’s just sensitive or they’re just growing up or they need to toughen up and you’re like, no, there’s something seriously wrong, genuinely wrong.

So just know that, that it’s not just all in your head. You know, you’re the parent and you notice the little things. So, you know, be in tune with that and listen to it and act upon it.

Tonya Wollum

Tonya

Tonya Wollum is a disability advocate and host of the Water Prairie Chronicles podcast which connects special needs parents with resources to help them navigate parenting a child with a disability. She is the mother of 2 college-age children who have each grown up with a disability. That experience, along with a background in education, led her to create the Water Prairie Chronicles to help share what she has learned with parents of younger children to help them know how to advocate for their children.

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