Show Notes:

Building a community of support: How one family created an accessible housing option to help their child with special needs thrive.

Are you a parent of a child with special needs? Join us as we dive deep into the challenges and triumphs of raising a child with unique abilities. In this episode, we’ll hear from Valerie Arbeau, a passionate advocate and mother of two children with special needs.

We’ll discuss topics such as:

• Long-term planning for your child’s future
• The emotional impact of caregiving and self-care strategies
• Advocacy tips to ensure your child’s needs are met
• Building a strong support network to connect with other parents
• Overcoming challenges and celebrating milestones

Don’t miss this inspiring conversation!

👉Connect with Valerie:

• 💻Website: https://coachingwithvalerieanne.com
• 🎧Podcast Special Needs Moms Circle of Strength: https://www.buzzsprout.com/2227173
• 🏕️AAC Camp Alberta:
  • Camp Website: https://www.ualberta.ca/communications-sciences-and-disorders/our-community/augmentative-and-alternative-communication.html
  • News coverage of first AAC Camp: https://www.cbc.ca/news/canada/calgary/easter-seals-camp-aac-device-augmentative-alternative-communication-1.3742275

🌟Check out the 2024-25 Water Prairie Prayer Journal for Parents! https://amzn.to/3TDBIO5

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👉 Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

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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/

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Episode #113: Accessible Housing Solutions for ALL Abilities

Building a community of support: How one family created an accessible housing option to help their child with special needs thrive.

(Recorded May 27, 2024)

Full Transcript of Interview:

Valerie: When it comes to advocating for accessible housing, I wish more people knew the profound impact that accessible living environments have on the quality of life for individuals with disabilities. Accessible housing is not just about meeting legal standards, it’s about providing a foundation for independence, for dignity, and inclusion.

Tonya: Do you have a child who will have specific housing needs when they grow up? Or maybe you’re concerned about finding accessible housing solutions for your child right now. Today I’m joined by Valerie Arbeau, a certified health and life coach, podcast host, speaker, and best selling author. She’s a special needs mom on a mission to empower other parents.

In this episode, we’ll be exploring how to navigate housing options for children with disabilities. Welcome to the Water Prairie Chronicles, a podcast for special needs parents. I’m your host, Tonya Wollum and I’m glad you’re here. Valerie, welcome to Water Prairie.

Thank you. I’m grateful to be here. Thank you for this opportunity.

So listeners, we’ve been chatting a little bit. This, this is going to be a fun, fun interview for you to listen to. Before we go any deeper, I know that you have a family. I know you have two children. Am I correct on this? And they have special needs, but I don’t know any details. It kind of introduced us to who you are and who your family is.

Okay. So I am a mom to two amazing young adults. Now I find it hard to believe that I’m actually a mother of two adults. This is kind of crazy. So my oldest is 22 and my youngest is 19. Our oldest, we knew had difficulties. We had a prolapse cord when she was born. So she actually was only given a year to live and we have been blessed that she’s here and she’s now 22.

Every day has been a gift. And during that time of processing, we only have a year, we decided we were going to make it the best year ever. And so we just got really involved. We got early intervention in, we did all the things that we needed to do. We just loved on this child, gave her every exposure we could to what an infant would be doing and just had fun.

And then by the time she approached being a year old, we were like, wow, she’s going to be around for a little bit. She just kicked butt, let me tell you. This is a kid that had a lot of respiratory issues. That was one of the things they told us would take her out. But she had a very strong cough and she was on like antibiotics every six weeks or so because she was picking up respiratory infections.

But she was able to kick it every single one of them. And so she made that year mark and we’re like, yes. So that allowed us to then shift our focus from just surviving that first year and giving her a wonderful experience to, okay, let’s challenge her. What can she do? What can we get her to do? So this is a child that is totally dependent for all care.

So she has a G tube. Which she’s, um, fed through, so, um, a little hole in her tummy, tubes connected to it, pump, and a bag of formula, and that’s how she’s fed through the day. And that’s a continuous feed for her. She also is in a wheelchair, and she has a communication device because she’s not able to coordinate her muscles to be able to speak.

So that’s our oldest, Total Care, and our youngest is 19. So, I like to say, Melody Ann is her name, our oldest. She has a visible disability. It was pretty obvious from, you know, when she was born. And so our youngest came three years later, and we had no clue. She had all her fingers and toes, beautiful big blue eyes.

I’m married to a Caucasian, so she totally took the Caucasian look. So big blue eyes. And she has, um, Curly curly brown hair. And we were just like, wow, just an amazing child. She learned really quickly. She was reading by the age of three. I was shocked. And she just kind of just took on to life. And it wasn’t until she probably hit around grade two, that I realized she wasn’t getting invited to birthday parties and a little socially awkward seemed to get along with adults more so than children her age. And by the time she got to grade five, grade six, I’m like, I’m, she’s not responding to regular discipline or scheduling. And we totally had to schedule Melody on just because of her needs.

And this child was not responding to any of that. So by the time they got to grade five, I knew there was something that wasn’t, but I couldn’t put my finger on it. Anyway. We had a diagnosis of ADHD and then fast forward now to two years ago. So when they were 17, we actually got another diagnosis of high functioning autism and that to say our oldest Melody Ann also has autism, which we didn’t, didn’t even come across our radar.

And the only reason it came up was because our speech language pathologists that we had for Melody Ann said, you know, because she’d worked with a lot of children with CP, cerebral palsy. And she said, um, I’m just wondering if Melody Ann’s on the spectrum. And when she brought that up and we started to kind of reflect back, it was like, Oh, of course, but because we were so focused on the CP, on the cerebral palsy and trying to deal with that and the therapies, et cetera, et cetera.

Um, We didn’t even think about a dual diagnosis. I didn’t know kids could have a dual diagnosis. So here I have both of my children with autism and one of them has cerebral palsy along with that. And the other one has ADHD along with that. So I have one with a visible disability and one with an invisible disability.

There were a couple of things that I wanted to focus on because you’re bringing in a strength that is a topic that not everyone that I talked to can bring in. And one of them is, um, talking about housing options. And so you have Your oldest is, is she, is she out of the house now or is she living at home with you?

Okay. Our oldest is actually living in our family home. We actually left her.

Oh, okay. Okay. Well, that, that’s, that’s a, that’s a different, different way of doing it, but I can understand it. So the accessibility of, of that is what I want to talk about a little bit. Thinking back, I’m thinking maybe middle school, high school.

Is that when you started thinking about like, where’s the future going to be? How is, how are we going to do this down the road? How did you go through that process?

Okay, so I’m just going to preface it, uh, Tonya, with the fact that Scott and I are older parents. So I was 38 when I had Melody Anne. And so that, I have always kind of taken care of myself.

I’m a physical therapist by trade. And so I’ve always kind of taken care of my body, but, and, Having Melody Ann pushed me even more to take care of my body because I wanted to be able to take care of her. But I recognized that at some point I was not going to be able to do those lifts and do those transfers and to be able to put in the time and effort that she needed because she is total care.

And so by the time she was 12, Scott and I started to think about, okay, what’s the future going to look like for this child? Because bearing in mind, We were given a year prognosis when she was born, she passed that with flying colors and each year kept showing us how strong she was and how much of a tenacity to life she had.

And so it was interesting to sort of think, okay, I probably, we probably should start thinking about what this is going to look like. Cause we’re not going to be able to do what we’re doing for forever. And so by the time she got to about age, 12. We were thinking, what are our options? I was fortunate enough to have a woman who was in the special needs community who had set up her son in his own home.

And then she had an agency providing 24 hour care and she had two others living with him. So one of the beds of those two was actually a respite bed. And that’s how I came to meet this woman because Melody Ann used to go to respite there periodically when Scott and I needed a break. So we started thinking about it, trying to, and she had a meeting with me, which was lovely of her to give me her time.

And she said, you need to think about what would work for you and your family. And I love the fact that she made me think about my whole family, not just my child. So that’s one thing that I would stress is what’s going to be for the common good of everybody, not just the child or not just for you, because sometimes as a parent, you get to a place where you’re, You’re tired.

You just can’t do it anymore. And you recognize that that’s coming quickly. And so you need to do something. So we had an opportunity to kind of look at the different options and figure out what it was we wanted to do. And it wasn’t until I wish we’d had done something at that time, but we just kind of put it aside because we kept thinking, well, financially, we can’t do it.

We just don’t have the money. We can’t, we can’t set up another home. We don’t have that kind of financial backing. So we put it aside and then fast forward to when Melody Ann was 15. That’s when things started to fall apart. We were blessed to have a caregiver who was with us for six and a half years. And as you know, in your audience probably can appreciate when you have a caregiver for that length of time, you don’t want to let them go because it’s not something that happens every day.

So our caregiver’s name was Reggie and she knew Melody Anne inside and out. We were not fortunate enough to have family live where we lived. So when she decided to move on and try a different career path, we were devastated to say the least. And that forced us to sit down and think about, okay, what do we need to do?

Because the hiring and firing, the hiring and training, uh, HR parts of having people in your home that was becoming hard, that was probably more work than taking care of Melody Ann, to be honest with you. And we recognized that we couldn’t keep hiring people and then them leaving and hiring people and then them leaving.

So we needed to come up with a long term solution. So that’s when we actually sat down and really looked at, okay, what can we do? I wouldn’t advise leaving it until you’re in crisis. I would totally recommend that you start this process way before. So had we done it when she was 12? We probably would’ve been in a much better position to make decisions more calmly instead of being totally stressed out.

So for her, we were able to set her up in our family home because bearing in mind, melody Ann is in a wheelchair, so there’s not a lot of homes that are wheelchair accessible. So it needed to be that house. And with that home, we were able to bring in a couple of other young ladies. We wanted to keep it an all girl home.

So we were able to bring in a couple of ladies to be roommates for Melody Ann. And so the process was not easy and it probably took us about six to eight months, maybe a little bit longer, which was actually really fast for us. We were blessed that we had a lady who had been there, done that. So many years before she had set her son up who had, um, cerebral palsy, but on milder degree of She’d set up him up in a home and had a roommate for him and she had workers come in.

And so she understood my plight as a mother needing to come up with a solution for housing for my child. And she encouraged us and she actually held our hand. Throughout the whole process. And because of her 30 years of experience in this field, she ran an agency. She was able to pull strings and she knew who was who in the zoo.

She knew who to connect with, who to connect us with. And so through a series of her helping us out and us advocating, she was able to get the funding for us. We live in Canada. Um, so we live in a province called Alberta. And so with the province of Alberta, they are very much. uh, have funding available, sort of government programs for people with disabilities.

So we were able to get funding to help fund the caregivers in the home. So that was huge. That was huge. And so the nice thing for Scott and I is that we can just be parents. We don’t have to worry about, you know, Is it time to change the diaper? Is it time to change position? Do I need to give meds? Do I need to change position?

I can just go visit and sing. She likes me to go sing. Her dad plays instruments, so she loves for him to play the violin or the guitar. And so we can just go visit. So that has been the beautiful thing for us with setting up this home. And as I mentioned earlier, I wouldn’t leave it until you’re in crisis because it’s I ended up having to take time off work because I just could not keep all the balls in the air.

And you don’t advocate at your best when you’re stressed out and those cortisol levels are off the charts. So that would be one of the things that I would coach my clients with is start the process early. Start looking at your different options. Think what you would be comfortable with and what would work for your whole family.

Do you think the middle school years are the time or should it be, should it start sooner than that?

It potentially could start sooner than that because not everybody will be in a financial position to put a down payment down on another house. So because our house was wheelchair accessible, Melody and I needed to stay in that house because when we were ready to do something for us to buy a property and build.

It was going to be difficult because they were making the lots smaller. So to get a bungalow was going to be harder. And then of course it’s going to cost more money to get an existing bungalow. Then you’re looking at what modifications need to be made because are the doorways wide enough? Is the bathroom big enough?

You know, To swing a wheelchair or a commode around in, and so there’s lots of considerations. What’s the access to the home? Is there a million steps to get into it? Can a ramp legally and feasibly be attached? And we have lifts, um, for Melody Anne, like a porch lifts they’re called, but we also need to have a ramp, so.

We were fortunate enough, the house that we had about four steps leading up to the front door. So we’re able to put a ramp there. Plus we have a lift in the garage and we also have a lift out back off the deck.

So one of the things I was going to ask you about what some of the modifications were, so you had, you have a couple of lifts, you do have some ramps.

So did you, did you say you had to, you had to widen all the doorways?

Well, this particular house, because it was wheelchair accessible and this total divine intervention, Tonya, I’m just going to say. When we started looking, we had moved to another province. We’d moved to the, both my husband and I are, are ocean people.

So we had moved closer to where my husband was born. And so we were in Halifax or just outside Halifax. And so we were moving back to Calgary for various reasons, which I won’t get into at this moment, but we were moving back to Calgary. And so to find a wheelchair accessible house was not easy. And this house just happened to come up on the market.

But when we looked at the pricing, it’s like, that’s a bit out of our price range. And then interestingly enough, there’s, um, a organization called accessible housing, and, uh, I think it’s called accessible housing and they actually have a website where they have things for sale and the house was on there.

And so we told our realtor, actually our realtor came back to us. He said, Oh, um, this house has come on the market. And we’re like, yeah, we’ve already seen it. Um, We can’t afford it. And anyway, long story short, we were able to get this house. And the reason we were able to get this house that it worked for us was that previous owners, the wife had had MS and she had passed away.

And so that’s why they were selling the house. So they had already done all the modifications and everything. They built it to spec for that lady. So the doorways were all three foot doors. The shower room is to die for. We, there’s a skylight in there, there’s a walking shower, there’s a big bathtub, all kinds of space, large vanity, big counter space that you can put things on, lots of cupboards to put things in.

Like it was just amazing, totally amazing. And so we had everything that we need. They even left the, uh, the tracking for the, Lifts, because Melody Ann now is at a size where we use a sling and a lift to, to transfer her now. And so they left all the tracking as well, which was amazing. And then the other thing, when we turned this into Melody Ann’s, I like to call it her forever home.

So when we turned this into her forever home, one of the other ladies that came to move in, we actually knew again, divine intervention. The two of them had gone to elementary school together. Which was amazing. Uh, and so when she came, she was able to have the main bathroom modified for her. So there was funding available because again, we live in Alberta.

There was funding available to take out the bathtub and make that a roll in shower. And so She got funding to do all of that. And then we had the other young lady that came to move in, same program. She was able to get funding to have a stair lift because her suite is down in the basement. And so unfortunately we had a straight set of stairs.

So she was able to get funding to have that stair lift put in. She’s able to walk, but we don’t know for how long. And right now she’s able to do the stairs, but the stair lift is there, you know, on the days that she may be tired or she’s not feeling it. And so we have been so blessed to live in the province that we live in number one to get the funding that we do and just how things just were orchestrated and everything just kind of fell into place.

For her forever home, where she is now, do the caregivers rotate or is there anyone that lives there as well?

So we have an agency that provide the care, 24 hour care. Because both my daughter, Melody Ann, and the first girl that moved in are G tube fed, wheelchair bound, using communication devices. So they are total care, the both of them.

And the young lady that’s down in the basement pretty much is total care as well, because she’s non verbal, but she is able to move around and she’s able to eat. Um, so these, the agency, they provide 24 hour care. So how they have set it up is they have daytime staff and they have, evening staff, uh, night staff.

And so they have one staff that’s awake all night. And then they have one staff that sleeps for a part of the period of time, but she’s there to help with the getting everybody to bed. And then she is there getting up first thing to help get the ladies up in the morning.

So there is a room for a staff member.

Yes, exactly. Down in the basement. So there’s nobody actually lives there, but they have sleep over staff. And I insisted just because my child has no sense of safety. If you left her on a bed that didn’t have side rails up, she would just roll off. She wouldn’t, doesn’t register for her. So she would be, um, a danger.

So I have insisted that there’s two caregivers a time doing her care whenever they’re doing the care. So the nice thing is, is that majority of the time there’s three staff there, except for the nighttime. And that’s lovely because it gives me peace of mind, keeps it A home like feel with just the three girls.

Cause then we would have to go if we had another one, we’d have to go to group home status. And then it, it, you kind of lose that home feel. So we’ve really appreciated just having the three young ladies and then having the one to one. So that if there’s an issue, there is one staff to deal with the issue.

And then there’s a couple of staff, if somebody’s in the middle of being changed or having a shower or whatever the case may be, that care is not interrupted.

And then the girls, are they socially involved with each other?

Yes. Yes. Uh, it’s actually interesting. And so it’s kind of cute to see how over the years, cause this is now has been, we’re in our sixth year, uh, just sort of interesting to see how they interact with each other.

And. Melody Ann, true to her autism, will say to the other young lady, Go to your room.

Part of the reason for that is, is that there is a TV in the living room. We chose not to put one in Melody Ann’s room, because Melody Ann would stay in her room, if that were the case. And we want her to be out and socialize. But, The other young lady does have a TV in her room. Oh, if Melody Ann wants to watch something, then she will tell the other young lady to go to her room.

There have been a couple of spats here and there, but they have been, well, Melody Ann is usually the one that needs to do the apologizing, will apologize when it’s appropriate.

Let’s face it. These are young, young women. That just comes with the territory.

Absolutely. And what has been beautiful, Tonya, is Melody Anne and the other two young ladies, both, all of them have the experience of having roommates, which is so very different to living with your parents.

And so that’s one of the beautiful things that we have seen. And the other major thing is Melody Anne has had to learn to advocate for herself. She has had to learn to not just say one word and somebody’s going to guess what she’s trying to say. She has to put more words together to create the sentence.

And if we’re not understanding, or if the staff’s not understanding, then they, they’ve been instructed to say, you need to give me more words. I’m not getting what you’re saying. And so it’s just been beautiful to see her be more proficient with her. AAC device and having conversations and interacting with her housemates as well.

I’m just thinking it’s the best situation it sounds like. I’ve, I’ve not heard anyone else doing this. This is great.

It’s working well for us and we have been so grateful. And I think for the other families as well, they have really appreciated what One of them had just, she was on her second marriage, the mom was on her second marriage, and I think they’d only been married about two or so years when their daughter moved into the home.

And so it’s just been great for them to actually nurture their marriage and nurture their relationship and have the time to do that. The other thing that’s been really amazing is That young lady, she’s nonverbal and she’s able to eat and I think a lot of the calming down for her was giving her food.

And so with her being with the agency and the staff and them having their protocols for each of the children, the care plans, the individualized care plans, They’ve been able to have this child not be soothed by food, have her lose weight and maintain that weight loss over the last six years. So it’s just been amazing to see and how she’s kind of come to a place where she’s not creating for food that she’s understanding it’s coming.

You just have to wait and it’s going to be coming in another 30 minutes or it’s going to be coming whenever. So she’s learned, she’s been socialized now to understand that, you know, making a lot of noise and creating is not necessarily going to equate to you getting food. So this has just been beautiful to see.

And as I say, just the weight loss and the maintaining of the weight being off has been amazing. And so, yeah, it’s been huge.

We’ve talked this season a little bit about the funding of the future of our children. We haven’t talked specifically about this being one of those funding issues and just, in fact, of a few weeks back, we had that topic covered.

What I’m thinking here is how do you know, like, you know, where things are today. So 20 years from now. What have you done to ensure that this continues to be care throughout the girls’ lives?

So for us, we are fortunate because we have what we call PDD, they are the funding arm that pay the caregivers. That’s the government program. So they will always be have that. Each of the ladies also, because of their disability, they’re not able to work and be able to, you know, create an income for themselves.

So they have a disability pension is what I’m going to call it. So they get so much money per month. And so that’s how they pay their rent. And that’s how they pay for the programs that they’re in. And that’s what how they pay for their. You know, their toiletries and their personal items, clothing, whatever gifts, if they’re giving gifts to each other or to their family.

And so, because that program is in place, I don’t have to worry because that will always be in place for Melody Ann and the other two young ladies as well. And the other beautiful thing for us as well is the staff at Options is the name of the company that, um, provide the care for the ladies because they, we haven’t had that much staff turnover.

There’s been some staff that have been with us from the beginning. They know the girls really well. I don’t have any family. My husband doesn’t have any family here. None of our families know the care of our children. And so this has been amazing in the fact that I can now, if I was to drop dead tomorrow, Melody Ann’s life would just continue on.

I mean, obviously she would miss us. She would know something was up, but her care, her programming, her home, all of that will stay the same. And for us, the beautiful thing, just when, as I think now about our home, when we left, so my husband and I and our youngest child left the home, left her in it because it was wheelchair accessible.

It made sense for her to stay there. So when we left and we kind of built her up, we explained what was going to be going on, you know, the time leading up to it, she did the transition so beautifully. And we had four staff that we had trained that were working for us that were taken on by the agency. So she had people that knew her well as well, which was amazing.

And so when I compare that to the, one of the other young ladies that moved in, She had a really hard time. She was excited and she wanted to move in. It was her decision to move from her parents, actually. That’s what she wanted, which was amazing. And she, she, um, let her parents know that through her communication device.

And so it was pretty interesting to see her transition. And she was blessed that she had the caregiver that took care of her actually is now the house coordinator. So it was nice to have somebody that was familiar. But her transition to that home took quite a while. Cause I don’t know that she spent a lot of time away from her parents.

So it took her quite a few months to actually settle into the groove and that feeling of, of being independent doing great now. And I just have to tell you this little story cause it kills me. I remember calling over cause you know, initially when we first left, um, and I’ll talk about mom guilt in a minute.

But when we first left, I called over. I’m like, Hey, is it okay to talk to Melody Ann? Like, and I don’t know who the lady was. I don’t think she knew me. She was a newer staff member. She didn’t know me well. And she’s like, Oh, well, Melody Ann’s busy right now. I’m like, Oh, Oh, okay then.

But again, it was that realization. Well, this is Melody Ann’s life now. Yes, sure. She, she can be busy. She doesn’t have to speak to her mother right now just because her mother’s gone. Oh, and I was just going to mention about, um, mom guilt. I have to say, for those that are looking to set their child up in their forever home, because my child was 16, or going on 16 at the time, she was about to be 16 when Eden House, we’ve called it Eden House, because that’s Melody Ann’s middle name, Eden.

And so, I can’t even express. The guilt that I felt. I was abandoning my child. How awful was I? What was I thinking? Why was I doing this when she was young? She was 16 going on 16. Yeah. And so I just like the mom guilt, not necessarily the shame, but I guess there probably was some alongside of the guilt.

But it took me quite a while to get over that. And with that, it also took me quite a while to, to reconcile that the care that I had given Melody Ann for almost 16 years, that my husband and I had given her, was not going to be the same. And I had to be okay with that. And that took me quite a while.

I have kids in college right now.

We’re in that transition time of, you know, getting married. And another year or two, they’re going to be out on their own. So I can understand that, that part of, you know, we’re already transitioning from the full caregiver for our kids because they do have the capability of living on their own. We’re in that, what we call the coaching phase now.

They’re making their decisions. They’re falling when they need to. But we’re there to help kind of pick them up and do a pep talk, give them some tools to try the next time and let them go back out and try it again. Not always easy. It’s, it’s, but that letting go, it’s, it’s, it’s kind of like a lot of our parents have experienced that, that first kindergarten day, when they walked away from the school for the first time, we, we trusted someone else to care for our child.

It may have been a preschool. It may have been fifth grade. Whenever it happened for the first time, it’s not easy for us. You know, we, we, we love our children and some of our kids we have to put more care into. And as you say, the care is not the same. What you do as a mother and a father is never going to be the same as what someone else does.

But it doesn’t mean that it’s not healthy for your child.

Exactly. Exactly.

I’m glad you brought that up because I think it needs to be said that that is a struggle that some will go through, but it’s, it’s okay to go through that because it’s, it’s part of our growth as, as adults, we, we have to grow up a second time.

Exactly. Exactly.

I don’t think I grew up as a child. I think I grew up with my children.

Agreed. Agreed. And I think we are ever learning. And I think. Understanding as parents, especially moms, that you will never arrive and just being open to learning. And I had to learn to let go. I had to learn to trust other people with Melody Ann’s care.

I think it was harder too, Tonya, because Melody Ann can’t speak.

Oh yeah.

And so she’s limited with what she can say on a communication device. And then she’s limited as to whether she has the communication device in, accessible to her. Right. Because we’re relying on the caregivers to set her up with it.

So that’s what I think made it a little harder. Not that I’m saying it’s not hard for anybody, but that was an added layer of the difficulty of letting go because Melody Ann couldn’t advocate for herself. But little did I know, and I’m just going to give you a little story here. Little did I know how my child can advocate for herself.

And that’s one of the beautiful things that came out of this as well is that she did learn to advocate for herself. We had gone over Melody Ann loves Christmas. She loves Christmas. She lives for Christmas. She’s counting down already for Christmas. And she has this Christmas bird that, uh, an adopted grandmother of mine had given her.

And it’s one of those that if you make a loud noise, it just starts to sing, We Wish You a Merry Christmas. And so if there’s a loud noise, the door opens, door closes, it will just set off automatically. And so one of these particular caregivers, who we later learned has ADHD, Obviously this was getting on her nerves.

So she had taken this Christmas bird and she put it in the closet, in Melody Ann’s closet, in Melody Ann’s room. And Melody Ann had asked the staff, Christmas bird closet, that’s what she’d put on her device. And they’d gone in and they’d looked, they couldn’t see it. And then when Scott and I went to visit, she said the same thing to us.

So we got on our hands and knees, we’re looking in the closet, we didn’t see it, we couldn’t find it. We’re looking up on the shelf, we’re looking on the floor. And we couldn’t find this Christmas bird, but she never stopped saying Christmas bird closet. Now she was, she’s persistent. That’s her autism, but she was not mean and nasty with it.

She was just very patient and she just kept, you know, every once in a while she would just say it. And so one of the staff members came in and she just got right down on her hands and knees and she started looking at the back of the closet. So this caregiver had purposely shoved it right out of the way.

Difficult to find, but what I loved about it was Melody Ann didn’t stop advocating for herself. She knew, she’d seen the caregiver put it in there. She knew that it was in there and she wasn’t going to stop until somebody found it.

Well, and that was important to her.

Absolutely.

Have they worked that out now?

Is the Christmas bird out all the time?

It comes out at Christmas time. That caregiver is no longer, no longer working there now.

Because it does seem like it’s bringing up another issue that you need to talk about too. But had she not told you that you wouldn’t know that all that was going on.

Exactly. Yeah. Yeah.

Good for her for sticking up for herself.

Absolutely. Yeah. And again, Tonya, she wouldn’t probably have had that opportunity if she was not living independent of her parents.

You would have known that it was valuable to her. You would have She wouldn’t have had a conflict with it.

Well, I’m looking at our time.

Let’s let’s transition to our advice section here and listeners. If you are new to the podcast this season, I’m having my guests repeat a phrase that I say, and then they’re going to give you a little bit of advice based on whatever the phrase is. And, um, Valerie has agreed to, to play along with me on this one.

So I have four for you. Are you, are you up for all four of them?

I’m up for all four. Let’s see how far we get.

All right. So the first one, the most important thing I’ve learned about supporting a child with cerebral palsy is.

The most important thing I’ve learned about supporting a child with cerebral palsy is Each child with cerebral palsy is unique.

They all have different abilities. They all have different needs. So you need to have a personalized approach.

All right, so number two, every parent of a special needs child should know that.

Every parent of a special needs child should know that they are not alone. There are resources, communities, and strategies available to support them and also to support their child.

You’re not alone because there are many people going through similar experiences, and as I mentioned, there are numerous groups, communities where you can share, learn, and find comfort. And the cool thing is, you don’t have to do it all in person, there’s so much available online as well.

Alright, so number three. When it comes to advocating for accessible housing, I wish more people knew.

When it comes to advocating for accessible housing, I wish more people knew the profound impact that accessible living environments have on the quality of life for individuals with disabilities. Accessible housing is not just about meeting legal standards, it’s about providing a foundation for independence, for dignity, and inclusion.

Well and you, just in what you shared with us too, the, the growth that your daughter’s had. From having that it’s it’s not just accessible physically. It’s the emotional and the mental part of it, too I thoroughly appreciate you sharing that. All right So last one that we have the biggest challenge I faced as a parent of a child with special needs was

The biggest challenge I faced as a parent of a child with special needs was letting go Letting go so that they could live their best life

Before we go, tell me, tell me what you’re doing. Do you have any projects going on? Um, how can our listeners get in touch with you and if they want to work with you, how just, just tell it, tell us all of it.

All right, so I am a health and life coach and I specialize with moms of children with special needs, basically educating them and helping them recognize that they need to have a timeout.

And when I say timeout, um, Talking about time optimization, inner peace, me time, and energy. A lot of us are running 24 seven and we don’t often give ourselves a chance to rest. So it’s important to keep up our energy and there’s definitely ways to do that. And that’s what I love to do is to help people with that.

I’m also a podcaster, a special needs moms. circle of strength. And so I love to showcase special needs moms and their journey and give them an opportunity to have a platform to, to say how life is for them and to be an inspiration for others along the journey as well. I am also a committee member on a steering committee for AAC camp Alberta, alternative augmentative communication.

So my oldest child, Melody Anne, she uses a communication device and many years ago now, we’re actually going to be doing our ninth year of having a camp for these kids that use communication devices. And we started this, we actually went to Idaho to a camp there, And Anne is the director there, and she was just amazing, and the camp was just something that I just didn’t even know what to experience.

My reasoning for going was I wanted to go and take a whole bunch of notes, because my thought was kids like Melody Anne, who use a communication device, they need to be able to go to camp too. And so I went, took copious notes, came back, and we just said, We need to have a camp in Alberta and again, just how everything lined up a person at camp in Idaho knew somebody at the University of Alberta in Edmonton here, and we were able to connect.

And so we started a camp. We had our first in our girl camp in. 2016. And as I said, we’re going to be doing our ninth one this year. And even through COVID pivoted, we did online for two years and we’re back in person. I think two years ago we were back in person. So I’m really excited to be doing that. So that is something else that I am looking to have some donations to.

So if somebody would love to donate to that, I would definitely be appreciative of that. All right.

Let’s, let’s include the links for all of these and the show notes. So if you can get, get those to me podcast, definitely, because if those that are listening on the podcast platforms, it’s easy to click another podcast while you’re listening.

So, so be sure to, to go and do that. And if you want to really support her, leave a review for the podcast while you’re doing that so that, that she can get, get more people finding it. Cause it, it does help to promote it that way. I love the idea of doing the camp because you’re right. I mean, a lot of our kids, they don’t have the opportunity to go because the staff isn’t trained.

They’re not able to, to connect with the kids. This is, this is great because I have not lived in a world where I had a child with an AC device. I’ve learned so much in the last two years about this. And it’s a topic that I’m hoping to have on the podcast in the next year as well. So again, say we’ve got so many things here.

I may, I may have to just bring you back a few times to just continue picking your brain as we go through here.

Anytime, anytime.

Well, I appreciate you coming on today. Thank you for spending some time. Like I said, mom to mom, I always love it. You had some great stories with us too. So I know my listeners have enjoyed this too.

So thank you for sharing with us today.

You’re so very welcome, Tonya. And thank you again for the opportunity.

I hope Valerie’s story of how she and her husband set up Melody Ann’s forever home has inspired you to think outside the box as you look to your child’s future. Be sure to look in the show notes for the links to Valerie’s podcast and AAC Camp Alberta.

If you found value in this episode, click the subscribe button so you don’t miss the next episode, and share this with a friend who might be encouraged by hearing Valerie’s story. Thanks for watching, and I’ll see you next time.