Ask An Autism Mom EP. 55

Setting Up for Adulthood

Who's going to take care of your child someday when you're gone?

How are you going to make sure that your child is properly taken care of when they hit that magic mark of 18 that's a huge thing. You have to prepare and set up for this in advance. Guardianship is a legal process and it gives the already in most cases for special needs kids, the parent a full or a partial control over their affairs. So that includes, finances, health and daily life.

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Episode Highlights:

Today we are sitting down with Kori, a stay at home mom and blogger, who will help us learn what to expect and do to get through the teen years.

  • 05:15 What is gaurdianship?
  • 07:31 When should I apply for it?
  • 09:54 What should I expect?
  • 12:52 How did you deal with the teenage years?
  • 16:05 What is available for my child's future?
  • 19:17 Why is gaurdianship important?
  • 24:51 How do I best help them?
  • 29:54 What is a special needs trust?

Questions from the Audience

  • 30:45 Melissa asks, is this something that would be important for a child who isn't suspected to be able to be on their own?
  • 32:21  Angela asks, is this through family court?
  • 35:37  What if you go to apply, but you're going to be a lot older.
  • 43:40 Have you ever had any trouble getting services for your child
  • 46:48 Is there anything I need to change on my guardianship papers, we took our daughter from foster care at birth and now she has a diagnosis of ASD and SPD.


Speaker 1: Every Monday, live on Facebook to meet other parents, share your tips and learned some tricks. Trolls. It's a really great opportunity for everyone. So remember, we appreciate every, like every share in every comment. If you know someone who could benefit from today's show, tag them in the comments now or share on your timeline today. I'm actually talking with Kori who is a mom of three special needs, mom of two and we will be discussing the teen years and what to expect and how to kind of prepare yourself mentally and physically. Because like I was talking to Kori a few minutes ago, your whole mental thought process has to change when you parent a severely disabled child. So we will be discussing all of that. So if you know someone who could benefit, again, please tag them on the comments section, share on your timeline. Let's help these parents who need help and don't know where to look.

Speaker 1: Find it. So I want to welcome all of you watching live on Facebook or listening to our podcast or on Youtube. If you want to get alerts to ask questions live, you can visit live or type "5" the number "5" in the comments section below. Welcome everyone. Let me see. Good Morning Jason. Good Morning Angela. And then everyone Ed Walsh is watching. Jennifer ponder, I everyone, I'm so excited for today. Good Morning Angela. We all know that parenting is special, needs child is difficult and then we hit the teenage years and everything changes. Who's going to take care of your child someday when you're gone how are you going to make sure that your child is properly taken care of when they hit that magic mark of 18 that's a huge thing. You have to prepare and set up for this in advance. So Kori and I will be discussing what it says she took and how to kind of prepare for your child's future and for your future because your future changes when you are a special needs parent.

Speaker 1: So I can't wait to dig into this with Kori, but first I want to talk about our newest product from our sponsor, laki Remember it's writable lap pad. Lap pad are new, right and chill is revolutionary. New weighted lap pad. It allows you to have the benefit of a weighted lap pad that you can write and draw on with a water pen. It weighs 2.8 pounds and is filled with glass beads that are individually bagged in each compartment for safe. I've used it for Riley and find it amazing. We brought it to a lab, busy robotics competition and she was able to relax and focus with it. She even got to sit down with her cousin and relax and enjoy some time with him. Drink the robotics competition. So again, I'm talking with Kori today from Albany, New York, who is a mom and a blogger and the owner of Kori at home and autism parenting blog for parents of autistic children.

Speaker 1: She wants us to know that as a child she was strong willed, highly sensitive, empathetic, curious, imaginative in a bit of a daydreamer. As an adult, she's a caregiver and nurturer, the realist who lives next door. Although not always, literally a teacher though, not by degree and a researcher. And I think we can all agree that all of us at some point in our lives as a special needs parent, we become the caregiver, the nurturer and the teacher. It's just the natural progression of life as a special needs parent. Now Kori wants to be an advocate for those most in need. I mentor for those looking to find their voice and build a community that's accepting to all a lot like our community That's why I'm so excited to have Kori because you all know ideal with more of the younger years and Kori deals with more of the older years in what to expect.

Speaker 1: So I think Kori and I will make a great team. I am so excited about this. Kori works at home looking to build her online business empire with three children. Two is special needs. She draws from personal experiences and past work experience as a former assistant pre K teacher. So I just want to again say good morning to all of those who are tuning in. We've got Jessica and 10. Yeah. And Patricia. Yes. And the link for the Kickstarter is on the comments section, Laki Kickstarter and that's the checkout or new weighted lap pad. We're cal. Good morning, Melissa. Good afternoon. So Kori, let's jump into this. What exactly is guardianship

Speaker 2: G uardianship is a legal process and it gives the already in most cases for special needs kids, the parent a full or a partial control over their affairs. So that includes, finances, health and daily life. I it's just the safeguard of, you know, and case an individual is unable to make decisions for themselves, than the adult or the appointed guardian takes over that responsibility and over that role.

Speaker 1: So pretty much you're saying that I can, even as an adult, I can still control my child to keep them safe and protect them against correct?

Speaker 2: And in, in the event that they are unable to make those important kind of life decisions for themselves. you take on that role as a, so it's continuing almost your role as parents when they become an adult, essentially.

Speaker 1: But it's parents. I want you to understand how important it is. If you don't think your child can handle finances, you need to do this early. You need to prepare because say they get social security, what's going to happen when they have this and this and have to be paid for every month and they get the money and they don't understand. And I know a lot of our children are hooked on watching youtube videos in video games. What if they go and buy something with all their money not realizing

Speaker 3: yeah.

Speaker 1: And then have no money for the important things. If you have guardianship, that money goes protected under you so that yes, you can still let them buy things that they want, but they won't. I've seen case of a mother was saying that her child put $1,400 worth of things in her Amazon cart within an hour and that is not uncommon. So this is just another way to protect your child and protect yourself.

Speaker 2: Oh, absolutely.

Speaker 1: Now, Kori, when should I start applying for guardianship of my child

Speaker 2: It is recommended that you should start, in the year that your child is going to turn 18, but don't wait too close to the time that they turn 18. S so I would start the process at least, you know, start gathering paperwork from, I believe it goes through your state Supreme Court. You would have to check. It depends really on the individual states. So I would start at least, I give yourself nine months. Okay. Out pushing it would probably be about six. Just so you have that wiggle room because, because it is going through the court, it is a legal process. Usually it should not be too difficult of a process. but you just want to make sure that you have that leeway that you have that room just in case. Exactly. Otherwise you do run the risk of your child potentially going into state custody and then you're going to be battling the state to get guardianship over your child.

Speaker 1: Now, just for those that don't know, and this is not something that I thought of earlier, Kori to ask you, but just hearing you talk right now. S so if my child goes into state custody,

Speaker 1: it came and I applied, I can I still apply for guardianship and get them back?

Speaker 2: Yes. In that case, I would absolutely also bring on the role of the special needs attorney. Because I think what the process of guardianship, you can at least do this on your own. A nd especially if your child has a service coordinator or a social worker at school, Jay who's helping you with the transition process, get their advice, bring on all the support and help that you possibly can. I think the guardians, your process, you can probably do on their own as long as you understand everything that's going on. But if you do find yourself in a court case against the state, it might just be in your best interest to hire a special needs attorney. Just so you make sure that you have everything that you need in terms of paperwork.

Speaker 1: Now, what should I expect when going through this process

Speaker 2: It's just, it's a lot of paperwork, which I think a lot of us, you know, as special needs parents were already used to dealing with a lot of paperwork, both from IEP is, and for those of us who applied for and received a supplemental security income, we know how much paperwork there was involved there. So again, it's just, it's, it's paperwork and the main piece for guardianship is being able to prove that your child is incapable of making decisions for themselves. A nd that sounds, it does sound kind of harsh, but that is how a parent is able to take on that role. A nd usually you can prove this with the evaluations that you may already have in place for your child. So like their diagnosis, if it was from developmental psychiatrist, psychologist, where they might ask for it independently done, but it's not, it's just, it's a lot of paperwork. And I think that's where a lot of parents probably get overwhelmed. But if you break it down, and that's the other reason I recommend starting, you know, between six to nine months in advance, is just so you can go through all the paperwork so you can gather the things that you need. So you're not scrambling at the last minute to find all of these things.

Speaker 1: And I want to recommend that if you do not feel there's going to be a lot of feelings that come out during this Kori, I were briefly discussing it beforehand. She had a dream and a vision as we all did. We're going to raise our family this way and it's going to be like this and this is going to happen. Our kids are going to grow up, go onto further education or jobs. We're going to do this with our lives.

Speaker 1: And then we have a child with special needs who needs us for the rest of their lives. So if during this process you feel yourself getting overwhelmed, please, please seek help. Yes. No one is going to look at you negatively because you're calling his therapist or counselor. You need to take care of yourself as the parent in order to be a good parent to your child. And I say that all the time and I truly do mean it.

Speaker 2: Oh, absolutely. I don't think we should be. Anyone should be sure to seek help. There's nothing wrong with that.

Speaker 1: It actually, to me, it makes you a stronger person because you were able to stop and say, I need help.

Speaker 2: Well, we teach our kids up all the time that you need to ask. You can't do something. Why should we

Speaker 1: We're, hypocrites for almost feed our kids ask for help and we refuse to seek help. I actually got that put in my face the other day by my 15 year old. So it's a good reminder. Yes. Now, Kori, how did you deal with these teenage years I'm a long way off, but I am not looking forward to them.

Speaker 2: W ell if I'm going to be completely honest about it, when my daughter turned 13, well really it was when that realization set in that she was going to be with the, probably for the rest of her adult life. I had a full, complete mental breakdown, ugly tears on the floor crying. A and not because

Speaker 2: it was just everything was setting in. I think for me again, that okay, this is everything that's going to be happening. This is everything that we have to start preparing for. Yes. And it wasn't so much that, oh my God, I'm going to be saddled with my daughter for the rest of my life. That was not it at all. What was scaring me the most And I think what was really bring about the ugly tears was what was going to happen to her when I die. Yes. And that still scares me cause I, I don't know. I can do all this planning and I can start setting all of these things up, but I still don't know. And it's one of my biggest fears, if not my biggest fear in life is it I don't know.

Speaker 1: It surely is. I watched many of my viewers know that I had a sister with special needs and I had to watch my parents cry at the thought that she would never take care of herself. She was in a wheelchair dependent on oxygen. She had a trick to breathe a g tube to feed her. She was completely dependent on 24 hour nursing care. And watching my mother breakdown at the thought of what happens when mom and dad passed. I remember I was probably 11 or 12. I looked at my mom and I said, it's okay. I'll take care of her for the rest of her life if she needs me. And it's kind of funny because my mom's like, no, no, you're too young. But I kept that promise to my sister. She was 34 when she died and my best friend, and now I see my son and I, you know, my, Dave and I talk sometimes about what's going to happen to Riley. Yes, she's high functioning. She's able to do a lot for herself, but is she ever going to be truly that 100% independent And now we have 15 year old Jack who looks to me and goes, mom, I got this. So I mean it's hard and like Kori was tearing up. I'm tearing up because it's a hard thought. What's going to happen. Yeah. And this is why Kori and I both recommend therapy is key. T hese feelings will never go away.

Speaker 1: You need help. So please seek help if you need it. Now, Kori, what's available for my child's future

Speaker 2: There are things, it depends on the state again, but there are things like there's April accounts you can set up special needs, trusts. I would highly recommend setting up a living will for yourself.

Speaker 2: And you know, just beyond that you can set up things and get it, which just bank accounts, it all, it makes me kind of mad, but it depends on the state. And then even for those outside of the United States, it depends on the country that you live in. And let, the reason it makes me mad, it makes me so frustrated is because when our kids start to age out of the system, whatever it is that they've been in up until, okay, look, for example in my state, my daughter's program, she will be in there until she's 21 after she turns 21, we transition over to adult services. We are very fortunate that we have a good, you know, availability in our state. But that's not always the case in other states, if not always the case in other countries. And this just frustrates me to no end because just because our kids have aged out of or transitioned out of these programs and these services, does it mean that they, the disability, the autism has been left behind too.

Speaker 2: They don't help grow that it just does not go away. And we ended up doing, I think both, not just our the kids, the individuals who have autism a big disservice. But we also did do these families a huge disservice because now they're left scrambling to wonder what am I going to do So I would highly encourage parents once your child turns 13 or 14 at your IEP meeting, if you're in the United States to ask about their transition plan and to start exploring options for adult services in your area. Y ou may think that it's early, especially, you know, when they're just turning in teenage years. But in reality, wait, lists are through the roof and we don't know, even in the United States, the services,

Speaker 4: t

Speaker 2: What the funding is going to be like. So it's, there's a lot to think about, but if you start taking those little baby steps now, then you're really setting up yourself from a lot better to at least be prepared for these.

Speaker 1: Exactly.

Speaker 1: I know here just looking at our adult day program, it's a four year wait. Yeah. So when your child ages at a school and have has go to day program, you need to have them on that wait list. So take Kori's advice please. And at 13 and 14, start looking at transitional planning. No ow why is guardianship so important, Kori

Speaker 2: For us it was, it was one of those things that we needed, we, I wanted to have in place for peace of mind, because my daughter is what they would consider severe end of the spectrum. And I just, her being able to do certain things for herself would just never just won't happen. So I took on the role as most parents do. We take on the role of primary caregiver in addition to being primary, you know, we're not just their pair of, we are their primary caregiver. So for me taking on the guardianship role was just that natural transition and that next step, I'm also her representative payee for her SSI still again, it was just one of those natural steps for me to be taken except for now instead of just being the financial piece of it, it's also the legal decisions. A and then, you know, health decisions we'll be setting up health care proxy and I believe power of attorney, it's still a lot to, a lot going on.

Speaker 1: You briefly talked about it and folks, if you have any questions that we can't answer on the show, remember we, I will be in group.I if Kori joins group, great. If not, I will get her the questions you have. We will also links to Kori's blog where she does a lot of this and can maybe walk you through it, but I want you to realize that it's not just saying I have legal rights over my child. Like she would just said it's the SSI, it's the healthcare proxy. It's every little part. You can't just take part of it and not all of it. Yes. Because social security will put someone on your child's account to take care of the money and they may use it in ways that you do not agree with. I know I see a lot of people who say, well they only give me $20 a month for rent and they put all this money to other things that are silly. Well, you need to be their SSI representative. Yes.

Speaker 2: To tech them.

Speaker 2: I'm the Rep teenag

Speaker 2: er

Speaker 2: year One of the first things we set up when we applied for SSI was her appointed representative payee. It goes into a dedicated bank account just for her SSI money and it is used just for her things. Make sure,

Speaker 1: and I mean again speaking from personal experience and I just noticed my mother's listening, so mom, I'm sorry I'm talking a lot about Julie today because I've seen this happen with us, but you need to be realistic folks. If you are the SSI representative, I've seen my parents, Julie was in a home and so she would pay her remember board and Whatnot and oftentimes my dad put his own money into buying her personal items. She's still needed deodorant, she still needed shampoo and it didn't quite cover her disability payments. Didn't quite cover everything. Right. So being their pay, you have to take into account if it doesn't cover everything you need to figure out as the pay and as mom or that. In my case, my dad was a money person, my mom was more the nurturer. But you need to figure out who's going to come up with this extra money and how are you going to deal with it.

Speaker 2: Yeah, there's the budgeting piece to so it can be tricky. Very, it can be very tricky. There's a lot, it's a lot to take in and especially, you know, as we transition, not only as our kids transition to each out of, um, I think we go through just as much. Oh yes. You know, just the person. It's the growth that we go through. Um, and, and the evolving, it's not so much growth, but it's so our rules evolve as our kids get older. Um, and you know, not just for special needs for parents of special needs, but parents in general, our roles evolve. Oh yes.

Speaker 1: I just, we had a one turned 15 this week and it was, I'm going more from being the mom who takes care of everything too. He's expecting me to step back and let him kind of take over certain aspects of his life. He's neuro-typical, but it's still really, really difficult for me.

Speaker 2: I'm opposite of that. It's my teenager is one who is autistic and I have a neuro typical five year old and she, she's a hand. I joke with people, I'm like, yeah, no, she's my, my, my, my autistic daughter is the easy one.

Speaker 1: And that's why I'm lately the 15 year old's been more of a handful than the seven year old because he's, he's growing and he's, you know, girl crazy for lack of a better word. We've discovered earls and we've discovered expensive shoes and it's been some quotes. That's a whole nother conversation. Oh yeah. Now Cory, how would I best help my child

Speaker 2: if they are capable and able and most of our kids are even to some capacity start working on self advocacy skills because that is huge because then you are telling them and you were equipping them, you're empowering them to be part of the process and they still have some control over the situation. Um, so I would say, you know, absolutely involve your child in every step of the process as possible as they are able to understand. Um, and you know, I say this with full, again, full transparency. My daughter is what they would consider to be on the severe end of the spectrum. Uh, she is nonverbal so we aren't sure if she's very smart. I'm just not sure how much she understands and if she doesn't understand, I don't know if she has the exact language right now to communicate it. Um, but I would still want to involve her in as many things as possible, whether that's, you know, what she would like to be doing after, um, she transitions out

Speaker 3: and

Speaker 2: because that kind of thing. So it absolutely involve your child in as many aspects of the planning as you can because it's not just empowering for them, but you're also, it's respectful to them. You don't want to take that away from them if you,

Speaker 1: if there is participating and watch them watch their interest because they're nonverbal Korea, but you probably a few times have had a plan and then you watch her and you see she doesn't like what you want. Yeah. And she's very,

Speaker 2: she in her own way. She's very vocal about telling me that she doesn't like things like, all right, good.

Speaker 1: Let's move on to plan B. This is what you do. You want,

Speaker 2: we're going to do what you want at I'm backing off.

Speaker 1: Exactly. So don't just say, Oh, my child's nonverbal. I'll have to decide everything. Then it will give you cues. They will tell you.

Speaker 2: Yeah. She's very, very adamant about certain things and not shy to

Speaker 1: show her displeasure over. That was my sister. If she was not happy, you would know about it. Trust.

Speaker 2: And that's just the other thing. It's, I'm trying to actually train myself on this. Just because she's nonverbal does not mean that she's not. It means for me that she's nonspeaking. Um, she has vocabulary. She has a way to communicate. That was another thing we had to do was, um, with techs that the picture exchange communication, we're getting her a voice box or a device sign language, anything that we could do to help her better access her environment. So she has a voice. She has that vocabulary. I, like I said, it's a piece I'm working on for myself. Um, she's not nonverbal. She's just not speaking.

Speaker 1: She's not able to properly get through to you. Yes, yes, in a verbal way.

Speaker 2: Yes, but she is, she communicates in her way and in the ways that we have been able to provide for her. Um, so I can't say that she's not, again, mindset shifts all the time

Speaker 1: in your mind set is over the years going to constantly shift as a special needs parents as any parent, your mind is constantly now letting them advocate for themselves is key. Whether they're verbal or nonverbal. Um, many of you who are in group have seen that. Riley has been bullied lately and she went to the principal last week with mom and dad and she told them that she was ready to tell the class she was autistic. So they did a whole lesson plan. The principal was very much against it told me we were making the biggest mistake of our lives. I looked at her and said, Riley is seven and says she's going to do this. We are not going to stop her and teach her that. She cannot advocate for what she needs in life

Speaker 2: at the hs seven if she's prepared to tell her peers that she is autistic, more power to her. We need more kids like Riley people like your principal.

Speaker 1: We have a wonderful assistant principal who jumps right on this and has a lesson than in a book. And if your child wants to advocate in any way, let them yes, they know where their limits are. We don't

Speaker 2: and support them in that. Exactly. You know, don't, there are enough people out there who are trying to silence our kids already. We should not be one of them.

Speaker 1: I agree. Now I do have a couple more questions, but we are running a little slow in. I want to get to the questions from you guys. So what I'm going to do is I wanted to talk more about a special needs trust. Now Corey has recently written a blog on a special needs trust and she's actually writing a blog for us on guardianship. So I'm going to have her send me both of them so we can post both of them in group so we can learn more about the special needs trust and if you have questions about the special needs, crests trust, we will either get Korean group or again you can get them to me and I will get them to Corey or you can probably access Cory through her blog. Yes, absolutely. But Cory, if you can get me those blogs, I will gladly post them in group for you and that way we can get people talking about trust in the special needs trust and what it is and how to access it. Now I really want to get into some of these questions that I have seen pop up. Um,

Speaker 3: yeah,

Speaker 1: Melissa asks, is this something that would be important for a child who isn't suspected to be able to be on their own My son is only three and a half, but there have been comments said that he will not be able to be on his own. First of all, Melissa, don't listen to that. They told us that for Riley and now look at her grow. But Cory, what do you have to say about that

Speaker 2: Um, first I agreed Jen, that at the age of three and a half, it's very early to tell and you never know what your child is going to be capable of as they get older. However, as they do start to get older and you start to become more aware of their ability and, and lack of ability to independently do things for themselves, whether it's um, the daily living skills or it's financial piece, which, you know, when we say financial things, it's something as simple as learning how to make change and recognize and currency. Are they able to go grocery shopping by themselves Can they prepare a simple meal Um, what about transportation Can they drive Can they navigate a bus system There's so many like little things that I think we tend to take for granted that we need to look at. Is it realistic for our child to be able to do these things And if you find yourself, say no more than you were saying, yes, my child can do this, then I would seriously start considering the guardianship pieces. Just so to have that peace of mind.

Speaker 3: Okay.

Speaker 1: Now Angela asks, is this through family court

Speaker 2: That depends on the state. Um, for New York state is through our supreme court said it does, it depends on your state. So I would look at your individual but I ended up doing was calling was my county courthouse and they were the ones who told me that it went through our state Supreme Court and not through county, not through family. So you'd have to check individual states,

Speaker 1: but call your call your local courthouse and ask them questions. They are not only there to deal with the legal issues in your state, they're there to help you.

Speaker 2: Um, the other place that you can call or ask for is if your child has, um, a social worker at school, um, or a transition plan manager ask them as well because they are supposed to be there as resources to help us access to these things.

Speaker 1: I agree. Now, Angela, that's a very good question. I'm very interested to know the answer of those. The child lose any of their rights such as voting or driving

Speaker 2: voting. Yes, I've grown heat. Um, I have not, I have all of the paper, I don't have any in my paperwork in front of me, but you would need to register them for a driver's license or non driver's ID. Um, the voting rights, I'm not 100% sure. I know as for adults, males for males in particular, you have to register them for the draft.

Speaker 3: MMM.

Speaker 2: So there's, there's that piece I would check with your state.

Speaker 1: Angela. I know she is talking about male children. She is the mother of males.

Speaker 3: Yep.

Speaker 1: Amy, I understand that you have a lot of trouble asking for help, but trust me, Corey and I have both been there. Asking for help is the biggest key.

Speaker 3: Yeah.

Speaker 1: You cannot help your child

Speaker 2: even if you aren't asking for professional help, which if you do need to ask for professional help, there's absolutely no shame in asking for professional health. If you have a local network of moms, even if it's, um, a virtual network, reach out to that network. Um, and just, you know, don't, don't be afraid to take that stuff. I had a lot of trouble asking me for help too. I'm a very proud person and for me asking for help, I felt like I was being weak and that I don't like being vulnerable. I don't like showing that to people, but I've learned, you know, it's not being, and it's not being vulnerable. It's being honest with myself. And once I started to asking for help or at least admitting that I needed help, it was

Speaker 3: huge difference.

Speaker 1: I agree. No, I have a bit of an interesting question. Um, Corey, I'm not sure if you can help, but if not, Patricia, we will find you some information, but I'm pretty sure Cory, I'll understand this one. What if you go to apply, but you're going to be a lot older. Say it's an older mom. I mean, moms in their forties having children nowadays, what do you do

Speaker 2: Yes. Um, when you go to apply for guardianship, you will have a primary guardian and you will have, I believe it's two alternate guardians. Um, there's also, at least with my state, again, I cannot stress this enough check with your state for specific, um, the guidelines or may vary by state to state. So always check with your individual state. But with New York you can have the primary guardian and then up to two backup guardians. And then I was also told again with New York state that you can apply for Co guardianship. Um, so if it's, in my case, my daughter's father and I are divorced, um, we had originally looked into applying for code guardian ship, um, in my county and then in the county that he lives in. What we are going to do instead is that I am applying for primary guardian ship and he's willing to be one of the backup guardians. Oh. So yes, you can have someone else on there with you and that's not a bad idea at all. Um, just to have that extra layer in place,

Speaker 1: it's something that you're probably would recommend everyone to have a backup.

Speaker 2: Yes. Yes. Just in case. I mean you never, you never know. It's the added piece of mind.

Speaker 1: Exactly. No, Amy, I know that his behaviors are in emerging now and he's only five. Do not let the score school system ignore him. Amy, let's talk at later message me or post in group and you and I will figure out how to get the school system to not ignore them because that is very, very, very important. And I know you're an older mom, so let's get you the help you need Amy to better advocate for your child. Um, ray. Yes. They do show communication in other ways. Sign language. My sister was eye contact and screaming. I mean they have their own little ways.

Speaker 3: Oh yeah.

Speaker 1: Angela, I love your take on everything. Angela says words are not necessary for communicating.

Speaker 3: Yup.

Speaker 2: And then we have um, uh,

Speaker 2: still agree more there. Um, my first way of communicating with my daughter was actually through sentence. That's was our, with Riley. Yup.

Speaker 1: See I believed in baby sign language. So we started baby sign before she even started regressing.

Speaker 2: I think sign language is important for any kid. It's um, the breast with babies too. Um, cause that's one of the reasons baby's cries for communication purposes. You're giving them language and you're giving them communication. And it's huge

Speaker 1: because we taught Riley baby sign when she was 18 months and started this major regression. She stopped speaking, she stopped eating and all of that. She kept for some reason three signs more cookie. And um, I think it was pleased. Oh my, my daughter is also a candy cookie. Yup.

Speaker 2: More eat. Yes. All these play. And we just learned this one

Speaker 1: iPad. So even even now we're still learning more and you never stop learning. Even us as adults, we learn something new everyday. I once heard a famous philosopher say, the day I stop learning is the day I die.

Speaker 2: Oh absolutely. And I think that's, it is so important for us as parents to keep learning as much as we can, especially with all the different changes in laws and all. There's a lot to keep up with, but um, and some of it may seem, you know, pretty over our heads at times, but keep pushing and keep learning.

Speaker 1: Now Amy, I understand that it's frustrating. Um, her son is very verbal but with limited intelligibility, he tested at 2.7 months, two years, seven months and it's five and a half. Amy. It's hard. But remember our children grow, they change, they learn skills here. Yes. They may never have the full verbal skills, but he will grow and learn and kind of change as through

Speaker 3: mmm.

Speaker 1: His maturing and growing and he's just starting school so he's very new to the school system. So there's still a lot of room for growth and

Speaker 3: whatnot.

Speaker 1: Now Ray does photos to communicate yet or a favorite toy to talk to themselves.

Speaker 3: Okay.

Speaker 1: I love that. Um,

Speaker 3: okay,

Speaker 1: Tanya, I love that you already have things in place for your older son getting custody of Jackson and the bed.

Speaker 3: Okay.

Speaker 1: That he passes. Will this automatically continue if Jackson turns 18, Corey

Speaker 2: as long as you have it in place now or should, but check with your quota system and make sure that it is on, it needs to be in more specific language. Um, because it changes from custody to guardianship. Guardianship is not the same as custody.

Speaker 3: MMM.

Speaker 2: So check with your, if you have a special needs attorney, check with your attorney. If you do not have a special needs attorney, check with your court system. Um, usually they have free legal advice and if you can't afford, you know right now to go to a special needs attorney, um, go to try local law clinics. Um, they're run through the law schools and there are a lot of those who have these things available to families, um, on the lower incomes, well not even with lower incomes, but who are looking to do this kind of pro bono work and don't discount that at all. Um,

Speaker 3: okay.

Speaker 2: Because you should be accessing every resource out there.

Speaker 3: Okay.

Speaker 1: I agree. Um, I'm going to skip through some of these comments. This is one of our longest running shows we'd had. I am so excited. This proves to me that we need to talk more about aging. I will have some more people on our show later on to talk about different aspects of aging. Um, again, I will be in group today. We can keep discussing this in group. Um, Melissa, I'm so proud that your niece at 11 and a half is an advocate for your nephew or for your son telling people that they need to learn and whatnot. I was that person. I was my sister's voice and it's Kinda neat if they have a sibling or a relative that, especially when it's a child, it's so innocent when they have a child who sits there and is their voice.

Speaker 3: Okay.

Speaker 1: MMM. Cory, this is a question specific to New York. Okay. Have you ever had any trouble getting services for your child We have a mother who is in New York who is having tremendous issues getting the proper services set up.

Speaker 2: We were incredibly lucky in that we have not run into a lot of issues. Getting services are only, our main issue that we ever ran into was the turnover with my daughters. Um, t used to be called Medicaid service coordinator. Um, I can't remember the exact term on it now, but um, that was our role hang up. But the biggest key for services in any state, not just New York state is advocating and being very persistent. Um, and being, yeah, just being very persistent and being very pushy and don't always take no for an answer because you're going to hear no a lot or you're going to hear, oh, we can't do that right now. I don't care. This is what I need for my child. How can you help me get this for my child And um, if you feel that you are not fully able to advocate for your child like that, seek, um, there are professional advocates out there. I would definitely do that. Um, it's it. Yeah. No, definitely. If you're in New York too, feel free to message me on Facebook. Um, I don't know where you are in New York, but um, I'll be happy to start looking into

Speaker 1: Jessica connect with me after the show and we will get you connected with Corey. Um, I think you guys need to sit down and have a talk about what you're saying provides and how to get you more help. I know she struggled for awhile with this Corey.

Speaker 2: Okay.

Speaker 1: Now Amy, um, if you get SSD for yourself, it depends on the state. Some states allow you to get SSD for yourself, an SSI for your child.

Speaker 3: Okay.

Speaker 2: In most, and I want to say in most states SSI is counted separate. Um, but yeah, like he's just just said, Ken, it really does depend on the stage. At least when they turn 18 it depends on their income.

Speaker 1: So in reference to way five and a half year old child. Okay. Then it might,

Speaker 2: yeah, it might,

Speaker 1: Amy, there's no hair, there's no harm in trying. Yeah. I always say if you think your child would qualify tribe. MMM.

Speaker 3: Okay.

Speaker 2: Said I'm at custodian died just for,

Speaker 3: that's it. Okay.

Speaker 1: So sorry folks, I'm just trying to go as quick as I can.

Speaker 3: Okay.

Speaker 1: So we have Christine who says I have guardianship of my five year old and I also have an allocation of parental responsibility. Is there anything I need to change on my guardianship papers, we took our daughter from foster care at birth and now she has a diagnosis of ASD and SPD.

Speaker 2: The only thing I would say in that case is um, when it gets closer to the time she turns 18 to update your paperwork or just make sure that the verbiage and the language is still in place so that nothing else, nothing major changes. It's just updating. Um, age wise in most states, uh, you will need to check in with the court. I believe it's every year for your guardianship case. Just so you know, it's how they used to have SSI reported. You had to report every year with the SSI office to say this is how we spent the money. And then I think it was every three years you had to do a phone call evaluation. Um, just to check in with them guardianship.

Speaker 3: Okay.

Speaker 2: Depending on the state, but I believe in most states it is every year that you have to check in just to say, you know, this is how it's going, this is what's happening. Um, yeah,

Speaker 3: wow.

Speaker 2: Which might seem invasive and might seem a bit of a headache, but it's really for the benefit of your child and for the benefit of yourself just to make sure that everything is going okay.

Speaker 3: Okay.

Speaker 1: I agree now, yes for signing, we use signing time videos. We also use signing time that we got off of Youtube. She loved that. Now, um, we have lots of thank you for your insight today. It was extremely helpful. Um, they love the show. Jessica. Again, please connect with me and I will help you connect with Corey. You're in the same state. Your question here is, um, very, very key that I want you to copy and paste this and send it to me so I can get it to Corey as we have run out of time unfortunately. Um, but I think you and Corey can work together and I think she would call, you'd be an excellent help for Jessica with the issue she is having. Christine, I'm happy I'm, Christine does do a guardianship report every year. Okay. Yup. Yup. So I want to thank everyone for watching.

Speaker 1: This was has to be one of our most successful shows today for the length of time. Amazing the things you realize folks when you're thinking about your child's future. So I'm going to invite Koreans were our parent group. I want to thank all of you for watching. You can join me every Monday at 1:00 PM eastern for ask an autism mom by Latchkey kid. And you can always join our parent's support forward slash group. And remember we currently have the Kickstarter. We're getting ready to start for our writeable weighted lap pad. This thing is phenomenal. Folks get paid on it. While you can join our Kickstarter, check it out at dot com forward slash Kickstarter if you have any questions or concerns, please go to um, lackey, forward slash ask. You can leave a question for me to answer live on an upcoming show, but more than that, if you have something really important, please go to group. I'm in there a million times a day. I have moderators that if something and friends in there that if something is posted in there and it needs me right away, they will get me right away. So please join us in group. We love you all. We thank you all for watching and remember, every child brings good luck.

Speaker 3: Okay.

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