Do you ever feel like you’re just not enough? As special needs parents, I’m pretty sure we all have at some point. This episode is a pep-talk of sorts woven in with practical advice from guest Lisa Rawley, a developmental specialist with 20 years of experience.
We discuss when increasing or reducing therapies makes sense, the power of creating a strategy before the misbehavior arises, and the importance of knowing that we are enough.
Wonder if your child could be on the autism spectrum? Click link below to listen to a 3 minute outtake about autism red flags to look for in a child: https://therarelifepodcast.com/show-notes/red-flags-autism-clip-lisa
More about Early Intervention: https://www.parentcenterhub.org/ei-overview/
You don't have to be the therapist. You are Mom and Dad.
Madeline Cheney 0:07
Hi, I'm your host Madeline Cheney. You are listening to Episode 4 of The Rare Life: You Are Not Your Child's Therapist. Shocker, I know. This is a conversation with one of my son's therapist, Lisa Rawley. She is a developmental specialist. And if you don't know what that is, don't worry. We'll define it later on in the conversation. She entered the scene very early on. She has such a big heart. She's just so loving and there was no question that she loved us and cared about us and that was really helpful to me, especially in the early days when things were really kind of dark and overwhelming. And so today I have for you a pep talk of sorts from her with some practical advice woven in coming from her 20 years experience as an in home therapist so this really is a gem. Lisa is one of the many members of our medical and therapy tribe and we love her. So Lisa is a lover of books and spending time with her two daughters. Let's get into our conversation.
Madeline Cheney 1:17
So Lisa, thank you so much for being on the show. I'm so grateful for your willingness.
Maddy, I get to talk about the thing that I'm the most passionate about. So this is just a great honor. So thanks for inviting me.
Madeline Cheney 1:30
You're so welcome. So I'm gonna actually start out with a little story. Kimball was one of Lisa's many children that she visited until he was 18 months old. That's when we moved away to a different school district. And so when we were meeting with our new early intervention therapists, I asked about having a developmental specialist and they looked at me like I had three eyes and they were like, what's that? And so I realized that that is not a term that everyone knows. So can you please define what you do on a day to day basis?
Yes, we look at the big picture of the children that we see. So we're looking at everything. So the developmental specialists in my agency get those kids who were just trying to figure out, we usually pick them up after they first been evaluated. And then after some time, we can make referrals to physical therapy, occupational therapy and speech therapy. But we again are looking at how all aspects of development are impacting all the other aspects of development and trying to make it into one big whole; This one little person, what makes this little person tick in all different aspects of development?
Madeline Cheney 2:47
Okay. So you have an emphasis in your degree with intellectual handicaps. What kind of mental disabilities or cognitive delays do these children have that you typically work with?
That's what makes the job so fabulous is I see everything, and so when I started out in school years ago and I worked in the public schools, my emphasis was on kids with intellectual disabilities. But now I see everything from kids with down syndrome, kids with possible autism, kids who are just sort of basically delayed and we don't know why. Kids with heart conditions, so that's caused the delays. So it's just so big and so exciting because every child is a new adventure. I tend to get the kids who seem to have behaviors consistent with possible autism, but who haven't received a diagnosis yet. Those are the kids I tend to get in addition to the others.
Madeline Cheney 3:49
What are some pieces of advice or wisdom you can give to these moms that are in a situation like me with children that have these medical complexities and may or may not be seeing a developmental specialist like yourself, what can you tell us?
Oh, there's so much but what the first thing I'd want to say is (look it almost makes me cry) is that I want you moms and dads and grandparents, whoever the primary caregivers are, I want you to know that you don't have to be the therapist. You are mom and dad, and that all of the things that you need to work on in order to help your child reach their potential, those things, most of them, can happen during your daily routines. You aren't a therapist where you have to set aside that time. So you're giving baths, you're feeding your kids, you're dressing him, in and out of the car 1000 times a day probably, and then your play time. All of those times are wonderful opportunities to work, to use those strategies that your therapists have given you to facilitate their development, and it just makes their whole day rich. It's like you're marinating them in all of those things that they need, but just in regular routine, so it takes the pressure off a parent; you don't have to be a therapist, just be loving, attentive mom.
Madeline Cheney 5:20
Right. One thing that I noticed too, I was thinking about this a lot. As I was reading books to Kimball, he, so he's going to be two soon. And he has just started to enjoy reading books together. And that's a combination of a lot of things. But since I have started introducing books and making that more of a part of our routine, as I should have a long time ago, he resisted it a lot, now he wants the books. So I think that that helps a lot when the child is saying books, books or whatever it may be when you get to that routine when they're in the habit and you've done it consistently because at first,it actually is pretty hard to incorporate all these different things into your routines when you're just underwater anyway with all the different things with them, but once you're able to get to the point that it's a habit and the child looks forward to it, and they expect it, it takes the work out of it because Kimball's screaming for books, and now I don't have to make that effort. And so I think that's one of the wins of having your routine full of the assignments from your therapists.
Yeah. And I think you should give yourself more credit, because I know you did have books laying around from the time he was very little. So he saw them. He knows what the book was, he had touched it, he had felt it, he had seen you holding it. So now you've got this wonderful joyful interaction and you're just sharing that time. And it's such a payoff, isn't it? Because it's just become part of your routine. And books are power. So that's one suggestion I would make to families is just have board books, those thicker books laying around because kids will gravitate toward them. I promise. If you have them laying around and don't make it into a chore, it's just a delightful interaction even if it only lasts five seconds.
Madeline Cheney 7:09
Right. And I think that can even be a hard when you have these assignments when they feel almost like homework. And it's hard to keep it light and joyful, I have to really focus on trying to make it playful and fun. Like he's still a baby ,I'm still his mom, we're just doing this for fun, so that he doesn't resist it more because they can tell. If it's just an assignment.
That's what I like about kids is they're very perceptive, I don't care how severe their cognitive delay is. Kids are very perceptive. So if they feel pressure, that is a deal breaker for them. And you're right, any kind of pressure that you as moms feel is so counterproductive. And Maddy, you taught me that just recently, I've been doing this a long time. And I realized that I think I give too many suggestions. And so if you let me I can give an example of something you said how at one point, Kimball in his development was ready to stack, was ready to stack blocks. He knew how to put things in containers and dump them out. And so you know, you look at the developmental charts and the next thing is stacking. So I kept giving you ideas. We'll try this Maddy, try this. And Kimball was so not interested in that stuff. So I contrast that with Kimball's other therapist, his hearing specialist who gave the suggestion that when Kimball grunts or yells for something he wants instead of using a more appropriate thing, like a gesture or a sound, or even a word if he knows the word, so she gave you a strategy to use to help him move away from grunting and yelling to something more appropriate. Well, now what are you going to work on, Maddy, you're going to work on how do I get my child to stop yelling for what he wants, and you're gonna do it 1000 times a day.
Madeline Cheney 9:02
Right? And we are killing it. I do it all day long, because he gives me opportunity all day long. And I feel great about myself!
I know, right? And that's the most important thing. But stacking, who cares? He's gonna get that down the road when he's ready. He's got appropriate toys. He's on the floor with toys. So the point is, you have a strategy for something that comes up all the time. So it's useful for you. It's going to help him learn new skills, and it's a win win.
Madeline Cheney 9:36
Right, so true. What would you say to people that think the more therapy your child has, the better?
I see in some families, that having a therapist help them often during the week is helpful for them, where they're either having different therapists come into the home or they're going to different clinics outside of the home. Some families feel that that is helpful. On the other hand, there are families who could get very, very overwhelmed. And I would encourage them to step back and realize more therapy is not necessarily better. So if, as a mom, you say, you know, this therapy doesn't seem to be helping right now whether the child is crying through all of it, or they've hit a plateau and so going to therapy, feeding therapy appointments every week is not useful. I've seen moms give themselves permission. This isn't helping me right now. I'm having to leave my other kids. It's very counterproductive to my family as a whole. The point is, each family needs to look at their situation. What's happening at any given time, you know, is it the holidays, do you have other kids with more intense needs, older siblings, whatever. Give yourself permission to say, this is too much. And also tell yourself I am not hurting my child by not taking them to another therapist.
Madeline Cheney 11:14
I think I'll add to that I even think it also helps the child with the therapy. I've cut down on therapies before too, I felt like I was drowning, like I, I think that's when you know, you need to cut back on therapies because of that total overwhelm, and the feeling that you can't do all this stuff that you're being asked to do. And so there comes a time when you need to prioritize, especially with these kids that are similar to Kimball with a lot of medical complexities and a lot of different therapists and doctors and appointments. That way you can prioritize the therapies that are the highest priority for you and your family. What matters the most to you. When we have done that, when we have looked at like how little therapy can we do, but still help him thrive. So that we can focus on actually doing the things that we're supposed to be doing from the therapists and really focus on the most important therapies.
I love how you bring up priorities because they change, they change from time to time. And so for everybody to just take a step back and say, What is going to help my child the most at this point? And if as a mom, you feel like I need more ideas, then it's okay to have more therapy. But if it's having a negative impact with your other children, with your, maybe your spouse, you're gone a lot. Step back, be mindful. Also be mindful of the child, like you said, because some kids get overwhelmed by too much therapy, because sometimes too much is too much for the child, not just the parents.
Madeline Cheney 12:47
Right. Can we move right along to that, behavioral communication?
Yes, this is one of my favorite things, I love my initial visits, my first two...well I love all my visits, but when I'm just getting to know the child. It's so fun. I talk to mom or dad or grandparents I've even gone in with a great grandpa. It was fantastic. He and his great grandson had the sweetest little relationship. And so when I go in there, I just look at the interaction, watch the child together. And what I tell parents on this initial visit is you need to be the Sherlock Holmes of your child. Now, that's one of the few times I say you need because this is a really fun thing to do is I am going to not just see my child I'm going to observe, to take something from Sherlock Holmes, I'm going to observe and that's what I'm there for. And your other therapists are there to help you see. Why is my child doing what he's doing? Why does he shut down when I take him to this therapy appointment? Is there too much noise? Is it too bright? Is it a bad time of day? Within your house, we're saying, Why does he not respond to his name? Why does he need to climb on the table and push everything off the table? All of these things are communication. And they all have to do with what's going on inside this little person's body. That's what we are doing together is figuring out why these things are happening, because then we can come up with a strategy.
Madeline Cheney 14:27
Right. And that even comes back to when Kimball is screaming instead of using the words that he knows for things and we are able to have a strategy to help him use his words. It comes up all the time, when you can see an issue that you want fixed.
Yeah. And you said a good thing about strategy because if my child gets on the table and pushes everything off, I have a strategy in place whoever your therapist is, and knows your child can help you come up with those strategies. Do I take everything off the table? Do I move the chairs? Do I pick him up off the table like a little surfboard under my arm and walk him across and have him sit in his crib for a while? There's just thousands of strategies. And it's so much easier for you as parents to have that already in place, so that you're not trying to figure it out every single time.
Madeline Cheney 15:25
Right. What about parents who already have a therapist that doesn't ask them these things about behavioral issues they want corrected? Do you recommend that they bring it up to their therapist and say, Hey, this is something that we don't enjoy happening in our family, when our child is doing this? Can you please help us figure out a strategy to combat that?
Yes, and I think parents can be proactive, because sometimes we get in there, like with me, in the whole stacking thing. It's okay if your therapist says well, you know, work on stacking, and this is a good skill. And your child throws food during dinner time, or they're not sleeping, or they take their clothes off and they're in public. If those things are your priorities, it's okay to tell your therapists. I'm not really that interested in working on this. Can you please help me? Or can you give me some resources that will help me know how to help him stay asleep? Or how to enjoy meal time with the family? It's okay to ask for these because I think sometimes we therapists get stuck in our routine of what's next developmentally rather than what is your family need right now. I will help you.
Madeline Cheney 16:46
Right and it personalizes it, and it gives you an incentive to do what your therapist is telling you to because you care about it a lot.
It's like kids, if your kids are motivated to do things, it's much easier and it's just like, as parents If you're motivated to fix a problem or understand your child, and then it's going to happen more readily.
Madeline Cheney 17:07
So Lisa, I'll ask you with our last couple of minutes. You are such a supportive therapist. We love all of our therapists, but you have this way of coming into our home and uplifting and helping us feel hopeful and loved. Can you please share some of that love with these parents listening? I would love you to direct it towards those of us that are struggling, because most of us are. So these parents I feel overwhelmed and are struggling with the tasks they're given. And with this child that is so complex, what would you say to us?
Well, the reason I do this is I have such an appreciation for every single family, no matter how overwhelmed or how rich or poor or how big or small, their houses, how clean or dirty, I just don't judge anybody because I'm always in over my head as well. And so I would just encourage parents to feel good about what you're doing as a mom feel good about every interaction you have, I don't care if you get mad at your child, we all do, but feel good that you know your child, and that you can repair things. If you have gotten mad, you can snuggle, you can enjoy them at the park. Some kids are really hard. And so instead of thinking of yourselves as a therapist, I would say if you can laugh with your child, one or two times a day, that day is a success. And so, set the bar so that you can achieve your goal. And I would say you can usually achieve your goal if your goal is to enjoy your child to laugh, to have a few joyful experiences now and then and that's enough. Another day you can do more than that. But if you are stuck on a day where you think I can't do this, you're not alone. There's a lot of mommies out there who feel the same way. And find some little glimmer in which you can enjoy who that little person is, who you've been given.
Madeline Cheney 19:20
I love that. Thank you so much, Lisa, for joining us today and for uplifting us and educating us. I really appreciate your wisdom.
Thanks for inviting me, Maddy.
Madeline Cheney 19:34
If you are a professional and you have a message that would be impactful on the show, head over to my contact page on TheRareLifePodcast.com. If you know someone that fits this description, please send them my way. Taken from our conversation is a clip about autism and red flags to look for if you suspect that in your child. I realized later that that part of our conversation is not relevant to enough people to put it in the actual episode, but I did take that three minute clip and put it in the show notes for this episode episode 4 on the website, therarelifepodcast.com. You can hear all about Kimball's diagnoses next week in episode 5.