Kori: Welcome Back to ask an autism mom live. I am Kori. You may be expecting Jenn, but I am filling in for her this week and you can join her usually every Monday. Live on Facebook to learn tips, meet other parents and to share your insights. Today we are sitting down with Jeannine from tumble into love and we are discussing sleep issues. So I just want to welcome those of you who are watching live on facebook or listening to the podcast on iTunes or on Youtube. If you want to get alerts to join live and ask questions live, you can visit Lakikid.com or lakikid.com/live or type the number "5" in the comments. So I just want to give a quick welcome to Susan. Hello, how are you today And if you have any questions for us, please leave them in the comments and hello to Morales. Hi Tanya. So before we get to our guest today,so if you're just joining us in, good morning, Jessica, you're just joining us. You are listening to the ask an autism mom show and today we are doing a show on sleep issues. We can't wait to dig into this topic with you today, but first we want to give a huge shout out to our sponsors. So today's show is brought to you by lakikid.com and this month they are celebrating the launch of their new product, the write in chill weighted lap pad on Kickstarter. You're having a special launch party for May and you still have a chance to join the fun. Good Morning Kelly. Good Morning Jason. They are giving away three products each week and you can go to lakikid.com/trivia.Good Morning Kelly.

Kori Tomelden: I'm going to continue with our introduction, I guess.I apologize. I'm just running into some technical issues. If you can still see or hear me, can you just give me a quick comment Okay, so we are on fine. Thank you Jason.

Kori Tomelden: So our guest today is, Jeannine and she is a seasoned healthcare professional and special needs mom. Turned blogger after her daughter was diagnosed with global developmental delays and later autism spectrum disorder, Adhd and intellectual disability. She quickly learned that special needs parenting required her to think differently. It forced her to let go of social ideals about raising children, modify everything and to redefine successful parenting. She shares her experience with special needs parents so they too can live their very best lives on her blog tumbleintolove.blog, a fierce advocate with 30 years in the healthcare industry. Jeannine has always been passionate about helping vulnerable populations, including seniors, children and the uninsured and LMSW. Janine holds masters degrees in both social work and health services administration with a minor in Gerontology. She is a member of the state society on Aging of New York and the International Society for Autism Research. Hello Janine.

Jeannine: Hey, how are you Thanks so much for having me today. I'm very excited to be here.

Kori: Hello Susan and yes.

Kori: Yup. I'm having some tech issues you guys. I am so sorry. Hi Amber. You know what, brandy, you know what it is. I can't see or hear our guests. Okay. Thank you Miguel. So, Janine, if you want to just tell us a little bit more about yourself.

Jeannine: Sure. Thank you so much. I'm super excited to be here today. You know, as a special needs mom, sleep issues were at the top of my list for sure.To solve and you know, first and foremost, I'm a wife to Scott. And as you mentioned mom to two beautiful girls ages 12 and eight. So, you know, we've got some special needs, from autism spectrum disorder to central processing, to Adhd and so on and really struggled with sleep issues for several years. So, you know, just really excited to connect and, and happy to be part of the podcast today and hope I can help some other folks as well.

Kori: Okay, great. And can you just tell us how do you sleep issues impact family

Jeannine: Oh my gosh, yes. So, I would just start off by saying that if you are out there and you are experiencing sleep issues in your family, you are not alone. You know, research tells us that nearly 90% of parents with Kiddos who have special needs, experience, sleep difficulties. So if you're part of that 90%, you know, the profound impact that sleeplessness has on your family, on your child, on you. And just the day to day life, you know, that exhausted feeling existing on coffee and so on. You know, as I mentioned, our families struggled with sleep issues first for many years. There were times when my oldest daughter would wake at 2:00 AM for the day she was ready for the day. My husband works nights, so he would come home at 3:00 AM and kind of take over so I could sleep for a couple hours to get ready for work the next day.

Jeannine: And then for our youngest daughter, you know, it just meant broken sleep. So she never really, you know, it interrupted building those good habits of sleep. So it did impact everyone and sleep of course, just from a health standpoint, it just, it,'s such an important role in overall health and wellbeing. Getting that good quality sleep not only can improve your quality of life, but how you feel during the day is often a reflection of how well you've slept at night and lack of sleep can impact how well a person can think and learn and work. So it's really, it's really important. And then it doesn't just impact the mental health, it has an impact on physical health, things like weight gain and diabetes and kidney disease and stroke. So it also plays an important role in fighting off infections. And NIH the National Institute of Health talks about our children and teens who don't get enough sleep often more times feel angry and impulsive or have mood swings or feel depressed. So for our kids with special needs, some of which already struggle with impulsiveness or other, you know, behavioral concerns, it can make those more profound. So it's super important to get good sleep for sure.

Kori: Okay. And how much sleep does a child actually need?

Jeannine:So that's a great question. You know, the amount of sleep does vary from person to person, but as a general guideline, the American Academy of Sleep Medicine and the American Academy of Pediatrics kind of agree to a framework. And so for infants aged four to 12, it's 12 to 16 hours a day. And that includes naps,for kids aged one to two years, our toddlers, 11 to 14 hours a day. Children age three to five years, it's 10 to 13 hours a day. And then children age six to 12, it's nine to 12 hours per day. And I want to pause here because that six to 12 age group,I don't know about you, but for my daughter when she got around that 10 year olds, age is when she started, you know, pushing back a little bit more on going to bed.

Jeannine: Mom, you know, Susie can stay up until 11 o'clock. Why can't I stay up until 11 o'clock and here's what I would say. A lot of districts and I know my own are starting middle school earlier and middle school from a time standpoint usually starts, you know, an hour and a half earlier than elementary school. So the opportunity for sleep has shortened. So we've got kids going to middle school perhaps in fifth grade instead of six. And we've got, you know, earlier start times. And with that, we really have to be thinking about that 9 to 12 hours cause it's getting harder and harder to get. And then our teens, 13 to 18 years, our teens is 8 to 12, eight to 10 hours a day. And then adults, it's,seven to eight hours a day.So I'm just making sure our technical issues are,are okay. But you know, our pediatrician I say was always super quick to share the chart with us.but not always so quick to offer some intervention. So certainly the guideline is great, but I know with working with my children in particular, we really needed to go through some real specific kinds of interventions to be able to really kind of rally I guess our family around making sleep so important and getting successful sleep.

Kori:Can you tell us how do you blue light screens help?

Jeannine:Yeah, great question. So first it's important to understand what blue light is and where it's coming from. It's coming from all of our electronics from fluorescent lights to our TVs, to our cell phones, our computer screens, tablets and it's a short wave length, so it actually means that that produces a higher amount of energy and it's been linked from a research standpoint to ice strain, fatigue, headaches, and then most important for today's topic, sleeplessness. So with so many great learning apps at our fingertips and schools incorporating more screen time into learning, it's impossible to evade all of blue light. But there are some things we can do to minimize. So blue light blocking screen, it's just designed to block a good portion of that light. That's coming in.

Jeannine: And again, people should look for screens. I tell people that are certified and that black, at least 90% of those blue rays coming in. And then something else that can be done to kind of incorporate, not just having the screen but also supporting that is having setting what we call an electronic bedtime, a time for all electronics to go away. Good two hours before bedtime to kind of stop the impact of blue light and that's helped our family a con a considerable amount in addition to having the blue light blocking screen.

Kori: Wow. Two hours. I never would have thought. And can you tell us what you use to help your daughter sleep?

Jeannine: Sure. You know, it's interesting when you talk about two hours because electronics and if you've, I've got moms and dads out there, I know this they seem to be calming, right So, you know, but what I found over the years is that calm is more of a hyper focused state and you know, their minds aren't shutting off when they're in front of those screens for sure. And so I didn't really realize until I started to observe and log sleep habits that a lot of the resistance to going to sleep and inability to stay asleep seem to happen when we were using the iPad right up until bedtime. And so I also noticed that it happened more on the weekends when there wasn't as much structure like we see in school.

Jeannine: So it kind of left me with two questions. So when we talked about what helps while we did some observations and you know, really tracked down a sleep log and it really left me with a couple of burning questions. One would, did the lack of a consistent schedule like she'd have in school, did that impact the sleep And then secondly, what a reduction in iPad time before bed help. And so we did test both of those theories by creating a visual bedtime schedule and then doing that electronic bedtime and checking it on a sleep log. And we found that it absolutely did help in addition to some other things. So we took a look at the environment.Was the bad comfortable, was it at a good temperature, but most importantly, what did she like So her favorite for color is red and out.

Jeannine: And we purchased red pillows and red sheets and red comforter of the things that she liked to make the area comfortable. We don't do timeout in the bedroom, so when we're needing some quiet time, we're finding somewhere else to go. Particularly when my daughter was much younger, we didn't want to associate the bedroom with timeout. So we wanted it to be a positive experience. You wanted her to look forward to going to bed at night. We did a lot around diet reducing overall sugar intake and dyes and less processed food and have been doing a gluten and dairy free diet for quite some time. We did go the medical route as well. We did a sleep study to find out that she had some mild sleep apnea. So when we treated that, that also helped us get some better sleep. And then we use some sleep aids, like a weighted blanket, which is really helpful for anxiety. And then we also use a pillow with music. And it's music that's designed to comfort and calm. So she really seems to like that as well.

Kori: You know, and we found that with our family as well, that when we didn't have the routine on the weekends the sleep was greatly interrupted because you know, our kids, they thrive so much with the routine to begin with, so that when you're taking away like this one really important aspect, it just kind of sets everything else up.

Jeannine: Absolutely. Absolutely. So, and it impacts sleep just like everything else, you know. but having that schedule and making it consistent even when we're not in school is super helpful for us.

Kori: Yeah. Okay. And finally, what is this roadmap to sleep.

Jeannine: So Our roadmap to sleep it's a free download. It's one page, it's a one page guide that really takes everything that we've been working on for a few years to kind of get better sleep as a family and puts all the steps in one page so that anyone can customize it, follow it, and try the different steps out to achieve better sleep as well. And really it's got seven key components to really help folks get through. I'm kind of all the trial and error that we've been through and you know, first and foremost it talks about observation and tracking. And there are some tools that you can download. We tell people track for at least 14 days. You'll be amazed at some of the you'll make and some of the things that she didn't even realize until you write it all down and look at it as a whole.

Jeannine: And definitely, you know, it helped us a lot. We looked at food intake, we looked at transitions, you know, transition from whatever they're playing with to bedtime and looked at a sleep log. Working with a medical professional, as I mentioned before, is huge because if there's heartburn or sleep apnea or if you've got children who are using ADHD medication a stimulant medication the timing of that is super critical to achieve good sleep. So you're certainly from a medical standpoint you can get some good feedback, and then analyze. You really need to look at all that data as a whole and say, Geez, what days did sleep go well, and is there any constant thread that I can pick up on or what these, did it not go well we saw that when it wasn't going well, we were using the iPad right up until bedtime.

Jeannine:And I was like, oh Geez, let's try that. So that's super helpful. And then just some ideas for making change manageable. You can't change everything at once because you won't know. You know, it's really hard. So pick one or two small things. Sleep aids there's tons of non evasive noninvasive sleep aids like weighted blankets, like dream pad type pillows or, or pillows with music that you can try. They either work or they don't work. But there, there are definitely we found a few that are really comforting for our daughter and then this is huge positive reinforcement. So if you've got a schedule and you're following the schedule, let's reward the Kiddo for following the schedule and make sure that that reward is super meaningful to them. Something that they're going to really enjoy, something that that's going to motivate them.

Jeannine: And that's really how we were able to, okay, we're not going to get up at 3:00 AM and we're not going to get up at 4:00 AM, you know, 6:00 AM we, we kind of was our goal was our original goal. Like, okay, we're going to be in bed til 6:00 AM and over time, you know, we did it in 15 minute increments and then we'd meet the goal and then we'd set it 15 minutes. I had more and more until we got to that 6:00 AM. And then probably the biggest thing that I tell people is get support or find your tribe. You mentioned that LakiKid has a great support group or a group or Facebook group that people can join, find a Facebook community. There's lots of them. I know we've got one as well, but you know where you're going to find those like minded parents who can offer support and just sharing your experience because that's huge.

Kori: Yes. Yeah. Interesting to that. You mentioned the positive behavior, the positive reinforcements. This is something we also touch on in our upcoming behavior class. That's going to be like a five week masterclass to talk about behavior. And the reason I would bring that up because I would wonder how behaviour are also
affected by a lack of sleep and just how much that impacts what's going on in terms of triggers.

Jeannine: Absolutely. Absolutely. I mean, when you think about behaviors or meltdowns or I just think about myself I'm way more miserable when I don't sleep and I'm a lot more touchy when I don't sleep anymore. I guess it does exacerbate any kind of maybe their behavioral concerns or, you know, even sensory. It just heightens everything when you don't get enough sleep. But it does definitely have an impact for sure.

Kori: We're going to take a few questions from the audience. We have, well, Chrissy says that she does what she calls a shutdown and wind downtime. So that happens about one hour before bed and Caitlin said that she has problems getting her son to go to sleep. Then after he's finally in bed, he starts crying in the middle of the night, almost like clockwork. What can we do how would you help Caitlyn like what kind of advice there.

Jeannine: Yeah, I think a couple of things. Certainly on the roadmap to sleep. You can look at some of the environmental kinds of things are we comfortable enough and then kind of look at the process of what you're doing when that crying starts. So are you laying next to him is he expecting that and then when you don't, the crying happens or you're comforting or is there a special pillow or animal or something to suit but in terms of going to sleep and staying asleep before we went through this process we did talk with our doctor about the use of Melatonin and what was recommended. And of course you want to talk with your doctor, but what was recommended to us was using a long acting or you would take it to help get to sleep, to calm the mind first and foremost. But then it would be a time release over the night to be able to keep your child asleep. And for a while until we kind of got all of the behavioral and environmental and all of those things in place. It was super helpful for us to kind of get that sleep through the night.

Kori: Which also ties into a question from Susan. She says that her daughter has trouble falling asleep without a sleeping pill and she would really help to get her to sleep without a pill. Has Melatonin, does not work. And I believe you had mentioned that as well, that Melatonin does not work for all kiddos.For our kids don't, my daughter is one of them as well. What can we do It can, would you recommend another natural supplement or can we try, we've tried lavender essential oils that's at least helps get to the calm with the staying asleep part. We're still troubleshooting.

Jeannine: There is, so magnesium is another have either foods with magnesium. So I know on the blog we've got foods that naturally promotes sleep. But there's also, I believe it's called natural calm and we get it at our local health food store and it kind of tastes a little bit like lemonade. So I know that that's definitely something that's calming. It can be given warm or cold. So we've, we've done that and that's definitely helped. That will also though just be prepared because I can,it will keep your child regular. So if you have it all at once or the system's not used to it, you might want to be prepared for that. It does have that impact. But it actually made me think of some other things when we think about medically,my daughter suffered with constipation for a lot of years in stomach aches until we figured out gluten and dairy just weren't helping her. So there are so many facets to look at. There's no one easy answer to kind of get to the bottom of sleep problems, but all of those medical things or any discomfort certainly can make it more difficult as well. But the natural calm is something that that might help.

Kori: Okay, great. And we have from Jessica and she says that her son sleeps pretty good. She just has a hard time with him going to bed every night. So she thinks that he hates sleeping alone. She does read him books and she's been told that it's good to get him tired out before bed, but other days it's not easy to get him tired outs. That's her struggle right now. Otherwise, he is a pretty good sleeper. It's just getting to that initial falling to sleep phase.

Jeannine: Yup. And I think having that calm down period or that turn off time to do something quietly certainly does help toward that. Particularly a lot of times kids that are on the spectrum also have ADHD and it can be very hard for our kids to turn their minds off. Sometimes when my daughter even sleeps, I'll hear her talking in her sleep about what she needs to do for school the next day. It's like it never shuts off. So definitely having that downtime beforehand helps again melatonin for the folks that it works for the natural calm sometimes before 20 minutes before bed can just help with that initial calming to get folks to sleep if they're good sleepers through the night. That might be another suggestion as well.

Kori: Hey, yeah, we have, let's see, comment from brandy. She said that her son is 11 years old and they've tried everything from medicine to cutting out all red dyes. They switched to sway milk. Nothing seems to be helping and it's affecting the schoolwork and their day to day life. So it sounds like they're already on the right path to tackling the root of the problem. What is it now Just more of the keep investigating.

Jeannine: I think on one hand it's investigating. So have they looked at all of the foods that could be causing disruption, but I would say at this point if they haven't request a sleep study, so I'll tell you just a little bit about what to expect where we went to a place where she had to sleep and they do attach all those little wires. But they, it was a double bed and they allowed me to sleep next to her, which was really nice. And then I created a social story ahead of time just to make sure that she was comfortable. And I'll tell you that's where we found out now. She wasn't a kid that snored, she didn't particularly sleep with her mouth open. I would not have expected sleep apnea. And they said, well, she has got mild sleep apnea and when she was medicated for that, it didn't solve all of our sleep problems, but it definitely helped somewhat. So again,I would say, Hey, if you've done all the other things reach out and say, Hey, I think ask your pediatrician to refer you to a specialist for a sleep study.

Kori: Okay, great. And Melinda says,that her son struggles with sleep and he likes to sleep sitting semi up. She could never get him to sleep laying all the way down as they have been using a compression sheet. Now it doesn't matter how, like their position for sleep or is it just what's going to be comfortable for them Is there.

Jeannine: Yeah, I mean, she's, from a medical standpoint, I don't know the answer, but here's what I would tell you. Especially in the early days, we would sleep anywhere, any way anyhow. if that met in the middle of my kitchen floor, if it meant sitting up, if it met on the couch I would say some sleep is better than no sleep and even setting up if that's how he's comfortable, go for it. But again, that's my philosophy as a mom. I don't know if there's any medical research behind that, but from a very tired mom sleep when they sleep. Anyway sleep.

Kori: I was going to say, I would almost come to thank from personal experience with the sitting up, it's there could be something going on with sinuses. So I would Melinda, if you have not already explored options with your pediatrician, maybe talk to them about possible sinus issues or even with the acid reflux. Because if they're laying down then that's going to be a lot of pain right in here. But if they're sitting up then at least he's got and our last question, I believe this is from Jason its what is your suggestion for a bedtime routine?

Jeannine: I think it's, so first day kind of starts out with when are we going to shut down So two hours before our schedule is we shut off electronics. Then we take a shower or a bath. Then after that kind of why my girls have long hair. So when the heroin, the hair is drying it's snack time and we play a quiet game, right My kids are getting players so we'll do something quiet like that or color, but something we do together, maybe read a book. And so we really map out what's going to happen in that two hours up to bedtime. So in terms of a bedtime routine, I think the critical point is that transition piece where we're shutting off, but we're going to replace it with something fun. And my kids love having the one on one time with me and my husband for sure. So you want to be sure that you enter it slowly and one thing at a time, but it'll really help once you're doing the positive reinforcement with it, your kids are gonna love following that routine and they'll become accustomed to it. And especially if you're getting their input on the kinds of activities, quiet activities that they'd like to do up into bedtime.

Kori: And we have a thank you from brandi. She says, thank you so much. She got a weighted blanket and that seems to add about half an hour extra. She will be calling his doctor as soon as this is over. She has her notes ready to go over with her husband. She's very, very helpful. Thank you again. I hope it all goes well for you. Granddad's cost.

Jeannine: Yes. Yes. Thank you. That's awesome.
Kori: I thank you all for your patience with my little tech issues here. And thank you again, Jeannine, for sharing all of your tips, especially love that sleep roadmap and the blue screens. Wow.
Thank you for joining us today. Have a great day. And every child brings good luck.