Hello and welcome to the if we knew then podcast I’m Stephen Saux and I’m Lori Saux and this episode is the first of a two part conversation about physical therapy join us via Skype is Natalie Spiteri really a gifted physical therapists who was Liam’s primary physical therapist during his early intervention time and in this sept so when a constraint on what is physical therapy what is early intervention therapy and what can we expect from the services that happened prior to our children turning school age now thanks for for being on our podcast I’m happy to be here to talk to you guys thank you for having me maybe can tell us a little bit about yourself so I’ve been a physical therapist for almost eleven years now and I’ve been working in pediatrics for ten years over the years I also became a what you call in the physical therapy world a board certified specialist in pediatric physical therapy and I did that because I really care about working with pediatric patients and really making sure I keep up with my %HESITATION continuing education so I give my patients the most up to date you know treatments and %HESITATION I’ve also had experience working initially and early intervention so working with patients as a student babysitters zero to three years old in their homes and then I also have experience working in an outpatient setting with zero two eighteen year olds and now I work in a school based setting working with three year olds up until twenty one year olds not only can you just define for us what is physical therapy so physical therapy it is therapy that focuses on what we call gross motor so focusing on big body movements so in the pediatric world that’s working on helping a child move better in terms of either movie helping them crawl helping them learn how to state helping them learn how to use their big muscles to move their body in the world so the physical therapists know comes and works at the family and teaches the family on how to get a change this kiddos world around to get the most out of them and help them learn and progress their milestones and use their body in a way to help them move around SO zero three may be you helping them approach obstacles in the household but then when you go into the sector of of education with a three year olds on your working on them working their way around school I guess yeah when you when you hit the school based H. S. a lot of it becomes accessing big environment so walking outside walking around a classroom working around obstacles and also what we call it a dynamic environment we’re now it’s near not in a house where you control all the variables now here there’s other students around there’s bowls there’s playground equipment the it’s a lot of movement happening and so at school based you you do a lot of treatment outside and making sure that students safe as a safe getting around their environment with as little restrictions as possible and that’s a really big window to go from zero to you said twenty twenty one right that’s that would better school that’s three to twenty one yeah in school like and students with special needs can receive services up until they turn twenty two so on the day they turned twenty two then services would end and because we live in California our experience was that we receive services through regional center that %HESITATION took services over from birth till three years old but at three years old then services received from the school district and you’ve actually work through regional center and now through the school district especially since I started in early intervention and then went to school base it was nice to have that kind of slow because I knew what all these kiddos had come from and what their experiences and now how would be different coming into a school environment and as an early intervention a physical therapist what do you feel is the advantage of of having early intervention with physical therapy there is zero to three age period is so critical because that’s when so much growth is happening physically but also cognitively and you really want to make sure you hit this window and try to teach them as much as possible because that’s when they will learn the most and if you know if it’s free we I have seen kiddos that come from outside the country that didn’t receive these services and you see such a big difference if they are coming to school never getting therapies how much delay there is so it’s a critical period for them to learn the gross motor skills that PTC provides but then also the rest of the team held owed occupational therapy provides fine motor and then speech and then also that early interventionist is also very keen to do the play bass side of things and because they all work together to work on all that development that’s very crucial during the zero to three year old period if I remember correctly one of the first things that you and actually I think it was the reason that you were we were approved to get the physical therapy %HESITATION from you in early intervention was that Liam wasn’t rolling over that was one of the the milestones that were challenging him that he and then you came in to help him to learn to roll over yeah and then for my experience and early intervention you know Liam just being a preemie also would have qualified him because he would have been delayed from the start because he was so premature in now I mean I’m not sure how it is now but when I was treating it early intervention it’s Christians and even straight from the hospital of the of a premature patients or you know maybe somebody with a known syndrome likely M. with down syndrome or any kind of genetic syndrome that I even at the hospital they get the ball rolling to start the referral process so they can get services as soon as possible that’s one way that I saw a lot of my my pediatric patients was they got referred straight from the hospital or I got some later like maybe like lamb if there you start noticing delays and milestones and then they get the referral for therapies in the home and now you do A. as far as any of the the physical challenges that you help children with it’s a big range of different delays and challenges but as this is a podcast gearing towards our experience with down syndrome what is your experience with down syndrome kids with down syndrome and some of the physical challenges that they and door and then also if you could tell you know a little bit about how parents and care givers can support those challenges and help that child gets strong said the biggest thing because the kiddos with down syndrome word the big my biggest population for my in home therapies when I did early intervention and that the biggest hurdle that you have with that patient with down syndrome is their muscle tone went on you know you have low muscle tone their body has to work that much harder to move and it was muscle tone is the main thing and also motor learning so %HESITATION you know somebody’s ability to learn a new skill %HESITATION those are the two main things that you know cause delays with kiddos with down syndrome and I there was a huge range even you know even just looking at my patients with down syndrome there was a very big range of when they would reach milestones but I guess if you if you just look I’m trying to think if you look at every every milestone has different things they need to work on but the key is to you have to work out a lot more than other kiddos I don’t have that low %HESITATION muscle tone so you know for Liam you know we did a lot of stuff on his stomach you know more than I would make another kid %HESITATION do that didn’t have low muscle tone because we really had to push him to get his course stronger to be able to move to the next milestone and also on the motor learning and there’s a lot of repetition involved because it would take and kids with down syndrome a little bit longer to acquire a new skill a little bit more practice and so it was a lot of repetition and a lot of talking to you and Steven about what do you do when your daily date to continue to heavily I’m working almost all day long and that’s one thing I try to do it on my patients that I try to overwhelm and give you about your homework assignments I mostly try to say okay you know will be M. S. sitting up for meals this is how you can make it harder for him or you know the M. S. playing with a sister Sophia here are some ways you can position him during that play time are you know Liam is standing this way here’s different ways you can challenge is standing so I think the main advice is that you do kind after a corporate any activity throughout the entire day that you can’t really just let them relax that much unfortunately I do you guys remember that how much Liam how busy he was ever all week with all the therapies yeah he had a lot a lot of therapies I remember talking to you early on about muscle tone and low tone when it comes to down syndrome and and in my mind I was taught when you want to tone you would just work out and then great you’re you’re telling your muscles but you kind of expressed to me the importance of just what Liam it wasn’t something I was just going to go away it was something that he he need to work on all the time and more than and then than typical kids to then try to raise that bar but it was going to be there he just had to try to overcome overcome as much as he could is that correct yeah because as you know are are resting state of our muscles his was a little bit looser you know kiddos it down to just have a little bit looser resting state so they have to kind of get over that hurdle and then also work on getting stronger like any other kid away to have to learn a skill but that let me ask you because I know tone is %HESITATION load low tone is something that you know we heard a lot about when Liam was first born and you know and and any reporter any test that’s done on him can you work hard to overcome or lesson it’s a factor that you can’t necessarily like fix like her cure low tone but you in order to lessen its effects yeah it’s a good way to put it is that you do have to make sure to continue working out and strengthening tet minimize the effects that low tone has on somebody’s body so you know somebody for example like anybody with loose joints you know if they’re you know they have lax joins if they never work on that they’re gonna have pain but if they work on their strength maybe they’ll minimize our pain but they’re always looking to have those loose joints let’s say Liam you know we you know he wanted to do running programs okay well we have we got to really make sure we keep you strong because we don’t want you to get injured and just like anybody taking on any new activity you got it maintain your body if you want to make sure to the activity safely and continue growing can make sense and also D. coming with low town is is there also some inherent extra flexibility or or looseness in in joints and ligaments is that something or is that separate I have to look %HESITATION specifically I can’t member of like if kids without and also have the loose joints but they you do have you know that everything is Slusser so I think yeah they definitely because of down syndrome are more flexible and I think that has to do with the low town as well so in the end that’s what you don’t you basically want to keep strengthening to also you know help movement but also you don’t want them to get injured either yes M. and walking on a walk ins a really big deal for for parents I know that the the milestone came later for Liam than it did for Sophia can you can you talk a little bit about walking as it pertains to physical therapy and down syndrome yeah what it what I was looking I was doing some major Fraser talking you guys looking at you know for parents of kids with down syndrome I want to always say no try not to look at that you know the age that kids should be walking but look at the progression of his milestone so you know with Lee and be a you know every time he did any milestone K. he rolled all right well now we’re gonna start working on sitting okay sitting let’s get to crawling and I was always moving on to the next step %HESITATION walking was always the biggest variability I had with my kiddos with down syndrome that the most common did you see the down syndrome start walking I think earliest I’ve seen is around eighteen months and then I have unfortunately seen kiddos that starts school that are still not walking so there over three years old and still haven’t achieved that walking milestone so it is a big range though I have noticed that the ones that aren’t walking by time there are three they may not have received as much therapy or as efficient physical therapy S. kiddos that started walking earlier but there’s also degrees of muscle tone as well some of my kids with down syndrome have much lower muscle tone than other ones which leads to a little bit of delays because we that we have to work out much more on their strength it takes longer for them to get strong enough to be able to sustain that walking position personally just to kind of give parents out there an idea out sometimes we ought we want these benchmarks I mean that’s something tip of that typical parents do as well as a look at other kids and say oh how’s my kids lined up with that K. well Liam Sophia sorry article child started walking about thirteen months fourteen months I believe and Liam I think it was about twenty five twenty six months so if you think about it is about double the time and of your sand that’s probably about right in the middle of of your experience with with children douses him and Liam had E. T. even in the neck you like from the second weekend of of life so I think just to keep perspective how parents are you know how parents always wonder house the house is going for me has gone for my child that’s some to keep in mind and I also researched you know before on the national down syndrome society so N. D. S. S. dot org and I am about a look at early intervention on there they even have a little grade with the milestones and it’s even a huge range on this page where they write for walking alone in the rain just one to four years old which is not super helpful for other people but yeah I think talking to other families like yourselves for people to get an idea when their kid or start a walking would be helpful and also you know helping families you know even before that you know if you’re if you meet somebody whose child isn’t walking yet we say what are they crawling because whatever age somebody starts crawling gives an indication of you know how much longer will it take for them to start walking what is that window Natalie from crawling to walking typically so like in a in a typical kid all right they start crawling around eight months and then they start walking around twelve to eighteen months so it’s a I would say it’s about four to six months %HESITATION between crawling independent walking in a typical kiddo so I would say maybe six to eight months in a kiddo with down syndrome it was definitely I think a shorter period between crawling and walking than it was between you know before they started calling that makes sense when they started crawling their core starts getting stronger faster and then but you start really pushing carts walking yes so like if we found that Liam was crawling about it took him about twice as long to learn that in comparative to our typical child Sophia then when he starts walking it may not be twice as long or or that gap in between crawling and walking may be shorter than you’ve seen then that may be shorter if I need a kiddo and let’s say they’re almost two years old and they’re not crawling yet then it’s it’d make me think okay we’re we have a lot to work on if I’m this kiddo is starting to crawl at two years old then there may not be walking until after three years old because I’ve actually I’ve we’re already dealing with a lot of low tone and delays at this point it’s gonna take a lot longer so her parents hit you know I understand that Chad to really focus on the next milestone verses you know the kids not calling but the thing about walking they really have to focus on the crawling it’s not that they’re not going to get to walking and less they push the calling cancel early think about as a parent you because you you do always want you want this to happen and you just have to be patient and understand that it’s not about walking it’s about each step toward there and that’s going to be true for the rest of your life in the %HESITATION only kiddos in early intervention they did you know they did eventually almost I don’t I don’t think any of my early intervention patients were not walking they all were walking by the time they were graduated from early intervention with me anyways and that’s it that’s a good segue to my next question because you had mentioned that the early intervention in the lack of early intervention has a impact so for those parents who didn’t maybe receive the early interventions for their child like if the physical therapy earlier interventions and their child is delayed in the crawling and walking what are some of the things we can say to the parents to give them the power to have input if they’re not getting physical therapy I really push even as you know as because now I’m in school and I meet parents that their kid to get therapy I push these parents to really bother their pediatricians their pediatricians are the gate keepers and they really should be advocating for their patience and %HESITATION if they haven’t got an early intervention then you have to push that pediatrician to get a referral out to at least get out patient support you know get find somewhere that you can at least take your child for physical therapy if there’s no if there’s too much red tape or too much work to even get early intervention but to push the pediatrician to figure out how you can get outpatient services and for parents who already have a PT for the child what should they look for in this person and also what should they do if they don’t feel like it’s a great fit or if they’re not doing the job that they feel like should be done I would tell parents first if you have a PT already really make sure that physical therapist is talking to you about your concerns and incorporating you and all the decision making suppose a parent like you guys you you have a physical therapist at cons and you’re trying to decide is this person helping you know Liam as much as possible and as as we had talked about I was maybe the third physical therapists or second that met you because the ones before me no we’re not working as well with you guys as a family unit because if that therapist is not considering your needs as a family and you know the answer you’re not them but you’re you know that child’s needs in the home and not take into consideration what your life is like and what his needs are going to be that it’s not going to be a good fit and they may not help you reach the goals that you need to reach that’s always key that that that therapist talk to you first and incorporates all your concerns and doesn’t ignore what you want them or your child to achieve now when we talk about early intervention in California we go to the regional center but if you live in another state where do you go to find these therapies across the board it’s called early intervention everywhere so if you say early intervention in other states don’t know what you’re talking about but there are early intervention services that should be provided and then the somebody’s pediatrician they they should be well versed and get being referrals to early intervention services I don’t know people know like out there’s a log it called I. D. E. A. individuals with disabilities Education Act and that is a federal law that mandates that states have to provide early intervention services so it’s a right and if there were if they’re having trouble getting their pediatrician to advocate for them as theirs they didn’t they would you would you suggest that then they reach out yeah I would say the best thing is probably Google early intervention in your county wherever you live C. early intervention Los Angeles county or wherever and something should pop up about the county services for early intervention that’s the best thing as a Google early intervention and whatever county you’re in but that’s the worst case and best case scenario is you your pediatrician supports you and advocates for you and your child and and help you get on that road yeah especially supposed to find out before you’re you know you’re pregnant and you find out before your child born that they have down syndrome and you find that pediatrician before your child born that you should maybe already get you can get the ball rolling before they arrive and start make sure that the attrition is aware about the diagnosis and about the referrals that you’re going to be asking for and so they can help you ahead of time because I think that’s the big thing I’ve noticed is when I see kiddos and they you know just charged and that nobody talked to them about it and I’m seeing them now is a ten month old and no one you know they were very late to get the referral so I would recommend that as well well we did not know Liam what had downside until ten days after he was born and then when we did find out there was one the first things that was brought to our attention was regional center that’s what was told us so I think having that actual physical piece of paper or a diagnosis of down syndrome it does open the door at least the medical professionals should know Hey this information is to get to the parents which honestly it is something that we’ve talked about before that that’s the that’s a good side of you know some of our challenges that we had were just we had a doctor who had really pushed pushed us to get testing that we didn’t want to get done and %HESITATION and dad always wasn’t left in on easy feeling with us why this why this pressure why this negative any of you that was really put on us but I think that’s a really great gift to be given is that that yes you you you could start to line things up for yourself and your child and that’s that’s actually I’m I have to call it because that’s a great moment for me of I get an aha moment right LOL okay well I don’t and some of that pressure is taken off of you know like do you wanna know why do you want to know that the the down syndrome diagnosis early you know that there’s reasons for it right and sometimes you go well it’s not gonna matter either way if I know that the child has down some are not to continue this pregnancy right that’s one way to look at it but the other way is you may want this and this information so you can start setting things up yet U. K. N. empowers you that’s it that’s great because it’s not always presented like that both pregnancies it was presented in a different way to me but that is a that’s a great gift that parents can have is when you have the diagnosis thank you not only that you can start to line up to make sure that your child is taken care of which I I absolutely love that and now you talked a bit about walking but is there anything you want to add about it because that no that’s a big concern for parents %HESITATION maybe can I talk about early intervention therapies and and and how it pertains to walking for families that are receiving early intervention I would say once the big thing to push you know walking in your home but then you know once somebody starts walking I always encourage let’s move out of the home because just like any other kiddo down syndrome or no down syndrome you know you’re not just in your house hundred percent of the time so I just encourage families to talk to a therapist make sure you go to the park make sure you’re doing services outside of the home because that is you know the child environments not just the house and I think you know we took them to the park almost every session after he was walking and really pushed walking outside because that’s how you start working on balance and we took them before he was walking when she was dancing on furniture we forced him to start walking on grass outside yeah walking walking is a huge deal and it just because I know sometimes it can really wear on you and you can get discouraged that your child’s not maybe reaching the milestone or will they reach this milestone so I think whatever we can say that could support like what can they do at home that’s a like what are some of the exercises or toys or things they can do if you wanna if you wanna address crawling and then walking that would be great okay and first I can also tell you a resource I never use it because I was able therapist but there is a book that somebody released a physical therapist wrote it about gross motor skills and down syndrome and out a lot of PT’s use it and a lot of parents do so I recommend parents if they’re not getting any therapies to this book is a very it’s for parents and therapists and think it’s a good way to have pictures and examples that could talk about a lot more than I can stay here I’ll say some here but it’s called gross motor skills in children with down syndrome I just like this on Amazon but I think I’ll be a great resource for parents yeah I can go ahead I’ll put a link of that down the show notes for everyone to be nice and another good resource now because of social media is Instagram that my initial plan was to push Instagram showing %HESITATION you know how to work on physical therapy activities it’s just hard in the physical therapy round because you can’t really feel a lot of your patience so I haven’t been able to do that but I’ve learned that if you there’s a lot of families that post about their children with down syndrome it’s it could be good and bad because good yes you can see other kids with down syndrome but then you’re starting the comparison game and that could be you know for some families they don’t want to be in that comparison round but %HESITATION it can help you connect with other families with down syndrome and a lot of physical therapists are posting interventions on Instagram so I always encourage my leads to search you know hash tag you can write this to hash tag Peddie PTT P. E. D. I. P. T. N. anybody that hash tags that is posting pediatric physical therapy ideas and also for O. T. P. O. T. those people are sharing occupational therapy ideas to go back to your question about crawling I mean I’m always a fan of couch cushion do you ever I always work on out couch cushion and exercise balls and to get it if you’re just working on tummy time getting your kiddos face off the floor is key nobody if somebody has is weak and it’s a hard time holding themselves up they’re not gonna be happy just doing tummy time right on the floor I did a lot of activities holding kids on a ball on their stomach you know and you add the bouncing the moving and also now the world they’re more I level verses looking at the floor that helps you know work on a lot of neck and back strength and then sitting on an exercise ball is the next step working on their core strength those are the big things I would do to progress at to go towards crawling and same thing goes for that coach Christian you know on their stomach on a couch cushion sitting on a couch cushion because it’s a because the service that you can move around all those are really good things that you can easily doing your home to work on their core strength and when you say move when you say move around like you’re putting putting the child on the couch cushion is that so that just to kind of give them some relief make them feel like they are looking up a bit so they don’t they’re just face just isn’t on the ground the whole time and they’re just upset about it yeah so like if they’re on their stomach and their needs are on the floor and their their hips are on the couch you know if you’re leaning up on something so there goes in their trunk on the couch cushion and and then the third knees are on the floor that way they’re looking up a little bit more and they’re not their whole body isn’t just parallel with the floor and it’s also a Cush year than the floor and then also sitting them you know if you’re holding your child in sitting on a couch cushion it’s easier to bounce them a little bit then bouncing them on the floor and it’s a if you don’t have an exercise ball than you know catch Christian is the next best thing that you can try to have some movement in terms of bouncing leading them forward backwards left and right all these movements are encouraging you know their trunk muscles to began to work on their new holding their body in the middle and Natalie you have a newborn yes I have that what homesteading a four month old son to see how does how does that affect your your tummy time well you know I eat I would want to try for so long you know to do all the things I do with my patients to try it on my own kiddo and yeah he is actually working all day long because of me and my husband’s an occupational therapist and so he doesn’t get any breaks either because we’re both working on everything but I am trying to just incorporate into our day and not make it seem like it’s a lot of work for him well now it has been such a pleasure talking with you today thank you for having me every mistake around because our lessons are going to hear what you have to say about PT in the school setting on our next episode which will follow this one its up part two of our physical therapy conversation we’ll see you there.
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