8. Early Intervention – Interview with Caroline Bencze-Fernandez

Episode Transcript

Hello and welcome to the If We Knew Then Podcast. I’m Stephen Saux and I’m Lori Saux and today we are joined by Early Interventionist and Child Development Specialist Caroline Bencze-Fernandez. We were really fortunate to benefit from her expertise as a member of Liam’s early intervention team.

Caroline thank you for joining us today.

You’re welcome, thank you for having me.

Can you just tell everybody who’s listening a little bit about yourself and also what is early intervention?

My name is Caroline Bencze-Fernandez and I am an Early Intervention Specialist or Child Development Specialist. I’ve been doing it for 30 plus years now and basically Early Intervention is working with children, birth to three, who have a developmental delay or are at risk for a delay. So children who are born premature or children who were prenatally exposed to drugs or children who are born with Down Syndrome. We come in there and we work with the family as a whole to maximize their child’s development and get them going and learning.

Why is Early Intervention important?

I think it’s important for all children to be honest, but for children who may already have a delay it is really to get that child on target to enhance or maximize their development so that he could be able to possibly go to preschool by the time they are three or go to kindergarten. It’s really just to work with the child and make sure they’re meeting their milestones and work with the family as a whole. It’s not really to catch up but more to maximize their development. Every child is different so you know working on certain areas we have OT , PT, social functional, speech gross motor, fine motor, all kinds of areas we could be working on and so you know monitoring that and had having the family kind of learn to work on all those areas as well throughout the child’s day or you know through the routines of their home.

How is the inability to go into the home affected the way that you provide your services and supports?

It’s not so… it’s working out. I’m doing a lot of FaceTime or you know some people are doing Zoom with the family’s weekly and it’s actually working out. It’s a lot more prep work for me so I’m kind of going to each family and kind of writing down where the child is. Some developmental milestones and then I come up with three suggested activities they can work on each week pertaining to what you know their child is doing. And it’s great. I usually follow up with them through email or text. I ask families to send videos and then we also just FacTime with the baby and myself and I’ll sing songs. I’ll show them animals, it’s actually working. I mean I do miss going into the home but it’s going pretty well. I think some families do miss me coming in you know and you know being there live but I think temporarily it’s okay.

I think in that way it works some other things it’s harder to teach via zoom.

Yeah it might be. I mean I know a lot of that is, I’m sending pictures and kind of coming up with activities of things that they have in the home to work on whatever their goals are. Like let’s say stringing but they don’t have anything to string with. So I’ll come up with like let’s cut up some toilet paper rolls and get a string and put masking tape on it and let’s work on stringing that way you know . So I’m trying to be a little more creative and it’s kind of going back to how Early Intervention used to be. We used to just go into the home and kind of work with whatever the family had in the home. So it’s kind of goes back and forth sometimes that way. It’s going, it’s going okay.

Do you find that you need more of the parents to be hands on it in this situation?

Definitely and it’s making me realize I really should be you know because of me going in there it’s a little easier for me I go in there. The families are sitting there with me involved but I’m not really you know, I was just sort of showing them what to do but not now. I’m being a little bit more specific: “No I actually need you to do this week.” Families are definitely having to be more hands on. I think it’s kind of been good for them you know Early Intervention is sort of not me just coming in and doing it all but it’s really working with the whole family and having them kind of also following through as well with what I’m doing because I can’t just do it all by myself. So it’s sort of it’s just I that’s why I love grow a bunch and by the way it’s been since I work we get to work the whole family as a unit it’s not just the child it myself.

What I have to tell you that one of the things that I’m seen at least right now in the situation that we’re in you know being home and out of school is all of that Early Intervention when you would come in and work with Liam and I’d be there and we’d be working with him together. Now I’m seeing such a benefit of those times because as parents were having to work with our kids and I’m finding that I snapped back into that mode of just doing the work and this is what we’re gonna do. So not only are you teaching these kids skills and giving them a foundation but it also gave me a great foundation to snap back for the parents.

I’m glad. I’m so glad. Sometimes I feel like I have to remind myself why I get so zoned in to working with the child. Like wait I need to really include my parents a lot more you know. Like it really a good reminder for me right now during this time working at home just to… I really need to incorporate the families even more so you know so anyway so… But thank you I’m glad that that ended up being an, especially now that you’re both, both your kids are at home.

In your thirty years of experience have you seen a change in early intervention from when you started today yes definitely I have to stay thirty years ago I felt like it was a lot more of just the teacher and the child %HESITATION I actually back thirty years ago I taught our children well so one two and three year olds with special needs in a classroom so parents were not really involved that much I’m as the years does have changed %HESITATION it’s really getting parents involved and now it’s definitely even though center based programs that are out there parents are now kind of having to stay and be a part of that %HESITATION and the birth to three that %HESITATION population I’m not staying three to five year olds but the birth to three population you know parents are really encouraged to be involved because it really takes the whole family you know and everybody involved not just the one therapist coming in to do you know working on working out with the child but you know taking having the whole family work with the child as well %HESITATION so I think yeah I think yes change it also I think we talked a little bit earlier about used to be you know in it is keep going it goes back and forth you know we we therapists bring in their bag of toys and we work with the child and then we take those back employees and then you know I’m still with it’s really important I think sometimes too I think what’s changed is %HESITATION sometimes going in without your bag of toys and kind of just %HESITATION stating what the family has been kind of trying to figure out what they could do at home with the child %HESITATION using what they have as well so that’s always that’s always sort of seems to share theirs therapist you bring that back up towards the surface to drone and there’s a combination you know I think I think a combination is great to be honest but yes so there’s been some changes %HESITATION and I think it does I think it’s getting better especially with the things we’re learning now and you know asked helping families more I think I think it’s it’s it’s getting better what kind of things are you learning that are helping now I think I’m really involving the whole family %HESITATION as opposed to a you know back thirty something years ago you know it was just you know I worked at the child and that was it %HESITATION so now I just feel like I’m learning more from the family and what their concerns are as well %HESITATION I I think that that has really improved and gotten better and I think that sort of helped me along the way %HESITATION this to make sure we work all together with the family and for parents out there that are in California and have a child with down syndrome when that child is born and you get the diagnosis and regional center you contact regional center is it pretty straightforward that you will be kind of the the first stop for services for that child so yes usually someone may go out and do the assessment part %HESITATION someone from regional center but then the child development therapist or early invention therapist %HESITATION would be the first to go out there and then from there are usually what happens is you know an up physical therapist may come on board occupation occupational therapist maybe later down the line and later down the line possibly speech therapist but yes the child development this is usually the first one to the regional center at what age do your therapy start what what age should parents expect this kind of help it is birth to three so if your child is born with down syndrome I would say as soon as you can that’s just my philosophy %HESITATION now let’s say you don’t know I mean sometimes children don’t show exhibit any delays as soon as you fight if you soon as you feel like there’s something not right and your gut tells you when as soon as you can is basically I’ve worked with babies starting at six weeks old %HESITATION premature babies I used to be that right away we’ll go in straight away to any babies premature now it’s a little bit different I think maybe with budget cuts they just sort of wait to make sure you know maybe the baby is not gonna have any delays you know what I always say earlier the better what do you find the family’s concerns are so a lot of times all come into the home and let’s say it’s a child maybe with down syndrome and I’ve come into the home and they’ve already been heard by maybe other professionals on what their child is going to be doing or is not going to be doing %HESITATION and so some of the concerns of the families are having is that their child is this age and it is not doing what they’re supposed to be doing at that age let’s say they’re supposed to be standing at the stage and I’m not doing that so those are a lot of their concerns and I’m trying to go in there to show them what your child let’s look at not what the book says over here what your child supposed to be doing but let’s look at John right here right now he’s almost kneeling but you know what let’s just focus on what’s the next step okay the next up schooling to stand so basically their concerns are their child’s not doing what the other children are doing at a certain time and I I always try to say let’s see what he’s doing now so I think a lot of their concerns are always comparing their child but it’s not doing what the other child was doing at a certain age that was it I think I. milestone for me as a parent was to be able to just I’m not gonna look outside my blinders I’m just gonna be right here they tell you not to with Sophia what don’t compare her she’s going to get there she’s going to and I always try to encourage parents that that’s with every child a neurotypical child or a child with down syndrome or whatever challenge that they may have they’re who they are and that we can support them to reach their potential right yeah I know because you know there’s developmental milestones that children you know go through and it’s at a certain age %HESITATION so lot of times I discussed my faith is let’s try to see where he is not his age but where he is now looking more at the sequence of milestones achieved rather than at the age so just like keep going from there so kind of pointing out where they are and going from there and yeah trying to I think what Laurie said earlier putting blinders on and not not trying to see %HESITATION but this child is this stage he said yesterday does that make sense yeah be in the moment the in the moment yeah exactly %HESITATION and just going from there like a child with down syndrome they’ll eventually they’ll be reaching that milestone but it might be a little bit later than what the milestone what what it says that the age is doing just but I just like to see as long as were the curve is going up right as long as we’re you know we’re we’re going to the next step you know what now he’s sitting almost on its own up and then the next of P. sitting as opposed to %HESITATION he’s like nine months and he’s not sitting at but like %HESITATION but you know what look how far he’s come he’s now sitting you know leaning on you know the pillow or something like that maybe just talk about how you feel in your opinion on on how a parent can deal with some of the feelings of of milestones and judging themselves and causes is it can be a stressful situation for parents having a child that maybe you know has a disability or you’re not sure and and and how’s this going to work out and then you come in and I know I know you probably run into parents that have all across the spectrum feeling different things and maybe you could give a little advice to parents out there that may have the stress and worry I know my my goal is always when I go into a family is just really let’s look at the child’s strength let’s see where he is right now and let’s go from there I I think it’s important for families just to look at what your child is doing look at him right now he might not be reaching for that rattle but look how we smiling at you and let’s see if we can help him reach that reach that rattle and let’s go from there and let’s try just to write down and see from week to week what he’s now doing like finding any little thing I mean I’ve worked with families who have children with multiple disabilities visually impaired or hearing impaired so they’re feeling like they’re Charles not doing anything but then I would go in there and I would just look at the child he’ll smile I said oh my gosh look he looked at me and he smiled just finding what ever it is that child is doing and then elaborating and going from there I think that’s that that that’s the key is stop comparing which I know is hard but finding what your child what he likes what he dislikes and what he’s doing and then just taking that strength and moving forward %HESITATION I think the key to learning to finding out what your child likes and then whatever that is so I always ask families when I first kind of go see that what is your child like to play with sometimes like %HESITATION he does like to play with anything I’m like oh well what does he do you know what does he do he’s like %HESITATION well he does you know like this one particular toy over here it’s like great what can we do with that and let’s let’s see can we add another two way to it can we have them maybe bang on a toy you know just taking whatever the child is doing or what his strengths are and then just moving forward with that I mean that would be met by advice to families is just looking at what your child is doing and then just keep moving forward %HESITATION you know to see what the next step will be but not all strains come across as a strength I remember being concerned about Liam talking to himself and babbling you know was that something that was was a a milestone was destined to be concerned about and tell us why babbling and talking yourself are so important yes actually as babies as they you know at first when they’re born and for the first few months it’s sort of a lots of vowels and who’s in oz %HESITATION sounds %HESITATION and then as they get older and it becomes a little bit there some more double consonants a little bit about Bob or some bees bees dis keys and then bye bye bye da da da so why babbling is important it’s a good indicator of their expressive language for later on %HESITATION so you know usually if I’m working with the baby and I do hear lots of babbling back and forth and sounds it’s usually a pretty good indicator that you know that his talking later on is it’s it’s going to be coming along %HESITATION if I don’t hear any babbling then you know sometimes you know at the time that they’re supposed to be %HESITATION you know and closer initially here so then you know there could be things just like you know your infections or things you know some index some things could be like they just can’t hear very well or things like that but anyway babbling is actually sort of like a pre is a pre talking skills so if they’re able to babble it’s it’s kind of before it’s the kind of beginning of talking %HESITATION and then you know talk talking to yourself is just part of development %HESITATION I think you know about babies tended also babble to themselves and as they get older %HESITATION and they have more words and then they could sit and pretend play and kind of talk to themselves as part of development %HESITATION and it’s just it’s it’s great practice for them just to continue using the word using the sounds %HESITATION and emit pretending and imitating others %HESITATION yes so I I I I do think it’s important and I think also what’s really important is to kinda have that turn taking a babbling back and forth you know with the baby’s doing a buff then you do the bah and see feel real imitate you and then you know you can kind of switch it up he said by you’re gonna do dozens econ imitates that so so yes so I do think %HESITATION you know it’s important babbling and that’s part of development for babies you know up to a year and then start to use more words and then talking goes from there well I remember there was a little concerned with Liam about his years he had some ear infections but he ended up getting tubes in his ears but not real early I mean I remember getting a little cocky inside Sandel he’s still doing well as we went to the your doctor but we then did get to a point where we went to a doctor and we had a %HESITATION kind of sound proof room that we sat in Whitley M. and tried to test his hearing and while I didn’t realize how adjust the fluid in his ears and and that kind of muffled sound how that would affect his speech right and once the tubes are and my son had jobs as well wait it starts coming then you know because what they they could be hearing obviously you you would say Liam and he returned but they probably he probably maybe heard a lots of mobile drugs were kind of you know muffling you know like not clear words so that does affect language I mean my son had numerous ear infections up until a year and wasn’t you know talking as much and then once the tubes came and it made a difference but it’s expressive language was a little bit behind but you know what the main catch up or you know they start talking and they they they’re able to hear a lot better because that’s really I mean to learn to talk is really listening to you know us dialoguing %HESITATION reading to them and then then listening being able to hear us right is really important I remember at last have talked to several parents of children with down syndrome and a majority of them have had their child has had tubes put in at one point and I know it’s probably a higher percentage of down syndrome children just because the narrowing of the airway but like you said your son it is a typical thing not something to be worried about it is something that that happens to to to to any child right and I know it’s scary because I I’m not sure if Liam Butler brought I remember my son had to be put under and that is scary to get the tubes and but I have to say it was it’s just well worth it because the two but that doesn’t change all that liquid out and then they’re able to hear us more clearly yeah I believe it was a outpatient surgery technically but he was put under that scares parents and I totally understand I mean my son was a year and I think Liam might have been older X. I actually don’t remember that with lamb he was a bit older okay yeah it’s scary either way up but %HESITATION but it it it it’s outpatient and it’s it was is very much worth it I mean my son now you know I was talking at Liam obviously he’s using his language and so it’s it’s a good thing I do remember that the tubes were very scary just the potential of surgery and all that embraces and also the the reality of %HESITATION okay here’s here’s a new challenge and what is it gonna mean and what will it be an all these unknowns came to the surface along with a lot of other unknowns that I had maybe push down so I definitely wish I had known then exactly what the surgery was in even even though it was still a little scary because it is a surgery and there is Anastasia but at if I would have had some insight on this side that I have now on the side of it is so Caroline the name of our podcast is if we do then is there anything that you would like to share and if you knew then yes so I guess ten years ago my suggestions to the families maybe ten years ago was a little bit more of %HESITATION well at this stage he needs to just not do that not not have the bottle you know it was just sort you know the book says you know and %HESITATION my approach now as as I had kids and not gotten older is let’s get out what what do you need to do to feel good and you know I it’s a slower approach I guess it would be to like what let you know suggesting something let’s say it’s time to win from the bottle I’d be like oh well let’s just see and let’s check with your pediatrician it wouldn’t be so like you have to do this that now it’s like what what makes you feel good right now and let’s see how we can help that I’m I’m not sure about making no that makes total sense makes total sense that’s how parents of the child with disability feel they feel that they’re not really allowed to just let it come as it comes you know to relax and take a breath and that’s what our podcast about is that it’s much easier if you have a typical child just say this is what I’m doing I’m just kind of hit they’ll get when they get it and the world give you permission to do that too because if you start getting hard on yourself as a parent I mean the whole of the social media there’s you know people are like Hey and I told Steven the other day one post was you’re fine we are kids not missing anything they’re gonna learn that they’re not falling behind and you know there was a stream of people behind a gun that’s right relax you don’t have to do the homework and I honestly wanted to throw up because I’m like no I don’t have that luxury I my child will fall behind and if yours falls behind people will say pandemic it’s okay you’ll catch I don’t use words like regression yeah they won’t say regression they won’t say special day class they won’t say off curriculum and if my child falls behind that’s the consequence and I didn’t say anything because I know that everybody’s trying everybody’s lifting each other up right now and that’s that’s my that’s the line I walk in these were just other people trying to support themselves but if you do have a child with down syndrome it’s not all you’re not always given the same luxury like you said and so that permission that you give to hear it from just one person who shares your experiences or understands the challenges that you have that’s a gift it’s life changing his life changing for the parents and it’s it’s definitely life changing for the child %HESITATION definitely so we thank you that you’re welcome you’re welcome that’s great I’m so glad that you know and it’s just going to make me want to do even more.

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