Learn about childhood apraxia of speech from parents!

[Music] my name is julie robertson i'm from inwood west virginia and my daughter josie robertson was diagnosed with apraxia at the age two and a half my name is uh rachel nestor west and i am i live in a bowie maryland i'm a mother of three children i have two boys and one girl my youngest son marcus who is six years old was um diagnosed with apraxia in june of 2018 so um it's been an interesting journey um i am part of the uh a parent member of the diversity and inclusion task force for apraxia kids uh we meet monthly to you know address the issues and concerns of you know spreading awareness um promoting education and um support to um [Music] minority the minority community all all communities you know so that we um are sensitive to the diversity and inclusion piece when it comes to apraxia kids just diversify that platform and you know get the word out and educate as many communities across you know not only nationwide in the states but across the world when it comes to apraxia kids in our local county with our birth of three program and her speech pathologist that came to our house then started recognizing it at that age about two and a half when we started recognizing things like that so we actually hooked up with the ent at university of virginia first and he recognized it more than anything the ent did with the speech pathologist from our birth of three program um before we originally started speech after the birth of three program she had her adenoids and tonsils taken out at uva and then seeing if that would correct her speech which it did not so then that's when we pulled along and we got diagnosed with apraxia through the university of virginia more or less she couldn't she was saying words but she wasn't getting them all out it was taking her pauses in between her words where she was trying to think what she was going to say but she just couldn't form her mouth the right way even eating foods um like she still doesn't eat right like she's 7 in july and she's still only 35 pounds she doesn't eat because she doesn't it her you know how you know her mouth it takes a while for her to eat because her mouth is so sore she's always wanting to eat soft things or you have to cut everything up really hard easy for her to eat so it makes it her challenge it makes it very challenging to feed her too still she's very picky she likes lunchables all the time and things like that and we also tried to get her diagnosed with oropraxia because of her mouth issues but they said because she would eat like laffy taffy and wouldn't would eat it in the time frame they wouldn't diagnose her with that my son uh received his official diagnosis for a childhood apraxia of speech in june of 2018. he was around the age of i want to say between three three and a half years old and um the way we came about his diagnosis is um he is the third of three children that that we have so with the other two children you know i was able to gauge milestones especially you know in their speech as they developed and when marcus was around one you know he was still doing kind of the baby talk so i said oh he's just taking his time to to speak then two years old he was still in the baby talk stage it was hard to understand what he was saying to communicate you know it was just baby talk we couldn't understand what was going on with him and then by three you know and i knew with with my previous children you know at one they were saying mine no up down you know all the typical things that babies would say around that time so by the time he was three years old you know my husband i notice he's still not talking it's still baby talk it's still gibberish it's hard for us to understand so at that point we had decided um that we needed to you know to take him somewhere to to to get assessed so um in addition to his pediatrician we went through our county and we uh did the our county's infinite toddler program so through that program we did assessments for him and you know it was determined that he did have uh like a developmental delay that there were some issues and he was below average in certain areas of where he should be at the age that he was at so um after doing that you know they suggested that he get with an slp and a special educator would come to our home to work with him and help him develop um with his you know with his speech along the way um the disappointing part in that is that you know based on the testing that the county had done it seemed like you know he needed a lot of help in a lot of areas and our county only us only afforded us two hours a month of services from them so my husband and i we knew that that wasn't going to be enough to get him to where he needed to be in terms of his speech so we started to do or decided to do additional assessments with him and we took him to national children's center in washington dc uh because we live in maryland and we took him there met with a clinician and they did an assessment with him and you know keeping in mind that he's three three and a half years old he's still a little person um he's in a new environment around strangers things of that nature so the clinician did a series of testings with him asked him different questions um you know gave him different commands to do this to do that you know he's three he doesn't know you so it's not to say that he can't do it it's just that you know he wasn't comfortable i guess so he didn't you know do everything that she she asked him to do so after an hour and a half of doing the testing and waiting you know a couple of weeks uh a report was issued to us it was about a 32-page report and she assessed that he was on the um uh the autism spectrum she she determined that he could possibly be autistic um to me as the mother you know knowing my son knowing my child i was not in agreement with that assessment um i did not feel that my son displayed characteristics of autism um i just i i wasn't in agreement with the report i was actually disappointed i was distraught i was i was sad you know to think that you know someone is telling me that my child could possibly be autistic but me as as his mother i knew that that just it just didn't fit you know i think it was it was something else and she couldn't figure out what it was you know and i didn't want to be in the position nor my son where he's labeled especially or misdiagnosed that's the big thing just misdiagnosed because i knew that that wasn't the type of behavior or the characteristics that he was displaying you know it was an issue of communication so fast forward you know to that um i was actually talking to one of my co-workers at work one more one day because you know the the diagnosis was so new and i was just like you know what do we do like you know i'm having these conversations with my husband how are we going to help we're like what can we do the county's only offering us two hours a month that's not gonna do anything like we have to do more so i was talking to one of my co-workers and she told me a story about a friend of hers who was actually kind of going through the same thing that i was going through like her son was was probably around the same age i can't remember exactly but he was having issues with his speech as well so she told me of a place that she was sending her your son to to get services and it was in our area i said okay give me the give me the name like i you know let me call them and try to get him help so that's what i ended up doing so we we called this we called this organization in columbia maryland and at the time that i called him we called them there was a wait list i was like okay just put him on the waitlist when we get when it's our turn we're taking him to you and finally you know it was our turn so we went to the slp um to the organization they met with marcus they did a couple of testings and assessments and i and i provided them the report that i got from children's hospital and i did i let her know from from from the very beginning up front i am not in support of this report i do not believe it i do not believe that my son is autistic i think it's something else they just don't know what it is you know that's why i'm here so after she did a couple of sessions with marcus she determined she was like yeah he's not autistic because i work with autistic children and he absolutely is not autistic i said okay that's what i know she said no he is 100 apraxia i said what is apraxia it's like i have no idea what i was like what is apraxia so she kind of gave me the gist about it being a motor disorder and you know kids having issues with sounds and pronunciation and attribution articulation so i looked it up and you know i went to google i looked it up i looked at the diet i looked at the definition and as i was reading the definition it is exactly it exactly described marcus's communication and how he was communicating it was spot on i was like okay this is it she was right this is what it is so that's when we got our official um diagnosis for him in june of 2018. so from that time um you know it's it's just it's just been a journey since you know trying to find an slp who specialized in apraxia and you know the hunt is on for that and um yeah it was just a lot you know but yeah we've been on this journey since since june 2018. with her first diagnosis at uva um she also was diagnosed maybe a year and a half later with hypernasal speech with vip i can't say it the whole the whole word with it too so she also has a pal her palette is very short in the back of her mouth so it makes also her speech very hebrew nasal some of her words so with her practice she also has this too so we actually have we've had a palette surgery injection surgery so we go back in october to see if it has dissolved and if it dissolved they'll insert a permanent pallet in the back of her mouth to help her with with her hypernasal speech too but with her proxy has been with the school um she did early invention pre-k through her iep at the school system so she started going to pre-k at the age of three with her iep um then we live in west virginia so i took her to morgantown and she got we went to the disability of excellence and she got tested to to bring back to her iep and that the school board actually bought her a communication device so she's had a communication device for three years they bought the app and everything and they actually bought a brand new app or a brand new ipad this year so she's able to use that in her classroom we also have ot she has started her ot program two years ago with her iep through the school system she continues with that we do outside therapy twice a week and once we were doing ot but we had to take a break up doing so much therapy for her so then we also um we were noticing her eyesight she was cutting really close to her face or she wasn't connecting her dot the dots and stuff like that so we took her the pediatrician he she failed her eye test and she's been wearing glasses for about a year now there have been a lot of um [Music] bumps or challenges you know in this journey i think one of the biggest challenges that um we've come across in our journey is one you know finding an slp that specializes in um apraxia honestly i can say in where i am i i haven't come across too many we were blessed to have found initially the the two slps that that have worked with marcus they are amazing you know i i i'm very grateful to them because i feel like had it not been for them and their efforts with marcus marcus definitely would not be where he is today you know there was a i mean marcus is now saying sentence you know like at least three to five word sentences now and he's six years old you know um there was a time you would say maybe one word or um maybe two but you know to see where he started in 2018 to where he is now in 2021 it's it's amazing so that's been a challenge just finding a really good slp um that specializes in apraxia in your area that um knows how to address those challenges um the second um challenge that we've had on our journey is insurance insurance has been a challenge um what we have learned is um you know as we as we started or going through this journey the the insurance companies need to bill you or code you i'm sorry they need to they need to code you with as a as a disability it needs to be coded as a disability i don't know how they do it but when we submit our claims our teams have to have a certain code and the insurance company has to build um i guess him or my son as as you know a person of disability what was happening was a lot of our initial claims were getting um denied and then they would come back to us and then as a result we were indebted to the slp because the slp was not getting paid so i know in some instances depending on where you are you know there may be some insurances that cover these services 100 ours does not so we have a co-pay every time we go to to um to session with our son which is three days a week you know we pay out-of-pocket expenses every time he goes three days a week times four weeks in a month you know that's that adds up that adds up so you know our battle has been with the insurance company just um ensuring that you know he gets the coverage that is due to him and you know and if you're blessed enough to have an insurance um if you're blessed enough to have insurance that will provide unlimited services that's great you know we have to fight for that but that's what we have now for ourselves we do have unlimited services the only kind of um headache is that we still have to go back to our insurance and every six months to have that coverage reapproved we have or re-optimized i think that's the word we have to go back every six months and have that coverage um reauthorized every time so that's a headache in itself um other challenges that we've we've had on along our way is just you know the advice i would give to parents is that you know your child best you know and when you suspect that something is wrong with them or there's a problem and you take them to these professionals these doctors for an assessment don't i i guess i don't know how to say this but you know don't take the first diagnosis you get as the final diagnosis you know if there's something in your gut that's telling you you know i'm not so sure get a second opinion get a third opinion get as many opinions as you get so definitely as you go through your your journey you have to advocate so that's one of the things like i am like my number one sons advocate between my husband and i you know we advocate for our son like if you know someone tells us something we're like no you know like i do i challenge a lot of things and um even with him in school you know when they do his iep and their writing out on his progress and things like that you know i want the progress that they report on him to be accurate and current my biggest thing has helped me never give up keep fighting try to figure out what's the best thing for your child and get the you know get the right help for your child you know your child the best out of everybody even at school just you know never give up you know we constantly take her to you know uva or the pediatrician or we reach out if she if i feel like she's not doing really well in school i reach out to her ot or her reading specialist lady that she has this year in kindergarten and stuff like that it's just staying especially you can't go into the schools right now to have any meetings so everything's virtual so you know just staying on top of everything being involved you have to have really big patients or stay like i stay organized like i have a book just for her stuff for from uva and i have a book for her speech from birth of three all the way to now through school and i keep everything so if they if they like deny me at something at school i have my information that she was fully diagnosed or you know that ex she's been diagnosed from it like a development pete specialist not just an lsp or anything like that she's got you know we've had a development peds because maybe we thought it was autism but no it's not autism you know so we have we had our fully diagnosed so i definitely say as you go through this journey question everything always advocate for your children um always be their voice until they can be their own voice and don't allow anyone to label or stereotype your children ask as many questions as possible don't let whatever the initial diagnosis you receive be the final diagnosis ask questions get second third opinions if you're able to i know that you know not everyone is in the situation where they can go to multiple different doctors and get different assessments but you know definitely trust your gut especially as the parent of that child you know you know your child best and always be that child's um advocate and voice um you know those are those are the biggest i think for us you know those have been the biggest takeaways um in this journey and even you know as our son progresses and you know makes his strides along the way each and every day you know there's still there's still a lot to be learned from this journey you know we're not we're not at the end yet you know he sticks you know the prayer is that you know hopefully you know he'll graduate from from apraxia and move on and have a a good life and you know he's able to communicate um to the point that he's fully understood but until then you know we have to help him and support him along the way and these are the things that we're doing for our son and you know if anyone came to me and asked me about a practicing you know those are the main things that i would i would um advise to them as they as they go on this journey you know it's a lot and patience and understanding empathy compassion all of that you know you need to have all of that in this journey um because you will get frustrated you know as the parent guardian the child you know there there's frustration um but you know that's that's what i would that's what i would say about about our journey um and it you know it still continues so the proxy walk really really worked for us our birth of three program actually got us in touch with the very first one we ever did and we were like three weeks out she told us about it before about three weeks before the date so after that we are all games in you know we we stay on top of it every year as soon as they post something about it um i guess it's the easiest way to network it's just social media putting it out in your local newspaper i'm going to write the newspaper this week about it to see if they'll interview josie um i write on we live where we live in we have like a social media thing for the south berkeley county where we live in so we put stuff like that or you can put stuff at the local gas stations and it really helps bring awareness because a lot of people don't know about this even me working at chick-fil-a some people that i work with have never heard of this until they met me or josie say first and foremost that i am truly um grateful for apraxia kids it has been an amazing resource um not only for information education but also support um i remember in i believe it was 2019 or 20 yes 2019 when i went to my first national conference for apraxia kids it was in pittsburgh pa beautiful city i'd never been there before and i went because i just needed to learn so much about a proxy there was so much that i didn't know you know i went on your website and i saw your your brochures and the different resources that you have available you know in talking to um school about your children's diagnosis you know helping teachers understand um you know sharing information with family and friends about what apraxia is i mean just just um an absolute uh gem of information and then um the awareness that you all bring to apraxia um i have been we have been an active um participant in the walk for apraxia we did our first uh walk for apraxia in 2019 we did our second one in 2020 and we're in the midst of our third one now in 2021 and in the first um two walks in 2019 and 2010 each year we were able to raise over a thousand dollars for marcus's team and um i'm grateful for the support that i get from family and friends when it comes to marcus um and just you know their genuine interest in learning more about apraxia and how they can support what they can do just participating in our walk you know unfortunately you know with the pandemic we've had to do it virtually for the last two years but even in doing that you know we've still received a lot of support um for his team where he's been um in the championship club for the last two years so yay marcus so like you know that's that's awesome just to be able to get the word out and and generate that type of support and um just getting getting people to talk about apraxia kids or apraxia i'm sorry aeropractice yeah that's a good thing too to talk about the organization as well so um between the conference and you know the walk for apraxia you know we're very involved in that um i look forward to the to this year's conference um i'm excited about that so again you know just the the speakers the um vendors that are available just you know all the resources and i think the most valuable thing for me with the um conference was just talking to other families and not just from my area you know but just from different states you know i've met people from new york connecticut new hampshire um you know jersey area you know and we're all talking about our journeys and how different they are you know those are those are the things that i found most valuable and i continue to find value you know through uh apraxia kids the webinars you know just just i mean i could go on and on the webinars the staff you know the staff is amazing you know i'm fortunate enough to be a part of the newly founded um diversity and inclusion committee for apraxia kids as a as a parent member um you know that's that's an initiative that we started last year in in 2020 and it's been amazing you know because the whole goal of our committee is to you know get the word out about um apraxia kids and to get it out in communities that aren't aware of a practical so the the minority communities and and just heighten the awareness you know so we're doing a lot of work behind the scenes to to just promote awareness and education when it comes to apraxia kids so a practice is like i say it has been an amazing resource and blessing to uh my son to to myself my husband you know to our family because you know we we're learning so much more about this journey than than we ever knew you know prior to getting a diagnosis uh from marcus so it's just it's just been an amazing resource to to go to time and time again and um i just i just love it it's great it's wonderful [Music] you

Channel: Apraxia Kids

Views: 341

Keywords: Apraxia Kids, childhood apraxia of speech, apraxia, CAS

Id: 2V8ArF21Ptc

Length: 27min 24sec (1644 seconds)

Published: Fri May 14 2021