I think the hardest part of being a parent is the unknown... and trying to trust yourself to make the right decisions.
It's further complicated when there are extenuating circumstances involved. Especially related to hearing loss. When you become a pregnant, you are thrust into this world of decisions.... you are now entrusted and looked to for answers about this new little baby. It's scary for any new parent. Do I get an epidural? should I get vaccinated? Do I want to breastfeed? Which diapers do I want to use? Should I go all organic? What should i eat while pregnant? Who do I want at the birth? I have to create a birth plan? What pediatrician do I use? Etc. Etc.
Then after you have your baby you have more decisions to make... from if you want to co-sleep, bassinet sleep, bed share, etc. How often to you want to feed? on demand? on a schedule? Do I want to go back to work? stay home? what daycare should i use? and the list goes on.
(I will share my birth story for both kids another day)
Then you find out your new one didn't pass a newborn screening test. BUT if you are like 95% of the people I know, they instill some "hope" in you that the machine is faulty a lot and just follow up with an audiologist to be sure, but it's prob nothing, or maybe just some fluid. (which is another post) :-)
When you finally learn that your child is deaf or hard of hearing; and what that even means in relation to you child; you now have even MORE decisions to make.
Do you want to go all oral/verbal? do you want to sign? do you want to use cued speech? do you want to use a total communication method? and Your still processing that your child cannot hear well! You will also be asked if you want to use hearing aids, or if your child looks like a Cochlear candidate you will start those questions. There are a lot of additional decisions to make... and guess what. unless hearing loss is expecting (runs in the family); You prob. have never heard half the words used or have any idea what is best and what you want to do. I personally believe in trusting you instincts... God gave them to us for a reason.
We have gone the mostly verbal route with a total communication approach.
aka, we use spoken language with Chloe all the time, but are teaching her sign, mostly baby sign right now as we do not know ASL fluently.
I am SO thankful I have signed with Chloe, or else we would have ZERO ability to communicate, or for her to communicate back to us. It will help her no matter the route she goes down in the end.
Right now my debate is... do I continue focusing in on verbal communication, or do we introduce more sign/become more fluent in sign. And if so, what type of sign? ASL or SEE (signed exact english) Or do we want to go with the Aug. Communication device. (possibility)
I am still leaning towards trying to do it all.... which just exhausts me but I feel it gives her options. I want her to learn to hear and listen. EVEN if she has to respond with sign or Aug Communication. I want to give her all the tools available to communicate and grow. But it is hard. Then my question becomes... is she hearing me? I know she can hear noise and beeps with her aids on.. but how distorted is it? how well can she decipher words? Right now I am not sure how well she can... especially without lip reading involved or sign.
I am working on coming up with what words she recognizes verbal only. (not lip reading and no picture or object) vs. what signs she knows if I show her (without verbal) the object or photo. Then a 3rd category of if she is capable of identifying an object by pointing/picking by verbal only. I am hoping these three things will paint a picture of what she is hearing, how well is she hearing, and what her true receptive language is by listening. I am going to work on this for a week and keep notes... as I know one single day does not show the full range of her ability.
The reason for this is she is not progressing with speech. She is below a 12m old in the speech department. that is across the board... in all auditory areas. (now her signing vocabulary is a different story... she knows lots of signs and uses them spontaneously) and that goes to show us that she is intelligent. She knows her shapes and some of her letters already, she picks up on things quite quickly and is social.
The challenge is I think she has some Apraxia. (oral motor planning problems) so even if she is hearing clear she cannot make her mouth form the words. BUT what if she is NOT hearing clearly... even if she has apraxia.... if she is not hearing all of her vowels and consonants clear and defined that will make learning oral motor planning 10x harder then it should be. How can she be expected to practice and work on learning how to move her mouth to form sounds if she cannot hear the sounds clearly. with a sensoneural loss... the hearing aids amplify the sound, but they don't make it clearer or more defined. it can be static-y and distorted still. But she is so young we cannot tell. Normally you can tell a that hearing aids are not benefiting a child because when they start talking, they are missing certain sounds in most/all of their words. But for a child that can't talk... you can't. and she also doesn't have a clear enough vocabulary to do speech recognition testing yet. But I also don't want to wait until she is 4 years old, still not talking, with the language ability of a 18month old. and then go OH she can't hear the sounds clearly even if she looks at the beep in the booth.
So this leaves me with the task to do the best I can to figure out what is she hearing WITHOUT lip reading, and without signs/gestures. The hard thing is she can still sign/pick the object correct sometimes if I let her lipread without her aids on. So I KNOW she can lipread. I honestly think she lipreads along with interpreting out body language to figure out what we are trying to say. She hears us ask her do you want to go to the store... but if she cannot figure out context around it, and our body language she will think we asked her about a door. (for example)
I just want to plug myself into her little brain and know what she is hearing, how well she is hearing it, and know if she needs an implant, more sign language, or just us just to leave her alone! :-)
Overall, to conclude this rant...
My daughter is lovely and happy and confusing me, myself, and I... plus all of her therapist and doctors. I am hoping this record I will keep may help us determine the next step.... if there even is one.
Tuesday, November 20, 2012
Wednesday, November 14, 2012
How sensory processing changes the approach to therapy
This week has been frustrating as a parent.
After school on Tuesdays we have a parent session with the preschool SLP (speech lang. pathologist) and we work on trying to improve Chloe's auditory/verbal skills. When Chloe was younger we would work on inputting sounds with objects; now we work on her vocabulary and trying to get her to sort, follow directions, etc. We also try to "test" her by having her follow simple directions by verbal cue only. (Chloe show me the boat, the cow, the horse, the car etc. etc.) and we start with one object out of 3 then increase the "set" to 5 and eventually 10. (is the goal)
Well This past Tuesday Chloe was NOT cooperating, we would ask for the boat, she would SIGN boat, then hand or point to the ball. then we would ask her to show us the sock, she would SIGN sock then pick up the bus.... so on and so forth. Then I tried holding the photo up to her and saying Chloe what is this? and she would sign boat for boat, sock for sock, etc. etc. (she has a lot of signs and is quite good at them). So the questions is WHY is she not able to hear me say boat, and give me the boat. I know she knows where the boat is, and what a boat is.... but she still picks up the sock or bus or car.... I think she was picking at random to make us leave her alone; that way she can get down and jump and climb and spin.
I believe it is because she is bored and exhausted after preschool. She has a lot of sensory needs and has the NEED to move and jump and spin and chew etc. etc. and I think after class she has not had "enough" of that type of input to be able to focus. And on the same token she has just had a few hours of auditory input and socialization and noise and I think she is over stimulated in that department. We came home and took a nap.
I am waiting to hear about changing out session to a different day that is not right before or after school. I know it means another 20 minutes drive, but I would much rather have productive sessions then feel like we have accomplished nothing... week after week.
Just as an experiment (and to settle my worried mind, as I was freaking out if she has lost the ability to do this activity) I video taped her after her nap the same day.
These video's (linked below) are of me sitting directly behind her so she cannot read my lips. (yes, my 2 year old can lip read) and it is forcing her to think and you can see her concentrating and focusing. Also... we gave her lots of trampoline and trapeze time before this activity.... This allowed her to sit still.
With sensory seeking disorders (or any SPD), she cannot sit still if she has not/is not getting the input she craves. We struggle with eating, and I am starting to realize if we make her sit for a little while until she can no longer sit and then let her run around... she will come back and eat more. So the issue isn't gastric (like we thought) as much as sensory. This is a new piece to the puzzle... and we are still learning about it. We have not had an official diagnosis but ALL of her therapist agree, we are setting up an Occupational Therapist to come observe her.
The concentration and attention of the child in the video's is night and day different then earlier in the same day doing a very similar activity.... It is showing me how much she NEEDS that input in order to be able to think and process information. It also eases my mind that she does really know what a boat is, as well as the other things you see in the video. Some of the things she misses are "newer" in the input department but she tries really hard to get them right!
All in all, my personal conclusion is that while a typical hard of hearing child (one that only had a hearing loss with no additional needs) may be able to sit and do this activity after preschool, or any other therapy. But a HOH child with a sensory processing need... It adds the extra challenge of meeting the sensory needs before you can ask the child to listen and think and problem solve. Asking a SPD child to sit at a table without them having the adequate amount of input, is like asking me to sit on a bed of nails. It is physically uncomfortable and impossible for them to do it.
So as a parent... my job is to advocate for my daughters, (both of them) for any need they have. For Chloe this means not always doing things the "convenient way", but making sure her appointments and therapies are spread out enough... To make sure we are not doing too much in too short a time frame where she is not benefiting from these therapies. It also means trying to space things out appropriately. I would not want to have her auditory input preschool, then speech and feeding therapy, then her hearing teacher all on the same day. Sometimes we are forced to have more then one therapy a day, but then we need to be sure there is enough space for a break in between every session.
Video 1
http://www.youtube.com/watch?v=l7tNmA8eW_I&feature=g-upl
Video 2
http://www.youtube.com/watch?v=2Guf9gz9BJw&feature=g-upl
Video 3
http://www.youtube.com/watch?v=6dVRFHiFNZ4&feature=relmfu
I also have e-mailed these to her teacher. :-)
I am so proud of my smart little girl!
After school on Tuesdays we have a parent session with the preschool SLP (speech lang. pathologist) and we work on trying to improve Chloe's auditory/verbal skills. When Chloe was younger we would work on inputting sounds with objects; now we work on her vocabulary and trying to get her to sort, follow directions, etc. We also try to "test" her by having her follow simple directions by verbal cue only. (Chloe show me the boat, the cow, the horse, the car etc. etc.) and we start with one object out of 3 then increase the "set" to 5 and eventually 10. (is the goal)
Well This past Tuesday Chloe was NOT cooperating, we would ask for the boat, she would SIGN boat, then hand or point to the ball. then we would ask her to show us the sock, she would SIGN sock then pick up the bus.... so on and so forth. Then I tried holding the photo up to her and saying Chloe what is this? and she would sign boat for boat, sock for sock, etc. etc. (she has a lot of signs and is quite good at them). So the questions is WHY is she not able to hear me say boat, and give me the boat. I know she knows where the boat is, and what a boat is.... but she still picks up the sock or bus or car.... I think she was picking at random to make us leave her alone; that way she can get down and jump and climb and spin.
I believe it is because she is bored and exhausted after preschool. She has a lot of sensory needs and has the NEED to move and jump and spin and chew etc. etc. and I think after class she has not had "enough" of that type of input to be able to focus. And on the same token she has just had a few hours of auditory input and socialization and noise and I think she is over stimulated in that department. We came home and took a nap.
I am waiting to hear about changing out session to a different day that is not right before or after school. I know it means another 20 minutes drive, but I would much rather have productive sessions then feel like we have accomplished nothing... week after week.
Just as an experiment (and to settle my worried mind, as I was freaking out if she has lost the ability to do this activity) I video taped her after her nap the same day.
These video's (linked below) are of me sitting directly behind her so she cannot read my lips. (yes, my 2 year old can lip read) and it is forcing her to think and you can see her concentrating and focusing. Also... we gave her lots of trampoline and trapeze time before this activity.... This allowed her to sit still.
With sensory seeking disorders (or any SPD), she cannot sit still if she has not/is not getting the input she craves. We struggle with eating, and I am starting to realize if we make her sit for a little while until she can no longer sit and then let her run around... she will come back and eat more. So the issue isn't gastric (like we thought) as much as sensory. This is a new piece to the puzzle... and we are still learning about it. We have not had an official diagnosis but ALL of her therapist agree, we are setting up an Occupational Therapist to come observe her.
The concentration and attention of the child in the video's is night and day different then earlier in the same day doing a very similar activity.... It is showing me how much she NEEDS that input in order to be able to think and process information. It also eases my mind that she does really know what a boat is, as well as the other things you see in the video. Some of the things she misses are "newer" in the input department but she tries really hard to get them right!
All in all, my personal conclusion is that while a typical hard of hearing child (one that only had a hearing loss with no additional needs) may be able to sit and do this activity after preschool, or any other therapy. But a HOH child with a sensory processing need... It adds the extra challenge of meeting the sensory needs before you can ask the child to listen and think and problem solve. Asking a SPD child to sit at a table without them having the adequate amount of input, is like asking me to sit on a bed of nails. It is physically uncomfortable and impossible for them to do it.
So as a parent... my job is to advocate for my daughters, (both of them) for any need they have. For Chloe this means not always doing things the "convenient way", but making sure her appointments and therapies are spread out enough... To make sure we are not doing too much in too short a time frame where she is not benefiting from these therapies. It also means trying to space things out appropriately. I would not want to have her auditory input preschool, then speech and feeding therapy, then her hearing teacher all on the same day. Sometimes we are forced to have more then one therapy a day, but then we need to be sure there is enough space for a break in between every session.
Video 1
http://www.youtube.com/watch?v=l7tNmA8eW_I&feature=g-upl
Video 2
http://www.youtube.com/watch?v=2Guf9gz9BJw&feature=g-upl
Video 3
http://www.youtube.com/watch?v=6dVRFHiFNZ4&feature=relmfu
I also have e-mailed these to her teacher. :-)
I am so proud of my smart little girl!
Monday, November 12, 2012
How to keep hearing aids on a baby... say what?
how to keep hearing aids on infant, baby, and toddler.
From the time we first learned Chloe may have a hearing loss to when she was finally fitted with aids was about 12 weeks. I don't remember the day we knew she failed the new born screen... I know it was in December after Christmas. (because I bought her all these musical toys and then went OH well that was pointless) - It wasn't pointless, but that was my thought-
I do remember she got her first pair of hearing aids the last day of March 2011. We had the ABR in February and had to wait a few weeks to get earmolds etc. etc.
When we went into UNC audiology for the fitting, I was overwhelmed. They showed me how to put them on.. and I remember thinking there is NO WAY I can put these on a willing recipient and you want me to put them on my infant? Are you crazy? I have to twist them which way? How do I tell which side goes where? I have to change these tiny batteries? Will these hurt my baby? will they be too loud? Can she hear me now? How do we tell?
I had SO many questions and yet I feel like I just stood there and listened. I don't think I asked many questions, I was very overwhelmed. I remember the audiologist showing me how to put them on, and then telling me to do it... and my hands just shook. You would of thought I was doing surgery I was so nervous. I really thought I could hurt her.... I didn't want to make this hurt... would it be easier to just sign with her?
Then came the "safety" talk on the hearing aids. Don't let her ingest them... they have batteries... like real corrosive batteries that are TINY and very easily swallowed. Not a choking hazard (well kinda) but swallowed into the body. and it's happened before? a lot? AHHHH Can she die? Take her to the ER? what!! Are these hearing aids really worth it, can't we just wait until she's older? Why now as a baby!! She was only 5 months old! (well 4 months and 30 days)
Then our audiologist said, now you need to keep these on all waking hours... she will pull them off. hahahaha.... pull them off was an understatement.
I swear I spent more time putting them on her and taking them out of her mouth then she actually wore them. But it did and DOES get easier...
I can now put them on her with one hand while she is wiggling and trying to run down the hallway. I don't even need to be on the same side as the ear or look. Get this... I can put them on easier then the audiologist can put them on her.... I remember watching her show me how to put them on and I thought I'll never be able to do that half as well or quick... this is her profession. Well... parents put them on more then an audiologist hehe!
Anyways... How do you keep these dangerous battery containing EXPENSIVE thousands of dollars worth of electronics on my 5 month old. Really? any ideas? they gave me this string with a clip and some rubber pieces. Great idea... but they failed quick. The rubber piece was pulled off so fast by Chloe.
For the first 3 or 4 months I think Chloe wore her aids about 2 hours a day total... I'm not kidding. For a little while I was adjusting to the idea that she couldn't hear and emotional stuff... and I just plain got so so tired of putting these aids in 5 or 10 times in an hour. NO JOKE! So I gave up some. Then as I processed everything I realized I HAVE TO JUST GET THIS DONE! It was hard, and It sucked, but she NEEDED TO HEAR so she can learn, so she can talk, so she can hear me sing to her, so she can hear me tell her I love her.
Then I found this: Those crochet headbands... and it def helped a TON!!!! But then she learned to pull that off.
This saved us... best invention ever!!!!! And they are cute. She looked like a little amish baby! hehe It is a thin enough material that it does NOT produce feedback. and it velcros underneath and is less distracting than strings to Chloe.
The other thing I never tried but was recommended was Hanna Anderson Pilot Caps (photo below and link) I have heard many people loving these... I did not think Chloe would leave the stings but I know many families that these have worked wonders.
http://www.etsy.com/shop/thehearinghalo?ref=top_trail (Hearing Halo - I have purchased these and they are great)
http://www.etsy.com/shop/anchoryourhearing (no experience but these look great!!!!)
http://www.hannaandersson.com/search.aspx?search_for=pilot%27s%20caps&fsb=y (hanna andersson pilot cap)
http://www.gearforears.com/ (Ear Gear- great!!!!)
http://www.otocool.com/ (so fun for kids)
http://hayleighscherishedcharms.com/ (earrings and other decoratives for hearing aids/implants) SO cool and they are made by an amazing kiddo!)
From the time we first learned Chloe may have a hearing loss to when she was finally fitted with aids was about 12 weeks. I don't remember the day we knew she failed the new born screen... I know it was in December after Christmas. (because I bought her all these musical toys and then went OH well that was pointless) - It wasn't pointless, but that was my thought-
I do remember she got her first pair of hearing aids the last day of March 2011. We had the ABR in February and had to wait a few weeks to get earmolds etc. etc.
When we went into UNC audiology for the fitting, I was overwhelmed. They showed me how to put them on.. and I remember thinking there is NO WAY I can put these on a willing recipient and you want me to put them on my infant? Are you crazy? I have to twist them which way? How do I tell which side goes where? I have to change these tiny batteries? Will these hurt my baby? will they be too loud? Can she hear me now? How do we tell?
I had SO many questions and yet I feel like I just stood there and listened. I don't think I asked many questions, I was very overwhelmed. I remember the audiologist showing me how to put them on, and then telling me to do it... and my hands just shook. You would of thought I was doing surgery I was so nervous. I really thought I could hurt her.... I didn't want to make this hurt... would it be easier to just sign with her?
Then came the "safety" talk on the hearing aids. Don't let her ingest them... they have batteries... like real corrosive batteries that are TINY and very easily swallowed. Not a choking hazard (well kinda) but swallowed into the body. and it's happened before? a lot? AHHHH Can she die? Take her to the ER? what!! Are these hearing aids really worth it, can't we just wait until she's older? Why now as a baby!! She was only 5 months old! (well 4 months and 30 days)
Then our audiologist said, now you need to keep these on all waking hours... she will pull them off. hahahaha.... pull them off was an understatement.
I swear I spent more time putting them on her and taking them out of her mouth then she actually wore them. But it did and DOES get easier...
 |
| Chloe the day after we got her hearing aids. |
 |
| safe N sound... similar to what we had. |
For the first 3 or 4 months I think Chloe wore her aids about 2 hours a day total... I'm not kidding. For a little while I was adjusting to the idea that she couldn't hear and emotional stuff... and I just plain got so so tired of putting these aids in 5 or 10 times in an hour. NO JOKE! So I gave up some. Then as I processed everything I realized I HAVE TO JUST GET THIS DONE! It was hard, and It sucked, but she NEEDED TO HEAR so she can learn, so she can talk, so she can hear me sing to her, so she can hear me tell her I love her.
Then I found this: Those crochet headbands... and it def helped a TON!!!! But then she learned to pull that off.
 |
| another with the headband |
 |
| Headband - see the aid sticking out the side |
 | ||
| Chloe without anything but the aids... they didn't last long like this. |
The next thing I found was the Hearing Halo (link at the end of this blog)
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| Hearing Halo |
 | ||||||||
| Chloe with the Hearing Halo |
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| Hanna Andersson Pilot Caps |
Then as Chloe started leaving her aids alone and realized she liked them, she pulled them out less. But then she would randomly pull them off or lose them at a park, or store, or somewhere impossible to find.
 |
| Chloe with Ear Gear |
Or the fun stage of throwing everything away... including her aids. THAT was fun. My wonderful husband has dug through some nasty trash in search of hearing aids. We did lose one aid to the trash compactor. :( YUK Oh usually/ not always/ you get ONE replacement. We are on that replacement and pray that we don't lose them again. So then I invested in Ear Gear (pictured above). These things are great, and BRIGHT so you can find them. and they come with a clip so they usually just stay on the child. (usually.... as in she can pull them off still and throw them)
She is much much better then she used to be.. but we still pull them out if she is tired or overwhelmed. Or my favorite is when I tell her no... then she pulls them and throws them and pretends she didn't hear me. OH the attitude of a toddler. LOL
Now, mostly in the car, we chew on them. She will chew and chew and chew on everything. We lost a FM receiver (tiny) and I sometimes wonder if she ate it. But that is for another day. I have not figure out how to prevent the chewing/eating of the hearing aids, the molds, the tubes, the FM, etc.
But now we wear them 90% of waking hours.
(she pulls them out when she's ready for bed and at bath)
I hope these links help a parent that is looking for a way to keep aids on their infant.
 |
| anchor your ears... pilot caps that look great! |
http://www.etsy.com/shop/anchoryourhearing (no experience but these look great!!!!)
http://www.hannaandersson.com/search.aspx?search_for=pilot%27s%20caps&fsb=y (hanna andersson pilot cap)
http://www.gearforears.com/ (Ear Gear- great!!!!)
http://www.otocool.com/ (so fun for kids)
http://hayleighscherishedcharms.com/ (earrings and other decoratives for hearing aids/implants) SO cool and they are made by an amazing kiddo!)
Sunday, November 11, 2012
Communication... with a 2 year old :-)
So Chloe's primary form of communication to us is sign language; though we primarily use verbal with her unless she is unaided for whatever reason. Her receptive language (what she understands verbally) is very high. Sometimes it even surprises me what she understands. Then other days I think her batteries are dead (even though they aren't because I checked, yet again). Usually when we ask her to do something/give us something/or are just talking to her she responds with sign. She is very quiet and does not vocalize. It's a concern.
Back in May she said Hello (very clear) for about 5 days to a week... then she just stopped. and never said it again. She also used to say book (about 3 days), mama (one time), arff (woof) about 2 weeks, Hi (for about a month).Off and On while flipping the light switch (sometimes will say these still), Dada/dadee,( said if for about 2 or 3 weeks a month ago); then she would just stop. and never say it again.
She says up, and has been saying up for about 3 months consistently.
Well the past 3 days she is saying:
horse (sounds like "orsse) (says with sign)
ball (2 times tonight) sounds like bah (says with sign)
on and off, sometimes
up (still)
juice (uisss) (and will sign with it)
sleep and sheep (know the difference in the 2 by context) (seep or shhhhhep) (says with sign)
please (eesee) (says with sign)
water (waaawa) tonight! (says with sign)
dada dadee (it came back today...!) (says with sign)
But she has mostly been saying sleep... and often. it's pitiful.
We have recently been skipping naps on and off.
When she is tired she signs sleep (hand dragging from forehead to chin and closes her eyes) and it's really pitiful as she makes the adorable pitiful face when she does it. She will usually get her blankie and her milk and cuddle in my lap.
Well when she tells me she's sleepy in the above manner but it's 5pm, I've not been letting her cuddle in my lap and go to sleep... as I don't want to be up with her until midnight or later. and it's still early for bed. So now she does the above (blankie, milk, sign with pitiful sleepy face) and says SSSEEEEPPPP. It's the most pitiful thing ever. I feel like she's saying MOMMY don't you see me signing that I'm sleepy! she's been saying it quite often. and If i ask her if she's sleepy she will sign and say it now. I'm hoping this word doesn't go away. It's so exciting. This week she seems to be really really trying to say words. and ALL of them are with the sign.
When a child loses words, every parent's heart sinks because it's not normal... EVEN for a hearing impaired child. They take longer to get words but once they have them... they have them. Obviously we have been watching for ASD symptoms/signs; and while she has some, she doesn't have enough, and the ones she has can be explained by other things. We are certain she has SPD. Our other thought is a possible Apraxia... but at least a motor planning issue from her head to her mouth. (knows what she wants to say, but can't form the words). There are also times that she will "mouth" the words but nothing comes out.
I am very excited about this, but I hesitate. I am just really hoping she keeps these words. I have noticed the difference in these words then the ones before. Right now she is using them to communicate TO me instead of babbling a word while playing solo. she is also signing with them. She has over 40/50 signs that she understands and can produce (half of them look alike so it's a lot of context as she doesn't have the fine motor skills to produce some). She loves to communicate and sign and I think she's finally trying to add the words with it. especially when I am not understanding her sign without context. She is also combining 2 signs together. more please, mommy please, more fish, more juice, more milk, phone please, mommy phone, mommy up, and others i can't think of.
Oh another thing she did the other day... she was signing what I thought was mommy. SO i would say Oh you want mommy? and she usually will come up in my lap if that is what she wants. but yesterday she signed no and signed mommy again. and then she signed wash hands then mommy then wash hands. so I said Oh you want mommy to wash your hands? and she gave me the "no look" (I don't think she signed it that time) and signed mommy mommy mommy with more "ummph". Then it occured to me. She was signing water. (looks identical for her) so I said OH you want water (my thought: because you wash your hands with water) and she goes EESSS and signs yes and runs to the kitchen. I got her water and she drank it down. I have a very smart girl. I am about 99% sure she was signing wash hands because you use water and mommy wasn't understanding her sign for water. especially due to how excited she got when I finally "got" it. And my husband witnessed all of this... so he knows i'm not making it up. LOL She also signs milk and juice (and say uice) when she wants those spontaneously...
Every word is precious with Chloe, especially because I know how hard she is working to produce them. And Every time I hear her sweet voice I treasure it... because I'm not sure when I will hear it again. This is not due to the hearing loss and we have hopes that she will learn to talk... it will just take a lot of work. But I also am going to keep up the "total communication" approach and sign with her and respond to her signs so that she can communicate with us. She also uses flash card pictures to show us what she wants/when she wants it. Or if she is interacting with someone who is not understanding her signs, she will grab a flash card and flip to what she wants to say. She is very resourceful. I also really really want to learn fluent ASL regardless of if and when Chloe learns to talk. It's a beautiful language.
 | |
| Birthday girl! age 2 |
Back in May she said Hello (very clear) for about 5 days to a week... then she just stopped. and never said it again. She also used to say book (about 3 days), mama (one time), arff (woof) about 2 weeks, Hi (for about a month).Off and On while flipping the light switch (sometimes will say these still), Dada/dadee,( said if for about 2 or 3 weeks a month ago); then she would just stop. and never say it again.
She says up, and has been saying up for about 3 months consistently.
Well the past 3 days she is saying:
horse (sounds like "orsse) (says with sign)
ball (2 times tonight) sounds like bah (says with sign)
on and off, sometimes
up (still)
juice (uisss) (and will sign with it)
sleep and sheep (know the difference in the 2 by context) (seep or shhhhhep) (says with sign)
please (eesee) (says with sign)
water (waaawa) tonight! (says with sign)
dada dadee (it came back today...!) (says with sign)
But she has mostly been saying sleep... and often. it's pitiful.
We have recently been skipping naps on and off.
When she is tired she signs sleep (hand dragging from forehead to chin and closes her eyes) and it's really pitiful as she makes the adorable pitiful face when she does it. She will usually get her blankie and her milk and cuddle in my lap.
Well when she tells me she's sleepy in the above manner but it's 5pm, I've not been letting her cuddle in my lap and go to sleep... as I don't want to be up with her until midnight or later. and it's still early for bed. So now she does the above (blankie, milk, sign with pitiful sleepy face) and says SSSEEEEPPPP. It's the most pitiful thing ever. I feel like she's saying MOMMY don't you see me signing that I'm sleepy! she's been saying it quite often. and If i ask her if she's sleepy she will sign and say it now. I'm hoping this word doesn't go away. It's so exciting. This week she seems to be really really trying to say words. and ALL of them are with the sign.
When a child loses words, every parent's heart sinks because it's not normal... EVEN for a hearing impaired child. They take longer to get words but once they have them... they have them. Obviously we have been watching for ASD symptoms/signs; and while she has some, she doesn't have enough, and the ones she has can be explained by other things. We are certain she has SPD. Our other thought is a possible Apraxia... but at least a motor planning issue from her head to her mouth. (knows what she wants to say, but can't form the words). There are also times that she will "mouth" the words but nothing comes out.
I am very excited about this, but I hesitate. I am just really hoping she keeps these words. I have noticed the difference in these words then the ones before. Right now she is using them to communicate TO me instead of babbling a word while playing solo. she is also signing with them. She has over 40/50 signs that she understands and can produce (half of them look alike so it's a lot of context as she doesn't have the fine motor skills to produce some). She loves to communicate and sign and I think she's finally trying to add the words with it. especially when I am not understanding her sign without context. She is also combining 2 signs together. more please, mommy please, more fish, more juice, more milk, phone please, mommy phone, mommy up, and others i can't think of.
Oh another thing she did the other day... she was signing what I thought was mommy. SO i would say Oh you want mommy? and she usually will come up in my lap if that is what she wants. but yesterday she signed no and signed mommy again. and then she signed wash hands then mommy then wash hands. so I said Oh you want mommy to wash your hands? and she gave me the "no look" (I don't think she signed it that time) and signed mommy mommy mommy with more "ummph". Then it occured to me. She was signing water. (looks identical for her) so I said OH you want water (my thought: because you wash your hands with water) and she goes EESSS and signs yes and runs to the kitchen. I got her water and she drank it down. I have a very smart girl. I am about 99% sure she was signing wash hands because you use water and mommy wasn't understanding her sign for water. especially due to how excited she got when I finally "got" it. And my husband witnessed all of this... so he knows i'm not making it up. LOL She also signs milk and juice (and say uice) when she wants those spontaneously...
Every word is precious with Chloe, especially because I know how hard she is working to produce them. And Every time I hear her sweet voice I treasure it... because I'm not sure when I will hear it again. This is not due to the hearing loss and we have hopes that she will learn to talk... it will just take a lot of work. But I also am going to keep up the "total communication" approach and sign with her and respond to her signs so that she can communicate with us. She also uses flash card pictures to show us what she wants/when she wants it. Or if she is interacting with someone who is not understanding her signs, she will grab a flash card and flip to what she wants to say. She is very resourceful. I also really really want to learn fluent ASL regardless of if and when Chloe learns to talk. It's a beautiful language.
Saturday, November 10, 2012
The schedule......
For a typical child the age of 2... their week consist of play dates, parks, grocery shopping, naps, and meal times.
They play with their peers and run around the park falling and climbing everything. If they have a "weekly" appointment it's usually a play date with some other friends. The occasional pediatric visit for "well-baby" checks, maybe a run to the doctor when cold season starts.
As a parent of any 2 year old you feel overwhelmed, unable to keep up with the toys and laundry. Your child has so much energy and seems to "undo" all your "dones" but it's okay and it's fun.
For Chloe, she LOVES life. You will not meet a happier two year old. She hardly has tantrums and is easy going for the most part... aside from some typical two year old not wanting to share with her sister ahhhh That's my TOY STUFF.
(I know I am very very blessed for this)
But when you have a child that is hearing impaired you add therapies, when you have a premature infant, you may add therapies, when you have a child with any neurological condition, you add therapies.
Here is our "typical" week or just therapies/school.
This coming week we have an audiology appt., a meeting with our service coordinator and a specialist appt. to get fitted for shoe inserts. I also have some insurance paper work to get done/send out. yuk ( I hate paper work ).
Chloe's school is a toddler preschool that focuses on speech/oral for communication disorders. the other children in her class are either implanted or wear hearing aids. It's an amazing program and we LOVE it. (she thinks it's the best thing ever).
You may look at this schedule and think we are "pushing" our child too much... but in all reality we are not. She looks forward to everything (except PT) and sometimes would rather run around during feeding. But "therapies" are fun, and I am SO thankful to all of our team that my child enjoys learning and "working" on things. They have made it fun and enjoyable. Arya (my 9month old) even seems to like them. As she gets to be a spectator and absorb all the extra language.
The hard thing as a parents is trying to get things done. Trying to keep up with laundry and dishes and dinner. We eat on the go more then we want/and can afford. and we usually have piles of clean and dirty clothes. I have also recently taken advantage of a online grocery ordering service through Harris Teeter. (you order your food online and it's ready to be picked up the next day (or same day if you do it early) ) It only cost $5 each trip or about 17.00 a month (30 days of unlimited). It actually saves me money because I don't end up buying extra stuff and I don't forget half my list because my kids are screaming.
I also once a month try and make a large batch of frozen meals that I can throw into a crockpot from the freezer. I will post those recipes soon. It reduces pots and pans and saves time when we are getting home late.
My friends sometimes wonder why I don't come to play dates or hang out... ever. and the truth is there are many reason why.
They play with their peers and run around the park falling and climbing everything. If they have a "weekly" appointment it's usually a play date with some other friends. The occasional pediatric visit for "well-baby" checks, maybe a run to the doctor when cold season starts.
As a parent of any 2 year old you feel overwhelmed, unable to keep up with the toys and laundry. Your child has so much energy and seems to "undo" all your "dones" but it's okay and it's fun.
For Chloe, she LOVES life. You will not meet a happier two year old. She hardly has tantrums and is easy going for the most part... aside from some typical two year old not wanting to share with her sister ahhhh That's my TOY STUFF.
(I know I am very very blessed for this)
But when you have a child that is hearing impaired you add therapies, when you have a premature infant, you may add therapies, when you have a child with any neurological condition, you add therapies.
Here is our "typical" week or just therapies/school.
- Monday : As of right now this is the day I reserve for appointments/specialist as much as possible.
- Tuesday: school from 9am-1130am Parent speech session follows.
- Wednesday: Speech and feeding therapy. / Developmental Therapy
- Thursday school again 9a-1130a / teacher of the deaf/HOH in the afternoon
- Friday: Physical therapy in the AM.
- Saturday: "fun" day and we go to gymnastics.
- Sunday: church/at home day.
This coming week we have an audiology appt., a meeting with our service coordinator and a specialist appt. to get fitted for shoe inserts. I also have some insurance paper work to get done/send out. yuk ( I hate paper work ).
Chloe's school is a toddler preschool that focuses on speech/oral for communication disorders. the other children in her class are either implanted or wear hearing aids. It's an amazing program and we LOVE it. (she thinks it's the best thing ever).
You may look at this schedule and think we are "pushing" our child too much... but in all reality we are not. She looks forward to everything (except PT) and sometimes would rather run around during feeding. But "therapies" are fun, and I am SO thankful to all of our team that my child enjoys learning and "working" on things. They have made it fun and enjoyable. Arya (my 9month old) even seems to like them. As she gets to be a spectator and absorb all the extra language.
The hard thing as a parents is trying to get things done. Trying to keep up with laundry and dishes and dinner. We eat on the go more then we want/and can afford. and we usually have piles of clean and dirty clothes. I have also recently taken advantage of a online grocery ordering service through Harris Teeter. (you order your food online and it's ready to be picked up the next day (or same day if you do it early) ) It only cost $5 each trip or about 17.00 a month (30 days of unlimited). It actually saves me money because I don't end up buying extra stuff and I don't forget half my list because my kids are screaming.
I also once a month try and make a large batch of frozen meals that I can throw into a crockpot from the freezer. I will post those recipes soon. It reduces pots and pans and saves time when we are getting home late.
My friends sometimes wonder why I don't come to play dates or hang out... ever. and the truth is there are many reason why.
- TIME and ENERGY. I am exhausted and overwhelmed most of the time. Plus play dates are always when we have a therapy. ALWAYS. and it sucks. I can never make it work out. I really would love to have some time to hang out with friends.
- There is also a part of me that hurts, and I KNOW it shouldn't. But when I hang out with "typical" children; when all these kids that are the same age are talking in sentences or even just putting a couple words together. At one point Chloe wasn't even walking and everyone else was... and even though NO ONE makes you feel bad or asks "why" you know in your head that she is behind and seeing other kids just adds salt to the wound.
- It's loud... and Chloe can't hear me. This wasn't an issue until Arya was born and I am trying to wrangle arya or nurse and Chloe is climbing something she shouldn't. or trying to run away, or doing SOMETHING that requires me to intervene but she can't hear me. So it requires me to physically go over to her. (no big deal) EXCEPT when your boob is half out while nursing. or your 9month old is pulling up on something else that she shouldn't and your 2 year old is about to leap off the back of a couch. (the FM can help this, but she sometimes doesn't listen even if she hears)
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| Chloe and mommy before bed! |
Friday, November 9, 2012
FM system and at home use.
I think as a parent of any child, we need to spend a lot of time thinking about the way our children see and hear things. We need to put ourselves in their shoes. With a typical hearing child this is hard; but then to add a hearing loss and all those aspects that you have never experienced, it becomes a WHOLE LOT harder.
We all know that during therapy session or even times when we are specifically working on something at home; we need the "optimum listening environment". - If you are new to the HOH world that means quiet... and not just not music or TV... but quiet as in the A/C unit turned off, the laundry not running, the dish washer off... Hearing aids are wonderful... but in this aspect they work too well! :-) If you don't believe me... do a "sound check" with the stethoscope thing and walk around your house in "normal" environment. I was listening one day in the living room and could not for the life of me figure out this annoying buzzing and humming. It was the fan in the master bedroom.
I am realistic and know that there is no way you can never run the laundry and dish washer... and that in the summer you will need a fan on, or in the winter the heat will need to come on to keep your home livable. So what do we do? Our children need to hear us talking... even if we are not talking to them. This is how language is learned... a typical hearing child hears everything. they learn social manners, sarcasm, vocabulary, etc from what we tell them, but also what they just happen to hear. We wonder where 3 and 4 year olds get some of the things they say, and it's from those distant conversations etc. Children are the sneakiest eavesdropping people you will ever meet!!!
So how does that translate to a HOH child that is aided or implanted. First it means they usually only know/learn what we teach them. Which is great in some ways (you know that foul word you muttered when you tripped over the legos yet AGAIN) they don't hear that. But you know that conversation about politics you are having with you husband. they don't hear that either. So they are missing out on LOTS of language opportunities. This puts the responsibility onto us to tell them and talk to them about EVERYTHING to give them a wide range of vocabulary.
We know that education success depends on reading... well you can know how to "read" all you want, but if you don't have the vocabulary the words are pointless and meaning less.
aka:
john leppa on a leta then ate lomy.
You just read that... but what does that mean?
John sat on a chair and then ate an apple.
I hope that helps clarify WHY vocabulary is the most critical aspect for our children.
Now, how do we make sure they are hearing the maximum amount of language a day.
Places to use an FM
All in all:
If you can get an FM - get it! and then USE IT OFTEN!
If you can't - reduce background noise as much as you can. remember to try and talk "close" to your child often.
We all know that during therapy session or even times when we are specifically working on something at home; we need the "optimum listening environment". - If you are new to the HOH world that means quiet... and not just not music or TV... but quiet as in the A/C unit turned off, the laundry not running, the dish washer off... Hearing aids are wonderful... but in this aspect they work too well! :-) If you don't believe me... do a "sound check" with the stethoscope thing and walk around your house in "normal" environment. I was listening one day in the living room and could not for the life of me figure out this annoying buzzing and humming. It was the fan in the master bedroom.
I am realistic and know that there is no way you can never run the laundry and dish washer... and that in the summer you will need a fan on, or in the winter the heat will need to come on to keep your home livable. So what do we do? Our children need to hear us talking... even if we are not talking to them. This is how language is learned... a typical hearing child hears everything. they learn social manners, sarcasm, vocabulary, etc from what we tell them, but also what they just happen to hear. We wonder where 3 and 4 year olds get some of the things they say, and it's from those distant conversations etc. Children are the sneakiest eavesdropping people you will ever meet!!!
So how does that translate to a HOH child that is aided or implanted. First it means they usually only know/learn what we teach them. Which is great in some ways (you know that foul word you muttered when you tripped over the legos yet AGAIN) they don't hear that. But you know that conversation about politics you are having with you husband. they don't hear that either. So they are missing out on LOTS of language opportunities. This puts the responsibility onto us to tell them and talk to them about EVERYTHING to give them a wide range of vocabulary.
We know that education success depends on reading... well you can know how to "read" all you want, but if you don't have the vocabulary the words are pointless and meaning less.
aka:
john leppa on a leta then ate lomy.
You just read that... but what does that mean?
John sat on a chair and then ate an apple.
I hope that helps clarify WHY vocabulary is the most critical aspect for our children.
Now, how do we make sure they are hearing the maximum amount of language a day.
- TALK and TALK and TALK to them.
- explain and repeat and explain some more.
- use adjectives- and synonyms (becomes a walking thesaurus)
- FM SYSTEM- because if you are talking to them and they can't hear you... what is the point!
Places to use an FM
- School
- Home during play/meals etc.
- grocery shopping - this is a prime vocabulary lesson... walk around and show everything to your child.
- eating in public... public places are loud and overwhelming. I find it impossible to communicate with my daughter if I don't have the FM on. She can't hear me, she can't hear anything.
- parks - distance reduces the clarity of the hearing aid/implant.
All in all:
If you can get an FM - get it! and then USE IT OFTEN!
If you can't - reduce background noise as much as you can. remember to try and talk "close" to your child often.
About Chloe and our family.
We recently have determined she has SPD - sensory seeking. and when she was born we found out that she has a partial agenesis of the corpus callosum. She just turned 2 years old in November. :-)
Chloe was premature - previous 30wker. 2lb 5oz at birth.
I am going to focus less on the medical aspect and more on the role as parents and ways to support our children.
I also have a 2nd child, Arya who is almost 9months old now. :-) she is typical hearing and meeting milestones early.
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