A few posts ago I mentioned that AJ's teacher wanted to explore a specific curriculum for AJ. The curriculum is called Every Move Counts. The entire school team that works with AJ met with another district EI teacher who uses the curriculum to discuss the program, the assessment,what it includes, and AJ (of course) this past Tuesday. It was, apparently, a very productive meeting.
The first part is to conduct a video assessment of AJ. It will be a 30 minute assessment where they take him through multiple sensory experiences. The assessment will be on Monday. The team will review the video that afternoon after school, and the following Monday we will watch the video along with AJ's team here at our home during our monthly home visit. We are anxious to see what this assessment will show not only us, but AJ's school team. While I know I don't need to say it, I am thankful every day for AJ's school, his program, and his team. They continually go above and beyond to help my son. That is priceless.
This curriculum was suggested since AJ is making gains in every area except communication.
This fact is literally, breaking my heart.
I find such odd parallels in AJ's adoption journey and AJ's cochlear implant journey. We spent so much time defending the Guatemalan adoption process, defending his small size, so much time creating a pretty, happy story. So much time explaining facts and how it would be when he came home. Giving rules and sharing normal expectations.
When we were anxiously awaiting AJ's CI surgery, we spent months defending our decision, trying to explain how a cochlear implant works. Giving repititive corrections about when he would hear and how he would hear. Providing a "loose" timeline of when he would start understanding speech, making sounds, and hopefully talking. So much time creating a pretty, happy story. Giving rules and sharing normal expectations.
I think its safe to say that Jeremy and I are no longer allowed to have normal expectations.
While we never thought his cochlear implant was a "fix", we certainly had what we thought were very realistic expectations. AJ is a smart little boy. So why isn't he making sounds or babbling yet? Note: I'm not saying we think he should be saying 4 word sentences. This is a realistic question. At this point, 8 months post-activation, we should be seeing more. His auditory gains are pretty much on point, but whats with the lack of communication? There is no verbal, no signing, really. AJ's preschool program allows us to be around a lot of other kiddos with CIs (and HAs), which is wonderful. I smile each time I see the older grade schoolers running to the office in the morning, some with CIs or HAs and some with neither, and its just the norm. But it also shows me just how far behind AJ is. Its like his class is running through a jungle, some fast, some slow, and AJ's stuck in the quicksand.
At the back of my head is this stupid chromo testing. I called the insurance verifier at the Child Development Center to see if she had heard anything. Turns out we have the one of the slowest insurances to respond. Fantastic. I was told that T19 will pay for it, but we need the approval or denial from our primary first. Sound familiar?
What if there is something else going on? Maybe his brain is not functioning correctly. I hate to say it, but there it is. Are some receptors not working? While I know the past is impossible to change, all of this had made me yearn for a different experience. FOR AJ, not for me. I wish we could have been there from the beginning, right after his birth. Spoke to his birthmom about her pregnancy. Spoke to the doctors after he transferred to the hospital. Been with him in the NICU. We'd know what happened. It frustrated me to no end that we don't know. What happened while you were in Guatemala? A question that will remain unanswered.
AJ's activation came at an odd time. He phased out of Birth to 3 just 2 months after activation. He had less speech therapy than I would have liked. Why didn't I realize this then? Should we have dropped the sign? All this time and he only has one sign does consistently. Sure we've gotten others, but not they are not consistent. signing now? Should we not focus on signing so much? Is it motor or cognitive? What he understands auditorily is passing up the signs he knows. Sometimes he has difficulty using his vision to pay attention to a task, etc. Should I have him in private therapy outside of school. What can we do different? WHAT AM I MISSING? Pardon my babbling. It helps when its not all in my head.
No one wants to hear that their child is not doing something. Communication is essential to life. Communication is critical. This is a big issue, this isn't "Johnny doesn't like to share." I'm terrified about all of this. Yes, Mel, I used that word. I really am. I don't have the answers, and that frustrates the *#@( out of me.
Showing posts with label hearing loss. Show all posts
Showing posts with label hearing loss. Show all posts
Friday, January 8, 2010
Sunday, December 6, 2009
An Intense Blur
PT: For the last few PT sessions, AJ's left leg has been considerably tight. His PT is concerned about this, as are we. She was instantly able to tell we had a lot of family things going on over Thanksgiving weekend and didn't get as much massage in as usual. Unreal. AJ has been growing, as he is all legs right now. Even so, he's due for a HUGE growth spurt. We are not thrilled, to say the least. AJ has and will continue to have severe growing pains. It is possible he will lose the ability to walk. We knew this was a possibility, but have a different outlook on it now that its staring us directly in the face. He continually amazes his PT by his ease with standing back up when he falls down even when his tone is kicking in.
We have a plan of action. We are....oh, whats the word. Avoiding? Maybe. I guess we'll go with that. We are avoiding intervention at this point. Meaning, we are doing what we can before turning to botox or surgery. We have increased the width of his kinescio tape, which is working more "magic". We are massaging him, as much as possible. Even when I carry him facing forward, I'm massaging his hammies. We are also continuing the regular exercises, such as the "foot wiggle" and "runner's stretch". We have created bolsters (for him to climb over) out of round oatmeal containers and duct tape. We have made balance beams out of cardboard. We are tossing a preferred item (as bait) and having him crawl over us to get to it. WE MUST KEEP HIM MOBILE AND AMBULATORY. Don't get me wrong, it is terrifying to hear someone say "Your son may stop walking." But I am thankful that we have asked the right questions and kept ourselves in the loop regarding AJ treatment. That makes it a team effort, and a bit less scary.
AJ's CP is a tricky thing. Because his CP is mild, it can often seem non-existent to an onlooker. People often forget AJ is 3.5 years old. He doesn't move around like a typical 3.5 year old. Just because he is walking, doesn't automatically mean he will continue to walk. Will Jeremy and I do everything we can to keep him mobile, absolutely. Are we confident we can do so? With the help of his PT and physical medicine doctor, absolutely. As AJ grows, this will be a constant battle. For some reason the magic age seems to be 15, so maybe that will be his last growth spurt. PT/OT sessions are on Mondays, so I'm anxious to see what they have to say tomorrow. I think his tone has improved over the week, we shall see.
On a positive note: AJ is getting out of bed with ease and much faster. He can climb off the couch at the speed of lightening. I also witnessed him doing the "Captain Morgan" stance, with his right foot on a box and his left straight on the floor holding his body weight.
OT: AJ has been posturing A LOT lately. What is posturing? When he sits on the floor with his legs out in front of him, the left leg is slightly bent upwards, so it is not relaxed (think upside-down "V"). His left arm also seems to pull in to what I call "typical CP hand placement". I've found us using his Benek hand splint a lot more and catching his thumb resting under his fingers. Not good. We're keeping an eye on it, stretching and massaging his arms as much as possible and doing lots of fine motor (finger friendly) activities. Currently, OT's focus has been dressing. Which is going, eh, so-so. He can definitely take things off, like hats, mittens, shirt (if you bring it up to his shoulders), pants, and socks. He tries to help with his AFOs and shoes. He's getting better at "ripping" the velco straps back on his AFOs when its time to take them off. A lot of hand over hand at this point, but he gets the concept. He's struggling with jacket skills. We've added rings or small key chains to his jackets so he can learn to pull up the zipper himself. I'm thinking about making him a felt board with snaps/velcro/zippers on it, just to practice. He still hasn't got quite enough balance to be able to pull his pull-up or pants down himself in standing position. He can get his pants off sitting down, fancy that.
AJ learned (after just 2 hand-over-hand experiences) to give his Daddy HIGH FIVE! YAY!! Bonus-he can do it with both hands. Bummer-he only does it for Daddy.
He showed he could reach his left arm (solo) above his head, straight, without his body being in a funky posture. I was amazed. He picked up corn from his corn bin and sprinkled it down on himself. With his left arm/hand! He can do it with the right too, but whatever. :) He's also starting to put puzzles pieces in (not in the right spots, but its effort) after he's taken them out. He also stacked 5 blocks on top of a tower of blocks already 8 blocks tall. And it did not fall. His reach and placement was that controlled.
Speech/CI: We have our first non-cooing sounds! AJ said "AH" and "OW" (as in ow, I cut my finger) on Wednesday during his speech session at school. Since, we've heard both sounds A LOT. He was definitely playing with his voice today-just to hear himself "talk". He's also starting to move his mouth to imitate-or try imitating-your mouth movements. Its hard to explain. Its different, but at least we know its a good different!
We spend Black Friday afternoon at Urgent Care with AJ. Diagnosis: Double ear infections. He's been ripping his implant off, so this may have played a factor. Well, we know it did for a short time. Certain tones of voice, loud noises, or the dogs barking were really bothering him. Then he displayed the classic signs and we knew it was an ear infection.
He's still ripping off his implant. Its a behavior thing. He's getting a power trip from knowing if he pulls it off he gets something from it. Grrrrrr. It has decreased, so thats good. I think he only did it a few times today. Add this to the list of things we are keeping an eye on.
School: I never did write a separate post detailing AJ's IEP review meeting and parent/teacher conferences. Our IEP review meeting went well. One change was made to his IEP: AJ needs 1:1 instruction at all times. Best of all: His IEP allows him to attend Lowell until June of 2010. Ironically, Jeremy and I were thrilled with this news. We were a bit concerned we'd have to meet every quarter and have the same anxiety three more times. Other's didn't seem so excited. There is no "pass" that will just allow AJ to continue attending Lowell. Actually, there is. It's called MOVE TO WAUKESHA. At least four other kiddos and their families in the TC and AO programs at Lowell have moved to Waukesha from other school districts to make sure their child can attend this program. IT IS WELL WORTH IT.
Our parent teacher conference was helpful. AJ's school SLP, PT, and OT were kind enough to attend our conference with AJ's teacher. We left with many strategies/ideas/activities to help bridge AJ's learning at school to home. I had to pinch myself that night though. Am I really a Mom, going to my son's first parent teacher conference? I guess so.
AJ seems to be paying more attention to his peers. He's doing something new every day. Transitions from activity to activity have once again become difficult. We are working on strategies with the school team to make these transitions smoother again. I am so thankful his team at school is patient, kind, and understanding. Although it is hard to hear he had a bad day, it is reassuring to know that he is with a team that will wipe the slate clean and start anew the following day.
Feeding/Speech Therapy: We have another follow-up appointment next week at the GI Clinic. My stomach is already in knots. Not only just because its another weight check, but because he had ear infections, which caused a lack of regular appetite and liquid intake for a few days. I'm not going to lie, I am genuinely freaked out this time. We are waiting on the report to be written regarding the results and recommendations per his swallow study in early November. Once we receive an OK from insurance, we'll beginning feeding therapy again. Currently, I'm considering buying stock in Z-Vibe batteries.
Social/Emotional/Cognitive/Language: As I mentioned above, AJ is paying more attention to his peers. He knows what walking down the hall means at school-time to go to the doors and go outside to find Mommy. He made the connection between a soft-plush vibrating turtle and Daddy's XBOX-they both have a vibration so he put the turtle on top of the XBOX. He knows the auditory cue for "sit down". He has signed "eat", "please", and "bath" (approximation sign). He is playing with his voice. His memory skills improve daily. He knows both how to wash his hands at the sink and how to wipe his hands off on a wet towel. He holds his hands up for a dry towel when you tell him "all done" with washing hands. AJ's emotional responses have become different, with more variety. He understands the auditory cue "ah ah ahhhh^hhhh" (You know, when you reach for the hot stove and your Mom would say "ah ah ahhhh^hhhh"?? That.) That amazes me, as its not even a true "word" cue.
I'm sure there is more that I am missing. Let's face it, these days, my brain is a fuzzy blur. But I think thas enough paragraphs to supply the jist.
This time of year is always hard. It sort of hit me unexpectedly this time around though. AJ was diagnosed with bilateral profound hearing loss on 11/28/07 and cerebral palsy on 12/5/07. Two years ago, my Dad passed away shortly after that neurology appointment when we received the CP diagnosis. I found myself crying over cheeseburgers while driving AJ to school last week. You'd have to know my Dad to understand that last sentence. I wish my Dad was here to giggle at my perfectionism, tell me to keep things simple, and reassure me that everything was going to be OK. He was so good at that. That whole period in our lives is so vivid yet so out of focus. An intense blur. We all made it through, somehow, as I'm sure we'll make it through these anniversaries. Not much to celebrate per se, but certainly memorable moments in our lives.
We have a plan of action. We are....oh, whats the word. Avoiding? Maybe. I guess we'll go with that. We are avoiding intervention at this point. Meaning, we are doing what we can before turning to botox or surgery. We have increased the width of his kinescio tape, which is working more "magic". We are massaging him, as much as possible. Even when I carry him facing forward, I'm massaging his hammies. We are also continuing the regular exercises, such as the "foot wiggle" and "runner's stretch". We have created bolsters (for him to climb over) out of round oatmeal containers and duct tape. We have made balance beams out of cardboard. We are tossing a preferred item (as bait) and having him crawl over us to get to it. WE MUST KEEP HIM MOBILE AND AMBULATORY. Don't get me wrong, it is terrifying to hear someone say "Your son may stop walking." But I am thankful that we have asked the right questions and kept ourselves in the loop regarding AJ treatment. That makes it a team effort, and a bit less scary.
AJ's CP is a tricky thing. Because his CP is mild, it can often seem non-existent to an onlooker. People often forget AJ is 3.5 years old. He doesn't move around like a typical 3.5 year old. Just because he is walking, doesn't automatically mean he will continue to walk. Will Jeremy and I do everything we can to keep him mobile, absolutely. Are we confident we can do so? With the help of his PT and physical medicine doctor, absolutely. As AJ grows, this will be a constant battle. For some reason the magic age seems to be 15, so maybe that will be his last growth spurt. PT/OT sessions are on Mondays, so I'm anxious to see what they have to say tomorrow. I think his tone has improved over the week, we shall see.
On a positive note: AJ is getting out of bed with ease and much faster. He can climb off the couch at the speed of lightening. I also witnessed him doing the "Captain Morgan" stance, with his right foot on a box and his left straight on the floor holding his body weight.
OT: AJ has been posturing A LOT lately. What is posturing? When he sits on the floor with his legs out in front of him, the left leg is slightly bent upwards, so it is not relaxed (think upside-down "V"). His left arm also seems to pull in to what I call "typical CP hand placement". I've found us using his Benek hand splint a lot more and catching his thumb resting under his fingers. Not good. We're keeping an eye on it, stretching and massaging his arms as much as possible and doing lots of fine motor (finger friendly) activities. Currently, OT's focus has been dressing. Which is going, eh, so-so. He can definitely take things off, like hats, mittens, shirt (if you bring it up to his shoulders), pants, and socks. He tries to help with his AFOs and shoes. He's getting better at "ripping" the velco straps back on his AFOs when its time to take them off. A lot of hand over hand at this point, but he gets the concept. He's struggling with jacket skills. We've added rings or small key chains to his jackets so he can learn to pull up the zipper himself. I'm thinking about making him a felt board with snaps/velcro/zippers on it, just to practice. He still hasn't got quite enough balance to be able to pull his pull-up or pants down himself in standing position. He can get his pants off sitting down, fancy that.
AJ learned (after just 2 hand-over-hand experiences) to give his Daddy HIGH FIVE! YAY!! Bonus-he can do it with both hands. Bummer-he only does it for Daddy.
He showed he could reach his left arm (solo) above his head, straight, without his body being in a funky posture. I was amazed. He picked up corn from his corn bin and sprinkled it down on himself. With his left arm/hand! He can do it with the right too, but whatever. :) He's also starting to put puzzles pieces in (not in the right spots, but its effort) after he's taken them out. He also stacked 5 blocks on top of a tower of blocks already 8 blocks tall. And it did not fall. His reach and placement was that controlled.
Speech/CI: We have our first non-cooing sounds! AJ said "AH" and "OW" (as in ow, I cut my finger) on Wednesday during his speech session at school. Since, we've heard both sounds A LOT. He was definitely playing with his voice today-just to hear himself "talk". He's also starting to move his mouth to imitate-or try imitating-your mouth movements. Its hard to explain. Its different, but at least we know its a good different!
We spend Black Friday afternoon at Urgent Care with AJ. Diagnosis: Double ear infections. He's been ripping his implant off, so this may have played a factor. Well, we know it did for a short time. Certain tones of voice, loud noises, or the dogs barking were really bothering him. Then he displayed the classic signs and we knew it was an ear infection.
He's still ripping off his implant. Its a behavior thing. He's getting a power trip from knowing if he pulls it off he gets something from it. Grrrrrr. It has decreased, so thats good. I think he only did it a few times today. Add this to the list of things we are keeping an eye on.
School: I never did write a separate post detailing AJ's IEP review meeting and parent/teacher conferences. Our IEP review meeting went well. One change was made to his IEP: AJ needs 1:1 instruction at all times. Best of all: His IEP allows him to attend Lowell until June of 2010. Ironically, Jeremy and I were thrilled with this news. We were a bit concerned we'd have to meet every quarter and have the same anxiety three more times. Other's didn't seem so excited. There is no "pass" that will just allow AJ to continue attending Lowell. Actually, there is. It's called MOVE TO WAUKESHA. At least four other kiddos and their families in the TC and AO programs at Lowell have moved to Waukesha from other school districts to make sure their child can attend this program. IT IS WELL WORTH IT.
Our parent teacher conference was helpful. AJ's school SLP, PT, and OT were kind enough to attend our conference with AJ's teacher. We left with many strategies/ideas/activities to help bridge AJ's learning at school to home. I had to pinch myself that night though. Am I really a Mom, going to my son's first parent teacher conference? I guess so.
AJ seems to be paying more attention to his peers. He's doing something new every day. Transitions from activity to activity have once again become difficult. We are working on strategies with the school team to make these transitions smoother again. I am so thankful his team at school is patient, kind, and understanding. Although it is hard to hear he had a bad day, it is reassuring to know that he is with a team that will wipe the slate clean and start anew the following day.
Feeding/Speech Therapy: We have another follow-up appointment next week at the GI Clinic. My stomach is already in knots. Not only just because its another weight check, but because he had ear infections, which caused a lack of regular appetite and liquid intake for a few days. I'm not going to lie, I am genuinely freaked out this time. We are waiting on the report to be written regarding the results and recommendations per his swallow study in early November. Once we receive an OK from insurance, we'll beginning feeding therapy again. Currently, I'm considering buying stock in Z-Vibe batteries.
Social/Emotional/Cognitive/Language: As I mentioned above, AJ is paying more attention to his peers. He knows what walking down the hall means at school-time to go to the doors and go outside to find Mommy. He made the connection between a soft-plush vibrating turtle and Daddy's XBOX-they both have a vibration so he put the turtle on top of the XBOX. He knows the auditory cue for "sit down". He has signed "eat", "please", and "bath" (approximation sign). He is playing with his voice. His memory skills improve daily. He knows both how to wash his hands at the sink and how to wipe his hands off on a wet towel. He holds his hands up for a dry towel when you tell him "all done" with washing hands. AJ's emotional responses have become different, with more variety. He understands the auditory cue "ah ah ahhhh^hhhh" (You know, when you reach for the hot stove and your Mom would say "ah ah ahhhh^hhhh"?? That.) That amazes me, as its not even a true "word" cue.
I'm sure there is more that I am missing. Let's face it, these days, my brain is a fuzzy blur. But I think thas enough paragraphs to supply the jist.
This time of year is always hard. It sort of hit me unexpectedly this time around though. AJ was diagnosed with bilateral profound hearing loss on 11/28/07 and cerebral palsy on 12/5/07. Two years ago, my Dad passed away shortly after that neurology appointment when we received the CP diagnosis. I found myself crying over cheeseburgers while driving AJ to school last week. You'd have to know my Dad to understand that last sentence. I wish my Dad was here to giggle at my perfectionism, tell me to keep things simple, and reassure me that everything was going to be OK. He was so good at that. That whole period in our lives is so vivid yet so out of focus. An intense blur. We all made it through, somehow, as I'm sure we'll make it through these anniversaries. Not much to celebrate per se, but certainly memorable moments in our lives.
Sunday, September 27, 2009
Published
Some of you may remember a post from a few weeks ago about AJ's last day in toddler group at CDHH. A few days after I posted, I received a call from the Communications Director at CDHH. She asked if they could feature AJ's experience with CDHH in the upcoming newsletter. The newsletter was just released, enjoy!
http://www.cdhh.org/fpimg/Infolink_Fall2009.pdf
http://www.cdhh.org/fpimg/Infolink_Fall2009.pdf
Saturday, January 3, 2009
Sign Me Up
The day after Thanksgiving, I randomly emailed someone at our City Hall. I knew the office was closed, but still wanted to make this particular request, so I browsed the different departments and chose what I though was most applicable. I requested information on how to have "Deaf Child" street signs placed on our road. After the weekend I received an email back, stating someone within the department must "refer" the placement of the signs. This gentleman was kind enough to do so and stated the signs would be placed as soon as their manufacturer could produce them.
Less than 2 weeks later, they were up. Our road is the "old two-lane highway". Behind our house now runs the new-four lane highway. We're out in the country, so think county road, not concrete rush-hour. Most people that FLY down our road don't bother to notice the 35 mph speed limit sign much less the Children Playing sign. We have no sidewalks, and our driveway goes right to the road. I am happy to say that I have seen a decrease in frequent flyers lately. I am hoping our signs are causing people to be a bit more aware of their speed. Although, it does make me a bit sad to think that it takes a large yellow sign with words to make a person more aware.
Why put the signs up if he's getting a cochlear implant? Because the implant does not change the fact that he is deaf. He will be ready to go out and play in the driveway and the yard this spring/summer. We want him to be as safe as possible. He can't hear Daddy say "Come Here" or the sound of truck barreling down the road. Even with a CI, if the coil slips off his head while he's playing, he won't be able to hear. In addition to the signs, I think we'll be getting some type of mesh fence/safety cones etc. to put at the end of the driveway. We saw some at ToysRUs and thought they were a great idea. Safety is a good thing....
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