We had occupational therapy again today. Today we spent the entire time with oobleck. For those of you who are unfamiliar with oobleck, it is a simple homemade substance that is made by mixing one part water with 1.5 to 2 parts cornstarch. It makes a substance by suspending the cornstarch particles in the water. The substance is pretty unique. It behaves like both a liquid and a solid. When under pressure it behaves like a solid. Otherwise is behaves like a liquid. So you can pick it up in your palm and squeeze it into a ball, but when you release the pressure a bit it drips down between your fingers like a liquid.
First we put a pile of cornstarch on a cookie sheet and let the kids explore that with their hands. That alone was a bit of a stretch for Ava because of the way the cornstarch covered her hands and was difficult to wipe off. Then we began adding water and she wanted none of it. She mostly observed for the next 20 minutes or so. Michael was hesitant, but when he began to play with it he had a blast.
I just let Ava watch me play with it. The messier my hands got the more agitated she became. She actually broke down in tears at one point when my hands were covered in it and I refused to clean them off quickly enough for her. I eventually got her to poke at it a little bit in exchange for a spoon. Once she had a spoon she had fun scooping it up and watching it drip back down onto the pan. Some would cling to the spoon and I did manage to persuade her to use a finger to push the last few remnants off the spoon.
Another thing we did was get out some markers. The children could draw on the surface of the oobleck with markers and make pictures. When it got mixed up again, the oobleck combined with the color of the markers. Ava's turned pink. Michael's ended up grey because he experimented with so many colors. We did start with yellow and then blue which combined to make green. That was fun. The markers just rinsed clean.
We will have to play with oobleck several more times over the next few weeks and try to increase Ava's tolerance of it. Does anyone have any suggestions for activities with oobleck other than simply playing with it and then coloring on it? I didn't get any pictures this time, but I definitely will next time so I can share them with you.
Showing posts with label Ava. Show all posts
Showing posts with label Ava. Show all posts
Wednesday, August 24, 2011
Tuesday, August 23, 2011
Preparing for an Evaluation - Gathering Phase
First we had our second IFSP meeting about six months after the first. Shortly thereafter we had our transition meeting to talk about the steps necessary to transition from early intervention services to the evaluation necessary to see if Ava will qualify for services from the school district.
The evaluation is supposed to take place within three months of the transition meeting and the IEP meeting (if one is necessary) should be held within 30 days of the evaluation. So a clock is ticking. Before the evaluation is held, the evaluation team has to gather a lot of information. They get information from Ava's school (her current daycare teachers). They get information from her early intervention speech therapist and occupational therapist. They get information from the Parents as Teachers program about the screenings they've done. At the transition meeting I signed a lot of forms authorizing the release of information from one person or organization to the school district so that they can begin to gather all of that information.
Of course, nothing ever goes easily and smoothly. They need to know one very simple piece of information. They want to know if Ava can hear. We know she can. When they put the tubes in her ears they did an ABR when she was still under sedation and she passed. I need to find that paperwork and get it to the school district. The ENT's office says that the hospital will have those records. So, I called the hospital and they won't even tell me if they have the information I want until I sign a release form. The release form that I got in the mail today lists several types of information I could be requesting, but the results of a hearing test is not on the form. What a pain. I just need a person to look at a folder and tell me that they have that piece of paper. Then I need to give them permission to send a copy of that piece of paper to someone else. I haven't figured out how to accomplish that yet.
I'm half tempted to just ask the Parents as Teachers program to re-screen her hearing and send that paperwork to the school district rather that try to figure out how to get the hospital to give me what I want. However, knowing my daughter, that wouldn't be simple either. It's always something isn't it?
The evaluation is supposed to take place within three months of the transition meeting and the IEP meeting (if one is necessary) should be held within 30 days of the evaluation. So a clock is ticking. Before the evaluation is held, the evaluation team has to gather a lot of information. They get information from Ava's school (her current daycare teachers). They get information from her early intervention speech therapist and occupational therapist. They get information from the Parents as Teachers program about the screenings they've done. At the transition meeting I signed a lot of forms authorizing the release of information from one person or organization to the school district so that they can begin to gather all of that information.
Of course, nothing ever goes easily and smoothly. They need to know one very simple piece of information. They want to know if Ava can hear. We know she can. When they put the tubes in her ears they did an ABR when she was still under sedation and she passed. I need to find that paperwork and get it to the school district. The ENT's office says that the hospital will have those records. So, I called the hospital and they won't even tell me if they have the information I want until I sign a release form. The release form that I got in the mail today lists several types of information I could be requesting, but the results of a hearing test is not on the form. What a pain. I just need a person to look at a folder and tell me that they have that piece of paper. Then I need to give them permission to send a copy of that piece of paper to someone else. I haven't figured out how to accomplish that yet.
I'm half tempted to just ask the Parents as Teachers program to re-screen her hearing and send that paperwork to the school district rather that try to figure out how to get the hospital to give me what I want. However, knowing my daughter, that wouldn't be simple either. It's always something isn't it?
Thursday, August 18, 2011
OT Evaluation Report
Our OT evaluation addressed two main areas: sensory and feeding. Therefore her OT report covered those two topics.
The sensory issues were addressed through a standardized sensory profile administered via parent report. Essentially, I answered a lot of questions about Ava. The profile covers auditory processing, visual processing, tactile processing, vestibular processing, oral-sensory processing, low registration, sensation seeking, sensory sensitivity, and sensation avoiding.
Ava scored in the typical range for vestibular processing, low registration, and sensory sensitivity. She also scored in the typical range for tactile processing, but the OT commented that Ava does seem to have some tactile processing hypersensitivity (doesn't play with food, play-dough, messy art materials, etc.). She responds slightly less than normal to auditory and visual inputs. She responds more than normal to oral inputs (food). She also scored high in sensation avoiding. She withdraws in group situations, avoids noisy places, avoids foods with strange textures, resists being touched by anyone other than very familiar family members, etc.
Nothing in the sensory profile was surprising. That makes sense, because the results were based upon my own observations. I am anxious to begin therapy and see how the OT recommends addressing her sensitivities.
As for feeding issues, again, the report was mostly a summary of my answers regarding Ava's food avoidances and preferences. The only new information was that her gag reflex is not overly sensitive. Again, I am interested to see where therapy takes us. The report itself didn't reveal anything earth-shattering here either.
I am mostly looking forward to beginning her OT therapy to see what that therapy will consist of and how much it helps. I want to help her with her eating issues for obvious reasons. I need to help her with the sensory issues for two reasons. The first is social. I don't want her hypersensitivity to prevent her from being able to socialize normally. The second reason is her speech. With apraxia, the greater the processing demands, the more difficult speech is for our children. So, when Ava is in an environment that is overstimulating for her, her system is so busy trying to deal with that overload, that her speech tanks. I hear her communicate so much less when we are out, when she is at school, and when we have a lot of people around. If we can start to work on that hypersensitivity to her environment, perhaps her speech will improve in these settings.
The sensory issues were addressed through a standardized sensory profile administered via parent report. Essentially, I answered a lot of questions about Ava. The profile covers auditory processing, visual processing, tactile processing, vestibular processing, oral-sensory processing, low registration, sensation seeking, sensory sensitivity, and sensation avoiding.
Ava scored in the typical range for vestibular processing, low registration, and sensory sensitivity. She also scored in the typical range for tactile processing, but the OT commented that Ava does seem to have some tactile processing hypersensitivity (doesn't play with food, play-dough, messy art materials, etc.). She responds slightly less than normal to auditory and visual inputs. She responds more than normal to oral inputs (food). She also scored high in sensation avoiding. She withdraws in group situations, avoids noisy places, avoids foods with strange textures, resists being touched by anyone other than very familiar family members, etc.
Nothing in the sensory profile was surprising. That makes sense, because the results were based upon my own observations. I am anxious to begin therapy and see how the OT recommends addressing her sensitivities.
As for feeding issues, again, the report was mostly a summary of my answers regarding Ava's food avoidances and preferences. The only new information was that her gag reflex is not overly sensitive. Again, I am interested to see where therapy takes us. The report itself didn't reveal anything earth-shattering here either.
I am mostly looking forward to beginning her OT therapy to see what that therapy will consist of and how much it helps. I want to help her with her eating issues for obvious reasons. I need to help her with the sensory issues for two reasons. The first is social. I don't want her hypersensitivity to prevent her from being able to socialize normally. The second reason is her speech. With apraxia, the greater the processing demands, the more difficult speech is for our children. So, when Ava is in an environment that is overstimulating for her, her system is so busy trying to deal with that overload, that her speech tanks. I hear her communicate so much less when we are out, when she is at school, and when we have a lot of people around. If we can start to work on that hypersensitivity to her environment, perhaps her speech will improve in these settings.
Saturday, August 13, 2011
IFSP - Transition Meeting Edition
I was pleasantly surprised by the transition meeting. Of course, my expectations were low, so I had lots of room to be pleasantly surprised.
So here's the summary of how the transition process works (here in my area, at least). Approximately six months before your child turns three a transition meeting is scheduled. You meet with your Early Childhood Service Coordinator and a representative from your local school district's special education program. (In our case our Parents as Teachers teacher was also there to give information about our specific school.) The purpose of the meeting is to familiarize you with the steps involved in transitioning from Early Childhood Services to School-Age services and to get your signature on a bunch of forms that allows the school district to talk to a variety of people (your early childhood SLP, OT, any preschool teachers you might have, any doctors that might have pertinent information, etc.).
The process, as I understand it, will go like this: About three months before Ava's third birthday I will take her to be evaluated. I will find out on that day if she will qualify for services. If she does not qualify, she will continue to get services through Early Intervention until the day before her third birthday and then it will be my responsibility to arrange (and pay for) any services I feel she might still need at that time. If she does qualify, we will hold an IEP meeting within 30 days of the evaluation to decide what services she will receive once she turns three. Then, when she turns three she will begin to receive those services.
Potential service options will be individual speech or OT sessions, a special preschool program, or both. If we get individual therapy sessions, instead of coming to our home we would bring her to our local school for those appointments. If the IEP team decides the preschool program is appropriate we would bring her to school either two or four days a week. If she gets both, the SLP and or OT would see her in the preschool classroom or possibly pull her out of class for therapy.
Because Ava's birthday is in March, there is a final twist. The IEP team might decide that it is too close to the end of the school year to transition her at that time. If so, the schools would contract with her current early childhood therapists and pay them to continue to see her until the fall.
Everyone at the meeting was very professional and extremely nice. They seemed genuinely interested in Ava and her best interests. They seemed to understand her specific issues (speech and sensory) and how they interact and effect her life. They seemed to want to help. Now we just have to wait and see how the evaluation goes and if she will qualify.
So, in summary, the transition process looks like this:
So here's the summary of how the transition process works (here in my area, at least). Approximately six months before your child turns three a transition meeting is scheduled. You meet with your Early Childhood Service Coordinator and a representative from your local school district's special education program. (In our case our Parents as Teachers teacher was also there to give information about our specific school.) The purpose of the meeting is to familiarize you with the steps involved in transitioning from Early Childhood Services to School-Age services and to get your signature on a bunch of forms that allows the school district to talk to a variety of people (your early childhood SLP, OT, any preschool teachers you might have, any doctors that might have pertinent information, etc.).
The process, as I understand it, will go like this: About three months before Ava's third birthday I will take her to be evaluated. I will find out on that day if she will qualify for services. If she does not qualify, she will continue to get services through Early Intervention until the day before her third birthday and then it will be my responsibility to arrange (and pay for) any services I feel she might still need at that time. If she does qualify, we will hold an IEP meeting within 30 days of the evaluation to decide what services she will receive once she turns three. Then, when she turns three she will begin to receive those services.
Potential service options will be individual speech or OT sessions, a special preschool program, or both. If we get individual therapy sessions, instead of coming to our home we would bring her to our local school for those appointments. If the IEP team decides the preschool program is appropriate we would bring her to school either two or four days a week. If she gets both, the SLP and or OT would see her in the preschool classroom or possibly pull her out of class for therapy.
Because Ava's birthday is in March, there is a final twist. The IEP team might decide that it is too close to the end of the school year to transition her at that time. If so, the schools would contract with her current early childhood therapists and pay them to continue to see her until the fall.
Everyone at the meeting was very professional and extremely nice. They seemed genuinely interested in Ava and her best interests. They seemed to understand her specific issues (speech and sensory) and how they interact and effect her life. They seemed to want to help. Now we just have to wait and see how the evaluation goes and if she will qualify.
So, in summary, the transition process looks like this:
- Hold transition meeting (6 months before 3rd birthday).
- Have child evaluated by school district (3 months before 3rd birthday).
- If child qualifies, hold IEP meeting (2 months before 3rd birthday).
- Transition from getting services from early childhood to getting services from school district (on 3rd birthday).
Tuesday, August 9, 2011
Hurry Up and Wait
Our OT evaluation yesterday was something of a mixed bag. It took two hours. The vast majority of that was mostly the OT asking questions and listening to my answers. We filled out one test instrument that was a parent questionnaire designed to give a "sensory profile".
We did very little hands-on work with Ava. She did teach me how to test Ava's gag reflex. That went startlingly well actually. As it turns out, Ava's gag reflex is not overly sensitive. Ava was very, very anti-social. Perhaps if Ava had been more receptive, the evaluation would have been more hands-on.
The OT observed me giving Ava lunch. She requested that I serve Ava one thing I know she likes (grapes) and one thing that she doesn't love, but she might occasionally eat (egg). Now, Ava used to eat egg when she was littler. I haven't gotten her to eat it in months. Today, she ate it with very little prompting. Why do they always do that?
And now I just wait for the results of the evaluation. It feels odd. I think somehow I thought this evaluation would provide a lot of answers and I hadn't stopped to think about the fact that I wouldn't get them right away. Silly of me. I used to do nothing but speech evaluations and so I know that tests have to be scored before the results are given. And so the next wait begins.
_______________________
In other news, we're now trying liquid oral antibiotics for the mystery ailment that's been upsetting the kittens' tummies for over three weeks now. I will be trying the first doses tonight (two different kinds). Somehow I'm not expecting this to go well at all.
We did very little hands-on work with Ava. She did teach me how to test Ava's gag reflex. That went startlingly well actually. As it turns out, Ava's gag reflex is not overly sensitive. Ava was very, very anti-social. Perhaps if Ava had been more receptive, the evaluation would have been more hands-on.
The OT observed me giving Ava lunch. She requested that I serve Ava one thing I know she likes (grapes) and one thing that she doesn't love, but she might occasionally eat (egg). Now, Ava used to eat egg when she was littler. I haven't gotten her to eat it in months. Today, she ate it with very little prompting. Why do they always do that?
And now I just wait for the results of the evaluation. It feels odd. I think somehow I thought this evaluation would provide a lot of answers and I hadn't stopped to think about the fact that I wouldn't get them right away. Silly of me. I used to do nothing but speech evaluations and so I know that tests have to be scored before the results are given. And so the next wait begins.
_______________________
In other news, we're now trying liquid oral antibiotics for the mystery ailment that's been upsetting the kittens' tummies for over three weeks now. I will be trying the first doses tonight (two different kinds). Somehow I'm not expecting this to go well at all.
Monday, August 8, 2011
All Set for OT Evaluation
Our OT evaluation is scheduled for today. My mom (who just retired last week - Congratulations Mom!) is going to watch Michael. As much as I love Michael, he is a rather overwhelming presence when around. I need to be able to focus on Ava and the occupational therapist and on answering her questions rather than on trying to keep Michael quiet and out of the way.
In one way, I am excited. I know speech pathology. I know Apraxia. Those areas are familiar and comfortable. I know very little about occupational therapy and I am excited professionally about getting to watch an occupational therapist at work. Even as a mother I am excited. Ava will finally be getting an assessment and hopefully some help to address some of her other needs. I always had some idea of how to address her speech issues, but I don't know how to help her with her sensory ones. So I am excited to be getting some help for her in that area.
When the OT called to set up a time for her evaluation we chatted for a few minutes. One of the things she asked me was if I thought Ava had a particularly sensitive gag reflex. (She asked the question in the context of her food pickiness.) I told her I hadn't really observed Ava gagging while eating because she won't even try things she thinks she won't like. So, the OT said, "Do you think she'll let me check her gag reflex?" Hahahahahahaha. Oh my. What I said, very politely, was, "We can try." What I thought was, "Hell, no!" So, I think we'll be looking at a very... interesting hour later today.
In one way, I am excited. I know speech pathology. I know Apraxia. Those areas are familiar and comfortable. I know very little about occupational therapy and I am excited professionally about getting to watch an occupational therapist at work. Even as a mother I am excited. Ava will finally be getting an assessment and hopefully some help to address some of her other needs. I always had some idea of how to address her speech issues, but I don't know how to help her with her sensory ones. So I am excited to be getting some help for her in that area.
When the OT called to set up a time for her evaluation we chatted for a few minutes. One of the things she asked me was if I thought Ava had a particularly sensitive gag reflex. (She asked the question in the context of her food pickiness.) I told her I hadn't really observed Ava gagging while eating because she won't even try things she thinks she won't like. So, the OT said, "Do you think she'll let me check her gag reflex?" Hahahahahahaha. Oh my. What I said, very politely, was, "We can try." What I thought was, "Hell, no!" So, I think we'll be looking at a very... interesting hour later today.
Thursday, July 28, 2011
Do you think we'll look back...?
Do you think we'll look back ten years from now and wish we could tell our past selves to relax? Tell that past self that it really will all be ok?
Even now, only six months after our first official evaluation, I wish I could go back to the me that was sitting in front of the computer writing that first post while wiping tears away that things will get better soon. The worst of my fears on that day are not going to come true. Ava can talk. She does not have severe apraxia and we're seeing relatively quick progress. The intensity of those first emotions does fade. Life has moved forward and we have found a new equillibrium.
We are raising a daughter for whom talking is difficult rather than a natural miracle like it is for the rest of us. She needs help and practice to learn to talk and that process will be measured in years rather than in months. I've accepted that. It is simply our new reality. Our lives are so complex and are made up of so many events that the speech issue is really only one small part of the whole. And the whole picture of our lives is a good one. I really do believe that in my heart.
Then there are the fears that creep in late at night, or after a particularly difficult day. At those time I wonder if I'll look back at the day I wrote this post and wish I could tell her that there are unanticipated struggles ahead and that I need to be more vigilant.
Initially, I was nothing but grateful over the extra OT services Ava will be receiving. As it sinks in that she is receiving those services because experienced professionals believe that there is a whole additional area of concern I had previously missed, I find myself struggling again to adjust.
I can wrestle with all these thoughts endlessly, but the bottom line is that Ava is always the same. She is my daughter. She loves me and I love her. A new opinion, service, or diagnosis does not change who she is. Like all other children she needs love, space, encouragement and excellent teachers to help her learn and grow into the best person she can be. I will continue to provide her with those things to the best of my ability and let the future take care of itself.
Even now, only six months after our first official evaluation, I wish I could go back to the me that was sitting in front of the computer writing that first post while wiping tears away that things will get better soon. The worst of my fears on that day are not going to come true. Ava can talk. She does not have severe apraxia and we're seeing relatively quick progress. The intensity of those first emotions does fade. Life has moved forward and we have found a new equillibrium.
We are raising a daughter for whom talking is difficult rather than a natural miracle like it is for the rest of us. She needs help and practice to learn to talk and that process will be measured in years rather than in months. I've accepted that. It is simply our new reality. Our lives are so complex and are made up of so many events that the speech issue is really only one small part of the whole. And the whole picture of our lives is a good one. I really do believe that in my heart.
Then there are the fears that creep in late at night, or after a particularly difficult day. At those time I wonder if I'll look back at the day I wrote this post and wish I could tell her that there are unanticipated struggles ahead and that I need to be more vigilant.
Initially, I was nothing but grateful over the extra OT services Ava will be receiving. As it sinks in that she is receiving those services because experienced professionals believe that there is a whole additional area of concern I had previously missed, I find myself struggling again to adjust.
I can wrestle with all these thoughts endlessly, but the bottom line is that Ava is always the same. She is my daughter. She loves me and I love her. A new opinion, service, or diagnosis does not change who she is. Like all other children she needs love, space, encouragement and excellent teachers to help her learn and grow into the best person she can be. I will continue to provide her with those things to the best of my ability and let the future take care of itself.
Wednesday, July 27, 2011
Our First, and Only, 6-Month IFSP Meeting
Unlike IEPs, IFSPs are reassessed twice a year. Our 6-month IFSP meeting was held Monday morning. I was nervous going into that meeting. Ava has made great strides and I was a little concerned they would tell me that she didn't qualify for services any more.
As it turns out, I didn't need to worry quite so much about that. I was careful to stay focued on her needs rather than her successes, but I did not exaggerate her needs. The main ones I see right now (in no particular order) are:
So, we reviewed her speech progress and discussed her speech needs rewriting her goals and continuing her in speech therapy for an hour a week. If our therapist's schedule permits, she will actually see Ava at school in order to facilitate her communication and speech there. I will obviously continue to work with Ava here at home.
The big story of the IFSP meeting, however, is that we veered off into an entirely new direction. My service coordinator sent me a questionaire ahead of time and one of the questions was about my areas of concern for Ava. Almost on a whim, I wrote in a couple of non-speech items that have been bugging me for a while now. Honestly, I was expecting to bring them up and be reassured that they were within the normal range for kids her age. That's not exactly the way it went.
I've noticed that Ava is really sensitive to noise. The sound of the washer or dryer running will bother her enough while she is watching television in another room for her to leave the tv, run around the corner and down a hallway and shut the door to the laundry room. The flushing of the toilet in a restroom bothers her. Her hands clap over her ears and she recites, "loud, loud, loud" until the sound stops. Her father's electric razer will get the same reaction. We took the kids to their first movie (Winnie the Pooh) and I spent the entire time with my hands over her ears trying to reassure her that it really was all right.
Another issue is her picky eating. It is getting worse and worse and seems to be related to texture. She doesn't like to touch things that are messy and if her hands do get messy she immediately wants a napkin. She doesn't like to be touched or restrained. When other children approach her she gets really upset and reacts almost as if she's been hit. Washing her hair and face is pretty traumatic because she reacts so poorly to the washcloth and tilting her head back.
Well, to make a long story a bit shorter, we've added an hour of occupational therapy to her services. They feel like some OT might make a big difference with her feeding and bathing issues and other sensitivities.
I've never been closely involved with occupational therapy services before and so this will be a whole new area for me. I am hopeful that they can help Ava to be less sensitive and to experience the world a little more comfortably and fully. That would be such a gift to her.
All in all, a useful IFSP meeting. Next up: transition meeting and scheduling our first occupational therapy session.
As it turns out, I didn't need to worry quite so much about that. I was careful to stay focued on her needs rather than her successes, but I did not exaggerate her needs. The main ones I see right now (in no particular order) are:
- The more stress she's under, the more difficulty she has communicating. So, when she's upset or hurt, that is when she tends to lose her words. Those moments are exactly the ones in which you need for her to communicate the most.
- Although Ava is making many communication attempts at home, she is reluctant or unable to communicate at school with her teachers and peers. At school she'd often rather go without than try to tell someone what she needs. At school she doesn't even try to talk to the other children in the classroom. That situation just breaks my heart and I desperately want to see improvement there.
- As an SLP, I continue to recognize the comprehensiveness of the speech delay in terms of intelligibility, but early intervention won't really write goals for specific speech sounds or intelligibility issues because there is such a wide range of normal at this age. That doesn't make it less valid, just something out of the scope of early intervention apparently.
So, we reviewed her speech progress and discussed her speech needs rewriting her goals and continuing her in speech therapy for an hour a week. If our therapist's schedule permits, she will actually see Ava at school in order to facilitate her communication and speech there. I will obviously continue to work with Ava here at home.
The big story of the IFSP meeting, however, is that we veered off into an entirely new direction. My service coordinator sent me a questionaire ahead of time and one of the questions was about my areas of concern for Ava. Almost on a whim, I wrote in a couple of non-speech items that have been bugging me for a while now. Honestly, I was expecting to bring them up and be reassured that they were within the normal range for kids her age. That's not exactly the way it went.
I've noticed that Ava is really sensitive to noise. The sound of the washer or dryer running will bother her enough while she is watching television in another room for her to leave the tv, run around the corner and down a hallway and shut the door to the laundry room. The flushing of the toilet in a restroom bothers her. Her hands clap over her ears and she recites, "loud, loud, loud" until the sound stops. Her father's electric razer will get the same reaction. We took the kids to their first movie (Winnie the Pooh) and I spent the entire time with my hands over her ears trying to reassure her that it really was all right.
Another issue is her picky eating. It is getting worse and worse and seems to be related to texture. She doesn't like to touch things that are messy and if her hands do get messy she immediately wants a napkin. She doesn't like to be touched or restrained. When other children approach her she gets really upset and reacts almost as if she's been hit. Washing her hair and face is pretty traumatic because she reacts so poorly to the washcloth and tilting her head back.
Well, to make a long story a bit shorter, we've added an hour of occupational therapy to her services. They feel like some OT might make a big difference with her feeding and bathing issues and other sensitivities.
I've never been closely involved with occupational therapy services before and so this will be a whole new area for me. I am hopeful that they can help Ava to be less sensitive and to experience the world a little more comfortably and fully. That would be such a gift to her.
All in all, a useful IFSP meeting. Next up: transition meeting and scheduling our first occupational therapy session.
Tuesday, July 26, 2011
Thoughts about IFSP Meetings
In order to qualify for services, children need to meet specific criteria. That's necessary. I get that. No one wants to provide therapy to children who don't really need it, and we can't afford to treat everyone who is even a little delayed, so you set a criterion and treat the children who need it the most. It is practical and theoretically fair if the same criteria are applied to everyone.
However, when the system is set up in this way it causes stress and tension. Parents want therapy for their children and are nervous about qualifying. When the time comes for a new meeting, the parents are hesitant to celebrate their child's successes because they are afraid they may no longer qualify for services that are still very much needed.
So, instead, you focus on all of the areas in which your child still struggles. It makes the meetings more than a little depressing. And although early intervention can be a wonderful experience and resource for families (it is for us), the time frame for early intervention ends so early. Ava will have been in the early intervention program for only a little over a year and then she will age out.
Then you have to start the whole process over again with your local school district and their criteria are even harsher. At yesterday's IFSP meeting, our service coordinator mentioned that next month we will need to hold a transition meeting. The purpose of that meeting, as I understand it, is to introduce us to the school district people that will be handling evaluating Ava to see if she qualifies for their services when she turns three.
And so time, and the special education processess, marches on.
(more on how our IFSP meeting went tomorrow)
However, when the system is set up in this way it causes stress and tension. Parents want therapy for their children and are nervous about qualifying. When the time comes for a new meeting, the parents are hesitant to celebrate their child's successes because they are afraid they may no longer qualify for services that are still very much needed.
So, instead, you focus on all of the areas in which your child still struggles. It makes the meetings more than a little depressing. And although early intervention can be a wonderful experience and resource for families (it is for us), the time frame for early intervention ends so early. Ava will have been in the early intervention program for only a little over a year and then she will age out.
Then you have to start the whole process over again with your local school district and their criteria are even harsher. At yesterday's IFSP meeting, our service coordinator mentioned that next month we will need to hold a transition meeting. The purpose of that meeting, as I understand it, is to introduce us to the school district people that will be handling evaluating Ava to see if she qualifies for their services when she turns three.
And so time, and the special education processess, marches on.
(more on how our IFSP meeting went tomorrow)
Thursday, July 14, 2011
Baby Kitty
This is Baby Kitty.
She is precious to Ava. Baby Kitty sleeps with Ava during naps and nighttime. Baby Kitty often accompanies Ava downstairs during the day or on a car ride. She was named Baby Kitty because she was smaller than Mama Kitty (we had Mama Kitty first).
When Ava first became attached to Mama Kitty, we got a couple of backup Mama Kitties just in case... We have needed one or two of those upon occasion (one Mama Kitty spent an accidental night at the mall, another needed a run through the laundry). Baby Kitty was a gift. A very loved gift. However, Baby Kitty has no tag or identifying markings. There was probably some sort of tag that I cut off when she first arrived, but I have no idea what it was. Therefore I cannot order backups for Baby Kitty. That makes me nervous.
Yesterday, at nap time, Baby Kitty could not be located. I managed to distract Ava with a soft snuggly blanket she hadn't seen in a long time, but it was a glimpse of how sad she would be if Baby Kitty disappeared. I found Baby Kitty in a corner after Ava went to sleep, but what if I can't next time? I know she'll survive, but I'm kind of attached to Baby Kitty too.
She is precious to Ava. Baby Kitty sleeps with Ava during naps and nighttime. Baby Kitty often accompanies Ava downstairs during the day or on a car ride. She was named Baby Kitty because she was smaller than Mama Kitty (we had Mama Kitty first).
When Ava first became attached to Mama Kitty, we got a couple of backup Mama Kitties just in case... We have needed one or two of those upon occasion (one Mama Kitty spent an accidental night at the mall, another needed a run through the laundry). Baby Kitty was a gift. A very loved gift. However, Baby Kitty has no tag or identifying markings. There was probably some sort of tag that I cut off when she first arrived, but I have no idea what it was. Therefore I cannot order backups for Baby Kitty. That makes me nervous.
Yesterday, at nap time, Baby Kitty could not be located. I managed to distract Ava with a soft snuggly blanket she hadn't seen in a long time, but it was a glimpse of how sad she would be if Baby Kitty disappeared. I found Baby Kitty in a corner after Ava went to sleep, but what if I can't next time? I know she'll survive, but I'm kind of attached to Baby Kitty too.
Tuesday, July 12, 2011
Difficult in pairs
Ava is experiencing a return of the Mama Phase. See here and here for the original version of the Mama Phase. I'm sure it didn't appear from nowhere, but somehow I didn't notice until it hit critical. Ava now wants me to do everything for her and refuses to accept attention and assistance from anyone else. She doesn't want her Daddy to kiss her hello or goodbye. She doesn't want her Daddy to get her from her room in the morning or after nap. She doesn't want her Daddy to help her go to the bathroom, dress her for bed, read her stories, get her milk, wipe her face, or anything else. "No! Mommy do it!" is the phrase we hear all the time around here.
This time, we know better than to give in. We learned last time that giving in only makes it worse. We also know that the way to fix it is to give her reduced Mama time and extra Daddy time (making it fun) until the phase passes. It is even more "fun" this time around though because she has so much more speech. As she was pitching a huge fit the other day because Daddy happened to be the one carrying her out of Chick-Fil-A instead of Mommy, she tried a variety of tactics to get him to switch. "I need Mommy" didn't work. Then she tried, "I need to pee, I need to go poopy, I need to get down." Sigh. These situations are even more fun in a crowded public setting. So that's Ava right now.
And then there's Michael. It just wouldn't be as much fun if my children didn't experience their difficult phases at the same time. I remember saying the following statement. I remember saying it to multiple people, on multiple occasions, over several months if not years. I really should have known better. I said, "Unlike Ava, Michael is fundamentally a rule follower. He usually pretty much listens to what I say and doesn't question it much."
Oh boy. Little did I know that he was just saving up all his defiance for 3 1/2 instead of for the "terrible twos". You name it, he's trying it right now. Where did my sweet, compliant little boy go? I say, "Don't do X." He immediately responds by doing the forbidden action. Then, in the action specifically designed to increase my temper into the red zone he giggles and runs around in glee at my obvious anger. He's hitting, throwing, and making messes several times a day. In his defense, they're all pretty low level versions of those things and he's obviously just testing, but it is driving me crazy. I need to take a step back and come up with some kind of plan, because I really don't like the amount of yelling I've been doing recently and it isn't working anyway. Ideas?
Oh, and as a bonus, when not dealing with all of the above, the Why phase rages on here as well and it is contagious. Now they're both at it. They take turns. This one doesn't bother me as much though. It gets to the point where it is just funny. I enjoy trying to think of the answer to the next why that I know is coming as soon as I finish the last response.
I hope all of your parenting adventures are going more smoothly than mine.
This time, we know better than to give in. We learned last time that giving in only makes it worse. We also know that the way to fix it is to give her reduced Mama time and extra Daddy time (making it fun) until the phase passes. It is even more "fun" this time around though because she has so much more speech. As she was pitching a huge fit the other day because Daddy happened to be the one carrying her out of Chick-Fil-A instead of Mommy, she tried a variety of tactics to get him to switch. "I need Mommy" didn't work. Then she tried, "I need to pee, I need to go poopy, I need to get down." Sigh. These situations are even more fun in a crowded public setting. So that's Ava right now.
And then there's Michael. It just wouldn't be as much fun if my children didn't experience their difficult phases at the same time. I remember saying the following statement. I remember saying it to multiple people, on multiple occasions, over several months if not years. I really should have known better. I said, "Unlike Ava, Michael is fundamentally a rule follower. He usually pretty much listens to what I say and doesn't question it much."
Oh boy. Little did I know that he was just saving up all his defiance for 3 1/2 instead of for the "terrible twos". You name it, he's trying it right now. Where did my sweet, compliant little boy go? I say, "Don't do X." He immediately responds by doing the forbidden action. Then, in the action specifically designed to increase my temper into the red zone he giggles and runs around in glee at my obvious anger. He's hitting, throwing, and making messes several times a day. In his defense, they're all pretty low level versions of those things and he's obviously just testing, but it is driving me crazy. I need to take a step back and come up with some kind of plan, because I really don't like the amount of yelling I've been doing recently and it isn't working anyway. Ideas?
Oh, and as a bonus, when not dealing with all of the above, the Why phase rages on here as well and it is contagious. Now they're both at it. They take turns. This one doesn't bother me as much though. It gets to the point where it is just funny. I enjoy trying to think of the answer to the next why that I know is coming as soon as I finish the last response.
I hope all of your parenting adventures are going more smoothly than mine.
Monday, July 11, 2011
Chipmunk
My parents took Ava Friday night. (Thank you Mom and Dad!) When they brought her home Saturday evening she was clutching a package of crackers in her hand like it was treasure. I'm still not sure what the story behind that was. Since we were about to eat dinner, I quickly confiscated the crackers but lessened the blow by letting her have two. She wandered around carrying them without eating them for a while but was eventually down to half a cracker.
In the meantime, Michael noticed the sudden appearance of crackers in the house and came to beg one for himself. I told him "just one" and was handing it to him when Ava rushed in from the other room apparently having overheard us. She popped her last half cracker in her mouth and held her hand out for more. I told her, "Absolutely not! You've already had your two." She thought about that for a moment, accepted that it was fair, and pulled that last half cracker right back out of her mouth and walked away holding it.
My little chipmunk.
In the meantime, Michael noticed the sudden appearance of crackers in the house and came to beg one for himself. I told him "just one" and was handing it to him when Ava rushed in from the other room apparently having overheard us. She popped her last half cracker in her mouth and held her hand out for more. I told her, "Absolutely not! You've already had your two." She thought about that for a moment, accepted that it was fair, and pulled that last half cracker right back out of her mouth and walked away holding it.
My little chipmunk.
Monday, July 4, 2011
Why? Why? Why?
Why has arrived in full force around here. In fact, if it weren't so new, and if I weren't so grateful that Ava can talk at all, it might even be a little annoying.
Now I don't mind answering genuine why questions. Ask me why the sky is blue. Fine. Ask me why we need to go to sleep. Fine.
But check these out:
Ava: I need to go pee.
Me: Ok. Let's go potty.
Ava: Why?
(Ava is obviously bored with the television.)
Me: Are you ready to turn the tv off?
Ava: Yep.
Me: Ok. Let's go turn the tv off.
Ava: Why?
(after finishing a meal)
Ava: Come play with me.
Me: Just as soon as I finish cleaning up.
Ava: Why?
Me: Because Mommy has to make sure that the table is all clean for next time.
Ava: Why?
Me: Because we'll need the table to be clean so we can put new food on it at dinner.
Ava: Why?
Me: I'll be right back.
Ava: Where you going Mommy?
Me: To the bathroom.
Ava: Why?
Me: To go potty.
Ava: Why?
I could go on, but I think you get the idea.
Happy 4th of July everyone.
Now I don't mind answering genuine why questions. Ask me why the sky is blue. Fine. Ask me why we need to go to sleep. Fine.
But check these out:
Ava: I need to go pee.
Me: Ok. Let's go potty.
Ava: Why?
(Ava is obviously bored with the television.)
Me: Are you ready to turn the tv off?
Ava: Yep.
Me: Ok. Let's go turn the tv off.
Ava: Why?
(after finishing a meal)
Ava: Come play with me.
Me: Just as soon as I finish cleaning up.
Ava: Why?
Me: Because Mommy has to make sure that the table is all clean for next time.
Ava: Why?
Me: Because we'll need the table to be clean so we can put new food on it at dinner.
Ava: Why?
Me: I'll be right back.
Ava: Where you going Mommy?
Me: To the bathroom.
Ava: Why?
Me: To go potty.
Ava: Why?
I could go on, but I think you get the idea.
Happy 4th of July everyone.
Thursday, June 30, 2011
Another reality check.
Another piece of information I picked up this weekend from Ms. J. was the results of the test of phonological processing she did with Ava. Ms. A and I had already given Ava a basic articulation test several weeks ago and she did pretty poorly. I also wanted to give Ava a phonological processing test because that gives you a completely different set of information. Ms. J offered to administer the test and she had the test scored by the weekend.
I don't have all the specifics, because she had forgotten to make a copy for me, but I did get the bottom line. The test scores fall into one of five levels. The best is in the normal range, and the worst is a profound phonological processing disorder. Ava scored one tier higher than profound. Her score fell into the very severe phonological processing disorder range.
Sigh. Again, this isn't a huge surprise. Six months ago she had so little speech we couldn't even have administered the test. But it definitely puts things into perspective to realize that compared to other girls her age, the phonological processing patterns in her speech put her in the very severe range.
I'm looking forward to seeing the detailed results because that is where I'll get more clues about what exactly is going on.
I don't have all the specifics, because she had forgotten to make a copy for me, but I did get the bottom line. The test scores fall into one of five levels. The best is in the normal range, and the worst is a profound phonological processing disorder. Ava scored one tier higher than profound. Her score fell into the very severe phonological processing disorder range.
Sigh. Again, this isn't a huge surprise. Six months ago she had so little speech we couldn't even have administered the test. But it definitely puts things into perspective to realize that compared to other girls her age, the phonological processing patterns in her speech put her in the very severe range.
I'm looking forward to seeing the detailed results because that is where I'll get more clues about what exactly is going on.
Wednesday, June 29, 2011
K is here!
This past weekend was one of Ava's twice a month therapy sessions with Ms. J. When I walked in the therapy room at the end of the session, Ms. J very matter of factly told me that we'd be adding final /k/ to her list of things to practice because she can do it now. Then she said to Ava, "say, /k/." And she did. I was completely surprised and so pleased.
It is hard for her. She still substitutes a /t/ for the /k/ the vast majority of the time. I always feel mean when I tell her, "No baby, that's /t/. We need a /k/." and I have to ask her to say the word again. In order for her to even have a chance of getting it, I need a slight pause between the first half of the word and the final /k/ sound. So, I say, "boo - k". And when I make that final /k/ sound it has to be really guttural. If I just make a regular /k/ sound she'll repeat with a /t/ every time.
But /k/ is here and we can finally start to work on some back sounds. Progress!
It is hard for her. She still substitutes a /t/ for the /k/ the vast majority of the time. I always feel mean when I tell her, "No baby, that's /t/. We need a /k/." and I have to ask her to say the word again. In order for her to even have a chance of getting it, I need a slight pause between the first half of the word and the final /k/ sound. So, I say, "boo - k". And when I make that final /k/ sound it has to be really guttural. If I just make a regular /k/ sound she'll repeat with a /t/ every time.
But /k/ is here and we can finally start to work on some back sounds. Progress!
Tuesday, June 21, 2011
Windows
Speech is a window into someone's mind. For Michael that window is wide open. His mind forms a thought, his mouth speaks it, and I comprehend it. The process is effortless and easy. In fact, that boy's mouth has no filter. Every thought just comes out of his mouth in a continuous stream. I will admit that occasionally I wish for a pause button.
And then there is my daughter. It is painfully obvious that she has just as much to say. She'll come running in from the other room just bursting with something she wants to share. She'll tell me a one or two or even three sentence story and then pause excitedly for my reaction. In a typical conversation I would effortlessly understand her and immediately respond. Instead, I pause while my mind tries frantically to figure out what she said. Often I fail. So far, she doesn't seem too upset. She'll often just run off back to whatever she was doing. But I missed it. I missed that window into her mind and that opportunity to know her better and share her thoughts. And I'll never get that particular opportunity back. I just have to wait for the next one and try again.
And then there is my daughter. It is painfully obvious that she has just as much to say. She'll come running in from the other room just bursting with something she wants to share. She'll tell me a one or two or even three sentence story and then pause excitedly for my reaction. In a typical conversation I would effortlessly understand her and immediately respond. Instead, I pause while my mind tries frantically to figure out what she said. Often I fail. So far, she doesn't seem too upset. She'll often just run off back to whatever she was doing. But I missed it. I missed that window into her mind and that opportunity to know her better and share her thoughts. And I'll never get that particular opportunity back. I just have to wait for the next one and try again.
Saturday, June 18, 2011
Simultaneous Relief and Sadness
Oh my goodness is she talking. The other day Ava commented that, "Daddy put peanut butter on Ava's really really big pancake." That's a 10 word sentence coming from my little girl who's only 27 months old. It is such a relief. 6 months ago she had only three words in her vocabulary and couldn't imitate. Now she's talking in multi-word sentences. Obviously her language is fine.
However...
More and more, I can't understand her at all. I'm pretty good if she's talking about something immediate and in front of us (like Daddy and the pancakes). If I have some context and we can see and point at it I can understand most of what she has to say. But if she's talking about anything else I'm clueless. You often can't understand a word of what she's saying. If she starts rattling off her opinion of a tv show I haven't watched or telling me about something she did at her grandparents' house I often have no idea.
As you would expect for Childhood Apraxia of Speech, the longer the utterance, the less you can understand. It's killing me. She has so much to say. Her little mind wants to tell stories. She wants to engage in back and forth conversation. Instead she says something which I hear as, "Garble, garble, garble, garble, garble" and I just look at her and reply, "Uh huh sweetie." And then I try to change the subject. Sometimes I say, "I'm sorry, sweetheart, Mama didn't understand you. Can you tell me again?" But I only do that when I think I have some chance of getting it. Otherwise, she just gets frustrated at trying to tell me over and over unsuccessfully.
I know we're working as fast as we can. I know she's made phenomenal progress in a relatively short time. I know she can communicate so much more than before. But honestly, I feel that it is terribly unfair that she's worked so hard, she's finally got so much to say and is actually trying to say it, and she still can't communicate successfully much of the time with her loved ones. That sucks.
However...
More and more, I can't understand her at all. I'm pretty good if she's talking about something immediate and in front of us (like Daddy and the pancakes). If I have some context and we can see and point at it I can understand most of what she has to say. But if she's talking about anything else I'm clueless. You often can't understand a word of what she's saying. If she starts rattling off her opinion of a tv show I haven't watched or telling me about something she did at her grandparents' house I often have no idea.
As you would expect for Childhood Apraxia of Speech, the longer the utterance, the less you can understand. It's killing me. She has so much to say. Her little mind wants to tell stories. She wants to engage in back and forth conversation. Instead she says something which I hear as, "Garble, garble, garble, garble, garble" and I just look at her and reply, "Uh huh sweetie." And then I try to change the subject. Sometimes I say, "I'm sorry, sweetheart, Mama didn't understand you. Can you tell me again?" But I only do that when I think I have some chance of getting it. Otherwise, she just gets frustrated at trying to tell me over and over unsuccessfully.
I know we're working as fast as we can. I know she's made phenomenal progress in a relatively short time. I know she can communicate so much more than before. But honestly, I feel that it is terribly unfair that she's worked so hard, she's finally got so much to say and is actually trying to say it, and she still can't communicate successfully much of the time with her loved ones. That sucks.
Tuesday, June 7, 2011
Home Therapy Plan - Rough Draft
Here's my first attempt (this time around) at structuring therapy sessions here at home.
Now, my original idea was that Ava and I would sit down together and my charisma and enthusiasm would result in her wanting to practice speech sounds with me in exchange for the pleasure of putting stickers on the chart after each set of cards.
Hahahahahaha.
After that complete failure, I offered her two froot loops of her choice after doing each stack of cards. ("Two pink mommy." Hmm... what will we do when we run out of red froot loops?) That worked much better. We ended up with only one sticker on the chart. So I stuck the chart up on the wall and now we'll put a sticker up on the chart after each session.
My goal is to try to get in four or five 10-20 minute sessions per week. We'll see how it goes.
- I made Ava a speech bag to store her speech materials in. Since we're really fancy around here, her bag is a ziploc decorated with stickers.
- I printed some very nice articulation cards I found at mommyspeechtherapy.com. I cut those out, paperclipped the different targets, and stuck them in the bag. Note: I printed these on cardstock at high quality to make the cards more durable and prettier.
- I found a site with some free printable reward charts and printed a butterfly one for Ava.
Now, my original idea was that Ava and I would sit down together and my charisma and enthusiasm would result in her wanting to practice speech sounds with me in exchange for the pleasure of putting stickers on the chart after each set of cards.
Hahahahahaha.
After that complete failure, I offered her two froot loops of her choice after doing each stack of cards. ("Two pink mommy." Hmm... what will we do when we run out of red froot loops?) That worked much better. We ended up with only one sticker on the chart. So I stuck the chart up on the wall and now we'll put a sticker up on the chart after each session.
My goal is to try to get in four or five 10-20 minute sessions per week. We'll see how it goes.
Monday, June 6, 2011
Therapy Progress - Small Details Add Up to Big Picture Progress (At least, that's the plan.)
I realized that I haven't done a real update on Ava's therapy progress and speech in quite a while.
Here are her previous updates, in order, for anyone who is just tuning in and is interested in the background:
It has become much more difficult to track Ava's progress. The difference between "My baby isn't talking!" and "My baby is starting to use words!" is pretty clear and exciting. The difference between, "She can't even imitate." and "She can imitate." is also pretty clear cut. The increase from single words to two-word phrases was obvious as well as was the increase to 3-4 word sentences. Getting a new sound is another simple, observable change. Well, we went through all of those easy to track changes and they were wonderful and I was feeling great. Then there was the reality check of a standardized articulation test. Overall, things are getting harder to track now, but I'll try.
So, I suppose the good part of the "big picture" is that Ava's gained enough confidence to try more. In terms of the length of her sentences, she's pretty much age appropriate. Also, the more she talks the more opportunities you have to practice, refine, and correct. The challenging part of the "big picture" is that the more she tries to say the harder she is to understand.
The other thing we're working on is trying to get some new consonants. Specifically we are trying to get the /k/ sound. Ms. J says that she has gotten Ava to make a /k/ sound in isolation during her therapy sessions, but I just cannot get her to do it here at home. I even tried bribing her with M&M's, but still no luck.
Why these specific targets? Well, adding final consonants is huge. Leaving those sounds out makes her much harder to understand and as she starts to add those sounds back in, that should improve her intelligibility. Improving intelligibility (how well she is understood) is the reason for trying to get her to make the /k/ sound. /k/ will be the gateway sound for /g/ because they are a voicing pair. There are a lot of words out there that use the /k/ and /g/ sounds and right now she either leaves the sound out or substitutes a /t/ or /d/. If we can introduce the /k/ and eventually the /g/ she should get a big boost in her ability to make herself understood.
And so we march forward. We choose targets that we hope will get us that much closer to our overall goal of helping Ava express herself in a way that can be understood.
My goal for the next few weeks is to reintroduce structured home practice. She needs more repetitions. That is the core of apraxia therapy. Even if I have to resort to bribing the girl with candy, we will somehow get it done.
Here are her previous updates, in order, for anyone who is just tuning in and is interested in the background:
- Speech Therapy Progress: January 27, 2011
- Therapy Progress - Speed of Light: February 17, 2011
- Two-word combinations begin: March 5, 2011
- Therapy Progress - Practice and Generalization: March 21, 2011
- Therapy Progress - Steady Progress and Subtle Change: April 12, 2011
It has become much more difficult to track Ava's progress. The difference between "My baby isn't talking!" and "My baby is starting to use words!" is pretty clear and exciting. The difference between, "She can't even imitate." and "She can imitate." is also pretty clear cut. The increase from single words to two-word phrases was obvious as well as was the increase to 3-4 word sentences. Getting a new sound is another simple, observable change. Well, we went through all of those easy to track changes and they were wonderful and I was feeling great. Then there was the reality check of a standardized articulation test. Overall, things are getting harder to track now, but I'll try.
Big Picture
Ava is certainly talking a lot. She pretty much never uses a single word utterance any more. She's rarely uses a two-word phrase. Oddly enough, now that she is more ambitious in her speech she is actually harder to understand. When her sentences are longer and particularly when I have no context, I have a lot of trouble understanding her. It is frustrating for me and for her. I can handle my frustration, but watching her get upset when I don't understand just kills me.So, I suppose the good part of the "big picture" is that Ava's gained enough confidence to try more. In terms of the length of her sentences, she's pretty much age appropriate. Also, the more she talks the more opportunities you have to practice, refine, and correct. The challenging part of the "big picture" is that the more she tries to say the harder she is to understand.
Details
Specifically, we are working on two main areas. We are trying to add final consonants (only the ones she can actually make) to her words. She does best with /t/ and /p/. Those sounds are easier for her because they are voiceless. She can imitate a final /t/ (like in hat) and a final /p/ (like in up) pretty much 100% of the time. She's also using them on her own when talking roughly 30% of the time. We're trying to work on final /d/, /b/, /s/, /n/, and /m/ as well, but those are all harder for her. She can imitate some better than others, and pretty much never uses them on her own.The other thing we're working on is trying to get some new consonants. Specifically we are trying to get the /k/ sound. Ms. J says that she has gotten Ava to make a /k/ sound in isolation during her therapy sessions, but I just cannot get her to do it here at home. I even tried bribing her with M&M's, but still no luck.
Why these specific targets? Well, adding final consonants is huge. Leaving those sounds out makes her much harder to understand and as she starts to add those sounds back in, that should improve her intelligibility. Improving intelligibility (how well she is understood) is the reason for trying to get her to make the /k/ sound. /k/ will be the gateway sound for /g/ because they are a voicing pair. There are a lot of words out there that use the /k/ and /g/ sounds and right now she either leaves the sound out or substitutes a /t/ or /d/. If we can introduce the /k/ and eventually the /g/ she should get a big boost in her ability to make herself understood.
And so we march forward. We choose targets that we hope will get us that much closer to our overall goal of helping Ava express herself in a way that can be understood.
My goal for the next few weeks is to reintroduce structured home practice. She needs more repetitions. That is the core of apraxia therapy. Even if I have to resort to bribing the girl with candy, we will somehow get it done.
Wednesday, June 1, 2011
Complacency and Marathons
When I finally accepted that I needed to get help for Ava, she tested so low, and the label Childhood Apraxia of Speech was spoken out loud it had a huge, profound impact on me. I was very depressed. I had difficulty thinking about anything else. My mind constantly circled around questions that simply cannot be answered right now about how much progress Ava will make and what will the impact of all of this have on her childhood and future.
After a few weeks I passed through the "this has rocked my world and not in a good way" stage and into a more productive stage. There was a flurry of research, self-education, setting up appointments, starting therapy, getting hearing checked, surgery for PE tubes, learning and using sign language, making and setting up communication boards, IFSP meetings, considering and trying nutritional supplements, and blogging about all of the above. And, it was all worth it. We saw changes in Ava's ability to communicate - dramatic and celebrated changes.
I began to breathe a sigh of relief. Yes, the disorder is still there, but it is responding to treatment. I relaxed. I gave myself permission to stop pushing Ava so much at home. To be honest, she didn't respond well when I tried to sit her down at home and do structured therapy with her myself and so I stopped even trying. I switched to a more indirect method of working with her through books and songs and correcting the many utterances we get each day as a natural part of our daily life. So much positive change had taken place so quickly that I began to think that we were "okay." Perhaps we were lucky enough that Ava's apraxia was so mild that we could get her "caught up" in a 1-2 year time frame rather than a much more extended time frame.
Then, our first standardized articulation test was a bit of a reality check and I realized how she is still very far behind her same-age peers. I had become a bit complacent. The progress Ava had already made was such a relief that I forgot that there is still a long way to go. I haven't quite decided what to do about that yet, but over the next couple of weeks I'm going to be thinking about ways I can focus on Ava's speech more here at home again. I'd like to build in some speech time every day in a way that hopefully she and I can both enjoy. I need to remember that this journey is something of a marathon and that I cannot just simply hope that we've come far enough that the rest will magically take care of itself.
After a few weeks I passed through the "this has rocked my world and not in a good way" stage and into a more productive stage. There was a flurry of research, self-education, setting up appointments, starting therapy, getting hearing checked, surgery for PE tubes, learning and using sign language, making and setting up communication boards, IFSP meetings, considering and trying nutritional supplements, and blogging about all of the above. And, it was all worth it. We saw changes in Ava's ability to communicate - dramatic and celebrated changes.
I began to breathe a sigh of relief. Yes, the disorder is still there, but it is responding to treatment. I relaxed. I gave myself permission to stop pushing Ava so much at home. To be honest, she didn't respond well when I tried to sit her down at home and do structured therapy with her myself and so I stopped even trying. I switched to a more indirect method of working with her through books and songs and correcting the many utterances we get each day as a natural part of our daily life. So much positive change had taken place so quickly that I began to think that we were "okay." Perhaps we were lucky enough that Ava's apraxia was so mild that we could get her "caught up" in a 1-2 year time frame rather than a much more extended time frame.
Then, our first standardized articulation test was a bit of a reality check and I realized how she is still very far behind her same-age peers. I had become a bit complacent. The progress Ava had already made was such a relief that I forgot that there is still a long way to go. I haven't quite decided what to do about that yet, but over the next couple of weeks I'm going to be thinking about ways I can focus on Ava's speech more here at home again. I'd like to build in some speech time every day in a way that hopefully she and I can both enjoy. I need to remember that this journey is something of a marathon and that I cannot just simply hope that we've come far enough that the rest will magically take care of itself.
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