Today has been a big day! McKenna had her big eval by the school district to determine qualification for their early intervention preschool. The big news is- she did well! Very very well. So well that it's not looking like she'll qualify. At least that's what the 3 women who were involved in the process hinted at.
I am having lots of mixed feelings and emotions. So hopefully writing this will help me sort them out.
First of all we will not know for sure for about a month. We have a scheduled meeting at the end of April to discuss today's eval and if she qualifies, make an IEP. If she does not qualify then I guess we'll be discussing that.
They administered the PLS4 (Preschool Language Scale-4). McKenna definitely performed for them today. She sat right down at the little desk and was very focused and deliberate. After about 20 minutes they had everything they expected to have and then kept going. They ended up going to a 3 1/2 year level- so 1 year ahead- and that's where they stopped after joking she was going to test into kindergarten. They raved about her focus and concentration, how she held her pencil correctly and how controlled she was while drawing, how cute and sweet she was, how much she clearly comprehended and understood. They were impressed with her vocabulary. They did make a comment on her articulation being inconsistent. And there was a few times they did not understand her.
I made sure they knew how hard we had worked to get to this place. I told them how it's always been very clear that she is not delayed in her receptive language, but that it is the huge gap between her receptive and expressive that we are concerned about. They were extremely complementary of me. With statements like, "Wow- it is clear that you have done an amazing job with her!" and "This is what is possible with hard work and early intervention!"
I am thrilled! It was so amazing to have an eval with McKenna where the report was not negative. It was uplifting and rewarding for all of our work over the past year be recognized and praised. I had tears of joy. I also feel a lot of pride in McKenna. She works hard and is very smart!
So why mixed emotions? Well I have some concerns . . .
First Steps will drop us at the end of the summer, they do not go past age 3 years. So then we will lose Ms. T. who I respect and give her the credit for McKenna's amazing improvement over the year. Children's Mercy will only work with a child for 6 months. That's their policy. They have so many children on waiting lists and usually services are being duplicated by First Steps or a School District. You can see where I'm going with this... I'm afraid that come August McKenna will suddenly be without ANYTHING. No therapy at all.
I am not okay with that. Ms. T. is not comfortable with that either.
Some of my thoughts on the test today. It tested McKenna's ability to take that test. Yes- she did well. This child has been drilled in similar ways since last summer at least once a week and since Jan twice a week and since Feb. four times a week. 4 times a week she has been drilled in similar ways. She knows exactly what is expected of her and is eager to please, participate and do well.
She is a perfectionist. She has a set vocabulary that she has drilled over and over and those words she can say without many mistakes. She speaks slowly, deliberately and carefully. She smartly and strategically uses synonyms that sound cute and age appropriate for harder words that she would struggle to say. She did that today with great skill. I noticed- they didn't.
The women today were so impressed with her receptive and even her communication skills that I don't think they were focused on the huge gap between how smart and comprehending she is and her actual "verbal" communication skill. I'm telling you McKenna could possibly have fooled them into kindergarten on that test.
What that test did not do was put her in a real world context, every day life with no prompting, no context. What that test did not reveal is that when I have no context 90% of what McKenna says I don't understand. What that test did not show is her confusion and frustration when she tries to tell me what she's upset about or what she's excited about. That test did not show how she is completely silent when her cousin Vallery comes over to play. Cole and Vallery talk and talk and talk and she says next to nothing as she plays with them. It did not show her inconsistency, how she may be able to say, "I want cheese" and then struggle to say, "two books". Or how she may say something spontaneously very easily and then struggle when she tries again.
What was revealed is that results are relative. Yes McKenna did well, she did well when compared to a lot of the children who are delayed more globally. She even did ok verbally when compared to normal children her age. BUT you have to be 50% delayed when compared to the norm to qualify- according to the states guidelines. Now I think McKenna could possibly test as high as kindergarten "receptively" but "expressively- verbally" she's barely able to keep up with kids her age. So I think there is at least a 1 year gap if not more between her expressive and receptive. I don't know if they caught that.
Of course I will discuss all of this at the meeting in a month- especially if she does not qualify.
However if she does- I'm also concerned that there be someone there who is really experienced with Apraxia. Because otherwise I'm afraid she'd be the star pupil and not pushed beyond what is expected of someone her age when she should be ahead- verbally.
Over all though- what I have realized today is that I can stop worrying about whether or not McKenna will ultimately be successful in overcoming this. If you take what she did today and blow it up on a larger scale it showed me that she will be successful. She is already working around her problem. I know there will still be hard days and I know there is still a lot of hard work ahead of her, but I am confident she will overcome!
Also if we do not qualify for help from the school district- I *WILL* find a way to keep her in speech therapy at least twice a week. I WILL. Where there is a will there is a way! I have no doubt in my mind that it is the shear amount of help I have gotten her this past year that has made such a difference for her. Everything you read about Apraxia states that the more therapy the better. That has totally been true for McKenna. The more times a week she works the more headway she makes.
Thanks for listening/reading! (-:
Love,
Amber
Tuesday, March 23, 2010
Saturday, March 6, 2010
McKenna Singing
I took some video on my cell phone of McKenna singing last night. She was singing "Old McDonald Had A Farm". She is singing really fast. That is her approximation of all the different words. She says mostly the same words over and over, but she says them really fast. I think it makes her feel like she's saying all those words.
In this first video she says something at the very beginning that is supposed to be "eieio" . . .It's "ye ye doh..." Then she goes right into "moo moo here, moo moo here". Then she starts listing other animals. She says them each twice. I think the 2nd one is pig? The 3rd is "neigh neigh here" which is a horse. Daddy laughs with delight (He hopes McKenna does not take it the wrong way). She gets stuck on "neigh...". and then explains she's singing horsey...
This video starts with "moo moo here moo moo here" . . . then "baa baa here". In both videos she only repeats the "moo"animal sound twice so the others are "baa here" then "neigh here.." then "pig here.." then "oink here.." and that's where she gets stuck in this one- on oink...
And in both examples there are inconsistencies, various vowel sounds throw in at different places and vowel inconsistencies within the same word. For instance in the 2nd video she says, "a peg here" and then very nicely pronounces it "pig" when she repeats it.
The fact that we can even figure out what she is saying/singing is huge, a big improvement. We are very proud of her.
It is sobering for us to watch these though because somehow it just becomes more clear... her struggle . . . all of the work left for her to do.
What was also hard was McKenna wanted to see the video of herself. I watched her closely as she watched herself sing. She did not smile watching herself. Her eyebrows came together, her shoulders slumped just a little and she looked really confused. Then she just turned away and distracted herself with a toy.
Of course we praise her. We tell her she is singing so well. That she is awesome. But- she's too smart and self aware to totally believe us. She "knows" she's not where she should be. That's hard.
I think she's unbelievably cute!! I know someday she'll look back at these videos and smile. Someday . . .
Amber
In this first video she says something at the very beginning that is supposed to be "eieio" . . .It's "ye ye doh..." Then she goes right into "moo moo here, moo moo here". Then she starts listing other animals. She says them each twice. I think the 2nd one is pig? The 3rd is "neigh neigh here" which is a horse. Daddy laughs with delight (He hopes McKenna does not take it the wrong way). She gets stuck on "neigh...". and then explains she's singing horsey...
This video starts with "moo moo here moo moo here" . . . then "baa baa here". In both videos she only repeats the "moo"animal sound twice so the others are "baa here" then "neigh here.." then "pig here.." then "oink here.." and that's where she gets stuck in this one- on oink...
And in both examples there are inconsistencies, various vowel sounds throw in at different places and vowel inconsistencies within the same word. For instance in the 2nd video she says, "a peg here" and then very nicely pronounces it "pig" when she repeats it.
The fact that we can even figure out what she is saying/singing is huge, a big improvement. We are very proud of her.
It is sobering for us to watch these though because somehow it just becomes more clear... her struggle . . . all of the work left for her to do.
What was also hard was McKenna wanted to see the video of herself. I watched her closely as she watched herself sing. She did not smile watching herself. Her eyebrows came together, her shoulders slumped just a little and she looked really confused. Then she just turned away and distracted herself with a toy.
Of course we praise her. We tell her she is singing so well. That she is awesome. But- she's too smart and self aware to totally believe us. She "knows" she's not where she should be. That's hard.
I think she's unbelievably cute!! I know someday she'll look back at these videos and smile. Someday . . .
Amber
Tuesday, March 2, 2010
Busy Girl
McKenna has a new schedule that we will try to maintain through the summer until First Steps turns McKenna over to the school district in August.
Monday 8:30 to 9:15-(in home) Occupational Therapy and Sensory Integration
Tuesday 1:45 to 2:45-(in home) Speech Therapy
Wednesday 8:30 to 9:30 (in home) Speech Therapy
Friday 8:30 to 9:15 (at Children's Mercy) Speech Therapy
These pictures are all from Christmas!
McKenna's best friend is her brother Cole.
McKenna loves her Ma! (my mom)
McKenna loves her Pa! (my dad)
I've had to write her schedule on our calendar that hangs on the wall so I can keep it straight. This will be our 1st week to do all of it. We are going to be watching her closely to make sure it's not too much. I don't anticipate it overwhelming her though. She has such an eager attitude most of the time.
Her 2nd session of OT was yesterday. Ms.C. had her make cookies. She made her touch and smell all the ingredients. McKenna did fine with ingredients that she is use to. I make cookies with her often, but only 1 recipe and I don't encourage her hands to be in the ingredients. I will now... The ingredients that she had never seen before she would literally scream and dive for me, bury her face in my shirt and refuse to touch it or smell it. She was fairly agitated and uncomfortable the whole time, but she did mostly hold it together and participate. Ms. C. is allowing Cole to participate as long as he cooperates and models good things. Cole has suspected sensory issues himself so I'm hoping some of this therapy will rub off on him. (-:
McKenna really loves her speech therapy with Ms. T. lately. She is so excited when she pulls in the driveway. She dives right in and works hard for the whole hour. Today she didn't pull away and run to me even once. She is consistently putting 3 words together and with relative ease if they are well established words. There were a few words today that gave her trouble. "Banana, Giraffe, Elephant, Gorilla.." Those are hard words though! She even said a 4 word sentence twice. "Hippo in the boat" . . . (-:
McKenna sits in what the OT calls the "w" sit. Her knees together and feet out on either side. Her OT Ms. C. does not want her to sit like that. She'd rather her sit cross legged. Today Ms. T. and I reminded her throughout the whole session. We'd say, "McKenna fix your legs please." She would say, "Oh taaay" . . . in her cute low little voice and then she would always fix her right leg and was unable to fix her left. Every time we had to pick her left leg up with our hands and turn it out so she was sitting properly. We probably did this 10 times or more throughout the hour long speech therapy session. She was very good natured about it today though so that's an improvement.
McKenna had her first appointment Friday at Children's Mercy for Speech Therapy. She met her new therapist. We will call her "Ms. A". She had McKenna trying to blow bubbles. McKenna was unable to purse her lips. We've known since before Christmas that she has reduced motion orally, but I had not really experimented much to see what she can and cannot do. Well 1 for the "cannot do" column . . . "Can't purse lips" . . . *sigh*
McKenna has been reading books to herself lately. It's cute, but a little sad. All she says page after page is ," tuma oh tuma uh" . . . Every once in a while she'll say an actual word she knows, but I've only heard her do that a few times. It sounds like, "tuma oh tuma uh night night.." or "tuma oh tuma uh hosey (horsey).
Anyway... Over all we are moving forward- slowly, but surely . . .
Amber
Monday 8:30 to 9:15-(in home) Occupational Therapy and Sensory Integration
Tuesday 1:45 to 2:45-(in home) Speech Therapy
Wednesday 8:30 to 9:30 (in home) Speech Therapy
Friday 8:30 to 9:15 (at Children's Mercy) Speech Therapy
These pictures are all from Christmas!
McKenna's best friend is her brother Cole.
McKenna loves her Ma! (my mom)
McKenna loves her Pa! (my dad)
I've had to write her schedule on our calendar that hangs on the wall so I can keep it straight. This will be our 1st week to do all of it. We are going to be watching her closely to make sure it's not too much. I don't anticipate it overwhelming her though. She has such an eager attitude most of the time.
Her 2nd session of OT was yesterday. Ms.C. had her make cookies. She made her touch and smell all the ingredients. McKenna did fine with ingredients that she is use to. I make cookies with her often, but only 1 recipe and I don't encourage her hands to be in the ingredients. I will now... The ingredients that she had never seen before she would literally scream and dive for me, bury her face in my shirt and refuse to touch it or smell it. She was fairly agitated and uncomfortable the whole time, but she did mostly hold it together and participate. Ms. C. is allowing Cole to participate as long as he cooperates and models good things. Cole has suspected sensory issues himself so I'm hoping some of this therapy will rub off on him. (-:
McKenna really loves her speech therapy with Ms. T. lately. She is so excited when she pulls in the driveway. She dives right in and works hard for the whole hour. Today she didn't pull away and run to me even once. She is consistently putting 3 words together and with relative ease if they are well established words. There were a few words today that gave her trouble. "Banana, Giraffe, Elephant, Gorilla.." Those are hard words though! She even said a 4 word sentence twice. "Hippo in the boat" . . . (-:
McKenna sits in what the OT calls the "w" sit. Her knees together and feet out on either side. Her OT Ms. C. does not want her to sit like that. She'd rather her sit cross legged. Today Ms. T. and I reminded her throughout the whole session. We'd say, "McKenna fix your legs please." She would say, "Oh taaay" . . . in her cute low little voice and then she would always fix her right leg and was unable to fix her left. Every time we had to pick her left leg up with our hands and turn it out so she was sitting properly. We probably did this 10 times or more throughout the hour long speech therapy session. She was very good natured about it today though so that's an improvement.
McKenna had her first appointment Friday at Children's Mercy for Speech Therapy. She met her new therapist. We will call her "Ms. A". She had McKenna trying to blow bubbles. McKenna was unable to purse her lips. We've known since before Christmas that she has reduced motion orally, but I had not really experimented much to see what she can and cannot do. Well 1 for the "cannot do" column . . . "Can't purse lips" . . . *sigh*
McKenna has been reading books to herself lately. It's cute, but a little sad. All she says page after page is ," tuma oh tuma uh" . . . Every once in a while she'll say an actual word she knows, but I've only heard her do that a few times. It sounds like, "tuma oh tuma uh night night.." or "tuma oh tuma uh hosey (horsey).
Anyway... Over all we are moving forward- slowly, but surely . . .
Amber
Monday, February 22, 2010
Ups And Downs
Well I seem to have ups and downs quite regularly in regards to how McKenna is doing. Last week I was very up. McKenna is consistently able to put 3 words together and is doing very well at repeating words after us. She has to work pretty hard when she tries a new word, but her established words are pretty consistent. She has just really been doing great during her therapy session with Ms. T.
This week I've been down. She is so hard to understand, she goes from okay to screaming in frustration almost instantly. I know she'd love to express herself so much more than she is capable of and that makes me sad and I'm pretty sure it makes her sad too, but it also makes her mad. Her 4 year old cousin Vallery came over Saturday to play with her and Cole for the afternoon. I was laying on the couch watching olympics so I kept my ear tuned in to everything they were doing. I had to over and over call out to Cole, "Cole-- where is McKenna? What is she doing?" Because I never heard her voice. Cole and Vallary were just jabbering away while they played. Cole would call back, "she's right here mom- playing with us." She was very very quiet all afternoon.
McKenna had her first visit this morning from her OT Ms. C. This therapy is called "sensory integration". I'll write more about it in a few weeks when I have a better handle on exactly what it is. I can say that McKenna spent most of the session frustrated and unhappy. I really liked Ms. C. though and I think it will just take McKenna a few weeks to get use to Ms. C. and understand what is expected of her. We were supposed to just have this therapy twice a month, but after the session Ms. C. suggested that McKenna needed and would benefit more if it was every week. I agreed. McKenna definitely put her worst face forward this morning for her.
McKenna is potty trained! I'm so proud of her. It has taken a couple of weeks, but she has done very well.
Thank you for your care and prayers!
Amber
This week I've been down. She is so hard to understand, she goes from okay to screaming in frustration almost instantly. I know she'd love to express herself so much more than she is capable of and that makes me sad and I'm pretty sure it makes her sad too, but it also makes her mad. Her 4 year old cousin Vallery came over Saturday to play with her and Cole for the afternoon. I was laying on the couch watching olympics so I kept my ear tuned in to everything they were doing. I had to over and over call out to Cole, "Cole-- where is McKenna? What is she doing?" Because I never heard her voice. Cole and Vallary were just jabbering away while they played. Cole would call back, "she's right here mom- playing with us." She was very very quiet all afternoon.
McKenna had her first visit this morning from her OT Ms. C. This therapy is called "sensory integration". I'll write more about it in a few weeks when I have a better handle on exactly what it is. I can say that McKenna spent most of the session frustrated and unhappy. I really liked Ms. C. though and I think it will just take McKenna a few weeks to get use to Ms. C. and understand what is expected of her. We were supposed to just have this therapy twice a month, but after the session Ms. C. suggested that McKenna needed and would benefit more if it was every week. I agreed. McKenna definitely put her worst face forward this morning for her.
McKenna is potty trained! I'm so proud of her. It has taken a couple of weeks, but she has done very well.
Thank you for your care and prayers!
Amber
Thursday, January 28, 2010
Working Hard
Yikes! It has been way too long since I updated here for McKenna. The holidays were so busy, then gearing up for my brother's wedding my health kind of fell apart and we are under the gun to finish choreography for the show this summer with our dance students . . . I also make Jimmie's blog a priority over this one. I really want to update this once a week though, so I'm making that my goal again.
McKenna has really made good progress. Especially in the last 3 weeks or so. It seems like something has clicked (on a McKenna level) and she is having an easier time getting words out. It has been super exciting. This week we started our new plan which includes speech therapy twice a week now. Tuesday she had such a good session I was tearing up. I'm not sure why the tears come. It's just very emotional to hear her being successful with her speech. She worked so hard! She made good attempts over and over and probably about 70 percent of these attempts ended in success with the word or 2 word combo that she was working on! She is even starting to work on 3 words together.
She still has a lot of work to do because probably 90 percent of her speech in unintelligible to listeners who do not spend A LOT of time with her. She does still show decreased motion with her mouth in general. Sometimes she kind of sounds like she has marbles in her mouth while she's speaking. Right now she's whining at me and saying, "cmiiiiie mom, cmiiie" the "cmiiie" is said with an nasal emission . . . She's saying, "come on" or "come here" mom. We call her speech- "McKenna speak" . . . (-:
One of my bigger concerns for her has been her self confidence over this. She is super aware and self conscious about her speech especially when she is put on the spot about it. Ms. T. has suggested that she might do better in therapy if Cole and I were not there. We will look into to taking her to Ms. T.'s clinic later this year. For now I have sat back a few feet away and not overtly participated and that really has seemed to help. McKenna has made more attempts and been much more focused in the sessions where I'm there, but trying to look like I'm not paying attention. (-:
In play with her peers she's never had the opportunity to play with other children without Cole. My suspicion is that it would not go great. She quickly becomes confused, frustrated and discouraged when someone can not understand her. I have listened and spyed while she and Cole play with other kids and Cole (bless his heart) translates for her and includes her the whole time. While I was in Canada- David's brother and girlfriend watched Cole and Kenna for most of Saturday. Rachel (girlfriend) told me that by the end of the day McKenna was extremely agitated and upset. She kept trying to communicate her wants and needs but was not being understood. Cole was there, but playing with his cousin and not paying attention. Rachel finally called Cole over who did help translate, but at that point McKenna was just on overload with her frustration.
We met with the school district on Monday to talk about transitioning from "First Steps" when McKenna turns 3 this summer. Dave and I were impressed with everyone we met, with the facility and the obvious care and passion they put into the kids who are struggling a bit. McKenna will have to go through a process to determine if she qualifies or not for their services. They told us that unfortunately because of funding (or lack there of) they can only take the more severe cases that qualify on a strict criteria. I can't imagine McKenna not qualifying, but we'll see.
Love,
Amber
McKenna has really made good progress. Especially in the last 3 weeks or so. It seems like something has clicked (on a McKenna level) and she is having an easier time getting words out. It has been super exciting. This week we started our new plan which includes speech therapy twice a week now. Tuesday she had such a good session I was tearing up. I'm not sure why the tears come. It's just very emotional to hear her being successful with her speech. She worked so hard! She made good attempts over and over and probably about 70 percent of these attempts ended in success with the word or 2 word combo that she was working on! She is even starting to work on 3 words together.
She still has a lot of work to do because probably 90 percent of her speech in unintelligible to listeners who do not spend A LOT of time with her. She does still show decreased motion with her mouth in general. Sometimes she kind of sounds like she has marbles in her mouth while she's speaking. Right now she's whining at me and saying, "cmiiiiie mom, cmiiie" the "cmiiie" is said with an nasal emission . . . She's saying, "come on" or "come here" mom. We call her speech- "McKenna speak" . . . (-:
One of my bigger concerns for her has been her self confidence over this. She is super aware and self conscious about her speech especially when she is put on the spot about it. Ms. T. has suggested that she might do better in therapy if Cole and I were not there. We will look into to taking her to Ms. T.'s clinic later this year. For now I have sat back a few feet away and not overtly participated and that really has seemed to help. McKenna has made more attempts and been much more focused in the sessions where I'm there, but trying to look like I'm not paying attention. (-:
In play with her peers she's never had the opportunity to play with other children without Cole. My suspicion is that it would not go great. She quickly becomes confused, frustrated and discouraged when someone can not understand her. I have listened and spyed while she and Cole play with other kids and Cole (bless his heart) translates for her and includes her the whole time. While I was in Canada- David's brother and girlfriend watched Cole and Kenna for most of Saturday. Rachel (girlfriend) told me that by the end of the day McKenna was extremely agitated and upset. She kept trying to communicate her wants and needs but was not being understood. Cole was there, but playing with his cousin and not paying attention. Rachel finally called Cole over who did help translate, but at that point McKenna was just on overload with her frustration.
We met with the school district on Monday to talk about transitioning from "First Steps" when McKenna turns 3 this summer. Dave and I were impressed with everyone we met, with the facility and the obvious care and passion they put into the kids who are struggling a bit. McKenna will have to go through a process to determine if she qualifies or not for their services. They told us that unfortunately because of funding (or lack there of) they can only take the more severe cases that qualify on a strict criteria. I can't imagine McKenna not qualifying, but we'll see.
Love,
Amber
Wednesday, December 16, 2009
Catch Up
I've missed a week. )-: I'll catch up . . .
McKenna actually missed her therapy session last week because she came down with another cold. Right before I was due to leave for Vancouver too. That week leading up to my trip McKenna really started putting two words together! We think she has around 50 words now. Ms. T. explained that is the magic number for kids to start putting two words together. Suddenly McKenna had so many two word combinations within her 50 words that I couldn't keep track. It was so exciting!
She did fine while I was gone. The mornings were the hardest for her. She would wake up and cry and look for me. )-: After that though she went through her days and even nights fairly happily and normally.
McKenna continues to really struggle with articulation with most of her 50 words. Very few of them are intelligible to strangers. I know this will come later. I just continue to be sobered by how far she has to go, how slow it is and how hard she has to work.
She had two sessions this week to make up for last week. Tuesday she did well and worked pretty hard. At one point though she was really visibly groping with her mouth moving and twisting and no sound coming out. Her problems are most obvious when she is excited, motivated and trying her hardest. That is so hard for me to see. A lot of the time (like today) in therapy- she refuses to speak, by pursing her lips if she has to work. If she's not excited about the game or toy we are using for incentive she refuses to play. Today we were making Santa faces. Cole got his plate, eyes, cotton balls etc... McKenna only performed for the eyes, so she sat and forlornly watched Cole put his Santa together. Her shoulders were slumped, she would reach for everything, but as soon as Ms. T. made it clear she had to say something for it she just sat passively.
I was really frustrated and discouraged today. She was even refusing to say stuff I know and even more important "she knows" she can say. We worked for 20 minutes to get her to say something she can already say. That is discouraging. Ms. T. feels that the novelty and fun of therapy is wearing off and now we are also dealing with some attitude. She does *NOT* want to frustrate McKenna. She wants this to be as fun and rewarding as possible. She works so hard to build McKenna up and encourage her. However if she asks McKenna to do something and she doesn't do it her policy is to follow through in making McKenna obey that request in some way. The end could be that she resorts to asking McKenna for only a sign and then if she won't do that then she says,"ok- then I'll help you." Then she takes McKenna's hands and forces the sign. She does not treat McKenna as if she is in trouble she just calmly and patiently follows through. She asked me if I was "cool" with this and I wholeheartedly am! Ms. T. really wants to find the right balance for McKenna in how hard we make her work. So do I!
It's just hard because she is 2 and a half. Your 2 year old isn't supposed to have to work like this. In my mind her days should be full of fun, growing and play with a bit of clean up. It's a hard pill to swallow to know that she is going to be working so hard for years possibly- just to speak intelligibly.
Another thing that is hard lately is McKenna does this thing where she gets stuck, like a broken record- on something she is saying. Then she says it loudly, over and over and over. It drives Cole INSANE! He gets so agitated and upset. He starts yelling at her to be quiet and he starts crying and asking why does she just keep saying that? It's especially bad when she's directing it at him. The other day she yelled, "NO MIEE" (no mine) at him for 15 minutes. After the first 2 times he had already given her what she wanted and she just kept standing there yelling it over and over. I tried to distract her, but that didn't work. I do not feel like I can discipline her as it is totally neurological. She is literally programing her brain to yell "no mine" and I don't want to stop that. I ended up having to remove Cole from the situation as much as possible. I want him to learn to ignore her when she does that.
It happens every day. As Cole screams and cries for her to stop, she just stands there looking a bit upset saying "whatever" over and over.
Any ideas about how to deal with this? I mean she could be saying "yai pees" (yes please) over and over and it still makes Cole crazy and upset. I have done my best to explain to him McKenna has issues, McKenna cannot talk like you and me, McKenna is trying to fix her brain, McKenna is practicing her speech... The fact remains Cole can't handle it. This is a problem.
We are starting to use more signs in therapy. Children's Mercy recommended that and also some of you who are following this blog. I feel it is a very good idea to pursue that more. The signs do seem to act as a trigger for McKenna's brain. They often seem to help her get the word out and they help with articulation.
We are going to pursue Sensory Integration Therapy for McKenna. It snowed for the first time this season last week. I took her out in it and she cried, whined, moaned and sometimes screamed the entire time she was out there. She couldn't stand to walk in it, touch it, have it on her boots, gloves, coat, snow pants... It was pretty dramatic. We stayed out for over 30 minutes and it never got better. I even let Cole stay out after we went back in and she was perfectly content to watch him and not join him! That's crazy . . .
I wrote a letter about the kids for everyone helping with them while I was away. I'll post some sections about McKenna next time. This post has gotten too long.
Love,
Amber
McKenna actually missed her therapy session last week because she came down with another cold. Right before I was due to leave for Vancouver too. That week leading up to my trip McKenna really started putting two words together! We think she has around 50 words now. Ms. T. explained that is the magic number for kids to start putting two words together. Suddenly McKenna had so many two word combinations within her 50 words that I couldn't keep track. It was so exciting!
She did fine while I was gone. The mornings were the hardest for her. She would wake up and cry and look for me. )-: After that though she went through her days and even nights fairly happily and normally.
McKenna continues to really struggle with articulation with most of her 50 words. Very few of them are intelligible to strangers. I know this will come later. I just continue to be sobered by how far she has to go, how slow it is and how hard she has to work.
She had two sessions this week to make up for last week. Tuesday she did well and worked pretty hard. At one point though she was really visibly groping with her mouth moving and twisting and no sound coming out. Her problems are most obvious when she is excited, motivated and trying her hardest. That is so hard for me to see. A lot of the time (like today) in therapy- she refuses to speak, by pursing her lips if she has to work. If she's not excited about the game or toy we are using for incentive she refuses to play. Today we were making Santa faces. Cole got his plate, eyes, cotton balls etc... McKenna only performed for the eyes, so she sat and forlornly watched Cole put his Santa together. Her shoulders were slumped, she would reach for everything, but as soon as Ms. T. made it clear she had to say something for it she just sat passively.
I was really frustrated and discouraged today. She was even refusing to say stuff I know and even more important "she knows" she can say. We worked for 20 minutes to get her to say something she can already say. That is discouraging. Ms. T. feels that the novelty and fun of therapy is wearing off and now we are also dealing with some attitude. She does *NOT* want to frustrate McKenna. She wants this to be as fun and rewarding as possible. She works so hard to build McKenna up and encourage her. However if she asks McKenna to do something and she doesn't do it her policy is to follow through in making McKenna obey that request in some way. The end could be that she resorts to asking McKenna for only a sign and then if she won't do that then she says,"ok- then I'll help you." Then she takes McKenna's hands and forces the sign. She does not treat McKenna as if she is in trouble she just calmly and patiently follows through. She asked me if I was "cool" with this and I wholeheartedly am! Ms. T. really wants to find the right balance for McKenna in how hard we make her work. So do I!
It's just hard because she is 2 and a half. Your 2 year old isn't supposed to have to work like this. In my mind her days should be full of fun, growing and play with a bit of clean up. It's a hard pill to swallow to know that she is going to be working so hard for years possibly- just to speak intelligibly.
Another thing that is hard lately is McKenna does this thing where she gets stuck, like a broken record- on something she is saying. Then she says it loudly, over and over and over. It drives Cole INSANE! He gets so agitated and upset. He starts yelling at her to be quiet and he starts crying and asking why does she just keep saying that? It's especially bad when she's directing it at him. The other day she yelled, "NO MIEE" (no mine) at him for 15 minutes. After the first 2 times he had already given her what she wanted and she just kept standing there yelling it over and over. I tried to distract her, but that didn't work. I do not feel like I can discipline her as it is totally neurological. She is literally programing her brain to yell "no mine" and I don't want to stop that. I ended up having to remove Cole from the situation as much as possible. I want him to learn to ignore her when she does that.
It happens every day. As Cole screams and cries for her to stop, she just stands there looking a bit upset saying "whatever" over and over.
Any ideas about how to deal with this? I mean she could be saying "yai pees" (yes please) over and over and it still makes Cole crazy and upset. I have done my best to explain to him McKenna has issues, McKenna cannot talk like you and me, McKenna is trying to fix her brain, McKenna is practicing her speech... The fact remains Cole can't handle it. This is a problem.
We are starting to use more signs in therapy. Children's Mercy recommended that and also some of you who are following this blog. I feel it is a very good idea to pursue that more. The signs do seem to act as a trigger for McKenna's brain. They often seem to help her get the word out and they help with articulation.
We are going to pursue Sensory Integration Therapy for McKenna. It snowed for the first time this season last week. I took her out in it and she cried, whined, moaned and sometimes screamed the entire time she was out there. She couldn't stand to walk in it, touch it, have it on her boots, gloves, coat, snow pants... It was pretty dramatic. We stayed out for over 30 minutes and it never got better. I even let Cole stay out after we went back in and she was perfectly content to watch him and not join him! That's crazy . . .
I wrote a letter about the kids for everyone helping with them while I was away. I'll post some sections about McKenna next time. This post has gotten too long.
Love,
Amber
Thursday, December 3, 2009
Isn't It Ironic
Dave and I were talking yesterday about how ironic McKenna's diagnosis is. Anyone that knows me knows I'm a talker . . . a big talker . . . I can talk and talk and talk. I love to communicate, it's one of my strengths, it's a huge security for me. I also love to listen to other people talk. I love people and I love connecting. To communicate and listen well brings you success in life.
For a brief second here and there I can appreciate the irony and have a little humor about the fact that I could have a daughter who can't talk! What??
So in the middle of our conversation Dave knocked me in the arm and said, "yeah- sometimes I wish YOU had verbal dyspraxia!" I hit him and laughed.
My laugh, however is only skin deep. The corners of my mouth turn up, sound comes out, but my eyes are not laughing. My heart is not laughing.
I cannot imagine a world where simply speaking is difficult. I guess I put a lot of my security in that power. I sense that a whole new world is about to open up for me. A world in which McKenna is supposed to be the recipient of growth, but hopefully I will be a better person for this. I know in my head that there is so much more to communication then words, but my heart has not learned this lesson yet.
I am looking forward to this journey . . . I am.
Love,
Amber
For a brief second here and there I can appreciate the irony and have a little humor about the fact that I could have a daughter who can't talk! What??
So in the middle of our conversation Dave knocked me in the arm and said, "yeah- sometimes I wish YOU had verbal dyspraxia!" I hit him and laughed.
My laugh, however is only skin deep. The corners of my mouth turn up, sound comes out, but my eyes are not laughing. My heart is not laughing.
I cannot imagine a world where simply speaking is difficult. I guess I put a lot of my security in that power. I sense that a whole new world is about to open up for me. A world in which McKenna is supposed to be the recipient of growth, but hopefully I will be a better person for this. I know in my head that there is so much more to communication then words, but my heart has not learned this lesson yet.
I am looking forward to this journey . . . I am.
Love,
Amber
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