McKenna JOY!

McKenna Joy is a "joy"!

Mickey (She likes to be called "Mickey" over "Kenna" now.) is doing great. She still struggles with her speech, but she says pretty much everything she wants to and she is understood most of the time. She will be 4 years old in less than a month! She is loving ballet classes. Things do not come easily for her, but just like with her speech, she works very very hard and achieves success.

Besides continuing speech concerns, which I will get into next- she has a VERY persistent "w" sit.

This is apparently a sign of possible low tone.. She struggles a bit more than is usual in ballet, she trips and has trouble with stairs and randomly falls off of her chair. So I plan to ask her pediatrician for a letter of referral to PT/OT at children's mercy for an eval and possible therapy for all of that.

At this time she is not in any speech therapy. I am waiting for a call back from the school district to schedule an evaluation just to monitor her development, but I'm almost 100% sure she will not qualify for speech therapy. Because of funding cuts children have to be significantly globally delayed to qualify for their special programs. I do have an appointment for her to be reevaluated by Children's Mercy in July. I'm not sure what to expect as far as the outcome. I think she's doing very very well, but I'm also a little lost now on what a "normal" 4 year old should sound like.

I am due to have a baby girl in October and although McKenna knows and totally understands the baby is a girl and that "she" refers to a girl- she still mostly refers to her as "he". McKenna can say "she" but it's harder so in the middle of a sentence it comes out "he".

Some of her approximate pronunciations are hilarious. For instance "Astronaut" is "estersnot". "Roller Coaster" is "whirl coaster". "Ukulele" is "ookawayee". "Guitar" is "katar". There are many more. There are also many particular letters and letter combos she doesn't say. They vary from the beginning, middle and end of words. "sh", "r", "l", "t", "th","j", "m", "n", "s" there are more and maybe there is a very definable pattern, but I just haven't noticed.

Talking about yogurt with Cole she asks, "why don't you want uh chunks to be in". "Des be brave about chunks." "yook Cole I eat chunks". Her sentence structure and cadence can be a bit awkward, but it serves the purpose of communication without excessive work on her part. I still think she comes across as younger than she is because of how she sounds. In other words she communicates more mature and advanced ideas and concepts that may take a stranger by surprise because what she is actually communicating doesn't match how she sounds.

She still has times where she has dysfluency as well. The way I see it is she gets stuck on a word while she is working on getting the rest of the sentence out. Definitely a "dysfluent groping".

She also communicates her fatigue with speech sometimes. She'll say, "I'm tired of talking".

Overall though she continues to add words and develop very well with the level she is communicating at. This week she has added, "actually" it sounds like "actuwee", but she is using it correctly.

Mickey is an amazing little girl. Her work ethic continues to astound me. When she decides she wants to conquer something, she does! Whether something physical or speech related she works it ON HER OWN until she's happy with the results.

She is aware she has a speech problem. In fact she helped me write this blog today. She gave me words she has trouble saying. She has a great attitude about it. And most of the time can laugh at herself about her funny pronunciation.

I love love love my beautiful girl!

Amber

Speech Update

Wow - it's been way too long since I posted on this blog. It was a busy summer! Jimmie's blog always gets priority. (-:

McKenna is not currently in therapy right now. First Steps dropped her when she turned 3 years old in July. They do not treat anyone above 3. Children's only commits to 6 months at a time. If the therapist feels its needed sometimes you can get another 6 months, but McKenna's therapist did not feel it necessary to continue. Her reason was because McKenna is now caught up in sufficient range with normal 3 year olds.

I teared up as I left McKenna's last session. I was just emotional. She is doing really well! However there are still some problems and I feel we are being inconsistent to not have her in therapy. I'll share about that more, but first here is McKenna in her last session with Ms. T.

Ms. T. is the one really responsible for getting McKenna to a place where the words she spoke were consistent enough to understand. She gave McKenna the tools to get words from her brain and out of her mouth. She did this by drilling McKenna over and over and over. It was really hard work, especially for a 2 year old, but I'm really glad she was tough on her and knew what she needed.

This is McKenna's last session with her OT Ms. Cindy.

Ms. Cindy was great. We learned that McKenna has minor sensory issues, but Cole has a much more significant sensory problem. She always included Cole in her sessions and encouraged me to get help for him. We had Cole evaluated this summer at Children's and he is in therapy once a week for eating issues, hypotonia and sensory integration.

This is McKenna's last session with her ST at Children's- Ms. Aleah.

Aleah was wonderful. McKenna really enjoyed these sessions and it was good for her to be away from her home environment once a week for this session. McKenna loved her treasure chest game, blowing bubbles and playing with play dough. Aleah drilled "he" and "she" a lot near the end. McKenna still does not get that right most of the time, but she does not say any words with the "s" sound at the beginning spontaneously. I should clarify- she does say "s" words- just not with the "s" sound. "snake" is "nake", "spider" is "piher" etc... I think that "she" comes out "he" . . .

So the reason I think we are being inconsistent by not having McKenna in therapy is that she still has noticeable problems. I have written many times that the most significant problem with McKenna is the very wide gap between her developmental/cognitive level and her speech. That gap still exists. She still has noticeable trouble getting words out. This manifests in a few ways:

1. Stuttering or Disfluency. At times McKenna stutters repeating the same word or part of that word over and over. Or sometimes she elongates a sound. Her therapist said in August that she should not be doing that anymore in about 6 weeks if it was normal developmental stuttering. We are past the 6 week mark and she still does. Ms. A. also said stuttering is a separate (though closely related) neurological problem from Apraxia. I'm sure that is the case with kids who are not Apraxic. My theory- however is that this is not separate from McKenna's Apraxia. The severity of her stuttering comes and goes and seems to get worse when she has made a cognitive leap in "receptive speech and language development. I did some research and came across the term, "Disfluent Groping". I think this perfectly describes what McKenna is doing. "Groping" is when there is a struggle to get a word out. McKenna used to grope silently. You could see her lips working, her eyebrows tense etc.. but she was making no sound. Now I think she is still groping- only verbally. She has always had and increase of frustration and groping when she has made a developmental leap cognitively. I think this is because the gap between her receptive speech/language abilities and her expressive speech widens. Her developmental jumps with "expressive speech" happen less often and are smaller, so the gap remains.

Here is a video of her speaking with a lot of "disfluent groping"/"stuttering" present. The video quality is horrible so just turn your volume all the way up and listen. She says, "My truck is hiding from the halloween ghost." then she walks over to her truck and says, "truck the halloween ghost is not real!" (Our neighbors have a scary halloween ghost hanging from their tree...)

2. Another way her speech difficulties are noticeable is that she tires when she plays (verbally) very quickly. She has to stop and rest for a while. Cole is often upset because he wants to keep playing their game while McKenna is just wiped out on the couch having one of her quiet times. Also sometimes she'll keep playing, but she'll stop being verbal and that also frustrates Cole. He'll say, "Mom why is she not talking!!!".

3. And finally McKenna has started to communicate with words about her speech problem. She was trying to get something out the other day and she was stuck on a vowel sound. She struggled for so long she finally stopped and said, "Ugh, mommy- I can't find the words!"

So- it is true that she is now caught up with normal 3 year olds, but the gap is still there and her speech issues are still noticeable. I understand there may always be a gap. This is because Apraxia is (according to the experts) something you will always have. So to me that means McKenna will never have complete ease with her expressive speech. However the goal of therapy is to render that "unnoticeable". I want her brain to know and absorb all of the tricks to hide this deficit while she is young so that she "seems" completely "normal" as an adult.

Therefore my conclusion is:

She should still be in therapy!

I'm working on it. A few things need to be worked out related to "who?" she has therapy with and "how?" will we pay for it.

I appreciate your care and prayers!

For the very few who read this blog and not Jimmie's... It seems that an "Apraxia" diagnosis for him is looking more and more likely. )-: More about that soon.

Here is a picture from our fall photo shoot Rachael organized the other day.

Beautiful McKenna:

Love,

Amber

Update Coming...

Wow! May was the last time I updated here. That's horrible. )-: I'm working on an update now.

Coming soon....

Amber

Major Progress!

I met with the school district a few weeks ago for a follow up meeting to the testing they did with McKenna. I was right-- she tested out of help from the school district. They said her scores were awesome, exactly what every parent would want to see of their 2 1/2 year old. They continued to be incredibly encouraging and complimentary of everything we've done with McKenna. Ms. M said if I start having any concerns or feel McKenna's development is dropping off again that I can call her and they can always bring her back in for another eval.

I teared up in the meeting as I tried to voice my concerns. They really listened to everything I had to say and really considered it. Ms. M. said she would over rule her scores and have her accepted to the pre-school as an "at risk" child. But that would not qualify her for the "disabilities program" which means no "one on one" help, no speech therapy- basically just pre-school. I found out last year they have something called "Friday School" so I asked about that and they said that would be fine as well. Everyone that works there is especially trained and qualified to work with kids who are having problems so I guess that would be the reason to do either the 4 day a week pre-school or "Friday School". I will for sure have her tested again next year to make sure she is continuing to progress.

We are considering "Friday School", but we may be able to get another 6 month session of speech therapy from Childrens. McKenna's therapist at Children's has said she would recommend her- based on our attendance, our work ethic and the fact that McKenna would not be receiving speech therapy anywhere else. Right now Friday is the only day that has a time that works for us at Children's so if I had to choose I'd obviously fore go "Friday School" for Speech Therapy at Childrens... Maybe we can work it out to do both. We'll see.

We have already decided not to do the 4 days pre-school. I'm home schooling Cole this year for kindergarten and it makes no sense to me to keep him home and send McKenna to school.

Ms. T. (McKenna's First Steps therapist) gave her the Goldman-Fristoe last week to make sure that she scored ok on articulation. Her thinking was that the PLS-4 played into McKenna's strengths. However she scored the low end of average on the Goldman-Fristoe! That score would not qualify her for any help with the district either. So basically McKenna is doing AWESOME and has come SO FAR!! I have worked through my feelings about everything and have come to a place of peace and excitement about how she's progressing and her future.

Dave and I feel that she needs to continue therapy to maintain this pace of improvement. She still does not speak fluently like a normal (almost) 3 year old, but she is so improved it's AMAZING.

Here she is singing "It's raining it's pouring..." after her shower this morning.



A few things she still struggles with:

She often takes long pauses in therapy to answer questions. We are not sure if it's a delay while she figures out the question or a delay as she tries to get the words out- or a little of both. We suspect either a little of both or just getting the words out. She is very good in her answers so we know she is understanding questions very well.

She is very confused about "he" and "she". She knows the difference between girl and boy, but the pronouns seem to confuse her to the point of frustration.

Saying the "s" sound at the beginning of a word is very hard for her. She needs a lot of prompting/help to achieve an "s" at the beginning of a word. Spontaneously she says, "piher" for "spider" , "fiffers" for "scissors" etc... "L" is hard at beginning of a word as well. I think that's normal for her age though.

Her speech is fairly broken, she marks articles and prepositions with the sound "na" a lot of the time. So for instance, "The dress is cute" might be, "na dwess na coot." But I can understand her and so can others. That is exciting!

She is communicating her personality now by expressing her feelings about things. She told me the other day, "ooo hut na fweewings mom.." "You hurt my feelings mom." and she'll say, ah weowee maad!" and we hear, "Cole not sharewing.." all day long. (-: Her flow and intonation is not perfect, but it could be much worse. Her therapists expected her to be a bit more stilted and monotone when she started speaking in sentences so they are pleasantly surprised.

I had an interesting conversation with Ms. A. her Children's therapist last week. She was talking about how far McKenna had come. I asked if her amazing progress meant that she does not have Apraxia..?? She answered, No- McKenna definitely has Apraxia, but that McKenna is the poster child for early intervention. Meaning McKenna is exactly the kind of child with exactly the kind of diagnosis that can be helped in a huge way if you catch it early and work hard. She also said that she did not think McKenna would have been speaking right now maybe even at ALL without the work we've done.

I'm so thankful for how well she is doing and for all of the wonderful therapists that have worked with her this past year!

Love,
Amber

Pronouns Schmronouns

McKenna is continuing to make progress. No big jumps in the last 2 weeks though. The big thing we have been focusing on is pronouns. Particularly we are wanting her to say "he" and "she" when it's appropriate. That has been very slow going. She can properly identify a girl and a boy, but is in no way consistent saying "he" in relation to the boy and "she" for the girl.

She is also showing some confusion and lack of understanding with "wh" questions. I've tended to give her the benefit of the doubt when it comes to her receptive language comprehension, but it is becoming more clear over the last 2 weeks that she does have some holes where receptive language is concerned.

She has worked hard on identifying and properly labeling action words with "ing" and has made progress with that. Her ST at Children's feels she is doing well enough on that to move on and call it "goal met" . . . That was nice to hear on Friday because the confusion with the questions and the pronouns persists despite a lot of hard work, which is frustrating and a bit discouraging.

McKenna has come far enough now that she is starting to communicate with words about things other than her needs. That has been very special to me. She is starting to talk about her play, her inner imagination, her feelings even. Cole has been asking her to participate in story telling forever. When he has asked her to tell a story she has always just given him this look . . .


The other day for the first time she found enough words to tell a story. She copied (sort of) a ghost story I had told (at Cole's request) a few minutes before. She said, "once a na a time... uh ghost girl.. an her hair fall off..." LOL! She laughed with delight when she finished! She then told that story in the exact same way like 6 more times each time laughing with joy at the end.

She still has frustration. It comes out when she is telling me something and she wants to make sure I understand her word for word. She repeats the sentence louder and louder until I repeat it back to her. And if I repeat the sentence and get 1 word wrong i.e. different from the word she was trying to say she repeats the sentence in a screaming frustrated voice that makes it that much harder for me to decipher. She just gets really tired sometimes of having to work so hard to be understood and I get just as tired trying to understand. At the end of the day we are both at our worst. I have trouble concentrating on her speech and she has more trouble finding words. ARG!



Sometimes when she's tired or there is just too much to say she is perfectly quiet, but you can tell by the way she looks at you and her expression that she has a lot to tell you.. It's just not able to come out.


She has another nasty virus. Lots of snot, coughing, 1 puke and some runny stools...

Here she is in her persistent "w" sit. She can manage to sit like that everywhere! (-:


This Tuesday is our meeting with the school district about her qualification for help. I'm praying for speech therapy a couple times a week. I'm fine with her not doing the whole program.



I will update again next week . . .

Love,
Amber

School District Evaluation

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

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