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

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

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

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

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

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

"I Dance" And Children's Mercy Evaluation

We had a wonderful Thanksgiving. We drove to Columbia where Uncle Brian and Aunt Lisa hosted dinner. McKenna slept a lot of the way there and was completely overloaded and overwhelmed for the first couple hours after we got there. The house was big, lots of noise, 3 dogs and 30 people! After an hour or two she adjusted and did awesome.

The highlight was definitely late evening cousin Curtis played his fiddle with Pa (dad) playing the guitar. McKenna loved the live music. She and Cole danced and danced. She was so excited about it that whenever they finished a song she would say and sign "mooore" in the silence in front of everybody. That is big for her. She does not like to speak in front of people. She also was saying "ah dence" (I dance!)over and over as she twirled, jumped, swayed and kicked her legs. It was so precious!







Today was McKenna's evaluation with Children's Mercy Hospital for hearing and speech. There were no surprises today. That is good- I guess in some ways, but bad/sad in others...

McKenna's hearing was determined to be normal. That *is* good news.

I was not expecting, but perhaps I was hoping that maybe we had jumped the gun with McKenna's "Verbal Dyspraxia" diagnosis. Unfortunately the SLP today does *not* think so. She wrote- probable "Developmental Verbal Apraxia" on her paper. That is not what I wanted to hear. Obviously I wasn't surprised at all, but receiving that diagnosis for the 2nd time now and this time in a very respected hospital clinic has really hit me harder than I thought it would.

Also seeing this on her paper about McKenna:

Expressive Language Disorder - check mark followed by the word, "severe".
Articulation/Phonological Disorder- check mark followed by "severe; probable Apraxia"
Oral Motor Difficulties- check mark followed by "decreased range of motion"

Seeing that written on paper is just hard.

What is even harder is reading the papers she gave to me entitled:

"Letters to the parents of a child with Developmental Apraxia of Speech"

Some parts that jumped out at me:

First of all it was explained that children with DAS can be mildly to severely affected. (Note from me- The "severe" above- refers to her speech and language disorder *not* to her Apraxia. It's severe enough that it points towards "Apraxia". The severity of her Apraxia is yet to be determined..) Everyone who has looked at McKenna thinks she does have some good things going for her. She is verbal. But no one knows for sure what her future holds. The SLP today says she does think McKenna will be a verbal communicator. I'm glad she thinks that. She said McKenna could need pretty intense therapy for 2 to 10 years! Yes-- I said 10 years!!!

I read this in one of the letters:
" Many parents express concern about what the future holds for their child after the diagnosis of DAS has been made. I had the opportunity to follow children with DAS into their mid-20's. As a result of these experiences, it appears that we need to think of DAS as a lifelong communication problem." . . . .

After the "I had the opportunity..." sentence I was hoping to read something VERY different about what the experience of following kids with DAS into their mid-20's has shown. Instead- there it is: like a slap in the face- "a lifelong communication problem" . . .

More on prognosis:
" The eventual results are affected by a number of factors. The most important factors may well be the severity of the problem itself, and the type and length of the remedial services the child receives.... However, the attainment of totally "normal' speech skills may be unrealistic."

Lets hope and pray this is McKenna:

"Children with less severe DAS may well reach a level where they seem to make few, if any, speech errors. However the child and the family need to be counseled that they should not be surprised if DAS-type errors occur occasionally, particularly when the child (and later teenager and adult) is in a stressful speaking situation, is in a situation requiring a great deal of talking, or is tired."

Am I still trying to wriggle out of this diagnosis? Is there still hope that McKenna does not have DAS. Yes a tiny sliver of hope. I asked the SLP today if it's possible we are wrong. She said it's still possible McKenna could surprise us. She is still very young and only has about 50 or 60 words. That is not a huge sample of speech to make a diagnosis, but she said, "surprise". Meaning it would be "surprising" if it turns out McKenna does *not* have DAS. She said we will know within a year.

I know it has been hard and confusing for friends and even family to understand what the big deal is, what all the concern is about. Lots of kids don't talk until age 3. Lots of kids have speech issues, it's not usually a problem later on etc...

All I can say is that there are many types of speech disorders and delays, most of which are resolved to normalcy early on. DAS is one of the worst diagnosis you can get as far as speech issues go. There are many specific characteristics that point towards DAS and now two different organizations of professionals have recognized these characteristics in McKenna and have given her the DAS diagnosis.

I am well practiced at research and diagnosis myself even without professional training on many different subjects. When looking for answers for my daughter before I ever sought out the input of professionals, I too- felt that DAS was the most likely explanation for her particular signs and symptoms as related to her speech. It took me days to figure that out though. The sheer magnitude of speech delays and disorders, their characteristics and symptoms were very overwhelming to sort through. Especially without any training on the subject. After 3 days when I finally stumbled across a description of DAS my heart dropped to my toes, as I said before, this was describing my daughter.

I'd love to be wrong! I'd love it if Ms. T. is wrong, if the whole First Steps team is wrong... I'd love it if the SLP with Children's Mercy is wrong . . . .

Unfortunately as time goes by, as she receives more therapy, as she gets older, as more and more people concur . . . the less likely it is- that we are all wrong.

For my sanity and for the purposes of helping McKenna in every way possible I am choosing to accept this as her diagnosis and operate accordingly.

Prayers are always appreciated!

Love,
Amber

Fighting Discouragement

My beautiful girl!

I am feeling a bit discouraged the last couple of days. There is really not a big reason why, perhaps not even a "good" reason.

She had two therapy sessions this week because we made up for the week she was sick. Ms. T. thinks she's doing great. She is . . . she is adding new words weekly, she is getting more accurate with her attempts, she is much more easily saying two short words together now- like, "bye pa", "ni ni bebe", bye momma", "ni ni daddy" . . . basically "bye...." and "ni....." followed by a name are her two word attempts.

The things I'm discouraged about are "emotional" in McKenna. She seems really frustrated again the last few days. Almost like her brain, her understanding level has gone up another notch leaving her ability to commnuicate further behind. I always notice these cognitive jumps in my children at times and I think she's had one and her communcation has not really jumped and it's really frustrating her. Or perhaps the cognitive jump has just brought more awareness of her deficits, I don't know. She was just very shy and reticient to say "anything" that she didn't feel she could say accurately with Ms. T. this week. This left her only saying words she can already say and basically refusing to even try anything new because she does not want to try and fail. I can just see it in her body. When you ask her to say something she hasn't ever successfully said her body languge just looks defeated. It breaks my heart and it frustrates me because that will only move things along much slower.

She did try a few new things and did have success with "puppy" during therapy which was great. I have been trying to get her to say that for a week. She now will happily say it. But when it takes a week for my soon to be 2 1/2 year old to say the word "puppy" it just . . . well . . . discourages me. Ms. T. did make the comment that it's almost like you have to program every single word with McKenna. After it's been successfully programed she seems to keep it. I guess that is good that she keeps it, but programing painstakingly sometimes a week at a time enough words for her to have an age appropriate conversation seems like an impossibility.

I feel like the older she gets, the smarter she gets the harder this is and I was hoping it would be the other way around.

I have been trying to get her to say "bed" and "sleep", but the smart little stinker will not even try. Instead she inserts an appropriate word that she knows she can say that she knows will communicate the same thing- "ni ni" . . .

It's theraputic for me to spill these negative feelings out here. I'd rather do that then dwell on them or even really talk about them. So if you are reading and praying - thanks! (-:

I know in my head she's not doing badly at all. Ms. T. thinks she's doing GREAT! Sometimes my heart just hurts though...

Love,
Amber

Setback

McKenna did have her therapy on Wednesday, but she still had a little runny nose. Thursday and today her nose has been running horribly again. Every time she gets sick it seems like it takes for EVER for her to get over it. My brother Evan checked her pulses (per-TKM energy method) tonight and told me to apply a #17 sequence on her. I just finished doing that and she was breathing and sleeping easily.

I've got to try to do more TKM on her. Watching Jimmie go through 2 viruses in 2 weeks and do absolutely amazing has made me jealous for McKenna. The only explanation I can see is that he gets TKM applied 3 or 4 times a week! He's a 5 1/2 month old (adjusted age) 24 week preemie for goodness sakes and is kicking my daughter's full term 2 year old booty in how he's handled sickness.

McKenna being sick for "going on" 2 weeks now has set her back with her speech. She has reverted to lots of frustrated "uuuuuuuhhhhing" and whining.

She did not do bad with therapy on Wednesday, but she was very reserved, shy and self conscious again. She kept looking insecurely back at me before she'd try to speak and she hid her face in my shirt a few times. Ms. T. picked up on everything immediately and was very sweet and sensitive with her. McKenna also spoke in a very high voice or almost a whisper a lot of the time. Nothing breaks my heart more than seeing my 2 year old daughter insecure like that. I really really hate that part of this whole issue. A 2 year old should not be having this sort of angst!

Today she did better and I was able to remind her when she was "uuuuuuuhhhhhing" to use her words and she would. Tonight she started trying to tell her baby doll "night night" as she was going to sleep. She worked at it until she got "ni ni bebe" and then she very excitedly said that over and over and over and then for some reason she lost it. She started saying, "bebo" for "baby". It upset her and she kept trying and trying to get it back. She would get "bebe" and then try the "ni ni" and either the "ni ni" would turn to "ni mi" or the "be be" would turn to "bebo". It was sad and I could see the confusion and frustration in her face. She did smile about it and keep trying though. I think she said it right twice and then stopped and fell almost instantly asleep.

Ms. T. has noticed as have I that when McKenna decides she wants to say something on her own she will work really hard until she gets it right- or at least close and then she drill it herself by saying it over and over and over. She literally gets stuck like a broken record. It's interesting though because most experts do believe it is through "drilling" that kids with Dyspraxia learn to speak. So she innately does what she needs to do. It's like she's trying to create a groove in her brain for each new word or each new 2 word combination.

The other thing we've noticed is that periodically during therapy and at times when we are trying to get McKenna to say something she suddenly completely "checks out". Her eyes stare off, but not seeing and she is perfectly still, almost frozen. Then she snaps out of it and makes speech attempts again. Ms. T. doesn't think it's anything to worry about, but she wants us to sit very still and quiet when McKenna does that and wait for her to come back. Ms. T. describes it as "computing time".

Ms. T. wants us to put McKenna on fish oil. I have some here and I'm going to start making her slushies and sneaking it in. (-: I know one of you "M" anynomous posted about starting her on fish oil as well. I'm excited about how this might help her brain.

Thank you for your prayers!

Love,
Amber

P.S. Bronwyn I emailed you back. I can't find your comment?? I would love Elliot's web page. It would be nice to start linking other blogs about kids dealing with Dyspraxia. Try commenting again or email me back!

It's Not Like That, But Thanks

Most of the time I remain encouraged and excited about McKenna's speech and her progress, but every once a while I feel a little down and overwhelmed.

Friday we were at a park playing and there was a little girl who acted McKenna's age running around. At one point her mom said, "ok- it's about time to go. We are going to go over to grandma's..." Then the little girl said, "nooo I don't want to go, I want to keep playing." Those words just flowed so effortlessly out of her mouth. They were so clear and understandable. She expressed herself without a struggle without even thinking about it.

I looked at her mom and asked, "how old is she?" the answer, "she just turned 2 a few days ago." I said, "oh, my daughter is 2 as well." This mother looked at my daughter and then looked at hers and said with a sigh, "my daughter is so small for her age." She *was* small compared to McKenna, but McKenna is really almost 2 1/2. So I said, "yeah, well my daughter can't speak, your daughter is doing great with that!" We smiled at each other and then she said, "My nephew wouldn't speak at all. He just didn't want to. Finally at 2 1/2 or 3 he just started talking. They will talk when they want to, don't you worry about it." I just smiled and didn't say anything.

This exact conversation has happened to me so many times since this summer. With family, friends and strangers. The story is always the same, " . . . so and so didn't say a word until they were 3. They just didn't want to, didn't need to."

This is my own little brother's story. He didn't speak until 3 years old.

I say "thanks" because everyone's heart is to comfort me and encourage me, but unfortunately- it's not like that. McKenna *does* want to speak, *tries* to speak. She tries SO HARD. However she can hardly be understood by a stranger and I have to work very hard and be very observant to understand her myself. We get so excited over "bye bye Pa" and "Ni ni Cole". Don't get me wrong I am still so excited and grateful for how far she's come, but sometimes I can't help but compare with her peers and that is when it hurts.

I don't want McKenna to feel sorry for herself. I don't want her to feel bad about herself. So I will strive not to compare and not dwell on these feelings. We need to set an example in that for her.

It helps that I can let this out here though . . . McKenna has so much to say, so much she wants to express and share about herself, her likes and dislikes, her imagination, her desires, her delight. Sometimes when she's excitedly, but laboriously trying to express something to me and I don't understand 1 word she is saying it's all I can do to smile and hold back my tears. McKenna in a lot of ways is still a mystery to us. That breaks my heart a little every day. I have thought of the deaf and specifically of Helen Keller's tragic, but beautiful and eventually victorious story a lot lately. I find myself thinking of my cousin Camilla who though she can hear and speak perfectly has chosen to be fluent in sign language and works long hours as an interpreter for the deaf. Her heart and desire to facilitate communication is so needed and so important. I will never ever take the power of communication for granted ever again.

Thank you for your prayers!

Love,
Amber

Sick

McKenna got sick Halloween night. She didn't sleep much Saturday night. Sunday afternoon and all night long she ran a fever close to 102. Monday night she ran a fever as well. Now she has lots and lots of snot and a mild cough. Poor baby.

Consequently we had to cancel her speech therapy this week. )-: We were all pretty bummed about that. Ms. T. said we will try to make it up though by having 2 sessions in one week.

McKenna has still made progress this week! Cole has been telling "knock knock" jokes all week. So Kenna has worked very hard on "knock knock". It usually sounds like "Knock guck", Then she'll say, "who who"? For "who's there?" (-: It's crazy cute!

She is saying "please" all the time now. It's basically the word she now uses to ask for anything. I'd rather her attempt to say the object that she wants, but "pease??" is better than "uuuuuhhh". She says it so sweetly and it's so polite it's hard to ever tell her "no". 0-:

She's been really in to helping me in the kitchen this week as well. Everything- cooking, loading the dishwasher, cleaning the floors- she wants to be right in there hands on. Yesterday she helped me cook dinner and when it became clear to her it was done she went into the living room and proudly called Cole in to dinner. She very clearly said, "Cole eat!" Cole and I were so excited! She acted very nonchalant about it though. I really am loving her new level of confidence about her self and her ability to communicate. She is really blossoming from a quiet, frustrated and embarrassed little girl to confident, determined and sweet. She has gained a sense of humor about herself and her speech and most of the time is able to laugh with us at her mistakes instead of clamming up in embarrassment. I am so thankful!

Thank you for your care and prayers!

Love,
Amber

Happy Tears

McKenna's therapy went well yesterday. Since it is the end of the month Ms. T. likes to review the month and discuss any concerns and improvements. As we talked and she looked at her notes we realized how far McKenna has come in just a month. She has added *many* single words. She has also started finishing her words. (all on her own) In fact McKenna works on her speech herself all of the time. I really feel that Ms. T. is providing her with focus and tools to help organize her speaking attempts and McKenna has taken those and is applying them.

She still has an insanely hard time putting two words together. Even something easy like, "bye bye Pa" is too hard. However a few days ago she managed, "ni ni daddy" (night night daddy) for the first time! And then last night she said, "ni ni COLE"!!!

She loves her brother so much and he just ADORES her. To hear her respond to his, "night night Kenna" with "ni ni Cole" was so magical! Cole was just so thrilled he sat up and clasped his hands to his chest and said, "mommy ooooooohh did you hear Kenna just said ni ni Cole she said my name!!!" I was cheering, McKenna was smiling so big. Then the true test (can she do it again?) . . Cole repeated, "night night Kenna" and she again responded, "ni ni Cole" after the 2nd time when she realized she did it again she laughed and laughed with delight. Cole was laughing too. For the next 15 minutes they said, "night night Kenna" "ni ni Cole" to each other followed by delighted laughing. We were in the dark as we really were supposed to be going night night, but I just let them go on and on. I was glad they couldn't see my tears in the dark because it's hard for kids to understand happy tears!

This morning after a bit of coaxing we got McKenna to perform this feat for Ma (my mom). Hearing McKenna put two words together with her brother's name just makes her sound so normal and grown up. It effected my mom the same way. Her eyes filled with tears as we cheered for McKenna.

After listening to McKenna try and sing our bedtime lullaby it always hits me how far we have to go. She somehow not even on accident gets any sound right. Not one consanant, not one vowel through a whole song- until the very end word, "night" . . . Although it's easy to see how far she has to go, today we are thrilled with how far she has come.

I will never forget the pure joy of hearing "ni ni Cole" come out of McKenna's mouth and then hearing the absolute delight and exitement in Cole and Kenna's laughter.

Thank you Lord. (-:

Love,
Amber

Co And Simplify

McKenna said "Co" yesterday for "Cole". That was definitely the highlight of her therapy time. She had another session where she did well for the first part and completely "checked out" for the last part. Overall she was computing very slowly and getting stuck on words. She had gotten up too early. I don't know if that had anything to do with it or not.

Ms. T. said not to get discouraged that every session will not be like last time and to focus on the good parts of each session.

This week McKenna has been speaking in an organized sentence, but it sounds like this:

"meh meh nuh nuh nuh CHOO CHOO meh nemeh neh mu uhuhuh HOLP!"

That means: "come see- my train fell off the track and I need help putting it back on."

Ms. T. feels it's good that she understands sentences and how they are structured and that she's trying to imitate normal speech, BUT it's bad because McKenna bites off way more than she can chew. She keeps telling me that we all need to speak very simply to McKenna so that she tries to imitate that. I can't figure how I can get Dave and Cole to simplify their languge. Dave maybe, but at age 4- Cole is very articulate and elaborates MUCH and I'm just not sure how to get him to talk simply to McKenna.

McKenna will say, "Uhhhhhh Oooooo" . . . and Cole will translate, "Oh you mean you are scared there is a monster in the closet and you thought you heard him snoring?" (-:

I tried to work on vowels all week with McKenna and it really didn't go well. She would give 1 or 2 tries maybe and then just give up. Ms. T. suggested I try and sneak it in more than outright asking her to say something before I reward her with whatever the incentive. I'll have to take this advice because a lot of the time the incentive isn't working. Meaning she just gives up and decides she doesn't want a cookie that much and walks away. Also I'll take her first or second try and tell her "good trying McKenna" even if it wasn't even close to accurate.

The way I'm supposed to sneak it in is while I'm getting her a cookie I repeat over and over "oo oo oo" "oo oo oo" as I slowly take my time getting it and giving it to her, hoping that she'll be inspired to imitate me. It may take a while before she starts imitating so I'm to be patient and not give up. Ms. T. continues to insist that drilling over and over and over is the way McKenna will learn to speak.

McKenna continues to have lots of problems with her vowels. She seems to be progressing much faster with her consanants even though that's not our focus. She has all by herself started really working on finishing her words this past week. However if her vowels remain all mixed up the way they are she will continue to have big problems with inteligibilty and this is with a one word utterance in mind. EVERYTHING falls apart when she attempts two words together.

McKenna *IS* improving and I do see it, but it all still seems overwhelming and a very slow road.

One day at a time is a very good motto. I'm doing really well for the most part living that way with her.

Thanks for praying!

Love,
Amber

A Glimpse!

I've decided I'll update McKenna's blog at least once a week, probably on Wednesdays after her therapy session.

Today's therapy went really well!!! She focused and worked hard for the whole hour and was making headway. She said 2 new words today:

"hands" (Ms. T. said she was close enough on this one. It sounded like "hents")
"bubble" (this was perfect!)

There might have been another one, but I can't remember. Ms. T. took an inventory of her vowel sounds today. There are 12 vowel sounds in the English language. 7 of them McKenna either could not do at all or had a really hard time with. We are supposed to focus really hard on vowels right now because once she gets those straight it will increase her intelligibility greatly.

I continue to be so impressed with Ms. T. She is so good with McKenna. She is totally in control, patient and seems to have a good balance of pushing and compromising.

McKenna just attacked every thing today with energy and excitement and she had a good sense of humor. My mom watched the session today and there was a couple of times she and I couldn't help but laugh at something and McKenna didn't get embarrassed or clam up- instead she gave us a good natured grin and laughed with us. That was really great for me to see.

I actually teared up at one point- when she was saying "hands" because I was so excited and relieved at how she was doing today. Last week's session was a bit discouraging.

All week long, leading up today I've noticed that McKenna has really been making a lot of good attempts at speech. You have to be a very experienced listener to catch it, but her attempts are more direct and organized. Like she's starting to understand how to work on it. I feel like she went into this weeks session with more security and confidence too. It may also be that by the 3rd time now she knows what to expect and what this time is about.

Since she's smart enough to know she's not talking right, I've really wanted her attitude about therapy to be one of excitement that this is *for* her, to help her. And I've wanted her to feel success so she has hope that it will work for her. I really think that's what happened today. And I'm relieved to the point of happy tears. I think it's going to be so magical for her to be able to communicate. I now have a glimpse of how her world will open up!

The nature of Dyspraxia is that things often take one step forward and then two steps back. I'm not getting ahead of myself. We still have a massive amount of work to do. These little things I was excited about today would be miniscule to someone who didn't know where she was coming from. She still can't really speak in sentences- even two words together or even a lot of single words and be understood. Over 1/2 of vowel sounds she really struggles with. But today I caught a glimpse of how this is working for her and I'm going to cling to that!

Thank you for your support and prayers!

Love,
Amber