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