"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