Thursday, October 29, 2009

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

Thursday, October 22, 2009

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

Wednesday, October 14, 2009

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

Wednesday, October 7, 2009

Shut Down

Today's speech therapy session for McKenna started out great. She was interested in the toys and games she was working hard and making lots of attempts at speech. And then about 30 minutes in to the hour long session she pretty much just suddenly completely shut down. She just sat there staring off into space and acting like she had no energy or inclination to try to speak, sign or even play. Ms. T. her SLP (Speech Language Pathologist) didn't push her, she backed off and just sat and waited. She never really did snap out of it though for the rest of the hour we could hardly get her to participate. Then after Ms. T. left she just sat in my lap with her head on my shoulder.

I'm not sure what was going on.? If she suddenly got self conscious or discouraged or if she just used up all of her energy and was completely on empty..? I felt bad for her though.

Ms. T. feels McKenna is doing well. She said McKenna is very young at only 27 months and that an hour long session is going to be a challenge for a while. That makes sense to me. We talked about not pushing her too hard. We will all need to learn to read McKenna's signals on that. We also need to make sure we often ask McKenna to say things we know she can say and then really praise her for it so she feels success.

Right now I'm supposed to really focus on vowels. Isolate the main vowel sound in the word and try to have her repeat it. She can do that maybe 60 or 70 percent of the time with 1 word. But when we try to take the vowel sound out of two words and ask her to put them together- that is REALLY hard for her. She rarely succeeds at that. For instance for "right now" I would ask her to say, "i ow". She can say "i" she can say "ow", but when she tries to say them together it either all falls apart or she doesn't even really make a sound (attempt). She just sits there and looks like there is a struggle going on.

I expressed to Ms. T. my overwhelmed feeling after last week and she was very sweet and caring. She encouraged me by saying even with dyspraxia there is often a "click". Meaning once we start getting McKenna on the right path there may/hopefully be a time when things start to click and she doesn't have to struggle every single step of the way. I really hope she's right about that. Because otherwise we have a very very long road ahead of us. I am attempting to take this one day at a time. When I do that I'm good.

Thank you for saying prayers for McKenna's brain and mouth and everything in between. (-:

Love,
Amber

P.S. Thank you Nyree for sharing about your son Paskale- continued blessings in your journey with him. Also thanks to everyone else who commented with support and prayers in my last two posts!

Thursday, October 1, 2009

Dyspraxia? Say What?

So Verbal Dyspraxia or Apraxia means that McKenna's brain doesn't work quite right. It could have been congenital (formed that way in the womb) or it could have been damaged somehow.

I don't think there is any way to know for sure. I think that it could have happened during her surgery at 6 months old. I don't have any big reason, I just *feel* that way. I do have video of her a few months before her surgery at 4 months old or so, blowing raspberries and making noise (vocalizations). Although even before her surgery she was rather quiet and had a funny deep laugh that we didn't hear very often. My son started laughing late and was very stingy with them for a while, but he quickly broke out and began laughing all the time. McKenna never did that.

Right after her surgery she moaned a lot, but didn't really cry much. That night she was hooked up to monitors and there seemed to be wires everywhere. I remember she had a reaction to the pain medication (or so I've assumed) they gave her in her i.v. She started going crazy moving all over the place. She was up on her hands and knees rocking and just rolling and scooting all over the crib rather spastically, but very quietly. She kept this up for like two hours even though she was clearly exhausted and had just had surgery under her arm. It kind of unnerved me. I didn't let them give her any more of that medication after that. It occurs to me as I write this I should probably get her records and see if I can figure out what they gave her.

The fact that she was born with the congenital malformation of her lymph tissue would seem to put a strike in the congenital category for her Dyspraxia too though. Dave tends to feel she was born this way. Hmmmm . . .

Anyway none of that really matters because "it is what it is" whatever it may be.

The problem with her brain is in the motor planning/programming area. From the Apraxia Kids website: "For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.

In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.
"

McKenna understands speech extremely well. She scored high on her receptive speech. Everyone that has looked at her or worked with her has commented how very smart she is. She also scored very high on the social/emotional aspect of her evaluation which helps to rule out other things such as Aspergers or Autism.

I am of course happy that she seems to be developing normally and even ahead in all other areas. It is however as McKenna's speech therapist put it, "a blessing and a curse". A "curse" in the sense that McKenna is very sensitive and even self conscious sometimes about her speech. This sometimes causes her to completely clam up or refuse to try. Cole loves his sister so much. There is nothing that Cole likes to do more than laugh. That boy just loves a good laugh. Unfortunately McKenna's speech is pretty darn funny sometimes and Cole just gets so tickled. I have to admit so have I. We have noticed however that McKenna is very sensitive and embarrassed by this.

When Ms T (her therapist) noticed this she agreed that we should try not to laugh, but she also said, "this little girl is going to have to toughen up though." She reiterated what we have been told that it is going to take a few years to get McKenna speaking normally and that she will have to deal with the social ramifications of that.

McKenna's first therapy session was Wednesday and I was in a bit of shock afterwards. It took me all day to process it and deal with my thoughts and emotions. The whole thing was much more intense than I expected. Ms T is amazing! I really like her, however I wanted to punch her quite a few times. 0-: She was so hard on McKenna. She brought toys and played with McKenna the whole hour, but she made her work SO HARD for absolutely everything. McKenna had to say or sign something at every single step, from opening her toy bag to taking turns with Cole to learning how to play with new toys. I was chastised many times for "knowing" what McKenna wants and needs and acting on it without making her speak for it. I had no clue I was doing this so much.

McKenna cried many times during this hour. I realized that I jump at McKenna's every need and can practically read her mind sometimes. I do this so she wont cry and be frustrated. Apparently that is not what I "should" be doing for my daughter. After the session was over McKenna was completely exhausted! She was literally just laying on the hard floor limp.

The enormity of the whole thing hit me. Absolutely everything about acquiring speech we take for granted and with McKenna we can take NOTHING for granted. Everything has to be worked and rehearsed over and over and over. I cried on my way to work. I cried that she'll have to work so hard for something that should just come easily. I cried that she'll have to struggle to talk to her brother and her friends. I cried that she already knows she'd different and it concerns and confuses her.

But I also was relieved and excited.

I'm excited because McKenna worked so hard was so determined and did so well! She is already making progress. We were all so impressed with her work ethic. That girl does not give up. She tries tries tries and tries again. I have always known that McKenna is very strong and feisty. Those attributes will serve her very well.

Love,
Amber