Wednesday, June 29, 2011

Speech and Apraxia

Oh.....speech.....sigh. It's SO hard for Zoya. Currently, Zoya receives outpatient speech therapy at the local hospital once a week for 30 minutes. Before she turned 3, she got speech for an hour every other week at home.  With it being summer, she is only receiving minimal therapy through school.  She can say 10-15 words, although they don't always come out the same way....she has lots more approximations, but overall, her speech skills just aren't really close to her other skills developmentally. About six months ago I started wondering about APRAXIA, which is a motor planning disorder that makes speech pretty difficult. Just recently children with Down Syndrome have been getting diagnosed with apraxia more and more. The old theory was that kids with DS couldn't also have apraxia, but more recent research shows that is not true. Apraxia is also referred to as childhood apraxia of speech, verbal dyspraxia, or oral apraxia.

Here is a definition of apraxia taken from
Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.

Zoya is a tough cookie to figure out. She shows some signs/symptoms of apraxia but other things she shouldn't be able to do with apraxia, she can. All cases of apraxia present a little different so it's not exactly easy to figure out in some kids. Zoya's inconsistency in words/sounds is a big concern as well as losing words after she has learned to say them. For an example of inconsistency...the word "baby." Sometimes it comes out sounding exactly like "baby," other times she will just say "ba" or "baba." Vowels are very difficult for Zoya. She will learn one vowel, like long o, and then learn long e and no longer be able to say long o. She can imitate many isolated consonant sounds, but gets all mixed up when trying to produce more than one syllable. She also cannot mimic movement of her tongue like she should be able to. If I say stick your tongue out, she can do that, but she cannot move it up or down or side to side on command. It's just kinda there wiggling around, trying its hardest LOL.

So no therapists, until today, have been able to answer this question: "Is Zoya's speech developing sequentially like it should be, just delayed?" Kids with DS meet milestones, typically they just meet them later than children without developmental delays. This would be true for speech as well, and I hear the magic number for speech to really start taking off for kids with DS is around 4 years old. So, since Zoya is only 3, most therapists have had the "wait and see" approach....just saying, "she'll get it, let's just wait and see..." meanwhile just doing the same play therapy over and over. The play therapy has been great for Zoya's language skills, but has not done a whole lot for speech skills. I don't really like anything about the "wait and see approach" since she already waited the first 22 months of her life with no therapy. I've been pretty frustrated with speech therapy to say the least....up until today.

Today we drove to Buffalo, an hour and 45 minute drive, to meet with a couple therapists who are trained in the PROMPT speech technique. For the first time I felt lots of hope for Zoya's speech progress. These ladies are amazing and so knowledgeable about speech in general, and specifically apraxia. They are highly trained and LOVE what they do. They are in it to HELP kids and want to see progress just as much as I do. It is not JUST a job for them. I could tell that even before I met them, just talking on the phone to them. One of the therapists has a son who was diagnosed with apraxia and the other therapist was her son's therapist so they make a great team. They do all the evaluations together and then we will work with just one of them for therapy. They were shocked to hear that during the school year Zoya will only get speech therapy once a week for 30 minutes....and that is not all one-on-one either. They both work in early intervention through preschool age and said if we lived there Zoya would definitely get speech therapy through the school THREE to FIVE times a week! I said, "Well I guess that's why we are here." And they said, "Well I guess that's why out state is bankrupt and yours isn't." HAHAH.

They pretty positively told me that Zoya's speech is NOT following a typical development pattern that you would see in most children with DS. They saw many signs of a motor planning disorder such as apraxia. They were impressed with her jaw strength and muscle tone so we do have that going for us! There were lots of things she could do that they were very impressed it wasn't all bad news.  Although I could care less about whether or not she is diagnosed with apraxia, I DO care about the techniques that should be used with her based on the fact that she is likely apraxic. Traditional play therapy techniques do not help apraxia. Zoya tolerated the PROMPT technique very well and I have high hopes it will help her learn to speak. They don't solely do the PROMPT technique, they have some other tricks up their sleeves, but their overall approach REALLY impressed me!  She may never speak in full sentences (or she may) but she can definitely learn some functional language to communicate her way through life. When they said there is a motor planning disorder, I had a brief moment of sadness and got a lump in my throat and wanted to cry, but I got over it quickly and was almost relieved to hear someone say what I already knew. Mamas should always trust their instincts. So now that we've got an idea of the problem and a way to help it, I feel a lot better. The only problem is that it will not be fun driving an hour and 45 minutes one way once a week. It is also private therapy and out of state so that means insurance won't cover it. So I told Shawn he needs to sell more drugs (no worries, he is a pharmacist, so he legally sells them!).

I'd love to hear from other DS Mama's about what their kiddos receive as far as speech many hours/sessions per week and any specific techniques used? What has been helpful for your children in the speech department? Other Apraxia/DS Mamas out there? My next topic of research that I'm just starting to dive into is Augmentative and Assistive Communication Devices to help be her voice in the meantime.

Saturday, June 25, 2011

More Beach Pictures!

Getting ready for the beach and Zoya got a little nutty!

footprints dissapearing in time....

Oh I thought sand would taste better than this!

This is pretty gross!

Why didn't someone tell me not to eat the sand? Oh what? You DID tell me?? Hmmm I must not have heard you.
Oh how I wish I could be right there right now!

Thursday, June 23, 2011

Great First Day!

Zoya's teacher reported that she had a great first day! She said she tried to hug and kiss everyone all morning long...funny part is there were no other girls in her class today...just boys!! She really liked one little boy in particular, probably because he was the only one smaller than her and she loves people who are smaller than her! HA. When I walked into the classroom to pick her up she got a real big smile like HEY I KNOW YOU! And she ran over to me and hugged me! Sweet girl. I also got a call from Zoya's speech therapist who visited her in the classroom today and she said Zoya did fantastic! She said Zoya followed directions and listened well! Zoya's teacher said Zoya did a nice job following directions even though she was saying "no" while doing what was asked of her! She does that all the time, says no but then does what she is asked anyways...stinker. Her ST also said she already seems attached to her teacher because when the teacher had to step out of the room for a moment Zoya ran to the window and watched for her and seemed sad.  Apparently she had some trouble sitting on the carpet and would rather socialize with her new boyfriend than sit in her spot! She also decided sitting at the snack table was for the birds and would only stand. This goes back to her fear of chairs I always talk about...who knows with this girl. Either way I'm way proud of her doing such a good job on her first day of school! When I picked her up I said were you a good girl? And she said "goo goo yah." Then I said did you keep your hands to yourself? And she got real big eyes and didn't say anything...she always busts herself!

Here is a cute video I took after school while Zoya was eating lunch today. I'm pretty sure she's already learned something after her first to take a big drink and then say AHHHHH. The first time she did it I cracked up because I'd never seen her do that before. I asked her if the kids at school did that and she said "yah!" I didn't think to pick up my camera until after most of our conversation was over lol.

Zoya's First (unofficial) Day of Preschool

Okay so dropping her off was maybe the hardest thing I've EVER done...I'm talking harder than our entire adoption process (okay so maybe I'm being dramatic but I do feel like I left a piece of my heart in that preschool room this morning). Zoya did fabulous. She woke up and I told her she was going to school! She clapped and patted her chest and said "Zoya" (more like row-row these days lol), then signed "school" and then signed "home." If you're a Signing Time fan like us and you've seen the "School" episode they always sing a song about going home at the end so I was thrilled to know in my heart she knew she'd be coming back home and I wouldn't be leaving her there forever. Since this is the first time that we've left her somewhere else, I worry that she will be scared and wonder why I left. Hopefully she understands she will be coming home...I think she does. Her teacher's name is Miss Anna and Zoya signed "banana" every time I told her she was going to see miss Anna.  I guess Zoya has already made up a sign for her teacher haha.

Anyways, I put her backpack on (which only had her happy pillow-just in case-a change of clothes, a few pull-ups, and her snack) and she just about fell over it was so heavy for her! LOL. I was shaking as I pulled out of the driveway and kept thinking "Is it too late to un-sign-her-up for preschool???" We got to the school and Zoya squealed with excitement...she has been to school many times to visit me and a couple times for preschool visits-and she loves it there. She walked into her classroom all by herself like a big girl while I snuck some photos and tried not to cry. I walked in with her gave her a hug and kiss and reminded her to be a good girl so she can watch Elmo. There were 4 boys playing already and she joined right in. I stepped out to sign her in and she followed me out. Her teacher told her to say goodbye to mama. She said bye and waved, blew a kiss, walked into the classroom and closed the door behind her! I'd say she was ready!!

Tears welled up in my eyes as I walked away. I tried to hold it together until I got out of the building and was mostly successful with the exception of one little tear that just couldn't wait. I called Shawn when I got in the car and cried :( I cried the whole 2 minute drive home and I'm still crying now!  What is wrong with me???Looking back from when we brought Zoya home, she is a different child. She has overcome so much. She is so strong and brave to have been through all she has and still have such a love for life. So being able to get to this point is a huge milestone for her. From belly crawling and being ignored in the orphanage to walking proudly all by herself into a preschool classroom where she will learn and make friends....well it just seems impossible to have come this far in such a short amount of time!

And can it seriously only be 9:37?? I feel like I dropped her off hours ago! Watching the clock until noon!  I hope she is doing okay!!

It is very strange sitting here in this quiet house all alone. I haven't been alone in this house for over 10 minutes since Zoya came home! What in the world did I do with all my time before Zoya???? I guess I will go vacuum...2 hours and 16 minutes until pick up!!!

Wednesday, June 22, 2011

Sassy 'tude

Tomorrow's the big day! OH MY. Zoya did great with her preschool visit this morning and I hope she is ready for tomorrow! I hope she doesn't pull her sassy card on the first day! What? You don't believe this girl is sassy? Here is what happened at the doctor's office the other day:

Me: Zoya you need to go potty before we leave.

Zoya: NO!

Me: You don't tell your mama No or you sit in time out, now go.

Zoya: (Glaring at me not saying No but not moving either)

Me: Zoya you need to start walking NOW. If you don't go you will sit in time out. ONE.

Zoya: TWO!

Me: You can count but when I get to THREE you sit in time out, now MARCH.

Zoya: (Marches in place with raised eyebrows).

Me: That's TWO!

Zoya: (rolls her eyes while walking to the bathroom).

And here is what happened after speech today as Zoya and her therapist came walking out to meet me:

Therapist to Zoya: "Are YOU going to tell her or am I?"

Zoya: (quiet) then yells and signs, "Goo goo" (good girl)

Therapist: TRY AGAIN.

Me: UH OH :(

Zoya lost her Elmo privileges for the night and was pretty sad about that LOL. What a stinker!

I'll be sure to report how tomorrow goes! Say a prayer (for me). HAHA.

Tuesday, June 21, 2011

Swimming Lessons and Life Lessons

So the other reason I've been freaking out is called "organized group activities." Oh I HATE it! LOL. I signed Zoya up for swimming lessons for 3-5 year olds twice a week this summer. Zoya loves swimming WITH ME. After I signed her up I read more and it said "non-floaters, parents do not participate, no flotation devices" (insert record scratch here) Uhhh something about that makes me nervous!!!! 

Any new experience usually brings a little anxiety for Zoya and even if its something she's done before in a different setting sometimes she can freak herself out and not even want to try. So I'm glad to report that swimming lessons weren't a complete failure tonight! She participated with the group a bit and one of the teachers was really good with her and gave her lots of one-on-one attention. I love how Zoya watches other kids and wants to mimic them (I realize this is both good and bad haha). Even though she was hesitant about swimming lessons she watched all the other kids and tried her hardest to do what they were doing. She wanted to participate because all the other kids were. Now I do have to mention she only cried once (which was better than what I had pictured) and almost pushed another little girl into the pool after hitting her a few times and swiping her sunglasses off her face. But my friend says "no harm, no foul." LOL.

We are working on the hitting/pushing thing as Zoya has seemed to enjoy hitting/pushing other kids lately.  Not hard but not gentle either! She just can't seem to keep her hands to herself! So we've been saying "no touching just say hi." And lots of times she is just saying hi, but you can clearly see she'd rather go and squeeze the daylights out of the kid with a big hug ending in a push! It's like she tries hard not to but then can't help herself.  I think part of the reason for hitting is because she just doesn't know how else to initiate play since she can't really verbally communicate. And another reason is she is just very impulsive.  I don't think it's really a sensory thing as she doesn't hit us or any other adults...mostly people her size and smaller. (Although now that I think of it she did push an old lady in Walmart...oops). Anyways...any other mama's with advice to stop the pushing? We do time out every time she pushes but it's not exactly stopping the problem! Hopefully it's a stage and she won't be 16 still pushing people.

Back to the swimming...I made sure to tell her how proud of her I was and she did have a smile of accomplishment (after she got done crying because she didn't want to leave the pool LOL). I've always been the kind of person who avoids situations that might end in failure. I'm afraid of failure...who isn't? But me? I avoid it at all costs.  (Something I don't necessarily like about myself).  So I sometimes project that onto Zoya in fear that she will fail and avoid situations that might not turn out with Zoya succeeding. I don't want to see my kid fail even more than I don't want to see myself fail...but it's part of life and learning and growing. So I begrudgingly signed Zoya up for swimming knowing we BOTH needed it. 

My goal for Zoya in swim lessons is NOT to learn how to swim. Weird, I know. My goal is for her to try something new and not be so afraid. My goal is for her to listen to directions from someone other than Shawn and I. My goal for her is to take pride in the accomplishments she makes. My goal for her is to make a friend or two.  Somewhere along the way I've realized I need some goals for myself in respect to Zoya. When you have a child who takes a little longer to meet milestones and accomplish what seem like easy tasks for other kids, you learn a lot about pride. There are many things my kid will never be the best at--but there are a ton of things she is already the best figuring out what's important in life. One of my goals for me is to not compare her to anyone else...which is very hard. I like to compare things in life to have a baseline, but Zoya has her own baseline and it's not fair to compare her to other three year olds-typical or with DS.  She is who she is and she will do what she will do in her own time in her own way.  I am so proud of her but sometimes I get into the comparing game and then I start feeling negative or stressed about all the accomplishments yet to be made.  One of my other goals for me is to give Zoya the benefit of the doubt more and give her more chances to make mistakes and be okay with that...if I'm always trying be the buffer between her and any potential problems, I'm taking away an opportunity for her to learn. If I don't have 100% confidence that my kid can be successful, then who else will? And I have just one small goal for the rest of the see Zoya for all that she can do instead of all that she can't do! (Just a little goal there).

So as I sat (okay so I nervously walked around the pool) and watched hard as it was to step back and let her just do her thing-failures as well as successes--I took so much pride in watching her try new things. It was hard when she cried because she didn't want to participate when it was her turn, but the tears only gave me a bigger sense of success when she DID participate for the rest of the class.  I was thrilled to watch her want to get in line with the other kids and try to jump into the pool like them even though she has no idea how to jump. Other parents on the outside may have seen our evening as a failure but in my book it was a beautiful success.  It's all about perspective.  Miss Zoya has taught me to see from a brand-spanking new pair of glasses and it's a beautiful world through those lenses! I wish I could pass the glasses around to others so they could see what we see. In time those who have the chance to get to know Zoya will earn their very own pair of special glasses too and they will be forever changed because of her.

Freaking Out!

Okay I know I have a million more adorable vacation pictures to post but I need to cry for a minute.  Zoya starts PRESCHOOL Thursday....yah like in 2 days...well less than two days since it's already Tuesday at 2:30. Waaaahhhhh! Even though it's not "really" "officially" preschool, I'm still freaking out a little. We decided to send Zoya one morning a week throughout the summer to get her familiar with the idea of preschool. She will have the same teacher and classroom aide this summer as she will when she officially starts in the fall which will make it really nice for her!  This way they can get to know each other and work out any kinks before preschool really starts.  The summer program is a little more laid back and hopefully it will just be a great opportunity for Zoya to work on some social skills with some great peer models! But I'm just saying I might hide outside the window or pretend to be working in my classroom across the hall...haha, kidding I would never do that...I'd at least leave the building and check back in every 15 minutes or not really, I mean come on I'm sooo not a helicopter parent, am I? Oh dear. Give me a break here, I have NEVER dropped her off somewhere and just left her with people who don't know her very well yet (ok so I did that twice at church and we all know how that went...although that wasn't Zoya's fault and the teacher she will be with would never act like Zoya is a burden). Shawn asked me how I will occupy myself from 9-12 Thursday morning so I don't sit here crying stressing about how Zoya is doing...he knows me too well! So I decided I am going to put a nanny cam in her classroom and just watch her morning over the internet....okay TOTALLY kidding there...I have no idea what I will do....probably sit in my car outside the school for 3 hours? No, really I'm joking sort-of.

HELP! Tell me everything will be okay!!! She will be fine, it's ME I worry about :)

Monday, June 20, 2011

Beautiful Blues

Zoya's First Time in the Ocean!

(my new all-time favorite picture!)

Zoya was mesmerized by the ocean. She loved watching the waves and waiting for them to crash into her! There is just something about the ocean that makes everything in the world right. There's something about the soft sand under your feet allowing you to sink deeper and deeper as each wave crashes over your feet.  There's something about listening to the rhythmic splash and crash and hum of the waves.  It is a beautiful, peaceful place. I stook there with Zoya watching the water meet the sand and praising God for all of His beautiful creations. As I watched Zoya experience the ocean for the first time I felt as if I were seeing it for the first time as well. Seeing old things through Zoya's new beatufiul baby blue eyes makes this life way more exciting!