Life is full of mountains, sometimes we're at the bottom looking up and sometimes we're at the top looking down while admiring our victories.....today we're at the top!! And I'm gonna celebrate!
Zoya had her best day ever at school last week! She sat in her chair for snack AND she sat for circle time on the carpet and wanted to help with calendar! Her teacher told her that this week she can be the calendar helper. She also asked her teacher to take her potty when the teacher had forgotten to take her! They go potty at 10:00 and then again at noon I believe. Zoya gets taken one time in between there usually. Her teacher told me that she had forgotten to take her and at about 11:15 Zoya signed "potty" to her :) No tears at all...the drop off was great for the most part...she was a little clingy but separated much better than in the past. And Zoya didn't want to leave when I came to pick her up.....she was so excited to see me and looked surprised when she looked up and I was standing at the door....she ran over to hug me and then went back to play. I had to bribe her with Elmo (which she earned anyways for a good day) to get her to leave!
Potty Training.....well Zoya seems to be potty trained...I am scared to type that though. For 3 weeks she has been dry! The past couple of days she has been in big girl underwear and stayed dry! We went for our first car ride without a pull up and she passed the test! She is able to hold it much longer in between and asks us to take her potty frequently throughout the day! She stayed dry for our two hour drive to visit family and the two hour drive back! Yesterday she even did #2 on the potty!!! She ran in while I was going potty and sat Elmo down on the seat next to me and said "poop." I said "HUH?" And she said MEEEE. I put her on and what do ya know.....big girl went!! Shawn came running down the stairs when he heard me screaming LOL. We had a Poop Party! I'm not holding my breath that this will happen again anytime soon, but a mama can dream right??
And speech....wow she is talking so much more. This therapy in Buffalo is really helping her. She has been saying "me do" and "me go" about a million times a day. Today I worked a lot with her on saying "I do" instead and she's got it down! She also said "I want more" (sounds like I wwaaahhh moooore-think New Jersey accent) to ask for more "makeup." When I put my makeup on in the morning, Zoya always asks for some and I run the brush over her nose...she loves it. So today when she said that I almost fell over! I said, "You want more???" And she smiled real big and said "YAH." I'm so proud of how hard she is trying. We've worked a lot on the word "up." Zoya says "uppa" because she always drops her jaw at the end. The PROMPT therapist showed me how to hold her jaw closed at the end of "up" and Zoya is now prompting herself to do it! It is pretty cute. We still have a LONG way to go but I'm excited to see such noticeable progress for the first time.
Zoya has really been changing before our eyes...I wonder if that has anything to do with the recent increased difficulty sleeping and separating....just so many changes going on in her little self! At any rate, I'm celebrating the view from the top of the mountain and enjoying it even more knowing I'll have days where I'll be at the bottom needing to remember how great it feels to climb back up to the top!
Pictures coming soon, I promise :)
Showing posts with label PROMPT. Show all posts
Showing posts with label PROMPT. Show all posts
Monday, August 1, 2011
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 http://www.asha.org/public/speech/disorders/childhoodapraxia.htm:
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 with....so 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 services.....how 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.
Here is a definition of apraxia taken from http://www.asha.org/public/speech/disorders/childhoodapraxia.htm:
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 with....so 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 services.....how 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.
Subscribe to:
Posts (Atom)