So, *drum roll please* I have finally finished the book about our journey with apraxia of speech!
I hope to have it published this year. It will be available on Amazon, Kindle and more for 9.99$ electronically, and a paper copy for more than 10$, not exactly sure the price on the paper copy yet..
Sorry I haven't been posting as much here. You can follow the book on instagram too @thegracemethodthebook
Friday, August 17, 2018
Monday, July 22, 2013
Martin Luther King Jr. Article
When my son Liam was diagnosed with apraxia of speech at age 3, his Dad was less than one month into a year long deployment to Afghanistan. The news was crushing. Suddenly, the possibility that our first born child would never speak, was our reality. Co parenting was impossible as our communication was cut off with Dad at war-- it was all up to me.
The first thing I did was quit sleeping. I stayed up reading, researching and networking online with other parents who had walked the same path. I read every book in existence on apraxia.
As I broadened my awareness, I began to understand two different paths parents were choosing to take. The more commonly travelled was using a device like Stephen Hawking to speak. The child would spend hundreds of hours learning how to use the device, and have the machine speak in a robot like voice. The road less travelled was sign language. Interestingly enough, I had been learning sign language since I myself was just seven years old. And, I just so happened to be at the point in my college career when I could not move forward until I selected a second language to study. The choice was obvious to me. Mother's intuition was buzzing. I signed up for ASL 1 and started informing the professionals around my son that we would be traveling the road less travelled, ASL. We ordered every episode of Signing Time on DVD and got to work! My research had helped me to understand that the neural pathways in the brain of the apraxic child were likely damaged. I also understood that the neural pathways where ge`stural language (signed languages) travelled was a different area in the brain altogether. So I had a hypothesis, that if we could teach my son ASL, he would first, have a full language ability to express himself. And secondly, we could use ASL as a bridge to verbal communication. Would it be possible to reroute his verbal communication through gestural language pathways by pairing speech with sign? We had to find out. So, we immersed ourselves in Deaf culture and were accepted fully into the Deaf community through our passion for the language. The most priceless gift my son and I have received to date in this world, is the love and acceptance we received from the Deaf Community in a time of great vulnerability.
We were blessed to live in New York State at this time, the state leads the nation in special education spending. My research had made me pain fully aware of the funding struggles special ed kids face. To succeed, my son needed to have special ed preshool year round, occupational therapy, speech therapy, physical therapy everyday and a one on one aide who was also an ASL interpreter. This all meant big bucks for the district, and it took a bit of advocacy and time, but we got it done. Now my son could start the work of learning day by day how to communicate. The one on one aide who was also an ASL interpreter was the key to my sons learning to speak. I developed a good relationship with her and she was present with my son in his therapy sessions so that she could carry over therapy. Together we developed a unique and individualized method of teaching Liam to speak through the power of American Sign Language.
Liam was almost 5 years old now, and still not speaking. Home for spring break, he was given a homework packet that he was very engaged in, about Martin Luther King, Jr. Liam had already expressed in ASL a very special liking to MLK. Knowing this, I chose to write my History term paper on MLK, inspired by Liam. Day by day I shared with him all sorts of interesting facts about the King. This day I had finished my paper and I sat with Liam and read to him what I had written and asked him if he liked it. He did. Happy, Liam showed me his coloring pages in his homework packet. We started looking in particular at one picture of Martin Luther King at Washington monument. I asked Liam questions about his work, and to the greatest joy of my life, Liam responded in speech for the first time. I said, "Liam where is this?" Liam: "Waa Eee Tuh Mo uu Meht" To say... Washington Monument. This was the most enunciated utterance of Liam's life- and the meaning was 100% clear. Then I asked him who is that there at Washington Monument and he replied in his way "King Jr" I was now officially the happiest Mom on Planet Earth. I knew that my son knew the power to communicate. And was working so hard to have his voice heard. And he would succeed. A few short months later, in planning our route of our move from New York to Texas, I insisted to go the long route across the states, through Washington DC. There, I stood in silence with my beautiful son at the Washington Monument, in gratitude for another great gift the King had bestowed upon my life.
Anne Devlin is a mother, writer, photographer, advocate and founder of www.deaflitproject.org. An aspiring adoptive mother and humanitarian- she lives with her two sons in Eugene, Oregon in community.
Liam is now 10 years old and proudly working on his third language after ASL and English, the Japanese!
The first thing I did was quit sleeping. I stayed up reading, researching and networking online with other parents who had walked the same path. I read every book in existence on apraxia.
As I broadened my awareness, I began to understand two different paths parents were choosing to take. The more commonly travelled was using a device like Stephen Hawking to speak. The child would spend hundreds of hours learning how to use the device, and have the machine speak in a robot like voice. The road less travelled was sign language. Interestingly enough, I had been learning sign language since I myself was just seven years old. And, I just so happened to be at the point in my college career when I could not move forward until I selected a second language to study. The choice was obvious to me. Mother's intuition was buzzing. I signed up for ASL 1 and started informing the professionals around my son that we would be traveling the road less travelled, ASL. We ordered every episode of Signing Time on DVD and got to work! My research had helped me to understand that the neural pathways in the brain of the apraxic child were likely damaged. I also understood that the neural pathways where ge`stural language (signed languages) travelled was a different area in the brain altogether. So I had a hypothesis, that if we could teach my son ASL, he would first, have a full language ability to express himself. And secondly, we could use ASL as a bridge to verbal communication. Would it be possible to reroute his verbal communication through gestural language pathways by pairing speech with sign? We had to find out. So, we immersed ourselves in Deaf culture and were accepted fully into the Deaf community through our passion for the language. The most priceless gift my son and I have received to date in this world, is the love and acceptance we received from the Deaf Community in a time of great vulnerability.
We were blessed to live in New York State at this time, the state leads the nation in special education spending. My research had made me pain fully aware of the funding struggles special ed kids face. To succeed, my son needed to have special ed preshool year round, occupational therapy, speech therapy, physical therapy everyday and a one on one aide who was also an ASL interpreter. This all meant big bucks for the district, and it took a bit of advocacy and time, but we got it done. Now my son could start the work of learning day by day how to communicate. The one on one aide who was also an ASL interpreter was the key to my sons learning to speak. I developed a good relationship with her and she was present with my son in his therapy sessions so that she could carry over therapy. Together we developed a unique and individualized method of teaching Liam to speak through the power of American Sign Language.
Liam was almost 5 years old now, and still not speaking. Home for spring break, he was given a homework packet that he was very engaged in, about Martin Luther King, Jr. Liam had already expressed in ASL a very special liking to MLK. Knowing this, I chose to write my History term paper on MLK, inspired by Liam. Day by day I shared with him all sorts of interesting facts about the King. This day I had finished my paper and I sat with Liam and read to him what I had written and asked him if he liked it. He did. Happy, Liam showed me his coloring pages in his homework packet. We started looking in particular at one picture of Martin Luther King at Washington monument. I asked Liam questions about his work, and to the greatest joy of my life, Liam responded in speech for the first time. I said, "Liam where is this?" Liam: "Waa Eee Tuh Mo uu Meht" To say... Washington Monument. This was the most enunciated utterance of Liam's life- and the meaning was 100% clear. Then I asked him who is that there at Washington Monument and he replied in his way "King Jr" I was now officially the happiest Mom on Planet Earth. I knew that my son knew the power to communicate. And was working so hard to have his voice heard. And he would succeed. A few short months later, in planning our route of our move from New York to Texas, I insisted to go the long route across the states, through Washington DC. There, I stood in silence with my beautiful son at the Washington Monument, in gratitude for another great gift the King had bestowed upon my life.
Anne Devlin is a mother, writer, photographer, advocate and founder of www.deaflitproject.org. An aspiring adoptive mother and humanitarian- she lives with her two sons in Eugene, Oregon in community.
Liam is now 10 years old and proudly working on his third language after ASL and English, the Japanese!
Wednesday, January 30, 2013
inspiri emerald park
Where the wild trees Are
the Wild trees are here
and there
and (readers choice word) everywhere!
sometimes they dance
or shake
or get naked
REJOICE and or BLOOM
I dont know every place where the wild trees are
but I do know
Where the Wild Trees are's
Where you'll find me
the Wild trees are here
and there
and (readers choice word) everywhere!
sometimes they dance
or shake
or get naked
REJOICE and or BLOOM
I dont know every place where the wild trees are
but I do know
Where the Wild Trees are's
Where you'll find me
Tuesday, August 7, 2012
Unstoppable
The Little Mute Boy
by Federico García Lorca
translated by W. S. Merwin
The little boy was looking for his voice.
(The king of the crickets had it.)
In a drop of water
the little boy was looking for his voice.
I do not want it for speaking with;
I will make a ring of it
so that he may wear my silence
on his little finger
In a drop of water
the little boy was looking for his voice.
(The captive voice, far away,
put on a cricket's clothes.)
This is the poem that inspired the name of my blog. Beautiful.
It is quite amazing and peaceful to look back at how far we have come.
I am happy to report, that very soon, my nine year old Liam will be starting to learn his 3rd language. Words cannot express how proud I am of you Liam. To be told you would never speak, and to be on your 3rd language by age 9. You. are. fearless.
and determined
and unstoppable
and magical
and and and .....
His language learning has gone like this..
American Sign Language 1st
Spoken English 2nd
Japanese 3rd!
You should hear him say Kunichiwa...! BEAUTIFUL!
Both my sons were blessed enough to get into this absolutely amazing Japanese Immersion Program-a FREE PUBLIC SCHOOL. Thank you, progressive Oregon! They will be in this program from now until 12th grade thankyouverymuch, because unfortunately due to an extremely nasty divorce, ugg, they have bounced around from school to school. It will be nice to put some roots down and I have to say, kudos to me for picking the community I did. Because it is FANTASTIC.
I will be posting soon on our upcoming experience with hippotherapy and an issue we have recently had with discrimination. And hey, maybe I will even throw in some pictures from our wonderful summer. So if anyone is reading this holler at me and remind me to meet my once a week goal! youwroteme@gmail.com
by Federico García Lorca
translated by W. S. Merwin
The little boy was looking for his voice.
(The king of the crickets had it.)
In a drop of water
the little boy was looking for his voice.
I do not want it for speaking with;
I will make a ring of it
so that he may wear my silence
on his little finger
In a drop of water
the little boy was looking for his voice.
(The captive voice, far away,
put on a cricket's clothes.)
This is the poem that inspired the name of my blog. Beautiful.
It is quite amazing and peaceful to look back at how far we have come.
I am happy to report, that very soon, my nine year old Liam will be starting to learn his 3rd language. Words cannot express how proud I am of you Liam. To be told you would never speak, and to be on your 3rd language by age 9. You. are. fearless.
and determined
and unstoppable
and magical
and and and .....
His language learning has gone like this..
American Sign Language 1st
Spoken English 2nd
Japanese 3rd!
You should hear him say Kunichiwa...! BEAUTIFUL!
Both my sons were blessed enough to get into this absolutely amazing Japanese Immersion Program-a FREE PUBLIC SCHOOL. Thank you, progressive Oregon! They will be in this program from now until 12th grade thankyouverymuch, because unfortunately due to an extremely nasty divorce, ugg, they have bounced around from school to school. It will be nice to put some roots down and I have to say, kudos to me for picking the community I did. Because it is FANTASTIC.
I will be posting soon on our upcoming experience with hippotherapy and an issue we have recently had with discrimination. And hey, maybe I will even throw in some pictures from our wonderful summer. So if anyone is reading this holler at me and remind me to meet my once a week goal! youwroteme@gmail.com
Wednesday, March 28, 2012
I learned to live in the moment...
A wonderful life lesson.
We just moved to Oregon.
Pictures... soon to come. Love.
if anyone is reading this.. and wants me to post more, I will.
We just moved to Oregon.
Pictures... soon to come. Love.
if anyone is reading this.. and wants me to post more, I will.
Wednesday, July 22, 2009
And we're back!
I have been neglecting this blog. Guess life got in the way. Happy to report, extatic to report: that my baby boy SPEAKS! It's pretty awesome, redefines awesome, actually. Looking over this old blog and especially the video, WOW! I need some time to collect my thoughts on the matter. Life has changed for us quite a lot. I'll update more later, for all of you three people following this blog.
Saturday, August 11, 2007
babies babies babies
We are babysitting our friends' baby Cooper while his parents go out for an anniversary date.
Liam enjoys playing with the baby. He sat down on the floor with Cooper and pointed to his feet and said "feet' then to his knees and said "knees". He went on like this and said "shoulders, belly, ears, eyes, nose, head," If I didn't hear him or couldn't understand him he came over to me and whispered it in my ear. Made me melt.
Liam is hands down, the sweetest little boy in the whole world. He is so gentle, not only with babies, but with everyone, he is so loving, and gives hugs and kisses to almost everyone he meets.
Liam also signed to me.. asking MOM, BABY?
"Oh you want mommy to have a baby?" "YESH!" Liam exclaimed. "Maybe in a few more years, Liam."
Having kids is being introduced to love, a new amazing kind of love, for the first time.
So many of my friends are having babies now, first babies. I have been thinking so much of how much their lives will change, in all the bad ways, and not thinking much of how their lives will change, in all the good ways. Now I am being reminded. All the sleepless nights, not being able to just take a shower, having to get a babysitter to go out with your spouse, suffering through embarassing public fits...(just to name a few of the downsides) it is all worth it, times a million.
Liam enjoys playing with the baby. He sat down on the floor with Cooper and pointed to his feet and said "feet' then to his knees and said "knees". He went on like this and said "shoulders, belly, ears, eyes, nose, head," If I didn't hear him or couldn't understand him he came over to me and whispered it in my ear. Made me melt.
Liam is hands down, the sweetest little boy in the whole world. He is so gentle, not only with babies, but with everyone, he is so loving, and gives hugs and kisses to almost everyone he meets.
Liam also signed to me.. asking MOM, BABY?
"Oh you want mommy to have a baby?" "YESH!" Liam exclaimed. "Maybe in a few more years, Liam."
Having kids is being introduced to love, a new amazing kind of love, for the first time.
So many of my friends are having babies now, first babies. I have been thinking so much of how much their lives will change, in all the bad ways, and not thinking much of how their lives will change, in all the good ways. Now I am being reminded. All the sleepless nights, not being able to just take a shower, having to get a babysitter to go out with your spouse, suffering through embarassing public fits...(just to name a few of the downsides) it is all worth it, times a million.
Friday, August 10, 2007
Some little things I want to remember..
This week as we were driving over to my friend Rachel's house to visit her new baby, Soren, Liam looked out over the edge of the Black River, through the trees on the street we live. He brought my attention to the setting sun. And signed SUN, GO HOME.
"Yes, Liam, the sun is going home." I said. Goodnight Sun, we said, me in my way, and Liam in his.
We got to Rachel and Soren's house. And oh yeah, Bert's house too. Well, we arrived at the family house and Liam just wanted to hold the baby first thing. And Rachel let him, just being Rachel, that's how she is. She's a good mom already I can see. Liam held the baby, and kissed his forehead. After a bit, Soren wanted Mom but Liam didn't want to give him up. He just wanted to hold that baby forever I think.
A while later we went outside. Liam begged to hold the baby again, so again he did. This time Soren didn't cry so Liam held him a good while. Liam gave Soren two soft kisses on his forehead. And one slobbery kiss on the forehead. Soren liked it though. I asked Liam, "What is this baby's name?" "Soren" he spoke. Rachel and I smiled.
Later on, in the house. Rachel commented to me. She said something like, 'It's amazing how creative he is with language. It is amazing how he uses the words he has to send his message, like how he said the sun is going home, instead of the sun is setting' We don't know the sign for setting, and he has never spoken the word 'setting'.
I agree with her. I want to remember everything he says. He is amazing.
"Yes, Liam, the sun is going home." I said. Goodnight Sun, we said, me in my way, and Liam in his.
We got to Rachel and Soren's house. And oh yeah, Bert's house too. Well, we arrived at the family house and Liam just wanted to hold the baby first thing. And Rachel let him, just being Rachel, that's how she is. She's a good mom already I can see. Liam held the baby, and kissed his forehead. After a bit, Soren wanted Mom but Liam didn't want to give him up. He just wanted to hold that baby forever I think.
A while later we went outside. Liam begged to hold the baby again, so again he did. This time Soren didn't cry so Liam held him a good while. Liam gave Soren two soft kisses on his forehead. And one slobbery kiss on the forehead. Soren liked it though. I asked Liam, "What is this baby's name?" "Soren" he spoke. Rachel and I smiled.
Later on, in the house. Rachel commented to me. She said something like, 'It's amazing how creative he is with language. It is amazing how he uses the words he has to send his message, like how he said the sun is going home, instead of the sun is setting' We don't know the sign for setting, and he has never spoken the word 'setting'.
I agree with her. I want to remember everything he says. He is amazing.
Thursday, July 26, 2007
First Video
I want to start making videos like this on a regular basis... to track Liam's progress. This video shows Liam's current skills. He was really tired so it underestimates him a little bit.. but actually this is SUCH an improvement, probably about 3 times better than what he could have done last Friday before we started the ProEFA and ProEPA.
Wednesday, July 25, 2007
Great news !!!
We just started Liam on ProEfa (2 daily) and ProEpa (1 daily). And OH. MY. GOD. IN. HEAVEN.
He is already showing huge gains of improvement. It is as if some enormous burden he was facing has been partially lifted. Some huge storm cloud is starting to move away..
Just in one afternoon he has said NEW words: quesadillas, helmet, present, money, rich.
More later !
He is already showing huge gains of improvement. It is as if some enormous burden he was facing has been partially lifted. Some huge storm cloud is starting to move away..
Just in one afternoon he has said NEW words: quesadillas, helmet, present, money, rich.
More later !
Monday, July 16, 2007
Lorenzo's Oil
I was watching the movie, Lorenzo's oil this weekend, for the first time. Wow. What an amazing (true!) story. Very inspiring, and at the same time, it really got me wondering what is the cause of apraxia of speech ? What is the cause for Liam ?
Internet research tells me there can be many different causes of apraxia, genetics, brain injury, cerebral palsy, genetic syndrome.. but what is the common thread? Scientists don't know. Some think that it may be a very specific and small injury to a specific part of the brain. This injury could be caused by many different things and accounts for the varying degree of severity, and the presence of other issues (being that a person could incur this specific apraxia brain injury as well as other brain injury in other places causing other problems.) Other theories are that due to some problem with myelin in the brain the impulses are not able to travel.
The movie Lorenzo's Oil was very interesting to me because the treatment they were able to develop was made of Essential Fatty Acids. Essential Fatty Acids can also be helpful for children with apraxia, though it isn't known why. It is very much a parent to parent word of mouth kind of thing, nothing like, a doctor giving a script for it. And the book The Late Talker discusses how EFAs can help apraxic kids. But it is all very mysterious.
Lorenzo suffers from Adrenoleukodystrophy a rare disorder involving the breakdown of myelin in the brain. Before Lorenzo's parents learned all they could, pressured the medical community and came up with their own (somewhat succesful!) therapy, little to nothing was known and being done about this disease. It was just too rare. The interesting thing too, is that apraxia is a symptom of adrenoleukodystrophy.
I wonder if one day there will be a definitive answer on the cause of apraxia. I wonder too... if I am doing all I can for Liam.
Internet research tells me there can be many different causes of apraxia, genetics, brain injury, cerebral palsy, genetic syndrome.. but what is the common thread? Scientists don't know. Some think that it may be a very specific and small injury to a specific part of the brain. This injury could be caused by many different things and accounts for the varying degree of severity, and the presence of other issues (being that a person could incur this specific apraxia brain injury as well as other brain injury in other places causing other problems.) Other theories are that due to some problem with myelin in the brain the impulses are not able to travel.
The movie Lorenzo's Oil was very interesting to me because the treatment they were able to develop was made of Essential Fatty Acids. Essential Fatty Acids can also be helpful for children with apraxia, though it isn't known why. It is very much a parent to parent word of mouth kind of thing, nothing like, a doctor giving a script for it. And the book The Late Talker discusses how EFAs can help apraxic kids. But it is all very mysterious.
Lorenzo suffers from Adrenoleukodystrophy a rare disorder involving the breakdown of myelin in the brain. Before Lorenzo's parents learned all they could, pressured the medical community and came up with their own (somewhat succesful!) therapy, little to nothing was known and being done about this disease. It was just too rare. The interesting thing too, is that apraxia is a symptom of adrenoleukodystrophy.
I wonder if one day there will be a definitive answer on the cause of apraxia. I wonder too... if I am doing all I can for Liam.
Thursday, July 12, 2007
everything is all fine !
All the tests came back normal - HOORAY ! So now we are finished with doctor's appointments for a good while. I get so warn out of it. Today I drove 3 hours (1.5 there and 1.5 hours back) and spent like 10 minutes or less with the Doc. He really rushed. I was a bit peeved. But oh well ! So now I am just supposed to take him to have allergies checked and that is it. Dentist too, I guess, but other than that we should be good for the next year ! The neurologist wants a follow up in a year but I don't think we will. He was awful today, so I will just have him only go to the developmental pediatrician, if he thinks he needs to go back to neurology then fine but I think the dev ped can mangage.
Wednesday, July 11, 2007
Sometimes the internet is not your friend...
... like when you get a report from the doctor telling you that your child should be evaluated for "Landau-Kleffner syndrome" (though he notes it is unlikely but should be ruled out). And then you start wondering what that syndrome is exactly, so you go wondering off into the world wide web and find out and it starts freaking the fucc out of you and making your stomach hurt.
UGG. I do this to myself all the time. I don't know why I can't just let it rest, let the doctors do their job, I always gotta go research and read read read, and etc etc & get myself all worked up about it beforehand.
So Liam has an appointment tomorrow at the Doctor about an hour away. We will be going to the airport beforehand to send off Grandma (as Liam says "Ma-Da") and Grandpa ("Pa-Pa"). He should be giving some of his famous hugs and kisses. We had a great visit with them.. more on that later.
The doc is the follow up with the neurology. So we will hopefully get the results of the EEG. I was totally fine with that and expecting nothing but now I am freakin myself out a bit. I know it would be better to save the freakin out for when it is really called for. I guess I am getting better with it, this time it isn't as bad as it has been in the past. But I really really dislike this feeling.
So some of these answers will be there tomorrow, and some more we will have to wait.
Liam just started with his sign interpretter at school and he is doing well. Though his teacher is really stricht and only tells the kids the intruction once, sometimes Liam doesn't understand the first time, and of course sometimes he doesn't listen.. so it will be intersting to see if Liam can learn how to follow directions the first time... I hope he can.
Well, I should get off of this world wide web and wait and do the researching until later, like maybe after the docs say, yes he has this. It would really be doing myself a big favor.
Sorry if this all doesn't make sense.. it makese sense to me.
Well, a lil'.
UGG. I do this to myself all the time. I don't know why I can't just let it rest, let the doctors do their job, I always gotta go research and read read read, and etc etc & get myself all worked up about it beforehand.
So Liam has an appointment tomorrow at the Doctor about an hour away. We will be going to the airport beforehand to send off Grandma (as Liam says "Ma-Da") and Grandpa ("Pa-Pa"). He should be giving some of his famous hugs and kisses. We had a great visit with them.. more on that later.
The doc is the follow up with the neurology. So we will hopefully get the results of the EEG. I was totally fine with that and expecting nothing but now I am freakin myself out a bit. I know it would be better to save the freakin out for when it is really called for. I guess I am getting better with it, this time it isn't as bad as it has been in the past. But I really really dislike this feeling.
So some of these answers will be there tomorrow, and some more we will have to wait.
Liam just started with his sign interpretter at school and he is doing well. Though his teacher is really stricht and only tells the kids the intruction once, sometimes Liam doesn't understand the first time, and of course sometimes he doesn't listen.. so it will be intersting to see if Liam can learn how to follow directions the first time... I hope he can.
Well, I should get off of this world wide web and wait and do the researching until later, like maybe after the docs say, yes he has this. It would really be doing myself a big favor.
Sorry if this all doesn't make sense.. it makese sense to me.
Well, a lil'.
Thursday, July 5, 2007
doctor appointments..
Today I had to take Liam for his yearly checkup with the developmental pediatrician. He didn't see the same Dr as last year.. so this doctor wasn't as in the know.. I suppose. He had a student with him. He did note to me and his student that fish oils Omega 3 and Omega 6 has proven to be beneficial in some recent medical studies. I stopped Liam on the fish oil to see how he would test on some blood testing addressing that without it, but he had that blood testing today so we will start back up. Need to buy some more also! Next pay day in 10 days I plan to order a bunch. For some reason the past few months or so we have been flat broke all the time. I don't know what it is .. but it is getting really frustrating! The next pay day it looks like we will finally be ahead.
Anyway, the doctor ordered a lead test and a genetic test for fragile x syndrome. I already knew a bit about both of these ailments/disorders. I don't think Liam will come up positive for either, but I am fine with thoroughness, as long as it isn't overkill or super invasive.
I did ask the doctor if he thought another possible causation for Liam to have all these issues could be that he has a mild cerebral palsy or another form of brain damage. He said he didn't think cerebral palsy likely because kids with cp have hypertonia and Liam has the opposite, hypotonia. He said some other form of brain damage could be possible, but that it wouldn't be much help to have an MRI. ( I am not sure what his reasoning is) And that in a year or so there will be some new form of super spiffy MRI that we might want to think about doing that new type of brain MRI at that point.
I speculate his reasoning may be that currently an MRI brain will be very hard to attain on a 4 year old being that you have to be perfectly still.. and it isn't really necessary because if it finds brain damage, that is good to know but it really won't change much for Liam, he will still need the exact same type of treatment that he currently is getting: lots of therapy targeting his specific deficits. The only thing that is likely with his symptoms is brain damage, and that means it won't get worse, and there isn't any treatment other than therapy that he is already getting. So I think maybe he thinks that if we were to do MRI now he would have to be sedated .. not really worth it if we don't really need to know if there is brain damage or not.. but, it would be nice to know. So if the technology improves and he can have MRI without sedation then it becomes worth it to see..
Well, he didn't say that but that is my guess. Suppose I should have gotten clarification, but for me, when dealing with doctors, I always think of the questions I really should have asked later on.
Liam was supposed to have another doctor appointment tomorrow but I decided to reschedule. Two days in a row driving so far to the doctor I just couldn't do it. Plus his blood work isn't done for that doctor, so better to wait anyway. After this appointment he may have one or two more with this same doctor and then hopefully doctor appointments should chill out for awhile. I hope. Well, that is about it. The grandparents are coming to visit this weekend until Wednesday, so I will be spending tomorrow cleaning and getting ready for guests.
Oh, also. Liam has started speaking more and more words now. He can say many single words with more consistency. I will write more about this and have wrote some other posts about this.. but I just thought about it, that he should really have a different term instead of mute now, because he is really speaking some real words now. I thought myself really clever because I thought up a term for him... "hard of speaking" It came to me reading a book about Deaf culture for sign class.. they talk about "hard of hearing" vs "deaf". So I thought, hey, Liam is more "hard of speaking" now than he is "mute".
Anyway, the doctor ordered a lead test and a genetic test for fragile x syndrome. I already knew a bit about both of these ailments/disorders. I don't think Liam will come up positive for either, but I am fine with thoroughness, as long as it isn't overkill or super invasive.
I did ask the doctor if he thought another possible causation for Liam to have all these issues could be that he has a mild cerebral palsy or another form of brain damage. He said he didn't think cerebral palsy likely because kids with cp have hypertonia and Liam has the opposite, hypotonia. He said some other form of brain damage could be possible, but that it wouldn't be much help to have an MRI. ( I am not sure what his reasoning is) And that in a year or so there will be some new form of super spiffy MRI that we might want to think about doing that new type of brain MRI at that point.
I speculate his reasoning may be that currently an MRI brain will be very hard to attain on a 4 year old being that you have to be perfectly still.. and it isn't really necessary because if it finds brain damage, that is good to know but it really won't change much for Liam, he will still need the exact same type of treatment that he currently is getting: lots of therapy targeting his specific deficits. The only thing that is likely with his symptoms is brain damage, and that means it won't get worse, and there isn't any treatment other than therapy that he is already getting. So I think maybe he thinks that if we were to do MRI now he would have to be sedated .. not really worth it if we don't really need to know if there is brain damage or not.. but, it would be nice to know. So if the technology improves and he can have MRI without sedation then it becomes worth it to see..
Well, he didn't say that but that is my guess. Suppose I should have gotten clarification, but for me, when dealing with doctors, I always think of the questions I really should have asked later on.
Liam was supposed to have another doctor appointment tomorrow but I decided to reschedule. Two days in a row driving so far to the doctor I just couldn't do it. Plus his blood work isn't done for that doctor, so better to wait anyway. After this appointment he may have one or two more with this same doctor and then hopefully doctor appointments should chill out for awhile. I hope. Well, that is about it. The grandparents are coming to visit this weekend until Wednesday, so I will be spending tomorrow cleaning and getting ready for guests.
Oh, also. Liam has started speaking more and more words now. He can say many single words with more consistency. I will write more about this and have wrote some other posts about this.. but I just thought about it, that he should really have a different term instead of mute now, because he is really speaking some real words now. I thought myself really clever because I thought up a term for him... "hard of speaking" It came to me reading a book about Deaf culture for sign class.. they talk about "hard of hearing" vs "deaf". So I thought, hey, Liam is more "hard of speaking" now than he is "mute".
Friday, June 29, 2007
about the EEG
The EEG appointment went OK.
I kept Liam up pretty late. We hung around the house until about midnight or 1 am and then we went to Denny's. I ordered water and a chocolate milkshake. Liam signed he wanted a coke. I took it upon myself to order him a brownie sundae with vanilla ice cream, and interpreted for the waitress that he ordered a coke. Surprisingly, it is kinda hard to eat at 1 am. We probably could have done with just sharing his dessert but oh well. I hate to say that I did care a bit about what other people were thinking in the restaurant once we got there. Of course not enough to not go, so that is good enough. But I found myself wanting to explain to people, I am not a bad mother for taking this child out in the middle of the night to Denny's! but oh well.
On the way home Liam fell asleep. Then we woke up around 6 or so, so he ended up getting about 4 hours of sleep, which was fine with the EEG techies.
So I got Liam all showered up and ready to go. Once we got to the hospital I was very happy with how Liam behaved, and I think I did a good job too. I didn't show Liam any of my nervousness and I just told him what they would do, and it's no big deal, etc etc. The techie marked with blue marker 30 or 40 Xs all over Liam's head, and 2 on his chest. Then she rubbed gel with grit on the blue X's. Then she attached the wired probes (not really sure what they are really called). Liam thought he looked cool, he checked himself all out in the mirror and smiled. I kept telling him how cool he looked with all the lil whatever they call them stuck all over his head.
I was telling him how neat it was, I know that a lot of his attitude about it had to do with my attitude towards it, (or the attitude I portrayed to Liam). I didn't really think all of this EEG business was neat at all but the things we do for our kids....
The techie lady was really sweet. She took a picture of Liam with a polaroid with all the probes attatched and gave it to us. (I will scan it and put it up here later. )
My mother is to credit for teaching me this, that children pick up on your feelings, even if you don't verbalize it, so in a situation like this, you have to put on a costume, a happy costume. It wasn't too difficult for this test, but it was difficult last November. Last November when Liam was hospitalized, I did a good job of not showing Liam my fears, but it was much more difficult. The day he was admitted to the hospital, the Dr. thought he had meningitis, I asked the Dr, "can he lose his hearing?" not knowing whether if he had this, could they help the hearing loss if they catch it and hospitalize him or is it difficult to prevent hearing loss.. etc. I knew from my sign classes that menengitis causes deafness. He very coldly, and very frankly told me, Mrs...don't worry over hearing, this is the least of your concerns, even though we are taking him to the hospital immediatley, this child may die. I did a good job of hiding my fears for Liam then. Though I was so afraid. That is when my mother first told me: Annie, you need to be strong, don't show him how afraid you are, because how you act can be very powerful, if he gets worried, it can be very bad. I had called her to fill her in while my husband sat in with Liam as I went home to shower and get my things to stay at the hospital with him. Obviously, Liam is fine now. I will have to record that story at a later date..Even as I write this now, knowing Liam is just fine now, my heart can't help but sink and fall upon my stomach, thinking about that week.
So during the test, we just laid down and watched TV in a dark room, Liam was very tired but he wouldn't go to sleep which would have been the most optimal for the test. We laid there being still and quiet in a big comfy recliner chair, Liam on top of me, while I stole a few zzz's for myself. In the end of the test, they blinked a series or flashing white lights quickly then increasingly quicker right in our faces. I kept my eyes open. I guess it's safe to say I don't have any seizure disorder either now, cause I withstood the flashing lights and didn't start epileptn'. Liam did do a little bit of the tremors with his arms while the light was going, which he always does out of enjoyment I think when he sees lights or fans or anything that is sensory pleasin' to him. So we will see what his brain was doing during that. I think it is gonna turn out fine.
Not sure when I get the results back. We will drive about an hour to the Dr that ordered the EEG test on July 5th. The very next day in the same hour away city we have another appointment with another Dr. The first is with the pediatric neurologist and the second is his yearly check up with the developmental pediatrician.
I want to ask both of them if the cause of all these disorders/issues that Liam has could be cerebral palsy or some other form of brain damage. He has never had any brain imaging done and when you look up all his disorders, verbal apraxia, developmental dyspraxia, fine-motor dyspraxia, sensory integration disorder, hypotonia, and dysarthria for the ones that there is a known cause brain damage is always on the list of culprits, for the ones there isn't a known cause it says "neurological impairment" or speculates at that.
I am not fanatical about knowing, but still, it would be nice to know. I don't think knowing will give us any more hope than we already have for his recovery, but I guess I can't be certain of that.
I have to take him really really soon, like should have yesterday, or a month ago, to get the blood work done for the doctor he is seeing on the 5th. Oh, I suck sometimes. But it is really easy to procrastinate having your child poked and prodded and his blood stolen.
I keep thinking at some point all of this medicalness will be over. At some point maybe he won't have to go to the doctors anymore, just the therapists. It will happen, maybe next year. Oh my oh my, my heart goes out to all the kids and parents who spend too much time in medical-ness.
If only I could heal the world..
I kept Liam up pretty late. We hung around the house until about midnight or 1 am and then we went to Denny's. I ordered water and a chocolate milkshake. Liam signed he wanted a coke. I took it upon myself to order him a brownie sundae with vanilla ice cream, and interpreted for the waitress that he ordered a coke. Surprisingly, it is kinda hard to eat at 1 am. We probably could have done with just sharing his dessert but oh well. I hate to say that I did care a bit about what other people were thinking in the restaurant once we got there. Of course not enough to not go, so that is good enough. But I found myself wanting to explain to people, I am not a bad mother for taking this child out in the middle of the night to Denny's! but oh well.
On the way home Liam fell asleep. Then we woke up around 6 or so, so he ended up getting about 4 hours of sleep, which was fine with the EEG techies.
So I got Liam all showered up and ready to go. Once we got to the hospital I was very happy with how Liam behaved, and I think I did a good job too. I didn't show Liam any of my nervousness and I just told him what they would do, and it's no big deal, etc etc. The techie marked with blue marker 30 or 40 Xs all over Liam's head, and 2 on his chest. Then she rubbed gel with grit on the blue X's. Then she attached the wired probes (not really sure what they are really called). Liam thought he looked cool, he checked himself all out in the mirror and smiled. I kept telling him how cool he looked with all the lil whatever they call them stuck all over his head.
I was telling him how neat it was, I know that a lot of his attitude about it had to do with my attitude towards it, (or the attitude I portrayed to Liam). I didn't really think all of this EEG business was neat at all but the things we do for our kids....
The techie lady was really sweet. She took a picture of Liam with a polaroid with all the probes attatched and gave it to us. (I will scan it and put it up here later. )
My mother is to credit for teaching me this, that children pick up on your feelings, even if you don't verbalize it, so in a situation like this, you have to put on a costume, a happy costume. It wasn't too difficult for this test, but it was difficult last November. Last November when Liam was hospitalized, I did a good job of not showing Liam my fears, but it was much more difficult. The day he was admitted to the hospital, the Dr. thought he had meningitis, I asked the Dr, "can he lose his hearing?" not knowing whether if he had this, could they help the hearing loss if they catch it and hospitalize him or is it difficult to prevent hearing loss.. etc. I knew from my sign classes that menengitis causes deafness. He very coldly, and very frankly told me, Mrs...don't worry over hearing, this is the least of your concerns, even though we are taking him to the hospital immediatley, this child may die. I did a good job of hiding my fears for Liam then. Though I was so afraid. That is when my mother first told me: Annie, you need to be strong, don't show him how afraid you are, because how you act can be very powerful, if he gets worried, it can be very bad. I had called her to fill her in while my husband sat in with Liam as I went home to shower and get my things to stay at the hospital with him. Obviously, Liam is fine now. I will have to record that story at a later date..Even as I write this now, knowing Liam is just fine now, my heart can't help but sink and fall upon my stomach, thinking about that week.
So during the test, we just laid down and watched TV in a dark room, Liam was very tired but he wouldn't go to sleep which would have been the most optimal for the test. We laid there being still and quiet in a big comfy recliner chair, Liam on top of me, while I stole a few zzz's for myself. In the end of the test, they blinked a series or flashing white lights quickly then increasingly quicker right in our faces. I kept my eyes open. I guess it's safe to say I don't have any seizure disorder either now, cause I withstood the flashing lights and didn't start epileptn'. Liam did do a little bit of the tremors with his arms while the light was going, which he always does out of enjoyment I think when he sees lights or fans or anything that is sensory pleasin' to him. So we will see what his brain was doing during that. I think it is gonna turn out fine.
Not sure when I get the results back. We will drive about an hour to the Dr that ordered the EEG test on July 5th. The very next day in the same hour away city we have another appointment with another Dr. The first is with the pediatric neurologist and the second is his yearly check up with the developmental pediatrician.
I want to ask both of them if the cause of all these disorders/issues that Liam has could be cerebral palsy or some other form of brain damage. He has never had any brain imaging done and when you look up all his disorders, verbal apraxia, developmental dyspraxia, fine-motor dyspraxia, sensory integration disorder, hypotonia, and dysarthria for the ones that there is a known cause brain damage is always on the list of culprits, for the ones there isn't a known cause it says "neurological impairment" or speculates at that.
I am not fanatical about knowing, but still, it would be nice to know. I don't think knowing will give us any more hope than we already have for his recovery, but I guess I can't be certain of that.
I have to take him really really soon, like should have yesterday, or a month ago, to get the blood work done for the doctor he is seeing on the 5th. Oh, I suck sometimes. But it is really easy to procrastinate having your child poked and prodded and his blood stolen.
I keep thinking at some point all of this medicalness will be over. At some point maybe he won't have to go to the doctors anymore, just the therapists. It will happen, maybe next year. Oh my oh my, my heart goes out to all the kids and parents who spend too much time in medical-ness.
If only I could heal the world..
Tuesday, June 26, 2007
EEGs
Tomorrow morning Liam has an EEG appointment (to see if he is having seizures) at 8 30 am. So he can't sleep tonight. My plans to keep him up are, movies, movies, movies... and a midnight outing to an all night diner and a trip to the park to look at the stars probably prior to the eating out.
I am sure some people at the restaurant will be thinking what the heck is that lil boy doing out this late? But ya know what, I really don't care ! It is more important to me that my son have a good time and make the best out of a sucky-suck suck-suck situation.
I wonder if he will remember this when he gets older. Like make a memory. I don't have many 4 year old memories, but I have some. My first memory actually I was 4 and I remember: I walked up to my Dad and brother who were tinkering with the computer in the computer room, and I asked my Dad, "Hey Dad, what does 'times' mean? Like 2 times 2 ? What does that mean." He said something to the effect of "not now, I am busy" And so I went off and pondered it. I don't remember how, but I remember that I figured it out on my own! Then I ran back so excited to my brother and my Dad and said" I figured it out it means 2, 2 times!! I get it! 2 times 2 is 4! 3 times 3 is 9 ! " Then I ran outside the front door and screamed so excitedly 2 TIMES 2 IS FOUR! 2 TIMES 2 IS FOUR! Up and down our rocky path from the front door to the sidewalk. That is my first memory. I know that for sure. After that my memories are all muddled up and not in correct order. There were a lot of secrets in my life around the age of 4, 5, 6, 7 especially and up due to my sister's drug addiction and intense involvement with some shady things, and my parents separation and divorce. So I don't necessarily even trust my own memory around then. Because my perception was distorted by what people told me to cover up the truth. Which, is kind of sad.
Anyway, back on subject from that tangent.
I just feel bad for Liam, I know he isn't the sickest kid in the world, but he has to go to the Dr and have all these tests far more than I ever had to. I was never even sick really. Liam was hospitalized for a week last fall. He was sick with pneumonia for months on his first birthday, he has travelled out of state for Dr appointments, the list goes on. And he partakes in therapy a grand total of 15 times per week. By my calculations that is about 780 therapy sessions per year. About 390-780 hours of therapy per year.
If I could somehow add all the hours I have spent total in any kind of medical setting with me as the patient, I have not even come close to the amount of "patient hours" that Liam has hit.
I don't mean to complain, on his behalf. I know he doesn't have it so bad, but he also doesn't have it so good. Not as good as most of us have it,as I have it, and take for granted everyday.
I try to go without speaking, for a day, for a week. I can't do it. For fear of what others will think of me, that is pretty pathetic.
I know that children live and die in the hospital. Babies even. Lots of kids have it a million times worse than Liam. But I can't think about that for too long. Because I am selfish and because it will likely break my heart into a million pieces if I do. But this is on my list of top 10 things to ask God when we meet, why do some little babies and children suffer so immensely ?
My husband's chaplain told him, (and he told me), that just because other people are in much worse pain than you, it doesn't make your pain any less. That is a very hard concept for me. Ever since I was a child I have always been in the mindset if I am hurting, to think about how much more others are hurting, and that should make me stop hurting, because it should be selfish in some way to be in that pain if others are in worse pain. I know that is kind of messed up. But that is just how I have always thought. Sometimes it can really make a lot of sense and be helpful. Like if I am just working myself up over nothing. Like as an example, if I am upset because the restaurant effed up my order, I might think, hey, ya know what, instead of getting pissed off about this and possibly making the waitress and the cooks day worse, (and my own) I should just be polite about it, and be thankful that I am fortunate enough to have food to eat. Cause some people don't, ya know. Like no. food. at. all. So to me it makes sense a lot of times. Does anyone else think like me in this regard? I might be the only one..
Well there is a lot more on my mind right now that I would like to record. But it will have to be written later because we have got to get on with our staying up all night adventures. As a reminder to myself, write about/discuss family traditions specifically Christmas time charity at a later date.
I am sure some people at the restaurant will be thinking what the heck is that lil boy doing out this late? But ya know what, I really don't care ! It is more important to me that my son have a good time and make the best out of a sucky-suck suck-suck situation.
I wonder if he will remember this when he gets older. Like make a memory. I don't have many 4 year old memories, but I have some. My first memory actually I was 4 and I remember: I walked up to my Dad and brother who were tinkering with the computer in the computer room, and I asked my Dad, "Hey Dad, what does 'times' mean? Like 2 times 2 ? What does that mean." He said something to the effect of "not now, I am busy" And so I went off and pondered it. I don't remember how, but I remember that I figured it out on my own! Then I ran back so excited to my brother and my Dad and said" I figured it out it means 2, 2 times!! I get it! 2 times 2 is 4! 3 times 3 is 9 ! " Then I ran outside the front door and screamed so excitedly 2 TIMES 2 IS FOUR! 2 TIMES 2 IS FOUR! Up and down our rocky path from the front door to the sidewalk. That is my first memory. I know that for sure. After that my memories are all muddled up and not in correct order. There were a lot of secrets in my life around the age of 4, 5, 6, 7 especially and up due to my sister's drug addiction and intense involvement with some shady things, and my parents separation and divorce. So I don't necessarily even trust my own memory around then. Because my perception was distorted by what people told me to cover up the truth. Which, is kind of sad.
Anyway, back on subject from that tangent.
I just feel bad for Liam, I know he isn't the sickest kid in the world, but he has to go to the Dr and have all these tests far more than I ever had to. I was never even sick really. Liam was hospitalized for a week last fall. He was sick with pneumonia for months on his first birthday, he has travelled out of state for Dr appointments, the list goes on. And he partakes in therapy a grand total of 15 times per week. By my calculations that is about 780 therapy sessions per year. About 390-780 hours of therapy per year.
If I could somehow add all the hours I have spent total in any kind of medical setting with me as the patient, I have not even come close to the amount of "patient hours" that Liam has hit.
I don't mean to complain, on his behalf. I know he doesn't have it so bad, but he also doesn't have it so good. Not as good as most of us have it,as I have it, and take for granted everyday.
I try to go without speaking, for a day, for a week. I can't do it. For fear of what others will think of me, that is pretty pathetic.
I know that children live and die in the hospital. Babies even. Lots of kids have it a million times worse than Liam. But I can't think about that for too long. Because I am selfish and because it will likely break my heart into a million pieces if I do. But this is on my list of top 10 things to ask God when we meet, why do some little babies and children suffer so immensely ?
My husband's chaplain told him, (and he told me), that just because other people are in much worse pain than you, it doesn't make your pain any less. That is a very hard concept for me. Ever since I was a child I have always been in the mindset if I am hurting, to think about how much more others are hurting, and that should make me stop hurting, because it should be selfish in some way to be in that pain if others are in worse pain. I know that is kind of messed up. But that is just how I have always thought. Sometimes it can really make a lot of sense and be helpful. Like if I am just working myself up over nothing. Like as an example, if I am upset because the restaurant effed up my order, I might think, hey, ya know what, instead of getting pissed off about this and possibly making the waitress and the cooks day worse, (and my own) I should just be polite about it, and be thankful that I am fortunate enough to have food to eat. Cause some people don't, ya know. Like no. food. at. all. So to me it makes sense a lot of times. Does anyone else think like me in this regard? I might be the only one..
Well there is a lot more on my mind right now that I would like to record. But it will have to be written later because we have got to get on with our staying up all night adventures. As a reminder to myself, write about/discuss family traditions specifically Christmas time charity at a later date.
Sunday, June 24, 2007
blue and white airplanes
Most of the time when I am talking to Liam I use sign and voice simultaneously. But, sometimes I sign only, no voice. Sometimes I just want to test his comprehension of ASL and sometimes it is because I am eating or otherwise unable to speak or be heard. (Both Liam and Elliot can understand well when I use no voice) Judah is still learning.... :O)
Grandma and Grandpa are coming to visit in a few weeks. So just now I was asking Liam, in sign only, no voice.. "WHEN GRANDMA AND GRANDPA COME VISIT YOU, COME IN AIRPLANE OR CAR, WHICH?" and Liam thought about it.. then he signed "AIRPLANE, BLUE AND WHITE" That kid is smart :O) I wonder if their airplane will be blue and white.. a lot them are. Maybe they can special request one.. HAr HAR.
Grandma and Grandpa are coming to visit in a few weeks. So just now I was asking Liam, in sign only, no voice.. "WHEN GRANDMA AND GRANDPA COME VISIT YOU, COME IN AIRPLANE OR CAR, WHICH?" and Liam thought about it.. then he signed "AIRPLANE, BLUE AND WHITE" That kid is smart :O) I wonder if their airplane will be blue and white.. a lot them are. Maybe they can special request one.. HAr HAR.
Saturday, June 23, 2007
new words
Over the next few weeks I want to count up how many words Liam is speaking. I will divide it up into two categories:
category 1: (words that others can understand when Liam speaks)
category 2: (words that others might not understand, but I understand when Liam speaks)
He has really started speaking more lately. With sign he can sign over 1000 signs now and simple sentences, like GO PLAYGROUND TUESDAY PLEASE ? or GO K'S HOUSE PLAY. With speech now he has just recently had a spurt in words. I have noticed him speaking more in the past few weeks than he had been speaking before.
category 1: no, yes, mom, dad, eat
category 2: cookie, bobby (his teacher), milk, play, Tuesday, Elliot
I will have to add more later.. I want to be accurate so I will write more as I hear throughout the day over the coming weeks.
category 1: (words that others can understand when Liam speaks)
category 2: (words that others might not understand, but I understand when Liam speaks)
He has really started speaking more lately. With sign he can sign over 1000 signs now and simple sentences, like GO PLAYGROUND TUESDAY PLEASE ? or GO K'S HOUSE PLAY. With speech now he has just recently had a spurt in words. I have noticed him speaking more in the past few weeks than he had been speaking before.
category 1: no, yes, mom, dad, eat
category 2: cookie, bobby (his teacher), milk, play, Tuesday, Elliot
I will have to add more later.. I want to be accurate so I will write more as I hear throughout the day over the coming weeks.
Friday, June 22, 2007
Deaf Chat Coffee
We are getting ready to go to Deaf Chat Coffee tonight. Me and Liam will head out in a bit, while my hubby will stay home with Elliot. Deaf Chat Coffee is a group of people who get together at a coffee house/cafe and communicate in sign language. The people who come out are Deaf, hard of hearing, interpreters, ASL students, or children of any of the above. Then there is Liam, the mute who is learning sign language. Our local Deaf community has embraced Liam.. so I am glad for that. He has lots of adults who sign to look up to, and children friends that use sign now too. About 20-30 people show up every other Friday night. One of his friends there (his best friend there) is a little girl I'll call K. She is a year older than him. He is in love with her ! He calls K on his videophone and they chat it up in sign. It is magical to watch.
Wednesday, June 20, 2007
Changes are afoot...
and I'm nervous.
For some of the changes I am excited.. for others I am really not so excited, and more apprehensive.
Liam starts with his American Sign Language interpreter in the classroom on July 9th. For this I am beyond happily excited. I can't wait for him to be able to communicate more. I know in no time he will expand into even more complex sentences and ideas, beyond what I have already been able to teach him.
I found out yesterday.. or was it two days ago ? Oh well, I don't know but it doesn't really matter... I found out recently, that Liam's speech therapist is changing companies and won't be Liam's therapist anymore. I love love loved this therapist. She orchestrated a trip (and came with us) for us to see Dr. Nancy Kaufman of Michigan, thee apraxia expert, and ever since that trip, Liam was catapulted into a tazmanian devil like spiral of progress. Our insurance was able to pay for the week long intensive therapy session in another state, completely, hotel stay, government credit card for food and gas, rental car, etc. Tricare is the world's best insurance I have got to say. She came with us and I think had to pay out of pocket.. but that is the dedication she has to her kids, and to Liam. She is seeing Liam 7 times per week, 5 paid for by the school and 2 by Tricare. Because she is a speech "pathologist" and has a masters in speech pathology this is possible. Now I hear Liam's new therapist only has a bachelors and so he will have two separate therapists. The therapist with the bachelors degree will do his school portion, 5x a week, then he will have a different "pathologist" 2x week through Tricare. (because Tricare will only pay for a pathologist) It's confusing, I know. It's almost a full time job knowing all the ins and outs of the therapy world, the IEP world, the insurance, learning an entire nother language, and on and on and on. My husband knows about 5% of the details. And really, it's not because he doesn't care.. it's because I just don't have the time to explain it all to him, when you compare the benefits of him having full disclosure vs. the benefits of getting to discuss something fun with him, I just say forget it. This is my world, and I will run it. I did ask him to learn the oral motor stretches (Beckman) so that we could have a better chance at doing this therapy with Liam everyday. He hasn't yet. I'm still hoping.
So anyway. I am really nervous about Liam's new therapists. I don't know if they are qualified to treat children with apraxia. All the books say that apraxia is difficult to treat, and you want a therapist who knows what they are doing.. who has experience. And everyone says Liam is the most severe case of apraxia. And this is the time. The most important time to hurry up and acquire speech before it's too late. I have read this is the time of immense importance for language apprehension as far as the brain is concerned : between the ages 4 and 5.
The other big change is Liam is changing to the new classroom starting July 9th. He will have a whole new room, all new friends, all new rules, a new teacher (a man!) and of course his 1 on 1 interpreter with him who I met today! hooray!
Well, we will see how all these changes go, as the next few months pass along by. I am glad I have this journal to write down all my thoughts (or some) and go back later, and kind of reflect on how I was feeling then and how things really turned out. Because my memory is just terrible
!
On a totally different (except somehow now related) note. I watched the movie Eternal Sunshine of the Spotless Mind this weekend and LOVED it ! I plan to watch it again tonight !
For some of the changes I am excited.. for others I am really not so excited, and more apprehensive.
Liam starts with his American Sign Language interpreter in the classroom on July 9th. For this I am beyond happily excited. I can't wait for him to be able to communicate more. I know in no time he will expand into even more complex sentences and ideas, beyond what I have already been able to teach him.
I found out yesterday.. or was it two days ago ? Oh well, I don't know but it doesn't really matter... I found out recently, that Liam's speech therapist is changing companies and won't be Liam's therapist anymore. I love love loved this therapist. She orchestrated a trip (and came with us) for us to see Dr. Nancy Kaufman of Michigan, thee apraxia expert, and ever since that trip, Liam was catapulted into a tazmanian devil like spiral of progress. Our insurance was able to pay for the week long intensive therapy session in another state, completely, hotel stay, government credit card for food and gas, rental car, etc. Tricare is the world's best insurance I have got to say. She came with us and I think had to pay out of pocket.. but that is the dedication she has to her kids, and to Liam. She is seeing Liam 7 times per week, 5 paid for by the school and 2 by Tricare. Because she is a speech "pathologist" and has a masters in speech pathology this is possible. Now I hear Liam's new therapist only has a bachelors and so he will have two separate therapists. The therapist with the bachelors degree will do his school portion, 5x a week, then he will have a different "pathologist" 2x week through Tricare. (because Tricare will only pay for a pathologist) It's confusing, I know. It's almost a full time job knowing all the ins and outs of the therapy world, the IEP world, the insurance, learning an entire nother language, and on and on and on. My husband knows about 5% of the details. And really, it's not because he doesn't care.. it's because I just don't have the time to explain it all to him, when you compare the benefits of him having full disclosure vs. the benefits of getting to discuss something fun with him, I just say forget it. This is my world, and I will run it. I did ask him to learn the oral motor stretches (Beckman) so that we could have a better chance at doing this therapy with Liam everyday. He hasn't yet. I'm still hoping.
So anyway. I am really nervous about Liam's new therapists. I don't know if they are qualified to treat children with apraxia. All the books say that apraxia is difficult to treat, and you want a therapist who knows what they are doing.. who has experience. And everyone says Liam is the most severe case of apraxia. And this is the time. The most important time to hurry up and acquire speech before it's too late. I have read this is the time of immense importance for language apprehension as far as the brain is concerned : between the ages 4 and 5.
The other big change is Liam is changing to the new classroom starting July 9th. He will have a whole new room, all new friends, all new rules, a new teacher (a man!) and of course his 1 on 1 interpreter with him who I met today! hooray!
Well, we will see how all these changes go, as the next few months pass along by. I am glad I have this journal to write down all my thoughts (or some) and go back later, and kind of reflect on how I was feeling then and how things really turned out. Because my memory is just terrible
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On a totally different (except somehow now related) note. I watched the movie Eternal Sunshine of the Spotless Mind this weekend and LOVED it ! I plan to watch it again tonight !
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