In a drop of water

A call for your help.

2010-04-21T07:03:00.001-07:00

I have been struggling with insurance to get an fm hearing device for Liam for over a year now. I've come to the realization that it's not going to happen. So I am now throwing my hope into you, and your generosity.

Liam was diagnosed with auditory processing disorder some time ago, and uses this device at school to help him hear his teacher. Auditory processing disorder is not a problem with the actual ear but with how the brain processes the information the ear sends to it. So, just as the name implies, it a problem with the brain processing the auditory signals.

For Liam, it is impossible to focus on one speaker in noisy environment. Even the hum of an air conditioner can make it difficult for him to hear a speaker. When background noise is present, he often mistakes what is being said completely. It's contributing so much to his learning difficulties. He still doesn't have a good sound recognition. IE he is unaware of what sounds each of our letters produce. He just now, at 7, has for the most part mastered the alphabet. And I really wonder how much of his apraxia could be attributed to his auditory processing disorder. It's certainly not helping matters. I really want to get him an fm system at home so that we can get more information to him. I am so concerned about him because he has repeated Kindergarten this year and really needs to repeat Kindergarten again as he hasn't mastered the curriculum. The FM system helps, and here is how: Liam wears a hearing aid mold on both ears. The speaker he needs to focus on wears a microphone on their shirt which directly sends signal to Liam's hearing aid mold with an fm boot. What the speaker says is slightly amplified and is free of background interference as it is going directly into Liam's ear. Liam can hear what is being said to him, loud and clear! And he has less of a barrier to learn.

Like I said, I can't get insurance to cover this. I am asking for friends, family, and strangers to please help us out and make a donation. Once we reach our goal of 3,000$ I will purchase the FM and post a video of Liam thanking everyone (wearing his new gear of course!). Partly so that you all know I'm not some greedy scammer, but mostly so that you all can share in our joy! Thank you very much for reading this and considering donating!

xoxo

Anne

It's so nice to have Liam back

2010-04-21T06:29:00.000-07:00

Liam is SEVEN now.

This year he was very ill. He was in and out of the hospital for months. It was completely awful and frightening as anyone with a medically ill child can attest. At first they thought he had brain tumor(s). Multiple doctors told me that. Told me to prepare for it. And we struggled and fought with medicaid to get an MRI. He had an MRI scheduled, but the doctors wanted him to have one sooner- and it was an absolute pain to get that accomplished, thankyouverymuch medicaid. Of course the whole time I was freaking out, waiting on pins and needles to find out if my little boy would be going to chemotherapy with his grandfather or not. My Dad was just diagnosed recently with non-hodgkins lymphoma. I had these horrid dreams about Liam and my Dad going to chemo together, and laughing and drinking out of crazy straws. Imagine getting chemotherapy at the Chocolate Factory with Charlie and the rest. It was one of the creepiest recurring dreams I've ever had. I could feel the brain tumors. I was so paranoid about it. Constantly worrying. How can you not. The fear that your child might die. There's no escape. Somedays I called my Dad 10 times. I might be a bit conservative in my estimation? To my complete joy, he wasn't diagnosed, they found his MRI to be fine.

Then they thought he had leukemia. Nope. Now they think he has some rare autoimmune response to swine flu. We get some test results soon. It makes sense, and I am thinking they are right. He had the swine in October, and started getting sick pretty much right after. He had headaches, daily vomiting, hallucinations, confusion, itching, fatigue....more.

Liam is feeling better. He was out of school for 3 1/2 months, but he just recently went back. Everyone at school seems so happy to see him. Just yesterday when I picked him up, one of his best friends announced to everyone "It's so nice to have Liam back".

And I, with my whole heart, agree.

And we're back!

2009-07-22T20:52:00.000-07:00

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.

babies babies babies

2007-08-11T11:16:00.000-07:00

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.

Some little things I want to remember..

2007-08-10T13:01:00.000-07:00

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.

First Video

2007-07-26T07:20:00.001-07:00

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.

Great news !!!

2007-07-25T14:11:00.000-07:00

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 !

Lorenzo's Oil

2007-07-16T07:40:00.001-07:00

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.

everything is all fine !

2007-07-12T19:30:00.001-07:00

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.

Sometimes the internet is not your friend...

2007-07-11T20:29:00.001-07:00

... 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'.

doctor appointments..

2007-07-05T19:47:00.000-07:00

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".

about the EEG

2007-06-29T15:24:00.000-07:00

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..

EEGs

2007-06-26T17:39:00.000-07:00

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.

blue and white airplanes

2007-06-24T17:47:00.000-07:00

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.

new words

2007-06-23T14:27:00.000-07:00

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.

Deaf Chat Coffee

2007-06-22T14:30:00.000-07:00

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.

Changes are afoot...

2007-06-20T18:01:00.000-07:00

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 !

books books books

2007-06-19T11:28:00.000-07:00

I haven't been online much. Which I find to be a good thing much of the time. I have been reading this book called "George & Sam" about the lives of a family with 2 autistic boys, George and Sam. They are raised by their single mother, and have a younger brother.. Jake, I think. I am about half way through.

Tomorrow is Liam's end of school party. They are going to do a concert. I wonder how that will go. They are going to sing some songs.. I am going to video record it. I am excited about it, I know Liam won't be singing along but I think the songs have motions that he will be doing. I bet it will be really cute. After this week Liam has off school for 2 weeks then he starts summer session. (Some kids with more severe disabilities qualify for year round schooling with the idea that if they miss out on therapy through the summer the regression will be quite significant) I am not sure how long summer session goes for but he will have another 2 week break at some point this summer before school starts again for the regular session kids in September.

On July 9th Liam moves up to the 4 year old classroom ! AND... drum roll.......... he gets his sign language interpreter !!! I AM SO SO SO SO SO EXCITED! He has thrived on the sign language I have been able to teach him, he is able to communicate complex things to me, like today he told me he wanted to invite our neighbors over to spend the night for a slumber party through communicating in sign language. Sign language has been such a wonderful amazing blessing for our family, I just love it. It is helping Liam to speak also.. some words that he can actually speak now while he signs it at the same time: Help, Elliot, Cookie, Milk, Juice, Orange.. there are more. But because apraxia is a problem in the brain with coordinating the muscles, I believe that when he signs it is involving other parts of the brain, so it is helping the brain to make that connection. His communication is far more advanced in signing, he can sign sentences and express abstract thoughts.. with speech he is just now beginning single words that are still difficult to understand (but the simultaneous sign makes it easier!). So anyway.. I am just beyond excited and hopeful that his communication is going to increase increase increase once he has a sign interpreter with him at school who can teach him more sign and he will be UNDERSTOOD by his peers and teachers at school ! HOORAY ..

Elliot (the younger son) is tugging at me to read him some books, so that must be it for now.

on bratty boys..

2007-06-10T16:51:00.000-07:00

Today we went to the playground.

Liam and Elliot were sliding, and biking, and swinging, and generally having a good ole time. Then suddenly a clan of loud obnoxious boys appeared. The youngest little boy was about 4. He kept taking his shoes off. At one point my Elliot ran off with his shoes and I had to intervene. There were about 5 other boys with this little fancy free footed boy, mostly pre-teen or teenagers. They came to the playground without a parent. These boys were running a muck, being generally bratty. I heard these older boys repeatedly call the little shoeless boy "Retard".. they were saying, "Come over here retard" or "Put your shoes on retard".

The little shoeless boy to me seemed not to be a "retard". Of course, it doesn't really matter... Because ANY way it is never cool to call some "retard" in a way that is meant to be offensive. They were calling the little boy Retard like it was his name. And they never even said the kid's actual name, and I was listening for it.

So I don't always or usually speak up on matters like this.. but today I did. I said to the kids "Hey, does y'all's Mom let you call him retard?" The main perp didn't say anything. One boy said "It wasn't me who called him retard." He was nice about it, I believe he was telling the truth. And then I said, "Well, it's not really........ appropriate."

And that was it. I am sure the little kid will get called "Retard" again. But my hope is maybe next time one of those kids will stand up for him. Someone will actually think about it.

My thinking on this is: in our society it isn't acceptable to call someone "retard" in an offensive context. So today, I was just one of the should-be-many people to let the boys know this isn't acceptable behavior.

Well, what would you have done ?

American Sign Language

2007-06-05T13:33:00.000-07:00

I am in love with this language! Over a year ago I started learning American Sign Language (ASL) for my son. He couldn't communicate through speech and so his speech therapist started teaching him some simple signs. He picked it up very quickly and so I eagerly signed up for a local ASL class. Now he is doing amazingly well with sign. He signs close to 1000 signs by my best guess, and the sign language is actually helping him with his speech and other issues like his fine motor dyspraxia. He starts with a sign language interpreter at school next month ! Sign Language is amazing, and has been so AMAZING for my son and our family.
I should say that I had prior experience with ASL. When I was in elementary school I had a friend whose sister was Deaf. I saw her and her mother signing one day in the car, they seemed really angry, but I just was in awe, it looked so amazing. I had to learn. So I bought a book with my allowance, it was a signed english book which I know now is a bit different from ASL but the alphabet is the same. I learned the alphabet from that book and some other signs like family, friends, love, dog which are all the same in ASL as in signed English. The main difference between ASL and signed English is grammar. In ASL if you are trying to say "What is your name?" you would sign YOUR NAME WHAT (and raise your eyebrows to indicate a question).. in signed English you would sign WHAT IS YOUR NAME. Many people don't realize that ASL is not based on English- it was actually brought over in the 1800s from France, so my guess is that it's grammar more closely resembles French- but I am not sure. ASL doesn't have words like IS, AM, BE etc. So anyway, after I learned some words on my own, I joined an ASL club after school in middle school. I kept an interest in ASL all the way through until I had my son and actually needed it, I just never actually seriously pursued fluency until I found out I needed to- for Liam. So I do feel that maybe there was a reason I have had this interest, this spark that has kept on throughout my life. Because my little sister was friends with the same neighbor girl whose sister was Deaf, we all played together, but my little sister doesn't even remember that her sister was Deaf and she never took an interest in ASL like me. And we both went to the same summer camp, my brother went too. When Deaf kids went there they never took any interest, when we learned a camp song in sign language, they never took interest. But I did. My little sister didn't care about the sign language club at our school either..I just kept being repeatedly exposed to sign language as a child.. and when I found out I needed it for Liam.. I sort of felt like, Ok, this is why. I was meant to be his mom.
So here I am now. I just got home from my first ASL 3 summer class. I LOVE IT! I am so excited about this class ! My teacher is awesome, she is Deaf herself and just from the first class has already given me so much new stuff to go check out, new vocabulary to work on, new inspiration ! My teacher is the same teacher I had for ASL 2. She rocks the house ! I am a student, and at about 70 credit hours I have to decide on my degree.. I want to study Deaf Ed, Linguistics of ASL and Sociology, I am really excited about this. It will take about 3-4 more years to graduate with my masters.. but that is fine. I am just really happy to have picked my major.. this feels right. So that is all for now, I am off to go check out new stuff for class, buy some books, check out some ASL vlogs on youtube and blogger.... !!

2007-06-03T17:27:00.000-07:00

One of the good things about blogging is that you don't have to guess what life was like a year ago. You can go look it up. I guess that is most of the reason why I am here, because, straight A student aside, my memory is terrible. But I do want to write down in more detail what the past year or so has been like. For now, I will only go into it a little, start thinking about it.. only write a little of what I eventually want to get down on .. err, paper.. so to speak.

A year ago, I was officially thrown into the world of special needs parenting. I feel like I am starting to pull out of that a little bit now. It is hard to explain.. my son is still special, yes. But I am so used to him now that it is suddenly becoming 'normal' to me. I have read other people's special needs parenting blogs lately, now that I have found myself in this strange blogging world- and their special kids seem so much more special to me than my own, not necessarily because their children are more special, they might be less or more disabled (if that is even really possible to measure) but I think it is simply because it is foreign to me. I wonder if other parents, feel this same way .. if their "special needs" children start to feel more like 'normal' as time goes by and they become accustom to their child. Maybe for some.

Anyway, a year ago life was far different. I was not only a newly special needs parent, I was also a newly single parent courtesy of Uncle Sam. My husband was deployed to Afghanistan on February 11th. The first few weeks, I won't lie, I had a cosmopolitan in hand almost every night after the kids were in bed. Don't judge me. March came, and it wasn't much better, though the need for cosmopolitans became less and less. With March came Liam's first diagnoses: Apraxia of speech, developmental dyspraxia, fine-motor dyspraxia, hypotonia. The doctor said Liam's prognosis was good, though he wouldn't answer me if he thought Liam would ever speak. At the time, all I wanted was an answer to that question. Now I know this doctor was probably the best on this front, because no one really can know the answer to that question. Some doctors or therapists since have told me Liam will always need alternative communication like sign language or an augmentative communication device and some have told me he will speak. I don't believe either. No one knows. In this moment, I am not looking for that answer anymore. But who knows when it might creep back up. Now my question for his therapist is," tell me when it is unrealistic to think it possible that he will never speak solely. "

April & May I can't remember much. We started going to church in April. I was in school too and likely I was studying, finishing exams, etc. I got a call from the commander's wife one day, leaving church. She read me a script, and prefaced with, "this might be hard to hear. It is upsetting news." So she read the script, which I don't remember but basically all it said was there was a helicopter crash in the unit and there were casualties in my husband's company. The unconfirmed casualty number was 10.

Wait, uh, WHAT ? 10 ! In one company? And I thought, well, shit, there are only about 20 people per company. All the phones were on lockdown over there, as well as all the computer connections, basically there was no communication between husbands and wives for three. eternally. long. sleepless. days. All of us wives here at home knew that among us were new widows. Most of us spent the next few days crying, praying, pleading, on the phone with each other or at army briefs. There was a sick sort of comfort we gave to each other, because we would say to one another, "It couldn't be your husband, don't worry, it wasn't him," while we really only selfishly hoped our own husband wasn't one of the dead... because, if you talked to everyone in the company, when you saw all of them sitting in the chapel for the briefing, when you really hoped it wasn't all of their husbands, then it would be your own. We felt this guilt as if Hope had some power to change what had already occurred. At some point (and I don't remember at which point) it was cleared up that not all 10 casualties were from my husband's company. I believe the truth turned out to be 4 casualties from my husband's E company and 6 from A company.. all from my husband's unit. (though I will have to ask my husband and possibly edit this later) The structure goes smallest to largest: company, unit, brigade, division. After the 3 loudest silent days on Earth, I finally spoke with him. It was a relief in part. But also a great sad, because he had known all 10 of the fallen men, a few well, some only acquaintances and One. One was his squad leader, someone he respected, admired, One he was close to. I don't know much more than that of their relationship. My husband hasn't ever wanted to speak much more of him than that. He told me he was a dedicated family man, with 4 children and a wife.

A few months later, there were more casualties. Notification was handled a bit better that time around.

Time went on, we went to visit family in Texas, and in Colorado during the summer. My husband still in the mountains of war as we visited the mountains for fun. Things started changing so much with Liam. When Judah (my husband) left.. Liam was still just the little boy with a speech delay. Now he was disabled. After our vacation Liam started school in September for the first time. My husband missed taking Liam to his first day of school. I don't know if he regrets that.. I know I would, had I missed it. We hadn't expected him to attend school so soon, but now that he was diagnosed with disabilities, he would start school early. Monday-Friday in an integrated special ed class, and speech therapy 5 times per week, occupational therapy 3 times per week, physical therapy 2 times per week. I learned techniques for his therapy to implement at home, read books about his challenges, and another language, American Sign Language, while my husband was away, watching Afghani nationals pick up trash. Yeah, thanks Uncle Sam. I need my husband home damn it, his son needs him here, you can find someone else to watch people pick up trash.

Judah made friends with some of the local Afghani's whom he supervised. He says they spoke much of their families, and brought pictures of their wives and children to show to Judah. He says he always treated the Afghani's with respect, and considered them friends. He also says that some of his fellow soldiers did much less. I wish Judah would write about this.. to remember. I enjoy reading his words.....

Sometime in September or October Liam's speech therapist told us about a program in Michigan, a doctor who specialized in his disorder whom we could go visit and have her assess and treat Liam. Dr. Nancy Kaufmann. At this point in Liam's life, he was, non-verbal. No if ands or buts about it.. my little boy couldn't utter a word.. not even really a syllable. He had a few words come and go.. but none thought to stay....

Now this story will have to continue another day, for now, it is Intermission.

Liam the lil comedian..

2007-05-30T10:26:00.001-07:00

Liam has been rapidly increasing his communication lately whether it be through sign, speech approximation or both. As he is able to communicate more he is showing me (and his teachers) a very comical side to himself. His teachers even say he is joking a lot at school with a friend named Jaheim. And on to the story..

We were in the bathroom, I was getting Liam washed up for school, when Liam says out of nowhere "Bu-tttt" and points to his rear. I said something like, "you're a silly" and then Liam said "Tee-Tees" and signed CAT, and then immediately followed with "Buh-Boh" and signed BUBBLE.

And I asked Liam, "Oh, are you trying to tell me that kitties have bubble butts?" Liam replies very enthusiastically (as he always when we really get it) "Nahh!" which in Liam's world means Yes. And we started laughing and Liam kept on saying over and over "Tee-Tees Buh-Boh BU-TTTT"

I don't know where he got the idea that kitties have bubble butts and it didn't connect into anything we were doing at the time. I will probably never know why Liam wanted to tell me that Kitties have bubble butts (or how he figures that) but I do know that according to Liam kitties as a matter of fact have bubble butts.

I want to give this to you

2007-04-17T20:18:00.001-07:00

cup this in your hand boy
hold it tight
I want you to keep this
forever
this is my truth
for you

despite all the tears
despite all the effort
despite how everyone
wants to change you
to take you, the little mute boy
and mold you, into the 'normal' boy
just remember this
despite it all
this,
this song is my truth for you

I hope you know that God and nature made you perfect
JUST THE WAY YOU ARE
I hope you know that God and nature made you good enough
JUST THE WAY YOU ARE
I hope you know your daddy (& mommy) loves you
JUST FOR WHO YOU ARE
I hope you know that God and nature made you a bright shining star

(lyrics to 'Vanessa' by Fifteen)
thank you thank you Jeff Ott for giving this wonderful amazing truth full of beauty for anyone to hold on to.

Happy

2007-04-17T19:20:00.000-07:00

Liam taught himself to say "Happy" he has been running around the house repeating "haa-pee, hah-pee, haa-pee" When he says a word he repeats it over and over and over. I think he is trying to train his brain.. or keep himself from "forgetting" how to say that word. With his disorder.. he might say a word once, or a few times, and then not be able to. Or he might say a word and then you ask him to say it again, he tries, but he can't. He moves his mouth all around, makes painful looking faces but can't get it out. He has busted out with entire sentences before. When he was 3, he was watching Star Trek with his Dad, and one of the guys was about to hit one of the otherTrekie dudes.. and Liam busted out and said clear as day
"Oh no !!! Don't do that ! "

But, happy. I love that he wanted to say that word. Happy ! It's a good word to be saying.
I think maybe I am getting into a more positive place with Liam's difficulties.

Lately he has been exploding with new words. And he is able to "keep" them. He can say..

Hi, Mom, Hello, Dad, Me, I, Help...

And he can approximate even more.. Juice, Orange, Elliot, Kitty, Potty, Bye-Bye, Please, Eat... there are more.

And he is learning more signs each and every day. In American Sign Language he does over 500 signs now.

turns out

2007-03-30T11:04:00.000-07:00

that i wast just agonizing over nothing because i went to the meeting and now Liam is going to have a sign language interpreter at school with him which is what i felt was needed.

and to clear any misconceptions up.. this blog, is meant for me. and meant privately. and in fact i think i may have set it to private. but if you're reading this then i suppose it might not be at the moment.
but what this blog really is about.. is me being able to compartmentalize all the negative feelings and all the pain i have for my son Liam and all of his trials.. because i try not to show any of this pain to him..

Tomorrow is the day that will change his life forever.

2007-03-27T20:25:00.000-07:00

I have been waiting. It's been cloudy, it's been foggy. Tomorrow the fog will lift. I think it's been foggy two weeks. I don't know. It seems like years. Every day since I knew tomorrow would come- it has consumed my every thought. Almost. I tried writing it down, I tried eating it up, I tried giving it away. This thick cloud of warm, cold, salty fog will not leave me alone. It's sitting in front of me constantly, following me around. Sometimes it goes inside my stomach, my back, my head. Sometimes it just sits in front of me. The fog has the thoughts. And it won't stop following me every place I go. Even into the shower, in the car, while cooking, and worst- while I try to sleep. The information in the fog can fit into about 4 pages typed size 10 Arial. I know because I typed it out. I thought I could move the fog from me to paper. It didn't work, well, exactly. It is still in my mind constantly- what to say, how to say it, what they might say and then what I will say back. I know that I will get in there. I will get intimidated. I will forget what I wanted to say. I will forget everything. And I will just give in. I won't do what is best for him. That was part of the fog. So I have been trying to avoid forgetting what is so important, for him. So maybe I created the fog, but I can't get rid of it or running it through my mind in non-stop feed. Breathing it in, running my fingers through it, molding it, pulling it out, and pulling it in. So I created the fog, But unintentionaly. I mostly wanted it to go away, but it wouldn't. Sometimes the fog was louder. Sometimes it blasted bad music that you never liked. Sometimes it was calm, sweet, the music that makes you cry, lightly. No one else can see the fog. I tried giving it away. But it is only mine. Now I have put the fog down on paper. It's still fog, but I've got it pinned down now. And I will have that paper in the tiny room with me. My armor. My protection, from myself and them. To help me remember.

Tomorrow is the day that will change his life forever. We will sit down, and decide what method of alternative communication my 4 year old mute little boy will start using at school. I won't go into if this will be forever or if he will ever speak. He can hear. He can't speak. and I don't know if he will. I am not attaching a 'probably' or a 'slim chance' or any other descriptive like that for defining his future. Though some professionals have- and they have conflicted in their theories.. But they don't know. I'm not sure if even God knows yet. And so I am not going to go there.
But this day, this day, this day is huge.

My life is living this song, No Other Way (Jack Johnson)

When your mind is a mess
So is mine
I cant sleep
Cause it hurts when I think
My thoughts aren't at peace
With the plans that we make
Chances we take
They're, not yours and not mine
There's waves that can break
All the words that we say
And the words that we mean
Words can fall short
Can't see the unseen
Cause the world is awake
For some body's sake now, please close your eyes woman
Please get some sleep

And know that if I knew
All of the answers I would
Not hold them from you'd
Know all the things that I'd know
We told each other, there is no other way

Well too much silence can be misleading
You're drifting I can hear it in the way that your breathing
We don't really need to find reason
Cause out the same door that it came well its leaving its leaving
Leaving like a day that's done and part of a season
Resolve is just a concept that's as dead as the leaves
But at least we can sleep, its all that we need
When we wake we will find
Our minds will be free to go to sleep

And know that if I knew
All of the answers I would
Not hold them from you'd
Know all the things that I'd know
We told each other, there is no other way

And the chances we take ? What are those ? I didn't think you would really want to know. The choices: American Sign Language interpreter or AAC device (speech synthesizer). We've made our choice. Now we have to stand up for it. I've got my armor, my paper, my words.

In My Language

2007-03-25T19:59:00.001-07:00

Watch this all the way to the end. Amazing.

poem

2007-02-23T08:07:00.000-08:00

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.)