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.

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 !

books books books

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..

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

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.... !!

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..

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.