Friday, September 30, 2005

Joshua is two.

Sometimes I'm so focused on Josh and his therapy, receptive and expressive language development, speech progress, etc., that I forget he's also two years old. He is such a stubborn little boys sometimes! I am trying to keep him up today so he will go to sleep early tonight, and my cranky two year old isn't listening to me any more! I even checked to see if his CI was still turned on, working, volume and sensitivity in the right places. He just ignores me. I say the word "candy", and he turns around immediately, signs "candy" and vocalizes, "ah ee". Yes, little guy, you CAN hear me!!!!! Now you're just not LISTENING!

I find he LOVES doing therapy at home now, but I have to make sure I capitalize on his energy early in the day. And if I work with him early on, it follows through the entire day.

Routine: boys wake up, get them dressed, CIs on, fed, Matt off to school. Then some reading and therapy time with Josh and Chris (my helper). Then some free play while I suck down a cup of java (okay, for those of you who know me, I'm back on the bean. At least it's organic beans...). Then throughout the day I try to use ideas I've learned from the Learn to Talk Around the Clock seminar I went to. I really, really want to buy that program. Then Chris to school in the p.m. That's usually when I try to get Jsoh down for a nap. Then pick up Chris, then Matt comes home on the bus. I TRY to do some more therapy with all three of them after school. I kind of have to judge where they're at, how they're feeling and acting to figure out what we can do. If the three of them don't work out together, I just hang with Josh and do some concentrated "Talk Around the Clock" communication with him. Like prop him up on the stool and talk to him about cooking dinner, what I'm doing. Have him participate even if just stirring.

On Josh's school days it's pretty much the same, except when Matt leaves on the bus, I immediately take Chris and Josh to Josh's school. Chris is a hearing peer right now, doing very well, too! Then I have some Mommy time (BIG WHOO HOO!), pick up the kids and head home. Soon Josh will be bussed there five days a week, all day. I think he'll do very well. Two days a week with Chris there seems to be working out as a good transition. Josh hasn't fussed once, missing me.

Okay, Josh's playing on his own downstairs now. I need to go check on him. He absolutely LOVES playing with the trains down there. I want to paint the wall behind his train table like a scene from Thomas the Tank Engine. I could include pictures of some of his better vocalized words: moon, ball, cat, tree, etc. Tie them into the mural. :)

I'm so proud of Matt!

Matt won his "spelling bee" last week, and he has another today. Now that we're working on spelling, I'm finding which letters he really doesn't hear as well. When I see how he perceives certain words, it's like an "Ah ha!" moment to me. But then I'm also shocked at how far he's come, too.

Okay, why am I proud of Matt? The spelling bee, yes, but moreso because he has really adapted well here. He is just now seven, and this is his sixth school. Last night was the first meeting for Cub Scouts, and he's in a group with maybe 12 kids from his mainstream 2nd grade class. My husband said that when they were asked to pair off, three other kids were fighting to be Matt's partner! I think the school, teachers and families have really made a great effort to bring him into the community here, but I also think Matt is very well adjusted, has a great self image, too. And I think folks notice that. He has hurdles to overcome, but he works so hard with such a great attitude! Try and try again, he says. :)

Josh is doing well at school, too. He went through a very rough spell last weekend, but after the rain front moved through (remnant of Hurricane Rita), he woke up the next morning in the most chatty mood! Night and day difference, literally. I'll write more about that later, but I think, no, I really believe his vestibular system can get messed up with allergy problems, big pressure changes in the atmosphere, etc. I have no research on this, just two boys that I've watched through the years. I pointed this out to Matt's teachers early on. I don't think they believed me at first, either, but then they watched him and would be shocked. I have no problem admitting I'm a Bonkers Mommy, but I really keep good observations of the boys, too. Journaling here has helped me sort out some things, too.

Okay, back to Josh. I don't have the communication sheet in front of me, but I think the teacher said his is age appropriate in play, and was trying all day to imitate her communication. Yes, with sign right now, but they are strongly encouraging his speech, too. First, I think he just needs to get comfortable, get in a routine at the school. Then maybe work on the specifics of his speech? I need to read that sheet better. I like hearing how he's at least initiating conversatin now, too. I LOVE Josh's teacher! Just the little I've seen of her, she is amazing with the kids. Funny, but she was talking to Josh with the same voice, expressions as what might be used with the Learn to Talk Around the Clock materials. Really communicating with Josh on his level. She seems so patient, too. We are thankful to have such good schools for the boys.

I want to look into PROMPT therapy for Josh. I don't know if insurance will pay for it, and we're not in the public school program, either. But if it helps him, I'd have to find a way to pay out of pocket. I've heard some good anecdotal stories about it from other families, other children with apraxia. Can't hurt to at least have him looked at, see what a therapist might have to say.

Ugh. Have to clean the house. Believe it or not, Josh actually helps, and he's not even three yet. Yes, I train my boys young, with hopes they will still help me when they're older. :)

Monday, September 26, 2005

The Other Brother

A family member recently asked me about Chris, and suggested I don't let him get lost in the deaf/hoh program with Josh. That Chris needs his own group of friends, too. I agree wholeheartedly, whether or not he was a hearing peer in a deaf/hoh group or not. I'm thrilled he can be a hearing peer with Josh's class two days a week, this has been good for everyone, I think. But I'm also happy that he's in his own class the other three days a week. And when Josh turns three, I think Josh will go to his school alone, and Chris to his own class, too.

I've been trying to type so much about the CI boys and our CI journey, that I sometimes forget to journal about "The Other Brother", too. I was pregnant with Chris when Matt was diagnosed deaf. Once Matt was settled in school and doing very well, Josh was born and diagnosed with his hearing loss. So Chris really has been around and seen everything.

I have been very conscious of this. After Chris was born, things got so rough with Matt that I didn't really get to focus on Chris until Matt was in school. Chris finally started to sleep throughout the night when Matt started his three months of vestibular problems. My hubby and I had to take turns sleeping with him at one point, keeping him sitting up while sleeping. I was thrilled when those problems seemed to go away, we could finally get some sleep ourselves. And as hard as it was to put Matt on a bus one hour each way for school, I was finally able to spend some concentrated time with just Chris.

When Hubby had to go to Iraq for a year, things were tough at home again. Matt was so easy at this point, I hardly remember what happened with him. But Josh had the severe balance/vestibular problems, and I had to spend a lot of time with him and his "therapy" again. And then he finally had his surgery, all while Daddy was in Iraq. And then therapy, four kinds, four days a week. Chris has seen and lived through it all, too.

I don't think things have really been too bad for Chris. I wish he could have had a more "typical" early childhood, "playdates" with friends, maybe classes of his own. I did get him signed up for Little Tyke soccer and T-Ball, and he had a blast. We've discovered that he is very bright, but also quite a little jock, too. And now that we're in a new home, and things are settling down, I try to spend a little time each day with just Chris, too. Whether it's reading a book, playing Star Wars (Legos version) on the X-Box, or just reading a book with him. But I've had to specifically set aside time for him, so he doesn't get lost between his two brothers. We're also going to get together with moms and kids from HIS pre-K class every Friday morning, so he can develop stronger friendships with other kids, too.

Having deaf brothers is going to be a great portion of what shapes Chris' young life, and will be what helps mold him in the future, too. Deaf or hearing, each child is very special to me. I feel very overwhelmed at times with three children, I don't know how moms of more keep things together. (smile)

Wednesday, September 21, 2005

Yeah! Matt made the bus!

Okay, all the heavy talk about therapy. While typing the last post, my husband called and when I went to get the phone, I realized what time it was. I had forgotten the clock on the computer is running slowly, due to processor problems. OH MY GOSH, MATT'S BUS WAS COMING IN TWO MINUTES! Of course I figured I'd never have him outside in time, that I'd be driving the boys to drop Matt off at school.

Well, I hung up on my husband, more like slammed the phone down on him, whipped up the stairs, grabbed Matt's CI, threw it on him, turned it on and yelled, "MATT, YOUR BUS IS COMING RIGHT NOW! GET UP!" Didn't I do something like that last week? But this time I really made sure he knew I meant business. He threw his clothes on, I grabbed a juice box and couple of cereal bars (bad mom, but at least he got something in his tummy), shoved his books in his bag (thank GOD we did the homework right after school yesterday), and kicked him out the door. Believe it or not, the other two kids were dressed, too! All in less than three minutes. Thankfully the bus was a few minutes late, and Matt should be sitting happy in class right now. Yeah!

I think the bus would stop at our house, but today he was standing at the corner a few doors down. I was able to yell to him, and he back to me, to see if we forgot anything. I'm sure the neighbors think I'm bonkers, but hey! I was able to yell at my kid three yards away, and he understood! Not a shining CI moment, but one for which I'm happy about! :)

Meanwhile, Josh is telling me he's hungry. Chris is thirsty. Life goes on.

Okay, on a different note, not just about my boys. I've been active again on some CI forums, and answering some personal e-mail about children with CIs and CI candidates. I'm no expert, but I'm thrilled to share our experiences if they can help someone else. I also find a lot of support and information on the different CI forums, too. The biggest thing I've learned from others and in my own family, is that each child is very unique. In their history, skills, abilities, strengths and weaknesses. I can't stress this enough. What works for one child and family may not work for another. But through support of others we can learn what has worked for others and new things that may help us, too.

Okay, something else. Very important. I can't stress enough how important post CI "therapy" is. I don't care what works for a specific child or family, but it is very important for the family to work as a team with the therapists and their child on a daily basis. Around the clock. Maybe that's why I liked Karen Rossi's presentation so much. The cochlear implant is an amazing opportunity for many deaf children. Some kids are able to jump immediately into the world of sound. The progress may be slower, much slower for others. It has been quick for Matt, much slower for Josh. But I am encouraged by his continual progress, even if it is slow at times. It helps to keep a journal of even the smallest bits of progress. Then I can look back and say, WOW! Look how far he's come in a year! I wonder what he'll be doing next year! In our case, next year, or maybe a few more years later, I'll be missing the more quiet days, ha ha! But we keep plugging along, being thankful for those little blessings we see. It really helps to have support of other parents sometimes, to know we aren't going through this journey alone. :)

Talk Around the Clock

I just heard an amazing presentation by Karen Rossi, M.A., Teacher of the Deaf and Hard of Hearing, Early Intervention Specialist. If that isn't enough, I think she's the Principal or Executive Director of the Omaha Hearing School, an oral based program, has 33 years of teaching experience, and she was just amazing! Information on her program can be found at: www.learntotalkaroundtheclock.com .

To sum it up, the program is designed help early intervention specialists to teach PARENTS how to teach their own children. There was outlined a hierarchy of communication behaviors and language skills that the parent could learn to use with their child. And throughout the whole program there are amazing ideas of how to incorporate these lessons into every day life.

Now, I would automatically think this would come naturally to a very involved parent of post CI children. Uh-uh. I could use all of the training I can get in this area. The day after the program, I used some of the ideas and activities I learned about with Josh, and immediately started getting "back and forth" communication responses from him. I may have been getting them before, but just wasn't paying attention to his "communication behavior". Having her point our certain things during the presentation really gave me the tools to better assess where Josh is at, how to help him move forward. We've been "talking" all this week, too, back and forth communication. It's like I'm finally plugging in to his wavelength or something.

Karen Rossi stated up front that her experience is with Oral Education, and that's where she was coming from in her approach. But I find that her program would work very well with our son who uses some sign, too. Josh seems to have some sort of motor processing delay, mostly output, and we've found he communicates much easier with sign. I don't know what label an expert would put on him, maybe five different people would give us five different titles for his delays. But the signing is actually giving form to his language, getting him comfortable with new vocabulary, and almost pulls him into oral communication, too. I think the more comfortable he feels with his communication skills, the more freely he vocalizes for things he wants, sees, feels. Pretty cool!

That said, I'll be honest. I've been pumping what language and vocabulary I can into Josh. But after listening to Ms. Rossi I feel much better about finding where Josh actually falls on a communication scale of sorts, and how to work with him in meaningful communication. I think I've finally made a connection with him, one that's been missing between us, even after all the different therapies he's had. Maybe because after this move we've actually not been able to rely on our EXCELLENT therapists back at our old home, and I've been forced to do more on my own. And I've had more time, too. I'm always willing to try something new, and I would highly recommend "Learn to Talk Around the Clock". If we aren't using it here, I'm just going to buy the program myself. I think it would work very well with the "Listening for Littles" program I just bought, too. Yes, I'm actually using activities from the program. Love it!!! :)

Okay, I need to get on with the day!

Thursday, September 15, 2005

I am shocked.

I am shocked that Matt has been to six schools now, and is adjusting so well this year. He is essentially attending mainstream classes at his school, as well as taking lessons with his deaf/hoh group. That kid is a trooper. Watching him love school makes all of the doctor and therapy visits worthwhile. I think sometimes I feel so burned out with everything we have to do, I just wonder WHY I'm running around is circles so much! But it's days like yesterday, the Welcome Back to School night, that make me realize we've made good choices for our family, and encourage me to keep plugging along.

I have to keep plugging along with Josh, now. He'll start classes at his new school next week. I think, if they'll let us, I'll have Chris in there with him. Josh will be in a small group, and it's very possible he'll do better with Chris around. I've found that to be true at home. Josh likes to do what other kids do. He'll watch Chris, and try to sign, talk, whatever just like Chris. Pretty cool.

Okay, I need to go get kiddos from school now. :)

Tuesday, September 13, 2005

Time is running slowly. And, "My Normie".

Literally, on my computer. The hard drive is not processing very quickly these days, and this is even affecting my computer clock. I was checking my email this morning, thought it was 6:38 a.m. Then I got up to check on Chris and Josh who were blissfully watching a Scholastic video and OH MY GOSH, it was 7:18 a.m. instead!!!!! I had to rush Matt out of bed, get him fed and dressed and on the bus to school in less than 30 minutes! Not an easy job, Matt does not like getting up in the mornings. So I hooked his CI up, put it on his head, turned it on and told him, "Wake up now! The bus is almost here!" Well, it wasn't, but it was the only way I saw to get him moving! :)

Matt loves school this year. He is mainstreamed most of the day in his school, and does his language/spelling/etc. in the deaf/hoh classroom. He is in an oral group, and is doing very well. Matt just started in the mainstream class yesterday, and I was told that he fit right in. On Friday the teacher brought her class to Matt's deaf/hoh classroom and introduced them to the other children. Then they went back to their class and made cards to welcome Matt. He got them yesterday and brought them home to show us. I read every single one and almost cried the whole time. We've just moved all over the country and already feel more at home here with these schools than we did in most other places we've been.

Josh will start with his TC class next week. He will be going two days a week until he is three, I guess. I am THRILLED that he will be in a classroom with the teachers, other kids. I've done so much therapy at home with him, but I've noticed that he does much better with "therapy" if Matt and Chris are helping me, too. Josh would much rather hang out with the other boys than be doing something alone with Mommy. I think he's going to love school.

Chris is in the half day Pre-K class in Matt's school, but will come with Josh on Thursdays, maybe. I really wanted him to be a hearing peer in the class both days, this would be easiest for me with transporting the kids. But he is already bonding with kids his own age and doesn't want to be apart from them to follow me everywhere. So one morning a week he will be at a friends house before school while I drive Josh to his class, and I'll take Chris with me the other morning. I am firmly committed to the idea of hearing peers in a deaf/hoh classroom whether it's TC or Oral. I have seen how much of a blessing Chris has been to Matt (CONSTANT opportunity to use his speech) and Josh (a good example for him, too). And Chris doesn't realize it now, he's only four, but he has developed a special character just by living with and understanding his CI brothers and their struggles. Chris is a cool kid.

I thought about naming this post, "Schizophrenic School Week". It's been a little crazy around here, figuring out everyone's schedule, papers flying everywhere. My computer is usually my lifeline, and it's been acting crazy, too. Ugh. I keep telling myself to keep plugging away, it will all work out. :)

Oh! Oh! Oh! I finally DID receive, "Listening for Littles", and LOVE IT. I am so thankful that Josh's last therapist was using that program with him. It cost $80, came from Canada, and I think our last Early Intervention program would have covered it for us, but I don't mind paying for it. Even the pictures are cute and catch Josh's attention. The book and CD are very well laid out, fun exercise ideas with the "props" ready for printing out or copying. And the beginning of the book is full of information on communication development. I would recommend this program for any young CI child. I'll bring it to Josh's school, too.

I can't wait to meet the new Speech Path. I've been wanting to see what they know about Prompt therapy. The folks I've already spoken with seem very open to parental input and working with each child on an individual level. I know that's how every school system is supposed to be, but that doesn't realistically happen in many places. Matt is 7 and is in his 6th school already. I've seen many different schools and programs, and feel very fortunate that our kids get to attend their current schools. Something I've always told other parents, keep your eyes and options open for your child. You may find exactly what you and your children need in a place you least expect it. :)

Okay, about that word "normie". I'm guessing someone may be offended by that word. That is just our term for Chris. Not meaning he's normal and the others aren't. What am I supposed to call him? "Here are my two deaf kids with CIs and Chris, Boy with Selective Listening." Or, "This is Matt and Josh, my two deaf boys with cochlear implants, and Chris, He's Not Deaf." I mean, seriously, if I don't tell folks right up front about my boys, I find they just look at the boys and wonder what "that thing on their head" is. Very few people just outright ask what's on the boys' heads. And Matt is fitting in with kids so well most don't even believe he's deaf. They figure it's the other two boys. I then explain that no, the younger one is deaf, the CI is just hidden by his long, curly blonde, Hippy Hair. And don't you ever think I'm going to let his hair be chopped, either, ha ha! The other child, Chris, is not deaf, he just doesn't listen (grin). I get the same response all the time, from other parents mostly, "OH! So he's just like every other normal four year old!" Uh, yup. He's my "Normie".

Ugh, I have an appointment this morning, need to get moving. Next time maybe I'll talk a little more about "Silly Answers to Silly Questions." Honestly, I'm thrilled when people ask questions about my boys, and I sure like to talk about them, too. I like to explain how the boys are deaf, "100% deaf?" Yes, stone cold deaf. But how the wonderful CI technology can give them access to even more input than they may have otherwise. The technology truly fascinates me, always will.

OH! OH! We finally bought a T-mic for Matt! I think his CI may be programmed to use it, but I'm not sure about that. I hope so. We need to try it soon. Regardless, he has his 4 year post CI check up coming soon. We could take care of that then, if needed. Matt is great at trying new things. He likes to talk on the phone to other family members, and I am excited to think about how much easier that will be with his T-mic. Yeah!