Mommy Thoughts, and "I love you." :)

Okay, I LOVE my boys. I'm working hard to do what's best for them. But sometimes they do drive me bonkers. I've been blessed with excellent hearing, but can't turn my volume or sensitivity down when their little voices are grating on my last nerve. BUT, I CAN USE EARPLUGS! Seriously. I have a blood pressure cuff to monitor my blood pressure, and I have actually noticed that when they boys are bugging me and I use the earplugs, my pressure actually stays lower! I can still hear the boys when they need something, and I keep a close eye on them at all times, but their cute little voices don't bother me as much when they're muffled by the plugs. Go figure. :)

While Josh's progress may be slow, it is a bonus to see him still progressing forward in his language development. He doesn't wear his CI to bed (Matt does at times), so I sign more with him then. Last night I signed "I love you." and he held his hand up and vocalized "I uh oo" back to me. Yeah! He is trying to use his voice much more now, and that's encouraging. Once he's more comfortable and consistent, I'll start picking on the more fine details.

Oh! And last night he was having a rough time so we took a little walk outside. We've been working on using two words together at a time, instead of just labeling things. So we had to say, "Night night tree." and "Bye bye light." at least 50 times each. But he was so excited! He would "Walk walk walk", spot another three and point to it and start squealing! And he spotted airplanes passing overhead and would point and vocalize bye bye. Pretty cool.

His language is coming along better now. He's understanding and identifying colors, red is his favorite. He is using two words together now, like "cat food/eat". He understands more words receptively, sentences, but I'm talking about him expressively, too.

Ooops, gotta go. Will finish later.

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. :)

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)

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!

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. :)