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. :)

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!

What Joshua's "Saying" Now

Hi, again! I can't believe I've been able to get to the computer so much today! The boys are behaving very well, and I'm able to catch up on a few things.

I thought I'd share a little about Josh's progress. When Matt was implanted, he had a little more hearing and speech history, he did very well with his CI right away. Well, Josh is doing very well, too, just taking a little longer to reach some milestones. I'm always amazed at how unique each child is, even in the same family! Josh is doing VERY well with his hearing/receptive skills. He is identifying words by pointing to pictures, and is picking up new words much more quickly now. He is following directions, "Put the apple on the table." "Sit down on the chair." "Come inside, close the door.", etc. much better now, too. Oral, without me signing at all. We play with doll house toys, good language builders, too. "Put the Mommy on the chair." "Put the dog in the boat." So while his receptive language is progressing, I've had to put some extra effort into his expressive language.

"The Boys" did some "therapy" with me this morning. I'm not going to lie, I use mini-M&M's to bribe them sometimes. I'll say, "Matt, the cow says, 'Moooooo'." Matt says, "Mooooo". Then I do that with Chris, then Josh. And he does it! He does much better, tries things he wouldn't otherwise, because he wants to be just like his brothers! That's good now, hope it doesn't get him in trouble later. :) After they each do it well, they get a mini-M&M sometimes. I might not win any Good Mommy awards, but candy is a very good motivator in this case. And someone pointed out that brushing teeth is a good oral motor "therapy", too, ha ha!

Back to Josh. He is vocalizing in his therapy so well now it surprises me! Maybe not as great as some kids may do, but he's made some very big personal strides lately. He's doing mostly vowel sounds right now, but it's the right vowel sound, right pattern, etc. I think it's harder for him to say some sounds, though, like "ooooo", because of his lower muscle tone. It takes some good oral motor skills and muscles for the mouth to make the right shape. But it's amazing to watch as he gets stronger in his arms and legs, even walking up and down stairs, I watch him get stronger in his oral motor skills, too! I would have never imagined how those would go hand in hand for Josh w/o all of his prior therapies.

Here's an example of some Josh's vocalizations: Daddy = "ah-ee", I love you. = "I-uh-ouh.", up up up = "ub ub ub", ow="ow", down = ooooww, apple="ab-oh", water="wa-uh", candy="ah-ee", please="eeeee", milk="muh", go="mbo", stop="mah" or "ahp", bye bye=half of the time "muh muh"& half of the time "buh bye".

He does a few of these spontaneous, w/o any prompting, but he does need prompting for some of it, too. I'm very excited to be writing about this, though, because sometimes I work so hard with him I forget how far he's actually come. I think these skills were just emerging when we were leaving WA for PA, I can't remember exactly. But they're very consistent now. Some days better than others. I get very frustrated sometimes, I want to see more with him, but when I remember how far he's come, that only by the grace of God and his CI (grin) he can hear, I am amazed. Matt's speech success seemed much quicker, I can't remember. Josh's had more vestibular problems/issues, but he is really doing well. Such a good trooper!

It's also kind of funny how hard I've worked to help them talk, and then I just want them to be quiet! Maybe that's just me, maybe it's a mommy thing. :) Seriously, Matt talks ALL the time. Never stops asking questions now. He's reading chapter books now, thank goodness! A little more quiet. Seriously, I didn't mind signing with him, but I'm also thrilled with how well he's done with his CI and speech. That's what motivates me to keep working with Josh most days, seeing Matt and how well he's doing.

Well, I'm on the second floor and can hear them fighting in the basement now. Over legos. The funniest thing right now is that Matt is VERY CLEARLY telling Chris how things are, and Chris, my very well spoken little boy is prone to just screaming back at Matt. I am constantly reminding Chris, "Use your words!" Ugh, never stops... :)

Wow! It's been a busy summer!

Well, I just re-read my last post and realized how long it's been since I wrote about the boys! I was writing about Josh having been identified with a hearing loss at birth. Thank goodness for newborn screening, we didn't have that luxury with Matt.

We were only in our new town home for six months or so after Joshua was born. In that time he was identified with a severe to profound hearing loss in both ears, immediately fit with hearing aids.

There was a "salesman" attempting to sell a new piece of equipment to test newborn hearing, so the clinic called me and asked if I wouldn't mind having it tried out on Josh. He was about a month and a half old and I kept him awake for most of a day so he would sleep through the testing. He did a great job! The man put two earmuff things on his ears to pump sound in, and attached electrodes to measure response. Apparently the machine was designed to test both ears at once, at different frequencies. Pretty cool! We were able to show a severe to profound hearing loss in both ears, and very little if any response in the high frequency range. We suspected at that time, later confirmed by CT and MRI, that Josh had malformed cochleas like his brother. Because of this we ordered hearing aids for Josh that could transpose the high frequency input to lower frequency that he may better understand.

Josh did very well with hearing aids for a while. He was a large baby with a large head and ears. We had no problems keeping his hearing aids on, until he was about 8 months old and he started tearing them off on his own. I'm stubborn though, and made sure they stayed in/on his ears. Once we moved to the next home (due to Daddy's job), we immediately started the pre-CI process, to see if he'd be a good candidate.

Josh's ears complicated things a bit, though, as he had massive, horrible ear infections. These greatly affected his balance. He finally had tubes put in both ears at 14 months old, and was finally implanted at 17 months old. He recovered from his CI surgery much better than we ever would have expected and was crawling around the home the next day!

Josh's had his CI for 15 months now, and has been through aural/oral therapy, communication therapy, PT and motor skills therapy. He was a late walker, not moving around on his own much until 22.5 months old. That was 10 months ago, and now he's running around like a little maniac, and climbing everything in site. You think I'd be loosing more weight chasing the three boys around town! I have found it very interesting to watch how his communication skills progress almost parallel to his motor skills abilities.

We have now settled in yet a new home, and I'm very excited that school is starting soon. Matt will be attending mainstream classes, and an an oral deaf/hoh group. He was fully mainstreamed in first grade last year, with a Phonak FM system, and did very well. He will be mainstreamed in the parish school, second grade this year. I think he'd like to be around other CI peers more, though, and I've asked if we could work that into his schedule, too. I absolutely love everything I've heard and learned about the school, can't wait for him to start there.

Chris will be in the pre-K program, same school as Matt, and may possibly be a "hearing peer", too. We've talked about this, and I'm very excited about that possibility for all of us. Chris is already constantly with his two CI brothers, I think he'd learn from the class, as well as be an excellent hearing peer for the oral students. Matt had "normal speech pattern" peers in some of his classes, and I think they were very beneficial additions to the groups.

I've been doing therapy with Josh at home pretty much every day, throughout the day. There are a TON of everyday activities to incorporate into speech/listening/communication "therapy". In our case I believe Early Intervention has been more to teach ME how to teach Josh at home, rather than pure therapy for Josh. We had WONDERFUL teachers and therapists back at our old place, and have been filling the time during the move with good practice for Josh. Just in the last few weeks Josh's skills have exploded, too! I've ordered "Listening for Littles", a great program we used back at our old locale, and can't wait to get it now. Once school starts Josh will also be involved in an Early Intervention program, and will be able to see their speech pathologist, too.

Well, it's been an interesting summer. Matt is already making friends in his new neighborhood. Most of the kids just ask about that thing on his head (headpiece), and then it never comes up again. I think most of us just forget he's deaf at times, a lot of the time, actually. Josh's vocalization is getting better every day, too. His last EEG was clear. It's my mommy hunch that he's had some vestibular problems, similar to what Matt went through at the same age. Josh's a trouper, though, and we're very blessed that he keeps progressing in his communication. Matt and Chris will sit with Josh and me when we do our daily "speech therapy"! I try to do them early because that really seems to give Josh a boost for the rest of the day. Josh really LOVES to sit and do therapy when his big brothers are participating, too. Matt is a pro after going through all of this himslef, and Chris is already a pro having been through most of Josh's therapy with me, too.

I need to catch up on my photos and post some from our long trip. My family has been bugging me to update the blog with recent happenings, and photos, too. I'll try doing that later today. Hope you're having a good end-of-summer day, too! :)