IEP goals and other random facts

Crew had his annual IEP last Friday! I feel quite good about his IEP team. The PT and OT were there, audiology, speech, special education teacher, and a representative from our home school district. Everyone seems to have Crew's best interest in mind. Creating goals and finding the best fit can be a challenge as each year creates a larger span between him and his peers.

I hate putting it in writing but part of being real is facing the facts... Crew is testing 1 year 9 months in language! This score included sign, verbal, eye gaze, and eyebrow movement as language response.

Crew will be SIX in a few weeks.

*sinking heart*

The school audiologist had another scare for us. At the most recent hearing test, results showed a profound loss in Crew's right ear which means he basically did not respond.

*gulp* and *breathe*

When this was brought to my attention I tried to joke around a bit... "I've been talking in the wrong ear", I said. It wasn't funny.

On a positive note, there is a good chance Crew just wasn't in the mood to be tested. He may have been ignoring the sounds, just because. Sometimes Crew folds in half or shuts down when he isn't happy about something. I'm thinking this is probably what happened but there is always the fear that his hearing loss will continue to progress. More tests will be done again soon.

We elected to keep Crew in the deaf school for another year. I will post his 2010 goals here later this week.

The Deaf School.. following your GUT

My tour of the deaf school last Wednesday went well. Carl and I actually feel pretty good about it. At this point, we figure we may as well give it a try because if we don't we will never know...

Crew has attended the preschool with our district for two years now. He has made some good strides but nothing significant. We are still struggling to communicate with him. This past Christmas we received the entire "Signing Time" collection and believe it or not his ASL has taken off.

I was able to observe all three deaf preschool classrooms together for "large group" activity. It was fun to watch the kids interact with each other. Most of the kids have hearing aids or cochlear implants. Many of them have glasses and a few were in wheelchairs. It didn't matter. The kids seemed to all be friends. They interacted well. They communicated with each other. I saw happy happy, smiling, giggling children.

Sometimes when I think about the strides we've made in the last 6 weeks I get kind of choked up. It's my greatest desire to see Crew communicate. And while the thoughts of having him away from home for such a long day make my heart sink, I hold out HOPE that this change will be a good one. We only want what is best for Crew. With that in mind, I made the phone call today that will set this transition into motion.

There is that parental instinct when you decide to do something you never thought you would do. I call it parenting through your GUT. Not that I haven't spent a lot of time on my knees though.

Have you ever made a decision "in the best interest of your child" that you never thought you would make? How did it turn out?

Reading Between The Lines

A conversation with Crew's preschool teacher:

Miss K: I'm just calling to see how Crew is doing?

Me: Oh, he's good. Why... did he have a bad day at school today?

Miss K: I just wondered if he wasn't feeling well and/or if he was tired?

Me: Well, he did fall asleep on the bus ride home.... maybe he was tired.

Miss K: When he got to the classroom he just layed on the floor for like 10 minutes. When Clark (deaf therapist) came in and started signing to him he livened up a lot and they started signing to each other. Clark asked him if he was "tired" and (blah blah blah blah blah)... rubbed at his ear....(blah blah blah). I'm trying to learn 3 or 4 new signs a week and use them with Crew. (blah blah blah).

Can you imagine functioning in an environment where your teacher only knows a handful of signs and that is your main form of communication? Can you imagine the frustration, the boredom?

After last weeks IEP, Carl and I have decided its time to take a long hard look at enrolling Crew in the Deaf School. We've decided to take a tour of the school and meet the teachers. Tomorrow I will make that call.

Eyes and Ears update.

Our Ophthalmology appointment today went quite well. I remembered to walk the halls with Crew instead of sitting in the waiting room (which he hates) and surprisingly he was still happy when we got into our room. The Dr. said he had never seen him so happy and I explained the waiting room drama.

Dr. reported that he will look out of his right eye if his left eye is covered but as soon as he uncovers the left his righty turns in. Crew will be having eye surgery again in another month. He also mentioned that if he needed tubes in his ears we could schedule that for the same time eliminating a second sedation.

We called ENT and they were able to squeeze us in at that time. Seeing ENT at the Childrens Hospital is a first for us but it will be worth it. Sure enough the ENT confirmed that he does need to get another set of tubes so we will be doing that at the same time as the eye surgery.

I asked about getting an ABR at the same time and so that is scheduled as well. The last ABR showed an increased hearing loss. We are curious as to whether that will be the trend or if the progressive hearing loss was a one time thing.

Until then, I'm hoping to squeeze in some fun this next month. I still have not taken my kids to the pool, gone hiking, camping, the zoo... NATTA!

Learning to Sign

I've been trying to get myself enrolled in some ASL classes but it hasn't happened yet. Then, I found out that we qualify to have a Deaf Mentor come into the home to teach all of us ASL. We met our Deaf Mentor this week. She came with the program director who is also deaf but reads lips as well. I was able to communicate with him as long as I was sitting right next to him so that he could read my lips. I used the few signs I know when possible and we only had to use pen and paper once.

Starting next week the Deaf Mentor will come to our home by herself. We will not be able to communicate orally. So it will be pen and paper and very little ASL to start. The whole family is required to attend.

I'm excited:)

Straight to the H-E-A-R-T

A blog post by Billie about her little chatterbox, Eden, has been playing through my mind today. Eden recieved her cochlear implant almost two years ago. Eden is an adorable little girl who has overcome many obstacles including the ability to communicate with her family. Today, Billie posted a sweet video of Eden speaking in her cute little voice saying, "I love you".

"I love you" is an expression we all need to hear. As the mother of a non-verbal child I'm not quite sure when or if I came to accept the fact that I may never hear those words. Because Crew does have some hearing, he is not a candidate for a cochlear implant. Crew shows his love in a million different ways.... with a smile, his hugs and quick forgiveness. Have I ever doubted his love for me? Of course not!

However, the hope and possibility that I may hear those precious words escape his mouth one day has been on my mind today. As I put Crew to bed tonight I looked at him and said, "I love you". We gazed at each other, I repeated the words, "I love you" six or seven times and just as I was about to turn away he distinctly crossed both hands over his heart and I knew without a doubt what he was saying, "I love you too"!

We have worked and worked on teaching him sign but I can honestly say that this "I love you" sign he learned from watching his Signing Time video. My heart is smiling now!

Triple Header

I have baseball on the brain. S played his 2nd baseball game of the season last night. They lost 7-9. The boys are ages 9- 12 and its his first year for pitching. Last year it was coach pitch but now the boys are learning to pitch and its so stressful watching them struggle. Coach put S in as pitcher the first inning. S had never pitched before. He was a bit rusty but I thought he did a good job for first time. The other team had several good pitchers and we really only have one. 12 year olds are only allowed to pitch one inning and so these younger boys 9 and 10 years old are learning.

H has his first game of machine pitch ball. The league has been taken over by a very disorganized woman. First game is tonight and I still have not been given a game schedule or the jersey. I'm thinking tonights game is going to be very interesting:)

Crew's ear has been draining for almost a week. Today when I took out his hearing aid there was dried blood in there. I'm so worried about his ears and his hearing. We don't need one more setback. Tomorrow morning we have a triple header with Dr. visits: 9:00 Physical Therapy, 10:00 Audiology, 11:30 ENT. Hopefully we will figure out what is going on.

Good news is that I had an excuse to come home early from work today. The babysitter is sick and so I only worked two hours so I could make it home in time to meet the Preschool bus. The weather is beautiful and now I need to go pull some weeds:)

I lost sleep last night over our culdesac woes! A nice quiet family moved out and some witchy weirdo lying ho bought the place. Rumor is that she bought it on a short sale and so hopefully she is just fixing it up to re-sell. She's been scouting out our culdesac for weeks sitting in her car watching our houses and our kids. I finally sent DH out one afternoon to see what was going on because I was concerned about the welfare of our children. She said she was just looking at houses but she drove by several times a day for weeks and now she is acting like she hates all of us! What the hell! Nothing adds up with this woman and I'm so sick of seeing her here! Pray that she never moves in. Gag!

Dr. Visits galore

Yesterday we saw the ENT. Crew's tonsillectomy was a success and his tubes look good. I had a nice visit with the Dr. about what this "progressive hearing loss" might mean for our future. I love going to The Lodge for appointments. It's only 1/2 mile away instead of the usual 30-60 minute drive. I took the walker and Crew loved "crewsin" around. When it was time to go home he threw a fit. Then, I drove him down to Walmart so he could practice navigating his walker. Taking the walker out in public is a post for another day.

Today was Opthalmology. We made the trek to the Childrens Hospital. In the waiting room I met a mother and her quadruplets! Whoa, that is so amazing. The quads are 4 years old and look great.

The eye appointment went well and Dr. whats-his-name gave a good report. The eyes are straight. Yeah! I updated him on the hearing loss and asked if he thought Crew was eligible for a deaf/blind intervener. He agreed that it would be to Crew's benefit to get one. He dictated a letter regarding the vision loss which I should receive in a week. I don't know what will come of it but its worth a try;) Thanks Lisa for helping me get tough!

Tomorrow..... Physical Therapy and Audiology for Crewman. Chiropractor for me:)

Non-Verbal Communication

SLEEP
The 5 handshape is facing the face and is then pulled down and closes to represent the eyes closing. The head pulls down to further emphasize that a person is sleeping.







Learning to sign is a long long road. We've been working on some basic signs for over two years. Initially, Crew's therapist suggested some signs like, "MORE, MILK, EAT, PLEASE" etc. She also showed me the sign for sleep but indicated that most children don't learn it quickly because they don't want to. What child wants to indicate they are tired or
ready for sleep?


SLEEP is the first sign that Crew learned. He started using it ages ago, I can't even remember how long. The communication with Crew progresses at times, plateaus and sometimes even seems to regress. Crew has gone for long periods of time where he won't use his signs or words. This is usually during a time when he is diligently working on something else like gross motor skills. I've read that it is typical behavior for these little kiddos to plateau in one area while they are concentrating on another.

It is very entertaining to watch Crew communicate that he is ready for bed. Last night, I noticed Crew subtly signing "sleep". I said to my DH, "Carl, look at Crew". To which my supposed hard of hearing son starts giggling and in a double handed exaggerated sign language fashion signs sleep repeatedly. It is so fun to watch Crew get into his sign. One is not really suppose to drag their hand down the face smashing the nose and squishing the lips but is to hold the hand in front of the face. But I say, "Hey, whatever it takes to get the point across kiddo!

A Heavy Heart

The surgery itself was a success. Crew is ornery... to be expected. After putting tubes in his ears and removing his tonsils and adenoids the audiologist was able to obtain an ABR. He hasn't had an ABR since birth only the hearing tests using the sound booth. The ABR is much more accurate and reliable. I really thought Crew was playing games in the sound booth that he really could hear but was acting "shy" or possibly "zoning out". Sometimes Crew zones when he is in a situation that he doesn't like. Or so I thought.

The results of the ABR confirm that Crew's hearing loss is progressing. I'm shocked. My heart is torn. It just can't be! Yet, the numbers play over and over in my mind. And I wonder... how much longer until he can no longer hear my voice:(

Secondly, I felt we had his seizures under control but the audiologist reported at least 3 seizures during the 45 minute hearing test. One was at least 4 - 5 minutes long. And I wonder what is happening to my child? There are so many questions in my head and my heart aches.

Ears & Throat Junk

After multiple visits to the Audiologist and ENT we've decided that Crew needs tubes in his ears, a tonsillectomy, and an adenoidectomy (sp?). The audiologist will also do an ABR test during surgery to get an updated audiogram. His recent hearing test results have shown a dramatic decrease in his ability to hear. We are hoping its a temporary result of the negative pressure in his ears and not a permanent progressive hearing loss. My prayer is that the ABR results will show that everything is okay.

Crew's tonsils are huge. When I look in there I wonder how he can even swallow. He is mainly breathing through his mouth. He snores and is often tired.

H had his tonsils out when he was 2 and he recovered very quickly. Hopefully Crew will sail through this as well but with the additional tube surgery and other health issues we deal with I'm a bit nervous. I'm waiting for the hospital to call me back with a surgery date.

Update: Surgery is scheduled for April 6th. Good bye Spring Break:(

Waiting for the "breakthrough"

If I've learned anything from the journey of raising Crew it would be to celebrate each and every achievement. The "BIG" milestones are few and far between... sitting up, crawling, walking etc. As a family we cheer for the little things. Over time I've noticed that S & H's awareness of the situation has changed. Their prayers are different. Instead of "Bless Crewser that he can walk", its "Please help Crew to get really fast in his walker".

In their presence its my job to be positive always complimenting the little things and making a big deal out of stuff. "Crew is feeding himself! Look how he can scoop! Check it out... he understands cause & effect (while playing with his ball popper)!"

The praise goes on and on. I am proud! We love him! He brings us joy!

And also,

My heart aches. He doesn't talk. The list could go on and on but I try not to focus on what he can't do. Yet, the pain is there and I desperately want to hear what is going on in his little head.
And so we wait, we pray and we hope for yet another miracle because the truth of the matter is, this battle can be won!

Ears update

We had our followup with the Audiologist and the tympanogram showed even more pressure in both ears. We immediately buzzed Crew over to the ENT where he looked in his ears with the microscope. He said that the eardrum is retracted and there is a little bit of fluid in there but they are not infected.

I'm really concerned about the fluid/pressure but at least we know that there isn't an infection. We are going to followup in 9 days. I had him look at his tonsils too and he said that they are enlarged but not enough to worry about it.

Dr. Wood also looked at his teeth and confirmed that he is trying to cut 3 molars. This has been dragging on for months. Over all Crew has been very happy and his appetite is more voracious than ever. He is good about showing his approval after each bite by saying "Mmmmmm" with enthusiasm. Crew is a great example of one who enjoys the little things in life. On our way home we stopped at our college days favorite icecream shop and ordered a shake to share. Mmmmm!

Audiology

I almost backed out of Crew's Audiology appointment tonight. I'm always running and I didn't want to have to drive the canyon again tonight but I've already cancelled twice and I need an updated hearing test for the upcoming IEP. So we went.

During the hearing test Crew wasn't responding to sounds in his right ear. He kept zoning out during the test which I think is more seizures. The results of the left ear were consistent with past exams but the results of the right were inconclusive.

The Audiologist tested the pressure in his ears with a nifty machine (I don't remember what he called it) and immediately discovered that he has pressure/fluid behind the eardrum. Crew has already been on Amoxicillan for 7 days for a Sinus Infection. He wants us to finish the dose and come back for another test. If there is still pressure he will send us to the ENT.

He is worried about the infection causing additional hearing loss. There is a possibility that Crew's hearing impairment could be progressive. I don't really think it is... but we'll see. That is a road I don't want to travel. But then again, who's choosing!

Does it sound a little crazy to wait another week to see the ENT? Is it really necessary to finish the antibiotic? I don't want this infection to drag on and on but maybe there isn't anything the Dr. can do if I'm in the middle of the Antibiotic.

Tomorrow we have Dr. Rehab again! I've really been looking forward to it but now that I know Crew is still miserable... I feel bad dragging him there. And it's too late to cancel. O' Bother.