THE SHADDOX BOYS

Jacob and Elijah Shaddox are brothers. They live with their mom, Mary, who is the writer of this blog. Jacob is 19 and is now four inches taller than his mom! He also has ADHD and gorgeous red hair. He is a freshman at a technical college studying computer maintenance. Elijah is 15! He is in 9th grade and he is not in ROTC at his high school. He also had red hair, but it is lighter and not as thick as his brother's hair. He is hearing impaired(auditory neuropathy) and wears two cochlear implants. He also has tourette syndrome, ADHD, OCD and anxiety! Mary just started her 25th year as a teacher of the deaf. She is also in her last semester of graduate school to be a diagnostician! She will graduate in December of 2015!





Saturday, July 31, 2010

Tics and also some Language!

video

video

I have been trying to catch Elijah doing his tics for a few days. The first video of him in the bing bag chair is him doing his most common tics. Nothing too serious, but you can see him kick at the fireplace some or rather kick out some. He is also snorting/sniffing quite a bit.

I started the second video while he was in the bathtub playing. I could hear him ticcing and stomping his foot so loudly. It is not the best video I have ever taken, because I was trying not to let him see me. Well then I did put the camera on him and boy he starts just a talking. I do "interpret" what he is saying because the acoustics in the bathroom are not the greatest and I wanted y'all to hear the vocabulary he was using. You can also see a lot of tics. At one point he slaps himself in the face. That one is not too common, thankfully. I communicate with him using sign and gestures. I also wanted y'all to see how I get his attention by flicking the lights on and off.

Update on Tics!

I have been trying to catch Elijah with his tics on camera for two days, but it like he always knows when I have the camera. Maybe I need to just strap a camera to him so he won't tic! If only that would work, but I doubt it.

His tics have been better, but they are not gone. He is still slapping at himself and whatever is around, but not as much. He is making more noises, but they don't seem as loud. They do get loud, but they are not constantly loud. Right now he has the chewlery necklace in his mouth just a chewing away, but at least it is not his shirt.

I am stilling lowering one of his meds in the hopes of getting him off of that one particular med during the day. Three weeks until school starts and we will see where we are then.

Thursday, July 29, 2010

Our Night Out!

Elijah and I attended a Cochlear Americas presentation this evening in Dallas. I really wasn't sure what it was about but we had gotten an invite so we went. We rarely get to go to these things because they are either on a school night or too far away.

Elijah's teacher of the deaf, who has bilateral cochlear implants, happened to be there. Elijah enjoyed seeing her. I also saw a few people that I had not seen in a while and catch up. I also met some really nice people. I spoke to the person who did the presentation and let her know if she ever needed me, as a parent of a CI child, to speak to a group, to let me know!

It was a two hour presentation. I did get to see some cool assistive listening devices that Elijah can utilize as he gets older. The coolest one was a blue tooth that he can wear as a loop around his neck and send the signal to his processors. I had seen one for a hearing aid, but not for a CI.



Elijah got to see the Nucleus5 processor and even try one on. It looked REALLY nice on him and so small compared to his Freedom processors. It will be a while before we can upgrade though. First of all, it is not compatable with his internal unit and secondly the cost. Insurance just paid for two new Freedoms so it will be a few years before they will want to purchase two new processors. I had seen the Nucleus5 before, but he had not and to see it on his ear really made me realize how much smaller it really is! If I had the money, I would buy him two more as soon as they were available to him!

It also comes with pretty cool remote control!








One thing that I was most proud of though, was Elijah's behavior. We arrived a few minutes late due to traffic. We were in the car for an hour! He chose apples and strawberries from the snacks they had available. He played his nintendoDS, drew some pictures, and played on my iphone(all electronics had sound off). He was having lots of tics, but he kept them as quiet as he could(not at my request). A few times he tipped his chair back and forth and I had to redirect him, but he responded well and fixed his behavior. I was able to whisper in his ear and ask him to discontinue something or answer a question. He used an indoor voice the whole time and never whined about going home. My heart never raced because I was afraid of him doing something that wasn't appropriate or out of control!!



At the end, we stayed and spoke to a few people. I got a new "Hear Now and Always" bracelet and key chain. Elijah picked up one of those personal portable fans that you might use when at an athletic event. Oh and it had lights on the blades and it spells out words....Cochlear, join our community(something like that). He really likes the fan! Even during all of this he was GREAT and I mean GREAT! It was awesome to see and experience!

Tuesday, July 27, 2010

Personal Responsibility

I have had two occasions this week to consider personal responsibility. I hope I can explain what I mean. The first time I thought about this was when someone posted on a cochlear implant list serve about getting a school district to pay for an FM system for the child to use at day care and at home. This costs around $2400 for the district and about $3000 for a parent to buy privately. The school does get a small discount. Now I am a firm believer in FM systems. What an FM does is bring the speaker's voice out over the background noise and make distance listening a non issue. An FM receiver attaches to the child's hearing aid or processor and the speaker wears a microphone.

I am such a strong believer in FM systems that we did purchase one for Elijah at home. Fortunately, our insurance paid $1000 for it, an online charity paid $1250 and a charity here in Dallas paid the balance off. However, this was a three month long process and nothing was set in stone. I didn't expect the school district to provide this for my son at home. Elijah does have an FM system at school to use. Like anything else, if we want the "best" for our kids then sometimes we need to purchase these things and not expect a school district or anyone else to financially be responsible for that. We got the FM for home use when he started playing soccer at the age of seven.

http://www.9news.com/news/article.aspx?storyid=145401&provider=top&catid=18
Please copy and paste this link, I can never get this thing to work on here.

The above link takes you to a story about a 12 year old whose CI processor was stolen while he was swimming out of a locker that wasn't locked. The mother had not purchased the extended warranty and loss/damage protection after the three year coverage expired. My heart breaks for this child, but again who is responsible for this. Shouldn't the parent have educated this child on the importance of protecting his processor. My son at the age of ten KNOWS to put his processors in "a safe place" when we go to grandpa's to swim. If I sign and ask him where they are he tells me. However, I as the the parent am the person who is ultimately responsible for his equipment. This is almost $8000 worth of equipment and it should be treated with respect. I never leave it up to him to make sure it is safe and I have always kept his processors protected under warranty and loss/damage coverage. THIS IS HOW HE communicates and makes his way in the world. It is not a video game or cell phone that can easily be replaced. A person's health insurance may or may not cover a replacement and even if they do it may take TIME to get a replacement.

Now maybe I am being harsh and maybe parents have not been educated. I recently went to the Statewide Conference on the Education of the Deaf and Hard of Hearing. I went as a teacher, but have often thought of being a presenter for parents on the COST of raising a child with a cochlear implant. Parents should be educated when their child is implanted on the financial life long implications. That after three years a decision needs to be made about purchasing an extended warranty and loss/damage protection. What happens IF this is not purchased. That some home owners insurance MAY cover it, some may not and how long will that take. That there are upgrades every 4-6 years and the cost involved with that. JUST in general that this is a LIFE LONG issue, not just one surgery(maybe two!).

The cochlear implant has been a wonderful tool in my son's life and I cannot imagine him NOT having it. It is such a part of his life that I would never want him to go without it just because we couldn't afford the warranty or loss/damage insurance. I don't like credit cards but that is how I paid for his recent upgrade and with that upgrade getting a new three year warranty and loss/damage coverage. ALSO, if we ever have to use that loss/damage that there is a $100 deductable that has to be paid. The new processor carries what is left of the warranty, but THEN A NEW loss/damage coverage must be purchased through a separate company. It runs about $200 a year, but much better than having to spend almost $8000 to replace a processor.

I don't want to offend anyone. I am a single mom of two boys. Elijah is hearing impaired, asthmatic, has tourette syndrome, OCD and ADHD. He is an expensive child, but I don't think I would change a thing(well maybe just one thing, the tourettes, just for him not for my benefit). I am in debt due to all of these things and an exhusband who is trying to get on his feet financially. I am thankful for good health insurance a good job that pays me a decent living, but by no means enough to cover all of these medical issues. I am a middle middle-class mom who doesn't expect someone to bail me out for either a bad decision or an uneducated decision. At some point we all need to take responsibility for the decisions we make!

Sunday, July 25, 2010

Tics--They seem never ending

Elijah's tics have been really bad today. They seem to be constant. Along with the tics has come this arguementative attitude. How much this attitude is attached to the tics is hard to know. I have been very clear to him that the attitude is not acceptable. In fact he has lost computer privledges for the night and I hate to say the sooner he gets to bed the better. I can almost take the constant tics, but the argueing is just tough.

Just needed to vent for a bit. Jacob had a great birthday party today and he enjoyed everyone who came. Tomorrow will be another day.

Saturday, July 24, 2010

Glad to be Home!

Well after a nice vacation from my kids(Is that a bad thing for me to say??), I am now home. I met my mom at La Madeline in Rockwall to get the boys. When I walked in and Elijah saw me, he ran straight to me with the biggest grin and hug. He had really missed me over the last three days. Jacob gave me a kiss, but no hug, typical teen!

I had a great time at the conference. Two of my teachers went with me and it was nice getting to know them better. Two of us went out to eat at a nice Mexican restaurant and I had two VERY STRONG margaritas and some fajitas. Well after we ate my stomach told me that they didn't like the drinks. I at least made it to the bathroom before I puked. At least I didn't puke on the other teacher. When we got back to the room we told the other person about it and I was teased the rest of the night about not being able to hold my liquor.

I also found out that I AM OLD! Not really. We were discussing our years of teaching and I said next year would be my 20th year of teaching. My newest teacher then said, "I was 5 years old when you started teaching" and the other one said, "I was 7!" I promptly told them they were still YOUNGINS! They then teased me about holding my liquor again! It was all in fun and again, it was nice to really get to know them. We stay so busy during the school year that we never really get to share and have down time!

The conference was great. I went to several good workshops and met some great people. Right now though I am too tired to even remember what I learned. I will have to pull out all of my notes to refresh my memory!

I even went to family night and had dinner with several other families who have deaf children. I saw some of Elijah's teachers from Plano and we got to chat and share stories. It is nice to be around other parents and people who understand deaf children and the dynamics of raising a deaf child!

OH and the exhibits were great. All three of us saw things that we really liked and after I get to look at the budget we may be ordering some new materials for the classroom!

I am really glad to be home and to sleep in my own bed tonight. Our three cats were very happy to see us. Tomorrow we will have a family birthday party for Jacob here at the house. Thankfully my house is pretty clean and I just have to do a quick once over tomorrow morning. The party is not until 3:00 so I will have plenty of time.

At least my batteries are a little more recharged when it comes to my boys. I love them to death and cannot imagine them every growing up and moving out, but a three day "vacation" from them was nice for me! Even if I can't hold my liquor!

Tuesday, July 20, 2010

Statewide Conference of the Education of the Deaf and Hard of Hearing

I will be attending the Statewide Conference for the Educaiton of the Deaf and Hard of Hearing in Fort Worth Texas this Thursday through Saturday. It has been four years since I have been to this conference. It is held every two years! The last time we went, I was able to take both boys with me and we stayed in the dorms at the Texas School for the Deaf. I went to workshops and the kids stayed in "daycare" at the school. This time it is just me going with two of my fellow teachers. I really enjoy this conference and meet a lot of really neat people.

There are several workshops offered during each session and you get to pick and choose what workshops you want to attend. I am hoping there are some on behavior(for students at school) and on language development. There are also a lot of vendors who come and I hope I get to see some neat things. I am hoping to reconnect with many people that I have met in the past!

On Thursday night there is a family picnic and I plan on attending. It will be put on by Texas Hands and Voices.

I also hate to admit it, but I need a mini-vacation from my kids. I'll let you all know what all I learn!!

Sunday, July 18, 2010

Webkinz!



Here is Elijah and his Webkinz pet, Trey. He received Trey as a birthday present from his friend Noah and Noah's brothers, Ben and Josh! (Thanks to mom Jennifer too.) We came home yesterday and we got Elijah all started online with Webkinz and Trey. We talked about names and he has a stuffed cheetah he names Tiger Jr., after one of our cats named Tiger. We call this stuffed animal Junior and it is one of his favorites. I suggested we call the webkinz Tiger III, or Trey for short and he really liked it. The cool thing is that the virtual pet online looks just like the stuffed animal webkinz.


Elijah really enjoyed buying things for Trey and putting him to bed last night. This morning he fed Trey and gave him a bath. This evening he had to work to make some more money to buy things for Trey. It was close to bedtime so I asked Elijah to put Trey to bed. I went over to the computer and he and Trey were playing "Go Fish". It really is a cute game and much better than some of the other game choices out there.

Last night we introduced Trey to all of Elijah's stuffed animals and to even more tonight. Elijah sleeps with about ten stuffies all together but Junior and Trey are right up there on his pillow and I am sure both will travel with us. My friend Jennifer said it is a good way to teach responsibility and I am seeing that. I also think it will be great for language development. All three of Jennifer's boys were so excited when talking about their webkinz pets at home and telling us all about them!

I had never heard of webkinz, but I will be looking for them for future gifts for birthdays and Christmas presents for children we know.

Friday, July 16, 2010

RSVP

As taken from Wikipedia--
RSVP may refer to:

"Répondez s'il vous plaît", a formal French phrase that means "Please Reply." It is with this meaning that invitation cards and similar documents are often marked with "RSVP".
A verb, meaning to respond to an invitation in the aforementioned context.

Tomorrow we are having Elijah's KID birthday party. Last year he didn't get to have one due to the divorce. We did have a family party back in April, but he wanted a swim party at his grandpa's house. I sent out about 15 email invitations. Of those about five did call and say they could not come and three did say they would come. Of the rest, I have not heard a thing. I wonder if they will show thinking that by not contacting me that meant they were coming. Now I am not the best about RSVPing myself, but I do remember more than not.

I don't want to complain, but I really do want Elijah to have a nice time and really he most likely won't care if a lot of people don't show. He will still have a good time.

Jacob's birthday is on the 23rd. My brothers Alex and Jerry are going to take him to the movies and hang with him for his birthday. We will then have a family party. I have been cleaning my house this weekend, because we are busy next week and won't have as much time to clean! Figure work on it a little at a time before the birthday party here for Jacob.

Anyway back to RSVPs, how do you all feel about them?

Thursday, July 15, 2010

Wordle

A friend today posted about a new website she had found called Wordle.net. I checked it out and really liked it. If you look to the right I have a link to my wordle that I made. I was able to put in the words and it made it up for me. I changed the colors and the layout a bit. It was really easy and fun. It was also easy to add onto my blog. I just wish it was a bit bigger! If you click on the picture it will link you to the site so you can see it larger! It would be cool to do it for an organization and then print it out to put on a t-shirt or something.

Just wanted to share!

Wednesday, July 14, 2010

Rites of Passage!



Jacob started his real teenage journey today by getting his braces. There are so many rites of passage that teenagers go through. This is one of many, but not his first. He already had some chin hairs as well as some chest hairs. At some point he will hae to learn to shave, but he will need more to grow in first! He will be 14 a week from Friday which is hard to believe. He then has his first day in high school, ROTC, dances, and a driver's license at some point....I hope I survive that! Oh and I guess I shouldn't forget about his first date and first kiss!

Jacob did well today. He hasn't even complained. He'll get his lower braces in a few months!

Sunday, July 11, 2010

The Rest of the Summer--let's try again




I tell you this computer reacts to things rather quickly at times. I deleted my last blog, because I never meant to publish it and didn't have time to add to it right then.

Anyway, where was I? This week is really my last FREE week of the summer where I don't have a lot of demands on me. On Wednesday, Jacob will get his top braces put on. Elijah and I will have about two hours to kill, so we may roam around the mall. I need to get them a new swim cap to use while swimming. His current one is TOO tight. I am going to meet a good friend for lunch on Thursday in Greenville and that will be fun and hope to stop by and see another good friend on the way home!

Next Saturday, the 17th, we are having Eiljah's KID birthday party. His birthday was back in April, but he wanted a swim party at Grandpa's house, so we waited for the summer to have it. Hopefully there will be no rain, and there usually isn't in July in Texas, but we have had a lot lately. Jacob also has a ROTC car wash on that day!

The next week gets a little crazy. On the 20th I am driving the boys to my mom's house in Marshall. I'll drive back the next day and then head to Forth Worth for the Statewide Conference on the Education of the Deaf and Hard of Hearing. Two other teachers are going with me. I'll be there until Saturday the 24th. Jacob's birthday is on the 23rd so we will have a family party on Sunday the 25th.

I then have meetings in Greenville on the 26th and 27th. The first week of August the boys have several doctor's visits and a dental check up. Jacob will go to soccer referee school from Aug. 6-8 in Richardson. The next week is not to crazy, but I do have the Early Hearing Detection Intervention Conference in Dallas on Aug. 13th and 14th. I then go back to work on the 16th!

We will have some days with not a lot to do, but not for a long stretch. I have enjoyed the painting and not have may obligations the last few weeks. I am looking forward to both conferences and meeting new people!

Jacob has a week of ROTC activities the week of Aug. 16th. My not so little sister, who will be 20 soon, is going to sit for Elijah that week!

Before I know it, we will all be back in school, me included! I do miss work at times, but not the craziness, and it is always crazy that first week back!

I hope everyone else enjoys the rest of their summer.

Friday, July 9, 2010

Memories

I decided to redo the boys' bathroom, that I painted blue yesterday, in a beach theme. I am going to be on the look out for some beach pictures I can hang, but also decided to do a collage of pictures from our many visits to Orange Beach, Alabama over the years. I put some pics from the past four years and while looking at them, I realized HOW FAST my boys have grown up.

Elijah was so skinny four years ago and still skinny two years ago. Now he could play football and tackle the heck out of someone. Jacob has changed so much in the face. He has lost his boyish look and looks more like a young man now. He is also TALLER than me and not just by a little bit.

I hope to create more memories of my boys. I need to start taking more pictures!

Here are some of the pics.

Cool pic of Elijah at the water's edge. You can see a storm coming in. This was in 2008.















This is a picture of me and the boys in 2008!




















This is one of the very few pictures I got of Jacob (2010) at the beach this year.
















This is a cute picture of Elijah at the beach this year(2010). We are at my Aunt Peggy's beach house and he grabbed her hat to wear. I didn't even ask him to pose, he just did it and I was able to snap the picture.












This is a picture of Jacob back in 2008. Just two years ago and see how much he has changed from the picture above! He has hair on his legs now as well as a few chest hairs. He would kill me if he knew I was sharing this information!














This is my SKINNY Elijah back in 2008. I was taking pictures of the cool sand castle we had all helped build and he just cocked his head to the right and I snapped the picture. It is one of my all time favorite pictures of him!




















This is one of my favorite pictures of the boys. This was taken on our last morning at the beach back in 2006. We got one last visit to the water before having to check out at 11:00.

Thursday, July 8, 2010

Update on painting project

I have painted four rooms and one hallway. I did three of the rooms and the hallway about two weeks ago. I did the boys' bathroom today. The only room that has not been painted is the kitchen and I will save that for next summer. It is a big kitchen!











This is my bathroom. One wall of it at least!











This is the hallway.





















These next two are of Elijah's bedroom!


































These next two are of Jacob's room. You can see him in his bed, where he stays most of the time! The pic of dresser and TV is sort of funny, because you can see the cartoon character Chowder on the screen.
































This last one is of the bathroom! We got a new shower curtain too. I am not sure what else I will put up to decorate!

Tuesday, July 6, 2010

Video of Tics

video

Elijah's tics have shown up again in a big way. I really debated on posting a video, but I do want people to see what a "tic" is. It can be so many things. In both videos you hear him snorting, hitting himself or the floor, and some licking of his hands in the first video. He usually licks his hands and rubs them on his face right after the licking.

In the second video you hear me ask him to stop chewing on his shirt. I am fairly sure this is a tic, but he is tearing up his shirts. Even right now, he is banging up my computer desk. As I said in my last blog, it is such a trade off. Stay on a higher dose of medicine and he gains the weight. Lower the dosage and hope the tics aren't too severe and that he doesn't gain more weight.

Oh and on this second video you can hear me ask him to PUT HIS EAR ON! I need to splice all of those together for one long video!


video

Monday, July 5, 2010

Wait and See

Elijah has gained quite a bit of weight in the last few months. Most of it is due to his medication. If you look at other pictures on this page to the right and compare them to his latest swimming picture you can see the weight change. I have been able to lower his seroquel, that he takes during the day by about 100 mg and plan on lowering it another 25 mg starting tomorrow.

However with this change I have seen more tics. Nothing too serious, but they are definitely returning. They are still better than they were back in January when they were almost all the time except when he slept. I am seeing him lick his hands and rub his face, stomp his foot, and he likes to bit on things. He got mad at me and put my arm in his mouth, but really only nibbled, no real bite. He also invades personal space a little too much, but I know it is a tic and don't react. He then backs off.

The "wait and see" is because I never really know if the increase in tics is due to the medication change or is he just having them because they are on an upswing, JUST CUZ they are. I mean there were no changes in January when the tics just bombarded him, they just increased because they did. I think this is the hardest part about medicating Elijah. Now the risperdal did help almost immediately with the tics, so I do know addding that was a good thing. The seroquel during the day was for tics, but if that doesn't help anymore than we do need to decrease it. With the weight gain we have to worry about even more things so we need to watch these medications, especially if they make him want to eat all the time!

I do know he has grown a few inches too. We go back to the endocronologsit on August 2nd. I am curious to see what he has to say about Elijah's height.

I wish there was a blood test or something to let me know if we are on the right track. Observation is all I have at this point! At least I get to be home with him over the summer during all of these changes! Now I just have to WAIT AND SEE how it goes!

Sunday, July 4, 2010

Nice Weekend

We have had a really nice weekend at my mom's house here in Marshall. My brother, his wife and my niece also came. We have stayed at her house and mostly just hung out but it has been nice to get away. My brother and I went to see Eclipse last night and then my mom and I took Tabitha and Elijah to see Toy Story 3 today. Tonight we are going to shoot off a few fireworks...mostly sparklers and some roman candles.

I am happy to say that Elijah has been really good this weekend. He and Tabitha got along really well. He was a typical boy at times and gave her a hard time, but nothing to serious. That has made for the really nice part of things!

Happy 4th of July everyone!

Thursday, July 1, 2010

Swimming with CI Proccesor




I have finally joined the rank of parents who have waterproofed their child's cochlear implant processor. I never thought I would have the courage to do it. I had heard stories of people using something called an ALOKSAK bag or using other things to waterproof their child's processor. Now that Elijah has backup Freedoms and dealing with some crazy behavior while swimming, due to frustration and not being able to hear.

The swim cap arrived on Tuesday and the aloksak bag arrived today. I turned up his microphone sensitivity and put the right freedom in the aloksak bag. It took a few tries to get the red cap on his head with the magnet in the right place(oh and I strenthened the magnet too) but we did it. He then said, "I wear it for two minutes then take it off." He is so protective of his "ears" and I think he was afraid it would break. We got in the water and after a bit his head got wet. I asked him if he could hear and he said YES! He then started going under the water and really enjoying himself. I really enjoyed being able to talk to him too. My dad and aunt came out to check him out and thought it was pretty neat he could hear too.

I think this will make for a nice birthday party for him! He seemed to have more fun and have less anxiety being able to hear. Maybe now I can finally teach him how to really swim!

Visit to the Audilogist




I took Elijah in for a hearing test today and also to get his microphone and volume controls on his processors unlocked. I am planning on trying the aLOKSAK bag with a swim cap the next time he swims and want to make sure he can hear us! The sensitivity on the mic may need to be set higher, since the processor will be in a bag under his swim cap. This is also true for the volume! I had the controls locked because with the eargear he wore, they seemed to get accidentally turned up or down. This picture shows the processor on the ear and the internal parts of the cochlear implant also. The aLOKSAK bags came in today, so the next time we go swimming we can try them out!

Elijah cooperated pretty well in the sound booth. His mappings were not changed. Here are his results:

Right ear
500 Hz--15 decibels(dB)
1000 Hz--20 dB
2000 Hz--10 dB
4000 Hz--20 dB
6000 Hz-- 20 dB

Left ear
500 Hz--15 dB
1000 Hz-- 15 dB
2000 Hz--15 dB
4000 Hz-- 15 dB
6000 Hz-- 10 dB

Normal hearing is at zero decibels and without his cochlear implants Elijah detects sounds at around 110 dB, which is VERY LOUD. With both ears performing so well, he probably hears better than these tests show, because he uses both ears together, not one at a time.

We also discussed the length of his coil cord. She had ordered us 2 1/2 inch cords and I had wanted three inches. The 2 1/2 is working pretty well, but it seems to bend the cord at more of a right angle and I worry about wearing out the cords quicker. I think I am just going to keep an eye on it for a while and see how it goes.

I'll let y'all know how it goes the next time we go swimming. We have had rain and overcast skies the last few days, so it may be next week before we get to swim!