Holiday Update!

We have had a good start to our week. I took my niece and Elijah to see Night at the Museum 3. It was very cute and funny. The kids enjoyed it and then we came back to our house. The kids played the WiiU and we hung out for a while. I did some work for school so I can start off fresh next week! We don't have too much going on the next few days. Elijah and I will go to the library tomorrow so he can hang and play in the Teen Room. We will do a bit more baking on Wednesday! I am hoping to enjoy the rest of the week and get prepared to go back to work. Elijah goes back to school on Monday and I am hoping he can get back into the routine!

My Last Blog Post

I wrote yesterday's post being blunt honest. Sometimes I think others need to know how hard it can be for a parent of a child with Tourette Syndrome. Tourette Syndrome is not just about the tics. It is about the other co-morbid disorders that go along with it. Elijah's OCD and ADHD are harder to deal with than just the tics of TS. I just wanted to show another side of Tourette Syndrome, to maybe help others understand and lend a helping hand if you know a family with a child with this disorder.

Sometimes It Is Just a Beat Down

Living with a teenager who has Tourette Syndrome, OCD and ADHD can be a huge challenge at times. Elijah is SO excited about Christmas, that he becomes obsessed with opening presents, and this is demonstrated with anger, anxiety, and with annoying others. I don't think HE means to annoy others, but he will argue and argue thinking it will get his way.

Christmas Eve morning was just NO fun. He woke up thinking he would get to open presents and I explained that we would open a few in the evening and the rest the next day. The rest of the morning is spent with him in a foul mood and being non-compliant. He just keeps mouthing and going on and on. I finally sent him to his room where he then had his little rage fit, which I ignored. Some time later, I was finally able to talk to him, but my blood pressure and my anxiety were on high alert, because Christmas Eve should not have to be a battle. The rest of the day went fine and Christmas morning went pretty well. We arrived at my dad's house to visit and then when present opening started, Elijah started with his mouthing. He wanted his present NOW and when he got cash he wasn't happy. He wanted a present. Once again, he and I had to go and have a LITTLE CHAT.

I had to send Elijah to his room twice today while his dad was here with his wife and the boy's new little brother (not so new, he is 10 months old). Elijah was telling me NO and just acting up. I wish I knew how his brain worked. I wish I knew a better way to handle him. It is like someone just flips a switch and he is another kid. I try to understand it, but after so many times of arguing with someone I just can't take it and have to just knuckle down and be a really MEAN mom and just get him to his room.

Things will get back to normal once he goes back to school. He needs the routine of school. He constantly wants his iPad, Nintendo DS or the WiiU when he is home and I limit the amount of time he has. It is usually when I am informing him that his time is up that he is his worst. He also thinks just telling me NO will change my mind about what I have asked him to do....yea whatever. I love my son, but some days are just a beat down with him.

Christmas Break is Finally Here

Christmas break is finally here. Jacob arrived home on Dec. 12th and it has been good to have him home. He went out to help my mom at her house today! Elijah's last few weeks at school were uneventful, which is a good thing. It has been crazy at work. One of the other deaf ed. teachers broke her arm and a new student moved into our area. Staff had to be shifted, but we all work well together and we made it to TODAY! We were all so ready for today to get here and my students were also ready.

I have been busy making pralines and snowball cookies. I made cookies with my students at school and we decorated them too. It was a lot of fun and a good learning experience for them! I gave away a lot of goodie bags and had fun doing it. I have a few more Christmas gifts to get, but not too much. I have MORE baking to do! I have pralines and snowball cookies to make for family and sugar cookies to make with Elijah, my niece and my nephew!

I will be working on school stuff here and there to get ahead for when we go back. Grad school starts back on January 14th and life will get busy again! I want to enjoy the next two weeks. Jacob and I have some yard work to do and I am going to have him help me steam clean the carpets. I need his strength! My poor shoulder just can't take it!

I hope you all have a very MERRY CHRISTMAS!

Thanksgiving

We celebrated Thanksgiving at my mother's house this past Thursday. My sister came into town with my nephew. They stayed with my mom. My brother, his wife and two kids came out on Thursday and then all four of us went out. Jacob drove out on his own so he could leave when he wanted too, but he stayed out for quite a while. Of course, we ate too much, but we do that every  year.


The younger kids, ages 10-14, played on electronics and had fun. My nephew, who is 4, entertained us with some of his funny sayings! We looked through all of the Black Friday sales. My honey and I ended up ordering several things through Amazon. I am not sure if any one else in the family got anything on that day. We drove home around 6:45 and were in bed by 9:30! It was a long day.


Yesterday, several of us went to the movies and then some of us went back to my mom's house. We had a nice dinner at a restaurant and then came home. Elijah went with me on some of my mystery shops today and we have had a nice lazy afternoon. I'll have to start getting ready to go back to work on Monday! Three weeks and counting until Christmas Break.

We All Have a Cold!

I have been dealing with cold symptoms for a week now. It started with sneezing and then congestion. I bought some daytime/nighttime cold relief tablets and those have helped a lot. Now my honey has my cold and so she is on the same meds. Last night, I heard Elijah coughing in his sleep so I went in and he was half asleep. I gave him a breathing treatment and some Mucinex DM. I also gave him a cough drop and he slept through the night.




CVS had a really good sale today, so I went in and bought some more Mucinex (I had a $5 coupon, woohoo) that was on sale. I also got some Zicam tablets and Zicam nasal spray that was on sale. There were SEVERAL things that I needed that had Extra Care bucks attached to them and so I ended up with $16 in extra care bucks. I also had several coupons. I purchased everything with extra care bucks first and then bought the cold stuff with a second order so I could apply the extra care bucks. I also had $8 in coupons for the first order. Overall, I saved about $24 between the two orders and got some things we needed!




I will continue breathing treatments for Elijah today. I also gave him the Zicam tablet and Zicam nasal spray. I used both too! Hopefully, we can knock out these colds soon.

Everything is Awesome!

I don't know that I would say EVERYTHING is AWESOME, but things are going pretty well. I selected this title because Elijah has been walking around singing this song from the LEGO movie for the last hour. Elijah has always enjoyed music, but he never really gotten into music. This changed about two months ago, when he realized he could find songs that I had on my iTunes account. He has several songs that he likes, but this is his favorite song right now. In fact, he just stood up to go to the kitchen and started singing it AGAIN. After another few days, I may be sick of it, but right now I think it is cute. It also amazes me still how well he does hearing with his cochlear implants. They are amazing devices.


He is acting like a typical teen more and more everyday! However, he still likes to sit with me on the couch and watch TV and holds my hand when we go for a walk. In fact, I am going to go and sit with him right now and watch the LEGO movie! I guess it is better than another episode of Myth Busters or Scooby Doo!

The Middle and Quirky Kids

The Middle is one of my favorite TV shows to watch, but I haven't had a chance to catch up on some of the episodes. Today I watched an episode about the youngest son Brick who wants to be like everyone else and have friends. Brick has always been a little different than everyone else. He is very solitary, has vocal tics and repeats the last word he says in a whisper sometimes. He is even in a class to teach social skills. I am not sure what grade he is in, but in this episode he wants to go to a school dance. The parents are hesitant because they know he doesn't really fit in. Brick asks for advice on how to make friends. The parents suggest looking people in the eye, actually talking to people and to maybe put down the books more. As they are talking, he stands up and walks away with as he states an idea he has. Of course, there he is not behaving in a social way.

Brick actually makes it into the dance, and the parents sit outside in the car worrying about how it will go. They aren't even sure if they should leave. The dad even says he is a quirky kid. The parents arrive home only to receive a text to come and pick him up. The parents arrive and Brick texts he is fine, but then he soon comes out and doesn't want to talk about the experience. Brick has also lost a shoe in the process. The show ends with a girl coming over to bring Brick back his shoe. She looks like she has some social issues too, but she invites him to go get ice cream. Brick thanks her, declines and then slams the door. Of course, mom intervenes and tells him that she just asked him out. Brick grabs his jacket and runs to the door to get her. The show ends with the parents sitting outside the ice cream parlor receiving texts from Brick and wondering how he is doing.

As a parent of a quirky kid, I so appreciated this episode. Elijah is the quirky kid. He doesn't always say "HI" back when another student or adult says "HI" to him. He doesn't always fit in and I am not sure if he really has any friends at school. He doesn't care what other people think of him, at least other kids anyway. He is just out there doing his own thing. As a parent I just want to fix this for him, but I can't. All I can do is try to find ways for him to be around other kids and see what happens. We went to the library yesterday and he hung out in the Teen Room while I worked on grad school stuff. He played some Wii games with some other teens. I am going to start taking him every week so he has a chance to work on his social skills. It just isn't easy knowing he is the quirky kid and knowing all I can do is provide him with opportunities and practice with him as much as I can so he knows what to do when around others.

ARD Meeting

We had an ARD meeting for Elijah yesterday afternoon. I feel blessed to have such a great group of people working with and advocating for Elijah. The behavior specialist is going to come in and observe him to give the teachers some ideas on how to handle him. The LSSP is going to complete an evaluation on Elijah to determine if he is eligible for counseling. We discussed his medications and changes we have made in dosages and in the times he takes the medicine. We also discussed the STAAR test! We have a new test this year....the STAAR Accommodated, which will be on the computer. Elijah will take this test, but we are still waiting on guidance from the state on how it will really work. The staff at the school all agree that Elijah is a great kid, but that he is having a rough time right now. Hopefully we will figure out a way to support him better.

We will meet again after January! The school gets 45 school days to complete the assessment and then so many days to have the next ARD meeting. We can also discuss the STAAR-A some more and discuss plans for high school. OH MY DID I JUST TYPE HIGH SCHOOL. Oh what does the future hold for Elijah. I really don't know. He is such a smart kid, he just has to mature more and learn to think before he acts. Hopefully we will get a good plan for him and also a good plan for his future!

Doctor's Visit

It seems to never fail, that Elijah has a psychiatrist visit and then the next day has an AWFUL day at school. Yesterday, we visited the PRN for the psychiatrist Elijah sees and discuss his behavior. It has been off and on for a few weeks, but the PRN didn't want to change any of the dosages on his medication. I was not happy, but she is the expert. He just always seems to be "ON THE EDGE". He  tries so hard to make the right choice, but his body and brain won't let him at times.


I got a phone call from his principal today while I was at work, that he was having a ROUGH DAY. He was in the office having a meltdown. I finally got him on the phone and talked him down. I then made a call to the PRN and waited for a call back. When she called she stated that she thinks it is all behavioral, that he can control himself if he will calm down for me. Well, he used to calm down for the principal and teacher. Now it is a phone call to me. She increased one of his morning meds by 0.5 mg and we will go and see her in a month. I have also asked the school to pull the behavior specialist in to do some observation. I also asked for an ARD to discuss counseling and the STAAR-A exam. For those outside of Texas the STAAR is our state assessment and there is a new version...A is for accommodated. It will be on the computer. I want to discuss that with the school as well. Now I'll just have to wait for the diagnostician to give me a call.


I'll let you know how it all goes. Hoping for a better day tomorrow. I just hate to see him struggle with these behaviors.

Camp, Grad School, and Jacob

We have been busy the last few weeks! My honey and I took Elijah down to camp a few weeks ago. This is a camp for children with Tourette Syndrome! We drove down on Friday and arrived in Brenham around 12:30. We made it down in time to tour the Blue Bell Creamery Factory and see how they make their ice cream. I spent about $100 in the gift shop buying some Christmas presents and of course a shirt for me! The tour was awesome and we got to have a HUGE scoop of ice cream at the end. We got to chose from 16 different flavors. Then for another $1.00 we could get another scoop if we wanted. Well, of course, Elijah and I had to sample another flavor, so we each got another scoop!




We checked into the hotel and then took Elijah to camp. He was SO ready to be there and didn't even look back when we left. My honey and I had an awesome dinner that night and then crashed at the hotel. We spent the next day shopping in Brenham and at some other places between Waller and Brenham. We visited our first Buc'ees gas station. We ended up there on two different occasions and dropped some money there! It really was an interesting experience!




We picked Elijah up on Sunday and participated in the closing ceremonies. He had an awesome time and can't wait to go back in March. Jacob had come up to stay at the house that weekend while we were gone, but we didn't get to see him. He had actually come home the weekend before and we enjoyed his visit. He is REALLY liking college and I think he likes being on his own. His financial aid FINALLY came through this week and we were able to figure out how much he will have between now and January. I was able to put some money back into his savings account and pay myself back for the books and other things I had fronted him the money for. I think we were both relieved to finally have the money arrive! He is coming home next weekend. I do think he misses us and I know he misses his girlfriend AND the cats!




Grad school is going well for me. I am staying at least one week ahead if not more! I have even turned in two large projects that aren't due for at least another month. This time next year I should be doing my internship and preparing for graduation! That is really hard to believe. I am ENJOYING being back in the classroom and the kids are awesome. One of kids told me that I am a FUN teacher and he likes learning. That really made my day!

School Year 2014-15

The last three weeks have been a little hectic and crazy. Elijah started the 8th grade back on Aug. 25th and so far things are going well. He has settled in nicely with only a few emails needed to keep me informed of behavior. I started back in the classroom on Aug. 25 with grades 3-5! I have five students who keep me very busy and I am happy to say that my sign skills are as good as they were five years ago! I am really loving being in the classroom!

I also started graduate school on Aug. 25th.  Thankfully, the first week of assignments consisted of "introduce yourself" activities and no real work was required. I am happy to say that all of my assignments that are due by this weekend (Sept. 14th) are done and I am working on next weeks assignments! I am liking the material and as always learning a lot.

Jacob started college this year at a state technical school that is two hours away. Elijah and I helped him move on Aug. 30th. Lets just say, IT WAS AN EXPERIENCE! The major issue that day was getting him a key for HIS room in the apartment he shares with three other guys. Once that got sorted out, we got him moved in quickly. It was an all day event though with getting his wireless services set up and waiting in a LOT of lines! I was exhausted when we left, but had two days to recover before heading back to work.

Jacob seems to have settled in nicely. He texts at least once a day, per my request, so that I can make sure he is still alive. He likes his classes, from what he tells me and doesn't seem homesick. I have talked to him a few times on the phone, but I am trying to let him spread his wings! I think he will come home the weekend of the 20th.

I do miss him, but I am happy for him. Elijah has done well with the transition and as always my honey is very supportive! The cats seemed to have adjusted as well. I am curious to see what happens when Jacob comes home for a visit. If it weren't for the cats, I don't think we would see him until Christmas!

I am keeping my fingers crossed that all goes well this year for all of us. It is a big year of change. This time next year, Elijah will be a FRESHMAN in HIGH SCHOOL and I will be in my last semester of grad school! YIKES!

Elijah and his iPhone!

Elijah has taken his iPhone to school each day this week with no problems, that is until today. I got a call from one of his teachers about his behavior. He had to be asked twice to put away his phone and he disrupted the class quite a bit. He ended up in the principal's office. I told my honey this story and so she went on the hunt for an app that I could use to control his phone....and she found one. It is called ParentKit and I installed it tonight. I am going to take advantage of their one month free trial. Here is a link http://www.parentkit.co/

I installed the app on my phone and then added Elijah as one of my kids. The app then gave me a website to go to on his iPhone. I went to the website and entered a code that I got from MY iphone when I was registering him as a user. Once I did that, I then had control of his iPhone. I went to the app on my iPhone and set up his account. I turned off Safari and the ability to install apps or make in app purchases. I then went into the scheduling part of the account and set up very specific times he could have access to the apps on his iPhone. He now can't get to his games during the day at school. I set up his lunch time as a time for when he can access his apps. I then turned them off again and set it for him to have access after school. I am going to let him know that I can take away the lunch time access if he doesn't start behaving, especially since his behavior today occurred after lunch.

I showed him his iPhone with the game app not there. I then turned them back on and let's just say he wasn't too happy. I am sure he won't like me too much after all of this, but parenting is not an easy job and I don't have to be popular.

Update on the Lost Freedom Processor

I have blogged about sending Elijah's Freedom Processors to Cochlear to be cleaned, when he got his N6 processors activated. We received one Freedom back after about four weeks and then we didn't get the second one. I called and as I blogged, received poor customer service. It took another three weeks to get the second Freedom processor back. We now have two sets of Freedom processors as back ups for Elijah. I had purchased a new two year warranty on his newest set of Freedoms in June 2013. I sent the paperwork in to cancel that warranty and get a partial refund, which will then go towards the portion of his N6s that we had to pay for. I am hoping that this warranty refund will be between $500-$1200, but you never know. We now have a new three year warranty on the new N6s that he received in June. It will take about four weeks for the refund to show on the credit card I used to charge it on last  year. Hopefully, there won't be any issues with this!

Misconceptions

Earlier today, my doorbell rang and so I went to answer the door. When I opened the door, there were two women standing there both looking at me. I stood there and waited, and they didn't say anything. I then asked who they were looking for. The taller woman then gestured to the shorter one who began signing. The taller woman started interpreting for her. I then told them both that I know sign language. They were Jehova's Witnesses, who wanted to tell me about some videos online for children with sign language. We spoke, and then I asked them how they knew I had a deaf son. Now, realize, they had never asked me if I had a son who was deaf, and I doubt they just went door to door informing people of these videos. They then said that a neighbor had mentioned to another Jehova's Witness that there was a deaf boy who lived on the street. I am sure it came up when someone saw the DEAF CHILD AREA sign on our street.


Many people have the misconception that all deaf children sign. Granted, Elijah does understand some signs, but it is not his main mode of communication. The same is true for children with cochlear implants, not all of these children can communicate orally. Many children with cochlear implants still use sign language. There is no right or wrong way, there is just the way that is right for that particular child or family.

Using Sign Language to Communicate

Elijah hears very well with his cochlear implants, but there are times when I use sign language to communicate with him. Of course, when he is not wearing his processors I use signs to communicate. This is usually when he is dressing or bathing! There are other times though, that I do rely on sign to communicate with him.

Yesterday, we went to the recreation center for archery tag. This was in a huge gym, that was split down the middle and there was a lot of NOISE. All of the kids got to practice shooting with the bow and arrows and then the game started. He had to wait with the older kids while the younger kids played first. I was about 20 feet from him walking to try to get my steps in (I wear a Fitbit and am trying to lose weight) and he would whine and say he wanted to play. I was able to sign to him "wait, stop" and threaten to take away his iPad later....all in sign language. Later when he was up playing with his team, I was able to sign to him "good job, stop" and a few other things. Even with his processors, in a LOUD environment it can be hard for him to hear.

Even today I used signs with him again. We were at a loud restaurant for my brother and soon to be wife's after rehearsal party. He was at the kid's table with his cousins and I was able to sign ask him if he wanted his iPad later, and he voiced yes, and I signed for him to stop whining. My brother looked at me and said, "I wish my kids knew sign so I could speak to them quietly like that." Elijah really does understand sign language, even though he voices back and doesn't sign to me. I am glad that I have this way to communicate with him either due to background noise or distance!

Customer Service

Elijah was first implanted back in September of 2001, which means I have been dealing with Cochlear Corporation for almost 13 years. He was first implanted with the body worn Sprint processer, then he upgraded to his Freedoms, and now has the Nucleus 6 processor. During these 13 years, I have had to call Cochlear on average of about 7-10 times a year. I have always gotten great customer service, until today.


When Elijah upgraded to the Nucleus 6, Cochlear Corporation offered a program where you could request to send your Freedom processor(s) back to them to be cleaned and to make sure they are in good working condition. I opted to do this, and when the N6 processors arrived there were two return boxes, one for each of his Freedoms processors. After his N6's were programmed, I boxed up his Freedoms, per the instructions and kept the tracking numbers. I then delivered them to a FedEx facility to be picked up.


I checked the FedEx website the next day and saw that both processors had been delivered. Last week, I received one of the processors back from Cochlear via FedEx. I decided to call today to make sure that they still had the other processor and try to get an estimate on when it will be returned to us. I want to cancel the extended warranty I purchased for these two Freedoms to get a partial refund to help pay for his N6 processors.


I called and a gentleman with customer service answered. I explained why I was calling and then he asked for my son's name. He then said, "You are trading in your freedom processors" and I said "no" and explained the return program and that this was offered by Cochlear. I asked him if he was aware of this program and he said he was. He then asked for my tracking number, so I gave him one. He then said, "what is this tracking number for?" I then explained the program (rather irately) again and WHY I had the tracking numbers and what they were for. I asked him again if he was aware of the program and he said he was, and then put me on hold. I waited for five minutes and then I called in again using my home phone, while still on hold with my cell phone.


A young lady answered the phone who was more familiar with this program. She asked me all of my questions, got the tracking number and one serial number for the processor I had received back. She then said that she showed they had received the other one, and would inquire on the other one but would need some time. She asked if she could call me back. I said she could then asked to speak to a supervisor, explaining that I was still on HOLD with this other gentleman who was clueless. While I was waiting for the supervisor, the gentleman, let's call him Dan, came back and I got his name and he really had no answer for me except that they had received both. He couldn't tell me if they still had the one there. I told him what I had done with my other phone and that I was waiting for a supervisor. He then said, "Well I was just going by what you told me." OH this irritated me even more. I then spoke to the supervisor and explained what had happened. I compared the two customer service reps and told her about the Dan's last comment. She stated she would pull the phone call and listen to it and apologized several times.


I told her this was the first time in 13 years that I had received such poor service. I am just so glad this didn't happen early on when Elijah was first implanted.

Nothing New

There isn't too much new to write about these days. I got an A in my grad school class, and I am all registered for the Fall semester. Elijah is still liking his new Nucleus 6 processors. We went to visit my sister this past weekend and he got to use his Aqua+ Pack several times. I had to add the Namuu hat to keep the processor on while he was swimming. The mic lock tubing just wasn't keeping the processor on his head. We had a great time with my sister and my nephew Trent. I am home for a few weeks, then I will go to a three day conference. The boys will stay with my partner.

I am taking Jacob to his college orientation next week. We have slowly been purchasing what he will need for his apartment. We found a desk at an office supply place and I'll pick it up this weekend. I can't believe that he will be 2 hours away from me in just two months. I think I can survive it!

I hope everyone else is having a great summer.

Losing Weight

When we got Elijah's bloodwork, back and it showed he was susceptible to diabetes, I made the decision to put him on a diet. I also added walking to his daily routine. I also decided it was time for me to lose some weight and change some of my habits. Elijah's cholesterol was also a little high for his age so we are working on that too.

He is now eating a cup of Cheerios, a bowl of strawberries, an egg(made with egg beaters so no cholesterol) and a half a cup of milk(to drink) for breakfast. There is also a half a cup of milk with his cereal. Lunch varies depending on the day, but he likes to have a ham or turkey sandwich with an apple most days. Dinner also varies, but thankfully we had already added vegetables to his routine so we didn't have to worry about trying to get him to eat vegetables. He is averaging between 1200 to 1600 calories a day. His snack in the afternoon consists of half a cup of Greek yogurt(no sugar added) with strawberries, blueberries and sometimes pineapple. At night he usually eats a Skinny Cow no sugar added ice cream sandwich. I found them on sale and stocked up! He usually has a cup of milk too!

He lost 1.2 pounds the first week and then at our second weigh in today he lost another 2.6 pounds! You can really see the weight loss in his face and his stomach seems to be shrinking some. He is also walking between 1-2 miles a day with me. I am averaging 2-3 miles walking, with another 2 miles during the day doing housework or daily activities. My FitBit keeps track of that for me! I have found that measuring and weighing food makes a HUGE difference for both of us. A cup of milk really isn't a whole lot of milk and both of were probably drinking twice as much as we are now. It also helps that I am off this summer and have the time to walk and keep track of calories.

Elijah really hasn't complained too much. He sometimes doesn't want to walk, but he usually can be coaxed easily to come with us. He earns more time on electronics when he walks! He is really enjoying the fruit and LOVES pineapple! He could eat it with every meal I think. Hoping for a good weigh in next weekend!

Nucleus 6 Turn On

Today was the day that Elijah's Nucleus 6 processors were turned on. It was a very good visit and Elijah cooperated very well. He sat and listened to the tones and identified the quietest tones and then it was quite obvious when the tones  were loud. He actually winced a few times, but thankfully did not get mad. Once it was all done, he sat and listened with both of his new processors. He liked it and said that they "felt good", meaning on his ears. The audiologist then showed us how to turn the telecoil on, and explained how to change programs. For now, he has only two programs, one new one and one from his Freedom processors. The audiologist also gave me a tutorial on the remote system. It is pretty cool, and will change settings on both processors at the same time!


Elijah quickly turned on the telecoil, plugged his music links into his iPad and started playing. The audiologist and I visited for a bit and reviewed a few things on the new processors. She wants to see him again before school starts and do a hearing test, so I set up that appointment for August. We left and took some pictures. For some reason, I cannot post pictures on this blog, but I will when whatever glitch gets fixed.


We arrived home and took out his colored covers and put a blue one on one ear and the orange on the other ear. The audiologist labeled his processors on the coil, with an R for right and an L for left. There really is no other way to label them. He will be using rechargeable batteries, so he won't be using SkinIts right now. I am thinking of ordering him a few more colors. I am hoping the Aqua+ Pack comes in soon, so he can wear it and swim with his processor!

Just One More Thing

Elijah just can't seem to ever catch a break. When we went to the pediatrician on Monday, he had blood drawn. He is on so many meds for his Tourette Syndrome, OCD and ADHD, that the doctor wanted to check his liver function and whatever else could be affected. The doctor also checked his cholesterol which was a little high, but not too bad, and also checked for diabetes. Well, he doesn't have diabetes, but he is not too far from it. The nurse said she was going to send me information on a Step 1 diet. I really wasn't too surprised, he has put on so much weight in the last two years. I can blame it on medicine, but I can also blame it on poor food choices.

I was at the rec center when the nurse called and then my honey actually called me. She was close by, so Elijah and I met her at the grocery store. We picked up some fruit, yogurt and Cheerios. Cheerios will be for breakfast. The fruit will be for a snack as will the yogurt. I have needed an incentive to lose weight and now I have one....for Elijah, because he needs to lose weight. I am also going to have him walk with me whenever I go walking. All we can do is get up every morning and tackle this the best that we can. I am going to start counting his calories too. I tried to explain to him why we have to change things up with what he eats, and finally told him if he doesn't make these changes then there are needles in his future. I know this isn't going to be easy, for any of us. He doesn't have diabetes now, and my goal is for him NOT to ever get it. This is a true kick in the rear for me, but I think I needed it to put these changes in place!

Elijah's Nucleus 6 Processors Arrived Today!

I was quite surprised to hear my doorbell ring this morning. Elijah and I were getting ready to leave to go to the local rec center for his Lego Robotics Camp, when the doorbell rang. I opened the door to the FedEx man standing there with this HUGE Cochlear box. SunMed had said the processors would ship in 5-7 days, and today is only day 4. When I had talked to Cochlear they had said 6-8 weeks.

 

It also never fails that I miss anything that needs a signature from Cochlear. I always have to drive in to the FedEx office to pick up the shipment. I should have run out and bought a lottery ticket today! We had to rush off to the rec center so we didn't get to take a look at anything until we got home, 3 hours later.

 

We looked at all of the tiny little boxes in the two big boxes, and then left it all alone. I tried to snap the processor and battery together, but could not get them together. I decided to leave it alone, because there was probably something I was missing and I didn't want to break them!

 

I got an appointment for Elijah for Monday at 3:30! I am very excited for him. I will be sure to post pictures.  Here is a picture of him with the cool boxes his processors came in.

 

 

Elijah's N6's Have Been Ordered

I got the email today that Elijah's N6's have been approved at the in-network rate! He and I sat and looked at the order form and he decided he wanted the color Maize(beige). He also picked out two different processor covers(one for each ear). We are both very excited that he will be upgrading to the N6 from his Freedoms. I was told it will take 5-7 days for them to ship to us, and hopefully someone will be home to sign for them. If not, I will make the 20 minute drive to the FedEx office the next day and pick them up! I can also send his Freedoms back to be cleaned once his N6's are programmed. I made an appointment for him on June 25th to get them programmed. Even with insurance coverage these processors are still expensive, but I am happy that Elijah will get this upgrade!

 

Here you can see the size difference between the Freedom, which Elijah is wearing now, and the N6 he will be wearing soon!

 

In a Little Less than Two Weeks

In just a little less than two weeks, Jacob will graduate from high school. Oh, where has the time gone. Time has passed way too quickly for me. In just about three months he will be moving to Waco to start school at Texas State Technical College to pursue an Associates Degree in Computer Maintenance.

 

We plan on visiting the school in July so he can attend a financial aid seminar that he has to attend in order to get his financial aid. He also needs to talk to a success coach to get his classes planned for the Fall and find out how registration works. We also  plan on taking a look at what his apartment will look like, so he knows what he needs. It will be a four bedroom apartment on campus. He will have his own room that he can lock and there will a common area and kitchen for all four of the residents to share. We are going to see what all is in the area near the school and he is also going to look for a job. It will be a busy day!

 

I still can't believe he is graduating and that things will change a lot in the next few months. I hope I can handle it all! here are some pictures I wanted to share.

 

2005

 

 

 

Jacob and Elijah at Disney World 2007

 

 

Jacob 2007

ROTC 2010

 



Jacob 2011

2012

 



2013

2014

 



Why is it?

Why is it, when someone is trying to excuse the profanity they use, they refer it to having Tourette Syndrome....or having a case of Tourette Syndrome? This past Saturday night I caught a repeat of an episode of Kitchen Nightmares with Gordon Ramsay.  It was for Amy's Baking Company. This was one episode where Chef Ramsay actually refused to complete the make over of the restaurant and help the owners. They re-visited the restaurant and a reporter went back to talk to Amy and her husband. This is a segment of the interview, so please watch and see how she mentions Tourette Syndrome. (here is a link to youtube just in case my video doesn't work..... https://www.youtube.com/watch?v=lMKyiiVuu7I 

 

 

This person wants to say that she had a severe case of Tourette Syndrome and this excuses why she uses profanity. I wish people would think before they talked. This is one reason why misinformation on Tourette Syndrome continues to spread.

Follow Up on the Cough

I took a half a day and took Elijah to the pulmonologist on Wednesday of last week. His breathing test was not as good as the one he had back in March. The doctor decided to put him on steroids for five days and gave me a prescription for an antibiotic as well. He also increased his inhalers to 4 puffs 4 times a day for a week of albuterol. Then for another week it would be three times a day and then back to two times a day and only two puffs.

I kept him home on Thursday, because he didn't sleep well and I wanted to get in breathing treatments over just using the inhalers. I also knew he would be wound up on steroids and he was. By Saturday, the cough was about the same so I filled the antibiotic prescription. Today was the first day that I haven't really heard him cough much. He it using his inhaler at school with the nurse watching him to be sure he is doing it correctly. I am glad he is over this hump. He has not had issues like this in a long time.

We already had an appointment for June 9th and we are keeping that one as a follow up for this cough as well as a typical check up. I am fortunate to have a doctor who is very pro-active when it comes to asthma! Some people wonder why I keep using a pulmonologist, and not just my pediatrician and this is why!

Elijah has a Cough

Elijah has a cough. It is most likely due to the change in the weather. The rain came in and so did the cool air. He has had the cough since Sunday. If he were a typical kid, I would just keep an eye on him and give him allergy meds, but this is Elijah. His lungs are not at 100% and may never be at 100%. His premature birth and being on a ventilator are the reason for issue with his lungs. He was on a high frequency ventilator for five days and on a regular ventilator for seven more days. The ventilator saved his life, but it also damaged his lungs. Thankfully, he has not had a cough or issue for over a year. I will call the pulmonologist tomorrow morning and see what the nurse thinks. I gave him a breathing treatment Sunday night, last night and again today when I got home from work. He will take another one before he goes to bed. I have also given him Mucinex.

I know I may sound like a hypochondriac when it comes to Elijah and this cough, but if I am not vigilant he can get sick very quickly.

PROM!

Here are some pictures of Jacob and his date, Nikki! They were taken in downtown Wylie. They are going to the Olive Garden to eat and then on to prom. I have to say they both look  very nice!

 

 

 

 

 

 

Slowing Down....A Little

I have spent the last five years rushing through life. In fact, I have probably been rushing through life for the last 14 years, since Elijah was born. Parenting two boys, especially one with special needs, is no easy task. Elijah came home on oxygen and has always needed more attention than a typical child.
I work full time and have been mystery shopping for the last four years, and now I am in grad school.

I just started getting child support again back in January, and I think I can finally slow down a bit and not work so hard. Of course, I will keep teaching and working on grad school. I am slowing way down on mystery shopping. I am finally at a point where I feel like I can slow down and enjoy the boys and spending time with my honey. Time has passed too quickly with Jacob and I want to be sure I can spend time with him and Elijah this summer. I am so used to rushing around and working so much, that I hope I can make myself slow down and smell the roses!

Rite of Passage

"A rite of passage is a ritual event that marks a person's transition from one status to another" as quoted from Wikipedia. Jacob has been experiencing many of these and has many more to come. My brother took him to buy his first real suit two weeks ago. Jacob will pick it up next week. Today I met him at Al's Formal Wear to reserve a tuxedo for prom. Prom will be a HUGE rite of passage for Jacob. I am excited that he is going! Graduation will be another rite of passage and then starting college.

 

I can't wait to see Jacob in his tuxedo. He choose a Zootux, which is similar to a zoot suit. It should go well with the 1920's theme for the prom. I can't wait to post pictures. This is a picture of similar to what he will be wearing, but he will also have a vest. The vest and the tie will be navy blue.

 

 

Mischief

The definition for mischief is--playful misbehavior or troublemaking, esp. in children. This definitely describes Elijah these days. He is not misbehaving to be mean or cause trouble, he is just being a kid and accidentally breaking things or driving me crazy. I think it is a mix of his Tourette Syndrome, OCD, ADHD and being  TEENAGER. I hope I can survive these teen years.

This mischief usually occurs when he is bored and doesn't have much to do. I may be busy with house work, grad school work, or just WORK in general. He has too much time on his hands and I am too busy to notice this mischief. After two days home with him on the weekend, I am ready to go back to work.

One day he will finish growing up and move out (I hope at least) and I know I will look back on these days and laugh. I will not want him to move out and have him be my little boy forever. I guess I should enjoy these times now and be glad he isn't out causing mischief, and is just causing it here at home.

What is Tourette Syndrome?

I have blogged a great deal about Elijah having Tourette Syndrome, but I don't think I have ever defined what it actually is. According to this website  the Tourette Fact Sheet, http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm, it is "s a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics."

That seems like an easy definition to understand, but then you have to ask yourself....what does a tic look like? This is not as easy to define, because they can be different for each person. Right now Elijah has a tic that is very LOUD and sounds like "ahhh, AHHHHHHHH". He will do this over and over again, and is also humming a great deal. His other vocal tics include a very loud raspberry noise, clearing his throat and snorting(even though it is not really vocal, it is a sound). His motor tics include licking his hands, rubbing his face, making a mean face(again, this is hard to explain, but it is different from his usual face he makes when he is mad), slamming his leg down when laying on the floor, chewing on his shirt, and slamming his hand down. He sometimes slaps himself in the face, but this is rare.

One reason I wanted to define Tourette Syndrome and explain tics, is because an incident at school this week. Elijah has a new teacher that has replaced one of his other teachers. She had written on his status sheet that he was making RANDOM noises during class. He would not stop when asked. When I saw this note, I emailed his case manager at school and asked if this NEW teacher knew Elijah had Tourette Syndrome. The case manager then sent my email onto the new teacher, who emailed me back later the next day. She said that the noises he was making seemed INTENTIONAL and that he could stop them when he served his Take-5, which is a 5 minute time out. So I emailed her back and tried to explain more about Elijah's tics, and she had even asked me for help understanding Tourettes in her email. However explaining a sound in an email, isn't always easy. I sent her my telephone number and asked her to call me this coming week.

This is a video done back in the summer of 2010. Elijah's tics are much better now, but these are some of his more extreme tics. He is on different medication now.

Here is another video of him with his tics. This was also taken back in 2010.

Parenthood--The Offer 3/20/14

Parenthood once again tugged at my heart strings last night. In this episode, Max, who has Aspergers goes on an overnight field trip with his class. His mother, Kristina, was going to chaperon, but he told her that he didn't want her to. The parents talk about it and decide to let him go. They later get a phone call that they need to come and pick up Max. They drive the 2-3 hours to pick him up and he won't tell them what happened. The teacher who waited with Max, also didn't know what happened.

While they are driving home, Max finally opens up by asking his parents why the other kids hate him. He finally tells them that one of the boys peed in his canteen and called him a freak. You can see the parents reactions during this scene and it is heart wrenching. Both parents are visibly upset, and the father is ready to take on this boy who harassed Max. Max tells his parents that he tries to understand his friends and you can hear how much he wants to belong, but just can't. He knows he is different and that he will never understand why they do what they do. He tells his parents that he is a freak. The mother takes off her seat belt and climbs into the back seat to hug him. Of course, Max tells her this is unsafe and that he doesn't want to be hugged, but she keeps hugging him. The father is on the verge of tears. This is how this storyline in this episode ended, and there were no previews about this storyline for next week.

All I can say is bravo for taking on the topic of bullying, Aspergers, and special needs in general. As a parent of a special needs child, I worry that my son will be bullied. He is in 7th grade right now, and so far things are going well. I worry more about him entering high school in another year. Parenthood is one of the few shows to take a realistic look at the life of a family with a child with special needs and so far they are doing a great job.

A Little Bit of Sugar Goes a Long Way

I took Jacob and Elijah to see The Lego Movie this morning. I was surprised that Jacob decided to join us and we had a good time. We snuck in some candy and of course bought popcorn and some drinks. Sugar has always affected Elijah. It makes him moody and argumentative most of the time. I knew this when I let him have Sprite and M&Ms, but he has the right to be a kid on some days. I knew this going in, but boy did it really affect him today.

At first he was argumentative, which didn't make for an easy hair cut after the movie. We managed to get through that and arrived home. He didn't argue much the rest of the day, but his tics were off the chain. He was constantly making noise and chewing on anything he could put in his mouth. His tics have not been this bad in a while. He was full of energy, from the sugar I am sure, and basically drove me nuts. Well, he drove me nuts after several HOURS of listening to him. At some point, it does wear on my nerves.

He finally calmed down some time after dinner and his tics even seemed to subside a bit. It may be a while before I take him to another movie, but we did have a good time while we were there!

Sometimes the Old Way is the Better Way

As I posted earlier, Jacob has been accepted to the Texas State Technical College in Waco, TX. We completed his FASFA information and then TSTC contacted us yesterday. We need to send in a copy of both of our IRS Income Tax Transcripts for 2013. I called the school to find out exactly how to do this, and the gentleman explained it to me.

Last night, I got on the IRS website and found what I needed. I completed the request online and was able to print a copy of my transcript. I actually was able to save it right onto my computer and then send it by email to TSTC. Before doing this, I wanted to get Jacob's transcript. Well, I completed the form online just as I had done mine, but the webpage said the information didn't match what was on the return. I tried again, thinking I had made a typo and got the same information. Jacob then sat down and did it, and again we got an ERROR message and we were then locked out.

I tried again tonight and the same thing happened. I then searched the web for "irs transcript" problem and found a FORM that you can complete and mail in to get a copy. The form then had a phone number you can call to request a copy. I called the number and it took all of three minutes to complete the request. I was NOT told that the information didn't match what was filed(there was information I had to answer to prove Jacob was Jacob) and we should get a copy in 5-10 business days. I will then scan the form in and send it to TSTC. I still don't know what the original problem was when we tried to request it online, but I am glad I could get it done over the PHONE!

ICED in AGAIN!

School was cancelled again today due to icy roads and unsafe driving conditions. The sleet started yesterday afternoon and didn't let up. Elijah was SO excited to have the day off. He spent the day watching TV and playing with Legos. I did get him to complete a few chores with me that we didn't finish yesterday. Jacob slept in and did his chores late in the morning, but has been on his laptop since then. I even ordered us a PIZZA for lunch to be delivered! I haven't left the house all day.

I walked 10,000 steps while watching the Oscars--OK not all 10,000 at once, but I met 10,000 for the day and will add a few more before bed. I completed one quiz last night and one quiz today in each of my classes. I even watched THE WALKING DEAD today! It was nice to get this extra day off and play catch up with my TV. I am also way ahead in my grad school classes, but I'll keep working. I would prefer to stay ahead then have to start playing catch up.

We are off for Spring Break next week, and then in a few weeks we will take Elijah to a Tourette's camp. He is very excited about that!

Jacob Has Been Accepted into College

Jacob applied to Texas State Technical College back in November. He received his acceptance letter a few weeks ago. I have been so busy, that I forgot to blog about this! He is very excited about going to school there. He wants to get his associate's degree in computer maintenance. The school is in Waco, TX, which is about 90 minutes from Wylie, maybe 2 hours on a bad day!

We discussed his living arrangements, and decided on an apartment complex that is on campus. It is not managed by the school, but the complex will assign him three roommates. It is four bedrooms and he will share a bathroom with one of these roommates. They share a common living area, but he will be able to lock up his room. He will have to buy a meal plan for the first two semesters, but I think he will use it! He has learned to do some cooking, but I am sure he won't want to cook every day. We sent in all of the paperwork and a deposit.

I sent his TAKS scores to the school, so they could look over them. I am thinking he scored well enough that he won't have to take any of the exams to test his language and math skills. He completed his FASFA and I completed mine for grad school. Things are moving along. He has to get his final high school transcript sent to the school and he needs a meningitis shot!

I am excited that he has a plan and he is so very happy. I can't believe he is all grown up!

The Flu!

Elijah has the flu! He told me he didn't feel good last night and even wanted me to feel his forehead. He didn't feel warm, but boy he sure acted like he didn't feel good. He has had a cough for a few days, but it didn't seem serious. Well, he woke up feeling warm this morning and still not looking good. I did the web check in with CareNow and we got in around 9:30. The flu test came back positive and they did a lung X-ray based on his respirations and heart rate. There is one spot on one of his lungs that is questionable and could be pneumonia. I'll get up tomorrow morning and call his pediatrician and get him in to see her. The clinic wanted to see him again, but said we could follow up with his regular doctor if we wanted, so that is what we will do. He has also had several breathing treatments today.

Poor kid took off his processors two different times to nap. The doctor put him on Tamiflu, an antibiotic and a cough syrup. He is now asleep in his bed, but I'll be listening for him tonight!

TV Show--Parenthood IEPs

I watched last nights Parenthood episode tonight on my DVR. The subject of IEP (Individualized Education Plan) meetings was the story line for the family with Max, who has Aspergers. The writers did a decent job of portraying an IEP meeting and how overwhelming it can be for a family. I really wanted to jump in there and advocate for the two families involved. Max's mom went to an IEP meeting to assist another mom, and felt that she could have done more to help. Max's mom then finds out that Max is being sent to the library to do independent work because his teacher can't teach when Max is in the room. Max's parents are frustrated and don't know what to do or how to advocate for him. I think this part was something the writer's got correct.

Parents do have to educate themselves on the law and what the school needs to provide under IDEA (Individual's with Disabilities Education Act). I am a deaf education teacher I was used to being in an IEP meetings(ARD meeting here in Texas) in that role. As a parent, I find it difficult to know how to handle all of the situations I find myself in with him. I have learned to use the acronym FAPE(Free and Appropriate Education) as well as LRE (Least Restrictive Environment) to my advantage. I have also learned to say things like, "You are making my son fit into a program instead of making the program fit him." This phrase been a good one.

Elijah's next ARD meeting is in April! He is being re-evaluated this year and we will discuss those scores as well as the plan for next year. He has had a good year so far, but has just recently been having some issues. Of course, we just went to the doctor on Monday and NOW he is having problems with touching others. ARGH....I know this is probably a tic, but how to handle it. I am going to email his teacher again and ask for the behavior specialist to come in and see what is going on.

I am glad to see a TV program take on real life issues of families of children with special needs.

TV Show--Parenthood

I just finished watching the Parenthood episode that aired last night (1/9/2014) on NBC. I have been watching those show since it first aired. One of the characters, Max, has Asperger's Syndrome. It has been interesting to see how the writers have handled his character. I believe they have done a very good job portraying him and his family. The parents who first must deal with the diagnosis, working with teachers and administrators and figuring out how to deal with Max and his Asperger's.

Last nights episode was difficult to watch. Max doesn't have any friends in high school and doesn't really fit in with the anyone at school. I sometimes wonder how Elijah REALLY does at school with friends and such. He has been in classes to work on his social skills. He says he sits with his friends at lunch. However, I really wonder HOW does he do in school in the social arena. Elijah is hearing impaired and has Tourette Syndrome, and even with ONLY one of these disabilities he would have social issues, but Elijah has them BOTH.

Elijah wants to be in ROTC when he goes to high school in the Fall of 2015. I know that is 18 months away, but it will be here sooner than I know. I have no doubt that he can join ROTC, but can he really handle the discipline of being in the ROTC. Jacob was in the ROTC for three years in high school. ROTC could be great for Elijah or it could be disastrous, but I will have to let him try.

I am glad that there are shows on TV like Parenthood, so that others can get a glimpse into a family with a child with special needs.