Genetic Testing

I took Elijah into his doctor today for genetic testing. The nurse swabbed both of his cheeks and will send the samples off to the company to have it tested. The testing will show which medications Elijah's body metabolizes better so that the doctor can decide which medications to try with him. It will cost around $300 and I think it is worth a try. Right now he is maxed on some of his medications and the doctor wanted to try a new ADHD medication for his impulsivity, but what to try? It is a guessing game. She did up his intuniv medication by 1 MG and we will see if that helps. We should have the results next week and they will call me to discuss them. Another parent had mentioned genetic testing at the Tourette Syndrome Support Group meeting back on December 12th and said that the results had really helped with medication decisions. I am hoping this helps the doctor to made future decisions about Elijah's medication.  Elijah takes medication for OCD, ADHD and for his tics, and it is always hard to know what is helping him and what isn't. I'll keep you all posted!

Our Christmas Break

Elijah and I are off for two weeks for Christmas break and Jacob will be home for a whole month. My hone still has to work, but has the next three days off! We have actually gotten to sleep in a few mornings and we are enjoying the nice weather.

I completed my Master's Degree in Special Education from Texas Tech University this month. I am not a certified Educational Diagnostician. I am still waiting for my diploma to arrive in the mail! I can't wait to get it. I was able to print my certification out on the TEA website, and that definitely made it feel more real. I can't believe I have my master's degree! Jacob has only one more semester left in school and he will graduate with his associate's degree in May of next year!

Elijah is doing well. We went to see his doctor for his Tourette Syndrome, OCD and ADHD. She got to see a lot of his impulsivity at this visit. He was persistent at trying to get his way when she tried to talk to him. We are changing his medication a bit, and will go back in about six weeks. She mentioned a genetic test that might help pinpoint which medications would work best for him. The interesting thing, is this was mentioned at the Tourette Support Group meeting we attended back on Dec. 12th. I called the genetic company, and our insurance is not on their list yet, but I was assured the out of cost for me would not exceed an amount that I am willing to pay. I am going to take him next week for a cheek swab and then see what we can find out. The family at the support group meeting said that when they had the testing done, they learned a lot about the medications that would help their son and it has been very helpful. The doctor wants to possibly change his ADHD medication, but it is hard to know what to change him too, but hopefully this testing will help. I am excited about it, but don't want to get too excited

We are very excited about Christmas. Elijah got a new bed, which my hone, Jacob and I put together yesterday. Elijah helped some, but it was a small room and we needed all the room we could get to put the bed together. He did run some things back and forth for us and keep an eye on our progress. He was so excited to get his bed. Jacob's big gift is the car he is now driving. I have a few surprises for both boys. All of my other shopping is pretty much done. I have a few more things to pack. My honey and I want to go shopping and look at some jewelry. We just aren't sure if we want to fight the crowds tomorrow.

We have also been busy baking. I have been making snow ball cookies and will be making pralines later this week. We have also been making truffles! Jacob and Elijah love to help make truffles.

TRUFFLES

 My honey and I roll out the truffles and then put them in the sprinkles. The boys are in charge of making sure the truffles are covered in sprinkles.  They then put them in the mini muffin cups. Every 10th truffles requires a taste test for quality control and we each take our turn testing the truffles. We let them know what time we will be making truffles and the boys make sure they are there, or they know they miss out. We have fun as we make the truffles and it is a nice time to talk! We have made several batches of truffles.



Jacob and Elijah making truffles.

Today my nephew and niece came over and we made Christmas cookies. This is something else I enjoy doing this time of year. We had a lot of fun and the kids got to cut out cookies, bake them, and then decorate them. We use sprinkles on the cookies as well! My honey also has some Christmas favorites she likes to bake. We have been baking for several months. Elijah takes treats to all of his teachers and I hand treats out to my staff.


I am looking forward to 2016. I can't believe how much has happened this past year!! I hope you all have a very Merry Christmas!


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.

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.

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!

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!

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!

Tourette Support Group--Perot Museum

Elijah and I went with our Tourette Support Group to the Perot Museum today in Dallas. I have been hearing great things about this museum and it was definitely worth the trip. Here are some pics from the visit! Elijah had a great time! We were there for 2 hours.

Elijah and the moon!

 



taken from the upper floor



Checking out some gems!

it sure is big

checking it out.

having fun!



driving the robot

what a big dinosaur?

Time for an Update

Wow, I just looked at my last post and it was done several weeks ago! I have been so busy with work and grad school! I am happy to say that grad school is going well. I am ahead in both of my classes with my assignments. I have five projects that need to be completed in the next few weeks, but I think I have a handle on them. I really only have ONE more assignment that needs to be done!

Jacob continues to work at a grocery store each weekend. He still likes his computer maintenance class. He will be applying to Texas State Technical College next month! We then need to decide about housing! WOW! His senior year seems to be flying by already.

Elijah is still doing well. He has had a few minor issues at school, but when you compare them to what has happened in the past they are really minor! He is really into Pokémon books and loves to read! It is cute to see him with his nose in a book all excited about what he is reading. He and I went to Tourette Support Group meeting this past weekend and he had an awesome time. He call them the "tic meetings"! Next month we are going to the Perot Museum with the group!

Work keeps me busy, but thing seem to be slowing a down a little. I'll take whatever I can get. The weather has turned cooler and we are all enjoying that. My honey is working a LOT of late nights, and I wish I saw her more. We have plans to go out to dinner with a friend on Sunday afternoon, so that will be nice!

I'll try to post more often, but really there isn't much going on but work and school for all of us!

First Week of School for ALL of Us!

Jacob, Elijah and I all started school this past Monday. Now, I am a teacher, so many of you may think that I just went back to teaching. I also started GRAD school this past Monday online through Texas Tech! I didn't even get to look at my assignments until Monday night, and by then I thought I was crazy for even trying.

Let's backtrack a little, though. Jacob had a great start to school. He is now OFFICIALLY a SENIOR! How did that happen?? He likes all of his classes and really likes his computer maintenance class. He gets out of school at 2:30 on Tuesdays and Thursdays! He is still working at Albertsons, but only two days a week!

Elijah started seventh grade at the junior high school. He also had a great first week of school. He is using his status sheet again, and had NO REDS! He can earn a green, yellow or red for each class. If he gets all greens he can have the iPad that night. We also count the number of greens he gets each week and he can earn a trip to SWEET FROG for frozen yogurt or something else we decide on!

Now, let's get back to me! I rarely get to talk about ME! I am taking two online classes through Texas Tech to earn my Masters in Special Education and Diagnostician's Certificate! I am finding both classes very interesting. As of today, I have all of my lessons for this week turned in and have started my lessons for next week! My plan is to stay ahead, so that way I don't have to rush! I have observation hours I need to complete, but can use all of my hours from teaching last year towards that, so that is a load off of my mind.

I am so caught up this morning, that I even worked on a Power Point lesson for one of the new deaf ed. teachers in my district. I'll be home this morning, and then Elijah and I are going to the library this afternoon. I figure I can work there on my laptop and he can play in the Teen Center. It works out good for both of us!

I'll try to keep y'all posted on how we are doing, but if you don't hear much from me then I AM BUSY!

Having a Schedule

Tomorrow is the big day that I go back to work. Jacob and Elijah still have one more week until school starts. Jacob will be staying home with Elijah to babysit! I sat down this morning and made out a daily schedule for Elijah. He does much better at home, if he has a schedule. Jacob has even agreed to play the Wii with Elijah twice a day! Elijah will be sure that Jacob sticks to the schedule. We even write in lunch and a snack time!

Elijah also has a schedule at school he follows. When I met with his principals, I let them know that on days that the schedule changes, they need to let Elijah know a day ahead of time. He knows how to tell time, and he doesn't like it when his schedule changes. Some people may think it is a hassle to have to do all of these extra things for Elijah, but I am glad I finally have figured him out! I am sure I will have more figuring out to do in the future. OH and his chewing tic is back. He is munching down on chewelry.

Graduate School

Today's blog is more of an update on ME! I am returning to college and will be working on my Masters in Special Education focusing on becoming a diagnostician. I had been wanting to return to school for several years, but had never followed through. Now that the boys are older and Elijah is more mature(I hope!), I can finally focus on me a bit. I also wasn't sure what I wanted to study if I returned to school, so that had kept me from pursuing a Masters.

I did some research and found that I could attend Texas Tech online and complete my Masters in three years. I can do it in two and a half if I take two classes for one summer. I decided to focus on becoming a diagnostician, because there are very few, if any, diagnosticians in our state that know sign language and who have an understanding of how deaf kids function. I have worked with some great diagnosticians, but there is a piece missing when an interpreter has to be used.

I am excited about starting my online classes on August 26th. I have ordered my books and am all registered. I applied for financial aid and received a grant and a loan. Jacob is going to be a senior and Elijah will be in seventh grade. It will be a very busy year, but in the long run, I think this will give me many more options in my career.  I will let y'all know how it is going!

Igneous Rock

One things that amazes me about Elijah is how well he learns new vocabulary words. He is a deaf child, who does wear cochlear implants, who has a strong vocabulary. Many of the words he uses, I have not taught him. He has learned them at school or incidentally through experiences in everyday life.

A few weeks ago I wrote a blog post about him telling me about obsidian rocks. Well, the other day we were out driving and I asked him again about studying rocks. I asked him what his favorite rock was and he told me obsidian rock. He then added, "It is an ignus rock." I then said, "An igneous rock?" and he replied with "YES!" All I can say is WOW! His pronunciations aren't always great, but he does know what he is talking about. I wasn't sure if obsidian rock was an igneous rock so I looked it up and of course, Elijah was correct!

Elijah is so very smart, and I am hoping that he will show it more in school and in his life. He loves science, so of course, he has soaked in this vocabulary. However, he hates doing homework, so he doesn't want to work on any school work. ARGH! Not good for someone who wants to study rocks and go to college!

We will be visiting his junior high school in a little over a week. Due to some rezoning of the school district, he will be attending a different school than we had planned on at his ARD. I am going to be sure to tell them about his love for science!

Sometimes.....

Sometimes, I wish Elijah was just deaf. Dealing with his deafness has been relatively easy, when compared to dealing with his behavior due to his Tourette Syndrome, OCD and ADHD issues. Most people understand that he is deaf. His cochlear implant processor are a clear indication that he can't hear. However, he hears everything while wearing them and does pretty well with communication. Explaining his other issues is more difficult sometimes.

Just yesterday we went to the library. They have a teen room that he enjoys going to and I have let him have some independence and let him go by himself. They have video games and laptops the kids can use. I spend about 20 minutes in the recreation center working out and then check on him. I then stay in the library so I can keep an eye on him. I usually check on him after about 45 minutes and then we head home. A few days ago, when I entered, he was being asked to be quiet. OK, no big deal. We discussed it and how he needs to behave. Well, yesterday they moved the Teen room to a larger room. They had board games, along with the video games, a raffle, and some snacks. I checked on him after about 20 minutes and he was doing fine. I then told one of the librarians where I would be, and went to read some of the newspapers. I came back after about 30 minutes and started looking for him. Well, one of the librarians found me. They told me he was a bit aggressive, pushing some other kids. He didn't understand that he couldn't just have one of the raffle items. He was now crying and trying to get his way using tears. He does get a bit of sympathy due to his deafness and people will give him a little leeway, but only so far. I thanked the librarians and we left.

Elijah and I talked about his behavior. I told him that he could no longer stay in the teen room while I went to the recreation center. I told him we could go to the rec center together and then I would go to the library with him. I would let him go in the teen room alone, but check on him every ten minutes. This would allow him to "practice" how to behave. He could stay for 30 minutes and then we would visit on another day. I have found that if he practices an activity, he does better. We can then move up to me checking on him every 15 minutes and so one. We can then work on him staying for 45 minutes.

When he has done well in the teen center, I come in and he is playing with other kids. No one has teased him or made him feel uncomfortable. I am glad this is a "safe" place for him to play, but it also not a daycare. As his mom, I have to help him learn to be around others. The only way his behavior can improve is if he practices how to behave and learns what is acceptable.

I really don't mind having this "duty" as his mom, but there are days when I wish I could just be a typical mom and not have to PLAN all of this out. I love him though, and he is worth it!

Elijah is GROWING!

I took Elijah to see the endocrinologist yesterday and it was a GREAT visit. He has grown two inches since December and is definitely in puberty! The doctor said this was exactly what he had hoped to see when we came in. He said that we don't need to come back in for any more visits. Finally, one less specialist to see! The doctor also said he expected Elijah to reach the height of 5 feet 8 inches to 5 feet 9 inches! That is as tall as Jacob!

Elijah is also has the appetite of a teenager. He is eating hamburgers, ham, cheese, pork, and many other things that he has NEVER eaten before! He helped mow the yard last weekend and acting more mature, at least some of the time.

The visit to the doctor was a quick and Elijah was very happy that he didn't have to get any SHOTS! That is all he was worried about!

Lot's of Noise!

Tics are back in abundance. Elijah has been making noises now for two days and chewing on his shirts again. He is now wearing his chewlery(pictured left, he uses the larger necklace one), so he doesn't chew a hole through this shirt. The noises aren't too bad, but I have had to remove myself from the living room a few times. There are a lot of loud raspberry types of sounds and loud sighs. It will stop for a bit and then start back up again. I don't know how it doesn't drive him crazy.

He is also letting the coil on his left ear processor dangle a lot. He goes through phases where he does this. If I ask him if he wants to take off his left "ear" he says no, so not sure why he lets it dangle. He can't hear without the coil on his head.

State Testing and Summer is Coming

Here in Texas we have the TAKS and STAAR testing for our state testing. Such fun acronyms. Jacob took the TAKS test this year and his Junior class is the last group to take the TAKS. He passes his English/Language Arts, Science, Social Studies and Math tests. He got commended on the English/Language Arts and the Social Studies test and even got a perfect score on the Social Studies test.

A few years ago the state decided to change the TAKS to the STAAR test and make it even more rigorous. Elijah took the STAAR Modified test, since he is in resource classes. The modified test is on grade level, but has fewer answer choices and the reading passages are broken into smaller passages. Elijah passed his math test and almost passed his reading test. I think he has the skills needed to pass the reading test, but he rushes and doesn't put much effort into the test.

With all of that being said, Elijah has many more years of STAAR testing and Jacob is thankfully all done. He is on track for graduation next year!

We don't have too much going on this summer. Elijah and I are going to Austin in two weeks for a Family Weekend Retreat at the Texas School for the Deaf. We will then go and see my sister for a few days. Jacob is staying home, because he is no employed at a grocery store and will hopefully be working while I am gone. My partner is staying in town too, so he won't be home alone. Jacob and I will make a trip to Waxahachie in July to the Texas State Technical Institute to see what they have to offer. He wants to go to school there after graduation. We will be swimming and going to movies this summer too. There are a few doctor's appointments each month, but nothing too horrible! I will also be doing my mystery shopping to make some extra money. I am blocking out two days a week though, so I make sure to spend time with the boys and RELAX!

A Converstaion with Elijah

Elijah and I were on our way to a doctor's appointment yesterday and below is a conversation we had:

Mom: Elijah, what is your favorite subject in school?
Elijah: Science
Mom: Oh really, well what do you want to be when you grow up?
Elijah: study rocks
Mom: You want to study rocks?
Elijah: yea, there is black rock....ossisian(approximation of what he said)
Mom: what kind of rock?
Elijah: Ossisan
Mom: Obsidian rock
Elijah: yea, the rock made from lava and cool water.
Mom: oh, well how do you get that kind of job?
Elijah: go to college.
                                                           
We then practiced how to say obsidian several time, using visual phonics. However, during all of this I was just amazed at his vocabulary. I even looked up obsidian rock and we were correct....meaning I was able to guess what he said from his speech approximation. Finally, teaching high school science paid off for me!! He picks up new vocabulary so easily. We do have to work on articulation, but he gives me enough information to work with.

Tourette Syndrome Awareness Month

Yesterday was the start of Tourette Syndrome Awareness Month! As many of you know, Elijah has Tourette Syndrome. It is a very confusing thing to try to explain to people. Elijah doesn't have many tics, but when he does they can be very intense. He also has OCD and ADHD which are two co-morbid disorders associated with Tourette Syndrome. I would say these two things give him more trouble than the tics do.

I am trying to educate more and more people about Tourette Syndrome. Awareness is the key!

More Pictures from Camp!

Here are some more pictures of Elijah at the Tourette's Camp.



He is very proud here!



Painting a bird house!

Elijah at the top!

Climbing HIGH!

 



OH My what a big SNAKE!