Results!

The doctor called with the results of Elijah's genetic testing. It seems that he does metabolize some of his meds differently than others. This means he needs a high dosage of these medicines, which he is already on. The doctor said that it explains why he needs these larger doses that other people don't need. She doesn't want to change any of his medications at this point, but we had already changed one of his ADHD medications by increasing it. We go back on Feb. 2nd to discuss how he is doing. I am not sure if she will want to make changes then or not. Overall, I am glad we did the testing. It helps explain why he needs these larger dosages of medicines. Hopefully we can continue to use this information to assist with future decisions.

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!


Teaching Elijah to Tie His Shoes

Elijah is 15 years old and up until yesterday did not know how to tie his shoes. How could this happen you wonder? When Jacob started kindergarten, we were told part of the curriculum was that he would need to learn to tie his shoes. We practiced at home and he practiced at school. He learned to tie his shoes and that was that.

When Elijah was born, there were other things to worry about and the least of my worries was him learning to tie his shoes. He spent four weeks in the NICU and then four weeks in the special care nursery. He came home on oxygen and stayed on oxygen for the next seven months. I spent the winter keeping him healthy and alive. From that point on the focus was on his lungs and his deafness. I was constantly taking care of him, Jacob, my husband, trying to work and trying to find answers on how to help Elijah.

Elijah started school at three in a deaf education preschool classroom in a district that was not in the city we lived in. He started in a signing classroom and then moved to an oral classroom. He had been implanted at 18 months and then in the middle of his second year of pre-k he got his second implant. My focus was still on his lungs as he could get sick quite quickly and on him learning to listen and speak.

Elijah started kindergarten in another district to receive services from a deaf education teacher in a deaf education classroom. Learning to tie his shoes was not on the curriculum and I didn't have time to teach him. This may sound like I was lazy, but that is far from the case. I had been taking him to auditory verbal therapy from the time he was 18 months old through 1st grade once week. His dad took him for another visit each week.  We needed time for therapy at home, homework, my prep for teaching and to hopefully have some fun in there somewhere. When Elijah was in 1st grade he started with occupational therapy for some fine motor issues. Learning to tie his shoes was not a priority. When we couldn't find Velcro shoes I bought LockLaces to uses in his shoes. He also gets frustrated really easily so it was just easier to use the LockLaces.

What has changed and why does Elijah need to learn to tie his shoes? Elijah wants to be in the ROTC this coming school year when he enters high school. Once he is fitted for his uniform he will be required to wear it once a week, and this means dress shoes. Thankfully, all of this is provided by the school at no cost, but he will need to know how to ties his shoes. I will leave in the morning before he is quite dressed and ready and my honey doesn't want to be tying the shoes of a 15 year old boy each morning who isn't always the most cooperative on a good day.

Elijah and I spent about 30 minutes yesterday working on him learning to tie his shoes, and me having to really refine the steps as I tie my shoes without even thinking. He stuck with it and by the end of the 30 minutes could tie a shoe with some prompts from me. We practiced again before he went to bed, again this morning and once again this afternoon. He can now tie a shoe but it still requires a great deal of concentration on his part. We will practice every day for the next three weeks and even after school starts. I am proud of him. It didn't take as long as I thought for him to be able to complete the steps and tie a shoe. Now he just needs to get it more automatic and refine his methods.

Oh and he is a lefty, so I had to tie a shoe using my left hand as my dominate hand....well that gave me some perspective, because I really had to THINK about how to tie the shoe when I was using my left hand.

Elijah's Tics are UP!

Elijah's tics seem to have increased in the last few days. Thankfully, he doesn't have many oral and/or motor tics, but when they appear, boy do they appear. I have heard a lot of "HMMMM" and "HMMM HMMMMMMM". It is hard to explain, but it can be constant and after a while the tic can grate on your nerves. Another vocal tic he is doing is a loud SIGH or GRUNT type of sound. Again, it is hard to explain. The other tic I noticed today was him licking his hands and then whipping his face with his hands. This is one of his older tics that I have not seen in a LONG time.  One time, he was riding on the bottom of a grocery cart and he actually licked his hands and ran them on the floor, then went to LICK them. Let's just say, I stopped him in time. The licking can be a CONSTANT TIC for him when it starts. He has also been a bit more argumentative this weekend, which usually happens when his tics increase. I am sure it is because the tics bother him more than he lets on.

I just never know when the tics will start or how long they will last. They just happen and then they are just gone or at least occur less often! If he weren't on his medication then I am sure the tics would happen more often and be more severe!

Snow Days!

Elijah, my hone and I have all been home for the last two days due to the ice. School was cancelled for both Elijah and I. My honey cancelled her classes, because she didn't want to drive out in the ice and I don't blame her! I just found out that my school district has a two hour delay tomorrow morning. Now, being home has been nice. We have slept in and made a nice dessert today. I even got a nap and also got ahead on several grad school assignments.

However, being stuck home with a child who has OCD and tics can be a challenge. Elijah was determined he was going to play outside yesterday. First of all, it was ICE not snow and secondly HE has a nasty cough. He got breathing treatments every three hours yesterday and today. He would NOT drop it yesterday and kept trying to sneak out. He just had it stuck in his head that HE HAD to go outside and play. The tics have not been too bad, but there were a few times I had to ask him to go to his room to watch TV. I could only take the noise for so long and my computer is in the den where I do my grad school work. This only happened once yesterday and once today, so overall it wasn't too bad. I also limit his time with electronics (iPad, Nintendo DS and Wii-U) so he was BORED quite a bit. I played with him some, but there is only so much we could do!

Of course, now Elijah is determined that there will be NO school tomorrow. He is even arguing with me about it. I have remained calm and reminded him that the decision has not been made and we will get up in the morning and see what the news has to say. The school district will call me if there is a late start or cancellation. I am hoping he just doesn't argue with me in the morning and then have his bad attitude carry over into school. At least there are only three days left this week.

Turkey Bacon

When Elijah was very young, I worried the child would be TOO skinny. He just never seemed to gain any weight or to grow taller. I took him to an endocrinologist and he was behind the curve when it came to growth, but the doctor thought we should wait and see if he would catch up to his peers. He did and is finally growing TALLER.

 Unfortunately, many of the medications the takes for Tourette Syndrome, OCD and ADHD have cause him to EAT, and now that he is 14 he is really EATING. We got him walking over the summer and started counting calories, and he lost 10 pounds. Overall, he is doing well and we monitor what he eats. However, when he is very hungry he eats and eats whatever is around. He has been known to eat a whole package of luncheon meat or a package of pepperoni in the fridge. We recently bought a small box to lock up a few things in the refrigerator, for two reasons. He cannot just EAT all the time, or he will really gain weight and he has to learn some self control. We also keep the freezer in the garage locked.


Some of you may think I am a mean mom! Well, my honey found an empty package of TURKEY BACON in the fridge today. There had been about 3 slices left two days ago. He stated that he had eaten it. Upon further questioning, I learned that he ate it RAW. OH GROSS....that is all I have to say to that. Later tonight I was putting clean sheets on his bed when I reached down between the bed and the wall to grab a few stuffed animals. I found two bowls, several dried up orange peels and CHOPPED PECANS. We found the empty bag in the fridge when we went to look. Somehow he had grabbed the bag of pecans and spilled all of them between the wall and the fridge. We had not even noticed they were gone, because we use SO many pecans during the holidays for baking that we can't keep track of them between us. I found a LOT of pecans under his bed and we are going to flip the mattress off tomorrow to see what else we can find. Pecans are expensive, and he didn't even eat them, he wasted them. I also don't think he is hungry most of the time, but thinks he is hungry due to the meds. The doctor told me kids like him on these meds will eat trash out of a trash can. I didn't really believe him, until Elijah ate RAW TURKEY BACON! YUCK!

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.

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.

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!

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.

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!

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!