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.

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.

Counting the Days

I am counting the days until Summer break. I have 5 1/2 more days with students and then 1 1/2 work days. It will be a busy summer. I am planning on doing some mystery shopping in June and my mom and I are taking Elijah to Alabama to visit the family. My grandmother turned 89 this month and I really want to see her. It has been two years since I have been back home. Jacob is down in Waco for his summer semester at TSTC. It is a full 15 week semester, not summer school which moves at a much faster rate and is only about four weeks. He has already texted me to tell me he needs some help with math when he comes home this weekend.

I got some good news this week! I received a $7,000 scholarship for graduate school. It will cover my summer class that I am taking that starts July 7th and my Fall semester classes. I am going to call Texas Tech and cancel my school loan! This will cover tuition, books, and any other supplies I need. I plan on quitting mystery shopping come July 1st and focus on school and the family. It will be hard to give it up, because I love the thrill of getting good shops and extra pay. Next Fall is my last semester in grad school and I will graduate in December. I will be completing my internship for my certification as an educational diagnostician, so it will be a tough semester, but I know I can focus on school now and still be able to focus on the boys, my honey and the rest of my family! It is really wonderful that this happened, and I feel blessed!

We really aren't doing much except for the trip to Alabama. I have one two day workshop in June and Jacob's girlfriend is going to watch Elijah for me. It is close enough that I will drive back and forth each day. I plan on taking a few days here and there to go to the movies, visit some museums and plan some other activities with Elijah. We are also planning on joining the rec center here in town. It is a good price and I like to go walking there. The library is right next door, so Elijah and I will go and walk and then go to the library. Once my class starts, it is a good place to work and let him hang out in the teen room. He also likes to check out books and read. I want to have him read to me this summer.  Hopefully, my honey will be able to join us on a few of these days when we go to a museum or go shopping!

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!

Update on Us!

We have had a busy few weeks. My honey and I took Elijah down to the weekend Tourette Syndrome camp back in April. He had a wonderful weekend and we had a great time shopping in Brenham. He is so much more social when he is there and seems to get along with everyone just fine. He can't wait to go back again next year. We both have four more weeks of school left and then it is SUMMER TIME!!


Jacob has been home for the last week, but goes back to school tomorrow. He and his girlfriend are going to PROM tonight! I can't wait to see them all dressed up! He starts his summer semester on Monday. It is a full 15 week semester and he should be graduating in May of next year!!


I finished my semester of grad school on May 3rd, but I had already turned everything in by April 10th. I got an A in both classes and will take one class this summer starting July 7th. It will be 13 weeks of a class crammed into about four weeks, but it is doable.  I then have two classes next Fall and will graduate in December.


Elijah will be a freshman next year and wants to join the ROTC. I am going to let him join and see how it goes. Both Jacob and my brother Alex were in ROTC and really liked it. I think it will be good for Elijah and hopefully teach him a lot about responsibility and how to get organized. We shall see!! Changing schools is always a huge transition for any kid, but really seems to be huge for Elijah.


We don't have any big plans for the summer. My mom, Elijah and I are going to travel to Alabama in June. I have a two day workshop in June also. My niece is going to stay with us a few days in June and that will be fun. Jacob will visit during the summer and we will all enjoy the time off.


I am truly counting down these last few weeks of school. I have enjoyed my year teaching at the elementary level, but am ready for the change that is coming next year. I will fill y'all in on that later! It isn't a huge change, but it is a change! The next few weeks will be hectic with a few field trips, a field day (I hope I survive that), and some high school students visiting us at the  elementary school. I am sure it will all move too fast and summer will be here before I know it, at least I hope that is what happens!!

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.

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!

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!

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.

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.

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.

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.

Update on Tics!

Elijah's new tic is still around! He seems to be experiencing a LOT of tics lately, both vocal and motor. He has also been more argumentative with me at home and teachers at school. He has had more issues at school too! We had already increased one of his medications by 0.5 mg in the morning, but I went ahead and called the doctor after another phone call from the school. He is now taking 1.5 mg of this same medication three times a day. Overall, this is an increase of only 1 mg per day. Overall this seems to have helped with his behavior and with tics.

We go back to see this doctor around the middle of January. I am hoping things stay stable between then and now. It is amazing to me how his behavior is tied to his tics, but I know his tics get on his nerves and drive him a little crazy. I know when I have the hiccups for a long period of time, that I am a little snappy with people, so imagine having tics constantly. I also think his tics tend to increase around the holidays, because he is excited about them. He is also out of his routine, which is  never good.

I took him to the movies today and he had several loud tics during the movie. Thankfully, they were spread apart and didn't all happen at once. He does pretty good and I tap his leg so he knows he is being a little loud. Here's hoping these tics calm down for him when we get back into our routine after the holidays!

Merry Christmas!

Merry Christmas from the Shaddox Family!

New Tic

Elijah has a new vocal tic. It is a sound I cannot even explain. His "clearing throat" tic is also back. I wish I could explain this new vocal tic. It is a tone that is at a high pitch and the tone changes. It starts as a low pitch wound and then gets higher. Like a "aaa AAAAAAAA". It is actually a little louder on the second part of the tic along with the higher pitch. Thankfully, this is not a tic he does ALL day. It does come and go. The throat tic also comes and go, but I hear both daily right now. His chewing tic is also pretty intense right now. He actually got his chewelery and used it the other day, with no prompt from me.

The tics don't seem to bother him, as far as I can tell. Right now, the tics aren't bothering me too much. I can usually tolerate them, unless I am under stress, and then the noise just seems to bother me more. I think he has been excited about the holidays and this has caused his tics to increase. All we can do is just keep on keeping on! That is life with Tourette's!