Jacob and Elijah Shaddox are brothers. Jacob is 21 years old and just moved into an apartment with his girlfriend. He graduated from a technical college with an Associate's degree in Computer Maintenance. He works for a school district as a computer technician. Elijah is almost 18 years old. He is hearing impaired, has Tourette Syndrome, OCD and ADHD. He is a junior in high school. Elijah lives with his mom Mary and her wife, his stepmom. Mary has a bachelor's in deaf education and a masters in special education, and is an educational diagnostician. Life is always changing and this blog has chronicled many of these changes and will continue to do so!

Saturday, May 29, 2010

Compassion and Understanding

Today I took Elijah to lunch with my brother, his wife, and their daughter. We went to Chic-fil-a, our new favorite place to eat. There is an indoor play area for the kids and we enjoy the food. It was a little crowded, but not too bad. We had been there for a while eating and Elijah was in the play area. My sister-in-law says, "Elijah just threw a shoe!" so off I went.

I walked into the play area and called Elijah down from the tubes. He had seen me coming and had taken off! I asked him if he had thrown a shoe, and he denied it. He then said the other boy was bothering him. I see a boy across from us putting on his shoes. Another boy said, "he didn't do anything" meaning the other boy. I knew this of course. I asked the boy putting on his shoes if Elijah had thrown the shoes at him. He said yes. I asked Elijah to go and apologize and he did. The boy with the shoes said, "no harm done." Elijah kept playing and the little boy, who I later found out was in 2nd grade said, "He is a good boy." I pointed up towards Elijah and said, "him?" and he said, "yes, he is a good boy." I said, "yes he is, thank you."

Well our conversation didn't end there. The boy with the shoes asked about Elijah's processors. He wanted to know what they were and I explained how they helped him hear. Two other boys joined in our conversation. They were a bit younger than the other boy. The older boy asked if Elijah could talk and I told him YES he could. I asked Elijah to come down and had Elijah tell them where he went to school. I showed the boys how the coils were held on with magnets. They thought that was pertty cool. All in all it was a good conversation.

I looked out into the restaurant and saw a group of adults watching us and figured it was the boys' family. I stepped out and spoke to them. The first thing they asked was if their son was mean to my boy. I told them that NO he was quite the opposite. What a caring young man he was? How he somehow knew Elijah was a bit different, not just because of his cochlear implants, but just in how he acts. I explained his Tourette syndrome, OCD and ADHD a bit. The parents thanked me for stopping to talk to them and I again thanked the boys as they walked up.

As I was sitting with my brother and sister-in-law talking about this, a man walked up and asked me about Elijah's implants. He said he had seen how easy Elijah conversed with the other children while playing and what a blessing the cochlear implants were and I agreed!

All of this made for a very nice day for me. I am usually making excuses and having to explain why Elijah is acting the way he is. Yes, he did throw shoes, but in doing so it opened the door to educating others...and he did apologize. In the past it could have gone the other way. What strides he has made!

Wednesday, May 26, 2010

Summer is Almost Here and an Update!

We are definitely on the countdown for summer. The kids have five more days and I have six more days!!! All of us are very ready for it to get here! We are going to the beach in June and will see family while in Mobile! I have some workshops to attend in July and August and then school starts back up again.

I have acquired some new students from some districts that just joined our day school program and I will be busy getting their info into our database. I will also be working on moving IEPs to our software program. It is not a lot of work and I can spread it out over the summer. I also need to get all of my kids working folders that stay with me in my car in order.

Jacob got commended on his state testing (TAKS here in Texas) for his social studies and passed his Reading and Math. I am very proud of him. This was Elijah's first year to take the test and he took the accomodated TAKS test. He did not pass, but was close in math. He will most likely take the modified test next year. He is having a great week so far this week so things are going well. Jacob is planning on doing ROTC next year...he will be a freshman...and take ASL as his foreign language.

I do hope we can rest and relax this summer. We plan on swimming at my dad's house that is for sure!

Saturday, May 22, 2010

Elijah performing on stage

This is Elijah performing at the Plano Regional Day School for the Deaf annual show. The video is not the greatest and I jostle the camera some, and you can't see his whole body. However, you can hear him very well. I am wearing the microphone that goes with his FM receivers on his cochlear implants, so he can hear. You can hear me telling him to slow down and NOT to play with the microphone. HE LOVES the microphone!

The theme of the show was MOVIES and Elijah is talking about his favorite movie--Garfield--A Tail of Two Kitties. He had a power point he was reading from. His deaf ed. itinerant teacher had helped him with it!

The biggest accomplishmet is that he was able to walk out there and perform with no problem. Meaning he didn't misbehave!!

Thursday, May 20, 2010

What would you do?

I have started watching a TV series on ABC called "What would you do?" The idea is to set up situations and see what people will do in that situation to help another person. They have had women who look abused with an abusive man in a restaurant being yelled at. People have stepped in and tried to help the woman, and then out comes the host to explain what they are really doing. The have set up scenarios where people are being cheated out of money to see if others will step in. It is interesting to watch and I wonder what would I do.

Last nights episode had a young man with Down's Syndrome, who is an actor, sacking groceries at a grocery store. Another actor would come through the line and berate the young man calling him names and stating he was too slow. Also things like, "why do they even let people like that work here?" They used different actors for the customer in line from a woman, to a man and then teenage boys. The majority of the time people did step in and say something to the customer who was berating the sacker. Some people did not, stating they did not know how upset the customer might get and then possibly physcially come after them. This was usually when the customer was the man, a big man, by the way.

As a parent of a special needs child, I think I would step in, but I won't know until it happens and I truly hope it never happens. I hope, we as a society, are better than that. The young actor with Down's Syndrome did a great job and had such a great personality. He even spoke about his disability and advocated for those with Down's Syndrome. I hope I can teach Elijah to advocate for himself as well as this young man did.

Wednesday, May 19, 2010

Cochlear Implants Processors--Health Insurance

This is the Freedom cochlear implant processor which Elijah wears now.

Elijah was implanted back in 2001 with the N24 Cochlear brand implant. When he was first implanted he had a body worn processor(BWP). Which is pictured here below.

He later got a second implant(turn on January 2005) in his other ear and again wore the BWP. There were some had a computer screen which made for easy troubleshooting and the microphone on his ear(looked like a small hearing aid) was very small and light. It was easy for him to wear, but it was bulky. He wore a harnass under his clothes that someone made for us. He loved his "ears" though and wore them daily.

In October of 2006 we were able to upgrade Elijah to the Freedom processor pictured at the top of the page. It was the newest implant available. He did not have the internal part of the Freedom, but the Cochlear comopany makes the processors backwards compatable. Elijah did well with the transition and we liked having the smaller processor. It took a bit to get used too, but overall it was a good move.
This is what the internal part of the cochlear implant looks like.

Cochlear has now come out with the Nucleus5 processor which is compatable with the freedom internal device. Elijah cannot get it yet, but the company is also making his BWPs obsolete, so I called to inquire about trading those in. We are going to trade those in with a $2500 credit towards each Freedom processor. He will then wear those new Freedoms as his primary processors(comes with a 3 year warranty) and have his Freedoms he wears now as his backup processor. I spoke to the insurance company today and they did approve payment on these processors. WOOHOO!! We will have to pay 20% but that is better than paying 100%. We are also getting a $2500 certificate for each processor towards a Nucleus5 processor. It is good for five years and we have to wait for compatability right now anyway. Hopefully within five years we can trade in for those Nucleus5 processors.

This seems like a lot, I know, just to have a child hear but it is worth it. Elijah will now have backup processors which are behind the ear and not body worn processors. We are happy with the freedom processors and would only upgrade because of the size(the new one is a lot slimmer and a little shorter). I am just glad my child can HEAR with his processors. It is such a gift. I wear a bracelet that Cochlear put out that says "Hear Now and Always" and I truly do believe in that. I am thankful for the technology and for the health insurance I have. Is there really any price one can put on being able to hear?

Tuesday, May 18, 2010

In The Blink of an Eye

A friend of mine called me this past Sunday and she was quite shaken. She had taken her three girls, ages 7, 3 and 18 months old to McDonalds to eat. While walking in the parking lot she noticed a car that had pulled in that was still running, and realized he was going to back out. The car backed out quickly as she yelled at her two oldest girls to run and she stepped back, holding the baby. The car came close enough that she reached out her hand and was able to touch it(she wasn't trying to touch it, more like THINK she could actually stop it). The car FLEW out of the parking lot.

She called me as she was sitting in McDonalds trying to calm her nerves. Of course, the thought of her or any of her girls getting hit just made me sick. This car would have probably killed them.

We finished talking and as I got off the phone, I started thinking about how things can change so quickly in our lives. My friend said she almost let the baby walk, but decided to carry her. It is a good thing she did! I have always been over protective of my kids, but it only takes that one instant of not paying attention that can change your life or the lives of those around you. I am also trying to get my almost fourteen year old son, Jacob, to understand that the choices he makes now can affect him the rest of his life.

So much of what we do in life revolves not just about the choices we make, but about the choices others make around us. Sometimes it is just luck or coincidence. I for one though want to always be on alert, watching for those who are not making good choices, so that I can avoid them as best I can. Sometimes you just can't.

Friday, May 14, 2010

Tourette Syndrome Awareness Month

Tomorrow is the beginning of Tourette Syndrome Awareness Month(May 15th-June 15th). My youngest son, Elijah, who is ten years old was diagnosed two years ago with Tourette Syndrome. I am still educating myself about tourettes and the other disorders that go along with it. Elijah also has ADHD, OCD and anxiety. Right now he is doing pretty well and things are improving at school.

Tonight when we went out to eat he had more tics than usual. He was making his motor sound, arghhhhhh. He does it several times, stops, and then starts up again. We got a few looks, but nothing to really notice. He stopped after a bit. We were with my brother, his wife and their daughter. We just ignored it and kept on eating. I often wonder what to do in those situations. It doesn't really bother me, but I would like to educate those around us about why Elijah is doing what he is doing. He is NOT just making noises and he isn't mad. He is just having his tics.

We came home and it was bath time. Oh wow, he cut loose in the bathtub. I call them his "bathroom tics" or his "bang bang tics" because HE BANGS and BANGS on the tub with his hand. Tonight I thought he might take down a wall. I stepped into the bathroom, flicked the lights(he is deaf and didn't have his cochlear implants on), and signed "calm down, no bang bang" and he yells back "they are tics MOM!". I signed, "yea, but quiet, quiet"...meaning calm them down a little and then signed "you break it" meaning the tub. He got it then and calmed his tics a little. I know he can't control them, but he really might just break my tub. There is a small crack in the bottom of the fiberglass tub. He did contintue to bang, but not with as much vigor.

I just bought a flip camera and considered recording his tics in the bathtub, but then thought I might embarass him. I am going to try to get his tics recorded though to show his future teachers and to show the doctor if needed. I may even share them on here for those who don't quite understand tourettes. I hope I can educate others about Tourette's and the assosicated disorders that go with it.

Thursday, May 13, 2010

Three More Weeks!

I am on the countdown! Three more weeks and we leave for the beach. First we drive to my mom's house and stay the night with her and then we leave for Mobile. I can't wait to see my grandmother and other family members there. We then head to the beach for five nights! I am so ready. Elijah absolutely loves the beach. Jacob loves the beach, but is deathly afraid of getting sunburned. I bought my first can of bullfrog sunscreen today. These blue eyed red haired boys just burn so easily. I think the boys will miss our kitties, but they will survive!

Monday, May 10, 2010

The Tenth Good Thing about Barney

Our cat, Ridgeway, died in November 2008. Both Elijah and Jacob had a very hard time with his passing. We had recently gotten a new kitten, named Tiger, because we knew Ridgeway was getting older. We had no idea that within a month of getting the kitten that Ridgeway would have to be put to sleep.

Ridgeway had been our cat before Jacob was even born. Jacob, who was twelve at the time, cried so hard when he found out. He had never known a day without Ridgeway. Elijah, who was eight at the time, cried too, but didn't really understand death. I spoke to a neighbor about it and she suggested the book "The Tenth Good Thing About Barney."

I went out and found the book along with one another book about a pet's death. We read them for several weeks. "The Tenth Good Thing About Barney" was an excellent book. A young boy, whose pet cat had died, listed ten good things about his death, but he had trouble coming up with number ten. He and his mom discuss it throughout the boook and they bury the cat. The boy finally comes up with the Tenth Good Thing about Barney.

Tonight, Elijah called me from his bedroom and as I walked in he said, "Mom, I tell you three good things about Ridgeway," and he did. It was very sweet. I think he is finally coming to terms with Ridgeway's death. Elijah has always done things on his own timetable. If you ever need a book to help a child deal with death, this is an excellent book and one I am going to go look for in Elijah's room so we can read it again.

Sunday, May 9, 2010

Happy Mother's Day

I just wanted to say Happy Mother's Day to all of the moms out there. I had a pretty good day with both my boys. I got to watch a movie this morning, which was nice! The boys and I went out to eat with my brother, sister-in-law and niece! We ate at an Italian restaurant and I brought a delicious piece of cheese cake home that I ate later with a glass of milk.

Elijah made me a mother's book at school and it is just precious. Jacob just gave me a picture he made for me at school. I got a $15 Itunes card and I always enjoy getting one of those.

Being a mom has got to the one of the hardest jobs I have ever done, but also the most rewarding. I have been a single mom now for almost a year and I have survived it and enjoyed it. It has not always been easy, but I am thankful for these two boys everyday. Just a smile from them makes my day.

I am counting the days until we are out for the summer and headed to the beach. I am really looking forward to it!

Saturday, May 8, 2010

Being a Parent

Jacob will be 14 years old this coming July. He got himself into some trouble with two other boys recently and is now computer, no nintendo, no hanging with these other boys and NO staying home alone for long periods of time. He has had to go everywhere that I go when I leave this house. I am even driving him to school in the morning rather than have him ride the bus.

Of course, he hasn't liked it too much but he is taking it in stride. In fact, when we were driving back from a doctor's appointment for Elijah, in heavy traffic, and it seemed like we would never get home, I asked him, "so how do you like being grounded and having to go everywhere with me?" I was shocked by his answer. He said, "It isn't too bad, we get to spend more time together." Now you are probably thinking that I never take this kid anywhere with me, but I am always trying to get him to go places with me. I always want him to go, but don't want to force him if he doesn't want to go off with us, now I think I'll be making him go more. Maybe he thought that if I didn't make this demand of him, that I really didn't care if he went or not.

OH and he is now asking for his computer back, and he still has a few more weeks before he will get that back.

Wednesday, May 5, 2010

Merry Go Round

I sometimes feel like I am on Merry Go Round when it comes to Elijah. He has his UPS and DOWNS and I am usually along for the ride, ready to catch him if or when he falls. He is doing very well at home right now, a bit bossy, but compared to his past behaviors he is much improved. His newest thing is to tell me, “NO WAY!” when I tell him it is time for bed, time for dinner, or just time to do something different than what he is doing. I always give him a reminder of “In five minutes you need to _________.” Transitions can be very difficult for him.

Yesterday at school he had a rough day. It wasn’t one of his most horrible days, but not one of his best days. His teacher emailed me that he had bitten someone in PE. He had just walked right up to this kid and bit them on the arm. She asked if it could be a tic. I decided to call her rather than email her. I called and got clarification that it was a gentle bite, if a bite can be gentle. I explained that he has done this to me at home several times when he is close to me. He never bites hard, but he does bite. He has also grabbed my hand and licked it. Are these tics? I told her I just didn’t know for sure.

I am hoping he had a better day today. We got back to the doctor tomorrow. I lowered his new medication after reading the side effects and talking to his doctor yesterday on the phone. I upped one of his previous meds that we had lowered a few weeks ago. I am hoping we can find that right combination so that he can have better days. The tics are not the problem, except for that biting, it is the other behaviors of being defiant and not following the rules.

One day I might not be there to catch him when he falls, but for now I am ready to do whatever is needed to help him on this journey. I just wish I knew HOW to help him. There are just no easy answers.

Tuesday, May 4, 2010

Thirteen Months--Teacher Story

One January, we returned to school after the Christmas Break. I had not written the date on the board yet. Emily looked up at me and said, “What is the date?” Before I could answer, she said, “Oh I know, it is 13/04/07(13, 04, 07).” She said it just like that. The other students looked at her, but said nothing. I said, “Emily, how many months are in a year?” She said, “twelve.” I then said, “so why did you say 13/04/07?” She looked at me like I was the person who had no idea what I was talking about. I asked her what month it was and she told me "January.". I said "It is the first month of the year. I asked you how many months and you told me twelve. What is the twelth month." She thought about it for a moment and answered, "December." I said, "Well then we start over and what is the first month of this new year?" "January," was her response and then she said..."Oh it is the first month so it is 01/04/07." I nodded my head and said "YES!"

Saturday, May 1, 2010

Changing up meds!

Elijah had a rough week at school compared to previous weeks. We had lowered one of his meds in the morning from 100 mg to 50 mg because the combination of it with a new medicine for tics was making him very sleepy. Well he was more anxious this week and a lot more bossy. Just seemed like things were a bit harder for him. I called the doc and she said that putting him back on 100 mg was probably a good idea.

Well we started off with that this morning and he was SO tired at his scocer game. I also got an email from his teacher about my email informing her of the change. She suggested trying 75 mg, and so I am going to do that. It is a bit of pain though. I have 100 mg tablets I am cutting in half, and I did invest in a pill splitter, to get 50 mg. I still have some 25 mg from a WHILE back so I am combining a 50 with a 25. Simple math, right!

We go in to see the doctor this Thursday, so we can discuss it then and hopefully see if is the combination that will work! At least his tics have been better. He still has them, but they don't seem as bad as they did a few weeks ago!