Locklaces!

Elijah has never learned to tie his shoes. When Jacob was in kindergarten, it was required that he learn to tie his shoes. He worked on it at school and we worked on it at home. Elijah traveled to the Regional Day School Program in another district and they did not require he learn to tie his shoes. We were so busy working on language and doing breathing treatments that we just never got around to teaching him to tie his shoes. I know this sounds like a HUGE excuse, but sometimes other things are more important.

Elijah has been able to get by with Velcro shoes, or the shoes that have laces that are bound at the top with lock that don't require tying. However, as he has gotten older it has gotten harder and harder to find these shoes. Just recently I noticed that he walks and his left foot is leaning in and he is walking more on his arch than on his foot. I decided I needed to find him a good pair of walking shoes, but WHAT would I do about him being able to TIE the shoe.

Many of you may think that I am lazy for not teaching him to tie his shoes. Well, we have had a lot of things that have taken precedent. He has a very low frustration level and gives up easily. Things become a battle with him that escalate into rages and major behavior issues. This is a battle, that I just don't want to fight then OR now.

I called my brother, Jerry, because he had told me about something he had bought to help him tie his shoes. He has cerebral palsy and can only use one hand. He also had never been able to tie his shoes. He found me a link for Locklaces and I ordered a set. They came in the other day, so Elijah and I went out to buy him some shoes. The young man at Dick's sporting good helped us find a pair of shoes that fit him and we brought them home. I read the instruction and got the Locklaces in the shoe. It was easy to lace the shoe and set up the Lock part of it. They are elastic laces and hold these shoe on tightly. I then had Elijah wear the shoes, so I could see how tight he needed them. The laces come really long and you cut them to what you need. I watched him walk around in the shoes and noticed a HUGE improvement in how he walked.

Dick's sells the Locklaces, but they only had neon green, neon orange and neon pink. I was glad I had ordered the white ones online. However, this limited our shoe selection, because we needed shoes that look good with white laces. The white laces did have some black lines in them and the shoes look good! I think next time he needs shoes, I will wait and get the shoes first and then order the laces, unless we find them at the store. My brother told me the laces he has have lasted a year!

Elijah is Going to Camp Next Month

Elijah will be going to a camp for kids with Tourette Syndrome next month. It starts on a Friday afternoon and ends Sunday at noon. I am very excited for him to get to go. We sent all of the paperwork in and got the letter back saying he was going! He is very excited and possibly a bit anxious, but I think it will be good for him. He is maturing quite a bit and wants to act like a BIG boy. The camp is assigning someone to him who knows sign, since they have never had a profoundly deaf kid with cochlear implants before. When his "ears" are off he needs that sign to assist him. He is also still hard to understand when he gets excited, so this will help with any communication breakdowns. It also makes me feel better about sending him off. I worry more about the equipment and people knowing how to assist him with the processors if there are issues.

My honey and I are going to take him down and then stay in a hotel about 45 minutes away and have our own vacation. Jacob will be staying with a friend! He gets his own vacation too!

$2824.00

I just paid $2824 for a two year service agreement plus loss damage coverage for two Freedom processors. I saved $314 by paying for two years rather than paying $1500 for one year for both Freedoms. Elijah has NEVER lost a processor, but as they say never say never. We do get good use our of the service agreement. In the last three months alone we have replaced three coils and two controllers. Hopefully in two years we can upgrade Elijah to the N5 processors. His Freedoms will be five years old by then and most insurance companies will pay for upgrades every five years. When will trade in his older Freedoms that stay in a drawer and are not under a service agreement. If he is able to upgrade to the N5, these will have a three year service agreement and loss/damage. There may even be a new processor in two years.

There is no price that I would not pay for Elijah to hear. I am amazed at the technology and what he has accomplished. At least I can write it off on my income taxes under medical when I file my 2013 income taxes!

JACOB IS DRIVING!

I am sorry I haven't posted sooner! Life has been busy, but JACOB PASSED HIS DRIVING TEST! WOOHOO! He did a great job and has had his license since last Thursday. There are a few laws that he has to abide by that are specifically for teen and this is from the STATE OF TEXAS!

• He can have only one friend in the car at a time. He can have as many family members as he wants, but no friends.
• He cannot drive between 12AM and 5AM  unless it is an emergency.
• He cannot text, call or even hold his phone to look at a text while driving! If he does, then his license is gone...if caught by a police officer.

My partner bought a new car and sold me her car, so he has a car. We had to get it inspected and do some work to it, but he is all set now. He purchased his parking permit yesterday and today was his first day to drive to school. He texted me once he arrived and had a HUGE smile on his face when he arrived home.

I have been searching for MONTHS for an app to put on his phone so that I could TRACK him and make sure he doesn't text or call on his phone while driving. I found one called Canary and it is actually The Canary Project if you look it up online.http://thecanaryproject.com/ Here is a link to their website. You can use it on an Android phone or an iPhone. I set up the account online for free then put the app on Jacob's phone, choosing the teen phone when I opened the app. Once I put the app on I did have to pay a one time $9.99 fee. I then downloaded the app on my phone, choosing the parent phone once I opened the app.  Jacob cannot open the app on his phone unless he has my password. I can then monitor him using the website OR my iPhone. If he travels over 12 MPH and texts or calls I get a text alert. I also get an email alert. If he travels outside of the safe zone I set up on his GEOFENCE, then I get an alert. I can also see where he is, or rather his phone is, any time using the GPS on the app OR on the website.

Overall, I am very pleased with this app. There is no monthly subscription and I have been able to talk to tech support twice when I needed assistance. He can now drive himself to his soccer games that he referees. He arrived home to tell me he needed poster board. I told him he could stop on the way to his friend's house and buy some. I gave him some money and told him I expected change. I can now see on my app that he has arrived at his friend's house. Some people may think I am being over protective, but I want to keep him safe!

What's New in Cochlear Implant Processors?

I subscribe to several blogs and I am including a link to one that shares information about new processors that are coming out for all of the different processor companies.

New Product Announcements!

I am very excited about the new Cochlear America's processor, although it seems to look a lot like the N5. Elijah won't be eligible for an upgrade until 2015, so we will have to just wait until then. Just wanted to share the news!

Elijah and the Alarm Clock

Elijah and my partner were out walking around the block today when they saw a garage sale. They decided to stop and look to see what they had. Elijah found a typical red digital display alarm clock and wanted it. My partner said he could buy it, so they went home and got the $1.00 to purchase it. I arrived home later and he showed me his alarm clock. He said he had it set to go off at 7:00 am. I told him how much I liked it. Later, my partner asked if I had seen what Elijah had bought, and I told her I had. She said she realized he couldn't HEAR the alarm going off in the morning, but he wanted it so badly that she just couldn't say no.

I was just now putting him to bed and he told me again that he had his alarm clock set for 7:00 am. I asked him how he would hear it in the morning and he just looked at me. I could see the realization hitting him that HE WOULDN'T be able to hear the alarm clock, because his processors would not be on his ears. I asked him if he was deaf and he shook his head no. I told him that he was deaf when he wasn't wearing his ears. I then told him that there was a special alarm clock made for people just like him. I told him it would vibrate to wake him up in the morning and we could put it under his pillow. I also told him, he didn't quite need one yet, since he was still living at home, but that we would get him one soon.

Elijah is almost 13 years old and I think it is time to be more honest with him about his hearing. He needs to be able to explain that he is deaf to others when I am not around. This is the reality of raising a child with a disability and I need to prepare him for the real world.

MORE TICS!

OH MY OH MY, those darn tics! Elijah is just making all kinds of noises! I emailed his teacher and two principals tonight giving them a heads up. He is out of school on Monday, but the holiday is over then and back to school on Tuesday. I hate to say it, but the tics were on my last NERVE today.(Hence the cat picture, we love cats!) This may be totally TMI and gross, so please skip ahead to the next paragraph if needed....but one of his tics is SNORTING. He blows his nose out as hard as he can with no Kleenex. He will do it several times in a row. I know this is a tic, but it is a gross and unhygienic tic. I gently inform him that it is not very NICE or CLEAN to have this tic and to try to stop. He will for a while and then there it is again!

I warned the school about this tic in particular, because it is so gross. It also looks very purposeful. I think sometimes they forget he has Tourettes and that means tics. They wax and wane and you just never know when they will hit hard. Elijah has a status sheet that comes home everyday with him, and sometimes there is a note that he was making annoying noises that bothered other students. WELL DUH, might we assume they are tics and keep an eye on them. Might you even ask him if they are tics, because he doesn't lie(I wrote about this in another post, one teacher was just SO SURE that Elijah's cussing was a tic. She assured me it was. I asked him and he admitted he was just saying the words and not a tic....so if he won't lie about that, then why lie about other tics?). I know Tourettes is hard to understand, but I wish his teacher would try to remember that! He doesn't get in trouble, but sometimes the more you ask him to stop the more he will tic. I wanted to give the school a gentle reminder and I suggested they have a plan in place JUST in case these TICS do annoy other kids. Asking him to stop his tics, is like asking someone to stop a sneeze. They can maybe hold the tic in for a bit, but it will come OUT at some point!

Hopefully this phase will pass and things will calm down. I know if it drives me crazy, it must drive him crazy. Tomorrow is another day, right?

Another Milestone for Jacob

Jacob is taking his driving test tomorrow! He was supposed to take it this past Monday, but I didn't read the test appointment reminder email very well. I didn't see we needed to be there an hour ahead of time! We came home and I started looking for another place for him to take the test and we decided to try the new Driver's License Mega Center that was about 30 minutes away. Well, he didn't get to take the driving test on Monday, but we got an appointment for Thursday, TOMORROW! I can hardly believe that by tomorrow afternoon, he may be a driving teen!

Jacob even has a car now! My partner decided to purchase a used car and sold me her old car. I went down yesterday and got the title changed over to me and it now has insurance on it. I am worried about him driving, but also feel like it is a right of passage he needs to go through. He works as a referee and after tomorrow he can now drive himself back and forth to games. He also has to start looking for another job, so he can help pay for his car insurance and gas!

I am a bit worried about throwing Jacob out onto the road. I have been looking at some driving apps that can help me monitor whether or not he is texting or calling while driving. I think I may try CANARY because it is only $9.99 and will send me alerts if Jacob texts or call while driving over 12 MPH. Our car insurance company offers In-Drive, which would get us a 5% discount on his insurance by sending information about his driving to State Farm. For $9.99 a month I can also have alerts sent to me if he is speeding or takes a turn too fast. It isn't that Jacob isn't a good driver, he is, but he is also inexperienced. I don't plan on using this information to punish him, but to open up avenues of discussion about what happened while he was driving.

I am sure my stomach will be in knots as he drives away for the first time. I have to let him leave the nest though, that is part of my job as a mom.

Darn Tics!

Those darn tics are back. Elijah has been making noises all weekend and had chewlery(a type of necklace a person can chew on) around his neck since Saturday. If he doesn't wear the chewlery he will chew a hole in whatever shirt he is wearing. I am fine with the tics, really I am, but at times they can push me over the edge. It is just too much noise at times. I tune them out and don't say anything. I know he can't help it, and I hate that he has to deal with them. At least they are only vocal tics and not too many motor tics. About two weeks ago he was laying on his stomach, with his legs bent at the knees and knocking his ankles together. OUCH! It even sounded like it hurt. I am hoping they calm back down again before he goes back to school. At least we are out for Spring Break.

LABELS!

We live a life in which we are all labeled at one point or another. When we are born, we are labeled as a boy or a girl. We are labeled by our race, hair color, eye color and how big we are and all of this happens on the day we are born. There are many other labels that come later. Some of them are nice to have. Labels that tell us how smart we are or that we are loved by somone. However, many labels that are given to children in school are usually not fun labels. Many of them are generic labels that are used on MANY children. Then there are the labels used in special education and medical professionals.

Elijah was labeled as a premature baby on the day he was born. He then received the label as a child with a hearing loss when he was five weeks old. This was confirmed four weeks later. He went home on oxygen and received the label as medically fragile having a reactive airway. Grant you, he was not as fragile as many children, but he certainly wasn't healthy.  These are the  labels he lived with for a long time. I like to remember that he was and still is a blue eyed red headed precious boy!

Elijah started school at the age of three with the label of auditorially impaired(AI) and wears cochlear implants. Auditorially Impaired is the Federal term used for a hearing imparied child. He started off as a total communication AI student and then later was labeled as an ORAL AI student. He was also a child with behavior issues and later earned the label of ADHD. He started medication and things were OK for about 18 months and then the tics started. At the age of eight he received the label of Tourette Syndrome and a few months later the label of OCD. These were given my medical professional and at school fall under OHI(Other Health Impaired). The school sent forms off to his doctors and one of them decided to put the label of Aspergers on the report. The school called me and DID NOT agree with this label at all and neither did I. I called the doctor and had it removed.

Elijah has lived with these labels most of his life and have overcome many obstacles. We are planning on taking him to a camp for kids with Tourette Syndrome in April. I completed the application and sent it off about two months ago. His doctors then needed to complete a medical form for all of his medications and I just recieved the form from his psychiatrist. All of his labels were listed along with PDD-NOS. This is an acronym for Pervasive Developmental Disorder that is non specific. Basically it is atypical autism. Well, here we go again. I looked up this disorder AGAIN and this is what I found.

As for the other PDD's, diagnosis of PDD-NOS requires the involvement of a team of specialists. The individual needs to undergo a full diagnostic evaluation, including a thorough medical, social, adaptive, motor skills and communication history. Other parts of an assessment can be behavioral rating scales, direct behavioral observations, psychological assessment, educational assessment, communication assessment, and occupational assessment.

I have to say I am more than just a bit irritated with his doctor. She sees him for 15 minutes every two to three months. A full diagnostic evaluation has never been done on him for PDD-NOS or any form of autism. Many hearing impaired children may show symptoms of autism as do some children with Tourette Syndrome. I don't believe hs is PDD-NOS and neither do the deaf educators who have worked with him for YEARS.  This is one label that I am not going to allow to be used with Elijah. Assumptions are made with labels, and he already has way TOO many and doesn't need another one. We go back to his doctor in May, and I guess she and I will need to talk.