So Far, So Good!

Elijah had four great days at school. I am hoping I don't jinx it! He had all greens each day except for Tuesday when he had one yellow! It has been two weeks since we increased his medication and I think we are finally seeing that this increase was a good thing. We are continuing with the ticket system at home and I think that being consistent with that has helped. He also earns some gummy bears to put in his ice cream if he has "green" days!

I took him to the movies today as a reward for such a good week. We both enjoyed it and I needed some time with him. Jacob doesn't like to go off to the movies with us!He is a such a teen. He refereed three soccer games today and earned $45. Half of the money went into his savings account and the other half into his PayPal account. He wasn't too excited about earning money, until we set up a PayPal account for him.

Crossing my fingers Elijah continues to have good days and Jacob enjoys his referee job.

Would I Change Anything?

If there was anything I could change for either Jacob or Elijah would I? I can surely say for Jacob, that the answer is a NO! He is such a typical kid and now young man. Now for Elijah.... I wonder? Would I change anything for him if I could? How would this change affect him or me?

Elijah has had such a hard journey. He was born premature and struggled to breathe. He was on oxygen for nine months. He is deaf, but does wonderfully with his CI processors. He has asthma, Tourette Syndrome, OCD and ADHD. He is who he is because of his journey. Would I like the Elijah he would be if I took one of these away. I cannot imagine him as a different person.

Elijah has made me a better person, mother and teacher. When I speak to other parents of deaf children we relate in a way that other teachers can't. When I speak to parents of children who are deaf with other special needs, we make that connection. I have walked a similar path as they have. Our journey's may not be exactly the same, but we share a common thread. I hope this connection to other families helps these families with the choices they are faced with. I hope the stories I share with them help them with their choices.

Would I change who Elijah is? No, I don't think I would. He is who he is and I love him for who he is. He has a heavy burden to carry sometimes, but I will be there to help him along the way.

Parenting a Child with Special Needs

I have been a teacher of the deaf for 21 years now. The past five years, I have been the Lead Teacher of my department, which means I attend a lot more meetings and am not in the classroom full time any more. Almost 12 years ago my son was born prematurely and diagnosed with a hearing loss at the age of five weeks. he recieved his cochlear implants at the age of 18 months and four and half years of age. At the age of five he started on medication for ADHD and at the age of eight he was diagnosed with Tourette Syndrome and OCD. Needless to say I have had my ups and downs. I was well prepared for the deafness but as far as his other issues, well let's just say, it has been a challenge.

Before the divorce, Elijah's dad was a good support to me. It was a trying time though and having a special needs child is never easy on a marriage. Since our divorce, I have pretty much been the only one at home to deal with Elijah on a full time basis. My immediate family does support me emotionally, but they aren't here 24 hours a day seven days a week. Jacob was only 13 at the time and expecting him to be a second parent is not an option. I was lucky to find a great babysitter for Elijah after school who was a very important person in his life for two years.

Last week, when Elijah had that really bad day, I arrived at the school visibly upset. No one likes to hear that staff at a school are afraid of getting hurt by a student that is your kid. The principal was very supportive and during the conversation mentioned that she has thought of coming by and taking Elijah out for ice cream so that I could get some time to myself! I guess you know it is bad, when people offer that. I told her though that I do get out and have some time for myself. The last year has been one of the best years of my life. I have found someone to share my life with. I am not going to share a lot about her, but I want everyone to know that I am no longer alone in my struggles with Elijah. I have someone who is very supportive and who has become a great step parent. I am happy because I have someone who takes care of me and who I can take care of too.

Elijah's dad is also back more in his life, asking more about his doctor's appointments and about school. He has always been there, but he has had to move five hours away to find a better job. The economy is not great, as we all know and sometimes people have to move. He keeps in contact though and I know once things settle down for him he will be there for his boys.

We parents need to make sure we take care of ourselves. I go out and spend time with friends and make sure that I take the time for myself. Please remember that...take time for yourself and for your significant other.

Yesterday was NOT a Good Day!

Yesterday was not a good day for Elijah. As you may remember, I posted about him having some bad days in the last few weeks. He bit another student about two weeks ago and then again this past Wednesday. He spent a day in suspension at school on Thursday. Well, yesterday morning he was already in a mood before he got on the bus. He then went to school and basically spiraled out of control. I got a phone call around 8:30 letting me know what was happening and that he was not calming down. I was asked to come and get him.

Unfortunately I work 40 minutes from him and had driven another 20 minutes away to check on some students, so I was an hour away. The principal understood and told me that she would keep him "safe" until I got there. That told me a lot! I called in to work and told them I would be taking off for the day. I had to call someone else and see if we could reschedule an IEP meeting because I had no one else to send(I am a teacher of the deaf and Federal Law says a deaf ed. teacher has to be at a deaf student's IEP meeting, so they can't have it without me.). Everyone knows how dependable I am and thankfully I have never had to cancel on an IEP meeting for an emergency like this.

I finally start driving his way and on the way called the psychiatrist's office and got a 1:45 pm appointment for that afternoon. I got to the school around 10:00 and saw him in the conference room working with a teacher. The principal saw how upset I was and wanted to know what she could do to help me. We sat and talked for almost an hour so she could give me the whole story. I needed to know what had happened so we could talk to the doctor about it. She was very supportive and I explained that we would be going to the doctor.

Elijah and I got ready to leave and he was perfectly calm. He didn't even act like anything had happened. We came home and had lunch. We talked for a bit and I then I called a good friend to talk. I needed a good talk.

We went and saw the doctor who listened to everything. She said it may be puberty coming on which would require him to need more meds. We upped one of his meds by 0.5 mg and may up it more, if needed. We just have to wait and see.

I had noticed that he seemed to be a bit more agitated in the last week or so and there seemed to be more tics. I added the 0.5 mg today and hopefully we will see some improvement in the next week or so. It is hard to know how long it will take to see the effect of upping his meds and we may need to up it more. I think this is the hardest part of Tourette Syndrome. There are just no easy answers.

On another note, Elijah managed to get up on the stage today at the Regional Day School Program's Performance in front over 250 people and say his poem. He even bowed at the end! He can be such a sweetie, sometimes.

Got the new Controller

We got the new controller and coil yesterday. It was not an easy task. I had to once again call FedEx and have them keep it at the facility so I could pick it up there. I checked on line to see that they had tried to deliver the package, but they didn't leave a note!

I put the new controller and coil on his right ear and now we will see what happens!

Over 10,000 Views

I am at a little over 10,000 views for The Shaddox Boys!!! Woohoo! Another good day for Elijah! Y'all have a good day!

The Case of the Blinking Ear!

I took Elijah to the audiologist for another visit this morning. We discussed his huge MAPPING change that occurred back on Jan. 19th and that he seemed to like Program 2 the best. She checked things out on it and we discussed that IT IS STILL blinking at times, for no apparent reason! She thinks it is a controller or coil issue, so after we left I called Cochlear Americas and they are sending me a new controller and coil.....but let's get back to the visit!

The audiologist then checked his left ear and we decided to REMAP it! She did a whole session with him, which means he had to listen. He wasn't very cooperative, but he finally got his act together. When she was done, we took a look and again there was a HUGE change in his MAP. We put his right ear back on and told him to listen and let us know if he liked it. We turned the left ear on and took off the right ear. He liked it and said it sounded good. She tested him further, by having him listen with the old MAP compared to the new MAP. I said a sentence and she switched the MAPs. It is hard to explain, but he chose the NEW MAP twice in a row. She put in two other MAPs for us to try and put his old MAP in slot 4.

We talked about his right ear again and discussed keeping an eye on it. I told her I would and we left. I really hadn't seen it blink much since Jan. 19th and was hoping all was well. Fastforward to this evening...Elijah and I were playing throwing an Angry Bird stuffed bird back and forth. All of the sudden his right ear started blinking. I asked him if his battery was dead and he said "NO it is bugging me." I motioned him over and told him to hurry. He got to me while it was still blinking and there was NO ERROR message on the screen. It stopped blinking and we talked about it bugging him. He went to sit down and it started blinking AGAIN and again I motioned him over. Again, there was no error message while it was blinking. For once, it blinked several times and not just two or three times. I emailed his audiologist to see what she thinks.

I just checked the FedEx tracking site and Elijah's new coil and controller should be here by tomorrow. I will change them both out and send the other ones back. We will then see if it "bugs" him again! I'll keep y'all posted!

Another Good Week!

Overall, Elijah had another good week at school. Monday was an ALL Green day!! Tuesday through Thursday was a little rough. No aggression, at least, but he did spit, which is a tic, but one he needs to learn to not direct at people and he said ONE bad word, but it was the BIG bad word. He also refused to work yesterday in several classes. We talked last night and he had five out of six greens today on his form and only one YELLOW, with NO screaming/yelling. He earned 175 tickets for today! He was a very happy camper.

His behavior at home has been much better too. I still have to be SO consistent. I can't even bend a little and that can be hard.

We got back to the audiologist on Monday morning and then both boys got to the pulmanologist in the afternoon. It will be a bit of a long day, but I would rather get it all done in one day. The pulmanologist can be a 2-3 hour visit sometimes! UGH! Well worth it to keep the boys healthy, but it can be a long wait. I made the appointment at 1:30 so we would hopefully get done by 4:30.