Medication

Elijah takes a great deal of medication to address his Tourette Syndrome, OCD and ADHD. He also takes medication for his asthma. We recently changed his ADHD medication and he has been much calmer and more focused. We have noticed a significant change at home and we were glad to see that he had two very good days since we went back to school this past Monday.

Elijah brings home a status sheet each day that lists each class period. He can earn GREEN which means he behaved, a YELLOW which means he needed prompts and behavior was not so good, or a RED which means he had a really hard time in that class and there was probably a trip to the office to calm down. Elijah had ALL GREENS for the last two days. He was so proud of himself. Today he had six greens and one red. He had an extreme meltdown after lunch and his teacher had emailed me. She was curious to know if I might know what set him off.  I really had no idea. She also mentioned he had a bit of a hard time in PE and maybe that started it. Now Elijah gets NO iPad, nintendo or Wii during the school week. He had purchased a mini iPad of his own(saving for a long time!) and I told him if he had an ALL green day he could have 30 min on the iPad. I was shocked that he had had two all green days.....he had trouble getting even four or five greens in one day for the last few months. I thought maybe he was worried about getting the iPad and so that caused the melt down.

Well, later tonight, he went to take his evening medication and he says, "Mom, my Tuesday medicine is still in here." I went and looked and sure enough he had not take his medication last night. I always remind him to take it and he always goes and takes it. I remember reminding him last night, but I had not double checked to make sure he took it. I emailed his teacher to let her know that he had not taken his medication last night and this was probably the reason he had the melt down.

I know there may be many people out there who don't believe in medicating children OR adults, but Elijah couldn't function in the world if he didn't have his medication to support him!

Dealing with a Special Needs Child

This is a link to a blog titled, "I am Adam Lanza's Mother: A Mom's Perspective on the Mental Illness Conversation in America."

http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html

I read this blog and thought it was very well written. I hate to say, that since the shooting in Connecticut I have thought of nothing else then could this be my son? Elijah has a neurological condition and his brain doesn't always work right. He can get angry at time and have full rages. I don't share this too often on this blog, because it is hard to talk about. He takes four different medications in the morning and then two at night to help him with his implusivity and his tics. People with Tourettes can have Tourette Storms--he has trouble controlling his anger and when he is in the middle of one of these storms, there is no reasoning with him.

Thankfully, these storms do not happen very often and very rarely happen at home. When he is at home he is in his most comfortable place and there are not as many demands as there are at school. These storms seem to happen at school and we can go months without one and then when he has one it is out of the blue. When he does have one it is a lot of yelling and kicking at walls. He has been known to bite objects and people. He may also spit at people.

We manage as best we can with medication. I run a strict household with written rules. He has no access to the iPad, computers or video games during the week. He gets limited amounts of these things on the weekend. Many people may think I am too strict with him, but they don't understand. We don't go places during the week so we aren't out late at night. He needs to be in bed by 8:00 if it is a school night.

When I hear other parent's stories, I am thankful that Elijah's problems don't seem too severe, but then when it flares up I am saddened. At times, I wonder if I can continue, but there is no other choice. I am thankful for my partner and for others in my family who support me emotionally. Jacob is an awesome big brother, but even he has his limits.

I do love my little man though and we will keep on keeping on....it will get better.

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.

Update on boys and school!

Well both boys have been back to school for two weeks now. Jacob got his ROTC uniform switched out for a bit larger size so he is set and ready to wear it when the time comes. We went to Meet the Teacher the other night and I got to meet most of his teachers. They spoke well of him and so far he is doing well in school. He is a sophomore this year and is having to shave a few times a week!

Elijah is in 5th grade and attending an intermediate school. He was in the behavior program for the last two and a half years at the elementary school. Needless to say this is a HUGE change for him. He is riding the bus to and from school. An aide meets him and several other kids at the school and they wait in the library for school to start. He has two resource classes(English and Math) and is in inclusion for Science and Social Studies. He has had a few behavior challenges. The teachers have been great at communicating with me as have both of the principals.

He did spit at several kids at lunch the other day. The assistant principal called and when I told her it was a tic, I could her the disbelief in her voice. We talked and then when I arrived home I emailed the principal. The school LSSP(psychologist) happened to call the next day and we spoke for quite some time. She agreed that the spitting was a tic and she would talk to both principals the next day. She asked lots of good questions and will be leading a workshop for Elijah's teachers next week. The LSSP asked me what I really wanted the teachers to get out of this workshop and I told her that Tourette's is not just about tics, it has many co morbid disorders. We also discussed how Elijah's hearing loss affects his communication in regards to his tourette's syndrome. Elijah is a good communicator but not great at explaining how his tics affect him.

I have to say though, that overall I am pleased with how the school year has started. I am sure there will be some issues during this school year, but hopefully we can all work together to ensure that Elijah has a good year!

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!

Looking Back

I was talking to a mom today of a child with a hearing loss. We were discussing cohclear implants and the choices that lay ahead for this family. After getting off the phone I started thinking of how far Elijah has come.

When I brought him home from the hospital he weighted five pounds nine ounces and needed oxygen. He was born eight weeks premature and was very sick for several weeks. He is now 4 ft. 2 inches tall and weighes 75 pounds. His lungs were weak for a long time, but he is very healthy now. He still sees a pulmanologist though and takes meds for his asthma. He failed his newborn hearing screening five weeks after his birth when he was being discharged from the hospital. He didn't even start talking until he was almost three years old, but did have signs prior to that. He was four before he was talking well. He now talks all the time and I wish I could have some peace and quiet. The day I brought him home, I was so overwhelmed by this small baby and now it seems like time has passed so quickly. We have new challenges with his tourette syndrome, OCD, ADHD and anxiety but I believe we are on a good path right now.

Jacob has changed so much in the last year too. He is now taller than me standing 5 foot 6 inches tall. He has this thick red hair that is just gorgeous and has the teen attitude too. He was sometimes the forgotten child, because his younger brother took up so much of my time. I think he has turned out OK though. I wish I could rewind time though and change a few things with him, but I'll just have to do my best right now with him.

I just remind myself that life is a journey and you never know where it may take you!

Don't Judge Me

Someone posted about the Medicaid buy in program on a local message board for our town. I posted some information on it. Someone suggested I try CHIPS for my son(a buy in insurance program) but he doesn't qualify because I have insurance on him. Plus, it isn't the best of insurance as many doctors don't take it. I posted that I really just needed assistance with the meds since Elijah takes so many medications and they can get expensive. Plust the fact, I am only looking for help with copays since we have insurance and medicaid could act as a secondary insurance.

Well, I guess someone took offense, because they posted "so you expect the taxpayers to pay for your medicaitons?" First of all, it is only for Elijah's meds, not mine or Jacob's meds. Secondly, people who have never dealt with a disabled child, especially one with multiples sometimes hidden disablities, should not judge others on their need for asssistance. Oh it just burned me this morning.

I know there are children with much more severe disablities, but his nuerological disability(tourette syndrome, OCD and ADHD) should not be taken lightly either. It interferes with how he functions in the world and how he interacts with people. If he doesn't take his meds, he cannot function in society. I would like nothing better than for him NOT to need these medicaitons, but he cannot function without them. The amount of money I spend on meds is outrageous. I never even applied for medicaid or SSI until my husband left.Plus he is asthmatic and deaf.

I guess some people just don't get it.

Tourette Syndrome

As I said before, Elijah was diagnosed with Tourette syndrome(TS) in July of 2008. He started school that year in the Plano Regional Day School Program for the Deaf. He had a great first 2 weeks of school and we added TS and OCD under Other Health Impaired to his list of disabilities(OHI).

Behavior soon became a problem though. He was having some tics at school, but he was always being bossy. He was also hitting and kicking others. We had an ARD(IEP) meeting in October and it was decided a 5 day observation would be done. We met again in November and from the information given we decided that language development(his deafness) was not as big an issue as his behavior. He didn't work well in small or large groups and he didn't like having an aide with him. We decided to bring him back to our home district in Wylie and put him in their behavior program.

We waited 2 weeks to make the move, so that transportation could get put in place and Elijah's dad could change his schedule and be home to meet the bus.

Elijah started in Wylie on Dec. 1st. I would be able to drive him to school each morning and he would ride the bus home. Looking back now, it was a good move, but a hard one. It was not easy for him. He really wanted his OWN way and didn't like having to be told what to do. Over the next few months he became more compliant but it was a lot of work at school and at home. We are still working on it now, but he is so much better.

Elijah is now still in the behavior program. We are having an ARD(IEP) meeting in a few weeks to discuss his placement and maybe changing his PE. That is where he seems to have the hardest time controlling his behavior. Some other things have been changed recently and I am seeing positive things with that.

I have spent the last 15 months learning all I could about TS. It is not an easy disorder to understand. We attend montly TS support group meetings when we can and I continue to learn. Elijah still receives services from a deaf ed. teacher three times a week who comes to Wylie to see him.

Right now we just take it day by day. Our family has had a lot of changes in the last few months. I am now divorced from Jacob and Elijah's dad. I won't get into all of that here. He still sees them and is a good dad. We are all adjusting. Jacob goes with the flow, but it isn't easy when Elijah is having a bad day. Thankfully he doesn't have many bad days anymore.

This is where we are now! I hope things continue to go well!

Added some links

Well instead of cutting and pasting all of Elijah's story, I decided to add links to his story that is already on the Auditory Neuropathy website. If you scroll down to the bottom of this web page....to the bottom right you will see two links. One is Elijah's journey and the other is Elijah Goes Bilateral! I hope you like the stories.

I have also added some links on Tourette Syndrome. Elijah was diagnosed with Tourette Syndrome in July of 2008. He started having some tics in October of 2007. We didn't even suspect tourette syndrome(TS) until February of 2008. The tics came and went, and were never really an issue. However, behavior was an issue. In June of 2008 the tics became severe and so I took video of the tics. I took him back to the neurologist who diagnosed him with tourette syndrome. He has also been diagnosed with ADHD, obsessive compulsive disotrder, and anxiety. This all happend during the summer of 2008. The school year for 2008-09 will have to wait for another blog. So many changes occurred.