Tourette Syndrome Awareness Month

Yesterday was the start of Tourette Syndrome Awareness Month! As many of you know, Elijah has Tourette Syndrome. It is a very confusing thing to try to explain to people. Elijah doesn't have many tics, but when he does they can be very intense. He also has OCD and ADHD which are two co-morbid disorders associated with Tourette Syndrome. I would say these two things give him more trouble than the tics do.

I am trying to educate more and more people about Tourette Syndrome. Awareness is the key!

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?

Update on Loss/Damage Coverage

I have been on the phone several times with Cochlear and with my home owners insurance. They can cover it under home owners, but it would have to be lost or damage AT HOME. They can also cover it under a personal articles policy that would have no deductible if lost or damaged. Well, Cochlear has had to send me three different emails, because they kept making mistakes on a quote for the home owner's people. Finally, after we get it all figured out, I am quoted a price of $1330 for a YEAR to cover both processors....$110 a month. WELL, that is a heck of a lot more than the $550 I paid ESCO for one years worth of coverage.

To top things off, I get the letter in the mail today stating that ESCO cannot cover Elijah's processors again. When I checked Cochlear's website, the warranty PLUS the loss/damage for two processors is $1570. I just don't need the warranty right now, I just need the loss damage. Needless to say, I am not happy. I may have to talk to the home owner's insurance people and see if that is the ONLY coverage they can offer. I am sure I could call some other insurance companies, but they may not deal with me since my home owners is not with them. You never know though. We may just have to roll the dice and go without coverage for a year. He has never lost one before and been implanted for almost 11 years. I just hate the thought of it.

The Jigsaw Puzzle

The boys and I went out shopping the other day and on a whim we decided to buy a jigsaw puzzle. I let Jacob choose the puzzle and he went for this one, which is 2000 pieces. I thought, no problem we can do this and I still think we can, but it may take all summer!  I remember doing puzzles with my mom when I was a kid, and how much I enjoyed it. I thought it might also teach Elijah some patience, but so far he is just wearing on my patience! We will keep trying though. I have found that working on the puzzle gives Jacob and I a chance to talk. It also gets him off of the laptop for an hour or so a day, which is a good thing. He will be 16 next month and he is just growing up too fast. I have to make this time with him! We had an interesting conversation last night while working on the puzzle. We were listening to the news and the story was about the two dads in the Target circular in the newpaper. People were upset that there were two dads that were together as a couple. I didn't say much and then Jacob said, "What's the big deal? People just need to learn to be tolerant." He also shared that some other kids at school call him a "Ginger", because of his red hair. I had seen a story about this on "What would you do?" that comes on most Friday night. I asked him what he does when he is called that, and he said he ignores them. He said that they are just ignorant and don't know better. It was a good conversation and I was glad we had it.

Now back to the puzzle! Another tips when purchasing a puzzle, be sure you have a big enough table. As you can see we haven't gotten very far on the puzzle! You might also be able to see the board we had to buy at Home Depot, so we can move it off the table when we need to eat! We are still missing some edges, but hopefully we will find them soon. I hope to have more conversations with both boys as we sit around the table this summer working on this puzzle! I'll post more pictures as we make more progress. 

Never a Dull Moment!

Well, parenting a child like Elijah means there is never a dull moment. I never know how things will go with him. Right now he is having a rough time in school. I am still trying to figure out what the issue is. I am hoping when his schedule changes on Monday, things will be better. We discussed some things today and I think he is holding back some tics.

Getting back to the never a dull moment....he was up at 6:30 this morning. I didn't get up until around 8:00. I heard him up, but he usually does pretty good on his own for a bit. I had left out his cereal for him to make his breakfast. Due to his behavior he has lost all privledges to electronics and I kept the TV remote in my room for the den so he was limited on what he could watch. Well I walk into the den this morning to a cat toy TAPED to the ceiling fan and tape on several other fan blades. I also noticed some white spots on the fan where he had pulled tape off of the blade and pulled off some of the brown varnish. I removed the tape and had the same outcome. Needless to say, I was not pleased. Instead of staying home with brother today, he got to go and run errands with me.

He has really been "off" this week. I am not sure if it is due to the time change, hormones, or just something that will happen sometimes. Thankfully it doesn't happen often, but when it does, it is maddening for me.....and I am sure it is for him too.
I know I sound like I am complaining, but the tourettes, OCD and ADHD are just hard to figure out. I never know what will happen next, or what will work for him. He is on some major restrictions this weekend and I am working on a reward system. We shall see how it goes.

Watching Elijah!

We joined the city's Recreation Center yesterday! It has some really nice work out equipment and a basketball court for the kids to play. I can work out on the second floor and see Elijah down playing on the basketball court. When we went to check it out he cried when we left, he wanted to stay. We had joined, but I wasn't really in work out clothes, so I promised we would go back and we did.

Jacob went with us yesterday and I walked a mile on the treadmill. Jacob kept an eye on his brother, but I told him he didn't really have to "watch" him. Jacob is a good big brother, but like any brother he is annoyed by his little brother. They did pretty good though and Elijah interacted well with many of the other kids.

Elijah and I went back today. He got a basketball and headed for the court and I headed upstairs. I walked on the treadmill so I could watch Elijah. At one point I saw a boy about Elijah's age in Elijah's face pointing a finger. Elijah did well and didn't get back into the other boys face. I don't know if Elijah did something to the boy or touched the boy's ball, but he has to learn to deal with these things. Elijah walked away and joined some other boys who were playing and started talking to them. It was so hard for me not to run down and see what was going on. Of course, I also saw Elijah kick another boy's boy across the gym rather than giving it back to him. Elijah had not taken the boy, but he could have been courteous and helped the boy out.

Once I was done with my workout I went down and shot some baskets with Eiljah. We talked while we played and discussed the things I had seen. He did really well and listened. We then played some fuss ball with a game table. It was a lot of fun. I am glad that Elijah likes the Rec center and that his behavior so far has been good.

When I watch Elijah, I so wonder what is going through his head. Here he is with his CIs that make him look different. Most kids don't make a big deal about it, but some do. He then his tics and other neurological issues. I was proud of him both today and yesterday. It is good to see that he can be independent around other kids and control himself.

Reasonable

I was told recently, by someone that I really respect, that I was a reasonable parent, when it comes to issues with Elijah at school. By issues, I mean IEP meetings(ARDs in Texas) and getting services he needs for school. I took this as a compliment. I advocate for my child, but I have reasonable expectations for him and for the school district, but I also don't let the school off the hook for services.

I am fortunate in that I know a lot more about IEP meetings and how to word things to get what Elijah needs in school. I have 20 years experience in special ed. and most parents of special needs students don't have that. In Elijah's IEP meetings, I truly do feel like we are working as a team to ensure he is successful. That doesn't mean I always agree with how things are going, but we discuss it and can usually come up with some kind of compromise we are both happy with.

I often wonder, what do other parents do? How do they educate themselves? Are they completely overwhelmed? I know at times I am overwhelmed! The internet has helped so many parents make contact with other parents who can give them ideas, but when you are sitting in that IEP meeting you almost forget WHAT you need to say.

I am fortunate to be in a good school district, that I have people who help me, and contact with other parents who have been a great help to me.(Shout out to Michelle) I also have a good Tourette's support group here in Texas that has helped me a great deal!

I have also helped parents by talking to them about how to get the services they need for hearing impaired children and maybe later I will know more to help more parents of kids with Tourettes.

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.