Workshop on Tourettes

I went to a workshop today at the educational service center for our area on Tourette Syndrome. Susan Conners was the presenter and she did an awesome job. I have already emailed her with a question. She was easy to talk to and KNOWS so much about tourettes. She has it herself. She is also a very giving person offering her email and to phone in for IEP meetings if needed.

I feel like I haven't really always been dealing with Elijah's tourettes. I have got to get myself more educated and become even a stronger advocate than I have been. It is an overwhelming thing to deal with. There are no easy answers and I think what I really liked about today was that Susan really understood and was able to answer all the questions asked of her. Nothing seemed to stump her.

Everytime I think I have tourettes figured out, it throws me a curve. The OCD and ADHD don't help at all either.

Taking Elijah to the doctor on Monday. When his tics really get going, he is having about 70 tics every 10 min. They are really hard tics.

I am going to enjoy the rest of my weekend! Staying home out of the cold! I have a few errands to run, but they won't take long and I'll get home to my warm house!

ARGHHH TOURETTES!

Don't worry, I am over it now, but sometimes I just get so sick of tourettes. It is not the tics, it is the OCD, ADHD and anxiety that come with it. Elijah has been doing SO WELL, I mean great. Then tics got bad in the last few weeks and it seems behavior has steadily gone down hill. He has had his points frozen at school ALL WEEK....not one day that has been good all day. On Monday he was OFF TASK for 90 min. He would not sit and do his 10 min time out. WTH! We have not seen behavior like this since last year!

He is also pushing things at home. He is telling me NO more and not going to time out when told to go there. It is so hard to keep a calm demeanor with him when he acts that way.

Today was the last straw. I told him NO electronics(Wii, computer, nintendo DS....) until he has a good day. It doesn't have to be perfect, but NO hitting and do what you are told.

I can deal with tics. Tics don't bother me. I can deal with a little defiance, but not all out DEFIANCE. I know it could be worse, but it could be better too.

My vent is now over. I feel better. Thanks!

Raising Children part 2

As I laid in bed last night, I was thinking about what I had posted in my blog. There was something missing, something I had not written down at the time because I couldn't really put my finger on it. As I ws laying in bed, going over all of it, it came to me. JOY! That is what I had missed. Having a user's manual would take away all oft he JOY that comes with having a child.

What do I mean by Joy? I mean the joy of seeing your child crawl for the first time or even just smile. The joy of the first word and the first step. The joy of the first day of school to the first date! If I had a user's manual then I would know the exact day they would accomplish these milestones and it would not be such a joy to experience them. Of course, by taking the joy I take the sadness. The days when they are sick or break a limb and you have to take them to the ER. The sadness of losing a pet or a friend moving. If we want the joy then we have to accept the trade off of sadness. I do think it is worth it, this trade off.

I used to wonder why my mother worried so much about me. Why she wanted me to check in when I was at a friend's house or when I travelled to college to check in. Now I know, parents never stop worrying. Even when that child is 18 and going off to college, the worry never stops, but neither does the joy. The joy continues also. The joy of graduating from high school and then college. The joy of a first job and of becoming a grandparent. With joy comes worry and we have to accept both.

I think I can do that, but it doesn't mean it is eay.

Raising children

I do wish that children came with a user's manual, unique to that child. This manual would inform parents as to what discipline works with that child and their preferred ways to learn. It may also let parent's know what is unique about that child from something as good as a high IQ to a disease that is lurking and what to expect. Of course, I guess this would take some of the fun of parenthood away, but it sure would lessen the stress.

I love my two boys and wouldn't change a thing about them, because then they wouldn't be who they are. We can't take away all the hurt and learning experiences that come with that hurt or from joy. Some of us carry a heavier load than others.

My son Jacob is a handsome young man who is now taller than me. He was blessed with good looks and a good personality. He does have ADHD and I do think OCD shows itself at times, but otherwise he does well. I have made my mistakes with him, but nothing too serious and nothing that most parents don't experience.

Now Elijah has had a rough start from the beginning. I do so wish he had come with a user's manual. He was eight weeks early and spent five weeks in the NICU before coming home on oxygen. He also failed his newborn hearing screening when dismissed from the NICU. He was later found to have auditory neuropathy and be profoundly deaf. He spent six months on oxygen and we had to watch him carefully for illness. He spent the first several years just trying to stay healthy. He underwent two different cochlear implant surgeries within the first four and half years of his life. He has had two different CAT scans in his life and was diagnosed with Tourette Syndrome at the age of 8. He was also found to be OCD and ADHD. Boy at the age of three this would have been nice to know, because he was such a stubborn kid.

I sometimes wonder why Elijah has to carry such a heavy load. I would gladly carry it for him and take on some of his challenges. I have done the best I can and have made mistakes with him also, but I think he has made me a better mom. I am more patient with him and also with Jacob. I have learned that yelling doesn't always accomplish a thing except more yelling. I have learned that spanking is not always the answers and time outs do work, when done correctly. I have learned that consistency is the key with all of this. I have learned to be an advocate for myself and for both my children. I have also become a better teacher and a better advocate for the parent's I deal with as well as their children. I think I have become a better listener, but I still have to make myself shut up sometimes and really listen.

Would a user's manual have helped or would it have made me worry even more as I read through it with this newborn in my hands? Would I have even been able to bond with him or would I have just worried and worried?

I guess children are here to teach us even as much as we are supposed to teach them.

A Little Brag

Now that Elijah is on Level 4 in the behavior program he is having a little homework at night. Mostly studying spelling words and also reading a book. This past week he hada book about a little boy who only had one arm. His other arm was missing at birth and he had a stump for an upper arm. No elbow or anything past that. I apologize if I am not politically correct.

In the book it discusses how he got a prosthetic arm and hand. It also showed how he made friends and that people asked about his prosthetic arm. I compared it to Elijah's cochlear implants and how they are prosthetic ears! It took 3 nights to read the entire book and he did a great job. His fluency is amazing. He never quite pronounced prosthetic correclty, but he did try several times when I corrected him.

Well, we always watch the news at night and of course Haiti is covered nightly. Elijah watches while he plays and sometimes he makes comments or I make comments. He was very interested when they showed a little boy what had to have his arm amputated due to a crush injury. The news showed him with a bandaged stump. Elijah looked right at me and said, "mom he needs a prottettic." Now he didn't say prosthetic correclty but HE USED THE WORD and used it correctly. He didn't say fake arm or a new arm. He used the word prosthetic!

Elijah amazes me daily with the words he uses and clauses....mom WHEN we are done shopping, can I play the Wii?

Now we still have some behaivior to work on, but I take pride in whatever I can!

PE

Overall, Elijah's behavior has improved 200% except for in PE. It isn't like he is being awful, he just does things before thinking. Like today, they had jump ropes and he swung the rope around and hit a girl. He didn't do it on purpose, but it is still considered a hit and so his points are frozen. Quick recap...he is on a behavior plan and has to earn points to move up in levels. He started on level 1 and if he hits he moved down a level(like on level 2 and he hits so he moves back to level 1). He was doing great, but still stuck at level 1, so we tweaked things and he is on level 4 now.

He has fewer privledges on level 1 and as he moves through the levels he gets more privledges. On Level 4 he gets to eat in the cafeteria and he has his desk OUT of a cubicle. Now he needs this structure, but it is just frustrating that PE is holding him down. That is his last hurdle. I am really just venting. He is 9 years old and in 3rd grade. He has to learn to be careful, but when you compare him to this time last year you wouldn't even see the same child. You would think they were two different children.

OK my vent is over. He will make it, he has made too much progress for me to get down now. He just has to try harder!

Language

I am amazed daily at Elijah and how much language he has acquired. As many of you know I work with hearing impaired students in my school district. Many of them are sign dependent kids. Now, don't get me wrong, I am a strong supporter of sign, but I am also a strong supporter of parental support at home in learning signs. The students I have who have parents who sign do so much better than those that just learn enough to get by.

I don't think many people really realize how children learn language. It all starts at the moment of birth. Babies listen to all the sounds around them for almost 12 months before they really begin trying to put words together. It may even take 18 months. Babies babble, of course, and parents respond and that is how it all starts. For a deaf baby, they don't get that. Sometimes parents don't even know their child is deaf until the child is 12, 18 or 24 months old and then they are playing catch up. I work with so many children who do sign, but still don't really have the language appropriate age. I also work with children with cochlear implants who have not progressed as well as other kids. Sometimes it is that appropriate therapy was not done, or the child just has their own rate of progress, or there is a secondary condition. I also work with deaf ed. teachers who are very inflexible and think their way is the only way. HOW HOW HOW are we to make any progress with these kids if we can't see eye to eye or at least work together.

Anyway, I am off of my soapbox! I went to a workshop at Calliers Center for Communication Disorders in Dallas. It was titled Learning through the years and started with babies through college years on development and not just language development....social and emotional issues for deaf children. Now I have always known vocabulary was important but I couldn't put it in words to explain it well enough to parents. However I learned something in those two days about vocabulary.

There are three tiers of vocabulary. Tier 1 is basic vocabulary that every six year old should know...chair, table, bed, bath etc. Tier 3 vocabulary is academic vocabulary. These are words we don't use every day like isotope, quadrilateral, inclined plane, etc. Tier 2 words are words the "meat" of our vocabulary and where we should focus when teaching children. These are words that can be USED to teach Tier 3 vocabulary. This really got me thinking about how to teach kids. ALSO, that parents need to understand that it doesn't matter HOW WELL a child can sound out words if he doesn't have the vocabulary to understand WHAT is being read.

We have got to UP the ante when working with these kids. We can't just take what they give us, but must demand that they give us more. I'll give you an example of how Elijah used Tier 3 vocabulary. it is that inclined plane story I told a while back. Elijah asked me what something was. I answered it was a RAMP(Tier 2 vocab) and he said NO mom it is an inclined plane. HE had the Tier 3 vocabulary word and used it while I had chosen a Tier 2 word. However, Elijah had known the Tier 2 word...ramp...and at school when taught inclined plane with a definition of ramp he had known it and learned it. SO many of these kids don't have the tier 2 vocabulary to understand the tier 3 academic vocabulary they are being taught.

The other thing we have to do is expect more from them in regards to speaking and using sentences. Don't accept pointing when they want something or accept ONE word. Great they used the word, but "feed" them the sentence and help them practice and expect it every time. I did this with Elijah and didn't even KNOW I was doing it. Now when he asks things like "what is the number today?" I say "What is the date?". He repeats it and we move on. I don't have to spend a LONG time teaching him to repeat what I say and he learns it. It may take several weeks, but he always does. I do this with my students, but they need their parents to do it too!

I am glad to say that even after 19 years of teaching hearing impaired students and almost 10 years of being a parent of a hearing impaired child that I have learned something NEW. I am hoping that when I talk to parents I can turn them on to these ideas. We have to set high expectations and we have to HELP these kids meet these expectations. Elijah uses words like inclined plane, natural resources, chewbacca, darth vader, studs(from the game), character, remote, obstacle course and so on. He still needs me to "teach" him but I don't have to set up a lesson, I just have to be on the look out for those vocabulary words he needs. The newest one has been VILLAN. I heard it the other day and though, wow, we always use the words "bad guys" to explain the bad guys. Lets up the ante and use the words villan. It came up during a Star Wars Wii game and I just started talking about Darth Vader being a villan...a bad guy...like the joker is a villan on Batman and so on. I then used the word over several days. He has not used it, but he has heard it and if he reads it hopefully he will relate it to those Tier 2 words...."bad guys".