Working as a Team

I met with Elijah's teacher, principal, diagnostician, coordinator of elementary schools and behavior specialist yesterday. It wasn't an official IEP meeting though. We just dicussed some questions I had about what the plan was for him this year. Turns out we were all pretty much on the same page. There are a lot of good things in place and we discussed how he will be transitioned into more mainstream classes. Some of those may even be resource classes, but that is still a good move for him out of the behavior class.

It was really a good meeting and I feel like we worked as a team. That truly is what I think every child needs in school....a good team of people working towards a goal. People willing to listen to ideas and try things, that may or may not work, then be willing to change if things are not working.

Tics are happening at school, but haven't been too bad. He isn't taking any meds while at school and I am thrilled with that. He seems happy and not so worried about school. The new teacher he has said she did observe him last year and sees such a change in him! I am sure we may still have some struggles in the future, but it seems like he is on a good path now!

Teenagers!

I get up this morning to cook a nice Sunday breakfast and I find dried up sticky kool aid on the floor. So before I can even begin to cook, I have a mess to clean up. I get that done and proceed to cook a nice Sunday breakfast. I go back to wake Jacob up and see if he wants eggs with us. As I enter, I see five empty gatorade bottles on the floor as well as a few other itmes that need to be trashed. Jacob wakes up and says he wants eggs and I tell him to get up and CLEAN up his room. UGH.

He at least wakes up in a good mood and does it. We eat our breakfast and Jacob helps me clean up a bit. It was hard to stay aggravated with him when he got up quickly and helped me. Oh and I had him empty the trash. How he can't see that the trash can is full and just empty it, I just don't know. I think it is that darn Y chromosome.

I Remember When.....

I am sitting here watching Elijah and my niece play Harry Potter on the Wii! She is spending the night with us tonight, because her baby brother will be arriving tonight. My brother, Jerry, and his wife, Peggy, went in for a test today to make sure the baby's lungs were devloped and they were. She is scheduled to have a C-Section this evening! They are having a boy and he will be named Jerome Ware Allen III.

As I sit here watching them, I began thinking of Jacob and Elijah's arrival. Jacob was born in the summer of 1996 and was the first grandchild on either side of the family. My water broke at home and off we went to Baylor in Dallas. It was a pretty easy eight hour labor, expecially when I got the epidural! He was born around two in the morning with RED hair. We did not find out the sex of the baby, so it was exciting to tell everyone it was a BOY! He was healthy and we were blessed. We enjoyed every minute of him and planned for our second child in 1999 and again were blessed with a pregnancy!

We again did not find out the sex of the baby! Things went smoothly until the 32nd week of my pregnancy when labor began and my water broke. Elijah was born at 7:40 on a Saturday morning. He was soon whisked away to a larger hospital in Dallas and spent five weeks in the NICU. His full story has a link on this page and I don't want to rewrite all that!!

I have been blessed with two wonderful children who each face their own unique challenges. Jacob is the oldest and now stands at five feet seven inches tall. He has a great many responsibilites as the oldest in helping me around the house, but he is also still a kid who needs to have fun! Elijah is unique in his own ways and I don't think I would change anything(well I think not!!) because then he would not be who he is. He is at a point in his journey in life that is very healthy and he is making so much progress! We may still have some bumps along the way, but I think we are over the biggest hurdles....at least I hope so.

I can't wait to see pictures of my new nephew and hold him! I am sure I will be remembering my own babies and when I first held them. A new life holds so many possibilites!

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.

First Day of School 2010

Well we made it today! Elijah did well on his first day in fourth grade. I walked him in to make sure he knew where to go. I had a heck of a time getting out of the parking lot though! It took me at least 20 min. to get out of the parking lot.

Today was Jacob's first day in high school. I got him up around 6:45 right as we left, but his bus wasn't due to pick him up until 8:25. He called me around 8:30 wondering where his bus was, and after a few phone calls, the bus finally arrived a little late.

It was a good day for me and I have lots to do tomorrow. I came home and picked up Elijah who was quite excited to tell me he had a great day. No note stating otherwise so I went with what he told me. I got home around 4:30 and Jacob arrived home soon after(9:00-4:15 school day) around 4:45. Jacob had a GREAT day and wanted to tell me all about it. We also had to make another trip to Wal-Mart for MORE supplies. We went and did that, boy that place was crazy and then went to grab dinner and come home! I did treat myself to a Margarita!

Jacob loved all of his classes and said he liked his teachers! He is taking ROTC and also a video class as well as the usual core classes!

Jacob fell asleep some time after we came home, but not sure what time. Before falling asleep, he got all of his materials ready for tomorrow. Elijah went to bed around 8:45 and hopefully I won't be too far behind them!

I Wonder What it is Like!

I often wonder what it is like for Elijah to wake up in the morning deaf and then put on his processors to all of the sounds in the world. Just recently, he has started putting on his processor, but not putting on the coil until he gets to the den. I guess he needs some time to wake up before the noise of the world intrudes. One morning, I put his coil on and said something to him...and he responded with "SH". I guess I was too loud.

I slowly wake up in the morning and ease into my day of noise. For Elijah it is dead silence to sound in just a millisecond. Some mornings, if he wakes before me, I'll find him watching TV or playing the Wii with no processors on. While at the beach, he is content to have his "ears" off and play in the sand or in the water. I am glad that he is comfortable with this silence. I wish he could tell me what it is like to just be DEAF one second and the next second be hearing. Is there any sound? Does his mind fill in the memory of sound for him when the processor is off?

I will most likely never know how this is for him. Maybe when he gets older he can explain it to me!

Last Weekend of Summer

Well, I have survived the first week back at work and here we are at our last weekend of the summer. I am hoping to take both boys swimming at my dad's house on Sunday. Jacob probably won't want to go swimming, so I may have to drag him with us! Elijah loves to swim though, especially now that he can wear his processor and hear!

I am hoping to rest up this weekend and get some chores done. I need to get some clothes washed for both boys and make sure we have everything we need from the grocery store. I need to make a run to Sprouts to get my chicken salad too!

I have a busy week with work next week. I'll be on the road quite a bit checking on kids and delivering FM systems for the next two weeks. I have my schedule to get in order too!

I think our kitties will miss us too. We have three cats as you know...Oreo(black with some white), Perky(white with some black) and Tiger(black tabby) and NOW we have a fourth cat....YES a fourth cat! She is temporary though, but will be with us until June 2011. A young lady posted that she was going to college in Colorado on scholarship and had to live in the dorms. She had no one to take care of her cat and needed a temporary home. I was reading it and then scrolled down to the picture of the cat and it was a Norwegian Forest cat...a Maine Coone cat basically that is black, grey, with some white and a little orange in there too. Ridgeway, our cat that died in Nov. 2008, was a Norwegian Forest cat and we had loved her so much. I don't see them often and so I contacted the young lady and we met up. The cat's name is Whisky and she has been with us for a week. She is hanging out in Elijah's room and is now quite freindly with us. We locked up the three other cats and have left the door open to Elijah's room but Whisky won't come out. She is definitely nervous about coming out. It will just take some time. The young lady paid me to buy some food and litter and will send me money each month to help with expenses! I am hoping we can all be one happy family! I'll get pictures soon!

Going to head to bed here in a bit and sleep in some! OH and I am getting a new queen size bed tomorrow! Can't wait!

On The Road Again

This week was my first week back at work. Katie, my little sister(age 19) has been watching the boys for me. Elijah has really enjoyed having her here and she has taken Jacob to ROTC for me! She is headed to Texas A&M in Galvestion next week!

I have been at inservice this week but have already been in two different cities for either a meeting or to pick up equipment! Part of going back to work is getting back on the road. I drive and see student's in their home districts! I love it and I do enjoy being "on the road" but the heat this week has been awful. Over the next two weeks I'll slowly ease back into driving. I'll be delivering equipment, checking on students and meeting with teachers. By the third week, I'll have nine students I'll being seeing each week and doing a multitude of other duties!

I spoil myself with an XM radio, an ipod in my iphone which plugs into the car and cruise control! I love my XM radio, especially the comedy channels. I don't have to worry about losing my signal with that XM radio.

Jacob spent three days at an ROTC boot camp this week. Nothing too strenuous and he enjoyed it. Both boys start school next week!!!

Debating Again

My great debate is about medication....again. I came home and Elijah had done well with my sister, Katie(age 19) who babysat for him today and will do so for the rest of the week. I had forgotten to tell Katie about Elijah's chewing and thankfully I had put him in an older shirt that he had already chewed on. He actually chewed a HOLE in his collar today! I pulled the chewelry out and showed it to Kaite, not mentioning the hole....not her fault! I'll remind her about it tomorrow and actually PUT the necklace on Elijah. I am still not sure if it is a tic or compulsion, but either way I can't have him chewing his clothes up.

After dinner we ran to Albertsons. I needed a few things to finish out this week and we ran by Blockbuster too. While in Albertsons and on the way home, I noticed a huge upswing in Elijah's tics. OH my, he was slapping at his legs, snorting, sniffing and slapping at his torso area. It continued when we got home and in the bathtub. I think I noticed them because they had lessened in the last few days. He has been off of his afternoon tic medication for about 10 days. One reason I don't him taking it, unless he really has to is due to his weight. I'll just have to keep an eye on it.

He is too cute though. He helps me look for low fat cookies and doesn't mind eating them. He drinks the sugar free Kool Aid and uses sugar free syrup. He even asked to do his sit ups. We aren't walking just due to the heat...maybe tomorrow we can try the Wii Fit!

I sure wish it were easier to make decisions about medications!

Two Day Conference I Attended

I am the coordinator of the deaf educaiton department for the school district I work in. We are a regional program and service a large rural area. Because of this, I attend a lot of meetings and conferences. The First Texas Early Hearing Detection Intervention Conference was held in Dallas, TX over the last two days. I was lucky enough to attend. I got to see many colleagues and friends I have made during my career. I also get to hear some really great speakers!

I don't want to get into the conference topics in regards to my job, because this is my personal blog. However, one speaker today spoke about FAMILY SUPPORT when a child is born deaf into a family. Well I am one of those families, and much of what she said I identified with and made me start thinking. It was like someone turning on a light and seeing things for the first time. I was aware of these things, but wasn't aware, does that make sense?

I have always known about parents going through the grieving process when they have a child with any disability, but I learned a few other things. This speaker said it changes the family dynamics and it really does. Your life begins to focus on doctor's appointments, speech therapy, AV therapy, learning sign(just depends on what you chose), decisions about amplification, using visuals to get your child's attentions and so on. If you have other children, their lives get turned upside down also. All the hopes and dreams you have for that child change also.

I really enjoyed this speaker. She was deaf herself and now has a cochlear implant. She said that her hsuband always tells people, "I didn't know I was a hearing person until I met my future wife!" and if he is with a group of deaf people he tells them, "I am hearing. I was raised oral!" She really had a great perspective on growing up deaf and how it affected her mother and family and how it affects her family even now!

I used to wonder, what my life would be like if Elijah had not been born deaf. It still crosses my mind from time to time, but not for long. He is who he is and I am who I am because of him....and of course, because of Jacob. Everyday is a new beginning and a new chance to teach him something new or for him to teach me....or for us to educate others about hearing loss.

I'm Going to be the Mom of a High Schooler!!

OK so when did this happen? When did I become old enough to have a son going into the high school? Yea, I know, I am in my 40s, but having Jacob enter high school has made me feel even OLDER than I usually feel.

He had to wear his school uniform(standardized dress) up to get his schedule so they could take his picture for his ID. He comes out and looks like ALL LEGS. He is 5 ft. 7 inches tall. His dad is only 5 ft. 8 in. tall and I think Jacob might outgrow him. Jacob is wearing a size 18 in slacks and also with his shirts. He has changed so much in the last year.

He is also going to be in ROTC and have that uniform. He will wear that once a week to school. Next week he has 3 days of stuff with ROTC at the high school. They are also working hard to raise money. This is the first year that ROTC will be only at this high school, last year they were connected to the other high school in town. This high school is going on 3 years old and only has freshman, sophomores and juniors this year. He is excited about ROTC and working the concessions at athletic events and participating in other activities.

Jacob is also going to be working by refereeing soccer games here in town. He got his uniform and other items we ordered in the mail today. He was quite excited and just a grinning from ear to ear. He should be starting that next month!

I think these next four years may pass to quickly!

The Sounds We Hear

I have worked with deaf children for going on 20 years this school year. For the first nine years of this I worked with only at school. Teaching them to listen and speak. Teaching them language skills and using both sign and speech to do this. I worked with middle and high school students, so I got them when they usually had a pretty good language base.

My work with babies started when Elijah arrived. He was born nine weeks early and at the age of five weeks he failed his first hearing test. It was confirmed four weeks later and my life changed forever. My life became about getting him language, first with sign, and later with sound when he got his cochlear implant. Elijah's hearing loss was at 110 decibels which meant he couldn't hear a train horn if it went off right beside him.

Elijah got his first CI at the age of 18 months(turn on) and a second one at the age of four and a half. My world became about sound. Teaching him what sound was and what sounds things made. Many people are surprised to learn that getting a CI or even a hearing aid for a child born deaf is not like putting on a pair of glasses. A child has to "learn to listen, in order to listen to learn." I had to teach him his name, what a doorbell and telephone sounded like and so on. First he had to even recognize that there was sound and that when you hear a sound it means something.

It has been almost nine years this October since he got his first CI and it is still a learning process. He knows the majority of the sounds around him, but occasionally he still hears something that he doesn't recognize. I remember the first time thunder scared him, oh the face he made and I had to stop myself from laughing. I was thrilled that it scared him....bad momma! I remember the time he heard the automatic water bowl for the cats(it is a like a fountain and has a resevoir) when it went blurb, blurb, blurb. He was sitting at the table and got a worried look on his face until I told him it was the cat's water bowl. He still rings the doorbell and loves to hear it. He jams to music and can recognize a song from what he hears...giving me the title if he knows it.

Today was one of those days though where he heard a sound that scared him. We were at McDonald's when someone opened the fire escape door. The alarm went off. I was on one side of the indoor playground, and it was a HUGE one, and he headed around to the exit on the other side. I hear him screaming my name, "MOM, WHERE IS MY MOM?" I see him running, coils off his head, which means he can't hear me. He didn't like the sound of the fire alarm and there are times when I wouldn't mind turning off my hearing myself. He is still a moving,crying and asking where his mom is. I am trying to get to him, but he can't hear me. Another set of parents was close to him and motioned for him to come to them....they would help him. I arrived just as he got to them and I motioned for him to put his ears on. I thanked the couple and explained he couldn't hear without his CIs(not everyone gets that they help him hear) and fortunately they did know what they were. I got his coils back on and explained to him that he cannot take them off, because he cannot hear me when he is looking for me! I felt so bad for him! I think his anxiety with his Tourette's plays in on this too.

This journey of sound is never ending and one that I am glad to be on. Everytime I think we are done, there is a new sound. Sometimes it is not a fun sound to hear, but a sound he does need to learn. I am glad I get to be on this journey with him!

Elijah's first small Tic Injury

Elijah's tics have been SO much better in the last few days. So much so, that I have skipped his afternoon tic medication. He takes it in the morning and I wanted to see if there was any difference between his tics in the morning and afternoon. Well yesterday afternoon, I noticed he had a scratch that started on his forhead and sent down to his cheek. I took a look at his fingernails and they were long enough for him to have left that scratch. One of his tics is slapping at his face and he must have scratched his face when doing this.

Of course, I clipped his fingernails right away and I'll keep a closer eye on their length from this point on. I'll also being observing his morning vs. afternoon tics more closely to see if he needs that afternoon dose. One reason I am trying NOT to give it to him is it increases his appetite and he has gained a lot of weight. I have noticed a decrease in his eating habits in the last few days. Again, it is all a trade off.

If a scratch is the worst injury he gives himself, then it isn't too bad, but I don't want it to get worse than that.

Jacob and Referee School

Jacob decided back in the spring that he wanted to become a soccer referee and earn his own money. I checked into it with our local soccer association and found out he has to attend a three day class. He will be starting it tonight in a town about 30 minutes from us. It is from 6pm-10pm tonight, all day tomorrow and Sunday afternoon. Elijah and I are going to hang in the area tonight rather than drive back(gas is still too expensive for me to waste).

He is excited about starting on this new adventure. I am hoping he feels the same way when he has to get up early tomorrow morning. We are going to stop and buy some lucheon meat on the way home so he can make a lunch to take with him tomorrow. We also have to find out where to purchase his referee gear(uniform, socks, shoes). He can work as many or as few games as he wants during the season. It is about a twelve week season.

He will also have his ROTC activities! Can't believe I am the mom of a son in high school. The adventure begins today!

Trade Offs

I just did more research on two medications that Elijah takes. I had looked at it before, but was looking again due to the weight gain. Both have increase in weight as a side effect.

It is so hard to know if the meds are even helping with the tics. The risperdal did seemm to help back in January. I started weaning him off of the seroquel back in June...he had been on 400 mg of seroquel during the day(200 in the morning and 200 in the afternoon) and now he only takes 25 mg in the morning and will stop that next week. He continues to take 400 mg at night.

He takes 1 mg of ripserdal at night, half a miligram in the morning and half around lunch. For the last two days I have not given him the half in the afternoon because his tics have not been AS bad as they had been. He does seem to be craving less food during the day.

He is cute though. He asked to play in the sprinkler so I let him. When he came in to bathe he said, "Mom we forgot to walk." I am glad he doesn't see it as a chore. I told him we would walk tomorrow. Working on the weight will take some time, but we are starting off well!

First Time in a Long Time

This evening was the first time in a long time that Elijah's deafness caused me to be scared to death. We had walked around the block and I was going to water the yard after that. When we got home, Elijah asked if he could play in the sprinkler and he didn't want his CI processors on so he was deaf while playing.

I sat outside and watched him play int he sprinkler and MUD! He was having a great time. I saw a nieghbor with two boys down and across the street playing in a sprinkler. I gestured to Elijah to come and see them and signed, "play go". He responded with a yes, grabbed his cars and took off running. I was walking behind him when I hear a car coming up behind us. Now Elijah does look both ways, but he was excited and my heart just jumps. I just knew he was going to dash into the street without looking. I took off running after Elijah hoping the driver would see me running. We do have "Deaf Child Area" signs on our street. With my heart racing and time seeming to stand still, Elijah thankfully LOOKS back and stops at the curb. He starts to look both ways....meanwhile I am STILL running and sign "wait stop" to him. He does and I get to him just as the car passes.

Now even a hearing kid, in the moment of excitement, may forget to look both ways but a parent can YELL at them to stop. Elijah is rarely without his processors so I usually have this advantage as well and I guess I just forgot that I needed to be more diligent when his "ears" are off.

Modern Conveniences!

So my fridge died yesterday and I heard back from the appliance repair company today. It will take seven to ten business days for the part to come in! OH MY!! We will be living out of a cooler for the next seven to ten days, maybe longer if you count the weekends and it truly takes ten business days.

I used one bag of ice yesterday and then bought three more. I bought one more bag today and have one and a half bags left! I have two coolers filled with stuff. One is for things that we don't use very often but still need and the other is for milk, butter, eggs....things we use almost daily. When making breakfast this morning I had to deal with everything dripping with water from sitting in the cooler. OH how I miss my refrigerator. Now at least I have my big freezer to store ice in and to put all of my freezer items, or I would have to ask family to store things for me.

I bought bacon last week, so we are going to be eating that up in the morning so it doesn't spoil. I'll have to buy more ice by Thursday morning, I am sure! A 10 lb. bag is $1.89, so I have spent about $8 on ice already! UGH! At least I am not in school having to deal with it and trying to get kids out the door every morning!

We will survive, I know, just a pain in the REAR!

My Monday and an Update on Doctor's appointments

Well I awoke to a refrigerator that was DEAD and I mean DEAD. I called an appliance company and they said they would call me and come out that morning. Jacob had an appointment at 8:45 with his pediatrician so off we went. He is now over five foot seven inches tall! His dad is five foot eight inches, so he may be passing his dad. While we were there the appliance company called and said they would be there soon, so we headed home!

It didn't take long, but the repairman found the problem! The computer in the unit had DIED, so I need a new computer. I didn't know the new fridges and stoves have computers, but they do. He said they would call me with the price for the part today or tomorrow, and it will be tomorrow because they haven't called yet. I'll call by noon tomorrow if I haven't heard from them. Most likely with parts and labor it will be around $500...UGH.

We stuck around at home and had lunch. Now for a surprise for you all. We are adding a new member to our family temporarily. Someone on the local message board needed someone to foster her cat while she starts college in Colorado. We met with her today and the cat is very nice. It is a Norwegian Forest cat, like our previous cat Ridgeway. She is going to pay me for litter and food and any vet bills. We will only have her until early June of next year. I know some people will think I am crazy, but I would hate to see this cat go into a shelter. The young lady has to live in the dorm due to a scholarship she received, but will move into an apartment next summer! The cat's name is Whisky!

After we left the cat and her owner, we headed to Children's Hospital in Dallas. Elijah has grown a little over three inches in eight months. Most boys his age on average grow two to two and a half inches in one year and here he is growing three inches in less than a year. However the doctor is worried about his weight since he is putting it on so rapidly, so we met with a dietician. She suggested cutting out all of his sugar drinks and move to sugarless kool aid and other drinks like that. Also adding more vegetables and dropping some of the starches. He doesn't really have to lose weight as much as NOT gain any more weight! I need to lose some weight myself so this will be a journey for me too.

After we left Children's we stopped by the Toyota dealership so Elijah could see his dad for a few minutes. Elijah enjoyed that. We then stopped at my dad's house to pick up another cooler to have at the house since we have no fridge! We then went to Albertson's to get three bags of ice, roasted chicken and some broccoli for dinner! Came home and made a good dinner and now Elijah is in the bath.

So trying to look at the brith side of today....at least the fridge BROKE while I was off work and not when I was working. Taking off to meet a repairman is not easy or fun. Of course, I wish it had not died. I also have a freezer in my garage and was able to put all my freezer stuff out there and I had a bag of ice to put in my cooler for my refrigerator stuff. Jacob had a great doctor's visit and continues to grow and BE A TYPICAL TEEN. Elijah is growing taller but needs to control the growing wider part.

Lots going on today and glad the day is done!

Summer is Winding Down!

Jacob and I have two more weeks of summer and then we both head back to school. I have a week of inservice and he has a week of ROTC. I think he is looking forward to it though. My little sister, who is 19, will be taking care of Elijah that week for me. She will also be getting Jacob back and forth to school for ROTC! Jacob and Elijah both start school on August 23rd. Jacob will be a freshman and Elijah will be in the fourth grade! I start my fourth year as director of the Deaf Ed. program in my district. I do enjoy my summers, but Iam a little ready to get back to work.

We do have a few things to get done before we go back to school. Jacob has his fourteen year old check up tomorrow morning. Elijah and I then go to Children's in Dallas later in the afternoon to visit with the endocronologist. The next week we have dental appointments and a visit to the pulmanologist for both boys.

Jacob will be going to referee school the 6th-9th so that he can ref soccer games this Fall. It will be a good first job for him and he is looking forward to it. He should have a busy freshman year with ROTC and the refereeing. He has already told me that he wants to do EVERYTHING there is in ROTC....we shall see. I am just glad he is motivated by something other than a computer.

Hopefully things will start well with Elijah. I am glad I have video recorded his tics to show his new teacher. It is so hard to explain to people sometimes. He has improved so much in his behavior and I hope it continues.

It has really been a nice summer this year. Last summer was the SUMMER OF DIVORCE! Lots of tears and upset. This summer we have had the beach, wearing a CI and hearing while swimming, car washes with ROTC, and just hanging at home! A lot less stress than this time last year!