A Parent's Wish

I wanted to share this website from Cochlear Americas. It is a website for parents of children with hearing loss. The parents can get more information about cochlear implants. Here is the website:

IWantToHear.com

I am a strong supporter of parents having the right to choose what communication method they want their child to use. We chose to sign and speech with our son and to have him get a cochlear implant at the age of 17 months. He received his second implant at the age of 4 1/2. I believe that signs were a bridge to him learning language and learning to speak.

I believe that LANGUAGE is the key for all children but especially for deaf children. Whatever a parent chooses for their child, they also have to follow that child's lead. Parents have to realize that it will be WORK, but it can be fun. It will be HARD, but it will be REWARDING. Elijah chose to be oral after we worked a LONG time for him to learn to speak. He dropped expressively signing, I didn't make him stop. He can still understand what I sign to him when his processors are off. We can't have an in depth conversation, but we can communicate!

Whatever choice a parent makes...sign or speech or both, it should be remembered that this is about the CHILD and not about what is RIGHT. There is no right, there is what is needed.

I could ramble on for days, I know, but I will get off of my soap box. ALL parents need to read more with their children (hearing or deaf), spend time with them, have conversations and be their first teachers!

Life is Funny

Body Worn Processor

I met a friend of mine at a Mexican restaurant to celebrate our graduation from college and earning our Master's Degrees in Special Education. Elijah went along with me because I didn't want to leave him at home alone. My friend and I talked and we all ate a great meal. Elijah was busy playing games on his iPhone and really didn't pay us much attention!

My friend and I were talking about the certification test she still needs to take and our future plans in education. One of the managers of the restaurant came over and asked us how our meal was. My friend spoke to him about another manager that works there. She said he husband went to college with the other manager and they spoke for a few minutes. This manager then said, "The reason I came over is my son is deaf and he just got his cochlear implants." I asked him how old his son was and his son is 12 months old. I told him a bit about Elijah and how he was turned on with his first implant at 18 months of age and how he got his second one at the age of 4 1/2 years. He asked me how Elijah was doing and I proceeded to ask Elijah some questions. Elijah answered them all without even looking up from his iPhone. The manager then showed my friend and me a video of his son being activated. It was exciting to see how the boy reacted to hearing for the first time. The gentleman stayed and talked to us for several more minutes and I encouraged him to make sure he took his son to auditory verbal therapy and to TALK all the time to him. His son has the Nucleus 6 processor like Elijah wears now. I told him about Elijah's first processor which was a body worn processor. He was surprised to hear they used to be so big!

Nucleus 6 Processor

I also told him that I had continued to sign with Elijah when he was first turned on, and that sign slowly faded as Elijah learned to talk!

It was a very interesting conversation. The man was very encouraged and thanked me for my time I have not had this happen in a very long time. When Elijah was younger I was approached by parents of deaf children and adults with hearing loss all the time it seemed. I am not sure if it is becoming more common to see CI processors on people or if I just don't have Elijah with me as much as I did when he was younger. It was nice to hear this man's story and see how excited he was about his son's journey with hearing. I am happy that Elijah and I could be a part of that.

Misconceptions

Earlier today, my doorbell rang and so I went to answer the door. When I opened the door, there were two women standing there both looking at me. I stood there and waited, and they didn't say anything. I then asked who they were looking for. The taller woman then gestured to the shorter one who began signing. The taller woman started interpreting for her. I then told them both that I know sign language. They were Jehova's Witnesses, who wanted to tell me about some videos online for children with sign language. We spoke, and then I asked them how they knew I had a deaf son. Now, realize, they had never asked me if I had a son who was deaf, and I doubt they just went door to door informing people of these videos. They then said that a neighbor had mentioned to another Jehova's Witness that there was a deaf boy who lived on the street. I am sure it came up when someone saw the DEAF CHILD AREA sign on our street.


Many people have the misconception that all deaf children sign. Granted, Elijah does understand some signs, but it is not his main mode of communication. The same is true for children with cochlear implants, not all of these children can communicate orally. Many children with cochlear implants still use sign language. There is no right or wrong way, there is just the way that is right for that particular child or family.

Using Sign Language to Communicate

Elijah hears very well with his cochlear implants, but there are times when I use sign language to communicate with him. Of course, when he is not wearing his processors I use signs to communicate. This is usually when he is dressing or bathing! There are other times though, that I do rely on sign to communicate with him.

Yesterday, we went to the recreation center for archery tag. This was in a huge gym, that was split down the middle and there was a lot of NOISE. All of the kids got to practice shooting with the bow and arrows and then the game started. He had to wait with the older kids while the younger kids played first. I was about 20 feet from him walking to try to get my steps in (I wear a Fitbit and am trying to lose weight) and he would whine and say he wanted to play. I was able to sign to him "wait, stop" and threaten to take away his iPad later....all in sign language. Later when he was up playing with his team, I was able to sign to him "good job, stop" and a few other things. Even with his processors, in a LOUD environment it can be hard for him to hear.

Even today I used signs with him again. We were at a loud restaurant for my brother and soon to be wife's after rehearsal party. He was at the kid's table with his cousins and I was able to sign ask him if he wanted his iPad later, and he voiced yes, and I signed for him to stop whining. My brother looked at me and said, "I wish my kids knew sign so I could speak to them quietly like that." Elijah really does understand sign language, even though he voices back and doesn't sign to me. I am glad that I have this way to communicate with him either due to background noise or distance!

Elijah's Deaf?

This is a picture of my nephew Trent and Elijah out at a restaurant this past weekend. Elijah and I went to the Texas School for the Deaf in Austin for a Weekend Retreat and then drove in to see my sister who lives near San Antonio.

We arrived on Sunday afternoon and later that night we had to decide on sleeping arrangements. The boys quickly agreed that they would both sleep in Trent's full size bed. I let Elijah stay up a little later than his usual 9:00 bed time and so he was very tired when I finally got him to bed. It was around 10:00 that night and we had done a LOT of walking and working in the days before our arrival. Elijah got into bed before Trent and quickly fell asleep. I went into the guest room to get ready for bed and when I came out Trent was in bed and Elijah was asleep.

I went in and talked to Trent who was whispering, because Elijah was asleep. I whispered an answer to a question he posed to me and then said in a regular voice, "Hey, I don't have to whisper, Elijah can't her me." Trent whispered back, "He can't hear you?" I said, "No, he can't, he is deaf without his implants on." Trent had this surprised look on his face. Now, I know I have talked to him about Elijah not being able to hear without his processors, but I guess kids have a hard time comprehending NOT hearing anything. Trent continued to whisper and said, "He's deaf." I said "YES" and then yelled right into Elijah's ear. Of course, Elijah slept right through it. Trent sat there dumbfounded and started talking in a regular voice.

My sister came into the room to see what all the yelling as about and I told her the story. Later, I heard her talking to Trent and asking him if he wanted some music to help him fall asleep. I heard him answer with, "Yea, that would be nice and it won't bother Elijah." Too cute!

We had a great visit and both boys got along very well. They both loved swimming and I signed with Elijah while he swam with no processors on. Trent learned a few signs too as did my sister!

What a Weekend!

Elijah and I left on Friday around lunch time to drive to Austin to participate in the Family Weekend Retreat at the Texas School for the Deaf(TSD). Jacob had to work over the weekend so he stayed with my partner, who also had to work! We arrived around 4:00 and got checked in. We went to our dorm room and settled in. Dinner was at 5:30, so we left a little early to walk down to the cafeteria. I have learned from past experience, it is good to get to the cafeteria early when attending something like this!

We had about ten minutes to wait and there was another family there waiting also. Elijah and their daughter played and ran around a bit. The mother and grandmother chatted with me. I then hear a scream and someone crying.  I look over and Elijah is getting up and holding his nose. He had fallen while running up the stairs. He comes running to me and when he moves his hand all I see is BLOOD. The other mom handed me tissues and when I wiped away the blood, I saw this huge gash! It was deep. I knew it needed stitches.

He and I started our walk back to the check in area, because our car was there and I needed to find out where the closest hospital was. I was a nervous wreck. This would be my second trip to an ER in two weeks and this was in another town! The nurse looked at Elijah's nose and agreed it needed stitches. Someone offered to drive us, because by this time I was in tears and my hands were shaking. Elijah was crying and all I wanted to do was take care of him.

We arrived at the ER and they got us back pretty quick. The woman who took us waited in the waiting area. She was the first of many angels that night. They took X-Rays and he had also broken his nose. He got five stitches. Elijah was not very happy about stitches and threw a fit. I told him they would have to give him medicine to calm him and he would get sleepy. There would be no ice cream social at TSD if he was sleepy. He calmed down and after two huge shots he got his five stitches. We then got his prescription for antibiotics and left. It was now around 7:45. We found a CVS and arrived right around 8:00. The pharmacist then tells me they closed at 8:00. I explained the situation and she filled the prescription. Our second angel of the night.

We arrived back at TSD and they had saved us dinner. TSD is a huge campus. It reminds me of a small junior college and there are lots of stairs! Another staff member then drove us over to the ice cream social in a golf cart, because the walk was SO long. This was Elijah's favorite part!!! We ate our dinner, had our ice cream and Elijah got to play with other kids. He was a real trooper!

The rest of the weekend was awesome. I went to workshops on Saturday and Elijah went to a day care where he got to play with other kids. He swam, but did not submerge his head due to the stitches. He had an awesome time and he behaved! I arrived back and we hung at the dorm until our group got to eat dinner. We then went and watched them shoot off rockets at the football field and then hung out with some other families. Let's just say we crashed hard that night and were in bed by 9:30.

Sunday morning was our last to be there. Elijah went to day care after breakfast and I went to two more presentations. We left around 11:15 and met my sister and nephew for lunch. We are now at their house!

Once we get home, I will post some pictures that I took. I really enjoy connecting with other families at this retreat. This is also a time when Elijah gets to be around other deaf kids his age. There was a good mix of families there with kids who signed, talked or did both! If you live in Texas, I encourage you to take your family if you have a deaf child. It is only $75 for the weekend. You stay in the dorms and they feed you while you are there! You can't beat this deal. Just be careful on those stairs, or you will spend some time in the ER. OH and I am ever so glad to have that accident insurance, WHO knew I would need it again so soon!

Choosing Oralism For My Son

When Elijah was born 12 years ago, I had been teaching deaf children for  nine years. I knew what a cochlear implant was and I was a proficient SEE signer. Elijah was diagnosed at the age of five weeks as having a hearing loss and at nine weeks with auditory neuropathy. Once I started doing the research about cochlear implants and auditory neuropathy(AN) I realized that I wanted Elijah to have every chance to speak. I started signing with him right away. He was a premature baby who was developmentally behind in all aspects. He did start using some of his first signs around the age of twelve months. He was implanted at 17 months with one CI and turned on at 18 months. We haven't looked back since. I continue to sign with Elijah when his "ears" are off.

You may wonder why I chose to write about this today. I think sign language is a beautiful language, but not everyone in the world speaks it. You may be limited in how you communicate and it may also limit your reading skills. Notice I say, IT MAY LIMIT a person, I didn't say IT HAD TOO! I have many deaf adult friends who are doing well and communicate just fine! However, I have many former students who struggle at times and even some of those deaf adult friends do too. I chose the CI so that Elijah would have choices when he grew up. I want him to know sign, but I want him to have that choice and not be solely dependent on it. There are HEARING people out in the world who think lipreading is just as good as signing. They think an interpreter isn't needed and that the deaf person can understand just fine. There are deaf adults who have to advocate for themselves daily and I am sure Elijah will have to learn to do that too to some extent, but I wanted him to be able to communicate daily with his peers and others in his life.

Today I ran up against this struggle, trying to help a friend get an interpreter set up. I can't get into the details, but I was flabbergasted at how so many people don't understand the Americans with Disabilities Act and how it applies to access to communication for people who are deaf/hard of hearing. I will have to teach Elijah how to advocate for himself, I am sure, but at least he will have the language to do it.

Puke, Meds and other stuff!

My mom came into town yesterday to see all of us. She came by the house for a while and I helped her file her taxes online! She then took the boys and I out to dinner with my brother and his family. We had a very nice dinner. Elijah didn't want to eat much of his dinner though, but did want dessert. My mom went ahead and got something for him, which I shared with him.

All seemed fine when we left, but when we got in the car I hear, "I just puked" from Elijah in the backseat. As I looked back and noticed the puke on his shirt, he puked again. I yelled for him to get out of the car and he did and puked once again. Oh my! I took his shirt off and cleaned him and the car up as best I could. I then drove us home. I now had the debate of whether or not to give him his meds. He came home and sat on the toilet for a bit and thankfully had a BM. I am assuming at this point that he was just stopped up. I gave him a bit of water and waited. He held that down so around 7:30 I gave him his medication.

I put him to bed around 9:00 and he seemed OK. Well then he yelled for me around 10:00 and said he had to go to the bathroom. Halfway there he said he had to puke so I pushed him along faster. Now, remember, he just got out of bed so NO ears....meaning NO hearing. He makes it to the toilet and OH my did he puke. He said he was done and came over towards the sink for me to wash his face and OH MY he projectile pukes ALL over the sink. I moved him back to the toilet where he continues to puke while I clean up the sink area. OH MY was it a lot and was it ever gross. He finally seems all done and says he feels better. I gesture out to him that the Easter bunny is coming and to NOT eat any candy in the morning. He seems to understand and I put him back to bed. I signed to him to wake me up if he felt bad in the night.

I woke up this morning to find him asleep on the den floor. Thankfully, there were no candy wrappers on the floor around him. He and Jacob looked for eggs in the den and then Elijah tried to eat some chocolate. I got to him in time! He ate two pieces of toast for lunch. NOW the dilemma again....do I give him his meds? He has had so little to eat and I hate for those meds to just SIT in his stomach and make things worse. I waited an hour and he kept down the toast. I decided to give him his zoloft and singulair, but to hold off on his other meds. He went with me to run some errands around 10:00 and fell asleep for a while. It is now 12:10 and he hasn't puked again! He had a little bit of sprite to drink, two small sips and so far so good.

I am hoping this was just an issue of him being stopped up and not a virus! I have a roast cooking for dinner later and am planning on just having a laid back day today. I really don't want to have to clean up more puke!

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.

Videophone!

Elijah just got a videophone for the house. He is not really that sign dependent, but a mom in New York who is deaf and has a deaf son with tourette's recently contacted me through email. She wanted for her son and Elijah to be able to communicate about their tourettes. Elijah understands a lot more sign than he uses, and I would like for him to learn a bit more sign! This also allows the other mom and I to be able to chat about our boys. They both seem very alike!!!

I have also been able to talk to a few of my former students using the videophone. It is really neat and Elijah loves to be able to use it. If you are deaf or hard of hearing and use sign language to communicate you can qualify for a free sorenson videophone. Just go to their website at http://www.sorenson.com/

If you have a videophone and would like to chat, send then leave a comment and we can exchange phone numbers!!!

Tics and also some Language!

I have been trying to catch Elijah doing his tics for a few days. The first video of him in the bing bag chair is him doing his most common tics. Nothing too serious, but you can see him kick at the fireplace some or rather kick out some. He is also snorting/sniffing quite a bit.

I started the second video while he was in the bathtub playing. I could hear him ticcing and stomping his foot so loudly. It is not the best video I have ever taken, because I was trying not to let him see me. Well then I did put the camera on him and boy he starts just a talking. I do "interpret" what he is saying because the acoustics in the bathroom are not the greatest and I wanted y'all to hear the vocabulary he was using. You can also see a lot of tics. At one point he slaps himself in the face. That one is not too common, thankfully. I communicate with him using sign and gestures. I also wanted y'all to see how I get his attention by flicking the lights on and off.

It's Just Not Fair

OK, I just need to vent for a minute and let off some steam. I am not aggravated at Elijah, more at the situation.

For whatever reason tonight, he brings up our cat Ridgeway, who died in November 2008. This is over a year ago. He has been going to sleep with no problems since I can't even remember, but not tonight. Tonight I can hear him crying in his room. He mentions Ridgeway and how he misses him. Now you must realize, at this point he cannot hear me. I sign to him that I miss the cat too and it is time to go to sleep. He says YES and I leave after a few hugs and kisses. About ten minutes later I hear him sobbing in his room and so I go back in. He says I LOVE YOU MOM....I miss Ridgeway. I took him a melatonin pill and I put his processor back on. I am stern and tell him he must go to sleep or no computer for tomorrow. I tell him that Ridgeway did die and is in heaven, but NOW it is time to go to sleep. I hate to be so stern, but he doesn't GET IT when I am nice about going to sleep.

It just isn't fair that on top of having Tourettes with OCD, ADHD and anxeity that he has to be DEAF. With his implants he can hear, but there are SOME situations that he cannot....bathtime, swimming, and bedtime are the main times that I can think of. He does know some sign so I can sign to him, and he does talk back to me, but NOT enough sign for us to have a REALLY good conversation. It just isn't fair that he is deaf AND Tourettes, OCD, ADHD and anxiety. I consider that second grouping ONE neurological condition.

I am thankful that he does have such a good language set. His language skills are good, don't get me wrong, but there are times when it is NOT good enough.

OK, my vent is done and I feel better!

Cool things about Elijah being Deaf!

I know there are some that may think this is not the best thing to write about, but there are some cool things about Elijah being deaf. Here are a few of them:

1. Eljah can turn off his hearing any time he likes. Not always a good thing for me, because sometimes he will do it when he is mad at me. He doesn't do it too often though.

2. No one ever knows if he is ignoring them or really not hearing them. Comes in handy with his brother and me.

3. He doesn't have to worry about annoying noises at night when he is trying to sleep.

4. Knowing sign language is cool, if you choose to use it! We all know enough sign that we can chat if needed using it.

5. He can choose cool cochlear implant processor colors and/or decorations! Elijah has camouflage eargear and green earmolds.

6. When he came home from the hospital as a baby, Jacob didn't have to worry being loud while Elijah slept. Elijah could have slept through a train horn!

7. Elijah had the most expressive facial expressions as a baby. We used those to communicate until he started picking up signs.

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".