The End of 2011

I'm really behind on catching up on Christian. November and December are the busiest time of the year for him. As all of his annual follow-ups and evaluations come up and I decided to wait till he has been to them all to talk about it in one blog post. He still has one left, the geneticists, that he will see the third week in January of 2012. But I think today is a good day to catch you up on things for this year. 


First thing-
His school and I had his annual review and IEP meeting the first Friday of November. His Teacher, Speech Therapist and Occupational Therapist were very pleased with Christian's progress at school since he started one year ago. His preschool teacher commented that he is still acedemically behind children his age but has adapted well to school and is following routines. Less tantrums and outbursts. Speech Therapist says he is making more of an effort and being more consistant with his communicating (verbal and signing.) Occupational Therapist says he is tolerating a greater variety of sensory input. His attention span has improved for activities that his Therapist suggests; rather then doing just what he wants to do. 

*Overall, Christian is doing so well at preschool. He loves it and he loves everyone there! Ben and I are so blessed to have our little man attend such a great school system!

We took him back to his Neurologist the second week of November for his annual follow-up (mostly for developmental delay). She didn't focus on the fact that Christian is behind other children his age because she was so happy with the fact that he is making the progress that he should be. She wasn't surprised that his expressive language skills still isn't where it should (because of his hearing loss) but was happy that his receptive language had shown much more improvement since his appointment in 2010. This time last year he couldn't follow most of the directions you gave him. Today he can follow most directions you give him, not that he always will (typical male). Although he is still having some trouble answering yes/no questions. He almost always says "no," even when he means "yes." Doctor was satisfied with the services he is getting at school along with attending preschool on a regular basis. She doesn't want him to go back for another Neurology follow-up till November 2012 (unless needed for any concerns).


Christian celebrated his 4th birthday the first of December! I can't believe my baby boy is 4!!!!! I still see him as that sweet baby boy that was in the hospital, and I always will!

Communication skills continue to improve:

His new signs are - movie, bird, ice cream, hot, cold
New verbal words are- watch, weed (read), see it, the end, help, k, wow, hot
When you start counting and you say "one" he will then say "two" and attempt "three" but its not as plain as his two.
He is attempting to repeat words, signs or sounds the majority of the time. Not every attempt he makes sounds right but it is getting much better. He still continues to need less prompting with one-two words or signs,  ecspecially if he wants something bad enough.
My favorite is him yelling "help" when he wants the cabinet open! Or him yelling "help" then signing movie to change his DVD.


His four-year check up went as usual, Christian crying and throwing up most of the time. But I am use to it by now. Pediatrician still diagnosed him with developmental delay but was absolutely thrilled with ALL of his progress he continues to make. She was even more thrilled that he loved school so much and that he was doing so well there. She felt that was the BEST thing for him! 


His routine hearing test was December the 16th. This appointment was not completely smooth but....it was the smoothest it has been since he was diagnosed with hearing loss at 5 months old. He completed the hearing evaluation in my lap and responded to every sound (high and low pitch). But he turned to the left side every time even when the sound came from the right. The audiologist said the left ear was still doing all the work (based on his responses that day and the ABR done two years ago that showed profound HL in the right) and his left ear is still in the normal range at four years old! YAY!!! We were able to get the measurements of both ear drums, even though he kicked and screamed. That was as much that we were able to do that day. Go back in July and as always I hope he does better so they can do more testing and can get more results.


Even though he is still 'developmentally delayed' I got a feeling before long you will never be able to tell what he went through or that he was ever "behind."  He is gradually acting more like a "typical" child everyday. He is finally engaging in some imaginative play. By getting in the floor and pushing his little cars around and jabbering and giggling as he plays. He is even playing with his sister now, in short 2-5 minute intervals a couple times during the day. Playing with his cars with her, demonstrating turn taking and playing hid and seek around the house. He is wanting to become more independent, as most kids do at this age. His class at school had a little program for Christmas where they sang a few songs for their parents. Even though Christian didn't sing any of the words to the songs. He did do EVERY move to the dances that went along to the song, just like all of his classmates. He yelled out "hey" during the appropriate times.  He even put his Santa hat on his self and wore it, which is huge for him!


I can tell a difference in him everyday. I fell that he is truly starting to 'grow up' on me. As much as it hurts, it is also a great feeling as well. It is what we have been working so hard for all these years. I believe we will see even bigger improvements in 2012...I just know it!!!

Technology

Have I mentioned lately how much I love technology?! Well if I haven't, I do! It is amazing how many different ways you can keep your child engaged in learning these days from a computer to a cell phone. YES, a cell phone. Got to love the 21st Century!

A lot of people have asked me over the years, "How did you learn sign language?" In the very beginning, I learned some basic words from Christian's first speech therapist and then followed by a handful of other words from his Teacher of the Deaf.  Then they told me the net was a great place to learn! So after they referred me to some great websites aslpro.com and http://mybabycansign.com/  my learning began so I could teach him. Then as he got older and less interested in what I was doing, probably bored of the same repetitive actions while looking at a book or doing a skill. I went to YouTube (of all places) typed in everything from sign language, sign language music, baby/children sign language and so on and so forth. Letting him watch whatever was appropriate and interesting for him, whether he actually learned something from it or got entertainment out of it. It even taught me how to completely sign "Twinkle, Twinkle, Little Star," and then I was able to teach him! Eventually I found clips of the series, "Signing Time," which he loves and will be getting on DVD for his birthday or Christmas hopefully. I am still deciding since I want him to speak instead sign now. The television needs its credit too. He has a few "My First Sign's, on DVD that he used to watch ALL the time. He loved the cat puppet and Marlee Matlin.

As of the last 3 weeks I have been downloading apps to my cell phone. At first I thought, all this is going to amount to is my 3 year old tearing up my phone. But because I am more concerned with my son's development and future then I am a phone that I will get tired of eventually. I tried it anyway and so far it has been going great (knock on wood)!  First app I installed was flashcards of the alphabet that made the letter sounds. Now, I have been doing this with him for a couple of years for our "work time," but I thought using my phone (because what kid doesn't like playing with a real phone) would be a fresh new way to get him more interesting in "working." It was a good idea. He attempts to say EVERY letter of the alphabet. Letters- A, B, C, D, E, G, I, M, P, S, T come out great while the rest still need practice. Another app is flashcards with animals on them and making the animal sounds to go along with it. Once again, we have done this exercise since he started speech therapy. But it is much more fun to him listening to a real animal sound then your mom or therapist trying imitate an animal and sometimes the imitations are horrible (but we try). I will be looking into getting shapes and color apps for the next few weeks to see which one's work best and one's that don't. I had another app that had about twenty-five story books downloaded on it (because he loves books and loves to read!!!!). But in the time it took to upload one, we could have read about three or four of his real books. So, I took that one off, would of been great otherwise. Last but not least after days of my daughter and I fighting over who was going to play Angry Birds (a game app on my cell). Yesterday, Christian decided to see for his self what we were doing. He very quickly became hooked just like his sister and I. Setting in my lap for almost an hour watching me play the game. Laughing so hard at all the birds crashing up he couldn't catch his breath. After about 10 minutes I let him play,  guiding his sweet little finger in the sling shot. After he finally laughed himself out, he would shout "Whoa!" when a lot of things came crashing down or say "Uh-oh," when only a few things fell. I don't think this is educational for him just a way to have fun. But I do use it to my advantage. In between new games he will sign, play more please. But I make him say a random word or at least attempt it and in reward, I let him shoot the next bird.  Whatever it takes to get the words to come out!!

I once said, it is amazing at how many ways you can help your child learn if you are creative in the way you teach. I did this blog to show that there are thousands of ways out there to help you. You just have to be creative enough to find what works for your child's situation.

My Blossoming Boy!

This summer seems like it has flew bye....oh wait, it did! But regardless of how fast or busy it has been it has also been a great one! Christian has gained  5 pounds since around May , no exaggeration! Thanks to all the bolonga, hot dogs, cheese cake and milkshakes he has out grown his 12-24 months clothes (which he has worn for the last 2 years) and can now wear 3t and some 4t's. His failure to gain weight has always been a concern with all his Doc's, but not anymore.

His vocabulary has improved dramatically. His new words consist of;
"Sissy" to compare "ti-ti"
"Sam" one of our cats name's
"sou-side" for outside
"yes"--even though he rarely says it and with a lisp
"ow"
"hat"
"woah"
 *he can now say about 30 words, consistently*

He is still signing a lot. He is putting two or three words together on his own! I am not having to prompt him to make a phrase/short sentence. I haven't been using a lot of signing at home because I want him to SPEAK but we do use it in loud places still, so we don't have to repeat ourselves over and over or yell to communicate with him (we can't all be on his good side). Some of his combines words include;
-color-book
-read book
-more-drink-please
-please-mama
-finished-mama
-jump more please, mama (with jumping ball)

Anyone who really knows him, knows he loves books and could care less about toys. But he stumbled across his first Mr. Potato Head back in May and is now obsessed with it. Anytime he sees one out somewhere he thinks he has to have one, even if he already has one exactly like it. I must say though Mr. Potato Head has been a great tool to use for identifying and saying body parts.  Every time I put it together for him I label the body part-he repeats back what I say (hat and eyes are the only two he repeats perfect)-then he has to show me where his "eyes, nose, mouth, etc parts are. He can identify 7/7 of them correctly to compare just 2/7 a couple of months ago!

He went for his routine hearing test back in July. It was a typical visit-screaming, kicking, crying during the whole evaluation. The Audiologists didn't get enough information from the part of the test that measures his middle-ear function, for the second time in a roll. If they don't get it on his appointment this December they want him to have a sedated ABR to get all the information they need. However, he did give enough feed back in the booth during the actual hearing test and his left ear is still in the normal range.

He can identify all the characters on Spongebob and Toy Story. This amazes me...not because I think he isn't capable of learning. But because he is constantly jumping,bouncing, humming or just simply on the move the whole time he watches either one of these and it just shows he pays more attention to what is going on then what I realize.

He is only drinking from a bottle at nap time and bed time. Using cups with straws are most successful. We are in the process of potty training. This issue is no different than any other...he is being as stubborn as possible about it. But he knows when he has an "eww" (as he calls it) or is wet.

He did well with speech therapy during the summer with a different therapist in a different school. He even did well when my grandmother took him on the days I couldn't because of my own schooling. He didn't do any occupation therapy over the summer because there wasn't enough room to place him. But he kept me busy at home bouncing on his ball and swinging which are his two favorite things.

Lastly, he started back to preschool a few weeks ago. Although he was happy to be back, he was upset the first few days when I left him. He is now back into the swing of things and doing really well. He is following the routine's really well and doing as the other kids do. He is even riding the bus from school 3 days a week and he loves it! I still take him and his sister every morning because of bus schedule conflicts. He loves to play  on the computer at school. Even wearing the headphones on his ears to listen to the sounds, something that he will not typically do at home or for his hearing evaluations. We are continuing to work hard with him so his development and speech will continue to improve. I really hope to hit some big milestone's by his 4th birthday, which is less than 3 months away.

Thanks to everyone who has been asking how things are going with him. As you can read and see he is doing great.

First bus ride home.

Unilateral Hearing Loss

I have mentioned before that every Health Care Professional has there own opinions about the effects of SSD in children. I have came across many Doctors and some Audiologists who believe that my son's developmental delay and speech delay/disorder can not be contributed to him being deaf in one ear. Most want to blame it on the trauma he went through and birth. I know I am not a Doctor, and I haven't had the "proper education and training" in this area, and I don't see and treat a big population of children on a daily basis. But I know what life is like for one SSD child because I LIVE it everyday. I have worked with my son day after day for over 3 years. I see where he progresses and where he does not. I have done my own research. Along with talk to other parents with SSD children, some have speech issues and some do not. I have also talked to adults that have lived with SSD, some have struggled with speech and some haven't. Most of them (children and adults) did not have a traumatic start like my son and still had speech issues!  Most of the Professionals who blame the delay on issues from his birth, are also the ones who said he would never be "normal" either. Everyone is entitled to their opinion and I am entitled to mine. Our family, friends, his teachers and Therapists at school who really know Christian also know their is much more to this boy then what he went through at birth. He is a strong-willed little boy will love, compassion, energy and a smile that shines as bright as the sun. He catches on developmentally more quickly than most people give him credit for, usually the Doctors who visit with him a couple times a year for 15 to 30 minutes and don't see how hard he works and how far he comes everyday. If they spent more time with him they would see he doesn't have a learning disability, he just has a disadvantage of hearing as well as most children and it makes it harder to keep up with development and speech with those as the same age as him.

The reason I am blogging about this subject is because I found a great article about Single Sided Hearing Loss and I wanted to share the article with our followers (most of which are an important part of Christian's life) and you may learn something from it and our followers who are parents of children with Unilateral Hearing Loss as well. I also just felt the need to vent and express while the subject of Single Sided Hearing Loss was brought up.....
http://www.californiaearinstitute.com/ear-disorders-singled-sided-hearing-loss-children-ear-institute.php

I am always interested to hear what other people think about SSD or Unilateral Hearing Loss to any degree , feel free to express or vent if you wish! :)

The Start of Summer

Our summer is off to a GREAT start. It's been a busy one...but a good one so far.  We met with his pediatrician the week before last to discuss OT options for the summer while he is out of school. We decided to send him to the rehab center he attended a couple years ago for PT. He has not started any services yet. No one has contacted me with any information yet, but I will be contacting them soon if I don't get a call soon. I still plan on him getting ST at school through the summer.

His teacher, assistant teacher and teachers aide came to visit him on Friday. They were happy to see him and he was happy to them! He began signing a lot of things to his teacher (although neither one of us know what he was talking about). God truly blessed us when He put them in our life! They mean the world to my family and I and it meant a lot that they took the time to stop by and see him during summer break. I hope and pray that things work out and he will be placed with them next year for preschool.

Last summer it was a challenge to get Christian in the pool. He would kick, scream, cry and be very fearful of the water. But this year is completely different! He loves it!!!! He is comfortable enough to float around in the water by himself (with floaters of course) and jabbers and giggles the whole time he is in there. He worked up enough courage to jump in the water with me (with me holding him) this afternoon, but his head never went under the water. We did it several times.

I started Christian out in a smaller pool this year (which is usually a struggle too) but this year he took right up with it as well!

No new words yet. No new signs either. He is trying to imitate sounds and tries to repeat words often.

Biggest sensory issue so far is chewing. He has chewed two holes in his "squish" (his stuffed dog) and my mom has had to sew it up twice in the last 2 weeks. So oral input is the main issue right now. Chewing gum, gummy bears and fruit snacks is what he prefers. Although he does like the teething vibrators every now and then.

I wanted to send him to a special needs camp that was taking place at the end of this month but my schedule will be full and I won't be able to take him. I am disappointed that we won't be able to go but hopefully next year. My wonderful mother offered to spend her vacation week taking him but I would rather be there with him. I am sure I could learn just as much there as he would benefit from being there.

We go for his routine hearing evaluation in a couple of weeks at Vanderbilt. I am really hoping he will behave and tolerate the testing well so he will not have to be restrained like usual. But I already know his left ear is working good and strong (he hears way too much for it not too) but it is always nice to hear an audiologists say so and a test to prove so.

Hopefully I will have more great things to report the first week of July! :)

Summer Goals

Christian's last day of preschool for this school year will be May 19th. I have gotten very spoiled having so much extra help with him while he has been attending school. He will be out for the next 2 1/2 months and I am going to pick up the slack while he is out. First, I had to figure out what services if any he would receive and what he really needed to be working on over the summer.
First I figured out if I was going to get services for him and where I would get them. I felt as though he needed a break from everything. But I was very scared about him not getting any type of services because he has been receiving some type of therapy since he was 8 months old. It has become somewhat of a security for me. Having people in our life who can help professionally deal with his issues has gave me great comfort, regardless how minor or severe the issue is. However, I also felt giving him a break could push him back. I thought maybe taking him to the rehab center (where he had received PT before) but I talked things over with his SLPA. She felt he still needed services over the summer and told me he could receive them at the school. Which is awesome. I talked things over with his OT and she wants to see him to over the summer if she can get it fit into her schedule. So I know for sure he will get speech once week, still not sure about occupational though. If she feels he really needs it and can't do it, I may have him referred to a rehab center for the summer. But I don't know for sure yet.

Secondly. I had to figure out what I was going to work on with him at home over the summer. I knew regardless of whether or not he got speech or occupational therapy through the summer, I was going to work with him on a issues that still needed to be worked on. Just because I may of allowed him a break didn't mean I was going to let him get lazy!

The things we will be working on for the summer include;

• Yes/No
• He can say no and shake his head no when is asked a question. He can do this very well I might add! But he will say no even if he means yes. His answer is always no. His teacher has been working with him on shaking his head yes which I will continue to do. He can sign yes when prompted so I will continue to work on that as well. I don't care if he verbalizes, shakes head or signs as long as he can answer yes when he should.
• Bottle
• Getting him COMPLETELY off of his bottle. He is still mainly using it when he goes to sleep. But he is 3 1/2 years old and it has GOT TO GO!!!!
• Potty Training
• I hope I can have him going to the potty by the end of the summer, or go outside. He knows when he is wet and has an "eww." I have tried off and on with him over the last year, but he hasn't really been ready. But I think he is now. 
• Communication
• As always, communication is a top priority on my list of things to work on. Considering this is where he is delayed the most. Whether it is signs or verbal...I don't care. I will take whatever I can get. But I will encourage the heck out of verbal!!!
• Sensory
• His two favorite sensory activities are swinging and bouncing on a exercise ball. These are about the only two things he will let me do at home anymore. Which they are great and they do help calm him. But me bouncing him up and down on a ball several hours throughout the day is exhausting. So I am trying to get him into some of the things we use to do last summer, fall and right after he started school. 

I'm going to miss all the help from school. Especially now that I am going to school myself and the extra help is much needed. But, I am excited that him and Graci will be home and we can do things like we use to before school was apart of our life. I know I have got my work cut out for me for the next few months but I am determined to keep working till he is right where he is supposed to be!

Spring Update

1st thing..... in the last 3 weeks, he has gotten about 60% broke from his bottle. One battle that I have been fighting for over 2 years now, but we are finally getting somewhere. He is going without it throughout much of the day....mainly wanting it at nap and bed time. Drinking from his sippy cup is no longer a fight when eating meals or when he just wants something to drink.

2nd thing...he was able to communicate through a situation without one meltdown/tantrum or crying spell.
-He got ski out of the fridge and handed it to me along with the bottle. I got the milk out, put it in his sippy and he shock his head no and said "no, ki" as he handed me the bottle again. I said "NO BABA", poured the milk back into the jug and put ski in his sippy. He took the sippy from my hand, walked off and drank all that was in the cup (1/2 way filled) and then came back, handed me his sippy and got the ski back out and handed it to me. Signed drink and please and then said "ki."
Usually the only communication you get is him only signing please and handing you his bottle. Then a tantrum follows because it wasn't the right drink he wanted. He can sign milk (when he wants it) but he can't verbalize any of the other drinks he wants and I don't know the signs to teach him.

3rd thing...he put the whole back of his head and ears into his bath water!!!! I know this sounds silly to most people but he has never laid back in the tub. He has been trying hard for the last 6 weeks to lay the back of his head in the water, as soon as the least bit touches he gets scared and jumps back up. But the other night he just did it out of the blue and loved listening to the water run into the tub. My husband, daughter and I were praising him like crazy!

4th Thing....We had our first conversation. We were coming home from school about 2 weeks ago and I asked him if he had a good day at school.

He answers, "no."

I say, "why not?"

He replies, "non know ama" (don't know mama)

5th thing...He went to the dentist yesterday to get his teeth cleaned and his check-up. After having 5 of us hold him down (while he screamed like someone was going to kill him) to brush his teeth (with a tooth brush) and have the Dentist look them over. He ended up getting a great report, all his teeth are in great shape! Which is great news and a shock to me considering I have to fight him every night to get them brushed, and I am always afraid I'm not doing a good enough job.

                                                                                                                                    

He is pointing to eyes and saying "eyes."

He is saying "I wike dat" and "I non't wike dat."

(I like that and I don't like that)

He can say "eat" now, instead of just signing it.

He is identifying characters/animals by pointing to them in pictures.

Although he can say "arick" (for Patrick) off of Spongebob.

He can feed himself really well with a fork now!

He has less than 2 weeks of school left before summer break and I am in the process of setting goals, making arrangements/plans until August gets here. I will try to post soon about the summer.