Anniversary Of Christian's Homecoming

It was 3 years ago today that my little man came home from the NICU after being in there for 30 days. I can still remember the Doctor coming in early that morning and telling me the wonderful news that he was able to go home. I was still very sore from having my c-section but I ran down the hallway with tears in my eyes and a big smile on my face. Telling my husband, mother n law, dad, step-mom and grandmother that he was really coming home.  It took the staff most of the day to finish his paper work, do his vaccinations, his circumcision and tie up all the lose ends. But late that afternoon we made our way home and he was welcomed home by his family! My daughter was never allowed in the NICU because of her age and it being the Flu season, so this is the anniversary of the very first time she saw her little brother.

 

Leaving Kosair

Graci and Christian meet for the very first time!

At home in his own bed!

His first day home, New Year's Eve.

The day he came home is just as special to me as the day he was born!

What a difference 3 years can make...........



Sissy and Christian



Mama and Christian

Daddy and Christian

His 3rd birthday Party

Daddy helping him blow out his birthday candles

A big sister that adores her little brother, and who is always there for him!

Going Back To Preschool

I can't believe the kids Christmas vacation is about over with. I really enjoyed having them home all of last week. We got to spend a lot of time together at home and at all the holiday dinners. It was a great way for our family to relieve some stress and forget about everything for a while.



However we have spent this week getting our house cleaned up and back in order. Putting up decorations, cleaning out things to make room for all of our new stuff, and just getting things organized. Trying to keep myself busy and not worry about next week until it gets here, but it is so hard not to think about it. After all my only two kids will both be going to school. I still can't get use to both my kids being in school!!! My daughter Graci, will be 6 in January and started Kindergarten back in August. I did not send her to preschool, she has been at home with me since she was ten months old. Christian only went to preschool the first two weeks in December. Now he will start going back on Monday and will go four days a week till school lets out. I am so stressed out, knowing it will take time for him to get use to it again. I really hope he can get adjusted to it very quick so I can get in some kind of routine again during the week.  Plus, the quicker he gets use to it, the quicker he will benefit from it.  



Eating his breakfast on the last day he attended preschool before Christmas break.

Christian leading his big sis to his preschool room.

My goal is to have him go all day four days a week. But for now he arrives at school at 7:30. I stay with him until 8:00 / 8:15 then I leave him and he supposed to stay till 10:00. If he throws one of his fits for longer then 20 minutes, I am then called to go pick him up. His teacher doesn't want him to hate school or see it as a bad place. When she feels he has had enough, she calls me so hopefully he will realized I am not leaving him there forever. The 3rd, 4th and 5th day he went he made it to 10:00 just fine. The last day he went was really hard for him. He did great at breakfast! But not so well when I left him for 30 minutes. But school had been delayed an hour and he hadn't been there for almost a week due to snow. When he starts back on Monday we repeat the same schedule for the first couple of days or the first week, then add time each day or week depending on how he handles it.

Right now while he is at school, I hang around town or stay with my mom where she works. It is to far for me to drive back and forth everyday. Plus some of the days he has been at school, I can't even make it home before being called to get him. Once he makes to a half day I will come back home or clean other people's houses on the days I usually do. Once he is going a full day, I will be going back to work, unless I decided to continue to clean people's houses. I like being my own boss and having a flexible schedule. But we will see what happens.

But for the next few days I am going to enjoy this time with my kids and try to relax as much as possible. Getting up at 4:00 Monday thru Friday is soon approaching along with transitioning a 3 year old into preschool. Ahhh........

Making Sense Of The Senses

I still remember the day it was first brought to my attention that Christian may have a sensory problem. To myself I thought, "sensory problem, what the....." I had never heard of something like this before but, I thought this is just the same old thing, were they THINK he has something but, after weeks or months they rule it out. Well....not this time. This time his sensory issues would eventually turn into sensory problems. The journey to understanding Sensory Processing Disorder and how to deal with it has been the most difficult challenge I have faced with my son, other than almost losing him at birth. This is one subject I didn't talk about much with other special needs mom's or people in general. This was something that took a while for me to understand and to accept...much like his hearing loss. But now, I am ready to talk about it....and I want to share our struggles with other mom's battling this disorder with their child, and to spread awareness about this disorder. Here is our story......

For those of you who don't know what Sensory Processing Disorder is, I will briefly explain. It is a neurological disorder that misinterprets everyday sensory information. They're seven senses in your body touch, taste, smell, hearing, vision, vestibular and proprioception. Vestibular is input from the inner ear that controls balance. Proprioception controls the muscles and joints in the body. These senses send information to the brain and should automatically make us respond appropriately. For children/adults who have SPD this information is unorganized and is misinterpret in the brain, causing a person's behaviors to be much different than ones without the disorder.




Christian 19 months, "clapping"



I started noticing Christian acted a little different then most kids in the Summer of 2009 when Christian was about 18 months old. He feared grass something awful, he hated to be out in the yard during the day when the sun was shining at its brightest, and the thing he did most differently. He would hold his right hand up to his face, clinched it up and pat it with his left hand. When most people saw him do it, they thought it was just his way of clapping. Which is what it did look like, but when he does it repeatedly throughout the day, everyday, 10 to 15 times an hour (literally)and gazes so hard that he runs into things, gets right back up and goes right back into "the clapping" (what we called it) clearly he is not really clapping, at least not in a functional way. I thought this was just a phase he was going through and thought in a couple weeks or so it would no longer be a problem. But, after bringing attention to it to "his team", they all thought he was best for him to get Occupational Therapy. In convinced he had a problem, I did go ahead and allow a sensory evaluation to be done anyway and talk with a Occupational Therapist about this subject and see what her thoughts were. The evaluation was done, he was in need of therapy for sensory issues. But, I still had no clue about all this sensory stuff.


The clapping only got worse as the holidays approached, not to mention he was starting a new sensory seeking habit. Getting in the floor, backing up to people and kicking/humping them, while gazing deep at the floor and humming. I was a complete mess by this time, felt like a horrible mother and my son was out of control. Our OT was not much help at all, she could not explain to me what was causing him to act like this and she defiantly wasn't giving me any good techniques to help with his "behaviors." The first of the year, 2010, I asked for another OT, praying we would find one that could help me understand him and how to help him. My prayers were answered!!!!! :-)

Once SPD was explained to me in a way I could understand, it all started to make complete sense! I was so relieved to understand it, now I felt like I could truly help him!

A list of Christian's under and over sensory seeking behaviors;

-Vision
*Crossing his eyes
*Gazing deep at objects and everyday things, such as; small toys, pencils/markers, crayons, straws, tables, floor, string, cups, television, lids, forks/spoons, and the list goes on.

-Hearing
*Taking the lid off of his bottle and banging it next to his hearing ear.
*Fearful of having things in his ears, or on his ears.
 *He LOVES to be read to and sung to in his hearing ear. It can calm him instantly!

-Touch
* HATES wearing clothes.
*Refuses to have teeth brushed.
*Refuses to have hair brushed and cut.
*Refuses to have toe nails and fingernails cut. (all these to the point of kicking and screaming on a regular routine basis!)
*Frequently gets in floor or on people and rubs against carpet and people to get that input.

-Taste
*Stuffs mouth with food, as if someone were going to take it from him.
*Excessively chews on objects

-Smell
*Not to much of an issue, but does smell things more then most kids his age.

-Vestibular (balance) **Remember he has complete hearing loss in one ear and perfect hearing in the other...which can effect balance as well!**
*Terrified of heights.
*Doesn't like to be thrown in the air.
*Fears being tipped upside down.

*Will only ride or swing in things he feels secure in.

*Fears being on small riding toys.

-Proprioception (movement)

*Always on the move. Running, jumping, galloping, pacing back and forth through house. Has remarkable energy!!!

*Tends to walk hard on harder surfaces.

Although everyone has some type of sensory issue or another, when you have so many that it constantly effects your everyday living, it is then necessary to have a Occupational Therapist for therapy. To help make your body become more organized, were your brain can process the information better, causing you to have better behavior toward it.

After a few weeks with the new OT "the clapping" stopped with the joint compressions that I did once every 2 hours or more to stop it. But, him being in the floor increased (because it replaced "the clapping") we then came up with a sensory activity chart that was implemented to help. Which it did...if we stay in constant routine, this behavior decreases dramatically. He now has somewhat control over it, as were he didn't before. It has now been a year since "the humping" started, I think now it is more of a habit then a sensory seeking behavior...at least most of the time. There are two ways he does it now. One, he will look up and have a little evil grin on his face, like haha, I want to annoy you. Two, he will gaze at the floor or couch as he kicks/humps and hums (as if he were in another state of mind). If he is doing it to just because he wants to, we stop him. If he does it for sensory purposes, we find other appropriate methods to handle it.

I think this is enough information to share for now...for more sensory information or to view a SPD checklist, go to http://www.sensory-processing-disorder.com/ This website can give you way more info then I ever could.

The Special Mother ~Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen?

Somehow I visualize God hovering over EarthSelecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew."

"Forrest, Marjorie, daughter. Patron Saint, Celia."

"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles. "Give her a handicapped child.

"The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.

Once the shock and resentment wear off she'll handle it."

"I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness.

"The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.

She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.

I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."
 

Hearing Update

Christian went back for his Behavioral Evaluation today. Although he threw some pretty big fits in the sound booth, the Audiologists got all the information they needed for the second time in a role! By the time the hearing test was over, Christian had sweat all over his head. I had sweat so much, my pants and shirt were soaked from holding him down so long and so tight. Needless to say I was hot!  But none the less the left ear is still in the normal range and the right ear is.....well the ear is still there. I guess God just must have put it there for decoration! ha. So, not any change.

We will go back in June for another routine test. Hopefully next time he will tolerate the tympectomy and handle the hear phones over his ears so he can do some of the games. But, thankfully we don't need a sedated ABR.

They recommended speech services while he attends preschool. Have that covered already! They recommended the FM system while he is in preschool. He already has one in his preschool room!

Everything seems to be in place...and going good.

Update on Communication

The last blog entry I did about Christian's speech delay was posted back in January of this year, on another blog that I had. Since then his communication skills has improved very much! It is hard to believe this time last year, he didn't say much of nothing! This year, his verbal words include; "I want, I like, mama, dada, tete (sissy), dog, kitty cat, cat, no, eww, ski, and de" (deer). However, the words he can sign, I can't even keep up with anymore.


The biggest change in his communication skills in the past few months hasn't been the amount of words he has. But, being able to put them together to make sentences as typical kids his age (without hearing loss) can do. However, while most kids may say verbally, "I want more drink please." Christian's is a bit different. He will say verbally "I want" but finish the sentence by signing, "more drink please." Or as were a child would say, "Mommy, read book please." He would sign the whole sentence. So far the most words he has signed at one time is 5. "Mommy, read more book please." Needless to say he has made progress, which is what his "team of people" are the most concerned about. It is not how far he is delayed or how fast he "catches up", it is the fact he is able to make progress! If he hadn't been making progress, they would fear he had more brain damage then originally thought or that he would be falling into the Autistic Spectrum. But, thankfully he is making progress...so it isn't a concern anymore.


Even though he has continued to make progress, it has still been hard for me to make decisions based on how to treat each situation. Communication has been at the top of the list. When he started Speech Therapy at 16 months old, I was asked to teach him sign language. I thought that was crazy, like I could ever teach a 1 year old, sign language! But, I was desperate and gave it a try. Much to my surprise teaching him was the easy part! The criticism and all the loads of information that came along with teaching sign was much more complicated. I was told by many audiology and speech/language professionals at Kosair Children's Hospital, The Vanderbilt Audiology Clinic, and National Center For Childhood Deafness that teaching sign language to any child with a severe to profound hearing loss, regardless of unilateral or bilateral. The child would always choose sign language over verbally talking and taking this approach would be a bad idea. Once you got the child signing, it would be hard to get them to say actual words. However, many other professionals in these facilities mostly agree but, still feel like it is a approach to help with his communication. Even though I made the decision to go ahead to teach him sign until he learned to talk, I now wonder if I made the right decision, even though he can use both.


To further explain, when I ask him to SAY "mama" (which he can) he will instead, SIGN it. When he wants his favorite drink, Ski. I ask him to SAY "SKI" (which he can, and quiet well) he will instead, SIGN drink. He can say "de" for deer and if you ask him to say it, it will sign it instead. He says a word once or twice then signs it from there on out. So, it has left me wondering.....Did I make a mistake?! What do I do to help with this situation? I don't want to take him away from a language he is comfortable with and that he can benefit from at times. But, I don't want him to forget he is capable of communicating verbally either. I have been focusing less on sign and focusing more on his speech. Only time will tell on what method will help him. If only every "educated professional" didn't have a "personal opinion."


I think the most important thing is that he babbles all the time. Babbling is something that he used to not do. A lot of times, he makes no sense and sounds like he is talking in chinese. But, he is attempting to talk and he knows his mouth works. Progress there..... Regardless of what I do....there is one thing I know that will always be effected. To try everything possible, if something fails, try something else. The main thing is to never give up. I know in the end, we will find a way to get through this challenge. After all, we got this far didn't we!

Adapting to Hearing Loss and Speech Delay

How does Christian adapt to his hearing loss?

Well, I guess it depends on how you look at it. I noticed he acted different when he came home from the hospital before he was even officially diagnosed with hearing loss. I had never seen a baby that was picky about which side you laid them on. Christian was very picky as early as one month old. If you laid him on the left side (good ear) he would cry or get fussy but as soon as you laid him on the right (bad ear) he would stop. Why? When you cover up the left ear he can't hear much or nothing at all. He is 2 years old now and he still refuses to lay on the left side unless he is in a deep sleep. The bath tub could create problems the first year as well. If you laid his left ear in the water or water was poured over the left ear he would cry or at times scream. It never bothered him to have his right ear in water or have water dumped over that ear. He tolerates it much better now..he still doesn't like the left ear to be emerged in water but pouring water on that ear isn't as traumatic for him anymore. I think he has got use to it. Riding in the car can be a challenge to him. If you place him behind the driver's seat his good ear is next to the door and speakers. Making it harder for him to understand you or at times to hear you at all. So, if we place him behind the passenger seat his good ear is in the middle and he has a more balanced sound between the radio and someone talking, making it easier to hear. Restaurants can be a challenge. If it is loud or noisy and you are on his bad side he usually won't respond to a word you say, because he can't hear you or your words are distorted to him and he doesn't realize you are talking to him. If you call is name or talk to him on the good side he almost always responds depending on how loud you talk. But, sometimes we get lucky and a restaurant isn't busy and is quite and him hearing isn't as much of a problem. Of course on a daily basis if a t.v, washing machine, radio and such is on in the back ground he may not be able to locate your direction at first, have trouble understanding what you are saying and sometimes he may not hear you at all depending the volume of things and how far away he is. Sometimes he mistakes what you are saying...for instance, if you say "please" he will sign "cheese" or if you say "look" he may sign "book" and most often if you say "stop" he will sign "dog." As long as it is not real noisy and he isn't to far away from you he does pretty good with hearing everything.


Speech delayments?

Every medical professional has there own opinion whether or not children with "single sided deafness" have speech delayments or not. Some say they may have them and some say there shouldn't be any problems with speech. Everyone is different and handles it differently. As for Christian he has speech delayments. From 15 months to 25 months he could only say "Mama and cat" and not up until the last 2 weeks he has started saying "yeah and dada." He still babbles and jabbers a lot throughout the day but there are no real words. By the age of 2 he should have 240 words which includes putting words together to make short sentences or phrases. He only says 4 words and 2 words are brand new to his vocabulary list. So, how have I been handling this problem? He has been receiving speech therapy since he was 16 months old. Even though he is speech delayed he is still able to communicate, how? At 17 months old I started teaching him sign with the help of his speech therapist. He can now successfully sign 24 words. Words include; "finish, more, sleep, eat, milk, cheese, bath, car, dog, deer, baby, sqoosh (his favorite dog), ball, book, shoes, rain, sit, fish, teddy bear, cereal, daddy, apple, drink, and play" the newest one! About 4 to 6 weeks ago he started putting words together. Such as, "more milk, more cheese, eat more, more cereal, and finished book." His words continuously increase...he learns a new word every week to two weeks. Most people with "single sided deafness" learn to read lips. He pays more attention to your hands then lips so lip reading is not a good option for him right now. Signing also benefits us in a restaurant. If someone is on his bad side and Christian can't hear what someone is saying to him, you can sign to him and not have to yell to communicate with him. It also cuts down on his frustration with having to concentrate so much on what your saying. Some people criticize me for teaching him sign and some people praise me for it. Everyone is entitled to their own opinion and personally I couldn't care less what people think! I have to do what I feel is best for him and signing works in his case. In the beginning my goal was not for him to become fluent with sign it was to simply give him a way to communicate. Give him a voice. Through the hard work and dedication on his part and his family he can communicate despite being hard of hearing or speech delayed. We still strive to get him to talk verbally and he tries really hard to say the words we want him to repeat. But, almost always the wrong sounds come out unless it is mama, cat, yeah and dada. His father and I want him to thrive in life and we will do what ever it takes to do that...even if it means taking a different approach then most kids his age. If God forbid he ever loses the hearing in his left ear and goes completely deaf we will still have a form of communication. But, regardless we will continue to encourage both and hopefully soon he will be talking all the time and be able to sign as well

Christian's Hearing Loss

My son was in the NICU for the first month of his life from complications at birth and as a result he didn't get his first newborn hearing screening done until 26 days old, and failed in the right ear. He had a ABR (Auditory Brainstem Response), done while he was asleep when he was just 7 weeks old, and it showed a significant hearing loss. But, he was referred to a University who could handle this situation and give him an accurate diagnosis. He had his first sedated ABR (Auditory Brainstem Response) done on May 1, 2008 at 5 months old and was diagnosed with severe to profound hearing loss in the right ear and had normal hearing in the left ear. We took him every 3 to 6 months to have Behavioral Evaluations (BE) done and everything seemed to be going okay. In July of 2009 the BE indicated he was losing hearing in the left (his good ear.) So, he had another sedated ABR done in November of 2009... 3 weeks before his 2nd birthday. The ABR showed normal hearing in the left. They tested Christian all the way up to 100db in the right and there was no brain response. No response at 91 db+ is considered profound (complete) hearing loss. 91 db is like the sound of a push mower. I was so thankful Christian still had normal hearing in the left that he didn't hit me that he was deaf on the right side until we left the hospital. When I finally thought of the audiologist saying the right ear was completely gone, I began to cry! I was mad and I was angry. But, then I thought to myself....he was deaf in that ear yesterday and we managed just fine. So, there is no reason why we couldn't today or any other day. Then I thought to myself "what if the left ear goes?" I started to lose control again and then I thought "If it is God's will then we will find the way to manage." That is still what I think about it too this day!

So, Are you wondering what caused the hearing loss?

Well, so am I and everyone else in his life. We don't know 100% certain what caused it and more then likely we never will know. He had a CT and MRI scan done in October of 2009. Neither one of the tests revealed anything abnormal in his ears. He was diagnosed with Sensorineural Hearing Loss (meaning nerve damage.) Which is probably the best possible answer. Reason number 1, when he was born he has hydrocephalus(extra fluid on the brain) and had a blockage to the blood supply in his brain which could of put pressure on the nerves and could of caused the nerve damage. Reason number 2, he was on several ototoxic medications that have been known to cause hearing loss. Reasons 3 &4 are being on a ventilator for over 5 days (he was on one for 8) and having low apgar scores (his where 1 at 1 minute, 2 at 5 minutes and 6 at 10 mintues) which are very low! I personally believe with all my heart it was the pressure on the nerves from the fluid...but, there is no way to prove it! But, it is any ones guess and those are the possibilities.

School: A New Beginning

For the past 3 years, First Steps (an early intervention program for delayed/disabled children from birth to 3 years) has been a HUGE part of our life! Having a Speech Therapist come once a week. An Occupational Therapist come 1 to 2 times a month. An a Developmental Interventionist come twice a month, until 3 months ago, when she started coming once a week. Educating me in how to help my delayed son make progress. But on Dec 1, Christian turned 3 and had to exit the program. Now he is taking his next step to help with his delayments.... transitioning to preschool!

Christian with his Occupational Therapist and his Developmental Interventist.

For months I have questioned myself, "Should I really send him?" Thinking how crazy it would be to send a 3 year old to school who is still on the bottle, not potty trained, has limited verbal skills and who is very fearful of new things, easily frustrated and has a big temper. Not to mention his sensory problems, hearing loss and developmental delay. Everytime I questioned myself, it always ended up with me thinking how stupid of me it would be not to send him to a place that would help him. I have always known how far behind Christian has been. But, I don't think Ben, my husband, really realized how far behind he was, until a month or so ago. When a little girl who is about 7 months younger then Christian was talking in complete sentences. When Christian has limited speech. We aren't trying to compare our son to bring him down, we are just trying to get an idea of where he is at so he can get the help he needs. So, after months of talk and thinking Ben and I decided to send Christian.


The process of getting him into preschool has been very long. He has had several evaluations and testing done. Meetings to discuss him, his issues, and make sure everything has been gone over. Not to mention the normal exams before entering school. Although the process wasn't easy, it did make our decision a lot easier to send him. We now know the areas that he needs to work on how far behind in them he is. He will continue to get speech therapy for his speech delay and occupational therapy for his sensory issues while he attends school.

Today was his 3rd day of school. The first two days were quiet painful. He loved being in the classroom while I was there. Transitioning to the cafeteria and gym was hard, and he didn't like it when I left him for an hour the first 2 days. Today however, was much better for him! His day started out great in the classroom, but transitioning to the cafeteria for breakfast was still somewhat difficult for him. He did walk there today, unlike being carried while crying the last two days. He hated being in his little high chair (throwing a fit in it) but calmed down shortly, long enough to eat the sausage off of his pizza. Which the two days before he cried and didn't eat anything! He went back to the classroom and I slipped out at 8:15. I waited for his teacher to call me....and waited....and waited. At 9:15 I still hadn't heard from her, which the last two days I had been called by that time to come get him. I couldn't take it anymore, I called them. They said he was in the gym playing with the kids having a great time! He hadn't cried! I was sooo excited. Our goal was to get him to stay to 10:00 today and he did! I picked him up at 10:15 and his teacher was impressed with him. She said he played and interacted with kids and engaged in some of the activities. She said his day from yesterday to today was 100% better! Now if he can just continue to have a good day everyday! hahaha....
I am looking forward to seeing the good school will do for him...and myself. I must admit it will be nice to have some help with him. Being able to leave him in an environment were he can learn and I can have a little time to myself will be nice after 3 years. It does break my heart that my baby is growing up and attending school, but it is so worth it knowing all the help he will get!