Progress Progress Progress

Now that we know what we know about Tanner...it's time to enjoy our lives and mold our lives to help better serve him to always allow for progression and avoid regression of any kind. We have noticed now that the Dr. upped the dosage on the Clondine (his blood pressure medicine) he has been sleeping a lot better at night. For awhile the medicine was causing night terrors, but luckily those side effects have subsided. But with the medicine being increased, we have noticed a huge change in his behavior throughout the day as well...it keeps his levels more at a normal range to avoid any type of over excitement. We have noticed that it has increased his speech a lot too, as he has been able to calm down enough to listen better, there for talk better!! We couldn't be happier to see all the changes and progression he has made just since 2/16/2012... One major thing that has been a progression is the use of forks and spoons, he now enjoys to "stab" his food and eat it on his own...
On 03/14/2012 When I went to my moms house on my lunch break I was telling my mom that the night before, Tanner and I were saying what color all the dogs were..as I was talking to my mom Tanner says, "What color is Colt".....I was shocked, Tanner has never asked questions on his own. Engaging in a conversation isn't something we have really done, so I said to him "Brown"...then he starting walking around saying "What color is colt? Brown" The fact that he actually initiated the conversation was major to me...Normally our conversations is just asking Tanner a question and getting a 1 to 2 word response!! It just gives me more and more hope that he will be "up to speed" in no time!!! :) That night before though, unfortunately it was MELTDOWN drama that whole evening...nothing was going "his way". We went on a bike ride to enjoy the weather, but after we came inside all Hell broke loose! He didn't like the way his hot wheels truck was rolling, he ate apple sauce and when I threw the container away it was like I just threw away his whole life, he was running around the house kicking walls, screaming, and yelling...days like that you have to just be strong even though you just want to break down and cry because you dont know what to do or how to help...explaining to him that "its ok" doesn't mean anything to him so sometimes you just feel powerless.
Tanner is such a smart little boy and Kevin and I couldn't be more proud of him. He is already counting to 12..and we are counting coins...we have also started slowly working with telling time..He has down 6:30! :) He knows his colors...it just amazes me how much he picks up every single day!! :) I cant wait to see what the future holds for our little boy genius!!

Sensory.....

Sensory Integration or Sensory Processing Disorder

Sensory processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration."

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.  Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. 

How Sensory Processing Disorder is treated

Most children with Sensory Processing Disorder (SPD) are just as intelligent as their peers. Many are intellectually gifted. Their brains are simply wired differently. They need to be taught in ways that are adapted to how they process information, and they need leisure activities that suit their own sensory processing needs.

Once children with Sensory Processing Disorder have been accurately diagnosed, they benefit from a treatment program of occupational therapy (OT) with a sensory integration (SI) approach. When appropriate and applied by a well-trained clinician, listening therapy (such as Integrated Listening Systems) or other complementary therapies may be combined effectively with OT-SI.

Occupational therapy with a sensory integration approach typically takes place in a sensory-rich environment sometimes called the "OT gym." During OT sessions, the therapist guides the child through fun activities that are subtly structured so the child is constantly challenged but always successful.

  (http://www.sinetwork.org/about-sensory-processing-disorder.html)

For Tanner, as far as his sensory issues goes and what effects him; FOOD...Tanner does better on the more bland food, less odor, and soft textured food. The kid loves Oatmeal, yogurt, jello, and applesauce. He is starting to eat more variety of foods, but it kinda just depends on what mood he is in too!

Clothing; certain types of material on clothes bug him, TAGS are a MAJOR ordeal right now, also if its a shirt that has any embroidery that is on the inside of the shirt it irritates him. 

Textures; to feel certain textures, like playdough it feels weird to him and he's not totally crazy about it but is starting to like it more. Sand, he will kinda touch it but then wipe his hands off really quick because of the feeling of the sand. 

We are actually getting what is called a "Weighted Blanket" made for him, this will help calm down his senses at night and help allow him to sleep. Also a weighted vest, this will help him in public places that he is not familiar with and the weight of the vest will help keep him calm and to avoid any type of tantrums.

"It may be DAMP, but your not raining on our parade!"

  "If you have to judge people, judge them based on what they can do, not on what they cannot. Judge them based on who they are, not who they aren't. Otherwise you're judging based on your own shortcomings"----Anonymous

  So as I mentioned in my last blog that Tanner was diagnosed with the condition called DAMP. When the Dr. said that, I thought I might be hearing things I guess cause I had never heard of it. DAMP= Deficits in Attention, Motor Control and Perceptual Abilities.

The DAMP syndrome, a medical concept of developmental disorder that stands for deficits in attention, motor control and perception, originally proposed by Gilberg of Sweden and others, has been adopted in Japanese as it is due to lack of better Japanese words. While the concept is still unfamiliar in this country, it is clinically important.
DAMP was defined in the 1970s and must meet the following requirements: (1) cross-situational impairing attention deficit, with or without impairing hyperactivity/impulsivity, and (2) impairing deficit in at least one of the following areas; gross motor, fine motor, perception or speech-language, and (3) the ABSENCE of clear mental retardation and cerebral palsy/other major neurological disability. Severe DAMP is diagnosed in cases showing the combination of (1) and all of the deficits listed under (2).
Later, due to the fact that children with perceptual abnormality virtually always had some impairing motor control problems, and in order to comply with DSM, the international diagnostic criteria of the American Psychiatric Association, DAMP has been defined as the combination of ADHD (attention deficit/hyperactivity disorder) and DCD (developmental coordination disorder). Defined in this way, DAMP constitutes a sub-type of the diagnostic category of ADHD, accompanied by DCD. Gillberg and others used this concept of DAMP to conduct large-scale cohort research on a continuous basis in multiple regions in Sweden, which show that 7.4% of all 7 year olds had ADHD alone, that 7.3% had DCD alone, and that 6.6% had the DAMP syndrome, the combination of both, out of which 1.7% had DAMP in severe form. DAMP accounted for about half of all the ADHD cases. In mental health terms, approximately 60% of those with severe DAMP are diagnosed as autistic spectrum disorder (PPD or pervasive developmental disorder according to DMS-IV based diagnosis).

MeDiCaL JaRgOn!!!!

Tanner does not have severe DAMP and therefor did not fall into the Autism Spectrum Disorder...though the Dr. said he is showing red flags for possible Asperger Syndrome but it was still to early to tell. The DAMP condition effects where a childs thought begin, so instead of thinking from their frontal lobe of their brain, the thought will begin in the lower part of his brain. This is the same area that his blood pressure is controlled. The clonidine, which is the BP medicine has now helped lower his BP, where he can actually sleep and it also keeps him calm through the day so that he does not get over stimulated.

When you hear a diagnosis of your child it feels like you just got kicked in the gut...we can go one way with it or the other...do we choose to be sad a depressed or do we find the positive and move forward!! Kevin and I are strong people and we choose to move forward. I try to stay as strong as possible in front of Tanner so that he does not sense there is anything is wrong and if it wasn't for Kevin I wouldn't be that strong. It seems like people tend to focus on the mother of a child, but I think Kevin needs just as much recognition and support, he might have a strong exterior but this is still his boy and this is hard for him too! Luckily Kevin and I have such a strong relationship, not only with each other, but with God.  We are a team and we will do whatever it takes to keep Tanner on the right track, to provide him with all the necessary tools to progress at no matter the cost!

The one important thing when people read this, especially those who have never been around Tanner, I want them to know Tanner is just kid, just like any kid, he laughs, he plays, he likes toys, has a sense of humor, likes to watch cartoons, likes to play in the water, loves bubbles etc..the list goes on!!! He is such a smart kid too. So even though he has this condition it doesn't change who he is and should not be isolated for any reason!! We have been provided the tools to help him and are already just from the Dr.'s appointment have made HUGE progress!! on 02/22 he was eating with a fork by himself, I know to some of you that does not sound like that big of a deal, but it goes to show that he had made progression in his motor skills. As the dr told us we are no longer to have the TV on or to have any kind of background noise as this will overstimulate him and just interrupt his thinking....That Friday after his appointment, I had the tv off all day and it was amazing how he didn't have any tantrums, less screaming, and actually stayed focus on something that he was doing. Later that evening we wanted to see how difference the tv would make, and he was like a light switch and instantly threw a fit and was screaming. It was crazy to us to see how big of difference that made (of course we turned it off really fast). But you can't help after that to feel somewhat sad for Tanner to think that he is this kid trapped in a different persons body and that for the past 2 years, I cant imagine what his body was going through and we had no clue!! Same thing for when we would get on to him for acting out or being crazy in public...He wasn't acting that way because he is a bad kid, Tanner isn't a bad kid at all, he just can't control his anxiety or his frustration. That's the part that is frustrating for Kevin and I, is that people see him and since he looks like any typical child, when he does act up you can tell people are judging our parenting skills...if they only knew! I think one of these days I might just have to say something the next time we can tell they are judging us..Might teach them a lesson not to judge...and as bad as this sounds on my part, I hope they would walk away feeling bad about themselves! I guess its just hard as a parent but I think it's harder right now cause all of this is new for us and we are still having to adjust too!!

"The only disability in life is a bad attitude"----Scott Hamilton

            (Scott Hamilton actually as a kid was also seen by Dr. Gustavson, the Dr. that Tanner is going too!)

"The only way we can be there for our children is to be there for ourselves"-- Anonymous 
                       

                           Tanner and Charlie! T is such a good big brother and loves Charlie so much!

Tanner's Journey~ "What's Wrong with You? NOTHING, God made me this WAY!"

I wanted to share with everyone what is going on in our life with Tanner because I think it is important to tell his story. I want his story to be inspiring and to keep this as a journal, as something to look back in a year from now and realize how far along Tanner has progressed. We want to be an advocate for our son and not deny the fact that there isn't any challenges in his life....


Tanner was always a very happy and healthy baby from the beginning. He is so full of spunk and has the funniest personality. I swear he has the most contagious smile and laugh I have ever came across, not matter what kind of day someone has to see that grin and to hear him you can't help but to smile too! As Tanner is growing up we have really enjoyed every stage of his life! I don't think Kevin and I knew how much having a kid could change your whole prospective of life. We have always talked about how he's going to play soccer, baseball, basketball, football...go to college..you can't help but think about the future for your kid (even though we don't want it to go by any faster than what it already is!) but sometimes for your plans you soon realize that those aren't God's plans. A few months before his second birthday we noticed he started doing this "twitch" with his hands, at first we didn't think anything of it, we just thought he was getting really excited. When the twitch started to become more frequent we realized that something just wasn't right. One night Kevin and I just had a break down and we feared the worse and knew we needed to take him to the Dr. but at the same time dreaded the thought because we didn't want to hear something bad. On November 7th we took him to his PCP. After giving him our concerns, not only the twitch, but his speech was still delayed, he got easily frustrated, his social skills, and the way he "played" with toys (he is more fascinated on how toys work, rather than just playing with them)...after the Dr. evaluated him, he then told us that he believed that Tanner might be Autistic and has sensory issues, but wants us to see a Pediatric Behaviroal Specialist to get an accurate diagnosis. Our world stopped, our hearts were heavy!! I knew going into the appointment that there might be something wrong but I was in denial and to hear it from the Dr. it just confirms your worst fears as a parent. After that appointment we were set up with a speech patholigist to possibly start speech therapy. At his first appt with her she tested his middle ears and he did not pass the test. That test was to check the frequency of his middle ears, his were flat, which meant there was fluid. She wanted us to re test in a week, once again still flat. All that was a surprise to us considering he was 2 and has never had an ear infection to our knowledge. We were then set up with an Ears, Nose and Throat Dr in Stillwater. He told us that there was so much fluid back there and that since he has never had an infection it has gone unnoticed for so long that it was the consistency of honey. Since I was pregnant with Charlie and do possibly anytime, the Dr. wanted us to have Tanner's surgery soon as possible. So on December 8th Tanner got tubes put in his ears! He was such a trooper and bounced back from surgery pretty fast! That next week I got a call from the specialist that they were moving Tanner's appt from  May 2nd to February 16th. I was so glad cause we were ready for some answers, ready to know whats going on for sure and what we can do to start the progress!! On December 23, Charlie Brice joined our family!! It was amazing, our family is now a family of four! Having Charlie has been such a blessing and at a time with all this worry and sadness he lifted our spirits back up!
February 16th finally rolled around...we head to Tulsa early in the morning! I was the biggest bag of nerves and thought I could throw up any given moment! We get checked in at 8:30 and in the lobby Tanner is having so much fun, there is a giant fish tank, and let me tell you, he let EVERYONE know that there was a FISH!! Just sitting there watching him have so much fun, smiling, just the innonce of a child, not knowing what a cruel and prejudice world it can be out there, it breaks my heart because here he is an "average" looking child who is being so misunderstood by people in the public as a not well behaved child. We get called back and we are in this room waiting for the Dr. Being strong for your child is important so that they know that everything is ok, but being strong can be very difficult when all you want to do is cry or scream at someone to get out your frustation....just to scream WHY!!!!??? Why MY child!!
The Dr. walks in and introduced himself and explained that we were going to be in there for at least an hour, that we were suppose to act like "furniture" in there, to ignore Tanner, that the Dr wanted to see how he acted, wanted to see how he gets frustrated, wanted to see how he interacted with the environment etc. The Dr. continued to talk to us while also observing T. After about 20 minutes into the appointment the Dr. says "I can tell you right now that this is not Autism"....can you say SIGH OF RELIEF, but then followed up by saying he thinks he knows what this is but wanted to continue to watch him. While watching him we did talk about the Sensory Issues, because he did clearly have those and that all of his 5 senses are extremly sensitive. Tanner is an extremely picky eater, it seems like the kid only eats oatmeal, applesauce and yogurt. Lately tags on his clothes bother him. And when we go to new places or in crowded places, he is not always the best child, he tends to scream and get really ansy to be on the move and sometimes its hard to control...well the dr. was very good about explaining the sensory issues to us..The eating: when foods are a stronger odor, that effects his nose and his taste so its harder for him to eat it, also textures of food are a really big deal with him, he tends to like the softer foods. Tags will bug him because of the "touch". As far as his general environments, he is constantly overstimulated because of the noise, for example; if the tv is on in the house in the background, for Tanner that is like being at a rock concert for him, its really loud and so he feels like he has to scream to hear himself over the noise...and this will lead to the tantrums because after so long of the noise and the overstimulation his body just cant handle it anymore.
After going through the sensory issues the Dr. has came to his final diagnosis that Tanner has a condition called DAMP (Deficits in Attention, Motor Control and Perceptual Abilities) ....(I will explain more of the sensory issues and DAMP in the next blog..but here is a brief overview) Tanner with this condition, thinks in the lower part of his brain (normally we all think in the frontal lobe of our brain); in the lower part of the brain is the same area the your blood pressure is controlled, so for Tanner when he thinks, a lot of his thoughts become short circuited and his blood pressure will rise. Any new environment  or pretty much anything, he becomes so easily stimulated because as he is thinking his blood pressure is rising. That's why, for example, waiting in the lobby he was bouncing around screaming FISH; in Tanner's mind his blood pressure is rising by getting overly excited about the fish and he is now in at his "rock concert". It also explains why he never sleeps and why it takes us anywhere from 30-2 hours to get him to fall asleep, his BP is so high his body can't relax enough to allow him to sleep.
Of course still just sitting there trying to absorb everything the Dr. is saying you can't help but to ask the question "How is this going to affect him once he's school age, or just in life in general?"....He let us know that words like "no", "yes", "please", "thank you" etc...he has no concept of them. Taking instructions, even like "Tanner, sit down and eat" don't mean much to him. (so of course in the back of my head things are all starting to come together of why Tanner would never listen to us, it didn't matter what we did. I just thought he was that stubborn) The Dr continued by saying, Tanner will never be a private in the military because he will never take instructions, but being some Geophysics or work for NASA would be easy for him!!! (WHAT???).... He said with this condition he will be extremely intelligent, so to answer the question of how it will affect him in school..he said he will be the smartest kid in class! (Well whats wrong with that!) He said to put it this way...think of Albert Einstein, he couldn't always order his own lunch but though of the Theory of Relativity and E=mc2!! I told the Dr. that I feel like he uses words out of context, and I explained to him that he knows what a choo choo train is, he sees one he says it, he sees railroad tracks he says choo choo train, but for some reason everytime I open up the dishwasher he pulls out the bottom rack and calls it a choo choo train; the dr said think about it, he sees a box on wheels on a track..he sees a train! Goes to show not to underestimate a childs mind!! That explains too why when Tanner plays with toys, he studies everything, he figures out how the wheels are working and that the wheels are making the truck go...or why he opens and closes doors because he is figuring out that it works on the hinges...All the repetitive behaivors are because they are not only satisfying all his senses but he doesnt care to play but rather wants to know his world and how the world works!
So now we know...now puzzle pieces are being put in place, and looking back in Tanner's life, things are making sense now...we are starting to realize why things were the way they were!
The dr. prescribed Tanner on Clonidine, which is a blood pressure medicine. It will help lower his blood pressure throughout the day to keep him calm and so that he does not get overstimulated, it is also for bed time to relax his body so that he can actually relax and go to sleep! We are also suppose to be using a program that is called "Floortime" to help him learn and progress in the way that he can. And now its time to let the journey begin!!!

"Life's a rollercoaster and I'm not strapped in!"

2/21/2011

My name is Janna and I have decided to start a blog because there are so many moments in life that you just want to keep for ever and by sharing these moments we can always look back and remember what we have been through. A little background for me; I started dating Kevin in February of 2007 and in November that same year we got engaged and later married on May 9, 2009. He is an amazing husband and my best friend, I love the relationship that we have with one another, its open and honest, fun and we have a lot of trust and respect for one another. The day Kevin and I found out that we were pregnant changed our world forever and on October 15, 2009 we were blessed with our first son, Tanner James. He was such a happy little baby, very alert all the time and has the biggest smile I have ever seen! I never realized how fast and how much you could LOVE a little person! Having Tanner made us open our eyes to what is really important in life. Of course babies grow up so fast and on his first birthday it was hard to hold back some tears because you realize how time flies and they just don't stay little long enough. When Tanner was 18 months old we became pregnant with our 2nd son, Charlie Brice. We were very excited to be expanding our family and when we found out it was another boy we were thrilled that Tanner would have a little brother. On December 23, 2011 Charlie was born. He is a very calm and laid back baby, he looks so much like Tanner when he was born. Charlie, too, is a very happy baby and loves to smile!
So much has happened in between when we first started dating and to where we are today. I am blessed to be on the journy that we are on but sometimes at times it feels like a rollercoaster ride. My next few blogs will mostly be about Tanner...I want to share his story with everyone because I think that it is important for people to know what is going on with him and it is important to be his voice and be an advocate for him! I want to bring awarness to people that in life we all have many differences and to let our own prejudiceness get in our way we are truly not seeing who people are or even who we really are. I hope that I can shed light on many topics to help other people and be a support for anybody if they need it. "Diversity is not about how we differ. Diversity is about embracing one another's uniqueness." -Ola Joseph