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!!!
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