Recalculating….

bbb36063997_1838393646206648_5468404218702331904_nBrett and I went on a grand adventure to Service Dog Training Camp for 10 days. Instead of graduating as a Service Dog Team Brett Graduated with his amazing Dog Taylor as a Skilled Companion Team. The reason is that Brett was not able to learn everything he needs to pass the Public Access Test with Taylor independently is he has a disability. I found it painful to watch as those around us struggled to understand how to reach him and  understand exactly what Brett’s disability is. As traumatic and life threatening as Epilepsy is for Brett, his intellectual disability that his Epilepsy Syndrome caused has the greatest impact on his life and his abilities. Last time it was tested, his IQ was 46. He carries a Moderate Intellectual Disability diagnosis, that is just a number and in no way defines Brett, but does explain why he could not perfect complete control and care for Taylor in 10 days. He is after all unable to care for himself completely without assistance. As I drove the 7 hours home I had a lot of time to think and reflect on everything. When we drove there we were mostly on highways, surrounded by farmland. It was beautiful, but pretty desolate. It was boring and seemed like the same scenery the whole way. This is probably what a lecture without visual aids is like for a person with Intellectual Disability. It did not take me long to realize that we were going to be going a different way… when I heard the nice voice say “RECALCULATING….”
  I inadvertently had missed a turn and somehow by the gift of technology managed to end up on the interstate. This route would take me a little longer (more time needed to reach the same destination), had two tolls along the way (would need more investment to get to the same destination) and there were more exits along the way (more visual cues). What a perfect analogy for intellectual disability. When Brett is taught the right way, consistently for a longer period of time he will be able to perfect the commands. This brings me to my point. Intellectual Disability. Most people do not understand how difficult things are for a person with moderate intellectual disability. A Cognitive or Intellectual Disability is when a person has deficits in thinking and reasoning skills. They usually have difficulty especially with abstract reasoning, being able to apply what they learn in multiple situations and grasping cause and effect. Attention spans are shorter, they experience difficulty with staying on task and have a terrible time organizing information. In order for an intellectually disabled child to learn information it must be broken into small concrete steps and presented in a way that they can understand. Each step must be mastered before another step can be introduced, they learn best with  sequential information. Most intellectually disabled people learn best with kinesthetic methods, meaning they need to learn in a hands on way if possible. They almost always need visual aids to get information to stick in the memory bank to retrieve it later too! Brett like his brother Brynn, looks perfectly normal and most would not realize they even have a disability. This is a blessing in some ways, but other ways more damaging. People tend to “look” at the person and expect them to be able to perform according to “age” and not ability. In many ways a person with intellectual disability will get less help and accommodations than a person who looks disabled. A person with Down Syndrome or Cerebral Palsy may “look” disabled but some are actually not intellectually disabled. The DSM-5 list Intellectual Disability as a disorder with onset during the developmental period (before age 18) that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains. To receive a diagnosis of Intellectual Disability they person must meet the criteria deficits in intellectual functions, such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience, and practical understanding confirmed by both clinical assessment and individualized, standardized intelligence testing. The levels of Intellectual Disability are:

*Mild = IQ 55-70

*Moderate = IQ 40-55

*Severe IQ 25-40

*Profound IQ < 25

For more information about the abilities expected with different IQ ranges see:

https://www.merckmanuals.com/home/children-s-health-issues/learning-and-developmental-disorders/intellectual-disability

 

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Watching….

 It hasn’t occurred to me before, funny… I guess I never thought about it, you know how terribly abnormal it is to sit  in the same place, night after night watching… and waiting… for my Brynnon and my Brett to go to sleep. Brynn is usually a little whiny before bed, usually says he does not want to go to sleep. After the last extended event I feel guilty to fuss at him like I did that night before he went to sleep. I have a hard time shaking the thought that maybe he knows… I have seen him throw a fit many nights when nothing happened, but that night stands out and scares me. He stomped his feet and refused to go to bed… he fussed and fussed he was not tired and didn’t want to go to bed. Two short hours later he woke up in an Ambulance… I guess all Mommies with Epilepsy feel the same way, knowing that emotions can trigger Seizures. Of course you have to discipline, but it just gets scary sometimes knowing if he gets overly upset he could go into another seizure.  Sometimes he even says he is scared to go to sleep.  Once we get the 72hour EEG and MRI over, we really need to focus on getting the boys back in their room and hopefully by the new year have a new bunk bed along with a camera so Brandon, Brynn and Brett can all sleep in the same room and we can as a family get some normalcy back.
  There he lays with his “Wubby,” the stuffed animal he has been sleeping with since just after the August 25th extended seizure that caused some regression. I talked to the Neuropsychologist about it, and him rubbing my hair between his thumb and fingers. He said it’s not a problem and he was not surprised to hear it, that with the regression this happens. Honestly, I think he sleeps better with the stuffed toy than he does without it, so be it. When his friend that is 10 came to spend the night, it didn’t bother him one bit to hug his “Wubby” and go to sleep either… 
  So here I sit in the same spot, waiting for them to fall asleep… Brett almost always fast asleep long before Brynn… then Brynn will drift off to sleep… That’s when the watching starts. Some nights Brynn is fine for an hour or two then starts seizure activity, other nights it starts as soon as his eyes close and some nights he is so still and so quiet I have to check and make sure he is breathing…. Tonight it’s just a little twitchy… I hate these nights because I don’t know if it’s going to settle down or pick up… So I sit quietly rocking Abigail to sleep… I think about my Momma and that she will be gone 20 years this Saturday… I think about Brett and what his Seizure activity means, so thankful it has not progressed and that he has actually calmed down a bit the last two weeks. I think about finances, argh, bad idea… I think about the oldest two and their jobs… I think about Brandon and his future… and I pray about all these things, all the children who suffer and all the adults who suffer… and I think to myself, what a sad world we live in… a sad, sad, sad world…. I am so thankful that our Father sprinkles some joy in mine every now and again! ~Denise

Abigail enjoyed her lunch….

Oh yes she did!

Picture Brynn took of his own eye  :0)


   

So much improvement!

I must say that anyone who is having problems with a low IQ child in Reading and Spelling… Please get these two products! AVKO Sequencial Spelling ~ Sequential Spelling is AVKO’s premiere seven-level spelling program for the teaching of the patterns of English spelling within seven normal public school years. Sequential Spelling is great for schools as well as homeschoolers. The sequences are not based on grade level curriculum. The sequences are based on building from easy words to advanced words as from all, tall, stall, install, installment, installation. AND Merrill Reading Program ~The Merrill Reading Program provides targeted instruction to help students become successful readers through carefully paced instruction and practice. My low IQ 10 year old was having terrible difficulty in Reading and was very poor in Spelling when we started using these two curriculum back in August. He is now Reading and Spelling! He is Reading on a 1st Grade level and the Spelling is above a 3rd grade level. These two programs go great together, he often Reads and Spells the same words in the same week. I am so impressed with the AVKO Products, I plan to buy more! The Merrill Readers are great, slow paced linguistic readers, taught in the same way. I really believe that the sequencing is the way to teach low IQ, Reading disabled and Learning disabled children. I am so thankful that this is making such a difference in my Son and hope that this information can help another child. ~Denise