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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Emotional mess turns into Thankfulness!

I sat down to write this blog today with so much emotion. Joy, Thankfulness, Gratefulness,

Love, Happiness… with a little Pain and Raw Emotions from the past. This past week has brought some of the most wonderful awesome news… In a matter of hours I got word that Brynn will not have to have surgery for his knee! The Orthopedic surgeon said that his kneecap could and likely will pop out of place again some time in his and need surgery, but if Brynn were his child with all that he has going on, he would leave it alone and hope for the best! Wonderful news, I was really dreading the thought of Brynn who is at the moment more stable than he has been in years with his seizures having surgery! Not long after that news came National Seizures Disorders Foundations email with the balance we need to finish Blue’s training…

 Just under $1,600! Amazing that so many have donated and made the impossible possible! What a tremendous blessing to know that so many people have come together and helped make this happen! It should be fairly easy to raise the balance needed and that takes a lot of stress away from our daily

unknowns. We know that Blue will make such a difference in the quality of life for Brynn and Brett. We can’t wait to get her home and feel all the love she is filled with from all of the love, prayers and support that is making her possible. We will always see each of you as a part of Blue, she will always be an amazing beautiful testimony of how God made the impossible possible. We checked

the P.O. Box today and found a bunch of amazing Birthday wishes for Brynn and Brett. The cards show them they are thought of and loves by so many people from all over the place! They were amazed that they each got a card from Canada too! The cards will be a beautiful addition to their wall of Love, Prayers and

support! There was a key in the P.O. Box leading to another box. Which had a Big box from a loving person filled with Paint, Brushes, Paper, Pencils, Cards and even stickers for Abigail! They were so surprised to see that box and were anxious to open it too!
They will be painting for a long time with the two beautiful boxes of love they received from two “Strangers” that have become “Family.” 

Here are a few samples of Brynn and Brett’s work! They both enjoy looking at other paintings and really enjoy painting too! 



With all that amazing, happy, joyful, grateful and thankful emotion it made me see the coming Birthday of Mom and the Anniversary of her murder differently. Every year about this time before her October 19th Birthday I have this overwhelming sadness and tears flow so easy. I noticed it a few days ago… and as usual pretended to ignore it’s looming dark, negative, sad effect on my life. For years, it has become a part of me that I had no control of. I tried year after year to portray to anyone who would listen how wonderful, beautiful she was and how unfair it was that she was taken away so brutally, and so suddenly. It occurred to me today as I was watching the joy on Brynn and Brett’s faces from

their P.O. Box filled with love… that I can no more convey who Janice Estelle Ashcraft was as I could convey how much it means to Brynn and Brett that they are so loved and thought of. I can post 1,000 photos but they could never convey who she was or how she lived. I could write a million words, but I can never convey the effect her murder has had on her mother, her siblings, her children and even the next generation the effect will go on.

Cast your burden on the LORD, and he will sustain you; he will never permit the righteous to be moved.” ~Psalm 55:22
 

I can choose however, to try to stay positive. I have chosen to forgive the person that I hold responsible for her death and I will chose to focus on the positive… no matter what life brings my way.

For the people shall dwell in Zion at Jerusalem: thou shalt weep no more: he will be very gracious unto thee at the voice of thy cry; when he shall hear it, he will answer thee.” ~Isaiah 30:19   I will choose to be sure that my children have all the love that they have missed out by having a broken family, by reaching out and letting the strangers that love, support and pray for them know that they need them. “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,  as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” ~2 Corinthians 4:16-18
 

They will never get a gift from their Grandmother… or many other relatives who are not in their lives. They are however blessed by God to have the adopted Aunt’s and Uncles, Gan Gans and all the wonderful loving people who have stepped up in her place and for that I am forever thankful.

“The LORD is a stronghold for the oppressed, a stronghold in times of trouble. And those who know your name put their trust in you, for you, O LORD, have not forsaken those who seek you.” ~Psalm 9:9
New Video for Blue!
https://youtube.googleapis.com/v/6hk0LlEFv5s&source=uds

Brett’s current common Seizure Type… 

Just because Brett is so darn cute! 🙂

My thoughts on Suffering… and an update!

Suffering is to one what normal is to another is to what devastation is to yet another. Suffering is part of our human existence. There is no way to avoid it and not one of us will escape it. We have all done it and we will do it again. The only difference in us humans is how we suffer, and what we do when we feel the effects of suffering.
“Although the world is full of suffering, it is full also of the overcoming of it.” ~Helen Keller

We are a spoiled generation

of humanity that carries expensive cell phones, has our nails done, goes to the movies but somehow fall short and cannot afford the electric bill. We are spoiled to the point that we feel the least bit of doing without is suffering. We expect to be able to do what we want, when we want it and expect to be rescued from “suffering” when that suffering is just consequences for our actions. No, I am talking about true suffering…

The loss of a Loved One, Persecution for beliefs, Being Bullied, Not having food in your home or basic shelter, Painful Disease… The list goes on… Have you ever read the story of Job? That is “Suffering.”
There are benefits of suffering too. Paul’s thorn in the flesh (2 Cor. 12:7) kept him from becoming proud. Knowing that he had a thorn in the flesh and still kept his faith even though it is not believed that it was ever healed sure makes a great example for me. So we who suffer and continue to fight the good fight and walk in faith can be an example to others. Not only an example but because we have suffered we too can join the ranks of all those suffering and comfort those who suffer.
2 Corinthians 1:3 Blessed be God, even the Father of our

Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.5 For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ.
There are many examples in scripture of suffering that was brought on by transgression. Much easier to not think about, but often we are suffering because we have sinned against our Father and we are simply experiencing the consequences. Like David, we too must face consequences for our actions. For not one is without sin and we all shall reap what we sow. I am not talking about that kind of suffering here either.

So I encourage you, if you are suffering pain, trial and tribulation today, remember…

For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. Romans 8:18


On a more personal note….

as I know many follow Brynnon’s story here… He is stable at the moment, staying for the most part at his baseline. Since we went on July 15th to have it increased,  he has developed a side effect of nausea and pain in the upper stomach area from the VNS and he may have to go back to have the settings changed to see if it will alleviate this side effect. We are waiting on insurance approval to try a stimulant to see if it will possibly help his cognitive disorder. We will try it at home and see if we notice improvement and at his next visit he will be dosed up so that when he has a Cognitive Evaluation they will record any changes from the last one in July. 
I wasn’t really excited about the stimulant at first, but was willing to try when his Neurologist sugested that it may help him retain information in his learning  journey and perhaps even help his slow processing. After researching it and seeing that it is used in lower IQ children and can possibly have a good effect on him. I feel that since he has stayed around his baseline (his normal 4-6 seizures a week) for the most part for several weeks now, and since he is 13, still only Reading at a 1st grade level and overall cognitively functioning at a 6-9 year old level… it is certainly worth a try. I have to admit I have since gotten a little excited at the possibilities and figure anything is worth a try. All in all, we are having a very nice relaxed Home Schooling Summer…. 

Sorry I haven’t updated lately
    We have had a lot going on…
    Will update more soon…
    or perhaps a bit later!

   ~Denise 
“I do not ask You to take away my suffering;
I do not even want to know why I suffer;
but only this, my God….
Do I suffer for Your sake?”
~Levi Yitzhok of Berditchev