Keeg visited the Immunologist this past week. I don't think I've ever seen so much blood drawn in one setting. We return in 4 weeks to get results. The doc did say that he hoped that it was cyclic neutropenia and that his WBC aren't always low. I let him know that Keeg has never had blood drawn and it shown his WBC or Platelets at a normal level. *sigh The doc and nurse assured me that if the blood tests show something that is "urgent" they'd call me immediately.
Keeg had his Occupational Therapy evaluation and we've already gotten the results. He has quite a bit of gross motor skills and more sensory issues then I realized. He'll be getting OT once a week along with some other suggestions made by OT.
This week Keeg will have his Central Auditory Processing Disorder evaluation done by an audiologist. We just got his little brother's results in the mail today.
We're adapting. We're discovering the path that we are walking, together. It's not easy, and I never really seem to know what I need to do to help him. I am trusting in God to show us the way.
Please keep praying for Keeg.
Thank you.
Monday, September 26, 2011
Sunday, September 4, 2011
Perspective
Written by Mom:
For the last two years, I thought my son was being defiant. He was almost a teen when it first seemed that he was no longer listening to me, or doing as I asked. I assumed that he was going to be as rebellious as I had been at that age. As the offenses appeared to grow larger, he was grounded and fussed at.
I've spent the last few months letting go of those terribly wrong ideas I had. My son isn't defiant or rebellious. He has Asperger's and his world is different from mine.
Today, Keeg came out the door so emotionally distraught I was instantly in a panic. He was crying, shaking and holding a washcloth to his mouth. I was frantic....what in the world was wrong with his mouth? How bad was he hurt? What happened?
Keeg pulled the washcloth away from his mouth, showing a small speck of blood. I was confused. He was soooo upset, was there another injury? Through choking sobs, he explained to me that, as I had requested, he had stayed with his 5 year old brother (who is also on the Autism Spectrum) in the bathroom while his little brother was in the bath. Keeg explained that they had been playing well and having fun. Then, Keeg didn't do something exactly the way his little brother wanted. His little brother threw a Hot Wheel car, hitting Keeg's lip. It left a small cut in his lip, and knocked one of the brackets on his new braces loose. I still couldn't understand all the heart wrenching sobs. I understood that it hurt, but Keeg's despair was so intense.
My impulse was to tell him to just calm down, that it wasn't that big of a deal, and it couldn't hurt that bad. But, my inpulses have been terribly wrong the last two years, and I've learned to stop and try to look at the situation through Autistic lenses.
With a heart wrenching cry, Keeg said, "Mom, I was playing with him and staying in there. I was being good! I didn't do something just the way he wanted, and he hurt me Mom! I never want to play with him again!"
And suddenly, I saw.
Keeg wasn't wrecked with sobs because he was in physical pain. He was wrecked with sobs because even though he'd done his best and done everything "right", his little brother had hurt him. He was heartbroken. He didn't understand what had happened, he had not anticipated the event that happened, and he felt crushed under the weight of not having full understanding.
As I looked at Keeg, I saw him through my Autistic lenses. I saw that, just as when he was younger, he needed me to hold him, comfort him, and tell him it would all be OK. I realized that, as he had grown taller then me, begin to shave, and entered his teenage years, I had thought to put behind those "childish ways". I had never seen him as clearly as I saw him today.
Keeg is struggling. The world doesn't make sense to him. He doesn't realize why children his age don't hang out with him. He doesn't understand why people walk away in the middle of conversations. He doesn't understand why everything can seem to be going along a logical path, and suddenly an unexpected twist or change occur. He feels a depth of emotions that most teens have already learned to leave behind in childhood and that adults usually never return to. He feels despair at the overwhelming feeling that he never really knows what is going on.
Keeg cried out in despair a couple of weeks ago and told me, "I don't want to have Asperger's!"
I am his mother. I love him more then I could have ever dreamed possible. Together, we'll find the beauty of Asperger's and how it completes him and makes our family whole. Together we'll brave the world that is little understood and doesn't make sense. I will be his interpreter. He will achieve independence and accomplish his greatest dreams.
And through it all, he will teach the world that "different" is more then OK.
For the last two years, I thought my son was being defiant. He was almost a teen when it first seemed that he was no longer listening to me, or doing as I asked. I assumed that he was going to be as rebellious as I had been at that age. As the offenses appeared to grow larger, he was grounded and fussed at.
I've spent the last few months letting go of those terribly wrong ideas I had. My son isn't defiant or rebellious. He has Asperger's and his world is different from mine.
Today, Keeg came out the door so emotionally distraught I was instantly in a panic. He was crying, shaking and holding a washcloth to his mouth. I was frantic....what in the world was wrong with his mouth? How bad was he hurt? What happened?
Keeg pulled the washcloth away from his mouth, showing a small speck of blood. I was confused. He was soooo upset, was there another injury? Through choking sobs, he explained to me that, as I had requested, he had stayed with his 5 year old brother (who is also on the Autism Spectrum) in the bathroom while his little brother was in the bath. Keeg explained that they had been playing well and having fun. Then, Keeg didn't do something exactly the way his little brother wanted. His little brother threw a Hot Wheel car, hitting Keeg's lip. It left a small cut in his lip, and knocked one of the brackets on his new braces loose. I still couldn't understand all the heart wrenching sobs. I understood that it hurt, but Keeg's despair was so intense.
My impulse was to tell him to just calm down, that it wasn't that big of a deal, and it couldn't hurt that bad. But, my inpulses have been terribly wrong the last two years, and I've learned to stop and try to look at the situation through Autistic lenses.
With a heart wrenching cry, Keeg said, "Mom, I was playing with him and staying in there. I was being good! I didn't do something just the way he wanted, and he hurt me Mom! I never want to play with him again!"
And suddenly, I saw.
Keeg wasn't wrecked with sobs because he was in physical pain. He was wrecked with sobs because even though he'd done his best and done everything "right", his little brother had hurt him. He was heartbroken. He didn't understand what had happened, he had not anticipated the event that happened, and he felt crushed under the weight of not having full understanding.
As I looked at Keeg, I saw him through my Autistic lenses. I saw that, just as when he was younger, he needed me to hold him, comfort him, and tell him it would all be OK. I realized that, as he had grown taller then me, begin to shave, and entered his teenage years, I had thought to put behind those "childish ways". I had never seen him as clearly as I saw him today.
Keeg is struggling. The world doesn't make sense to him. He doesn't realize why children his age don't hang out with him. He doesn't understand why people walk away in the middle of conversations. He doesn't understand why everything can seem to be going along a logical path, and suddenly an unexpected twist or change occur. He feels a depth of emotions that most teens have already learned to leave behind in childhood and that adults usually never return to. He feels despair at the overwhelming feeling that he never really knows what is going on.
Keeg cried out in despair a couple of weeks ago and told me, "I don't want to have Asperger's!"
I am his mother. I love him more then I could have ever dreamed possible. Together, we'll find the beauty of Asperger's and how it completes him and makes our family whole. Together we'll brave the world that is little understood and doesn't make sense. I will be his interpreter. He will achieve independence and accomplish his greatest dreams.
And through it all, he will teach the world that "different" is more then OK.
Subscribe to:
Posts (Atom)