Ten days ago was my last post. Just ten days ago. Today those ten days seem like years....
Colby had gone in for testing and we were making the very hard decision of pursuing this company that would cost us a fortune but made big promises or not. Ten days ago my life was about Avery's recovery, Colby's special needs, Rusty's 4th birthday, Sydney's growing need to be sassy, Shelby's babyhood, school, my Mom's upcoming petscan, PTA, kids sports and activities and moving. That's all changed now.
Tuesday I rode my kids to school on their bikes and just two hours later our lives changed. My Dad suffered a stroke. The last six days has been about all of the above AND taking care of him. Daily hospital visits that are now skilled nursing center visits, making medical decisions, caring for him and making the very challenging decision about his future...our future...our future with the added element of his care.
I truly believed when I had my kids younger that I wouldn't have the burden of caring for my children and my parents at the very same time. It didn't really work out that way did it?
How can I make decisions about my future when in the last ten days my future changed so much?
How can I give everything to everyone that needs me and not go completely insane?
When do I get to get back to the place where I feel my life goals and accomplishments and my actual life are equal again?
How did I get here?
Right now I just don"t know.
Hopefully ten days from now I will.
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Sunday, April 17, 2011
Thursday, April 7, 2011
Colby...
Recently my husband and I had to make the very challenging decision of whether or not we should retain Colby in kindergarten. This is not a light decision by any means. I read every study and research article I could find about retention. At the end of the day most believe it's the "does the child ever graduate school" question.
Raising a large family raises the spectrum of challenges. Avery is very bright, but lazy. Sydney is also bright but more importantly very hard working. Colby is very intelligent, he just has some pretty extreme learning disorders...most people can't differentiate, including "experts". If I just had Avery and Sydney things would be...easy. Colby throws in a whole lot of extra advocacy.
When Colby was 2 years old he didn't talk. I honestly thought nothing of this because he had two older siblings that always talked for him. When I took him to his yearly check up his pediatrician felt differently. They immediately sent him to a speech pathologist and he was instantly diagnosed with Speech Apraxia. There I was with a newborn baby, 2 older kids and a 2 year old with a pretty overwhelming future.
In giving Colby a speech disorder God also gave him the worlds biggest heart and the most ah inspiring determination. This child was first told he would never talk to talking all the time. We were told to use pec cards for communication, to teach him to sign, to even give him a permanent device so he could communicate with us. His pathologist never imagined a normal life for him in regards to speech. It was daunting.
Colby had years of private speech therapy, went to a preschool for kids with special needs, has been tested by everyone and their Mom and now has a fully developed IEP. He receives over 810 minutes of therapy and resource a month in school. To say these services came easy is just not the case. When you have a child with any special need you have to learn how to fight for them. I had to file many appeals to ensure he received his therapy. I had to demand he be tested and re tested, I even had him switch preschools and had them bring his speech to the new school. None of these were easy decisions and or choices but they were best for Colby so they had to be done.
When he started kindergarten I thought he would "catch up" on his learning. We focused so much on his speech all these years because we assumed that was all that he needed help with. When he entered kinder we discovered that Apraxia effects all learning. Thankfully he was blessed with THE MOST AMAZING teacher who joined me in my advocacy for Colby and pressured the "experts" to test him for everything. When you spend years feeling like the only advocate for your child and someone else finally joins in there's an overwhelming sense of gratitude that just cannot be described.
Apraxia is a very complex disorder. It usually develops in children with Autism but over the last several years they have found more non autistic children being diagnosed. To lightly sum up what Colby goes through imagine you hear everything normal you just can't repeat it the same. When he reads he can see the word cow but when he goes to say cow something else comes out, like cat. Can you imagine trying to say something and always struggling to get the correct sounds or words out? It's a daily struggle yet Colby makes it look so easy.
When we decided that Colby should move on to first grade it wasn't capricious. I am terrified he will become overwhelmed or feel bad about himself but I have also learned that Colby is very hard working and can surprise everyone, including me. He understands everything in his life and he would know he was held back just like he knows he has a speech disorder...he's a smart cookie.
In the end knowing if we made the right choice wont be determined for years but that's usually how all parenting is...doing the best and praying it was the right decision...
Raising a large family raises the spectrum of challenges. Avery is very bright, but lazy. Sydney is also bright but more importantly very hard working. Colby is very intelligent, he just has some pretty extreme learning disorders...most people can't differentiate, including "experts". If I just had Avery and Sydney things would be...easy. Colby throws in a whole lot of extra advocacy.
When Colby was 2 years old he didn't talk. I honestly thought nothing of this because he had two older siblings that always talked for him. When I took him to his yearly check up his pediatrician felt differently. They immediately sent him to a speech pathologist and he was instantly diagnosed with Speech Apraxia. There I was with a newborn baby, 2 older kids and a 2 year old with a pretty overwhelming future.
In giving Colby a speech disorder God also gave him the worlds biggest heart and the most ah inspiring determination. This child was first told he would never talk to talking all the time. We were told to use pec cards for communication, to teach him to sign, to even give him a permanent device so he could communicate with us. His pathologist never imagined a normal life for him in regards to speech. It was daunting.
Colby had years of private speech therapy, went to a preschool for kids with special needs, has been tested by everyone and their Mom and now has a fully developed IEP. He receives over 810 minutes of therapy and resource a month in school. To say these services came easy is just not the case. When you have a child with any special need you have to learn how to fight for them. I had to file many appeals to ensure he received his therapy. I had to demand he be tested and re tested, I even had him switch preschools and had them bring his speech to the new school. None of these were easy decisions and or choices but they were best for Colby so they had to be done.
When he started kindergarten I thought he would "catch up" on his learning. We focused so much on his speech all these years because we assumed that was all that he needed help with. When he entered kinder we discovered that Apraxia effects all learning. Thankfully he was blessed with THE MOST AMAZING teacher who joined me in my advocacy for Colby and pressured the "experts" to test him for everything. When you spend years feeling like the only advocate for your child and someone else finally joins in there's an overwhelming sense of gratitude that just cannot be described.
Apraxia is a very complex disorder. It usually develops in children with Autism but over the last several years they have found more non autistic children being diagnosed. To lightly sum up what Colby goes through imagine you hear everything normal you just can't repeat it the same. When he reads he can see the word cow but when he goes to say cow something else comes out, like cat. Can you imagine trying to say something and always struggling to get the correct sounds or words out? It's a daily struggle yet Colby makes it look so easy.
When we decided that Colby should move on to first grade it wasn't capricious. I am terrified he will become overwhelmed or feel bad about himself but I have also learned that Colby is very hard working and can surprise everyone, including me. He understands everything in his life and he would know he was held back just like he knows he has a speech disorder...he's a smart cookie.
In the end knowing if we made the right choice wont be determined for years but that's usually how all parenting is...doing the best and praying it was the right decision...
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