Monthly Archive: September 2016

Losing a Loved One

This evening’s blog is a bit off topic as it is not about CB but rather about my dealings with the loss of my grammy.  My grammy passed away last week and I realized I am still heavily mourning her loss of life. Just about anytime someone asks me about her, tears roll down my cheeks. Or someone can talk about something else sad to them and those same tears form and roll steadily down my face. As much as I would love to be that person that is the most empathetic person you know, that is not normally me. I try, I do, but generally tears do not flow that easily with me. Don’t get me wrong, when my hormones are fluctuating during those specific times of the month, I can cry over anything. (I am still waiting for my hormones to normalize a bit more. HB stopped nursing earlier this year and my hormones are still trying to figure out how to act appropriately.)

My grammy and granddaddy were my closest neighbors growing up and were a huge part of my childhood. My grandaddy passed away 8 years ago. My grammy lived on and remained in her home. She has been on hospice for the past 3 years (and the Dr told my mom she wouldn’t last one month after they put her on hospice) so I have had time to prepare for her passing. Just under a week prior to her death, a health situation occurred that caused her to go downhill quickly and I got the chance to see her and tell her goodbye before she lost recognition of those around her. I got the chance to have “closure”. Even with that “closure”, I am still mourning our lost connection, her symbolic role in the family, the heartache my mom and aunts are enduring, and the loss of one more of my dear grandparents.  (more…)

Educational Desires for CB

Olem and I are in the throes of figuring out whether we relocate for better schools, try out our local public school, consider one of the many charters in the area, or consider a private school for next year. I would love a crystal ball and to be able to foresee what future would be best for CB. Ideally, we want HB to attend the same school so he can be there to help out CB if he needs it and vice versa. With all the talk about how our state is failing kids with special needs and underprivileged kids, it makes it even harder to continue to invest in this state. We think about how nice it would be to live in a state that understands the impact and importance of investing in our children, including those with special needs and those with less means. Why are our representatives so short-sighted and only worried about the costs of today? I mean, how can a representative with special needs represent this population in such a negative way and really feel that limiting and in some cases removing supports within the school system and within the medical system, including cutting funding for children with special needs on medicaid, make any sense for the state? Additionally, we live in a school district where a huge chunk of our taxes are reallocated to schools outside our school district and our school district representatives are not committed to investing in children with special needs either. Where does this leave us?

Olem and I got in an argument last night over whether it really makes sense to stay in our city and our state. He argues that another state may better suite our son’s needs, our political views and our values. And possibly, we could get all of this and pay a lower cost of living. It would be a huge trade-off though. We have a good support system here – friends in town, family within a few hours, moms’ groups, good, healthy food, restaurants that cater to diet restrictions, easy access to medical resources, lots of therapy options, different schools and types of schools, good weather, like-minded people around us, good neighborhoods, the beach within a few hours, close access to camping and good hiking, good weather, low crime, lots of job opportunities, good town culture.

I think it is pretty easy to tell that I want to stay. I just can’t think of another place I would prefer to be. At the moment, I think we can get all we need in this area. As I started off saying, before my big train-of-thought detour, we are trying to decide whether we need to move to a different school district. If we move, we will be further away from everything, have to travel further to schools, and will have less access to a variety of schools. Well, at least all of this is true for the primary neighborhood/school district we are considering. We also will potentially be paying more for our home and have less finances to consider alternatives other than public school. I guess one big question is whether we feel public school, even one that provides the best special education resources in the area, is the best fit for CB, at least for the next couple of years.

What I like about the thought of a good public school with proper special education resources

  • CB will be included in a classroom with typically developing peers
  • His education will be provided for by our taxes
  • The team has training with how to handle behavior disruptions within the classroom
  • CB will get the same education as other typically developing peers
  • The school has to provide accommodations and differentiated learning
  • Having CB in the classroom will be beneficial to him and his peers
  • The material can be modified if CB needs it
  • My neighbors’ children will attend the same school
  • CB will attend public school like Olem and I did

What I don’t like about the thought of a good public school with proper special education resources

  • There will be standardized state-mandated testing and the anxiety/pressure that comes from it – The schools in our area put a lot of focus on it, unlike when I was a child
    • Although having a child with special needs means my child can take a different version or potentially opt out
  • There will be regular homework in elementary school
    • Although I may be able to get it reduced
  • The differentiated learning and accommodations have to fit within the school’s framework – There isn’t typically too much differentiation they can do.
    • A good, well-trained, knowledgable school should be able to more flexible than others.
  • The school may push to put CB in a contained classroom for part/all of the time over the years
    • As the parent, I have the right to push-back. The burden of proof that the contained classroom would be the least-restrictive environment would be on them.
  • CB will get frustrated often due to the inflexible schedule/difficulty of the work/typical expectations if the teacher/assistants are not well-trained, motivated, flexible, creative and understanding
    • A good school should be able to provide these kinds of teachers.

So the continual weight of it all will continue. I am a person that likes to plan and not-knowing right now is quite frustrating and a bit overwhelming.

Nutrition, Supplements and Therapy Update

Here is a quick summary of CB’s supplements, therapies, schooling and diet.

Supplements

  • Morning
    • Vitamin D3 – 1 drop (Franklin & Friends – 400 IU)
    • Multivitamin – 2 chewables (Garden of Life Vitamin Code Kids Chewable Whole Food Multivitamin)
    • L-Carnitine – 1 capsule (Now L-Carnitine Fitness Support 500mg)
  • Evening (Before Bed)
    • Probiotic – 1 capsule (RenewLife 15 billion)
    • Fish Oil – 1 teaspoon (Nordic Naturals Omega 3 1600)
    • Vitamin C – 2 chewables (Nature’s Plus Animal Parade Vitamin C Natural Orange Flavor) – Periodically 2-4x a week

Therapies

  • Speech – 4x a week (2 private therapists and 1 therapist through proportionate share)
  • Occupational – 1x a week
  • Physical – 1x a week
  • Extra-curriculars
    • Piano Lessons – 1 x a week (to improve fine motor and motor planning)

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