Wednesday, May 19th, 2010

Taylor got a new hand splint today. She was very excited and she asked to film a video for you. Here is Taylor explaining and showing what her the purpose is  behind her wearing it.

Until Next Time,

E

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Tuesday, May 18th 2010

Well, today was PART 3 of Taylor’s IEP. Taylor’s Teacher of Record scheduled the meeting in the afternoon this time to allow all of the team members to be in attendance (i.e: all related services (Occupational Therapists, Physical Therapist, Speech Therapist, Nurse, Transition Specialist), Special Ed Teacher, Gen Ed Teacher, School District Representative) …however, that means that I only had an hour to be able to meet…since it was during my lunch hour. I left my last school and darted over to Taylor’s High School and ran in that meeting as fast as I could. I had an Advocate attend with me…so I had someone there who also knew the mine and Taylor’s rights to assist me.

During these times is when I wish we had a meeting like this on film to help others understand how imperative these IEP meetings are for a child’s successful future. Developing an IEP is not something that should be rushed through. Especially this one! This is the IEP before Taylor turns 18, she will be a Senior in High School next year and currently there is no plan in place for what her future will be. Don’t they get it?! Other 17 year olds start making plans for their future at this time…why not my 17 year old? Regardless, of what I believe or anyone else believes Taylor is capable and a future is inevitable…time moves forward…we can’t stop that. It is just up to us to determine how great we believe Taylor’s can be…and I believe she is made for something great!!

Well, without going into every single detail of that hour (and there are a lot of details)  we only were able to cover a small portion of the actual IEP. I knew this going in..and had made it very clear. When I sat down, I communicated that I only had an hour today plus I had previously communicated this through email about the time constraint. When my time was up…I advised the team I had to leave. Due to me running out of time,  I had made it clear that I wanted to be present for the entire IEP.  The Special Ed Facilitator (he was currently leading the meeting) then raised his voice and said , “OK, well if you have to leave, then the rest of the team will finish the IEP and you can review it.”  What? Why would you have a meeting about my child when I’m not there? Why would someone want to plan for her future without one of the most important team member’s input??…Me!!! When I objected, and this is the critical piont…he  pushed  to ignore my stand and attempted to continue  the  meeting.  He started saying that legally it had to be done and they must finish. He completely ignored my request. This made me think…Does he care about Taylor’s life?  This is her life and we want to just skip right through it?

It was so bad that the other teachers started defending my position. Thank-you to those other team members!!! I’m sure that parents in my positon without the training would have caved in and lost their effort to be present. This is what concerns and angers me. Others can mess with me and my children…because God gave me the tools to fight for my children’s rights. I have those gifts, and I will use them. In the end…it will all work out…I will do my all to make sure of it. However, other parents weren’t given the knowledge in IEPs, Education, & Advocacy in order to do so. The IEP process can be so overwhelming for me and I have a Masters Degree to know all this stuff! Can you imagine how overwhelming it may be for others who aren’t familiar with the process? Think of how many parents may have been bullied by this same teacher? AND who is ultimately affected in the long run? The child! They are the ones who get left behind!!! I have got to find a way to make a difference with this. Not sure how to educate others…but I guess this is a start.

I made my stand and as a team we all agreed and rescheduled Taylor’s IEP (Part 4) for next Tuesday morning. I’ll keep you posted!

Until Next Time,

E

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Sunday, April 11th, 2010

Here are the results of our First Annual Shop-a-pa-looza! We would love your thoughts of the videos! Please comment by clicking on the above header. AND please become a member or our Happy Dance Group on Facebook! It’s where everyone shows of their own Happy Dance! Let’s make it a movement!

Until Next Time,

E

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Monday, April 5th, 2010

About a couple of months ago I was randomly searching YouTube on information about Cerebral Palsy. I found home videos from a couple with a son who has been diagnosed with Cerebral Palsy. Nate & Renee Charlan are the proud parents of Zack, who is 3. The Charlan’s have teamed up with a T.V production company, a web developer, & Exceptional Family Magazine to provide a weekly online T.V show that will provide various real life stories of families with children with special needs. What a great resource for families!! I invite you to check out the Exceptional Family website and become a member. Just imagine the families it will help!

Until Next Time,

E

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Monday, March 15th, 2010

Meet Jorden Little

Jorden is 12 years old. He is the twin brother to Erin. He was born on April 30, 1997.  The twins were originally supposed to be born on August 18^th.  They were both born at 24 weeks gestation, and Jorden weighed in at a whopping 1lb 15 oz. He was the first to be delivered by normal birth. The following day after birth, he had an ultra sound done on his brain to find that he experienced a bleed on his brain that was labeled as a grade III bleed. (1 being least severe to 4 being most severe). Jorden experienced many different challenges the first couple months of life such as difficulty breathing, jaundice, and also was diagnosed with ROP (retinopothy of prematurity in both of his eyes) He was on oxygen for nearly 1-1/2 months. The first couple of months in the Neonatal intensive care unit Jorden had a few different surgeries such as: a bilateral hernia removed, laser surgery on both of his eyes due to the ROP, and one of his main veins in his arm grew around his main I.V pick line which caused the Doctor’s to go in and remove the I.V line by surgery, which caused the entire vein to be removed. (I have been told that this is something that hardly ever happens). Jorden was in the NICU for nearly the first 2-½ months of his life. He was sent home using a heart and breathing monitor for the next 6 months of his life.

Around 5-6 months of age, Jorden developed acid reflux, which caused him to have difficulty eating or holding any food down. He would often projectile vomit after every feeding. This caused his bones to become demineralized, which then caused the bones to become brittle. At roughly 6 months of age, both of Jorden’s legs broke due to lack of nutrients. Due to being on oxygen at an early age, Jorden developed lung challenges and became asthmatic. Therefore, he continues to have frequent breathing treatments using the nebulizer or an inhaler.

Jorden has worn glasses since one and half years of age and has been under the care of a specialist for his vision. At age 8, Jorden’s retina in his left eye became detached which caused the loss of vision in that eye. At that time, his right eye required surgery to prevent retina detachment. At age 9, Jorden required another surgery on his right eye due to suspicion of the retina detaching. At age 12 (one month ago) he had a follow up surgery to remove a cataract in his left eye that was developed due the retina being re-attached.

Jorden began walking at age 1-1/2 years of age. He began talking about the same time, and was always extremely verbal. He had botox injections in his left hamstring due to walking on his toes. AND he continues to wear a night  brace in order to stretch his hamstring.

Jorden has received Physical Therapy, Occupational Therapy until he was about 7 years of age. He received Speech Therapy due to feeding/sensory issues until he was also 7. As similar to his sisters he received Early Intervention Services since birth and wore a DAFO (leg brace) on his left foot, due to toe walking. His left foot is where his cerebral palsy has been most prevelant. He has been fully integrated in the General Education curriculum for all of his life with limited and now requires no support.

Jorden is an amazing young man, who adores his family. He has a passion for God that is rare to find at such a young age. He loves video games, karate, computers, loves to listen to music, and loves to play the drums. Jorden, like the rest of his family loves being around others and loves being included. He is a delight and is a blessing to know!

Until Next Time,

E

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