Friday, July 16th 2010

Well, I’m back home from Bermuda AND as much as I didn’t want to leave the island…the more I am home the happier I get by being home and reconnecting with my friends here. I didn’t really write much while I was gone. My days were filled with enjoying every bit of Bermuda that I could…that included working out, reading, writing in my journal, & exploring the island. It was absolutely perfect! Heaven I may add..

I would find myself leaving in the morning roughly around 9:30 AM Bermuda time and wouldn’t find myself back in the room (other than to shower and get ready for the evening) until 12-1 am. Then I found myself editing videos for the blog until 3 am…by that time…writing my thoughts was farthest from my noggin.

As you may have noticed from my videos…I had an amazing time! I met some great people, and got a chance to do many things I never did before.

Some of the firsts for me during this trip were:

• First time I ever flew in a 767 (one of those planes I have only seen in the movies..the ones that have 3 rows of seats)
• First time I have ever traveled to another country by myself
• First time rode in public transit (The bus system)
• First time I ate turkish delight.
• First time I snorkeled
• First time I ever saw salt water fish in the actual ocean.
• First time I drank a Swizzle
• First time I have ever been in a Lighthouse.
• First time I climbed to the top of a Lighthouse.
• First time I ate rum cake.
• First time I sat in a room with people from Canada, Bermuda, Dubai, United States, & other countries I forgot.
• First time I swam in the Atlantic Ocean
• First time I ever slid down a slide in the Atlantic Ocean.

As you can imagine…these are only a few firsts that immediately come to my mind that I experienced this week…and it was awesome!

I started this blog because I was called to write about my life raising my children and teaching children with special needs. As many can imagine there is so much that goes into raising my family…and it is very easy for me as a single working mother to get caught up in a lifestyle completely absorbed in dr. appts, social security, medicaid, therapies, & and many other entities that follow raising my children. Those who know me…know that I am dedicated to them. With that dedication worry & fear can easily set in. However, at the end of the day…when they are asleep and the house is quiet… I am simply a woman who is 34 years old, who has big hopes & dreams, who wants to be loved, who wants an ever lasting relationship with someone who adores me & I them and who wants to make a difference to somebody, anybody, or everybody. Doesn’t every woman want this?

Now that my children are getting older and that they get to go to their Dad’s house during a majority of the summer months…I have chosen this time to really explore who I am by doing all the things that were on hold for so long. I have been raising children more than half of my life (started at 16 years of age).

One may wonder after watching my videos what traveling or meeting the people I do has to do with raising three children with special needs. AND to those people…I say: “This blog that I write, isn’t about one particular disability, it isn’t about coping, this is a blog simply about living”. I have learned about living through my children. They have been my teachers. I caught myself having a few fearful moments during this trip…which at the time caused me think about passing on opportunities of venturing out on my own…and then I thought about Taylor…and how she doesn’t like to be left out of anything and she would be up for anything…and then thought about how Erin told me she wanted to be a ballerina when she grew up and I realized that I can’t let fear get in the way. I have gotta show them they can do anything. I never let one opportunity pass. Not one. AND I enjoyed every minute of it.

So, this is why I make the videos. My intention is that a parent of a child with special needs may come across my blog someday…and may find hope for his/her child’s future and him/herself’s future through reading or watching. This is my hope. I am the lucky one!

Until Next Time,

E

Tuesday, May 25th, 2010

On our 4th meeting with more than 4 hours sitting in a chair…just today. The IEP (Individualized Education Program) Team has finally come to an agreement in regards to Taylor’s education for the next year. Not all individuals at that meeting were excited or thrilled with my perseverence…however, overall I feel that for the first time in a long time I experienced what was a long time coming…a true IEP where the entire team involved had input and developed an “individualized education program” that what we all think will be best for Taylor and will assist with transitioning her into whats to come after High School.

I’m excited to say next year, Taylor will get to experience a year without a one on one Assistant (in order to provide her independence and more opportunities for self-advocacy skills), She will get to attend a Photography class to emphasize her love for photos, she will get more opportunities to be with her same age non-disabled peers, AND she will get a wide variety of opportunities to learn and develop more functional academic skills and be given a chance to implement them 3-4 times weekly throughout the community (Community Based Instruction), among many more changes that were made.

Wow! I didn’t realize how much the last two months of planning for this IEP has been on my heart and been bothering me so until the IEP was over. I feel so relieved that when I came home I began to feel physically ill. My tummy has been in knots. I am optimistic that I will feel like new in the morning…but for now I think I am going to celebrate with a coca-cola slurpee. (Yes, Ian (my trainer) a slurpee is not on the diet menu…AND, I am going to have one anyways!)

I’m not sure what the future will hold…only God knows that. However, I am excited for the next school year to come to see all the gains Taylor is going to make!

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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Wednesday, May 12th, 2010

As I was getting ready this morning it crossed my mind AGAIN that Taylor will be entering her last year of High School and Jorden & Erin will be entering their last year in middle school. Wow! It’s really happening…..they are growing up! If there ever was a time that my children should be filmed it should be the next year. I have so many questions about the future and feel that I will be entering a whole new territory. Next year, Taylor will become an adult and will be graduating from High School. This is why I often discuss her education more than the other two, since we are entering such an important milestone. Even the thought of this brings tears to my eyes. She is so small, and so immature, yet such an important presence in this World that I want to make sure that she is given the best possible chance to live a life full of joy, love, independence, and self-worth.

Her IEP (Individualized Education Program) is scheduled for next Tuesday. I really wish that the teachers who work with her could see the accomplishments that she has made, could feel the joy I have, could know the tough times, could know everything a parent who has a child with special needs goes through. If only I could give them special glasses to look through for a brief moment. I wouldn’t want them to have those glasses for too long…because I want them to have high expectations for her (even more than I do!!) Those special glasses would allow them to see past her drool, her awkward gait, her delay in cognition, and her crooked teeth AND then see the smile that lights up the room, her uncanny sense of humor, her friendly demeanor, and her gift to capture people behind a camera. They would see the gifts that God has given her and as her teacher they would focus on these gifts to teach her and to help guide her to be the person she was made to be. This might allow them to see how important their job is to me and my children. As a Special Education Teacher myself, I take my job really serious and know how blessed I am to be able to do it!

Tomorrow after work at 3:30 I have  a meeting with my advocate to review Taylor’s IEP to discuss where we believe Taylor’s education should be focused on within the next year. Then, early Friday morning, before work…I will be meeting Taylor’s Teacher that is her assigned case manager (she constructs the IEP) to go over with her what I would like to see in the IEP before the actual meeting on Tuesday.

Right now…I am feeling a lot of pressure and pray every day that I am doing the right things for my children and hope that God will provide me with the answers for their future.

Until Next Time,

E

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Sunday, April 25th 2010

Yesterday the kiddos went to the monthly event at Starlight Foundation. I was unable to go with them, because I had already planned on going to a Clothing Exchange Party at my friend Melody’s house. I love going to the Starlight Foundation events because every time I do, I meet another person that I believe is amazing. Did you know that there are many amazing people in this world that have amazing stories? If I had a wish, I wish I could travel around the country this summer while the kids are visiting their Dad and interview each person and tell there story. Hmmm….maybe I will just do that!

For now…meet John Michael Stuart. I think he is awesome!

He is always great to my kids and is always assisting others at the Starlight Events! He is a man who lives with Cerebral Palsy…and is an example of  the true meaning of perseverence! John wrote a book called Perfect Circles. I’m thinking heavily on starting The Little Life Book Club. If so, this will be the first read! Anyone interested?!

Until Next Time,

E

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