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Saturday, October 22, 2016

Comfort

As the world gets more and more used to "our special kids" growing up in it, my dream is for comfort. It may not be a word you would immediately think of, but it is one I can see or not see when you interact with my Teale. I have joked much over the last few years about Teale being my "bar buddy." You see, my husband works for the state by day, but at night he is a musician. He can be seen  playing in several bands in our community. Music is his passion, but at this point in our life, it can't support our family. Mark has been able to balance a full time job & his music, which also helps to make ends meet. For years he was on hiatus from the music scene, life was too busy with work and family to pursue his passion. He still practiced his sax much & kept his chops, but didn't play as many gigs as he does now. When Mark started picking up more and more public gigs, I would go, getting sitters for the girls. It was my time, friends would meet me & it was a great break from the everyday. In my life, sitters aren't always easy to find. It takes a special person to be willing and able to be with Teale. She can be moody & explosive. Not "getting her" or reading her cues can create a situation that may be difficult to turn around. There are few people I trust to be alone with my "kids." One gig, when I couldn't get one of those brave souls, I decided to take Teale with me. It was a bar he had played much, there was food & I decided I would just buy Teale dinner. She could eat & hang with my friends & I, plus we'd get to see her Dad play. If it didn't go well, I could just leave. It was worth the try anyway, after all, what did I have to lose? Well, it's been over a year since I took that step & now Teale is my "bar buddy." If the gig is early enough & they serve food, Teale just comes with me. She loves the experience, my friends are all fabulous with her & I still get to see Mark perform. It's a win, win in many ways. I have always felt like every experience helps Teale to grow. Social experiences are especially important. Her learning to be in public at her Dad's band, has more lessons than I could express. She's learning restraint, not bugging her Dad while he's on stage. She's learning how to have give and take conversations with my friends. She's learned how to maneuver through crowds of people who don't know her "special needs." So many skills are taught by the experiences we "give" our kids. For Mark and I, we've always pushed to have Teale be a part of the community and not kept her isolated. It's risky and we've failed much, but the times it works are more important. Teale is able, just by living her challenges publicly, to teach compassion. Comfort is my goal, I want people of all walks of life to be comfortable with my severely developmentally delayed daughter. By taking her to events, where you generally would not be exposed to this population, we are teaching "comfort." Teale is the best "life teacher" I've had. I love that Mark & I have the same visions for her. I love that we have decided the rest of the world needs to get used to her being part of society. Many families isolate & protect their special needs family members from the world. I understand why, I've had many of those moments when someone has broken my heart by not caring or showing understanding, but without exposure, people don't get comfortable. So even though we are only one family, I think we can help educate, by just living in as typical way as possible. Teale will probably be my "bar buddy" for many years to come, here's hoping she teaches "comfort" to many. 

Thursday, October 13, 2016

Finding Light in the Dark

The tough times have somehow always strengthened Mark and my relationship. I've never understood the "key to our success." I just go with the Blessing that it is.
A few weeks ago I struggled with illness, but I'm stubborn and a bit pigheaded too. I hate to be controlled by circumstances and often won't give in to such. Waking up, I knew immediately I was in trouble. The room was spinning and I was nauseous. No, I had not had "too much fun" the night before. Mark and I had been out on an unusual night date with another couple, but two glasses of wine in a four hour period should not make me spin! Anyway, it was quickly apparent I was in Vertigo and needed help ASAP. The vomiting was violent and I couldn't get control of my emotions on top of it. So much pain and confusion ran through me. The spinning was fast, like being on a small carousal going in double time. Mark called my PCP who directed us to urgent care. The thought of getting in a car was far too much for me though, so I refused, instead asking Mark for a nausea medicine I take when I'm in migraines. That wasn't kicking in though and the vomiting was just too much. So I finally agreed to let Mark help me to get dressed to go to Urgent Care. The three of us went, with no care for Teale, it was the best solution. As we drove the nausea increased and I sobbed, poor Teale couldn't stand seeing me like that and was begging her Dad to do something for me. Moments like that, when looking back, give me much pride. Teale is compassionate and has learned to care outside herself. This is a skill we never knew if she would be capable of and it still blows me away every time she displays such compassion.
By the time we hit Urgent Care the medicine had kicked in and I was doing better. They really didn't help me, but luckily I had inadvertently helped myself a lot. The nausea medicine I had taken was in the same class of medicines they prescribe for Vertigo. They did give me a shot for pain and another for nausea, saying I should go to the hospital for an MRI. I refused, just wanting to go home. I slept off the afternoon and woke Monday, not a hundred percent, but better. Pushing through and starting my week normally, I had much to accomplish. By afternoon I was struggling again, but both Tuesday and Wednesday I would push through. I had much gardening work to accomplish for friends and deadlines to meet. I'm not one who handles disappointing others well, so I got what I wanted to get done, done. Unfortunately, I also paid a price for it. My body was revolting and the dizziness and headache were back. Thursday morning I couldn't drive Teale to her nephrology appointment and Mark had to take the day off. He was done watching me struggle and vowed to get to the bottom of it. Mark is my hero, when things aren't right, this gentle giant will move mountains for me. He took Teale to her appointment and arraigned a doctor appointment for me. My girlfriend was my chauffeur until he could get to me. The doctor diagnosed vertigo with a migraine. She said the vertigo had either brought on a migraine or it actually was part of a migraine? She also concluded I was having a bad reaction to the medication that commonly controls vertigo and I had been taking all week per Urgent Care's instruction. Just to be sure, my dr ordered blood work and an MRI with and without contrast. She gave me a script for Valium to relax me and help me sleep, plus set me up with a PT to have The Eply Maneuver performed on me. The mystery would get solved, come hell or high water. Mark would take the next day off to get me to appointments and care for me. He would take on the kids, the house and all that that entails, while I healed. He would get further and further behind at his job, but tell me it didn't matter and that I was his priority. This is where we shine. We care for each other and get each other through every glitch life throws us.
I would come out of my illness with knowledge and understanding. I would know nothing serious was wrong with my health and how to deal, if there was a next time. It was just a glitch, a moment in our life together as partners.
Another chance to strengthen us for the next challenge and so on and so forth. Blessings are easy to see in the light, but when you discover the Blessings in the darkness, your whole world brightens. 

If Only

If only you could see yourself through my eyes
You would see, strength, courage, intelligence
If you could see inside my heart,
You would know love, compassion, understanding
If you could see the future
You would know this moment will pass
If you knew your own power
You would be amazed by what it can accomplish
If you saw what others see
You would see beauty, talent, depth
You are the one who controls your destiny
You are capable of all you want
You just need to want it


Saturday, October 1, 2016

Sharing....

A week ago I was asked to share some of our story, as a family, raising a daughter with Special Needs. It was very difficult to condense all I would want to share with this class of students at a local private college. The class was small and therefore a very intimate setting. I sat in front and just told highlights of life with our daughter, Teale, the good, the bad and the very ugly. There was much I missed and or skipped over, because, as it was, I went far over the time allotted. The "kids" got an earful that night and my hope is that they learned much about how families like mine really live. Our challenges are many and often, they are constant. 
I am sharing their reflections to help me to remember:

                We can't be ashamed to tell our stories,     they could be the key to someone else's success.









I've waited a few days to post on the blog because after class I was left speechless. I was blown away at Ellie's compassion, and her resilience to make sure Teale has everything she needs and is happy. When she spoke of her family and everything they have been through, it gives me so much hope. The strength this woman has, and her will to never give up is absolutely inspiring. I checked out her blog "We Are God's Entertainment" where I read some more stories about their family and I'm still struggling to explain how amazing and how genuine this family must be. 
   I have not personally seen a severe seizure take place, however my older brother has had his share of rages and outbursts, and I have felt the gaze of people looking at our family when we are in public, but as Ellie said quite well, it is almost always overshadowed with kindness and support. After hearing some statistics of parents with special needs, I'm so glad that there are families that do not follow them, never knowing this statistic I am also grateful that my own family is still together and happy, and now learning of more and more families that are the same, I'm not quite sure how to put it but it truly is incredible the bonds people can form and maintain despite the challenges having a special needs child may bring.
  I have so much respect for Ellie and her family, and hearing about their trouble with some school systems really encourages me to do everything I can to help students with particular needs, because each student deserves the best efforts from their teachers, and letting them down just doesn't seem like an option. 
Again, I am so grateful for have the chance to listen to Ellie, and even after trying to type this out and put my thoughts into words, there's still a part of me that feels like I can't quite capture it. 




Listening to Ellie Bradley share her experiences with us was certainly powerful and moving. Through the presentation I went through a whirlwind of emotions, and after class I really had to sit down and let my mind process everything. Something I found particularly powerful was that we were told the story starting before Teale was born and everything Ellie went through up to the present. A really emotional part for me was when Ellie was talking about having to train her kids go to a safe room if things ever got out of hand. It is no doubt that having a child who has special needs is a lot of work, but this example told by Ellie really illuminated just how crazy things were. And for her children to have to go through that as well must be extremely difficult. I checked out her blog, “We Are God’s Entertainment” and I really love reading her posts. By the time class ended I really just wanted to keep hearing about her experiences, and now I can read them! I find writing this blog really challenging, I just feel like my words are not evocative enough to do Ellie’s presentation/this topic justice, even so Ellie’s presentation was so moving and really eye opening for me about just how extreme the lives of the parents/caretakers of children with special needs can be.




Hearing what Ellie had to say was pretty earth-shattering and eye-opening. We all know that these issues go on in our world, whether it be learning disabilities, mental disabilities, and physical disabilities. But when we hear personal stories from someone who has been extremely affected by such things, it really grabs your attention. I think I cried once! It was when she was talking about her son, Beau, and how he stepped up to the plate to advocate for his sister, which ultimately changed things in their lives drastically. Her words really stuck with me, and made me feel for all the crazy things that she has had to endure in the past seventeen years. When she was talking, I made a lot of connections in my mind of her and Debra Chwast, Seth's mom. They are similar in the way they advocate and care so deeply for their child. Overall, I am very glad we got to hear from Ellie, and I wish we had more time to listen to her!





I am just loving this class! the speaker last night was amazing, I immediately wanted to be apart of their life (in a professional way). I have such a big passion for special education and the arts. I think that is why I felt so passionate about her story as well. What really stuck with me was how strong of a woman Ellie was and is. My day at BOCES (6hrs) is a very long and stressful day, so I can understand at least some of her exhaustion. She spoke about her daughter and her life with such power- I loved it. She did admit how hard time could be, but never gave up. Her and her family stuck together and did everything they could to help each other out- you really don't hear that too often. I was also blown away by the school district giving them such a hard time about their daughter leaving. Schools, teachers, and principles are in that profession for a reason.. to help students. It took her 16 year old brother to break down in front of adults for them to listen, I cannot believe that. I hope I am never apart of such a situation, as a teacher I would have fought with them and their daughter. Ellie and her family are truly special, I appreciate her coming in and tell us her story- I don't think she knows how touching and inspirational it was. I honestly think that she should write a book about her experience or even go around being a speaker, she could help many people and families! 





I found our speaker tonight to be incredibly moving and inspiring.  My mom has always worked with students with disabilities, from minor, to extremely severe.  So I have been around kids with intense needs before, but that hasn't necessarily made me comfortable with how to act in scary situations when medical needs arise.  I was helping out at a Christmas party once, at my mom's school, and a girl started having a seizure, and I was quite young, but I remember feeling very scared and helpless because I didn't know what to do, even though trained people were there to help.  I have often wondered since then what I would do if I was the parent of a child with these kinds of needs.  The panic I felt would never equal that if I was the mother, or sister, of someone going through that kind of trauma.  However, after hearing Ellie speak, I feel incredibly moved and inspired.  She exhibited such strength that I was in awe of her ability to care for herself and her family.  I was stunned that doctors pushed her to have an abortion, possibly because of my personal beliefs, and have so much respect for her holding her ground from that point, on to every time she had to advocate for herself, and her family.  She truly had to fight to provide the best possible resources for her daughter, which was heartbreaking but inspirational at once.
I also found hearing about her family life to be incredibly comforting.  It gave me a glimpse into what it's really like to have an intimate relationship with a person who has special needs.  I was so grateful to have heard her share what goes on behind closed doors, so candidly.  The team her and her husband make gave me so much hope, after hearing the statistics on how these situations can affect relationships.  It was such a testament to their love and resilience.  I also loved to hear what it was like for Teal's siblings.  The two perspectives were so raw and genuine, that I felt truly moved by each of them.  I am trying to imagine myself in their shoes, and have a deep respect for what they each must feel.  





Overall, I am so grateful to have heard her story both as a future educator, and as a human being.  I feel better equipped to deal with my own insecurities about interacting with people different than myself, and with my ability to provide for such students in my classroom.  I never want to be the teacher to let a student and her family down, as Ellie experienced.  I feel more determined and capable as a result of her talking with us, and am honored to have heard her.