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Tuesday, January 31, 2012

Teacher, do you understand?

Do you understand I have trusted my children to you?
Do you understand that our children look to you for guidance?
Do you understand your words have amazing power?
Do you understand how many lives you touch?
Do you understand the hurt you caused?
Do you understand how your ignorance makes you look?
Do you understand how you made my son and probably others feel?
Do you understand you were wrong?
Do you understand my daughter and her community of people deserve respect?
Do you understand the pain and the challenges families like ours live with every day?
Do you understand?

Education Needed

Sometimes I am amazed at what my children teach me. They teach far more to me than any book or teacher ever has. The other day my son, Beau told me a comment his teacher said to his class. First of all, I want to set the stage. Beau is in eleventh grade at a public high school. The community we live in is considered above average in many ways. The houses, incomes and education levels of residents are all above national mean. The two local public high schools have been on the top 100 high schools in America list by US News & World Report several times. So in a community where standards are set high, I personally expect more. I expect more from the teachers in my children's schools and in the residents of the community. I know they are well educated to teach my children and I trust them to do their jobs well. Teachers in this community often excel expectations that I have. I believe a teacher has the responsibility to not only teach academics, but they also teach life skills and social graces. Teaching respect and tolerance of all people is my biggest goal for my children. Respect and tolerance sum up life to me. If you have the skill to know there is more behind a person than what you see, you learn to understand that not everything is as it appears. We live this every day. When Teale melts down in a store or rages in public, we can only hope the people we encounter understand that there is much more to her story. She is not always the raging person they see, she has depth and joy that do not show in those bad moments. This does not mean she should not be respected. I expect my children to understand that they are incredibly fortunate for many reasons. I teach my children this in both words and actions. There are children in our city, not fifteen miles away, who live in poverty. Some of these children have parents in jail and relatives who have died in street fights. I have volunteered in the city schools and had children tell me that their Dad was shot to death or their Mom is on drugs. The disparity between my community and communities just miles away is overwhelming. But, I have taught my children about these things and have exposed them so that they understand how fortunate they are. Ironically, in this community, my children are the less fortunate, we have had major times of struggle. We have financially been the less fortunate. My motto has been "We may be poor in money, but we are rich in love." Hearing myself say that, I am not sure I like it though. Am I teaching my kids that we also wish to keep up with the Joneses of our community? I hope not. Back to the story, with all I have shared being taken into consideration. This week my son, Beau, shared with me that one of his teachers said "You could pass last years regents exam, if you rode the short bus and wore a helmet." While you pick your jaw up off the floor, I will give you my reaction "ARE YOU KIDDING ME?" I was in complete disbelief! Beau is the sibling of a sister who rides a short bus and you know the teacher did not know this when she said it. BUT that does not mean it is excusable. If she knew, would she have said it? Does that even matter? No it does not, because it goes straight back to my personal core beliefs, respect and tolerance. Mark and I are disgusted and we will deal with this in some way with the supervisors of this teacher and with the teacher herself. I will push for disability awareness training for this teacher and I will let her know how hurtful her comment was. Beau taught me more by sharing this than he probably realizes. And I plan on having that teaching continue by helping to spread the word and raise awareness. What you say impacts how people see you and others. Respect and tolerance, it's actually kinda simple.

Friday, January 27, 2012

The Week Before Christmas, part 5

I found a place to hide out, where Teale couldn't see me. Some of the men from the fire department were in a doorway, so I used them as a "screen." They would ask me if they were in my way, but I would explain that they were helping me. Teale has vision loss from her brain damage, the right side of both her eyes are blind. This is not because her eyes don't work, but because her brain damage causes her to not process sight on the right sides. Most people don't get this about her, she presents well, doesn't use a cane and usually doesn't miss much. There are the times she walks into people or objects, sometimes she misses steps or level changes on the ground. In general Mark & I cue her well, it just becomes part of your everyday thinking to say "step, watch the pole, look up, look down." But I must admit I also use her vision loss to my advantage sometimes. I have positioned myself at events where I didn't want her to see me, on her right side. When this event was outside, I stayed on her right, but now that it moved in, there was no option for that. So knowing she is not expecting to see me here, I use people as screens. I can see her face, controlled anticipation as to what is next. Teale is obsessed with gifts and she thinks there may be one given to her today. The gifts are on stage and I'm sure this is driving Teale crazy, but she sits patiently with her class. I love and hate how she can do this. Mark and I rarely see her patience. She is so different with us, much more demanding and little patience, if any! The gifts will be distributed to the kids, but first there is singing, jokes told, speeches made, she sits quietly, I don't see her utter a word to anyone. At home Teale never stops talking, so her show of restraint also bothers me. How Mark and I have wanted to be flies on a wall of her educational settings these last four or five years especially. When she started shutting down at school, it was tough to believe. Our daughter not talking, all day? The thought was so absurd to us, to family and to our friends. People close to us who knew Teale literally doubted what we told them. We had family treat us like liars when we told them Teale doesn't talk in school anymore. There were years of this that we didn't even know about. We had hints of it from other kids who would tell us, but some of Teale's teachers chose not to share with us her silence. I also believe new to her teachers may have actually believed it was normal for Teale. She began the slow decline into silence in the third grade. It was the year Teale became aware of her differences. She stopped being proud of her classwork she brought home and started crumpling it up instead. She would throw it into the garbage, telling Mark and I not to look at it. It was heartbreaking to watch as she slowly lost all her self esteem. We saw other signs too, an active child, Teale had determination when it came to many athletics. Although she has cerebral palsy and her right side is weak, she never had let that slow her down. She only uses her left hand and arm, her right leg and foot are not as strong as her left. She walks with a gate that tells you something isn't quite right, but she is a fighter and has always had spunk! Teale has played many sports, learning how to adapt to her body, she is quite athletic. She would practice shooting baskets at our basketball hoop constantly, making the shot far more accurately than I ever did. But at some point we heard she no longer would participate in gym class. She would watch the typical kids, but would not show her abilities at any of the sports they played. As Teale started shutting down, Mark and I began rethinking integration. Maybe she needed to be with only children like her in order to feel good about her abilities. It was the beginning of the end, third grade killed Teale's self esteem and she slipped into a controlled silence at school only. It would take years before we would win the battle to get her into School of the Holy Childhood and a setting where we thought Teale would feel accepted. As I looked at her sitting there so silently, part of me was proud, she was so well behaved, but part of me just wanted her to be "typical." I remember assemblies as a seventh grader, my girlfriends and I would be whispering and passing notes. Sometimes I just want Teale to misbehave a little, as wrong as that may sound. I want her to talk when it is appropriate, but I also want her to show excitement by talking when it is not. How I wish she would participate in life more, show emotions to her peers and her teachers more. She is just so controlled, sitting there taking it in. I wondered what she is thinking? In this school, Mark and I are sure we will finally get our daughter back. We can finally hope to see her come out of this stubborn, controlled silence she has forced herself into. I have started to see little signs of Teale coming back to us. She has talked more in this school than in other settings over the last four years. She talks about friends at home. Teale is again proud of the work she brings home to show us, to both Mark and I this is a huge change for the better. To have her be proud gives her more reason to want to learn and do better at her work. I get such a kick out of her coming home, ripping something out of her backpack and  shoving it in my face with a proud smile. She is coming back to us. Last spring when the school principal at School of the Holy Childhood called to give us the news of Teale's acceptance she said "We are going to get your daughter back!" I remember the tears falling down my face as I stood  motionless in my kitchen, knowing she could not have offered me a greater gift. For four years we had watched Teale's decline, how I looked forward to seeing her blossom again. So as I watched Teale from afar, I looked for signs of her comfort in this setting. I was getting the opportunity to be that fly on the wall and although it wasn't perfect, I liked what I saw. Teale seemed comfortable, I felt the warmth and it felt safe. But the thought that dominated my head was "next year." I was sure that next year at this same event I would see my daughter, being my daughter. I was sure as I watched her that next year the principals prediction would come true, we would have Teale back!

Tuesday, January 24, 2012

Do You Understand

Do you understand my heart aches every time I see your frustration
Do you understand I cry myself to sleep when you are hurting
Do you understand my anger at the people who should of, could have and didn't
Do you understand the bruises you cause, just make me stronger
Do you understand how much I admire you
Do you understand that you have taught me far more than I have taught you
Do you understand I will always fight for you
Do you understand the depth of my love for you
Do you understand

The Week Before Christmas, part 4

The men and women in blue fill the hallways, greeting everyone. Their warmth and sincerity felt like a thick cloud in the air. Big smiles on so many faces and the sound of laughter booming all around me. Over and over again, Merry Christmas could be heard. I loved how it was ok to say that, after all it is a Catholic run, private school. To me it was one of the benefits of having Teale here, rules were not the same as they were in public schools, there was an actual Christmas tree in the foyer. To say Merry Christmas, to have a Santa wandering the hall, to be able to talk about Jesus and God, it all felt right to me. As the firefighters walked to a room assigned to them for taking off their outerwear, I see a Mom I have met at meetings and ask her what will happen next. The cafeteria/auditorium is set up with chairs facing the stage. As everyone floats around the hallways, I realize my camera has died. I debate with myself if I have time to run home and get my charger. Knowing that being without a camera would probably break my heart, I take the chance of missing something and go. In the car I call Mark, but my words are completely inadequate, the feelings are too difficult to describe. Besides, I can tell he is distracted, it was the day before Christmas break and I knew he was swamped. I hang up disappointed that I can't share this experience with him and that he has no clue what he is missing. I hope my pictures and videos will do the day justice. I hope that when he gets home I will be able to share what I have felt today. I run into our house, grabbing the charger and throwing on a little make up. I had not planned on seeing people when I left earlier that morning. I was going to hide in the background and then quietly slip away. Now that I am going to stay, I decide to spend a few minutes to try and look  better. Lack of sleep had been catching up to me and dark circles were dominating my face. I threw on some concealer and hope I didn't look as exhausted as I feel. I also check on Mark's Mom, who lives with us. She is declining in health and needs much care. I bring her drinks, food and make sure she takes her medicines. She also needs reminders about personal care, doctor appointments scheduled, medicines managed and much more. It was a big decision to take Mark's Mom in, but it makes Mark happy. He is grateful to me for caring for her and I know I will always feel like it was the right thing to do. Because it was December 23rd, Mark's sister was coming to get Mom for a visit with her family before Christmas. We would all get together next week sometime after all the craziness calmed. So, I made sure Mom was packed, that she had the most  necessary items and was getting ready before I headed back to Teale's school. I'm often balancing much and, in my opinion, I mostly do it well. My house isn't perfectly decorated or as clean as I would like, but I do balance much else. Mark and I are a happy couple, even with the stressful lifestyle we live. We make much effort to spend time together and still have dates and fun alone. We take good care of our multiply handicapped child, his declining Mom plus our two other children. I still volunteer, not as much as I would like, but enough to help me feel like I am giving back a little. Mark works a job that can be very stressful, but it also can be very flexible for our complicated family. We often have many doctor appointments between Teale and his Mom.  Also there are many educational meetings for Teale especially, but in general, for three kids. Some are important for Mark to be at and often his job is flexible and accommodates such needs. Unfortunately today was not a day they could be flexible, so I am heading back to capture it for him. As I pull back into the parking lot, I again feel the overwhelming excitement in me that we are really here. We are really part of this amazing place and Teale finally has a school that we all feel a part of. I open the door and tears fill my eyes as I watch all the good going on around me. One thought goes through my head, a statement the principal once said to me, "Welcome home."

Sunday, January 22, 2012

The Week Before Christmas, part 3

As I capture what I can on film, I wish Mark could be here with me. It's amazing to witness this event. This is one time I feel validated and filled with gratitude that Teale is in this placement. The faces on the kids light up as Santa, Mrs Clause, the firefighters and Rudolf walk through the crowd greeting them. Teale is shy, she won't be quick to show her excitement. Her sensory defensiveness will keep her at an arms length. While many children push their way to  shake hands or even hug, Teale will try to blend into the background. Sometimes it's like watching Teale fight an internal demon. She wants to be part of life, she wants to hug, touch, connect with others, but she just can not make herself do it. One of our big hopes is that as she gets more comfortable with who she is, this will change. Her self esteem was severely damaged in the many years of placements that were not a right fit for Teale. As I watch the kids, I can't help but hope that next year, Teale will also push her way to Santa. This year she seems content to watch from a few steps back and see her friends enjoy this. I can tell the firefighters are aware of some children being like Teale. They give time and space, taking cues from the kids. I so appreciate this in my life with Teale, pushing her never works. I appreciate the people we encounter in life who accept Teale as is. It is tough to deal with others feelings around how Teale is. She can get crabby at a moments notice, she can treat people we care about with total disregard. Teale is all about Teale, her feelings are what she displays and honestly, most of the time, no one else's matter. Don't get me wrong, she can show love and empathy too, but she is bluntly honest with how she feels. After greeting the children, the firefighters move toward me and I fight tears as they wish me a Merry Christmas. They will never know how hard we fought to get our daughter into this school or how much this means to me to witness. The tears are welled up in my eyes and I have a huge lump in my throat while I push out the words "Merry Christmas & thank you for coming." The sincerity of what I felt could not be transfered in those few words. I wanted to hug everyone of those brave souls. I wanted them to know the true gift of Christmas they were giving me in their coming to my daughters school. I was overcome with emotion, the outpouring of love, but also the respect. I could feel the respect these men and women had for our children. It is a tough place sometimes, to have people glimpse into your life, they may show compassion or it may come across as pity. Pity makes me sick, I don't need pity and neither does Teale. She needs respect that her journey is challenging, she needs support and of course, love. The men and women who came out to my daughters special school gave all those things. As everyone retreated to the inside, I rethink my day. I need to get some things done and had not planned on going to the event inside. Then I see the woman who had told me to come and she insists I need to see what happens inside. This is what life is, this is Christmas, not the errands on my mind, but this, the love and the caring I am witnessing. I follow the crowd into the school, wishing I tissues in my pocket.

Sunday, January 15, 2012

Before I Had You

Before I had you I believed parents of children with special needs had more control than they do.

Before I had you, I may have wondered why your weight was so high and why your parents were not teaching you healthy eating.
Before I had you, I may have wondered why your overbite was not being fixed by braces.
Before I had you, I may have wondered why you wore clothes that are much too big or much too small.
Before I had you, if I saw you do something impolite, I would have wondered why manners were not taught to you.
Before I had you, if I saw you with hair that needed washing, I would wonder what was so hard about bathing you?
Before I had you, I would have thought, if she were my kid, her teeth would get brushed, so they didn't get so discolored.
Before I had you, your teenage acne would have been controllable and you would not pick your face.
Before I had you, you would not rage in public and hit your own Mother, Father or sibling.
Before I had you, all children with special needs were simple and sweet.

Before I had you, I didn't understand.

I thought parents of children who had special needs just didn't care. I thought they hadn't taught. I thought they gave up too easily. I judged and I wondered why? I imagined you as my child, everything that bothered me fixed, because, after all it is just about my being in charge as the parent. Before I had you, I had control.

Thursday, January 5, 2012

Teale's Love of JB

It is hard to remember how it started, but I believe it was in school. She seemed to catch on like any typical preteen girl. Screaming at just the sight of him, watching Youtube videos constantly, singing along to "Baby, Baby..." We were thrilled to have her enjoying something very age appropriate and encouraged her in many ways. We helped her find videos, we gave her CD's of his music and we bought her different Justin Bieber items. She talked about him being her "boyfriend" and he became part of our everyday lives. I remember the first time I used Justin as encouragement for Teale. She needed to get on her PJ's, getting undressed and dressed is difficult for Teale because she only has use of one arm. There are parts of it she can do on her own, but like many parents, we have often fallen into the trap of helping her too much. I guess that night I was tired of doing everything and wanted to see if Teale could get her own PJ's on. Telling Teale "After you get ready for bed, I will put Justin on Youtube for you." she trotted off to her room. When she came out dressed in her PJ's not only was she glad she then would get to watch Youtube, but she was also very proud of her accomplishment!  I can hear her to this day "I'm going to tell Justin!" And so, that is how it began, JB became part of Teale's life and ours. His name would bring a smile, the sight of him a scream! Youtube videos would make her laugh and take her away to a fantasy world where she and Justin were friends. Teale would take her medicines easily, get dressed, brush her hair, brush her teeth, etc. because "Justin would be proud." I truly began to feel like he was part of our family, as he was talked about so often. Teale believes he is her boyfriend and will tell anyone so. One day in the grocery store, Teale stopped dead and whipped out her cell phone from her pocket. The cell did not have service, but being typical in some ways, Teale loved carrying it. She  looked at the cell in disgust and said "Oh, it's Justin Bieber AGAIN!" The woman near me heard Teale and couldn't contain her laughter either as Teale and I talked about Justin bugging her all the time. At her special school, Justin Bieber is part of her everyday schedule. If she does the activities asked of her, she gets a Bieber break! I can't begin to tell you how many times I have heard "One Less Lonely Girl or Baby." I can't begin to explain the countless hours Teale has lost herself with headphones on, as she swings in her favorite hammock listening to JB and singing along, when she thinks no one is listening. Teale has been alone much of her life, not literally, but she doesn't have any close friends her age. She hangs with us, her family and often watches as her big brother and little sister go off with friends. I'm sure Teale is lonely but Justin fills part of this gap for her, taking her away to a world where he is her friend. When the JB movie came out, Mark took Teale. I believe she saw it at least twice at the theater, loving the parts about when Justin was little the best. We have bought all the JB movies for home and there have been days that she will watch them incessantly, rewinding to her favorite parts. For her 13th Birthday a dear friend of our family bought Teale a full sized cut out of JB. Her excitement was contagious as we set up Justin in our home and he truly became part of our family. I have seen her move the JB cutout to be near her while she is watching him on Youtube. She has jokingly danced with JB and her cousins, laughing hysterically. Justin Bieber has brought Teale countless hours of joy and his music brings her peace. Teale may be severely developmentally delayed, but when it comes to Bieber Fever, she is much like any typical young teen girl!

Wednesday, January 4, 2012

Justin Bieber to meet Teale

Do you want to help Teale meet Justin Bieber, please write to Ellen at the link below!
We would LOVE for Ellen & Justin to visit School of the Holy Childhood. School of the Holy Childhood deserves recognition for all the amazing work they do providing a community for people with special needs!