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Saturday, April 30, 2011

Jealous of "Normal Lives"

Some days I am completely jealous of normal lives. You probably know what I mean, but to clarify; I mean those families who have kids who sleep through the night most of the time after infancy,  I mean those families with kids who only occasionally lose control, not daily or often multiple times daily.
The unpredictable sure can get to me if it's been happening too much. Today our jumping through hoops seemed endless. This post is completely contrary to "the grass isn't greener," I posted just days ago. I am human though, so today I am feeling fickle and jealous! Today I want your life, well not really, because some of you who read this, I'm sure live more challenging lives than mine. I just hate, hate, hate mental illness today! It started yesterday, early. Teale woke at 4:30 AM and refused to go back to bed. Then getting her ready for school was one challenge after another. She didn't want to get dressed. She then wouldn't take her several pills and threw them across the floor on me. I found most of them, replaced what I couldn't find and shoved them in her mouth. She then spit them at me, fun hu? After that my threat was "take the pills or wear the water," it worked. It worked because I have followed through in the past and she knows I will. Mean, maybe even abusive to some of you, but at least 2 times a day Teale has to take 10 plus pills and often it is not easy. She NEEDS the medicine, she is diagnosed with bi polar disease, has gastric reflux, terrible constipation and a huge seizure disorder to start with. She has to have medication to keep all these things in control, so no matter what, we will get the pills in her. Anyway the morning progressed with getting her shoe and fracture boot on. She broke her good leg a few weeks ago, too long a story, but you do need to know she is in a fracture boot right now. I then walked away to get dressed myself so I could take her out to the bus. I stop midway down the hall to my room, zip, zip of the velcro on the boot echos through the house and her screaming "I'm not going to school today!" I think quickly about this, knowing I need her to go to school, I need the break! So I offer a trip to the grocery store, after she gets home from school, only if she goes to school! She thinks about it and says "Only one school today, then home?" I answer yes and the deal is sealed. I give up on getting dressed and throw a coat over my PJ's, heck the bus driver has seen me in PJ's before! Teale gets on the bus and is off. What will the other end of the day be, when will I fit in the promised trip to the grocery store? Mark wasn't going to be home at night, so I would have to do "it all" by myself. I would cook dinner, clean up, go to the store and then get them ready for bed after being up since 4:30AM, this seemed daunting, but single parents do it, right? It basically went fine, so I won't complain. Anyway yesterday morning was tough, but today was worse. She had a fit in Wegmans that was so rapid and escalated so fast that my husband left his shopping cart filled with groceries and luckily got out quickly with Teale. I went back to the store and they had saved our cart so I didn't have to start all over. I finish getting what was needed and then go home to a fried husband. Mark was exhausted from the emotional stress. Teale has another fit over some misunderstanding just an hour or so later, screaming, threatening, we somehow get through that one too. At this point we knew she was acting too unpredictable to do anything even slightly risky. We cancelled plans to go see my nephew play his last college lacrosse game an hour away and we stay close to home. Teale wasn't done, one more emotional roller coaster ride would be taken, we try to reason and work through it but have to use an emergency medication. Also I offer a drive to calm her. She listened to the same cd over and over again as we drive aimlessly and I think about the wasted time and gas. I then missed a surprise Birthday party because it was obvious that today my life was all about my daughter. Today all we could accomplish was trying to keep her safe and as happy as possible. I missed the game, I missed the party, basically I feel like I missed the beautiful sunny day. That is why right now, in this moment, I wish I had a "Normal Life!"

Thursday, April 28, 2011

Your Lives?

It's funny how blogging works. I share my most intimate thoughts with you, opening up about my family and my feelings. But besides the people who write comments or let me know they follow my blog, I have no clue who you are. So, I put a poll on my sidebar which will give me a small window into who you are. There may be an answer you would like added, just let me know & I will try to accommodate it. Also, just so you know, you may pick several answers if more than one that fits. Thanks for sharing a bit of your life with me!!!

Wednesday, April 27, 2011

Grass Isn't Greener

I'm a firm believer in the grass isn't greener on the other side of the fence. I live with a lot of stress and challenges, but I always try to remember, everyone has stress and challenges. The guy with the new car, the woman with the perfect job, the family with my ideal children, many things make me want. I want more peace in my family, I want Teale to be happy and well adjusted, I want us to be more financially secure, I want more time together, I want to go on vacations with Mark, Beau and Gwenn, I want my house clean and organized always. One of Teale's favorite songs from High School Musical comes to mind: "I Want It All!" The list is endless, but when I start thinking about the "what ifs" in my crazy life, my mind always wanders to the biggest "what if," Mark. What if I had never met Mark, where would I be today? What if I had married a jerk or a cheater or a non caring or absent husband and father? What if Mark and I were nasty to each other when the stress got to us? What if the raising a child with severe special needs had torn us apart. The stats are high for break ups in this country and they are even higher in my "group." Marriages, who have special needs children, break up 95% of the time! We were told this many years ago and found it staggering. Some couples may have taken that information and said, well we are destined then to not make it and slowly they may have subconsciously given up. Mark and I took that information and became stronger! We are both pretty stubborn, so telling us we are going to fail, made us say, "no way, not us, we will be part of the 5% that makes it!" Mark is my rock, my best friend, the man I can count on every moment of every day. He is understanding, kind, empathetic and in general the kind of person everyone should be. He cares about my happiness and shares that with me in actions and words, often. Whenever I have had even the slightest thought that he has purposely hurt me, I have needed to step back and look carefully at the situation. I actually doubt he has ever purposely hurt me. Sure, we  have both done or said stupid things, but in almost 22 years of marriage, who wouldn't slip up once in a while? The grass seems greener, at my age especially, for many couples though. I see this as the stage of life where marriages either plug through or finally call it quits. It is tough to watch, it rattles me to the core when someone close to us breaks up. I become really insecure and needy, wanting Mark to reassure me often that he still loves me. After all I am the child of such a break up. My Dad had the classic mid life crisis, found a younger woman and left my Mom for her. I still, even with who I am married to, Mr Loyal, don't completely trust men. I fear that Mark may someday wake up and say why am I with this biotch? After all, I do not claim to be as nice as Mark is! The running joke in my family is that if we broke up, my family would keep Mark. He is way more patient, kind and forgiving than I will ever be. He will put up with my not being pleasant with complete grace, maybe because he knows I always come around. I am often apologizing for my behavior, I realize that I often take out my frustrations on Mark, maybe because he takes it so well? It is something I work on a lot. I am trying to voice what it is that is really bothering me instead of internalizing it and having it come out in non productive ways. I believe I have gotten much better at this over the years, but occasionally I still slip up and fall into my old habit of just being mad and no one knows why. I was out with a girlfriend last night who has separated from her husband. We had dinner together and as we sat there I scanned the bar, not one attractive single man to be found. There were many men, many without dates or rings, but the pickings seemed slim. I asked my girlfriend what it is like out there in the single world. Her response did not surprise me, "Not good," was all she said. I knew that in my heart, I knew it would never be a scene I would want to be a part of again. So back to my biggest question, what if I had never met Mark? I don't know the answer, but pondering it somehow keeps the grass greener inside my fence!

Sunday, April 24, 2011

Happy Easter?

Sadly holidays are very difficult for my "special" daughter, Teale. The excitement is high and the expectations are higher. We never seem to be able to match whatever is in her head for holidays. Therefore  often, holidays fail with our family. Mark or I have left more family celebrations with Teale than we have stayed at. Usually the deal is, if it is not working for Teale, I leave with her at his family functions, he leaves at my family functions. I have literally left my plate on the table and walked out with hardly a goodbye. Coming home to a quiet house usually helps calm her. She is often overwhelmed in crowds, so we try, but always have a back up plan, just in case. Today I am grateful to have no plans. Most families would find this sad, no big dinner, no guests coming, no place to go? I find it very freeing for our family. It means we can go with the flow of the day and not live up to anyones expectations. I do recognize the losses also, not doing something traditional makes today feel like any other day. We lose and we win with such a day. We often try to do traditional celebrations, we often have the big dinners, but this Easter we just felt worn. Teale has been off much of the week, not sleeping well and her moods have been tough to keep even. Today we will spend with just our "five family." My Mother in law will have the traditional Easter, church with one son and dinner with another. There will be no pressure here to have the house clean, the table set pretty, the children well behaved. We will just be us, eating and doing whatever we want. Hopefully, with any luck we will also get some peace together. Please pray for people everywhere who are struggling with mental illness like my sweet Teale.  Happy Easter everyone, may you feel loved and blessed!

Wednesday, April 20, 2011

Siblings of Special kids

I often wonder what it is like for our other two kids, you know, our typical children. We have a son, Beau who is 15 and a daughter, Gwenn who is eight, who are typically developing children or as also classified in my world, neuro typical. Our "special" daughter, Teale is 12 years old. The birth order of special families has always been of interest to me. I often wonder how our having a family with 1 special child has changed the typical dynamics of  birth order. My youngest may be the youngest chronologically, but she has developed above her sister in many areas. My son had both parents for awhile before the complications of his sisters life were thrown into his life. Beau, like Mark and I had already loved Teale for years before her erratic behaviors started. Gwenn on the other hand, only knew Teale as this explosive big sister who sometimes she needed to fear. What does living with a child, whether it's your daughter or your sister do to your psyche? We were all diagnosed post traumatic stress disorder by Teale's psychiatrist years ago. I would sometimes bring Beau and Gwenn to Teale's psychiatrist appointments so he could see the dynamics of our lives first hand. Teale's sudden rages, mostly directed at intimate family members where hardly ever seen by professionals, so I took this opportunity to get input. We sat in the doctor's office as he watched all of us flinch with Teale near us, wondering if she would strike out at us without warning. We were constantly on our guard, always aware of her state of mind and trying to stay one step ahead of her anger. Being diagnosed post traumatic stress disorder was a sad reality, I was affected negatively by living with Teale. I was also not doing as good a job as I had hoped I was at protecting my other two children. I remember feeling like I had failed Beau and Gwenn after that appointment. I had tried so hard to always look at the good Teale brought us, had I not seen the stress? Another example of her affects I see every year when I pull out the Christmas card pictures from years past. I have this professional picture we had taken of Beau and Teale when she was just turning 2 years old that always brings back memories I wish I could forget. Her rages were not ruling our lives at that time yet, so we were not as vigilant as we are now. Anyway, it is a sweet picture and the last one in that sitting before Teale hit Beau and pulled his hair hard. He was hurt, but the pain wasn't what hurt as much as Beau's feelings. He was always kind to Teale, why would she deliberately hurt him? I believe that photo session was kinda the beginning of many years of pain. Teale became more unpredictable as she aged, her frustration was greater and she angered quickly. By the time we had made the decision to have a third child everyone around us thought we were crazy, our hands were already very full! For years after Gwenn's birth we protected her at all cost, Teale was so unpredictable, there really was no telling whether she might seriously injure Gwenn. It was a very stressful time in our lives, trying to keep our daughter safe from her big sister. This is where my wondering about birth order comes in. Gwenn seems like a classic first born child, not the baby. She is a perfectionist in many ways. She will refuse to try something if she doesn't think she will be good at it. Does having an older sibling with special needs make the birth order change? Does the order in which the child with special needs falls in the family determine ones tolerance to the situation? My son is definitely easier going with Teale, he is not frazzled by her behavior or seemingly frustrated by her unpredictable nature. Gwenn was the target for years, so her relationship with Teale was very difficult. At this point Gwenn and Teale are becoming friends though, they are able to share activities and enjoy each other. Sure there were times I questioned Mark and my decision to have a third child, but it was made with much thought for all of us. We wanted Beau to have a sibling he could have a typical relationship with. We wanted Teale to have support of more than one sibling. We know we won't always be here for Teale and she will need others to look out for her. We didn't want this responsibility to be solely on Beau. I had always wanted four children before having Teale, so having three was a compromise. I knew it was going to be tough, but long term it seemed right for all of us. Unfortunately, our family life is often at the mercy of Teale's moods. We can plan, but it may not work out or the plan may need tweaking. Often the best way to guarantee success is to divide and conquer. My husband or I take Beau  and Gwenn, the other spouse has Teale. We have tried very hard to keep our lives somewhat normal for our typical children, so they do not resent Teale for things we can not do as a family. Vacations are the biggest loss I personally feel. How I would love to jump on a plane and go somewhere warm and sunny during our grey, cold Rochester winters. We flew with Teale when she was young, but it was very difficult.  Flying with her now seems impossible. Even when she was small and somewhat controllable physically it was awful. Driving long distances is also challenging with Teale, abstract thinking mostly escapes her, so explaining that 10 hours will get us to warmth and vacation just goes straight over her head. Teale's siblings, Mark and I have all given up things we thought our family would experience. Mark and I were campers before having Teale, but after a horrid camping experience when she was young, the dream of camping with our family was put on hold. We have recently started to explore the idea of vacations and camping again, but with anything we do as a family there are risks that need to strongly be considered. So I guess I have gotten off track, this is about siblings of special needs children. Are their lives and personalities affected by living with these children? Are they more or less tolerant? Are they more or less compassionate? Do they love or resent their siblings? Do they feel sorry for themselves? Do they deserve more understanding? I am not sure about any of these questions, I know we try to be fair to all our children, but admittedly we are all affected by living with Teale. We have provided outlets for our children to talk about the challenges of our lives. We have made sure they know we understand the frustrations. We have admitted our own frustrations when things don't go how we had hoped or planned. We let them express anger toward Teale, not taking it to heart, but letting their feelings be heard. Mark and I are honest with our kids about Teale's future and what we think we can hope for her to be. We are growing as a family in understanding of life with an extremely challenging daughter and sister. We have learned that no one quite gets our lives, but honesty with others brings about more understanding.

 "I may not be the Mother I thought I would be, but I am the Mother I need to be." ~Ellie Bradley

Saturday, April 16, 2011

The Hidden Issues & the Lessons They Teach

I wrote this when Teale was 5 years old and it was published in our local newspaper. The responses I received from this simple article were really remarkable. It was not the friends and family that supported my editorial that struck me as much as the complete strangers. Strangers looked up my name and called me just to thank me and I received personal notes that I treasure to this day. My niece told me her teacher used my editorial as a lesson in school, not knowing she was related to me. I even had people hear me in public call out my daughter's unusual name and then ask me if that was me who wrote the editorial. They then would share their personal stories about similar situations.  A nephew of mine used the editorial to write a paper and he educated more kids. As I said I was touched by all the attention it got. When I wrote this article I still felt like our family was an island. We were floating among you typical families and trying to find our continent to land on. It was lonely back then, sure I had understanding people around me, but my heart ached for a place to really belong. Today, the special education world is my home. I fight for rights, try to improve lives and get involved with families that are much like mine. I have a huge network of support and loving people who understand this life also. Some of us joke that we would never had met without these strange connections and that, no offense, I wish we hadn't. As the years have progressed in my daughter's life I have immersed myself more into the special education world and I have also seen changes in society. Sure we still get stares and rude comments, but I think in general, society is getting used to our families out there in the world. Maybe it is because as my daughter ages her disabilities are more transparent. Her voice is obviously different, she walks with an odd gait and she holds her one arm in an unusual way. Her moments of frustration and anger are still looked upon by the average stranger with a double take and you can often see the wheels turning as they try to sum her up. When anyone stares at her when she is not in a good place it certainly will be obvious that something is different. Most likely you will get the snarl look or a growl, maybe a scream or a raspberry that will make you want to stare more or quickly look away. Often people don't know what to do when she is melting down and I will confess, neither do I. What worked one time may never work again, so I'm constantly on my toes, coming up with new strategies to help Teale with her feelings. She has grown bigger than me and I am at risk now if the meltdowns turn into attacks toward me. She never shows these violent outbursts at school or even at respite, she saves them for where she is safest, at home. My children are good at reading Teale and getting out of her way if she seems dangerous. We have taught them that Teale is our responsibility and to call for help or get away if you feel threatened. We have several rooms with locks, so her siblings can go to a safe place. Life with Teale is certainly not typical and it is almost embarrassing our kids have learned these strategies at such young ages, but no one gave us a book on raising Teale. She grows and some things improve, while some things seem more difficult. This past winter we took her to her brother's basketball game. She melted down very fast and very violently, hitting Mark and I, screaming and shooting dirty looks and raspberries at all who dared to look her way. I was most embarrassed for our son, who had to endure this in front of many peers. Teale would not leave and as luck would have it, my husband, Mark had sprained his leg badly, so he could not pick up her 150 plus pounds and get out of the building. We negotiated with her and finally she left with me. When my son got home from his game I apologized and asked him if he was ok. His response "I was worried and embarrassed at first, but then one of the guys came up to me and said, Don't worry about it, we understand, let it go man." Other boys then chimed in and instead of Beau being embarrassed, suddenly he felt cared for. Those boys learned and taught much that day and I will always hold that story close to my heart.

Sunday, April 10, 2011

School of the Holy Childhood

Four years of praying, four years of advocating, four years of hope, sadness and frustration. It has been four years of time wasted in places she wasn't herself and her potential was not being nurtured. We have watched a decline in her spirit, in her self esteem, in our daughter. We have struggled for understanding as to why others didn't see things the same as us. Why God hasn't done something to make this right for her. It has been four years, four very long years. When I look back on it all, sometimes I am angry and bitter. I am sad for the time wasted, for her years of heartache. I know when we first looked at School of the Holy Childhood four years ago, we wanted it badly for her. We saw it as the perfect place and we prayed others did too, but it wasn't to be. We took steps to get them to see our desires more clearly. Slowly we would win this, no matter what, we would not give up. Teale was moved to a district based classroom from an integrated setting in her 4th grade year. We advocated hard that it still wasn't the right fit. Teale was only doing specials with typical children and she was not participating. She wouldn't even talk to the kids she had been raised with since kindergarten. These kids were sweet, caring, compassionate, but Teale was aware of her differences and slowly shutting down. Our hearts broke as she was never invited to a Birthday party or a play date. We were her only friends and she was often painfully lonely. We stayed in that program two years, not because we saw any potential or hope, but because there were no other better or appropriate programs. The only other program we had ever seen and wanted passionately for out daughter was The School of the Holy Childhood. We applied the next year and the year after that. Upon our third year of applying we thought we had it, we were keeping the faith that all our efforts were going to pay off. That year the rejection letter came on Mother's Day weekend. Mark opened it & at first wasn't sure what to do about protecting me from the bad news. Eventually he couldn't just be alone in his sadness and shared the bad news. My Mothers Day had never been so sad, I could barely rally to pretend to be excited about my handmade gifts and special meals my children gave me. I felt like a failure as a Mom, I knew it was the best place and yet I lost again. I couldn't attend our church service that Mother's Day for fear of just crying the whole time. I sulked and grieved and then decided we would start advocating again, harder. We started early, we pulled out all the stops and used every connection we could. We talked to everyone we could about our desire to get Teale into this amazing place. We knew the more people we talked to, the chances of finding people with connections was stronger. We worked on it from as many angles as we could think of, asking for help and prayers, often. It has monopolized our thoughts and our lives. We knew we were winning the battle when the principal of School of the Holy Childhood said she can barely go anywhere without someone talking to her about our Teale. People were out there advocating for Teale, probably far more than I will ever know and people prayed. Last years blow was devastating, so we made another tactical move and took Teale out of district. We would try an all special education school to see if we could get some of our daughter back. The match was poor, a school with too many behavioral challenges, her fears were high. She had made some gains though, so we knew we were on the right track, a school with all special education peers seemed like the best place. She needed to know she was not different but part of a community. Teale needed to start to live her life, not just be a teacher of compassion to others. A place where she would feel more confidence in herself, a smaller setting, one with less explosive behaviors. Again School of the Holy Childhood seemed like the only good match. When they called me to see if I was going to apply again, I took it as a good sign, but was scared to become too excited. When Pittsford School administrators agreed to finally tour with us, I was filled with hope. The tour was amazing, I saw it once again through Teale's eyes and thought, this could be the community we are so missing for her. Beau came on the tour, he had been saddened by her present placement & I wanted him to see where we wanted his sister. He tried to talk and couldn't at the meeting between us and administrators of both SHCH and Pittsford. He was filled with emotion, just like Mark & I, that this was where she belonged. When his words were finally able to leave his mouth, I couldn't be more touched or more proud of his insight. The administrators were moved and impressed by his caring and understanding of his sister's needs. His words were his own, we had not coached him, he knew Teale belonged at School of the Holy Childhood. When we left the meeting I told Beau, if she gets this, you own it. The letter came last week and I cried again, four years, but we had persevered and won the battle. Next Fall Teale will attend a beautiful place called The School of the Holy Childhood. My thanks to all of you who advocated and prayed for Teale. We are overwhelmed by the support we have gotten in this battle. Beau, you are to be the most commended though. Your ability to finally get the adults to see things clearly and give Teale what she needs and deserves. We are proud of what Teale teaches to others, but we are especially proud of what Beau has learned from living with her. She is a person who deserves the best chance to be the best she can be, just like all of us!

Saturday, April 9, 2011

The Debacle

I often say something has "debacled" me & Mark often corrects me, saying there isn't such a word. Well, I have news for you, it's an Ellieism, my own personal word for a plan ruined. Today while I was out running around Gwenn, Teale debacaled Mark. That is most likely how the word came to be, because quite frankly our life has often been debacled by Teale. I don't necessarily mean that in a bad way either, it's just that we need to be a bit more flexible than most families. Often there will be a plan & then Teale debacles that plan with her own agenda. Sometimes I'm sure, her plan is better than ours, like forcing you to go outside when you just wanted to get the laundry put away. I may like her plan, but it does cause us much angst that we are often looking at too much to get done & never enough time to do it. Today Mark & Beau just wanted to practice their sax parts for church tomorrow, but as Mark told me when I walked in, "Teale happened." She is unpredictable way more often than predictable. You may think she is fine in an activity or situation, only to be suddenly, uh, not fine! That's what happened today. Mark went from playing sax to holding an out of control 12 year old until she could regain her decency! Then once she was calm she wanted a car ride, so at this moment Mark is driving around, probably listening to Justin Bieber. He probably wishing he could be doing something, anything else, besides being stuck in a car wasting time. So Mark, my word certainly fits this situation, you were indeed "debacled." I often wonder if there will come a time we actually miss these crazy days when barely anything we plan works out. After all last week I got a taste of the "other side." I spend 4 very calm days with one of my best friend's typical family. What I came home with was that; A) my life is indeed crazy, we are not over exaggerating how different it is from average people & B) that we are blessed in many different ways from the typical world.