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Tuesday, March 6, 2018


There is a video floating around facebook right now that hits home for my husband, Mark and I. The video is of a young Mom talking about "The Last Time."

She has a son diagnosed with autism and she tells a story about being in line to see Elmo, with her raging 65 pound son. That was the moment she realized his life was different from those children and families around her.

We had this exact moment, when Teale was 4 years old. Her raging was new and we were still trying to figure out the "what' of it. Was it our parenting, was it the recent birth of our youngest child, was it Teale's brain damage? Teale adored Elmo. We had just had a Birthday party for her in December with Elmo showing up as a surprise. Teale was beside herself, excited to have Elmo at our house. She didn't even notice her favorite cousin was suddenly missing. Zac had volunteered to wear the Elmo costume for Teale. Her joy was contagious, you couldn't help but smile as she used sign language and her voice to talk to Elmo. It is one of my most favorite memories of a time we gave Teale, exactly the perfect gift of joy.

So naturally, when Elmo came to town a few months later, we trotted off to our favorite children's museum, to see him. We had to stand in a very long line with many typical families. I had Gwenn, our newborn, in a sling on me. Beau was 7 years old and a good sport, knowing Teale's love of Elmo. Teale did not understand the line, she didn't understand taking turns. Teale wanted Elmo and there was no reasoning that could be done. Mark tried to control her as people stared and whispered. She appeared "normal' in those days and we looked like terrible parents, who spoiled her. The rages were new and we had no clue how to deal. The doctors had not warned us that her cerebral palsy and severe brain damage could cause much mood dysregulation. So Teale raged and in those moments, I remember wanting to scream at the top of my lungs, she has severe brain damage. You see, the invisible can be quite difficult. The child who presents "normally" makes others judge you harshly. I have been heartbroken by many strangers and "friends" alike, who think we should control Teale.

So let's fast forward to just a few weeks ago. Teale is now 19 years old and we have offered to take her and a friend to The Razorsharks game in our hometown. The Razorsharks are a basketball team and on that day, much to our surprise, Elmo is there. My 19 year old, 230 pound daughter is thrilled! This moment, is a deja vu for me. I am taken back to when our family was young and Teale's mental illnesses were not yet diagnosed. I am taken back to when hope lived in my heart much more strongly than it does today. I was naive back then, I was sure we would conquer all and Teale would live a typical life. Tears are dripping down my face as the words spilll from me right now. That moment when you finally realize and or except your child's life is not going to be, the dreams and hopes you had, is BRUTAL.

I'm not sure when I realized that love would not conquer all. I'm not sure what caused my shift in realizing Teale would never be a teacher or a musician or any kind of professional. I'm not sure when it hit me, she would not marry or have children of her own. It was slow and at the same time, it was all at once, when my heart broke. When I finally understood my daughter would never outgrow needing Mark and I.

So what is the sunny side of this? What fantastic life lesson have I learned?

Here it is, love does not conquer all. the Bible implies that if we believe enough, all things are possible. I am a person of faith, I believed Teale would use her right arm, because I would find that magic cure. I believed she would read well and learn at an age appropriate level. I believed Mark and I were strong enough, good enough and caring enough to cure Teale, of all she struggled with. I believed in the miracles, that would make her better.

So, at what point did I come to the understanding that Teale is perfect in her own way? When was that moment of clarity? Or have I even hit it yet? The truth is I am in and out of those moments. I have faith and God by my side, but I am a Mom, full of emotions. I hurt for the losses Teale experiences and does not even understand. I hurt for myself, the knowledge she will always need Mark and I. The understanding that our "Golden Years" will never be alone. As others complain about empty nest, I wish for it...

There are times I wish I could go back to Teale's birth and right, the wrong. There are times, it feels perfect, that this is my family.  This is what Mark and I were destined to be. My grief is real and somehow unending. Every milestone a friend's child achieves can throw me into that dark place, where the "what if's" haunt me.

So as I thought about "the last times" in Teale's life, while watching the video of this young Mom, tears rolled down my face. Seeing her hopes and dreams crushed, reminded me of myself. It reminded me of the strength I can display on the outside, while I am seriously breaking on the inside.

The pain is not nearly as bad as is was in the early days. While I watched one milestone after another, not achieved. I then tried to find strength, in the slow progress, I did see. I have accepted our path in many ways and in even more ways, I believe, I have embraced it. I have embraced the community of people Teale is a part of. I have chosen to work and volunteer in the field, as it feels more like a calling, than a job to me.

But, I need to leave you with one last thought, it hurts, it hurts me every day of my life, to watch my daughter to struggle. I will not apologize for this, I will not sugarcoat my loss. Teale will never be the same as a typical child.
I will never be the same, as I was, before she came into my life.

Sunday, March 4, 2018

Respect is the “R word”

We didn't plan on having a daughter with Developemental Disabilities. Mark & I planned on having brilliant children, gifted even. We wanted to have 4 or 5 children, but Teale happened & we knew our limitations. Those dreams seem so far away now. We may have been thrown into this world of special needs and mental illness but we chose to embrace the cause & the community. We chose to love & to learn. It is a cause I never knew could make me feel so passionate & empowered. Life throws you curves, but our "curve" is our heart & our soul. Teale needed to be, because without her, Mark & I would not know the community we embrace and love so passionately. RESPECT is the word. Live it, love it, be it!

I found this post on a Facebook memory. It is a post about pledging to end the R word. Ending the use of the word “retard” became a campaign a few years back. In my childhood, calling a person  “retarded” was a common dis people would say to each other. Now a days, the world is more aware of being respectful and kind. Bullying is a hot topic and teaching children kindness is much more in fashion than when I was young. As kids, we often fended for ourselves and fighting amongst ourselves was just part of childhood. Parents didn’t get as involved back in my childhood. If there was an issue in a group of kids, generally our parents just told us to “work it out.” Words like retard and in my area, BOCES, was thrown around as an insult. BOCES is a local agency that provides therapists and supports for children with special needs. Something our family has relied on heavily. As a kid, I’m absolutely sure I had no idea what BOCES meant, but I knew it was meant as an insult.

Adults are much more involved in helping children to learn to be kind to each other, than when I was young. There is usually much more intervention when children are having difficulties getting along. Anti bullying is a common program in schools. I’m not sure if it’s because bullying happens more these days or because we are just much more aware. Internet bullying is more difficult to catch and commonplace because of being able to hide behind a screen.

So as I started this post, my point was, we didn’t choose to be a part of this community. Our Teale happened and we were thrown into the world of special needs. We learned how beautiful the people are in this community and we have become vigilant advocates of the special needs population. As a kid, retard was an accepted horrible name to call people. Now when I hear it, my heart sinks and all I can think is how sad it is that the person using that word, doesn’t understand just how beautiful love truly can be. 

Saturday, February 24, 2018

Painful Endings

The days seem to be returning to our normal. Teale’s moods seem to be evening out again. It’s hard to tell if I’m right or imagining it though.
Last night I took her out to Mark’s gig. She was in a fabulous mood, until the end. Teale doesn’t like endings and goodbyes. She often suddenly melts down at the end of an event. It’s incredibly frustrating, especially, I think, if I’ve had a great time with her. The sudden shift in mood is difficult for others too. Seeing Teale happy is a joy to many! Everyone who knows her well, loves to see her having fun. Teale’s joy is contagious, it fills the room. We used to say, if Teale is happy, everyone is happy. It’s true, her happiness makes our family more content. When she’s edgy, unregulated and unpredictable, it’s uncomfortable to be with her. I feel anxious, as I tip toe through her moody moments, not sure what will set her off. A sudden shift in moods of anyone is a difficult position to be in, but living with Teale, this is common and quite exhausting. So last night was much fun, many friends and family came out and Teale charmed them all. She made the room shine with her love. The ending wasn’t pretty, but I’m choosing to remember the joy. 

Tuesday, February 20, 2018

Roller Coaster

Some days are a roller coaster with Teale. She cycles fast and furious, super happy, then super angry several times a day. The key is for all around her to stay calm and not get too emotional. Showing emotions just escalates her behaviors. Of course we slip up here and there, laughing because it’s all so ridiculous or snapping ourselves! But we’ve mostly trained ourselves to stay flat. Sometimes I even impress myself, staying calm, when she is completely exploding. Today was a roller coaster day. I’m emotionally drained and trying to regain some peace in my soul, but all I can feel is the stress. Stress in a life with a child, (who is now an adult) with special needs and several mental health issues, go hand in hand. Families like us are often stressed, trying to just survive the day to day. Today I had fleeting thoughts of running away. I’m guessing this happens to everyone? We all wonder about just disappearing and starting over fresh, with none of the past to worry about. As I worked through the day of emotional highs and lows, I tried to remember how far Teale has come. Days like today were good days, in some of our most challenging times. I tried to remind myself that this cycle will pass and soon Teale will be more even again. The thing is, it’s been going on longer than I have even admitted to myself. We are on weeks and weeks of unregulated behaviors and many days of fast cycles. We’ve tried figuring out if it’s physical or if it’s mental? I have taken Teale to out pediatrician several times and to specialists also. We’ve worked with doctors to change medications and at times I’ve had hope those are helping her. I know we will either figure this out or it will pass, but when I’m stuck in these stages of helplessness, I again realize how little control I have. 

Wednesday, February 14, 2018

Positive & Grateful

Today I celebrate 29 years since I committed to marrying Mark. We were engaged on Valentines Day in 1989. Every year I wonder what made us make such a huge decision, after only months of dating? I often wish I could go back to that young couple, with so many dreams and aspirations for life. We were going to make a fortune and have the perfect family.
I think in many ways, we have achieved both, just not the way I envisioned, as my idealistic 21 year old self. The other day I asked our youngest if she thought she would marry? I have asked this before and the answer is always different. This time her response, "I don't know, because I don't want to get divorced."
Heartbreaking, it really caught me off guard. I responded, but my words seemed hallow. Saying something about going into marriage with the belief of success, commitment, flexibility, acceptance, but knowing, if she really saw marriage as a trap, it will be. I believe in our thoughts making our life what it is, at least partially. I also believe in God.
Kinda ironic, if you think about all I have shared about us. I do believe much of the journey of life is what you think and believe it to be and become. I know I talked about having a special needs child, long before Teale came into being. I spoke of "her" even in high school. Maybe I knew I needed Teale to learn the lessons I needed to learn? Once married, I thought Mark and I could be great parents to a child with challenges. We talked about adoption or a program where we would be a host family to kids from difficult home lives. So, did my thoughts bring Teale to me? Could be? Life is full of endless mysteries.
Does your brain think all your successes and loses before they happen? Is staying positive and believing in yourself, in love, in financial success, etc. the way people achieve it? I'm not sure what mysteries we know and live, but I do believe positive thinking does not hurt. Believing in others and in yourself brings good and good brings more good. I've gone through many dark times, when light seemed out of reach, but when you see even a sliver of light in darkness and reach for it, it starts to help you find more. Gratefulness does the same for me, reminding myself of all I am grateful for, brings me more to be grateful for.
Today I celebrate the beginning of the greatest achievement of my life, the bond I have with Mark. Today and everyday, I celebrate our love. Our relationship is the most important achievement of my life because it is the foundation, to everything else I am. 

Sunday, February 11, 2018

Valentine's Dinner Date

Last night was a rough night, to say the least. 
We drove Southeast of Syracuse to a attend a Valentine Dinner put on by David’s Refuge. Volunteers there watch our special and typical “kids” while the parents get treated to a date night with other special needs families and a dinner. It was a long drive for us to risk Teale’s behavior, but we decided to try. We had heard such nice things about the experience from other families. The kids basically get spoiled. They have a terrific time with hundreds of kind volunteers, who have set up an indoor carnival. Teale loves being with typical teens and it sounded like there were plenty of sweet people volunteering, so we were hopeful she’d have a great time. 
Unfortunately it was a way too early morning for Teale. Her moods have been rough for weeks and waking early has been a huge contributing issue. Then add in the fact, we were trying to teach her about appropriate behavior on her weekly Wegmans trips with Mark. She’d had several weeks of very crabby behaviors at Wegmans, growling at Mark and at friend’s he would bump into there. We needed to change the dynamics of her controlling the situation. We decided last week to emphasize she was not the one in control, by not allowing her to go this week. Picking to have her stay home from her beloved trip to Wegmans on the same day as something new, looking back, may not have been a good decision? She had a small rage after we told her she would not be going, so, I occupied her as Mark and Gwenn snuck out the door. Her acceptance that Mark had left seemed hopeful. We'd be able to use this example in future weeks, but occupying her without errands would make for a long day. I decided to do Teale’s hair in curlers, to kill some time. She had gotten the curlers for Christmas and she loved the look, but patience while her hair dried was tough. We weren’t yet telling her about our special night planned. Telling her too early starts the questions and the anxiety, so we’ve learned to tell Teale special plans very last minute. As I did her hair, the questions started, why are we doing her hair, who will like it, who will see it, over and over... I then made, what I think was, my second mistake leading up to our night out. About noon, with hours to go before we had to leave, I told, her about the fun night she would be attending. Teale's anxiety over where we were going, what she'd do, who she'd be with, etc., was horrible, from that moment on. It was especially difficult since we couldn't answer her unending questions without ever attending this event before. Teale unable to accept the answer, "we don't know." She would waffle between excited and anxious all day, what we classically call, "a roller coaster day." We just couldn’t seem to get her soul comfortable. 
Our hope was that Teale would sleep on the way to the event, the drive was over two hours. She generally falls asleep fast in the car, even short rides at approximately mid afternoon often causes her to dose. We were sure she'd feel better after the drive and the evening would be fine. Well, she did not fall asleep, she just switched the radio and asked questions, constantly. It was an exhausting trip and completely worrisome. Now how would the evening go? The event started at 5:30pm and with her already being up over twelve hours, how would she be? If we had stayed home, she surely would have been in bed by 6:30pm. The nightmare of this day would have ended early, giving Mark and I time to recover. All the mistakes of the day were spinning in my head. We stopped at a Wegmans near the event to get her dinner and decided we might as well let her have caffeine to boost her and get her through the event, this was possibly our third mistake. Teale had started liking a cup of coffee in the mornings with me, so she had coffee at about 5:30pm. It was a desperate measure, just hoping to salvage the evening, after such an exhausting day and long drive. Every fiber of my soul was spent and worried, I just couldn't believe she hadn't slept on the drive and her questions about the event were increasing in intensity. Our responses not helping her, at this point. All I can think about is that this date was one of my worst ideas ever! I was filled with frustration and guilt that I had ruined our day. My agitation increased with Teale's. I was starting to think, turning around and going home was the best idea. We could put her to bed and salvage the rest of the night at home. Mark was frustrated with me, rightfully so, but if you tell someone who is upset to calm down, well, it's not going to help them to calm. Mark made that mistake! I knew I had pushed for this date, so I already felt awful, his being frustrated by my feelings, made it worse. I was on the verge of tears. So when we couldn't find the building and Teale's anxiety increased more, I knew I was feeling fragile. We tried to find the building where the kids event was, but then gave up and went to the building we figured our event was at. I tried to quickly go inside alone and find out where the kids were, before Teale got out of the car. She was in a hurry, so finding out we had to get back into the car and go somewhere else didn't make her happy. We found the correct building easily this time with directions from the people at the adult event. The church that hosts this event actually has two buildings close to each other. Getting out of the car, Teale started melting down. Now she knew we weren't going to be in the same building with her. Processing for Teale is slow, her head was spinning and questions were being bombarded at us. We weren't answering "correctly." At this point, I'm sure getting back in the car is our best option, but we had come so far... We get inside and the people greeting us couldn't be any nicer, but Teale is escalating. She starts yelling, walking away a bit, we know we now need space and time. We are already late for the 6pm dinner, as Teale gets louder and more unpredictable. The volunteers try to help, pushing in, trying to calm Teale with reasoning and touching. Both of which are not helpful when Teale is escalating. We need space and time, period. Mark goes to talk to volunteers after Teale has crumpled up her name tag and wants it fixed. He gives them our basic survival guide, that touching doesn't help Teale and actually escalades her, plus we just need to deal with her alone. During that short time he is away, I stood near Teale, but not too close. She suddenly lunges at me and smacks me hard in the face. With absolutely no reaction, I looked around the room, realizing many people had seen her smack me. A few, in total shock, mouthed to me, "are you ok?" At this point, I'm fried and embarrassed, I just want to go home. Mark comes back over and talks Teale into going outside to calm down. It's cold, he's only in a blazer, Teale already had her coat off, but we stood outside while Teale raged. It was brutal, getting in the car wasn't a viable option either, she was actually wanting to go back in to the event, but she could not calm. Getting in a car would be very dangerous, so in the cold, we waited her out. The volunteers came out to check on us and Mark, politely, asked them to go back inside. The presence of others, often makes things worse. We waited and waited, but calm wasn't, coming...
I was freezing, so Mark told me to go to our car, there, all my emotions finally came out. I was balling, totally frustrated, angry, guilty feeling that I had suggested this date, that I had made mistakes all day, that probably brought on this moment. I just wanted to go home. Texting between a couple we were supposed to meet at the dinner and my sister in law, seemed to both help me and cause my emotions to spill over. Showing emotions in front of Teale causes her's to rise, so I often remain stoic. It had been a long day of disappointments and I was worn. I had so much built up frustration, weeks of questioning why Teale has been off. We'd seen her pediatrician several times, hoping it was something simple like an ear  infection. We had seen an ENT who diagnosed TMJ. This possibly why she's waking so early and seems to have more headaches. We saw her psychiatrist to increase her antipsychotic earlier this week and we felt hopeful that did help, until yesterday. I was a mess, sobbing in the car, having a pity party for myself. I was worn and feeling like, even in the community we are supposed to feel comfortable in, we stand out. It was heartbreaking Teale was so uncomfortable in her own skin. I watched as Mark kept trying, as volunteers came to him again and again. It was freezing out, rain had started, an hour or so had passed. Teale's beautiful hairdo was ruined, her dress damp, she must have been frozen, totally worn and Mark too. He didn't want me helping, probably, at least partially, because he blamed me. I had made many mistakes all day that lead up to this. Walking into the dinner over an hour late, with bloodshot eyes was very unappealing. So even if he did finally succeed, could I pull it together? I watched Teale go after Mark, luckily with his height and strength, he could get away. Finally, they were out of sight and I was hopeful they had gone inside, but then I heard her again. An hour or so later and she was still sounding "on fire." Mark was walking toward me and I thought, good, we are going home! A guy was with him and another approached, I could hear the conversation, something about going in the back. The cold rain coming down more, I wished he had just gotten in the car. Fairly quickly, Mark came running back to the car, it had worked and he had left Teale happy. We drove to the dinner, me still apprehensive because I knew what they had witnessed and my own emotions were so raw.  We walked in and I asked for the bathroom first thing. Staring in the mirror, my eyes blood shot, I worried about what others would think? Mark was getting a glass of wine when I came out, but they had run out of white wine, so I passed. Red wine can cause me migraines and at that moment, I already knew I was at risk. As we tried to compose ourselves before walking in, Mark must have said something that triggered me. I could no longer hold it together. I was overcome with emotions and sobbing in Mark's arms, my face still hurt from Teale smacking me and I was just very sad. The whole day had been a huge disappointment. Mark had dealt with Teale over an hour and now I'm sobbing on him, good Lord... He suggested we just go to a bar, but then again, friends were there. I eventually pulled myself together, went back into the bathroom again to touch up my running face. Friends surrounded us, big hugs from all and we sat down for dinner. I probably wasn't the best of company, but we stayed. Mark even got picture texts of Teale having a great time. We had an hour or so to be with our tribe, meeting other special needs families that get this kind of thing is always nice. We went to get Teale and people flocked us, saying how great she was and how much fun she had had. Often after a big rage, Teale is especially even, like the release of the rage, resets her. 
I went to find her and was treated with that beautiful smile and a loud, happy "Mom!" At that moment I was able to see God again. The people who had been assigned to Teale, raved about how much fun she was. I could barely talk, tears still so close to the edge of my eyes, I knew speaking would flood me with emotion again. I thought about how incredible it was that she was so very happy and the people with her, seemed like angels on earth. They could not have been any more kind and generous. The night had been so very tough, but God was still with us and as I tried to thank them, the tears came again. Not out of sadness though, but because, in the end, Teale taught grace and love to more strangers. If I had to bet, there are probably many volunteers still talking about Teale today. They may be wondering how we live what we do. I wonder that a lot too, but I also wonder how I ever lived without Teale? As we left the event, Teale told us about throwing balls, making her bears and especially the nice people she had been with. It was sweet, but in a bittersweet way, if only drop off had gone more smoothly. Ironically, as we headed to the car, Teale asked when she could come back. God sure is funny....

Friday, February 2, 2018


Tonight is a fun night for Teale and myself. We invited a friend of her's to see one of Mark's band's perform. To many, this may not seem like a big deal, after all, Teale is 19 years old and Mark plays out a lot in several bands. But for Teale and I, it is a very special night. In her free time, she has been mostly isolated from peers, much of her life. Not for lack of trying on Mark and my part, but just because the population Teale is a part of, is often too overwhelmed to socialize. Sadly, Mark and I are Teale's entertainment, basically anytime outside of her programs. There are many factors that make connecting very difficult in Teale's world. Kids come from all over to attend her programs, so peers may not live in the same towns or even the same county. Families tend to keep to themselves a lot, testing the waters outside their comfort zones is often too scary. I have pushed to connect with Teale's peers over the years, but find it is often not reciprocal, so then I give up. I'm not sure how the many families I have tried to be social with feel, but my pushing to give Teale friendships often feels like just that, I'm the one pushing. I get that it's more difficult to step outside what we are comfortable in, especially with our "kids" who are so unpredictable. I have had many times that I have failed miserably at getting Teale to do something different, socially. So in many ways, it's easier for me too, to do our usual on weekends and entertain her ourselves. I guess I have just always wanted more for Teale. I have so wanted a real friend for her, one like I had at her age is a big dream of mine. So tonight is very special to me. I can hope it's at the least a fun night of memories, but my heart dreams of a lifetime connection, that will fill both girl's with joy!