Bad News Comes in Threes

It has been a rough week. After learning Monday morning that Love Bug was being expelled from daycare permanently, a co-worker shared the news that a customer died from injuries sustained in a car crash that same morning. The woman had been attending training in the county near us. She was trying to better herself after years working in the manufacturing field. Through the Trade Act program she was able to go to training without any cost to her. I worked hard to find a solution for her because her testing scores were low, but we found a program that allowed her to increase her academic levels and prepare her for the occupational training. She had hoped to become a counselor. Just a week prior to the accident, she had been in the office meeting with one of her case managers. I didn't get a chance to talk to her because I was busy. She was so happy and excited to be in training, so proud of herself for how she was succeeding, even though the work was hard. She was on her way to class the morning of her death. A tractor trailer truck failed to stop in a construction zone. It slammed into my customer's car and hit two other vehicles before being stopped by a tree alongside the road. My customer as the only fatality, but others were hospitalized. When the training provider emailed me the next day to let me know what had happened, she expressed condolences and shared the consolation was our customer's strong faith. I hope she is resting in peace.

Since bad news comes in threes, I found out on Friday that it was my CHOR family worker's last day. She had taken a different job helping unaccompanied minors coming into our country. It is important work for her, not only because her family is from Mexico, but because she truly cares about young people and giving them a shot at a better life. She has been my family worker twice and always ca friendly face I knew I could count on at CHOR. I will miss her greatly, but I hope she is able to use her passion to help our community be a better place.

No Solution

Love Bug is now five years old. He celebrated his birthday yesterday with cherry cupcakes and a meltdown at the movie theater because I didn’t send money for him to get popcorn. The daycare has been working with me, they continue to allow him to attend. Wednesday they moved him to the upstairs school age room. He had an amazing day and did well on Thursday too. I am holding my breath and waiting for the other shoe to drop, to be honest. I don’t want to look the gift horse in the mouth, but I am fairly certain this is a honeymoon with the novelty of being in a different room. At some point, I’m sure the other behaviors will emerge. And I am trying to find an alternative solution. I have spent the entire week calling every place I can think or that was suggested to me, in hopes of finding a special needs daycare. It seems to be an impossible task. I have four sheets of papers full of notes from all of the places I have called. I posted on the local autism support Facebook page asking for suggestions. I posted the same plea on my own page and on a local foster-adopt page. I chased down all of the suggestions but still nothing has panned out. I called the local behavioral crisis management line and we will be getting a case manager, but that takes time. I called the state post-permanency hotline and we will get case advocacy and respite from them. We are also getting an advocate from the Disability Network of the state. I called our mental health insurance case manager for help and spoke with the supervisor of the wrap around providers. Still, nothing has resulted in a place for Love Bug to go when I am at work. I am seriously considering opening a special needs daycare because this is simply insane. Our local IU (intermediate unit) basically told me there is nothing for kids in the summertime, I need to wait for him to start school. That is a really long time from now, when we are dealing with an eviction notice. We need help and we need help now. I called an acute partial hospitalization provider (waiting on a call back). That might be our only option. The supervisor from the wrap around service provider really wants me to medicate my child. I really don’t want to do that until we have a better understanding of his diagnosis. Our 7/22 appointment with the neuropsychologist cannot come soon enough. A friend of a friend put me in touch with a woman whose now-grown son is autistic. We spent nearly two hours on the phone talking about the things she had to do 15 years ago to help her son. It was encouraging to hear her son, who is now 20, is in college and doing well. But, it was discouraging that she thought this was an impossible task for a single parent. She stated she could not imagine “doing this” alone. She quit her job to stay home and help her son. She mentioned another mother she knows who left a corporate job to become a teacher so she could be there for her autistic son. I am the sole provider for our family. If I do not work, we will quickly be in a dire situation. I cannot be such an anomaly as a single parent of an autistic child needing full-time daycare, can I? I might be. But, what I am also is tenacious. I will not give up until I find a solution that helps Love Bug and works for us as a family.    

The End of the Road

My heart aches, my eyes are swollen from crying. Love Bug has been kicked out of his daycare. They feel he is too much of a danger to himself and his classmates because he continually tries to escape not only the room but the building and he is increasingly physical in his tantrums. The TSS doesn't seem to be making much headway with him. His mobile therapist only has limited hours. And the daycare does not have the staff to deal with Love Bug's issues. They issued the edict this morning via a phone call while I was at work. I immediately began searching our options. They are very limited. We need a daycare that can accommodate Love Bug's needs and also be willing to transport the kids from our elementary school when school starts. There are not many daycares willing to pick up from our elementary school. There might be less than 4 in the whole city. And the two I spoke to were not appropriate for Love Bug with large class sizes and no one-on-one attention. I called every possible resource, including our local contact for disabilities (we are going to get a case manager) and the local autism resource group. I even posted on Facebook to find help. Thus far I have found a lot of no's. The mobile therapist came over tonight and Love Bug had a massive meltdown. We all ended up on the floor until he calmed down. And then we talked about options, of which there are few. At this point we are seriously considering a partial hospitalization program. So much for kindergarten. As I watched the dishes I heard Love Bug sobbing in his bed, "I don't want to leave my daycare. I don't want to leave my friends." And my heart broke even more.


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Belated Father's Day

For the second year in a row, we didn’t really celebrate my dad on Father’s Day. Last year my mom was mad at me and my sister, so they went away for the weekend. This year, my mom was not feeling very well after her chemotherapy and my dad didn’t want to tax her with a celebratory meal. Conversely, last year on Mother’s Day my family and my sister and brother-in-law waited around for hours to see our mom after she got home from the hospital. This year we had a nice breakfast at Cracker Barrel to celebrate my mom. These minor events show a greater picture of the relationship my parents have. In my opinion, my mother is more selfish and self-centered than my father. I suggested we try to do something low key this weekend for my dad. I’m not sure if it will happen. The kids and I did take him a card, one I felt really spoke to how I feel about my father. It expressed how much he meant to our family and thanked him for being a hard worker and helper, which I feel he is for us. The kids gave him big hugs and I know he appreciated their affection. I know my father is a more simple man, content to receive little appreciation. I wish we could do more for him because I think he deserves more than what he gets. I know my kids appreciate him. Love Bug is enthralled with my father and everything he does around the farm. He is always so excited to help him build the camp fire to roast marshmallows and he loves when my dad takes him for a ride in the truck. The last time we were up to the farm, Love Bug sat on the porch swing and talked my dad’s ear off, about what I do not know. They are buddy’s. I’m glad they have that special relationship. My dad is a very special man and a very good father.

Can Do

I have hated my body since third grade when I needed to start wearing a bra. A real one, with cups and all. I was mortified when the boys in my class snapped the band on my bra, gleefully announcing to the whole class that I was wearing one. My stupid developing body wouldn’t stop there and my ample chest was a point of conversation until I was homeschooled in eighth grade. I tried really hard to take better care of my body when I was trying to get pregnant with my ex-husband. But, once again my body let me down and I felt justified in my zealous  distain of my body.

 

During the yoga retreat I tried stand up paddle boarding for the first time. Standing up on the board was much harder than I thought it was going to be. When I tried to stand the first time, I got myself into a pike position, emulating downward dog, and I could not for the life of me figure out how to stand erect. Slowly, with much effort and tons of wobbling, I stood up. I managed to stay on my board, belly flopping once but landing on my board and not in the water. In fact, I stood up a total of three times. I was immensely proud of myself when I was actually able to paddle with some conviction the third time I stood. As I became more comfortable paddling upstream, I actually had a positive thought about my body. Despite my poor care of it, my body managed to produce that day on the river. It did something I didn’t think it would. My body was not this broken piece of trash, to be berated as useless and worthless. It still needs a lot of work and I am nowhere near believing my body is a temple or anything like that, but to acknowledge it could do something I wanted it to do, even if it took a lot of effort, was encouraging. I plan on going  to local stand up paddle board events this summer to increase my strength and ability. My body can’t make babies, but there are other things it *can* do.

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PDA

PDA. I was searching for ways to help my Love Bug when he struggles at daycare and at home. I found PDA. Last week if you had said PDA to me, I would have thought Public Displays of Affection. This is not the meaning I think of now. PDA is Pathological Demand Avoidance. Just the name resonates with me when I consider Love Bug’s behaviors. But, when I read more and when I completed the questionnaire, it was like unlocking a huge door in understanding my little guy. Essentially, at their core, the meltdowns Love Bug has are really panic attacks related to the number of demands that have been placed on him. He short-circuits, hits an overload and just goes buck wild. I found it oddly confirming to read some of the strategies listed because I have already implemented some of them to illicit cooperation from Love Bug. I’m not perfect, by any means, but the injection of humor or distractions is definitely something I’ve been using, mostly successfully, to keep Love Bug from an explosive issue. What drew me into this finding was reading about children who seem to “pass” verbally and socially when it comes to ASD, but in reality they are not doing so well. When it listed charming as one of the ways kids with PDA cope with demands, I knew in my heart-of-hearts this was what plagues my Love Bug. I text the mobile therapist and asked if he has ever heard of this. I know the mobile therapist is feeling pretty frustrated with my little guy these days. But, if he can see that Love Bug is not reacting to misbehave, but he is having a version of a panic attack, maybe he can help us to better manage the stress Love Bug is feeling. This potential diagnosis also helps explain why all the structure that the Early Intervention group touted as the golden ticket, didn’t sit well with me as the answer to helping Love Bug. He likes structure to know what is going to happen, but he mostly likes not having demands placed on him. The bottom line for autistic kids with the PDA sub-type is they need to be in control.

 

I don’t know if anyone will take my discovery seriously. I’m not a mental health professional, after all. I am, however, a Love Bug expert and if I was already using some of the strategies listed, implanting more of the same could be beneficial, I would think. Still, I don’t expect anyone to take my word for it. I will be talking to the neuropsychologist when we have our first visit in July. I want him to find the right diagnosis to help Love Bug, so I want to give him things to ponder, to see if those things fit. I fully recognize I could be wrong. But, I started crying when I tried to read the case studies of the young children who were diagnosed because it was like every piece of the puzzle was just clicking right into place. So, I want to work on adapting some of the other listed strategies and when I see things working, I want to help explain to the daycare staff, the school staff and the mobile therapist what works so they all can help Love Bug get along.

Emotional Recovery

After I came home from the yoga retreat I was feeling pretty poorly. Emotionally, I felt raw from the trip and I didn’t really understand why. There wasn’t anything overt that happened, other than a tense moment when my sister was running late and taking it out on me. Still, I came home feeling like a lame loser. I know my sister does not want to be like our mom, but in some ways she acts similarly. I kept mulling over in my brain why I felt judged by her. I couldn’t tell if it was just me being sensitive or if there was really a cause. I still don’t know if I have an answer. I know I was hurt that my sister left me on the hike and didn’t seem to care that I was not feeling well. Maybe it was that disappointment that made me feel like she was embarrassed to call me her sister. Maybe it is my own disgust with myself for not being the fit yoga instructor, high-power, world-traveler like her. In comparison, my life is rather dull. Only, it isn’t. I have a lot of excitement caring for my children and our crazy little circus of animals. And, I would never want a job that I can’t walk away from for a weekend to enjoy myself. I know my sister has a doom and gloom vision for the family farm. She professed having zero attachment to our childhood home, which made me feel so sad. I love taking my kids to the farm and would hate to not have that option anymore. My sister thinks my parents should dump the farm, she sees it as worthless. I have hopes to help save the farm, to make it a working farm again. We were the fourth generation on my dad’s side to have lived on the farm. My grandmother moved there in the depression when she was three years old. My dad grew up there. We grew up there. This is all worthless to my sister. The farm grounds me, I always feel a sense of peace when I am there. I like my home, but I long for the country with space and not concrete around me. Financially, I can do nothing for the farm. My sister says she refuses and if our parents need help, it will have to be on her terms. I wish I had more time to dedicate to the farm. I would love for my kids to grow up running through the creek, up and down the hills of the farm. I thought it was an idyllic childhood.

 

I have recovered emotionally, from the retreat. I will see my sister again on the Fourth of July for a family picnic. I’m hoping with other people there to act as a buffer, the same defeated feelings won’t return. I know we have made different choices for our lives, but no path is lesser or greater than the other. My sister does not want children and I respect her decision. I hope she never feels like I judge her for making that choice. I wanted to be a mother enough to do it on my own. I feel like my choice is judged and my mothering is found wanting. And that is just the tip of the iceberg when it comes to evaluating my life choices. I find it much harder to not care about what my family thinks. Personally, I like my life. It can get crazy, but it is full. I love my children and I am grateful I have the immense pleasure of raising them, trauma warts and all. I guess, more than anything, I would like to feel understood and that just doesn’t seem possible. I know, when we were growing up, my sister looked up to me. She slept with me for more years of our childhood than not. She told me all her secrets, shared all her hopes and joys with me. She was a sensitive child and much of the time she felt like I was the only one who understood her. I don’t know when I switched from cool older sister to pathetic reject that is unfortunately a family member. I’m probably over-reacting. I hope.