Our Zany Family

If you wanted to understand our family in a nutshell, I present to you two things that happened in the same week a few weeks ago that I feel really describe us. The first happening occurred while Primero was watching the kids and I was at my Women’s Empowerment group. He text me and I got the message after the group. When I got home he told me the whole story. He had been changing the screen doors to the glass doors for winter (I had actually asked him to fix the screens, since I had bought the replacements kits, but whatever) and went into the basement for a moment. When he came back upstairs Love Bug gleeful told him he was watching a movie. Primero checked the TV and discovered Love Bug bough the new Aladdin movie. I showed Love Bug one time how to use the remote and he has been controlling the TV and cable box ever since. I wasn’t too happy he bought the movie, but at least it was something I had wanted to watch.

The second event happened a few days later. We had just gotten home from work/school and Chica Marie opened the closed door to her bedroom to change into clothing for cheerleading practice. She came running back out exclaiming, “Mommy! Melodie (one of our cats) is eating bacon in Love Bug’s bed!” Huh? One, how did the cat get into the room if the door was closed. Two, where did the cat find bacon and not just bacon, but cooked bacon? I mean, I get why she was eating it in bed, she was just living the dream. I rolled my eyes and went to clean up the mess, thinking, “sure this fits.” It’s the wacky stuff like this that seems to define our zany little family.

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My Birthday

My mother never sent me a happy birthday text. My birthday was the first. I took the day off of work and spent it treating myself. After I dropped the kids off at school, Primero surprised me with a very thoughtful gift. He had seen how my old make-up case was falling apart, so he bought me a new one. He also bought me a new make-up pallet with gorgeous colors. When I started making myself breakfast he insisted on taking me out instead. So, we went to a local crepe shop and discovered his cousin works there. After delicious pumpkin crepes I had a pedicure and massage, then went to see the Downton Abbey movie by myself. I’ve never gone to see a movie by myself, although now I don’t know why. I love the movie. Just being back with the characters felt like going home. The plot was well done, but really it was just all of wonderful characters doing their thing that I found delightful. I hope the movie is released on DVD so I can watch it again and again. Once the movie ended it was time for me to pick up the kids. We had pizza for dinner because I was going to the Women’s Empowerment group that evening. I had made lavender cupcakes to celebrate my birthday. My mom posted a happy birthday message on Facebook. So, people could see it. I think treating myself on my birthday needs to become my thing. It was a truly great day.

Misdiagnosis

This afternoon I got the results of Love Bug’s neuro-psych evaluation. The man who facilitated the various tests does not believe Love Bug is on the autism spectrum. He feels Love Bug has pretty intense ADHD, ODD (dammit), and Intermittent Explosive Disorder. Fun. He said he was really looking for some ASD signs, but feels like the social difficulties Love Bug has is because of his behavior, not because the wiring in his brain causes him difficulties. He found Love Bug to be quite smart, being in the 90^th percentile in more than a few areas. But, when Love Bug did not enjoy one of the testing methods, he performed low average or less-than average. This was not a surprise to me. On the one hand, I feel validated because I didn’t readily believe Love Bug was autistic. But, on the other hand, I feel like we are losing a community. There are Autism walks, and societies and special classes at school. There is nothing as active like that for ADHD, ODD or IED. Even more concerning, the only other special education class available to Love Bug would be the dreaded Emotional Support classroom. This would mean changing schools. And I fear this labeling him and limiting his potential. He is smart! I know this about him. And I want him to be challenged because I see his potential. He has a mind for mechanical things, he could be an engineer! But, if he doesn’t do well in school, he might not reach his potential. Today was just the preliminary report. I will receive the final report in a few weeks. I need to be able to speak to his wrap around service provider. We need to revisit the possible medications for Love Bug. I feel like we are starting all over again.

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Finding Help in Random Places

I mentioned previously how a human services training I attended for work allowed me to help Primero. The training also put me in touch with a community liaison from the mental health provider of the kids’ insurance. I was able to express my frustrations in trying to find help for Love Bug over the summer and how I felt the agency we were working with at the time did not really help. In fact, I felt like leaving them for a different agency was part of the solution we needed. I know the mobile therapist we worked with did not really know what to do with kids on the spectrum. He admitted that to me. When I questioned why they did not list ASD on Love Bug’s file, he indicated it didn’t needed to be listed but it did inform his therapies. Only it didn’t. And the further we have moved away from the agency, the more evident it has become to me that they were part of the problem. Love Bug might not understand social interactions like a neurotypical child, but he is sensitive to how people act and react to him.  He is adept at picking up on the people who do not accept him in all his eccentric glory. He was picking up on the mobile therapist’s evident frustration and dare I say, dislike, of him. Me, on the other hand, I was drowning in the negativity. I would feebly try to point out Love Bug’s good points only to be shot down, in front of other people, and belittled for not choosing to medicate my child. None of this was helping us. None of this was making things any better for anyone in our family. In the thick of it, I couldn’t see the way out. I held on tightly to my beliefs about my child. He is capable of more than we give him credit for. Yes, he struggles and yes he needs help. But, he is not and was not the daemon spawn the previous mobile therapist made him out to be. He is not dangerous or maliciously focused on hurting someone, like the mobile therapist told the school during our IEP meeting, And, he is not ODD. I want that off his records because while he is defiant, he is not doing it spitefully, he is refusing because he cannot comply. In speaking to the representative who was at the training, she encouraged me to set up a meeting with the insurance company, the new agency and maybe even the school to see if we can get everyone on the same page. This is in the works for after Love Bug completes his neuro-psych evaluation. The insurance company also initiated a review of the agency, basically asking them to explain themselves and treatment of Love Bug and our family. I wasn’t looking to get anyone in trouble, but I see this agency showing up a Autism events and I would hate for another family to experience what we did. I have received a letter about the results of the inquiry, but I haven’t yet opened it. I guess it doesn’t so much matter what the insurance company decides, since we are with a new agency for both the kids. Love Bug deserved better. All children deserve to be treated with respect and dignity, no matter how defiant or troublesome their behaviors might be

Clout

Like a typical teenager, Primero does not always see the ways that I help him. He has previously expressed how his biological family would be there for him if he were ever in a physical altercation and I think he doesn’t necessarily think of the ways I am there for him. But, I recently had an opportunity to help him out, twice. Last month I went to a training at the county services building intended for new employees of the human services programs. I had attended many moons ago when I was a new employee and our acting supervisor decided it might a good time for a refresher. I figured I would be out of the office for two half-days and that was good enough for me. It turns out, this training helped me in two significant ways in my personal life. One of those ways was making a connection with a Juvenile Probation Officer. After his presentation I asked him if they ever allow students to shadow in his office and he said I should email him to set it up. Before I sent the email, I text Primero to see if he would be interested. I didn’t want to waste my time if Primero was not going to follow through. He text back a very excited affirmative and after I emailed my contact I put them in touch with one another. A few weeks ago Primero spent the day in the office and he learned so much and was very much excited about continuing his education to have a similar career. I was so happy to be able to help him make that connection. The second way I was able to help him was with an issue at work. Generally, I stay out of his work life, other than what he tells me or some general advise. But, he asked me to get involved because he was upset about how a supervisor yelled at him and treated him poorly. I was cautious about addressing the issue, but decided I would send an email from my work email address, which is more professional and official than my private email. I blind carbon copied Primero so he could see what I said.  

“Good afternoon Supervisor - We have never met, but I have heard a lot of good things about you. My son, Primero, has been working in the escape rooms and game room since December. I’ve been so proud of him for getting this job and excelling the way he has. I know he is learning valuable job skills working for your organization. Ordinarily, I offer him advise and a listening ear, choosing to not engage in his employment concerns. However, when he brought home his latest concern, I felt I needed to get involved. Apparently, he had an altercation with a manager during his shift yesterday and I am concerned with how strongly he was addressed. Now, I know my son is sometimes a boundary-pusher. He explained he was being written up because he was not in his work station as was expected. He accepted full responsibility for being away from his assigned station and was not arguing against getting written up, he knows it is justified. The concern comes from how he was addressed, in a very non-professional manner. I am sure it can be hard keeping track of so many different work stations and employees, however my son was screamed at and humiliated after accepting responsibility for his actions. This, to me, is highly uncalled for. I suspect an employee of contemporary age to the manager would not have been degraded as my son was, for the minor offence he committed. I sincerely hope this matter will be addressed and become a small blip in an otherwise untarnished work record. I know Primero enjoys his job and I also know he is a social butterfly who needs to learn how to keep work and his social life at arm’s length. I am proud of him for being able to stand up for himself, but I wanted you to be aware of my concerns as a parent. I invite any discussion you feel would be necessary going forward. My personal cell phone number is 000-000-0000. Thank you for your time.”

It turned into a very positive experience for Primero. The big boss recognized the reaming-out was uncalled for and talked to Primero about it. He also addressed it with the supervisor who admitted he needed to keep his anger in check. He apologized to Primero and everyone was able to continue working together positively. Primero was tickled pink that the clout of my work email address (it’s a .gov email) seemed to drive the big boss into action. I’m not sure if my status as a grunt worker for the Department of Labor and Industry was really the driving factor or simply because I was a mom reaching out about my kid, but in the end, it worked out for Primero. And, now I think he can see I have more to offer than making sure he does his chores and pushing him to stay in school.

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