Professionals Don't Always Have It "Right"

Our family has had it's share of mistakes to figure out what works and what doesn't as far as helping Andrew to be happy, healthy, and productive for himself. We have been to specialists, therapists, and have read so many "tips" that it's mind numbing. There have been and still are days of remorse that we are/were "doing it all wrong" according to this professional or that advocate. In the end moment, we need to just listen to our instincts and talk more.

Screen Time Bigger Than Life

Andrew LOVES tv, youtube videos, and video games just like every other kid. However, it becomes his obsession and to a fault. Not the typical, "I can't wait to play again and pass that level" type of way, but he literally cannot stop daydreaming about what he's already done or what he's going to do next in Minecraft or Outlast or that last hilarious episode of his favorite reaction youtube star. It was impeding his everyday activities. For example, taking a twenty minute shower and completely forgetting to wash anything because he was daydreaming about Minecraft the whole time, not just once, but every. single. shower. And it wasn't just showers, it was everything. Getting dressed took forever, because halfway through he'd stop to daydream. Brushing teeth, two strokes then daydream. Dusting the bookcase, two hours later he's just sitting there, daydreaming and hasn't even started.

We tried using screen time as a reward to get him to complete tasks. We had been told by parenting sources and even professionals in the autism/fasd community that it's a great tool to help motive autistic/fasd children. That would just end with him obsessing over it and rushing through the task to get to the screen, which then required us to check everything before he could have screen time and 90% of the time he'd have to redo the task anyway. We tried taking it away when he'd break the rules, but then he'd just sit and daydream about it until the "ban" was over and then still break the rule the next time (the rule was usually broken because he was obsessing over screen time). 

We were told by his social worker at school, his special needs therapist, and other experts we were doing it wrong and that we needed to schedule his screen time so he'd know what to expect. We were disrupting his routine by not having it at X time for X minutes/hours a day. That's where this obsessing was originating, because he wasn't getting it in predictable intervals. When we tried that we kept having to move it later and later in the day because we'd end up with rushed tasks before screen time and then no tasks after due to getting his fix. 

In desperation that scheduling was the "right" way, we started sitting with him to get his tasks done so that he could get the screen time he so desperately wanted. We were pretty much the reminder to not daydream. Then we were told that we were putting too much pressure on him so stop watching him and let him just do it on his own and he will miss once in awhile, but get it the majority of the time. He didn't just get it and the consequences of that sucked for him and people around him. 

We were frustrated, he was frustrated, we were all arguing and fighting and crying and hopeless. He wanted more screen time, we wanted him to get the basics done without having to walk him through every step, he wanted us to leave him alone but couldn't stop daydreaming, and we couldn't figure out a way for everyone to be happy. We'd get to a breaking point where we would take it all away for an indeterminate time to try to reset and things would get better for a little while until we brought back screen time.

Being Told You Suck, Sucks

Ok, I'm going to go in another direction for a moment, because it's important to this post and important for other "guardians" to hear. I'm Andrew's step-mom and there have been numerous times the therapists/specialists/teachers would roll their eyes or blatantly ask why I was there when I went to the meetings, filled out forms, etc. Andrew lives with his father, Andy, and I full time. I'm a full time guardian. I'm part of this. We struggle and love together as a family. We are, above all, a family. These issues we are having, we are having as a family. My input matters because I'm part of this family.

I am a somewhat blunt/logical person and will try a lot of things once but if they don't sit right with me I will say something or if I see something work I want to continue. Some people have said I'm a strong woman, other's have said I'm a control freak, and I'm still insecure on my position after all these years because of how "step" parents are viewed, that I tend to look at my position negatively. Do I have a right to speak up for what I think Andrew needs? Am I being too pushy? He's not my "real" son according to them so I should just let his "real" parents deal with it. Yet I just can't keep my mouth shut when I feel strongly.

My personality doesn't bode well with professionals being told by a "non-parent" that maybe we're missing something or that yes, he doesn't like making a daily list or reminders but it helps him remember, so we want to continue. When I brought up that maybe we should get rid of video games completely I was met with cat butt face. That pinched look of disdain. Why did I want to "punish" him when that's not my job as a step-parent (read: non-parent)? It's his outlet and something we should never take away.

The day I knew these professionals thought I sucked and didn't belong in the family dynamics was the day my husband told me that at Andrew's therapy they talked about a new rule (that my husband came up with btw) to try to address issues we were having. Andrew's therapist said "oh, was this something she came up with?" with that cat butt face look. Andy got mad and realized that I was viewed negatively as a step parent and for who I was. Before, we would fight about what the professionals said and what I thought and Andy would say "but they are the professionals, they know what they are talking about". I think, at that point, he finally saw that the professionals weren't always right. They are people too with their own emotions and thoughts that can cloud the situation. 

Screen Time is Gone (mostly) - It Was That Simple

Andrew had just gotten home from being with family that do not have limits on screen time or many rules. He has a blast there but it really takes it's toll on him. He had gotten home exhausted and moody from not having slept much or eaten well for several days.

After a good night's sleep we sat down to talk about how his trip went and made several connections with him about his screen time obsession. While he was away he spent all his time on video games or watching tv and said the majority of time he spent with some family members was sitting next to them watching tv. There wasn't much connection and he said he felt that he missed that opportunity. He felt huge ups and down in his emotions and very overwhelmed with excitement which is why he wasn't sleeping much because he would play through the night. There was a tremendous amount of anxiety whenever he had to stop playing to give others turns which ended up in fights and meltdowns. He felt he couldn't stop because he would be missing the excitement.

Then we discussed how he felt at home during those times when we cut out screen time. The anxiety wasn't there because he knew screen time wasn't coming. We talked about when it was scheduled and the anxiety was back. We talked about how he wanted to feel inside, like a roller coaster or more level and if leaving screen time behind would make him sad. He wanted to try it and see.

All of us came up with a plan. Dad or I will randomly give screen time, usually in the moment, or the wording is intentionally vague so as not to set up an expectation. This helps Andrew not dwell on "screen time is coming" and get anxious. It also helps him stop the activity because he isn't already overwhelmed with excitement, so he gets to enjoy the time. At this point, he's not playing video games and tv is a once a week movie with the family.

This all flies in the face of what everyone was telling us. We are "punishing" him by taking it away because it's something he enjoys and wants to do. We are being cruel and too strict. These were all things we heard when we talked about it before. Instead we decided to listen to ourselves and work it out as a family. If you ask Andrew, he says he hasn't been this happy in awhile. He feels calm inside.

Unintended Awesomeness

We never knew Andrew was such an artist, but that's his new obsession. It's something that he really loves to do and will easily spend hours drawing a new character, but when he feels like reading, he will put it away and move on easily. He watches youtube videos and draws along rather than passively watching or feeling like it's a competition and getting upset. It's absolutely amazing to see him be so happy with something and not overwhelmed with anxiety over it. Not to mention he's really, really good... and that's not just the mom part saying that. 

 Andrew drawing

(Posted with Andrew's permission)

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