Saturday, March 12th, 2016

My mom told me today she had an appointment booked for Thursday at 8:30 am in the morning and I want to come with because this is my child. My mom wants to see how they did the scoring and what their testing system they used. I am thinking there was a misunderstanding when I did the test like I took the questions too literal but my husband added “or they read the answers wrong” and my mom thinks they are looking too into it and not looking at other possibilities like him not playing with other kids in his class. “Did they ask him to play with them? Maybe they don’t want to play with him? Where is the teacher, where is play buddies?” This is what my mom said to me about it. Him taking off his clothes, he isn’t taking them off because he doesn’t like the textures of his clothes, he is taking them off because he is hot and likes to be in his underwear and he isn’t naked, he is in his underwear. I told my mom my son has never told me he couldn’t hear the TV when I was vacuuming, he would say “It’s too loud, turn it off” and I would tell him “Then leave and you can come back when I am done” and my mom asked me “And what is he doing when he tells you that?” and I said “Watching TV” and she said “see, that’s why” and I said he never told me he couldn’t hear it or said why and she said I didn’t put it into context, I only heard the words. She also told me my son does not make weird noises, he is playing and I said he goes “wuhhhh” and he shrieks and my mom said “that is what kids do” and I said he told me he likes to be loud so I tell him “Then go outside and do it or go do it in your room” and she told me I needed to be positive about it like say “Okay Michael you are too loud and hurting my ears, I need you to go do it on your room and you can come out when you are done.” My mom isn’t upset with me, she knows I did my best with answering the questions honestly and I told her I could have unintentionally exaggerated but I didn’t mean to and she understood I was going by how I felt and my perspective and they didn’t take her word on what she wrote, they only took my words more and I said probably because I am the mother and she is the grandmother and she said “right.”

I sometimes feel like I am a bad parent and I can’t handle my own child and here is what I did to him but my mom knows I do my best and she isn’t being critical of me. She told me earlier how it’s my husband’s and my fault for our son acting up and then we are yelling at him when he is being wild and crazy and making funny sounds and she was telling me that is a parenting issue there, not his problem and then we make it his problem by kicking him out of the room. She says we get so into our computers, we tune our kids out so they have to act up to get our attention and then we are yelling at them.

When my son gets all hyper and starts talking in a high pitched voice, it raises my anxiety level and then I am irritable and overwhelmed and cranky and my ears then hurt and feel sore. At one of my son’s appointments with the school district I told them how my son will make weird noises and shriek and run around and he doesn’t stop when I tell him to. My mom told me they didn’t look at why he was doing it and kids always have a reason for bad behaviors and they just don’t do them for no reason because they want to. I also told them he will have tantrums when he doesn’t get his way so I ignore them and he will sometimes throw himself on the floor and some stuff they had about him on the paper was out of date. My mom said it was implied in the paper he had problems with understanding emotions. Another example of me being literal because I didn’t see it written in there but she said it was implied. I don’t know how they got that idea but perhaps in school so obviously he acts differently there. I told my mom I have seen him chew on his coat string at school or on his sleeve and she said that is just a nervous habit and there are too many kids so he probably can’t handle that big of class. I saw hi m bite his nails at home today and my mom asked him why he was doing that and he said he had skin he wanted to get rid of. my mom said she used to bite her nails so what. I said to my mother I don’t see how biting nails can hold someone back and she said she knows and she thinks they were just looking for proof so they were picking out behaviors he does  and calling it ASD.

My mother apparently has a different perspective on my son and I totally see him in a  different light than she does. She was saying he doesn’t do this or that and I was saying he does too and saying he does them often and my mom says he doesn’t. Lately I noticed he has kept his clothes on and she said he had been doing that for a while. She says he doesn’t make weird noises and I used some examples of what he does and she said that was called playing and she said he doesn’t run around the house and I said he does it all the time.

Now I feel I am crazy because did I imagine all of this in my son? Did I unintentionally pathologized my child by talking about him and the things he does I don’t like? They got a different a different picture in their heads than I had in mine when I told them and plus they observed him in school. They did notice the inconsistencies in the questionnaire thing because he acts different at home than he does in school and my guess was because school is more stressful and home is more relaxing because there isn’t so many demands and directions to follow and not so many transactions between activities. I also acted better at home when I was a child too because it was more relaxed at home, I was treated as normal than different, I was accepted, I even had less anxiety at home, I only had seizures in school in 6th grade. I notice from my childhood how most of my problems were in school than at home. That is because of academic stuff. The environment was just different.

I can’t even stop thinking about this and I have until Thursday when we go in. Perhaps I should have left Asperger’s off the questionnaire thing when my son was three when Kaiser sent us a forum to fill out about child development and they asked us about family medical history. Maybe none of this wouldn’t have happened but I am always honest and I even answered the questions honestly with the school district I thought. But at least this isn’t Kaiser that’s doing it, it’s the school district. But yes they even got a report from them saying there was no autism in him, just developmental delay and some motor delay. Even the pediatrician said the same. I think they just went with the ASD category for the IEP because they thought it’s the only way to help him so my mom wants to show them there are other ways to help him and better labels to use because teachers will look at it and see the category he is in and see him as autistic and lower their standards for him and not expect much from him. Sadly this happens with other kids too with other labels. My mom had a student who had the MR label and no one would teach him to read because they thought he was incapable. My mom could tell he was bright and thought no way in hell was this student retarded. But then of course his mother cried when she saw he wrote a story looking at the pictures and telling a story about it because she didn’t know he was illiterate, she always went with what she had been told. He had learned the sounds of the alphabet so he did his best spelling out the words and it was at the first grade level when he wrote it. My mom taught him the sounds and she wanted to prove to everyone that these kids can learn so she got pictures and took copies of them and have her students tell a story from them using a few words and this one kid with Down’s syndrome did it and his dad cried when he saw it. People at school were shocked at what these students did and took credit for it unfortunately and my mom didn’t say anything because she was only the teacher aide. But then the school wanted her back the next year because they liked what she could do with these students because she knew how to make them learn and she said she couldn’t come back because she was moving to Montana. They were all disappointed but I hope my mom told them what she did so they could try her ways.

But I am surprised she didn’t correct my own answers on the autism questionnaire test when she filled it out too. We both did it together. She also write he strips down to his underwear and they probably took that as a tactile issue. But I still wonder if all this happened because of my own diagnoses so they thought my son has it too so they saw things in him that weren’t even there. I was told he seems to get overstimulated from lot of kids in the class and the noise and that sounds exactly like me when I was a kid but I wonder if that is also a misconception they have about him. I did believe everything they told me about him and my mom told me why each one of them was bullshit. Apparently the behavior is my husband’s and I fault and mom told me she knows we both do our best.

Now I wonder if other ASD parents unintentionally get their kids mislabeled or misplaced in the IEP category when they need help? I asked my mother if we should have left Asperger’s off the questionnaire when we filled it out for Kaiser and my mom just shrugged. I don’t think she knew either if that caused all of this. But I am glad she is around or otherwise I could be screwing my kid up through education. But I am sure there are NT parents out there who screw their kids up too this way because they also trust the school system and they don’t know they should get professional opinions or call their kid’s pediatrician. Look at what happened to Parker, my mom’s student who was illiterate or what happened to my husband who had learning disabilities and brain damage. And the school district lady thought this IEP category wouldn’t affect him and my mom said “oh yes it will” and she explained that teachers will look at it and get the wrong assumptions and lower their expectations of him and not expect much from him and they will turn it into a label because she has went through it with me. I didn’t ask her if it was about the autism label or not because of my early history. She told me I did have pervasive language delay as my label for the IEP and I still got the help I needed. It’s not a IEP category and then in 6th grade and up we used Asperger’s and it went fine. She said it can be narrowed so a better label fits for my son and he can still get the right help but she doesn’t think Asperger’s would fit him for it or autism for his learning and the way he processes information. The school district people felt they needed to use ASD for it and as my mom had taught me, it’s just a label and you use them to get your kid help. But she doesn’t agree this is the way to do it. I told her this is how they do it sadly because I have read about it online.



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