Friday, February 17, 2017

Two Paths; Decisions

Its Friday and instead of being excited about a long weekend, I sit here within my thoughts filled with concern and worry. Yesterday I was supposed to go observe Autumn at school and this is something that we’ve been planning since before Winter break back in December. I was looking forward to seeing her learn and also hoping to put my nerves aside regarding her overall classroom environment. Instead, I was turned away five minutes into being at the school while attending a PTO meeting that I wouldn’t have attended if I knew I wasn’t going to observe her that day. Needless to say, this upset me immensely.
Later on, I received a phone call from our case manager and due to so much anger and built-up emotions from everything that’s transpired throughout the past year, I took out my anger on her and vented to her about everything. I vented about the bus and how now, a year later, Autumn keeps bringing up the bus (no hit bus, no like bus, no….) and still covers her ears and eyes whenever she sees a small bus as this is a sign of PTSD and competency. I reminded her how I could’ve sued the district over this, but chose not to for the sake of loyalty and not wanting to make waves, which I realize that was probably a big mistake on my end.

I vented about how it feels like I have to jump through hoops to even see my own child at school and that I can observe her anytime, but wanted to give them the courtesy of planning an observation instead of just showing up and I feel like I don’t get the respect I deserve as Autumn’s mom. To turn me away and assume that I can come in another day and time and for this to be going on now for weeks is wrong. Imagine if I had a full-time job or had clients I had to cancel so that I could go and observe her and then they keep canceling on me. It is wrong. It angers me and I have every right to feel how I do.
I vented about the lack of consent I received when it pertained to giving my child candy as a reinforcer, how ABA is damaging to her personality, how she’s not someone that needs to be fixed, how our school district is still in the dark ages when it pertains to inclusion and what ever happened to inclusive story time? I went on and on and on about all of the things that have bothered me and I’ve guilty sat back and agreed with the CST and allowed them to pacify and dismiss my and Autumn’s concerns in order to give them a chance because I was afraid and didn’t want to make waves and just wanted a place where Autumn was safe and felt wanted. I provided reinforcers to help build a rapport with the new aides in her classroom, I made visuals, followed their protocol, make social stories, etc., in order to help Autumn overcome some of her anxiety and obstacles. I’ve sat in meetings, was okay with last-minute changes and cancelations, but yesterday, yesterday I was “enough is enough”. I completely lost it and maybe it was for the best.

To catch some of you up on things, Autumn has been experiencing a lot of anxiety about going to the bathroom at school mainly because if she goes and makes a mess, it causes her such stress. Because of this stress and her coming home a few weeks ago in complete tears, I requested a meeting and learned that she can perform bathroom duties at school, but they were willing to accommodate with helping her if she needed assistance. I provided wipes and read the social story daily to help Autumn become accustomed to this all and we still have days where she comes home and she wasn’t fully cleaned or had skin sensitivity because she wasn’t wiping herself correctly. Almost a month later, she’s having bathroom issues and those issues have turned into such extreme anxiety that she doesn’t want to go to school. Every single morning it’s a fight to get her to school. She has a visual schedule she sees daily and she will hide the school visual daily. She cries every morning on our way into school saying the same script “No school, I don’t like school, stay home, please, stay home with mommy… I don’t like so-and-so…” and I will redirect, change subjects, play music she likes to get her mind off of school refusal. I was told that Autumn does “great” and she “adjusts well”, but Autumn needs a lot of sensory input from me after a long day at school and this is daily.
I know I can go on and on and on, but I don’t want to sit here and bash her classroom or the environment or say it’s bad for all of the kids, but what I am going to say next is how I feel and whether some of you agree or disagree, that’s solely your right.

As Autumn’s mom and her advocate, I don’t have much hope in things getting better with Autumn’s educational journey throughout our school district. I call her the lonely swan in a sea full of ducklings as she’s the only female I know who has an autism diagnosis within her school, thus the school lacks the education about female autistics and what their needs are, which differ dramatically compared to their male autistic peers. The school primarily uses ABA therapy as a form of treatment methodology and I am not a fan of ABA. Never really have been and the only reason why I ever even thought of pursing a BCBA was to empower parents not to look at this as the saving grace for their child. I was going to make it my own, but after registering to take my first BCBA course and realizing how smug the field truly is, I immediately withdrew and realize I can do what I want to do for families with my current background and expertise as a person-centered therapist. To me, ABA therapy is glorified dog training and implemented by anyone who can pass a background check. Let that one sink in. We have aides who work with our kids who don’t know anything about autism and how it varies upon each individual. They don’t have enough training because training equals more qualified candidates equals having to pay them more. Now imagine if our gen ed teachers were not trained or didn’t go to college to obtain their degrees? Imagine the uproar parents would have if their child’s teacher wasn’t qualified, but its okay to stick aides in a classroom to perform one on one instruction with a special needs child who needs more direction and these aides only have maybe several hours of training and have to rely on a BCBA or the teacher to implement strategies.

Also, ABA teaches parents that something is wrong with our kids and they need to be changed instead of just embracing them and their behaviors. ABA dismisses inclusion completely. It’s a form of therapy that molds autistics to “blend in” and be neurotypical. Well I have some news for all of you, Autistics will never be neurotypical no matter how much therapy and schooling a child receives. Stop treating autism like it’s a curable disease. I am so sick and tired of this concept. I am also so sick and tired of special education students being pushed to the brink and yet their same-aged peers can act and behave similarly and that’s okay when they do, but not the special needs child. When we continue to push and push and push our kids, its going to backfire. Trust me on this one.

I am also super ashamed at myself for believing at one time that ABA would be good for my daughter and for having that “woe is me/pity me” because I have an autistic child. I look back at where I started on my blog three years ago and where I am now and the growth that has taken place because it took me too long to realize that my daughter isn’t broken or less than. That she is absolutely perfect the way she is and I am completely angry at myself for giving consent and allowing the school to implement ABA on my daughter and that I pacified her own needs and I didn’t listen to her like I am doing now. That I didn’t presume competence and talked about her with her standing right there and didn’t give her the respect and decency she deserves. I am ashamed for not telling the school No on many different occasions when instead of trying to be the nice girl, I should’ve raised my voice for the sake of Autumn. I hope someday Autumn will forgive my mistakes and know that I truly didn’t know better, but I do now.

So here I am at a crossroad. I see one path of her education and me fighting for her rights and the possibility of Out of District placement because I’m not happy with her classroom, the curriculum and the lack of self-help/adaptive and social/emotional opportunities. I see another path of what sounds like I’m taking the easy way out and just completely pulling her out of public education and me homeschooling her while supplementing with her private therapies (because I never saw the school responsible for providing therapy).

Yes, me, the fighter wanting to completely pull out of public education, which means forfeiting Autumn’s right to FAPE and services to homeschool her. However, homeschooling would completely eliminate the school stress that’s been going on and I know for me, it would make me breathe much easier and I can rest assured at night. Plus, Autumn would be happier. Lastly, I would finally have the freedom to teach my daughter and to spend quality time together that I feel like we’ve lost due to being consumed with additional therapies and school for the past four years.

I know what some may be thinking, “don’t give up on the school, make them give her the education she deserves, etc.,” I have my rebuttal to this all, but I know my child best and what will work for her. She needs love and consistency. She needs to work and focus on her strengths. She needs real-life opportunities to explore, not opportunities within a school setting that’s tailored and may be at times artificial and right now, not inclusive. Most importantly, I want her learning to be child driven and not ABA, fault-finding driven, which will only continue to contribute more anxiety and possible depression as she gets older.

Reading and learning about older Autistic Females has been a game-changer for me as well. I have learned that the things we are programed to believe is best for autistics, isn’t always the case. For autistic females, that forced socialization in artificial settings caused more harm than good and took years to overcome the stressors and obstacles that came with being thrown into difficult situations that only decreased their self-esteem. I don’t want the same thing to happen to Autumn.

I highly doubt that the school will stop implementing ABA. I highly doubt that they will be willing accommodate my wants and wishes for Autumn considering I do feel overlooked and pacified and/or my needs are addressed in the short-term, but not long-term.
Homeschooling Autumn would be a HUGE undertaking and it isn’t something I just randomly thought about doing. This has been on my mind for years now, I just didn’t have the confidence or support to implement it.

I know that I have a business that I promote myself a Special Needs Advocate and I am. Regardless of the decisions I make for my family, I will never stop advocating for other special needs families whose situations may differ from my own child’s. Right now, this is about doing what’s best for my child and my family.

I have some decisions to make….

1 comment:

  1. Did you ever get this resolved and go do the evaluation? I am so sorry it has been such a rough year for autumn and you. You are such a great provider for her trish! <3