Four years ago in October was when Miles was diagnosed with Autism Spectrum Disorder. He was 4 and a half at the time and with that diagnosis it helped open up some possibilities for therapy. One of those therapies being ABA or Applied Behavioral Analysis. ABA is designed to reward desired behaviors and change unwanted behaviors by rewarding wanted behaviors. We were able to get Miles is right away and he started right after Thanksgiving. I remember because I did all my Christmas shopping that year while he was at therapy and Avery was a school.
When he started therapy was 2 hours a day for 5 days a week. He also had pre-school 4 days a week for 3 hours and speech therapy on Fridays for 30 mins. It was a lot but it was going well. The next year he went to full day Kindergarten so I changed the schedule for after school and wanted to have him go three days a week because the family went to the recreation center Tuesday and Thursday nights and I didn't want to change that. So then he was doing 2 hours for 3 days a week, full day Kindergarten and 45min speech therapy Wednesday mornings. Yes, a very busy kiddo, but he was handling it great.
Next move was the therapy place changing the Friday session to only an hour. This was because they didn't want the employees there of Friday later than 5:30p.m. Sure. Then later the sessions were switched to 1 and a half hours with no explanation and them asking ME why I couldn't make the Friday session until 6:00PM. Monday, Wednesday and Friday from 4:30 - 6, has been the schedule for over a year now. This includes the summer, even though I expressed the want to increase hours.
SO this brings me to present day. We have only 3 more sessions and then there will be no more ABA therapy. 4 years after he started. Why? Because I refused to be bullied into a "mandatory 10 hours per week" schedule. A schedule that would require me to pick up my child every day from school 30mins early, or bring him an hour late, or have him miss 3 hours of school.... EVERY DAY! I said no. Miles is doing great in school. They work on the same things ABA was working on. And I couldn't do. Why would I take my child out of school so they could work on him dressing himself and washing hands for 2 hours every day? That is what he was working on. He head clinician even told me they had no behavior goals to work on and that they would just work on functional things.... um no. Not to mention how much I pay out of pocket for ABA. I can make my child wash his hands for two hours for free... thank you very much.
It was really hard for me to decide. Here was my internal struggle:
I really don't want to drive there every f* day. 30mins there and 30 mins home. I don't get home until 6:30 every day three days out of the week already and I hate it. But people commute farther to work every day. But I'm not going to work... I don't get paid... actually I pay them... what was it when I figured it out with the case worker? Oh, yeah more than $900.00 a month... sh*t.
Wait though, this isn't about me. This is about my child. Does he need this therapy? Is it worth it to him? She said they don't have any ideas and we don't have any ideas about behaviors to work on. And if I do find a behavior and ask them they just say "That's odd, ok we will watch it" and then they just track how many times he does it with no real solution... or "how do we stop him from doing this?" .... I don't f* know, how bout you pay me behaviorist!
Also how can they tell me mandatory hours and tell my friends family "we have no hours"? I call BS.
See it was making me crazy.
Monday, November 20, 2017
Wednesday, September 20, 2017
Being a mom is tough
It has been awhile since I have written. I have a lot to say so I decided to do it this way.
Being a mom is tough. It helps when you have a village to help you. You know, friends neighbors, teachers ect. When you have a child with special needs your village grows. It can be a great and wonderful thing. More people to support you, more people to help your child grow, more people who help you be excited about the small things. However, the more people involved, the more it can seem overwhelming, the phrase "too many cooks in the kitchen" comes to mind.
Even with this expanded village the child's parents have the first and final say on all regards to the child. This is where my rant begins.
Miles has been using a tablet with a communication program for about 1½ years now (I think my math is correct). He is still learning how to uses it because sometimes skills can take him awhile to learn (plus he is stubborn). It was decided to get it so he could be on the same communication page with school, home and all this therapy. For most things we are on the same page and it great.
The problem is ABA therapy (Applied Behavioral Analysis). The person who is in charge of his programs has be butting heads with me and the speech therapist for months now. She thinks the talker should be set up a certain way, different than how it is set up EVERYWHERE else. She thinks she is making it easier for him.... She agrees everything should be the same and uniform but HER way.
THIS IS MY CHILD'S VOICE!!!!!!!
Her actions, her insisting, and now and email she sent to speech therapy really has me sitting on the line to take me child out. She told the therapist she wanted the talker a certain way, that she wanted speech to do it the same way and for them to tell me to do it that way too. HELL NO! That is not how this works. (P.S. I just had to stop typing to answer a call from ABA, he session is cancelled tonight, oh well)
The best attitude to have for a special needs child, or really any child, is knowing what challenges they have, but focussing on the stuff they are capable of. Most of Miles' village believe he is capable of so much, more than he shows us. I love them for that. This is why I am frustrated with ABA. The way she wants the talker is like her telling me that she doesn't believe in his ability to communicate. That she is focused on what parts he doesn't use instead of what he does use.
Being a mom is tough. It helps when you have a village to help you. You know, friends neighbors, teachers ect. When you have a child with special needs your village grows. It can be a great and wonderful thing. More people to support you, more people to help your child grow, more people who help you be excited about the small things. However, the more people involved, the more it can seem overwhelming, the phrase "too many cooks in the kitchen" comes to mind.
Even with this expanded village the child's parents have the first and final say on all regards to the child. This is where my rant begins.
Miles has been using a tablet with a communication program for about 1½ years now (I think my math is correct). He is still learning how to uses it because sometimes skills can take him awhile to learn (plus he is stubborn). It was decided to get it so he could be on the same communication page with school, home and all this therapy. For most things we are on the same page and it great.
The problem is ABA therapy (Applied Behavioral Analysis). The person who is in charge of his programs has be butting heads with me and the speech therapist for months now. She thinks the talker should be set up a certain way, different than how it is set up EVERYWHERE else. She thinks she is making it easier for him.... She agrees everything should be the same and uniform but HER way.
THIS IS MY CHILD'S VOICE!!!!!!!
Her actions, her insisting, and now and email she sent to speech therapy really has me sitting on the line to take me child out. She told the therapist she wanted the talker a certain way, that she wanted speech to do it the same way and for them to tell me to do it that way too. HELL NO! That is not how this works. (P.S. I just had to stop typing to answer a call from ABA, he session is cancelled tonight, oh well)
The best attitude to have for a special needs child, or really any child, is knowing what challenges they have, but focussing on the stuff they are capable of. Most of Miles' village believe he is capable of so much, more than he shows us. I love them for that. This is why I am frustrated with ABA. The way she wants the talker is like her telling me that she doesn't believe in his ability to communicate. That she is focused on what parts he doesn't use instead of what he does use.
Subscribe to:
Posts (Atom)