Skip to main content

eSpecially Parents September Edition: Paula's Story

School has been nothing but a bad experience for us.  You have teachers that have no idea how to work with a child with autism, (although it's supposed to be an autism class).  Most aides that are in the class don't have much of a clue either and most have very minimal training in how to address the behaviors and teach. 

We've experienced school for Tye in 3 different states, FL, NY and NC.  It's been awful in all those states.  In NY, they did offer more services, which I had to fight to get with a Special Ed lawyer's help.  He did get really good after school services, like ABA and a behavioral consultant plus additional ST and OT. 

Other children in the same school district didn't receive the same level of services because school districts don't give anything without a fight.  The public school system in NY was very poor.  If there were openings in the private school setting the district would have sent him there, but of course there were no openings.  At least he got the after school services where he was able to learn because the people were actually qualified and new what they were doing.

I've found that in order to get your child the education they should have and deserve you can't get it without constantly being on top of things and learning how to work with your child yourself. When Tye was first diagnosed with autism when he was 2, we spent $35,000 in one year, to have him do ABA therapy with staff that were extremely knowledgeable.  I was also trained in how to teach him myself to try to keep costs down and to help Tye.

He's 15 years old now.  It gets so tiring and frustrating to always have to be on top of school and trying to be sure he is well taken care of.  He's learned nothing at all in the public school setting.  So sad, but true.  He's only been able to learn when he was home schooled when he was younger and the after school services in NY. 

My husband and I despise the school he goes to.  We always hope for staff that know what they are doing and are capable of teaching him.  In NC they have to teach according to grade level regardless of the child's level of understanding.  He's in 10th grade learning about 10th grade material.  He can't read, write, do math and has major issues with communication.  I don't know why they can't teach him things that are relevant to him, functional skills, independent skills, leisure skills, social skills, etc, etc. 

If we could afford to home school him we would in a heartbeat.  He has so much more potential than what they are pushing him towards.  IEP goals are only worked on for a very short time in the day since they have to teach the grade level academics first. 

If only we had enough money to get him the level of qualified people working with him teaching him things he really needs to know in life.  Not about the layers of the earth or about paramecium's or other irrelevant material. 


First time reader for Especially Parents Series? Catch up here.

Comments

Popular posts from this blog

Catching up with Ben

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he's can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru