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I'm Done Grieving What's Not, Now Let's See What Is


Danny Raede

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The Professionals Know Best, Right?

My name is Emma. I live in Northern Colorado and have a son and a daughter. We started with Asperger Experts about five years ago. At the time we had just gotten my son Oliver's diagnosis of Asperger's, so I said to myself "Alright. Well, first thing you do is you get ABA and you listen to what all the doctors and the teachers say." I was also a teacher, I have a a Master's in education so I thought I knew everything about kids and was approaching this from the standpoint of everything I learned in college. 

We had behavior charts set up, and I was even teaching other teachers on how to do classroom management. I was applying the things that I was teaching to other teachers at home, and none of it was working. It was just making things worse and worse. Things were falling apart. 

I think the first thing that really gave me a clue that something was different about Oliver was, he was about two years old, and we used to have this plum tree in the backyard, and it had green plums on it. We were waiting for the plums to get ripe and he kept going up and picking the plums before they were ripe, and I kept saying, "No, no, we don't do that." The more I did that, the more he'd go pick them, and so then I'd give him time outs. I did everything the way you're supposed to do. There was a positive consequence for not pulling the plums, a negative consequence for pulling them. No matter what I did, it got worse and worse. He just kept pulling all the plums. 

So I thought, "Oh my gosh, this has worked with all the students I've worked with. This has always worked. Why is this not working?" When he was old enough, we put him in preschool, and he kept getting kicked out of preschool every day. So we thought, "Is this normal that kids just get kicked out of preschool daily?" then we put him in into transitional kindergarten. The teacher there could not teach him unless I stayed there with him the entire day. I would watch him, and I'd watch the other kids in the class, and his reactions were just completely different. Like this wild animal I did not know.  One day a bell rang, and he started grabbing his ears and getting down screaming, and I thought, "Wait a minute. Maybe I should see about getting him diagnosed for Autism." That was scary to me at the time. I think it was scary because I had only ever been told that was a bad thing. 

When I was In school, we had the special ed kids that were in this little room that had all these windows around it so we could all peer in between classes and watch. Then we would volunteer and get to go work with the special kids. I liked those kids, I really did. In fact, some of them are still my friends to this day. But there was always this elitism in our school that we were the helpers and they were lucky to have us. It was so messed up when I think about it now, but at the time, that's how it seemed, and so I didn't want one of my kids to have that label. 

Then when he got that diagnosis, at first, I thought, "OK. Well, we're just going to run with it. We're going to get ABA. We're going to cure it!" So I started out with the ABA. I was immediately on top of it, but the more that I tried, the more resistance I got from my son. I also had a toddler at the time. My husband was just kind of overwhelmed with it too. 

One day in kindergarten, my son was not getting ready for school and we were stressed out, and I just completely lost it. Something snapped in my brain, and I was like, "I can't do this." So I got in my car and I just drove away. I ended up at the mental hospital, and I said, "I think I need to check in, because if I don't, I'm going to drive my car into a wall". And they're like, "Are you serious?". So I said, "Yes, I'm serious." So I stayed there for about a week, and it was so good. I'm glad I did it. It was exactly what I needed. I just needed a break from everything. 

The Turning Point

The turning point for me was one night when we had music therapy at the hospital, and I asked the therapist to play a Beautiful Boy by John Lennon, which was a song I used to sing to Oliver when he was an infant. All the pain and the stress and the grieving and everything just came out all at once. When she sang that song, I just cried and cried and cried, because I realized I had all these expectations, and first I needed to heal them in myself. I think that this is true for any parent, not just a parent of a kid with a special needs, but any parent needs to grieve what they expected of their kid versus the reality of what is. Once I grieved that, it wasn't like it all healed at once, but it was a huge turning point. 

I got back to my life, and I said, "OK, I'm done grieving what's not, now let's see what is." So we kept doing the ABA for a while, and I started to notice that ABA was all about trying to fix Oliver and it was really bothering me. I kept saying, "But what about the things that are right?" Because there are gifts that come with this. I want to foster the gifts. I remember talking to the ABA lady, and she said, "Well, we're really about fixing the things that are wrong." I asked, what can we do to really help him to harness the things that are special that he has that nobody else has because he has autism? She just had no answer for me. 

I was watching TED Talks one night and I found Jacob Barnett's TED Talk, and I think that was what switched me to thinking, "OK, well, what if all the things I thought Autism was, what if I threw that out and started from scratch?" So I contacted Jacob Barnett's mom, and she talked to me for an hour. She said, "Why don't you just consider putting ABA on hold for a little bit, and try working with him on some of his strengths?"

By this time Oliver, who was now in first grade, kept getting restrained at school, and at the time, I did not realize what they were doing was so illegal or so terrible. I just thought that that was what schools did with kids that weren't cooperating. They were at a point where they wanted to move him into a special class, and I said, no, I want to home school him. So I pulled him out and home schooled him.

That's when something changed in my mind of that elitism I had learned in school about how we were the good kids and we were helping these poor little autistic, or otherwise challenged kids. It was actually the other way around, that I needed them, and that they had so much that they knew that I didn't. So I got past that elitism, and got over my own ego and said, "I need to start from scratch, throw out what I thought I knew, and start over." I started just asking more questions, and that's when things started to change. I stopped looking at the way things are supposed to be, and started looking at what is, and what could be, and what the gifts are in all of it. And I realized my son has gifts that I never dreamed that my kid could have. It's really cool! The way he's able to work on computers, and the things that he comes up with that are just totally out of the box. 

Note: This is an excerpt from our book "Navigating The System: Big Mistakes & New Perspectives". Get the whole book here.

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Wow. Spot on! Thank you for taking the time to share this. It is a good reminder, because as our children are growing into adulthood, and maybe not hitting the typical milestones that all of our friend's children are hitting, we need to grieve, but then look for what is and what can be. 

 

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Melody Lisa McGuirk

Posted

Wow, you must have a lot of money to stay in ABA and check yourself into a mental hospital on your own.

 

Didn’t take us long to figure out ABA was staffed by min wage newbies who just pushed papers around and charged us past what our ins paid by ALOT, and we had good ins.

 

No sure where you are, but in CA, Star of CA seems to be just a money making machine w what they get from ins and parents, didn’t help our child one bit. The first sign was they wanted us to sign a long term contract for them to provide service.

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I think one of the important things is one size does not fit all. Although ABA therapy can be effective for some it can be soul destroying for others. The concept of "fixing" the child seems to be so prevelant.  We came to realize that accepting and loving our son for who he is was the best gift we could give him. We have tried to provide a myriad of experiences to enhance his life and enable him to be happy and reach his potential. 

 

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lscbydesign

Posted

My Aspie is now 20, a college sophomore, living in campus and double majoring in astrophysics and philosophy. We are so proud of him and the man he is becoming. But to get to this point was a long, long road. One of the biggest things that helped along the way though was realizing he wasn’t “broken”.  When my son was first diagnosed just before his third birthday I was devastated. I had no experience with any special needs child and didn’t know how I was going to cope with what seemed his overwhelming needs. But my husband said words I have never, ever forgotten, “Jack was created with a purpose. God didn’t look at him and say, “Darn! Screwed up this one. Let’s give him to the Smiths and try again.” My husband fully believed that Jack was designed and given to our family for a reason. Yes, he often behaved and said things in ways that were not socially acceptable and we had to deal with that, but I learned that just because he and I came at things from completely different viewpoints didn’t mean I was always right and he needed to be fixed. Some days were/are harder than others but overall I wouldn’t trade them, or change Jack, for anything. 

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It is comforting to see others who experienced what I have, as well. For my son Evan, it was around 2 that we noticed something was unusual and it went from there. It progressed and he started talking about being dead and 6 feet under when he was about 5. My son has been through the ringer and has multiple stays at the mental hospital, one for a reaction to his meds (and he was there to get off of it). My deepest regret has been using meds, but there were reasons why we did it that made sense at the time. It's been a roller coaster that we are almost getting off now. I can see the ASD come out and all that was masked by the meds is surfacing. Now, we need to find help to address his issues with frustration and processing. I wish I would've taken him off meds 5 years ago. The looping is enough to make you go bonkers. I struggle finding resources to help him, as most "therapy" doesn't focus on what he needs for asperger's. I'm at a loss and he needs therapy, but we can't find anyone that is good at it. Psychiatry is useless and all they do is write scripts. Marcus dropped him and pulled the rug from under him year ago. I hate that place. We waiting a long time and went through hell to get in there for help. I should never have trusted them or put faith they would do so. It breaks my heart what that boy has been put through. There are programs opening up for Aspy kids now, but they are for younger kids than he. I want him to go to college, he wants to go to college, but we have no idea where he could go to get an education in an environment in which he could thrive in studies. I don't want to set him up to fail, he's concerned and doesn't want to leave home and all he focuses on is how much it costs (to the penny). Bless everyone and God did send us these children as a gift. My son is a gift and he will do amazing things when he can clear the spinning in his brain and calm.

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ChrisinATL:

On 10/17/2020 at 9:22 AM, chrisinATL said:

It is comforting to see others who experienced what I have, as well. For my son Evan, it was around 2 that we noticed something was unusual and it went from there. It progressed and he started talking about being dead and 6 feet under when he was about 5. My son has been through the ringer and has multiple stays at the mental hospital, one for a reaction to his meds (and he was there to get off of it). My deepest regret has been using meds, but there were reasons why we did it that made sense at the time. It's been a roller coaster that we are almost getting off now. I can see the ASD come out and all that was masked by the meds is surfacing. Now, we need to find help to address his issues with frustration and processing. I wish I would've taken him off meds 5 years ago. The looping is enough to make you go bonkers. I struggle finding resources to help him, as most "therapy" doesn't focus on what he needs for asperger's. I'm at a loss and he needs therapy, but we can't find anyone that is good at it. Psychiatry is useless and all they do is write scripts. Marcus dropped him and pulled the rug from under him year ago. I hate that place. We waiting a long time and went through hell to get in there for help. I should never have trusted them or put faith they would do so. It breaks my heart what that boy has been put through. There are programs opening up for Aspy kids now, but they are for younger kids than he. I want him to go to college, he wants to go to college, but we have no idea where he could go to get an education in an environment in which he could thrive in studies. I don't want to set him up to fail, he's concerned and doesn't want to leave home and all he focuses on is how much it costs (to the penny). Bless everyone and God did send us these children as a gift. My son is a gift and he will do amazing things when he can clear the spinning in his brain and calm.

ChrisinATL

How old is Evan? I just joined this group a few days ago and I’m trying to search out some parents with older adults. 
 

My daughter is 40 and dxd at 14. She has been on every Med they’ve it seems! Currently she has gone off of all meds cold turkey X2 and we are getting a little desperate. i want find out if their are others with older adults who have paved the way with all our blood, sweat and tears.

 

I might get in touch with Danny (I think he’s the head AE) and see if he can help. 

CMarie

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