Hurdle

Here’s the deal. I am an optimist. I really do believe that everything works out somehow. I have my moments of negativity like anyone else, but I try not to live there. Lately, I’ve been living there. Today has to be the day it turns around. I have one big thing standing in my way.

My seven and three quarters year old son.

He is going through this “I am going to challenge and attempt to negotiate everything that my Mom says” thing. Sure, he has always been a negotiator and he has always challenged convention. He has Asperger’s. That’s par for the course. The difference lately is that he is doing it with a very nasty attitude, a mean look on his face, and with a will of iron. I am exhausted. I am tense. And I am finding myself being really inflexible and drill sergeant-like, not because I consciously want to behave that way, but because I am so worn out. I just want him to back off the attitude. Be nice. Agree sometimes.

I know what this is about. We started ABA therapy at the end of August and the honeymoon period is over. He loves Miss N, his therapist, but he doesn’t love when she leaves and I expect the same things that she does. He doesn’t love that I am using the same techniques and language that she does. He keeps saying that he doesn’t love me.

Now, I know better than to allow myself to sink into self pity and wallow in the idea that my son doesn’t love me anymore. Logically, I know that he is acting out, trying to gain some control. The thing is that he was controlling the house before Miss N. His meltdowns would sometimes last an hour and who was paying attention to Hammy while we were absorbed in Wolfie’s meltdown? No one. It had to change. We had to find some balance.

Life in our house is better in so many ways since we started ABA. Hammy is happier, he is getting more attention and he isn’t mimicking Wolfie’s challenging behavior in an attempt to get our attention. Eliot and I are parenting on the same page for the most part. We are leaving our own emotions out of it and helping Wolfie turn his behavior around on his own. Wolfie is accomplishing so many things that are positive. If it weren’t for that pesky negativity, life would be pretty great.

I signed up to volunteer in Wolfie’s classroom this year. He and I talked about how I would be coming to school and he said he was excited for me to come. When I got there, he was incredibly rude to me. He refused to cooperate with anything I was asking him to do, which by the way, was simply to come and sit down at the reading table with me and two other kids. Not a huge request. And not something that should be difficult for him. Once he did finally sit down he hit me on the arm and growled at me because I agreed to let another child begin the reading. I did this because I couldn’t reward his behavior thus far, and I explained that this little girl had been waiting patiently to start while Wolfie was refusing to join.

I tried so many times to change the negative to positive. At the end of the reading group, which he left early because he didn’t feel like sitting next to me, I went over to his desk and told him I loved him. I asked him why he was so angry. He didn’t like that I was bossing him around, he said. I asked him if he wanted to share anything with me in his desk before I left. I told him we could have a few minutes where he could decide what to share with me. He told me that everything in his desk was for school and it was P-R-I-V-A-T-E (he actually spelled it out) for him and not for Mom. That hurt.

I left. As I was walking out the kids had gone to lunch recess and his teacher was walking down the hall toward me. She clearly felt bad about how Wolfie was treating me. I am sure it was sad to watch. She told me that he never had acted like that in class before toward her. Ouch.

Don’t get me wrong, I am glad that he has never acted that way toward her. I am glad that he saves his best behavior for school. I am just sad that he isn’t happier when I am there. I know he wants me there, but he is confused when school and home cross paths. It makes him uncomfortable. Just like ABA makes him uncomfortable when Miss N isn’t around.

I know that all of this will work itself out. We have been through this before and it was hard, and then somehow it became easier. It will get better. We will find a way back to the positive. That is my mantra for today.

Defeated

“I feel like such a failure,” Wolfie said to me this afternoon, crying giant tears following a meltdown after school. It is in these moments that I feel like I have failed him. What am I doing sending him to school each day when mostly, it makes him feel like this? Really, what am I doing?

This thought goes through my head more often than I’d like.  I want so badly to take him out of school and home school him, but would that be better? Could I provide the learning environment that he needs? Is it fair to have Hammy in a school and Wolfie at home? Could I handle having them both at home all the time? Would I be stunting their social growth?

The trouble with all these questions is that it depends on who you ask. There is no right answer. It isn’t black and white. There is so much grey. I am not comfortable in the grey. When I really examine how I feel I have this horrible feeling in the pit of my stomach that I will regret this public school decision. It comes to the fore front of my mind like someone punching me in the face when I hear my 7 year old son tell me he feels like a failure.

I want to celebrate the good things about my children. I want to praise them for and give them opportunities to utilize their strengths.  I am tired of hearing that everyone is special and that in order to be fair, blah, blah, blah. Our public schools are set up for the most common denominator. They aren’t set up for the uncommon. Individual strengths are traded in for collaborative group strength. What if your strength is one that doesn’t mesh well with the group? What if the group can use the strength, but you aren’t comfortable with the collaboration? Is it still valuable? The answer lies in the individual teacher and how he or she chooses to run the classroom.

This is precisely the problem with school. It is one transition after another and very little consistency. One teacher might offer many chances and another only gives one. One teacher may celebrate the children doing the right thing, and another places the focus on what you’ve done wrong. To a typical child this is confusing. To my aspie child it is maddening, more than frustrating.

He participates in the gifted program at his school and at the end of each day there is a sheet of paper to be sent home outlining the lesson and activity for that day. At the bottom of the page is an area for the children to rate how well they participated, listened, used their time, cooperated, and were committed to the task. The choices are 1, needs improvement, or 2, meets expectations. He gave himself 1 1/2 most of the time and a 1 3/4 for cooperation. The teacher gave him all 1’s. This is why he was so upset. He thought he had tried really hard, but saw from his scores for the day that it wasn’t enough. He said he felt like it was never enough. He said he felt like quitting.

Sharing Secrets

“Hey, Wolfie, I want to tell you a secret.” Hammy said this to Wolfie yesterday afternoon right after Miss. N arrived. Miss. N is our ABA therapist and it was her first day. Wolfie didn’t feel like hearing a secret so I asked Hammy to tell me.

“I don’t want to be violent or disrespectful while Miss. N is at our house,” he said in my ear. Little sweetie. He was remembering the time a few weeks ago that Miss. N came to have a get to know each other play date and things between him and Wolfie went sour. There was some kicking, hitting and a lot of back talk. He was embarrassed about that. I told him I thought that was something he could say out loud and I encouraged Wolfie to listen. Hammy said it and Wolfie agreed with him.

Miss. N said she appreciated that both of them were having such positive attitudes. I’m sure you can guess where the story is going.

Things were going fine until Wolfie earned 8 points and was given the opportunity to pick a choice out of the box. The box is full of special items that the kids will get to choose from when they earn 8 points. Once the playtime with the chosen item is over, it goes back into the box until points are earned again. The items in the box aren’t to be played with outside of when Miss. N is here.

This was explained to the boys several times prior to letting them see the box. Everyone said that they understood the rules.

I bought all the items in the box with both boys in mind. These are things that I knew they would be interested in, but that I didn’t want to give them access to all the time mainly because they are messy or have the potential to get messy or out of hand. In short, adult attention is pretty necessary.

Wolfie chose the fountain pen. He LOVES pens. He loves to make signs and he especially loves to make signs with cool pens. The pen is cool. Miss. N made signs with him and challenged him a little with how he makes the signs. He handled it well and earned a few more points. Then it came time to move on and so the pen had to go back into the box.

This is when things got ugly. I have seen things get ugly like this before, but there was a major difference this time. I had a professional there with me who was supportive and kind. She coached me in how to handle the meltdown and together we got him to calm down. It was hard. And it was heartbreaking. But at the same time, not. It’s weird, I think I have lived with for so long and become used to these meltdowns so much that the sadness has been squeezed out of me and in it’s place is resolve and determination.

I know that Wolfie can learn to control himself. I know he can do it without medicine. I know he can do it because we love him and are committed to helping him no matter what.

I almost think that the absence of my sadness is what makes things work when they do. He had to calm himself down. And after about 20 minutes he did.

I am a firm believer in at home therapy. There is so much good that comes of it. I am involved and learning, as is the rest of the family. This therapy isn’t just for Wolfie. Hammy, Eliot and I will all benefit individually and collectively. I believe that doing this as a family will strengthen us and solidify the relationship that Hammy and Wolfie have with one another.

“I think I have something that will help Wolfie!” Hammy was walking around on his toes with a piece of paper in his hand and a crayon. He looked excited and he was talking with urgency. He felt bad that his brother was having such a hard time and he wanted it to stop. He had written him a note and he wanted to slide it under the door to Wolfie. I told him I wanted to read it first. It said, “You are bad.” Miss. N looked at it and said, “Maybe there is something positive you could say to Wolfie instead.” They decided on something together and he wrote it down.

“I hope you get calm,” the note said. He slid it under the door. There was a brief silence followed by a a request for a pen. Wolfie sent the note back under the door. I turned it over and read his writing. “Thank you, Hammy,” was what it said.

It was one of the sweetest things I have ever witnessed.

It is no secret that life is challenging sometimes in our house. We have shared stories in hopes that it will help another family and we have sought help from our families and close friends who understand. But there is something about having someone who doesn’t know the back story witness what happened yesterday. It made me feel lighter. She has no emotional ties to Wolfie or to me, yet she was empathetic and offered no judgement. She had the ability to see what none of us on the inside can see because we are so attached and so in love with our little boy.

I am glad that the big meltdown happened on the first day of therapy. Maybe now, we can begin to make some headway. I know it isn’t the last big meltdown we’ll ever see, but it is a step in the right direction and that is how you start. Baby steps.

Following The Leader

“I want to quit REACH. I’m just a quitter and I’m not going back.” This is what Wolfie said to me when I picked him up from school. I knew something wasn’t right when I saw his face as he walked toward me after school. He had that look. The one where he was trying not to cry and not to smile. He was confused and embarrassed and he didn’t want to talk about it.

I just gave him a hug and told him we didn’t have to talk about it until he was ready. Poor guy. There is nothing that I dislike more than the idea that I send him off everyday to a place where he feels misunderstood the majority of the time. It is heartbreaking and frustrating to see such an able little boy with so much to offer struggling because he can’t conform socially.

Rules are hard. People constantly telling him what to do about trivial stuff clouds what is important. Wolfie’s greatest assets are his inventive ideas about systems and his knowledge about technology. His greatest asset socially is that he is outgoing and wants to engage with you. He wants to share his knowledge. How I wish there was a school that understood this, embraced it and encouraged it.

REACH is the gifted program at his school. He isn’t actually “in” the program, but is being allowed to audit because he is clearly gifted, but had a hard time proving it on the various tests he was given. I appreciate that he is being allowed to audit, but I find myself wondering if it is worth it.

It looks like, for Wolfie, REACH is more of the same on a more intense level for one day, three times in that day, once a week. There are a lot of transitions over the course of the day and he misses much of what happens in the regular classroom. The program is designed for kids who enjoy being challenged and thrive working and collaborating as a small group. The challenges are provided by the teacher and do not necessarily embody anything that Wolfie is interested in or motivated by.

This is hard for Wolfie. He has specific interests and would like nothing more than to explore those more to see where they lead. And why shouldn’t he? Why is our society so obsessed with group stuff? Albert Einstein wouldn’t have been the mathematician that he was if he was forced to participate in small group collaboration all the time. He probably holed up somewhere and immersed himself in his own little world of numbers and symbols. Was that expected? No, absolutely not. But aren’t we glad he did it?

I am not saying that this is what I want for Wolfie, but a little balance would be nice. Some acknowledgment on the part of the system that he doesn’t fit into their educational plan without it causing emotional pain and distress because he DOESN’T GET IT. The system needs to make room for him and his ideas. It needs to be soft and allow for his shape. He is driven by his ideas as we all are and he doesn’t come equipped with the social protocol filter that makes us all give a shit what someone else thinks. He has to learn that. And he is doing his part. He is trying.

I think the worst part of all of it is that he does have the capacity to know when someone isn’t happy with him. Today he didn’t feel that anyone was happy with him and he really didn’t know why.

He forgets how important it is to show the people around him that he is paying attention in the conventional way. He needs reminders of that because it doesn’t come naturally for him. If he can’t focus sitting in his chair then he gets up and moves around. He is still listening and in a lot of cases he hears better when he does this.

But it isn’t expected behavior to just get up in the middle of group work or when everyone is listening to the teacher from their seats. When he does this, it is distracting for the other students and for the teacher. Suddenly he is being reprimanded and he really doesn’t understand why. He wasn’t trying to be disruptive. He just needed to move a little. He feels misunderstood. He is constantly being asked to modify, to do it differently than his instincts tell him. No one is honoring WHO HE IS. What about what he needs to be successful?

“I want to quit REACH because it’s too hard. I don’t know what I did wrong today and Mrs. B raised her voice at me when she told me to go back to class.”  He started telling me about this again at bedtime. I questioned whether she really raised her voice. He said she did a little bit.

“It’s like she doesn’t understand that I have Asperger’s. And, anyway, I want to keep that private.” I reminded him that when we talk about his Asperger’s we are helping people understand why he does some of the things he does and that Asperger’s is just a difference. It isn’t anything to be embarrassed about.

We did a presentation last year to his first grade class about Asperger’s and what it means for him. Wolfie created the whole thing in Power Point and we went together and he presented it. The class loved it. They asked questions and made connections. It was one of the proudest days for him. From that point on, things changed for him in first grade. The kids made room for him and seemed to understand him better.

“I think we need to ask Mrs. N to forward that presentation to Mrs. B and Mrs. S so they can understand me better.” I love the way his mind works. Mrs. N is his first grade teacher, Mrs. B teaches REACH, and Mrs. S is is second grade teacher. I told him that we should create a new presentation or add on to the one we have and present it again. He liked my idea.

So the whole mess of an afternoon today was caused by Wolfie challenging Mrs. B and getting up from his seat to wander around the classroom. Maybe he was bored? Maybe he was uncomfortable in his chair? Maybe he listens better when he is walking? Either way, concessions should be made for different learning styles. Give him something to do that has meaning to him. Use what he has accomplished and build on it. His participation will be different from that of the other kids. That is a guarantee. 

He isn’t a follower of rules or of anyone just because you said. I have had to learn this over and over again about him. Really, this is true about everyone. No one likes to be told what to do. We are all unique individuals who have something to bring to the table. Wolfie’s is more complicated to get to, but if you are willing he will lead you there. You just have to be open to following.