Ryan is in crisis. We know this and I have been writing about it. This morning it all came to a head like it does repeatedly every week, sometimes daily. Ryan and Aaron go to an after school program at their school only on Fridays. The after school person approached me. Ryan has been not doing well in after school care and he risks being asked to leave the program.
Then Ryan’s TSS met us in the school yard. He was going on and on in such a negative way about Ryan’s behaviors. He went on quite a bit and we were in the middle of the schoolyard long after all the other kids were inside. Ryan is not trying in school, he is putting his feet in the desk, he is being disruptive in class, and not following the TSS’s redirection. I tried talking to Ryan about trying his best at school and following his TSS’s directions. I walked away from the school and sobbed. I sat in the car by the school and I felt unable to drive. I just cried. I felt helpless to help my kid, which is the worst feeling in the world.
It dawned on me that I might want to call Ryan’s amazing behavior therapist. She usually does a great job talking me off the ledge. We talked about the up in the air Autism Spectrum Disorder diagnosis, the TSS, and the fact that my very happy over the summer kid is now as oppositional angry mess who is getting in a ton of trouble. I am so glad I called her. Besides having someone to cry to she helped me get organized, make a plan of action for next week, helped me make some realizations, and gave me some concrete action items of things I could do to help my kid.
We made a plan. I am ready to start discussing some medications for Ryan. This is not an easy thing and meds still may not be a possibility for Ryan. We have to probably see the neurologist about the seizures and the strange medicine reactions he has had in the past like being allergic to Depakote and psychotic reactions to other epilepsy drugs. We also have to consult a cardiologist. My husband has had cardiac ablation surgery to help correct cardiac arrhythmia. Many people in my husbands family have had this issue and if Ryan has the same condition it may exclude him from being able to take stimulant medications or he will have to be monitored closely. I am ready to see if this is a definite no option for us but medication can’t be started quickly.
She wants to try and have the TSS start noticing Ryan’s positive behavior and reward it. The TSS thing has been bugging me and she put her finger on why he bugged me so much, he is focusing on all of Ryan’s negatives never talking about the positives. The therapist said she wanted me to make a sticker chart for the TSS. On the sticker chart I am going to have to put negative behaviors like not complying with directions on the third prompt, hitting or touching, and feet in the desk. Those behaviors will have consequences but the chart will also reward him for doing the things he is supposed to do in school. It gives Ryan something positive to work for and takes the focus off the negative which will smash his self esteem. He will have a choice of three rewards if he gets a certain number of stickers. She then handed me a name of a OTLR she wanted to me to try and see for a full scale sensory evaluation. This will give us a third opinion on the Autism diagnosis or if maybe Ryan has a Sensory Integration Disorder.
I got off the phone feeling oddly relieved because I have felt powerless to help Ryan lately. That is such a hard place to be. After I hung up the phone I felt like I had new avenues and roads to explore to help my kid. If I am actively doing things to help make all of our lives better I feel good but watching Ryan flounder is intolerable and painful. I made the best call this morning. I am so glad we have this therapist in our lives. I am not sure where I would be this morning without her.
October 26, 2012 at 7:52 am
I’m so glad the therapist was able to help you find some new avenues and gave you a feeling of light at the end of the tunnel. My son’s issues are very different from yours, but that feeling of not knowing how to help your struggling child is the same. It’s awful. Sending you hugs.
October 26, 2012 at 11:32 am
Ha. I was going to suggest something about the TSS focusing on positive more too. It took me half a year with one of my son’s teachers to realize that she and I had gotten in a weird thing where it was expecting to hear the bad stuff and so she was providing me with it. And I had to be honest with myself that I was kind of encouraging it with my lead ins talking with her. It was oddly hard for me to say “I think you need to just tell me positive things for a couple of days”. I think it was good for her to be forced to find the good so that she could tell me positives…it shifted her focus and changed our dynamic too. I still feel stress when talking to teachers. I brace myself a little even though things have been great with his last couple of teachers. In fact, this summer I was called out on it by a stoner surf dude at my son’s camp. He was chuckling and said “man, you should’ve seen your face when I said I had something to tell you about your son…it was like you thought i was going to say something bad?” (He only said “your kid is a shredder”…it was surf camp!) It’s scarring to hear negatives day in and day out…and the truth is, it really isn’t helpful most of the time. Finding (sometimes require forcing) a positive approach will help you all, I am quite sure!!