Matthew and David have spent many weeks this summer at a brand new camp program that has been created by an organization that works with adults and children with brain damage. The camp has been created for children on the autism spectrum and also for children with ADHD and other learning challenges. One of the most interesting parts of this program for me has been learning the techniques that are incorporated in this summer camp. We had a meeting last week where the parents were taught some of the buzz words that the children are using at camp:
1. Big deal/Little Deal- so often the children get upset disproportionately to the problem. Helping a child to clarify whether a problem is a "big deal" or a "little deal" helps them to better monitor their response to the situation.
2. Ready/Not Ready- helps a child to determine whether they are ready to participate or not ready to participate and check in with their emotions and actions.
3. Make a Plan- for children on the autism spectrum and with any sort of developmental issues, often their thoughts are scattered, so making a plan gives the child a guide for how to get through a situation.
At camp these techniques are used all day long! I knew that these techniques would be useful when David started saying "it's a little deal" all on his own in response to a problem. This helped me to teach him this summer that having a poop accident is a "little deal", but having a poop accident and then sitting on the carpet and not coming to get changed is a "big deal".
We have talked about "ready/not ready" when David is struggling to keep his hands to himself in the car. "Are you ready to ride in your spot next to Jacob, or are you not ready, and need to move to the back?" Typically just using these phrases helps David to cue in and move to the next step.
Tonight I had a chance to have a parent meeting with Dr Tim Feeney, one of the directors of the program. Tim specializes in working with children and adults with Traumatic brain injuries, and has spent time at camp working with all of the children. I was so excited to meet with Tim because I wanted him to help me see where I went wrong with a problem Matthew had yesterday and get him to help me problem solve for the future.
The short story of the problem is that I wanted to go to Karate class, and I knew it was touch and go as to whether the boys would be able to behave while I took my class. I prepped them for what "proper behavior" was and what was expected and then said that if they did well we would go out for ice cream afterwards. Matthew took his IPOD with him, and David and Jacob brought books so I thought we had a good chance of being successful. Unfortunately, Matthew interrupted class 3 times, and David bothered Jacob throughout the class, so I ended up leaving after only 30 minutes of class rather than the full hour. Because Jacob had behaved I felt that he had earned his ice cream, however the other 2 had not earned ice cream. I went to get Jacob a quick cone and Matthew went BALLISTIC! He was running through the parking lot, threatening to run onto Deleware Avenue, cursing and basically totally out of control. I tried talking to him about making a plan. I stayed calm and talked about ready/not ready, but he was having no part of it. He was angry and simply out of control.
Thankfully, a friend happened to be having ice cream at the same time, and after a while Matthew settled down when she offered to drive him home. He had a nice ride with her and then came home. He of course was calm, me not so much anymore.
So I asked Tim where did I go wrong? What should I have done differently?
Tim first suggested giving Jacob an IOU for ice cream for another day. I felt like this wasn't fair to Jacob, and Tim continued to brainstorm.
His next thought was that I could have gone to Stewart's to pick up milk and at the same time gotten Jacob a small ice cream. He thought this may not have caused as big an upset for Matthew and certainly would have at least kept him off of Deleware Avenue. He also suggested that I could have gotten Jacob an ice cream at Stewarts and Matthew and David something small, that this would make the point that they had lost the golden prize, but that all was not lost and they could try again for ice cream another day.
I had thought I had done so well because I stayed calm, I used the buzz words, and I didnt make Jacob lose out on his reward because of the other boys behavior. However in talking with Tim I realized a few things:
1. Jacob still lost out- how good did the ice cream taste while watching and listening to Matthew's tantrum?
2. Matthew lost out on a learning opportunity because he was too angry and explosive to learn from what happened
3. I lost track of the little picture which is that 3 boys lasted 30 minutes while I did something I loved. Just a year ago 30 minutes wouldn't have been possible. Sure, they didn't last an hour, and sure I was embarrassed by their behavior, but in reality 30 minutes is still to be celebrated.
One of the best parts of talking to Tim was that he was able to help me put into words the struggle I have with being Matthew's mom at times. We have had a good summer, lots of good days, however I am often tired of being accosted by Matthew's questions from the very second I open my eyes until the second he falls asleep. It is an awful lot to hear any other human talk as much as Matthew talks. Tim said when you are with Matthew it is almost like you are constantly being verbally assaulted. You cannot predict as the listener what he is going to say, and often the conversations are disjointed and it takes a lot of effort as the listener to stay on task with his conversation. This is exhausting as the listener. Tim clarified for me that it is ok to feel exhausted, that everyone who is with Matthew feels this exhaustion. It is always helpful for me to have my feelings validated, and to have the visual of being verbally accosted for some reason made a lot of sense to me and was able to help me put my emotions into context.
Raising any child or children is a learning process. Raising children with special needs requires learning because the child does not follow the typical developmental pattern, but the good news is that with each new technique I learn, my parenting toolbox becomes more full, and I am more ready to parent with success.
- I am a single mom of three amazing boys! All three of my sons entered my family through adoption. All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!