Is Sensory creating the behaviors?

On my last post I shared that my son E had a rough day. Everything was off about him and it seemed like everything was sending him on a tail spin. I mentioned that his OT had the look of being “Done” with him and I was right. This week was his last week with her. Allow me to share with you what happened.

E went to OT this Tuesday after last week kicking the OT in the mouth. I was prepared for her to tell me she was done with him. Thankfully she gave him another opportunity but not after speaking to me and letting me know her thoughts. The OT believes that E is not in control of himself. That his hyperactivity and a few extra undiagnosed labels, tossed in for good measure, OCD, ODD were getting in the way of his completing tasks. I know he has hyperactivity. That his mind and body are constantly moving but I just felt there was something more. Yes, his “Want” is a factor but was she looking at WHY it was playing such a role in his life. 

My thinking is that E is overstimulated in the OT environment. That he is in this small room with people coming in and out, the phone ringing, bins of toys that he can see what is inside, the parents outside in the waiting area with other children making noise, the door opening and closing, smells of an old house, etc. I share my thoughts with her and she gives him one last try. When his session was over she calls me in.

The OT begins to tell me that she sees E get frustrated and that she too gets frustrated because she can’t help him. He doesn’t do the work because he is hyper focused on other things. That he is constantly moving and that when she tried to force him to do work, he bit her leg. She told me she would no longer work with him until he is regulated on medication. UGH! Told you she was done. 

In any case, she proceeds to tell me why she can’t help him and that she is sorry but for the safety of herself and other kids she would have to pause care until he is medicated. Then tells me I should call the doctor and tell them it’s urgent despite my having an appointment already scheduled for mid August. I sign the second incident report and head home. 

He’s upset because I told him that he was not allowed to return anymore because he hurt her again. E kept saying “I will make it right, Mama” but I knew despite his wanting to, that he couldn’t. She was right about one thing, he was out of control but I don’t think it was just hyperactivity or any of those other things she added. Part of the reason we went to her was to address his sensory needs but she never focused on that. She wanted him to sit and do work. 

I’ve been reading this book called “Beyond Behavior” by Dr. Mona Delahooke and so much of the book sounds as though it was written about E. My son has his days and often I know that either his siblings or the world is setting him up for the kind of day he will have. Alone in his safe space, he is your typical kid. Shows no “behaviors” is kind, gentle and funny.  What if like the books says, the behaviors are just a symptom of what he is feeling. For example, E was having a great day until things started to change in his world. Add one sibling and he tends to be a bit louder but still good. Add say the TV and he becomes a bit jumpy. Then add the other sibling, specifically the brother with Autism and the clashing begins. Add my talking on the phone and the demands or climbing kick in. All those additions to his day lead to an off day because the world he is most comfortable in is ever changing.

What if every reaction E has, is a way of him comping with what goes on around him. I know that when I am uncomfortable, I often make inappropriate or corny jokes to hide how I feel. But it only makes it more awkward sometimes. What if his aggressive behaviors are simply a response to how he  is feeling? I’m still reading but it goes along with what I have been saying for the past two years, that it seems like something more is setting him off and that it is almost like a response to something. 

We have an appointment coming up with his Behavior Pediatrician soon and I will address this with her when we meet. I am excited about this because I feel like now that I know this is a possible answer,  that maybe I can help him and the world can see him one day the way I do.  

I’m going to keep reading and educating myself for the sake of my children. I am not looking to change them but to help them. I will keep working with them to find what works. I highly recommend the book for any parent who has an autistic child with Maladaptive behaviors and feels like their is something more to just unpreferred behaviors.  It’s just a tool to help raise discussions with doctors and therapists. The search for answers continues...

We are blessed for sure.

With love and dedication anything is possible!

Endless battles

Today has been a rough day. The entire summer has been difficult. I’m tired and we are only a few weeks into the summer. I’m just trying to keep the kids busy. Show them a fun summer but E, well, he can be a lot. He requires me present every second of the day not because he actually wants me present but because I can’t trust to leave him for long. He’s high energy and impulsive which is a recipe for trouble.

It started this am with E wanting to watch TV. We didn’t want him to start morning off that way, especially not with the show he was looking to watch. Now the show itself isn’t bad, it’s just that it does something to him. He responds negatively to it. It hypes him up even more than normal and he starts jumping and climbing things. Sometimes I leave him watching tv for a minute or two when I have to go to the bathroom and I find him spinning out of control while laughing. It looks like a happy insane person. I immediately turn tv off and that turns into another outburst. That was this am.

Then we had to battle it out just to get E out the door to go to school for Extended School Year work. You’d think that asking him to put his shoes on is comparable to me putting him in a pit of snakes. He just didn’t want to do it and acted as such.

Finally, we made it to the school and E proceeded to run from teacher into the playground and do what he wanted not what was needed of him. Generally, I like to pick my battles with him and address but I tagged the teacher in. When he wasn’t listening to her, I had to do the count down from 5 and issue the threat of consequence. Today the consequence would be that he would not be able to do camping in the yard. He ran back into the classroom. He was now with his teacher and I would get sort of a breather for about an hour. At least it should feel this way, I spent the time running an errand with the other two kids and worrying about whether or not E was spinning out of control. The teacher later shares with me that he was “High energy” but managed to get all his work done today. A huge relief for me but I knew that this “High energy” was coming home with me and the day was only half-way done. As we try to walk him to the car, E decides he wants to have a picnic, tosses his snack over into the fenced playground area, climbs the fence to retrieve it, opens it and laughs. I mean, he found a way to get back into the playground and get what he wanted. Dumb he is not. Did I yell? Nope just told him he was loosing his camping adventure for that choice. He came running to car.

We get home and I have to prep the house for speech. Thankfully, the speech therapist canceled, vacation, so that was a huge break. For a moment I actually thought about how nice it would be to go on a vacation. Then my day dreaming about a vacation was taken over by anxious thoughts of my child misbehaving or making poor, impulsive decisions that would lead him to flying off a balcony or into the ocean. So there’s goes that....but I will leave my thoughts on my anxiety for another day because the days running around isn’t done yet.

Last part of this day is Occupational Therapy for E. I already was dealing with his “High energy” and also dealing with some really bad choice making. Punching his brother, biting his shirts and food refusal. Now we were off to OT and I was hoping all would go well. He seemed quiet in the car and went in without any issues. The room he was in was silent. Things seemed to be going well for him and the therapist. It’s 4 o’clock, it’s over. He did well. Then I walk in the room, therapist asks him to put the item away and show me what he completed today. E proceeds to scream and kick that he wasn’t finished. While holding him back, she tells me what she is trying to get him to do. He catches her off guard and 1,2, PUNCH! She quickly and quietly walked past me holding her mouth and the look in her eyes said “I’m done!” She didn’t return and though I was worried about her, I knew we needed to leave. I’ll wait and see what the OT says. Wouldn’t be the first OT to let him go. I needed to get him calm, so I did I spoke to him with a firm and direct voice. He said “I’m sorry, I will make it right Mama.” The calm lasted about 2 minutes. He was in the hall and mad again because he WANTED to play. I drag him out, sit him down, and wait for him to be calm again.  We walk to the car and he is enraged again. I wait...I buckle him up and go.

Now E’s trying to get out of his seat-belt and I am reminded that I need a better car seat for him, a better car to go with it. I feel that pain I get in my throat just before I am about to burst out into tears. I know I am not the only parent going through something similar. The only bonus is that he hasn’t bitten anyone today. He gets unbuckled and then I have to stop car and address it.

Make a quick stop at my parents to pick something up. Now E wants to get out. But I just want to run in. While I do that, he is punching his siblings. I don’t fight, I wait him out. He knows what he is doing is wrong. I know he does. The thing is, he’s improved. He was much worse a few months back. I’m just not sure what else I can possibly do to help him with these endless battles. My only hope is that he now shows remorse. That’s progress.

Then we get home. I’m watching him right now playing with his sister and brother. E is doing such a great job and so full of joy. He’s happy despite it all. Oblivious to all that he puts us through. I love him and I just want to help him reach his potential while meeting the expectations of the world. Problem is, I don’t think the world is ready for him because of their expectations.  I have faith and confidence in him that he will get there. It is just going to take him a little more time.

And that was just this Wednesday.

We are blessed for sure.

With love and dedication anything is possible!

Enter the World of Meds

Not to long ago, we succumb to the idea that our son may need a little more help when it came to self control and impulsivity. We had done so much with Behavioral Therapy in hopes that it would help curve some of his maladaptive behaviors but then Early Autism Project just dropped him. The same therapy that is meant to work with and improve those behaviors, used his behavior as their excuse. It was repulsive really but while we were in search of a new ABA provider, we knew something needed to be done to keep him and others safe. Enter the world of Meds.

We met with his Behavior Pediatrician and discussed our  medication options. You may recall me discussing this in one of my other posts. I had genuine concerns about how the medication/s would affect him. My worry is that he could get worse, that the medications could mess around with his young developing mind or that it could be lethal. All reasonable thoughts and concerns. These medications are all stimulants and he is only five years old my feelings were legitimate.

The key for us is that he has a wonderful Behavioral Pediatrician who heard my concerns and understood E’s situation. She knew he was a very bright boy with a vivid imagination who often had sensory and major impulsivity issues that presented poor choice making and sometimes extreme aggression. I wanted to help my son before he hurt himself or someone else. He is super strong and I knew it was only a matter of time. So we agreed to try a drug that was a Non-stimulant first, Guinifance (Tenex). There were some risks involved as it had never been tested on a boy his age but they outweighed the other stimulant side effects so we started him on it right away. To start the dose would be very small, that would increase slowly but not exceed 5mls a day.

We slowly worked him up to 3.5 mls in the am which lasted 12 hours and a second dose of 2 mls once at home. He was showing signs that the medications were working. He was listening to instruction better and was taking naps right after school. However, problems started to present themselves in different ways. He now was falling asleep in class despite having a good nights rest and his blood pressure was a bit low at times. After meeting with doctor again, she decided it would be best to lower his meds. We then went from 3.5 mls in am and then no medication upon arrival home. Then a few weeks went by and he was still showing the same issues but then things managed to get way worse. The school nurse called me stating that he was cold outside but it was 90 degrees out. When they brought him in, he fell asleep and when she took his BP it was dangerously low. The school RN hydrated him, called the doctor and sent him home. The doctor immediately called me and told us to stop the medication all together. At this point, I had already decided this as well. I rather be dealing with the impulsivity and hyperactivity then risking his health or worse his life.

Now he is taking nothing prescribed but is doing a few things differently suggested by the Behavioral Pediatrician. He drinks a small bit of coffee with milk as it has a reverse affect on his hyperactivity. I am sure plenty of parents would be against this idea but I was fine with it. Culturally,  I grew up with a grandmother that gave us coffee and milk as small children so I see no harm in it.  The only issue is that I can’t give him that at school. So I will cross that bridge when we come to it.

We also tried Chamomile drops but it gave him a severe rash. Strangely, he doesn’t have the same reaction when he drinks the brewed tea. He took Genius Drops for focus and attention but that ironically made him more hyper. I have also started giving him vitamins with Omega’s to boost his neurological development. Normally, he refuses all vitamins especially the gummy type ones but he takes this liquid just fine. It is strawberry banana flavored and he and his siblings love it too. The entire family loves Barlean’s Omega-3, and it is highly recommended by our family. For everything else, the search goes on.


We are blessed for sure.

With love and dedication anything is possible!