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!