A question of safety

Having children with special needs comes with a lot of things, therapy after therapy, doctors appointments, State Insurance reviews, form after forms, 504 and IEP meetings, stress and often a great deal of worrying about the child.

Then there are the typical concerns for your typical kids that parents try to teach their child about. Stranger danger and bullying. We ALL have to worry about our kids at school and the new threats they face with "active shooters". For parents like myself, we worry a great deal about safety. I worry about my youngest running away, darting out, hiding in the woods or heading to a body of water, not responding when called or asking for help. It's scary. I'm constantly in Emergency Management mode for E more so then N. I worry that I concentrate so much on the boys that sometime I forget to check in on my daughter. So I have to overcompensate and make sure she is taken care of as well.

When placing your child in the hands of so many different people, for so many different things, there is this unspoken trust. You expect that they know to keep your child safe. That the protocols you put in place will do just that and with a little common sense, there can be some reprieve in the stress and worry for a little time.

Children with Autism often come with more then one issue/diagnosis. If you have been keeping up with my blog you know that my youngest son has a number of issues. We started with his speech loss. He went from no speech to speaking up a storm. Yet, he still is working on his expressive language and communication skills. E will tell you what he wants to tell you, in the way he knows best how. He isn't able to express pain like others do either. He isn't able to say "Mama my head hurts" when he has a headache or know not to touch a hot grill because he doesn't feel the burn sensation like others would immediately. Because of things like this, I often worry that he will not be able to tell me if someone hurts him. He wouldn't think of telling me or so I thought.

Recently, those fears of him getting hurt and not telling me were tested. As any parent would, you would be extremely concerned when receiving a call from the school that your sons bus was being turned around and that you needed to pick him up instead. What could have happened? Did he do something unacceptable? Was something done to him? They know what he requires and the bus people should know how to meet those requirements. These are just some of the things I thought to myself as I drove to go get my son on the day the school called me to come get him.

When I arrived he was flush, very red, sweaty and hot to the touch. The teacher told me that the bus was hot and that with the windows not open, it appears E could not regulate his temperature causing behaviors. I had no choice to believe her because she told me this and he was sweaty and red still. She also told me that "something seemed off" when she entered the bus, "all the kids were upset" so I took a mental note of that.

As we prepared the kids for bed, the Health Aide and I got E into the shower. It's then when I noticed them...bruises on his shoulder. As I turned to examine him with aide present, I noticed even more bruises around his neck and on other shoulder as well as face and elbow. I was infuriated at this point, grabbed my phone, took pictures and text them to a family member and teacher. I asked E, how did you get those bruises and he responded to me "The big man on the bus. He hurt me.". A fire ignited in me.

Immediately, I wrote a letter to hand to the school the next day to pull video from the bus to see exactly what happened to my son. With a slew of excuses about the bus breaking down and not having access to it, it took nearly 72 hours to finally gain access to the video. Then came the time to watch it. We gathered in the principals office where I requested that the SRO (School Resource Officer) see the video with me. Sitting there having to watch your child be mocked, tormented, ignored and physically assaulted was a nightmare. I wanted to be able to help him but there was nothing I could do. All the time he screamed and wrestled, sometimes even fighting back. I wanted to strangle, no I actually wanted to do a lot more than strangle the man that had done this to him. I wanted to rescue E and all those children who began screaming along with my son echoing his pain. I needed to be calm and rational.

I watched as E became limp fighting for his space, to be heard, to be free of his tormentor. I prayed there would be a savior as the bus driver failed to intervene and help my E. That the harness that held him would snap and he could hide under the seats. I watched as he was mocked as he requested space. As his body was slammed (body checked) and wedged between the attendant more then once and window of the bus, slammed into his seat, elbowed into chest and neck, forced down from his neck. All the while, my son offering up solutions to the adult unheard. It wasn't until the bus turned around that my son was rescued. Pulled from the seat that he was tortured in. E sees his teacher and when she asked "what happened? My son with a listless body, raises his arm with no words, simply points to the man that had hurt him. She takes control of the situation, releases him from his harness and takes him back into building.

That was my nightmare realized. My son hurt and I am no where to be found. Not there to help him, not even aware. It is a tremendous amount of guilt that I carry. I keep going back in my mind looking for signs. Like his recent bought with school teacher, refusing to get on the school bus. We just thought he was focused on something else. He was afraid.

Now we are seeing the nightmares, he can't or doesn't wish to discuss them. If he does mention something, it's in his way which sometimes takes some decoding. He wakes up at night saying that he is "scared" but can't say of what. He's taken to sleeping in our bedroom, just to know we are near. He recently mentioned to his teacher "It's not right for bears (his Stuffy) or people to suffocate, right Mrs. L?" For his teacher and I, we heard a little boy trying to voice his experience. When a 6 year old runs into a bathroom stall so he can cry, fearful that something may be done to him, it’s hard. I want to cry right along with him but he needs me strong and able yo assure him that he is okay.

I'm doing everything I can do to help him. Seeking out therapies and making sure that the man that did this never goes anywhere near him or any other child ever again. I'm angry. It's a tough time for us. There were so many players in this but I just have to be calm and get it done the right way. My priority is his safety and his emotional health wellbeing.

I am still grateful though. Thankful it wasn’t worse. That though we are living with emotional scars at this point, that the physical abuse didn’t leave to permanent physical injury or worse. We have a long road but we will do it together.

We are blessed for sure!

With love and dedication anything is possible!

Messy Layer Cake

Recently, I posted about my experience when E was initially diagnosed and how that felt for me. A lot of time has passed since then and I thought we were finally in a place where we were getting a handle on things. Of course, the minute I let myself get comfortable something new comes into play.

When E was very small, he cried a lot. At two he would stand on his head in the crib, walking and dropping to floor, then came the body stiffening, at three he started to walk and his right leg would just stop functioning. The neurologist initially thought it was just a motor function that affected mostly girls and only 1% of boys. Then he developed this neck twitch with mouth wide open. Watching these evolving movements is hard. In my gut, I knew there was still more I needed to know in order to help him. Back we went to the Pediatric Neurologist to find out more. After an EKG and some questionnaires we had our answer, Tourette Syndrome a.k.a. Tic Disorder. In this moment my thoughts went silent, my heart wept, I felt my nerves tremble while my body felt stoic, motionless.  The doctor said “Mrs. Jimenez?” And I was back, with a multitude of questions for her.

This was his missing piece, this was the part why we couldn’t understand what was happening to him. Why we always felt he couldn’t control certain things even when we kept telling him things like “What’s wrong with your throat? Why are you making that sound?” Or “stop slamming your body like that! Don’t do that it’s annoying.” Then my husband and I felt this tremendous amount of guilt for being so hard on him. For pushing ABA on him when it was clearly having an adverse reaction to his Tourette’s. That telling him repeatedly to stop was counterproductive likely only stressing him out more escalating situations.  I knew we needed a new game plan but how could I get it. E is a very complicated little boy and this just added to things.

Often, I have described E to people as a fabulously, smart, loving little boy who has a lot going on. He is a messy layer cake and in between all the sweet layers are cake batters that just went wrong. The sweetness can mask some of the distasteful layers. Now when I present his medical, I start off with E is a beautiful little boy who has Autism Spectrum Disorder, Sensory Processing Disorder with Tourette Syndrome (Motor tics) and Hyperactivity.

Since his new diagnosis, I once again have gone down the rabbit hole in search of as much information as I could find. How could I help him live with this, potentially, all his life? What things does E need in place in order to be successful in life? I called for an IEP meeting to inform the school of his additional diagnosis, make sure they understood that the behaviors were likely related to the Tourette’s and sought the school districts assistance in protecting my son while requesting help from them. I was surprised to learn that the district did not have a Cognitive Behavior Intervention Therapist for Tic Disorder considering the Center for Disease Control and Prevention (CDC) 1 in 162 school-aged children have Tourette Syndrome. According to the Tourette Association of America more that 10,800 South Carolina children have Tourette Syndrome or a similar tic disorder.that Tourette’s occurs in 1 in 160 school aged children and is 3-4 times more common in boys than in girls.  Since the school may not have the resources to hire an independent consultant, I have to push for education of the existing staff.  I have to rely on outside private care and strong support from the school to make a plan that can help E succeed, overcome and thrive.

My son is a lot of things but the best parts of him make all we go through worth it. The love he shows us daily is worth us putting up with a lifetime of tics. So we dust our shoulders off and wipe away a few tears. It may gets messy, it may even get worse before it gets better but we will ensure that he gets the help he needs.

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!

Seeing the changes

Some of my readers know, I have been struggling with my youngest son, E and his school. We felt as though he was not receiving the proper education he deserved or that he was being treated improperly. Not abuse, but lack of skill, knowledge and passion still made it traumatic. Socially and academically he was not thriving in his school. He hated going. Being constantly shoved in a "Quiet Room" did NOT exactly help build a strong bond with the teacher and the room assistants, as well as the school administration.

We were constantly getting calls from the school about his behaviors but we assumed he was getting some work done. To the point that when the phone rang, my husband and I would immediately stress out. The teacher never communicated enough with us about how we can advance him academically or even with the specifics to what they were dealing with unless it was related to negative behaviors. I was always the one asking for homework or for insight on his day. Communications were only about his behavior through app messaging (requested by me) or mandatory paperwork. The avoidance got to be so much in the classroom that my son wasn't learning at all. However, I didn't know this until the 3rd quarter progress report came in. We just assumed he was getting some of the work done. Six months had past and he was losing all that he had gained.

Very quickly, I made an appointment to speak with the school principal to discuss my concerns and she seemed shocked that I was complaining about the teacher and that my child with said teacher was not thriving. Believe it or not, she then told me, I wasn't the only parent with this concern and she isn't exactly aware of what is going on in that classroom. She said she was "in the dark." THE PRINCIPAL. She said she would get back to me. Could you imagine? It felt as though she was blowing me off. I left that meeting with such frustration and anger about the lack of passion she showed that I put a call into the school district.

Finally, the staff in special services at the district office came through for us, removed him from the school and transferred him to another. We were so happy about this. I believe my son suffered some level of trauma while in their care, which built distrust with those from that school. They weren't going to get anything accomplished with him. The move gave us hope that with a new slate, E could finally begin to learn and to love learning. Only a few weeks in and we can already see some positive changes. The teacher communicates regularly with us. Shares not just the failures of the day but also his successes. E shares with us small details of his day in a positive light.

The other night E was using a small learn and play computer, he said he was doing "Homework". He was getting the answers right and asking for help when he was not sure. I was so proud of him. Then to my surprise, he asked for a desk so that he could do more homework. I mentioned to him that in order to do that, I would have to get rid of his Rocket tent and asked if he was really okay with that. E loves this tent. There are nights he prefers to sleep in the tent versus his own comfy bed. So when he said "yes" I cried because that was his way of letting me know, he is enjoying learning.

Don't get me wrong,I know the E still has a long way to go. We are still dealing with behaviors but he is working through them. He is capable. For him to be in the care of others who believe in his potential, who have the training and passion to help him achieve all that he is capable of, well that is just like bringing sight to a blind man. We can't wait to see what is to come.

We are blessed for sure.

With love and dedication anything is possible!