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!
Often I feel as though my life has been abducted by little aliens from a far off planet. Having two boys on the Autism Spectrum, one with Tourette’s Syndrome and a Nuero-typical daughter who has a dash of flare, keeps it interesting. Like many of us, life has its challenges and I wanted to capture this time for them. Witness our journey while we share stories of our every day lives and see just how similar are worlds really are. Take a trip with us...I am sure it will be out of this world.
Tuesday, October 8, 2019
Wednesday, September 25, 2019
Messy Layer Cake

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.
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!
Monday, September 2, 2019
Cursive No More
This year my eldest son will be learning cursive or script handwriting. His little sister has already learned how to write her name and is super excited about it. The fact that she has her brother beat is even more of an ego boost for her.
In any case, N will learn that this year. We were talking about it and he tells me N - "Mama, Why do I need to learn that?"
my response was that "It's mandatory. One day you will need it to sign contracts or checks." then we get into a back and forth.
N: Well why can't I just write my name or do it on the computer? It's hard for me.
Me: Because it's what the school needs you to learn and what if someone needs the actual signature, you can't do that on the computer. (He grimaces at me)
N: Yes, Mama the computer can do the cursive for you. (As if I didn't know this)
Me: Well, that's like cheating.
N: Oh, are you sure that's cheating?
Me: That what the school needs you to learn.
N: Seems like cursive is a waist of time. Everyone uses computers now.
At this point, I was running out of responses so I ended it with the famous mom answer "Because that's just the way it is" and he gave me a look and moved on. He knew that this was the comment I make when I have had enough of his questions. I can't disagree with him, even your bills can be paid online, making checks a thing of the past and me a relic for still writing them.
This is just one of the many banters we have on a daily basis. N’s an inquisitive kid, he questions everything and we are both smarter because of it.
We are blessed for sure!
With love and dedication anything is possible!
Tuesday, August 27, 2019
Bubbles.
Just the other day I was thinking the back when I went in to get my son initially evaluated for disabilities. I remember walking into this brick government building that had the smell of stale air trapped in it. An older gentleman walked us back to a room where I was to answer several questions about my sons behavior, development, those kinds of things.
He was in a little corner playing with some toys and I was answering the man's questions. Something suddenly startled easy, something made him get up in a burst and start running around the table that we were at. As soon as I went to go grab him rather just before, he banged his head on the corner of the table. So hard I cringed as I felt his pain. But he, he did not. He wanted to continue running around the room as if nothing happened and it broke my heart. Most parents would want their child not to get hurt and it is true that I didn't want him to get hurt but I didn't want him to feel at that moment. I would've given anything for him to feel what just happened to him.
The man doing the evaluation, looked at me and asked "do things like this happen often?"I put my head down and said yes. After bringing me some ice for his head, he said to me that there was one more test he wanted to do, that I could be in the room but I was to not encourage or participate with my child. But if I found it difficult I could sit on my hands if the child came to me. I was to not speak speak for him or engage with him during this time. I agreed and we started. We then walked over to a smaller room one that reminded me of the ones you see in the movies where the insane person is capped and there's just a small window to peek on them. We went in I sat down in the chair in the corner and immediately sat on my hands knowing that it would be difficult for me not to want to hold my son when he came to me. At this time, I was the only person he saw it but rarely wanted me to touch him.
Screener began to try to engage my son and play but he would not. The man pulled out some bubbles begin to blow them. Nothing In between blowing he would tell me "children love bubbles. They can't help themselves, it automatically brings joy out in them." He blew more bubbles. My son did not look at the bubbles, did not try to pop the bubbles, kept on as if they weren't even there. Afterwords the screener run is back to the original room where E had hurt his head. It was there that he told me that my son likely had autism. It was there that I felt my heart grieve. Ignorantly, I felt nothing but pain and loss of a dream for him. As a mother when you're pregnant you think of all the possibilities this child will have. Of what they will look like when they grow older, how they will be or who they will become. You never expect or plan for things to go wrong or be different. At that point all I knew or felt was that I had to prepare for a life with a child who would be different. The man looked at me before he left and he put his hand on my shoulder and told me "my son has autism. I have never heard his voice. He lives in a small apartment and has a small job. He a health aide that checks on him regularly as do I but he's independent.This is not the end for your sons future, do not let it be." if he only knew how much of a gift that statement was to me.
Having gone through many of the early struggles of acceptance, I began fighting for all that I could do for him so that he could reach every bit of his potential, if not more. Doing this has been worth it. Today, E is outside playing with his brother and sister. Actually engaged in play with them. I am reminded of this day and I wanted to share it with you. Here we were blowing bubbles and I was able to watch him run in his sisters rain boots and play with his siblings, chasing after bubbles. Popping them and smiling with joy. It filled my heart and reminded me how far we have come.
The pre-screening was hard. Probably even harder than the day we actually got his clinical diagnosis. The positive is that it prepared me and taught me that I need to fight for my son. That 10 minutes of wallowing was enough. That from the moment he was diagnosed, I have done nothing but what I thought was best for him. And if all he ever did was chase bubbles for the rest of his life, I'd still know that he traveled leaps and bounds to get here.
Once I was told I would never have children, now I have three. Today, it's bubbles, tomorrow...the moon!
We are blessed for sure.
With love and dedication anything is possible!
We are blessed for sure.
With love and dedication anything is possible!
Thursday, August 22, 2019
News Story - Airlines grounds crew
I wanted to share this news story about a family who was traveling and denied travel arrangements because of what seemed like discrimination or just pure ignorance on the part of the airline crew members. Something as easy as switching a seat for a special needs person could not be accommodated for whatever reason is disheartening. It still amazes me how people are still so ignorant and how call ace they can be.
Read the story and see what you think. I for one, was taken back.
Subscribe to:
Posts (Atom)