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!

Chooo! Chooo! goes the Train

We have been having a few rough weeks with E. Non stop aggression at school displayed towards teacher and sometimes students.  Teacher calling us or writing notes with complaints. Principle calling us to come get him from school. It has been a constant battle to keep him from spinning out of control.

This week though, was just the thing that put me over the top. I got the call that said he was misbehaving, that they wanted to place him in the quiet room alone as he was being way to aggressive with his teacher. I hesitantly allowed it, so long as they were able to have eyes on him. Twenty minutes later, I receive another call to go to school.

Now, I was upset and angry. The closer I got to the school, the more I questioned why they couldn't handle him, what was it that was sending him into these tailspins, why were they so ill-equipped? I was mad at them. I was driving with a mindset that I needed to be prepared to fight.

I was on the phone with my husband, screaming not to pick up our son yet. That I wanted to walk in with him and see what they had to say. In my mind, I was going to tell them they had it all wrong, that they were clueless and needed to admit that they didn't know how to help my son. That they were lacking the skill set, training and education to help him.

Then the train happened. 

This really long Union Pacific freight train stops me in my tracks and now I'm steaming mad but can't go any where. I look up to the sky and say "Why God, Why?" Then I realized the why. As I heard the rhythm of the train on the tracks, it began to lull me into a calm. This time I looked up again and said "I get it God. I get it!" I took a deep breath and remembered how to be grateful. I thought of young Kaylyn who died in 2017 from Cancer. Thankful for all we have in E and my other two kids. That we still have them, happy and healthy. To know that yes, we are going through difficult times as a family, individually stressed in our own ways but we had much to be thankful for and that yelling at others wouldn't make me feel any better or any more grateful for the life we have. That yelling at them wouldn't fix the issue at hand, my son has Autism and it comes with challenges that don't have any easy fixes.

There is so much bad going on in the world right now, it gets easy to focus on all that is negative and get lost in the ugly of it all. To attack those that are seemingly trying to deprive you of joy would be wasted effort. It was best not to give them power over us.  I often feel defeated by these calls, judged as a parent, out of control, angry at the Autism or feeling as though I am failing miserably. But then God put a train in front of me, to remind me that there is a better way and life should always be put into perspective.

I am imperfect. My child is perfectly imperfect and though I wish he would conform for the sake of society, I also wish that he never changes. He is funny, loving, cuddly, full of life and my joy. Sure he is strong willed, impulsive and emotional at times but we all are. That train proved that to me. It allowed me to see how I was behaving and thinking. I wasn't putting my best self forward and my kids might just be seeing that from time to time when the stress gets to be so much. We are alive, we are healthy, my kids are almost always smiling and we have a home to watch them grow up in. He had a few bad days, and that's okay, we are okay.

Take a minute, absorb your life, breath and try to keep it all in perspective.

We are blessed for sure.

With love and dedication, anything is possible!

Wake up!!

WHACK!! Good Morning!?

Please God!! Can you please tell me why my 5 year old son thought that it would be a great idea to wake me up this morning with a remote to my head? My face to be specific.

He could of walked over,  gently touched me and said “Can I watch tv Mama?” He could of just stood there staring at me like his sister does. Creepy, I know but I always wake up a bit startled so it clearly works. So with those options, why on earth did he think it would be a good idea to wack me with the remote and then ask me to watch tv?!

It is this behavior that leaves his father and I wondering will he ever grow out of this impulsivity and poor behavior or will I have to sleep with one eye open the rest of my life?  It is startling how rough he can get with us, especially with me. We could be having fun and then suddenly something or someone will set him off and out of no where he punches or slams into you.

Just the day before I took him to the store and from the start he was being difficult. In an effort to control I wanted to place him in the cart. I get things done faster and he can’t run away. He screams so loud an old man corrected him. I remind him of the rules and tell him we could leave now if he behaves like that. So he’s good the rest of the time. Listens and stays put.

Then came check out time. He wanted to play with the belt at check out. Immediately I see he has created this story line with the belt and an item that we still have yet to ring up. He tells me the Keifer shake was his boat, the belt was the water and I couldn’t take it. I respond to him that he has to let it go so that the lady may do her job and mama can pay. This set him off. As I am handing the item  to the cashier, he punches me in the face. Bad boyfriend style, right on the cheek and as I felt the fire come to my face, then he pulled my hair. The cashier gasps, the lady behind me tusk, tusks me  and I just hold his hands off as I try to check out. Now he is screaming as loud as he can. It was embarrassing and frustrating. I felt so judged and even helpless  as a parent. I can’t control him, nor does he want to be controlled.

For the past two years, every day presents a challenges.  There are those days that feel like a remote to the head. It is physically exhausting, can be emotionally draining and often I’m the one walking away hurt. I withdraw when he gets like this. I don’t want to risk subjecting someone else to his outbursts.  I know not taking him to places is a bad thing but it out ways my other options... most days.

Loving him is never a question. I will always love him, fight for him and never give up on him. Some days it is hard to feel like a good mom and do right by him. He, like my other two kids has a piece of my heart. I don’t often cry but for my kids, I will.  I worry often about how they will get treated or how others treat them. Especially the boys because they’re so unique.

 So the day that I’m feeing like I’m writing a roller coaster or when that day turns into a week or month, I just breathe, and then I remember to breathe again. Someone will remind me I am a good mom. One of  my kids will say something like “oh mama, I’m sorry you’re having a rough day. We love you.”  Despite the melt downs, whining and fighting, I’m reminded that they are impresionable little beings depending on me to show them how to become good human beings. That this is a moment in time that can be a learning moment for all. That they are smart and capable of so much. That all of this is worth it if he learns just a little bit more then the day before. Each daily struggle gets him one step closer to the man I pray he will one day be.

So we breathe again, all of us to find our calm. We go silent for that moment and we begin anew .

We are blessed for sure.

With love and dedication, anything is possible!

A one sided game of Hide'n Go Seek

With three kids that go to school and two that come home on the bus 10 minutes apart, the afternoon is the most simplified part of my day. After E gets off bus, we walk in for snacks. He and his sister have a snack and watch TV, I stand outside on steps awaiting the second bus to drop off my eldest. As soon as I hear bus at the corner, I walk across street to retrieve my son. For a brief moment, the bus blocks my view of the house directly across the street.

Joyfully I walk in with my eldest son, asking about his day and notice my daughter sitting alone where I had left them. E is not with her. I call out for him, no response. I ask her where is he hiding, she tells me she doesn't know. I don't have a huge house, 1,100 SqF. to be exact all on one level.  Everything either has a lock on it or an alarm to notify us if E is trying to get out.  I figure he is hiding on me. He loves to do that despite my telling him he shouldn't. I keep calling his name as I check rooms and bathrooms. All doors are closed but I open and check anyway. No answer, no E!

Panic begins to build up, I begin screaming for him.  Hoping my yelling will snap him out of whatever daze he may possibly be in. Pleading with him to please come out from hiding.  My other two kids screaming for him as well. I search the rooms and bathrooms again still screaming for him. I run outside now panicked. Perhaps I missed him slip out as the bus blocked my view of the house for about a minute. One of my biggest fears is that he gets out of the house and wanders away. He doesn't respond to his name often or on the regular. I was sick with fear at this point, as I live near a large pond, neighbor with a pool and three blocks from a very busy road.

Quickly, I gather 2/3 of my kids, run back in the house for one last run through thinking of spots I hadn't checked. I check all rooms quickly and this time under beds and in closets. One last door, my closet in my bedroom but that has an outside lock and door is closed. It was quiet.  There he was hidden behind my guitar case. "Surprise!" he shouts.  I fall to my knees in relief and tears. My oldest son, grabs him and says "You scared the jeepers out of me! You are supposed to answer us when we call you." He said what I wanted but was to upset to say at that moment. Seeing me distressed, E grabs my face and says "No mama, No." I imagine he meant for me to stop crying. He had no understanding of what his one sided game of Hide'n Go Seek had just put me through.

The idea of your kid getting out of the house and wandering off is pretty terrifying for any parent. Having a child like E who doesn't always respond to you, that is unaware of danger and can not say his entire name or address is even scarier. I can be in the same room as him and he doesn't acknowledge us right away or at all. All though he is improving in areas, he is not there yet.

"In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number."

-According to the National Autism  Association

That is why we have alarms and locks on all the doors. If he would have gotten out, it could have been a very bad situation.

Some may say, why don't you take them with you outside? One reason I don't take them out with me is because the bus is literally across from my house. I have a glass screen door that I lock just before I cross to prevent them from getting out but that I can still see them and visa versa.  The other reason is that when I do take the twins with me, as I wait they each want to run off in two different directions. Guess I will be popping them both back in the stroller again and deal with the screaming.

I started to think, what if E had gotten out or away from me? Since I can't microchip my kids, yet, I looked into other options for tracking & safety. First thing I did was sign him up for MedicAlert Found for Autism program  bracelet and shoe strap. It is free. This way if he did run off it would have his immediate contact info for  local law-enforcement, hospital  or who ever finds him can immediately call us or MedicAlert to gather medical and contact information.

Programs recommended by Autism Society for child safety

Autism Society

Take Me Home program - Database program

Smart911 - Law enforcement database for Special Needs

MedicAlert Found for Autism program  - Contact band that can be worn on shoe laces and wrist.

There are watches that you can buy that have a phone connection that allow you to track and even speak to your child. These are great but if your child doesn't like things on their wrist, I don't see how it will last. We are thinking of purchasing one and trying it out on our oldest son. I would love to hear from parents if they have tried this for their child.

Trackers - Here are some that we are thinking of purchasing. Since we are not affiliated with any of these companies we don't have first hand knowledge on how well they function. These are just some chosen by features and ease of use. 

AngelSense - Currently the only tracker designed for special needs children, especially those with Autism.

AmbyGear - This smart watch doesn't just track your child, they can track you as well. And as a bonus, you can set up calendar reminders and alarms to help them stay on task through out the day.

Weenact - Along with safety zone set up, a panic button, and two-way calling capabilities, this device covers all the must-haves that a kid needs to feel safe. It also comes with a long battery life—up to seven days—so you won’t have to worry about the device dying while your kid is away. $75. + monthly service

KigoWatch - $170 + $9 monthly service WORLDWIDE Great for people that travel a great deal. Not sure how well it works in US but really like the concept of this watch.

All that is left is to do is more research, check reviews and purchase one that offers what we need. Though I wish I could test them all out, financially that isn't feasible. If anyone reading this has purchase one of these or another type of GPS tracker for their child(ren), I would love for you to share your experience with it.


With Love and dedication, anything is possible!