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!

A full day, play by play

This morning started off with great calm. First E woke up but still wanted to cuddle which was fine with me as it bought me a few more minutes of sleep. Much needed rest since I stayed up most of the night worried he would wake up and "explore" his way out of the room.

We headed out to eat which was surprisingly not a disaster. I am not sure if the coffee drop I gave him helped him relax and enjoy or if it was still early and we sat far back in the restaurant where it was less noisy. Either way, he sat ate some of his meal without raising a fuss. N just kept reading so we had to constantly remind him to eat. Only towards the end when we all were wrapping up did E start to get a bit difficult. Fortunately, it was just as we were getting ready to leave so that saved us from public scrutiny.

After breakfast, we went to the beach, which was nice for the kids. I am not sure I handle the beach well at all. Actually, I am positive I didn’t but with good reason, I think. My husband and I disagree here. I feel it is important to teach basic rules first and then we can explore extending those rules. For instance, I believe it is important that E be aware of the dangers that the beach presents and the importance of NEVER going into the water past his ankles because he can’t swim and can easily be slept away. Also, if he understands these rules as Gods word, then my hope is that if he ever finds himself alone near a body of water, he will not enter it with out his grownup. On the other hand my husband believes that I should let him have fun as he inches his way past the acceptable zone just because he is present and allows E to set the limits. If I wasn’t there, I am sure he would have been further out. I should note that my husband can barely swim, so having him on swim guard is a bit unnerving.  An adventurer himself, he forgets about the dangers or the importance of rules and structure for a child like E. Either way I was stressed. N kept asking me if I was OK which made me feel even worse. I wanted to have fun with them, it was just hard.

Then they were supposedly going to the playground but E hoodwinked my husband and took his chance and ran (Dad gives E way to much space between them), E proceeded to run up a twenty foot staircase to go down a slide I forbid him from doing. Then when I tell them both that I saw what happened, my husband tells E, “I told you that we would get in trouble.” That didn’t seem very supportive but I guess someone had to be the bad guy. My husband does try and I know he is just trying to be the best dad he knows how to be. I just wish he would really hear me when I express my worries and concerns in situations like this.  I’m sure he has a few choice complaints about me as well. In any case, I tried to push through though under my breathe I did say a few choice words to my husband, who I think desperately wishes I was a bit easier to deal with too.

After a short break in the hotel room for lunch, the kids wanted some TCBY. We wanted to see them enjoying themselves and needed to get out of the room so we went. All three were wonderful. They picked their flavors and sat , most of the time. My daughter was wiggly but ate with out being told. E was overjoyed but became fixated on where the man went that served the ice cream. At this point, he started searching the TCBY for him. Wanting to go behind the counter.  So that was small, but we easily redirected him and were able to get out with no issues.

Ripleys - E was in no mood for pictures

Then against MY better judgment, we went to Ripley's Believe it or Not. Honestly, I was going to divide the kids up at this point but E wanted to go. I hated the idea of leaving him out in the first place, so I said we would try it. Worst thing is we would have to leave. Actually, the worst thing would be us tossed out for E breaking something but I was hopeful he wouldn’t.

Things started off wrong right from the start. E wants space. He rarely likes to hold hands. Often I am tugging him back or running after him. He refuses to where a harness so the moment I tugged him and reminded him to stay close or to stop trying to put things in his mouth, he screamed as if Lucifer himself had shown up. I gave him some space while cornering him off waiting for calm and speaking to him with a gentle voice, reassuring him that we were going to go in. Once in, I tried not to restrain him to much but stay close. Dad did his job in monitoring E while I tended to the other kids. E always looked for me when he wanted me to see something but I don’t think he would have called for me if he was lost in the crowd. He was like a pinball, bouncing from one exhibit to the next. The stress was elevating for all of us and I could see he was excited. Excitement often leads to unpredictable behaviors. We are still working on expressing excitement.

Ripley's was over and I was relieved. As we walked back down the stairs, it led us to....an

Of course it’s an alien game

ARCADE!! Oh the horror. Forget the spooky Oddities they had, this felt like a nightmare. Immediately, the chase was on. It was “Oh, can I do this one?” as he ran from us to do it. My loving husband, who wants to see his kids happy said yes before I had a chance to reply to the request. I could have done without the running around but the kids did OK for a bit.  My daughter was a champion player  on the nerf game and even beat her big brother a few times. It wasn’t until the money ran out that E had a full on meltdown. First sitting on the floor staking his claim to the game he didn’t get to play. Here it became a challenge for me. Usually, I try to remain calm as strangers with their judging eyes glare at us but this is often anxiety inducing. I get down to his eye level but he turns from me. Pro move. Then I touch his arm and he screams as if I was trying to abduct him. He starts hitting and tried to bite me. Now I’m having hot flashes and tell him, “I’m sorry E but we are done. I have no more money to spend here. Enough!”

He walks out only to sit outside and protest a bit more. I tell him that “we can go home now if he likes or we can do one more day of vacation. those were his options. that he needed to help us help him calm down.” He sat frustrated but eventually surrendered, gave me a kiss and held my hand down the steps. Then told me “I don’t want you, I want daddy”, i replied, “If you want daddy right now, that is okay with me.” And he walked over to his dad, held hands and got in the car easy. We went back to the hotel where he soon after fell asleep next to his daddy. It was a long day for him.

As the twins slept, I took the time to go shell hunting alone with N. It was so great to be out on the beach with the calming sound of the ocean,  now able to enjoy my oldest son in his element, exploring nature. We talked for two hours and I even let him have chocolate cake at 9 pm. Wild fun! Haha!

We hit a few rough batches today but over all, it was a good day.

We are blessed for sure. With love and dedication anything is possible!

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!

Fight to be heard!

There is nothing more frustrating in my experience then when you are telling someone what would work best for your child and they don't listen. The experts think that they know best and you are left struggling to follow along or fight to be heard.

This was happening with my son, E. He recently moved to a new school because I felt he wasn't being treated correctly at the prior school. That they kept stuffing him into a room and not taking the time to hear him. They simply muffled his voice when all he wanted was for someone to hear him and talk to him. Whatever attempts the teacher and administration made only seemed to make things worse. Suddenly he wasn't trusting people, responding as if he was going to be grabbed or hit if you approached him to abruptly. I was angry and motivated to help him.

Every day we received either a phone call or a message about his unwanted, negative behavior. Though I welcome communication from the teacher and the school whether it be positive or negative, it was almost always, negative. I could handle the negative if there was an attempt at a solution but by the end, I saw nothing. I just wish they were making the effort to hear him out.

At the new school, he is making amazing strides and catching up to where he needed to be quite quickly. Honestly, we knew he had it in him and were so frustrated with the system, that we nearly gave up on the system and took him out of public school. It wasn’t only because I went and spoke to the district that we now see change...change came because those at district level are truly impassioned by the children they serve. The new teacher has taken it upon herself to really pay attention to E. Taking the time to figure out how he thinks as an individual. She often tells me about the funny things he has said throughout the day or about the things that upset him. The principal is always engaged with his class and is learning how each child in that classroom functions. Despite some difficult days, he is transitioning superbly and is happy to go to school.

All of this is happening because someone took the time to listen. People are taking a moment to listen to my son and not force him to do something he doesn’t understand. This willingness and patience to talk it through or just listen, is what is helping the most. Finding the right people that care enough to help us was key, the district did that for us and for that I am forever grateful.

Now he is showing all his potential. For Down Syndrome day he introduced his little classmate and then closed the presentation. He said to me that he was going to say a speech for his friend Ari. It melted my heart that he said "his friend" and that he was so motivated to celebrate her. This is all thanks to the school. They gave him a place where he can be himself. That feeling of acceptance is helping him have the confidence he needed to start on a path of doing great things.

He still has his days, but no where near as bad as the last school. Parents, don't forget how important it is to be the voice for your child(ren) especially for those that are unable to verbally express their feelings. Whenever possible teach them that their feelings, needs and thoughts matter. That being  shoved into a room and closing the door behind them isn’t solving a problem, it is only masking it. Don’t be scared to voice your opinions or to stand up for your child. Advocacy should always start at home.

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!

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!

Divine Intervention

This afternoon I was feeling really low, after I was told my son would not be able to stay in his current Occupational Therapy sessions unless I signed a Safety Agreement. The agreement is to protect the staff and patients from him. Ultimately it says, they would kick him out if he showed any aggressive behavior and or possibly call the police, if warranted.

You hear it and you get it, they have to protect themselves and the other patients. I even went in thinking they were going to ask him to leave. Instead, I get a generic boiler plate. The wording enraged me. He’s 5, he’s Autistic and he is impulsive, with current aggressive outbursts emanating from behavior extinctions. A well trained staff would know how to deal with this. Working with an Autistic child that has aggressive tendencies can be challenging but you expect the professionals to be prepared to deal with such issues prior to taking them on as clients/patients.  Trust me, if I could change that about him, I would. I know no one ever wants to be hit by someone else. Believe me you, we have tried to help him and continue to try each and every day. 

This place has been working with him for nearly two years now. He has a major meltdown and they just sit me down next visit and give me a letter. I sat there for as long as I could, then just got up as they talked, told them I would look it over, maintained politeness and just walked away. I was scared for him while he received therapy that hour. I was not going to sign this letter. I wasn't going to give anyone the right to threaten me or my son with arrest for behavioral issues. With all they said and with what the agreement said, I just felt as though I was failing him. I felt awful and frustrated. 

Along comes a staff member, who recently started working with my son and tells me that she loves working with my child. She said “I really give it to you, after last week, I realized it can’t be easy and you’re such a great mom with them. I just love your kids. They are such good kids. You are doing such a great job. I don’t think I could do the same.”

She may not realize how much I needed to hear that at that moment. All I could tell her was that I appreciated her saying so. She provided the boost I needed to shake it off and do what I needed to do for my son. As he was receiving therapy, I decided it would be his last there. As he was working, I got to work too. I found a place that was properly trained to deal with a child like mine.

These things are often hard to hear though you understand the rationale behind it. You just hear your child is not achieving the required goals. Your child isn’t behaving like the other kids. Your child is not accepted. It’s crushing. And yes, I know they may have never actually said that to me but that’s what it comes down to in the end. He just doesn’t follow along. So they refuse to work with him, they discard him.

I can't be alone. Can I? Has this ever happened to any of you parents out there with a young child with Autism?

We clearly have our challenging days but we get through them and move on. Sometimes with a little push of support from someone or maybe, just some divine intervention.  

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!

Outbursts can be a learning moment

Watching my son have therapy some days is a delight. He seems to be on point and his behavior is calm and attentive. Often, E will be laughing and giggling with his therapist. But when he is out of sync with himself and therapist, it becomes far from a delight and more of a tense and painful situation to watch. 

Today E was receiving his speech therapy and I really thought it would be easy sailing for this session and it was, eventually. When he wants what he wants and is unwilling to transition and return to therapy, rejecting to sit is when things become challenging. Refusing to cooperate isn't uncommon for even a “typical” kid. For an autistic child, it can easily be a trigger into a long uncontrollable tantrum. In our case, it is currently dealing with fighting, screaming, head butting, hair pulling and the occasional biting. They can range from one minute to twenty minutes. Sometimes, we have no idea what has triggered him off and it can happen anywhere and at any given time. 

When you see your child behaving this way there is a level of embarrassment but also desperation to help them gain control of themselves. I want to scoop him up and soothe him but I would be doing him an injustice. He needs to learn how to calm down, to control his thoughts and body in order to get himself to hear what others are asking of him. Examples of what I say are “E, look at me” or “E, calm please, calm.”

For me, I find that “E, look at me.” is a great starting point to get him to calm himself. I whisper it so he focuses more on my voice, then I follow up with the request. Once I have his attention, I say it again followed by “calm please”.  Sometimes it works right away, other times it takes what feels like an eternity making me feel like an epic failure. While he is working on calming, my internal volcano is reaching its eruption point. 

Ironically, we must incorporate the same rules for ourselves. My husband and I will tag in or tag out like wrestlers when we see that one's frustration level or tolerance has maxed out and take a breather. This is the thing about parenting, that if you're fortunate enough to have someone to tag in it's helpful. If not, I give all you single parents big props because it's not easy. Each moment with our kids is a teaching moment from us but also for us. If we show them how to stay calm they learn. And of course, when I erupt like Mount Tambora, they are watching and absorbing mamas’ actions. 

Just as I don't expect my children to be perfect, they know and see that their parents aren't either. I take blame and show that I am remorseful. After all, we are trying to raise caring human beings. So after my son has his outburst or tantrum, he almost always says “I sorry mama.” If not, we explain him what he has done and ask him to say sorry. 

A few days ago, my son had a really big outburst because I wouldn't let him run into the street. He tossed himself onto the ground in tantrum mode. As I tried to block him from crawling to the street, he bit my leg, mad dog style. It was awful. Not because he was biting me, all though that was painful. It was because part of me thought, “My God, what must the neighbors think?” He was out of control and my frustration and embarrassment grew. I grabbed him and caught myself. I was worried about the wrong thing. I needed to refocus on E and not care about neighbors. 

After I pried him off of my leg. I told him “No E, you hurt me. No biting. Calm please, calm.” And after several tries, he responded, “Calm, okay.” When we entered the house, I checked my wound to find my leg bleeding. I show him and repeated what I had told him outside. He looked at me said “Kiss?” Gave me a kiss and rubbed my leg “All better. Sorry mama.” And I am reminded that he is still not always in control of himself but learning. 

By no means am I claiming to be a great mom or that my experience will fit someone else's. I am merely sharing how things work or don't work for us, at the moment. I would love to hear from other parents on how they deal with outburst. What have you found to be successful with your child? What has been a teaching moment for you both or as a family?

With love and dedication anything is possible!

Coping with no sleep

When you have a baby you expect some sleepless nights. After all,  you have to tend to their every need. As they get older, you sleep longer because they are kind enough to catch on to the idea that sleep is good. Some kids with Autism Spectrum Disorder (ASD) just don't sleep. I have one of them.

Little E hasn't been sleeping through the night for the past year. His first year was rough then he seemed to adjust year two. He could stay asleep but had difficulty getting to sleep initially. Now at three, he falls asleep fast; he just doesn't seem to be able to stay asleep. Getting him to sleep is the easy part now because he no longer takes naps so he is exhausted. He just can't seem to stay asleep even though we give him Melatonin. We tried a weighted blanket but he doesn't seem to like it. We do the brushing, that doesn't seem to help much either though he allows me to do it more often now.  I have given massages, scalp rubs, joint compression, impact sensory play and what ever ideas we come across. He keeps waking up. Often around the same time, 1 am and awake until about 4 am, unless he winds up not going to sleep at all. Tonight I swaddled him because I heard that sometimes doing this can help kids with A.S.D. sleep. I am hopeful that this will work like it did when he was an infant but only time will tell.

I am sure E isn't making any real decision here regarding his lack of sleep. He has absolutely zero control here. He seems so tired but still very awake. I use the word loopy to describe him. He wants to be comforted and calmed but physically can seem to be battling his mind and body. He knows when it's time to sleep. At times, he will tell me "mommy, tired."  Our kids almost always go to sleep at the same time between 6:30 -7 pm. When he wakes up at night, I often can get him back to sleep but he doesn't stay asleep, he will keep waking. Sometimes these attempts to get him to lay back down or calm down can take hours. He only likes to sleep on the floor. VERY hard on my back. We do it because we want to give him what he needs but I worry we are ruining his sleep process and creating bad habits.

The worst part of his not getting sleep is that during the day E is so hard to deal with. He's cranky, indecisive, super moody, self injurious, aggressive and often has trouble focusing by the afternoon. He becomes impossible to deal with.  His behavior is out of control and it is so hard to remain calm at times. Let's not even get into how we the parents are doing with our lack of sleep. It is clearly not an easy situation to deal with. I want to help him. I just don't have all the information to do so and that for me is frustrating.

Coping with no sleep isn't a solution, so I try to do what I do best. Research, learn, and implement. Finding answers any way we can.

Articles and links:

Sleep Problems in Autism Explained

Put Sleep Difficulties to Bed: Advice for Parents with Children with Autism

The relationship between sleep and behavior in autism spectrum disorder (ASD): a review

Just a few helpful articles that led me down the rabbit whole. Theses articles provided me with some new information to go to my sons medical providers raising new questions and seeking more answers. I share them in hopes they can do the same for anyone actually reading this.

Should you have any suggestions for us to try and implement, please share with us what you have tried and how it worked out for you.


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Thanks for following and have a blessed day.

With Love and dedication, anything is possible!