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!

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!

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!

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!