Where Do I Begin

A sunset by my daughter.

Where do I begin? Unless you have been under a rock, I think you all know that we are dealing with school closings do to the Covid-19 outbreak. The pandemic has clearly changed OUR lives. In-between trying to keep everyone healthy and safe, we are also trying to keep our sanity while educating our kids.

When it comes to my children’s education, I like to think of myself of as an involved parent. I do the homework, we read the books and we are forced to over-explain things, often. Then came the Coronavirus and homeschooling. It’s not that it is hard work because my kids are still young so it’s your basic school stuff right now. What is hard, is getting three kids, two with special needs, to focus long enough to get the list of items requested done. This is where my new found appreciation comes in for teachers. They have a class, sometimes up to 26 kids and they find a way to get it all done. My hats off to them.

My biggest challenges are while working with E and keeping them all engaged. Before all of these shut downs, E was spending three quarters of his day in General Education and seemingly getting the work done while getting along. His support was strong and about to get stronger. So this has absolutely put a spoke in our wheels making any successes gained come to a crashing halt. Add to that the new stress of the abrupt schedule change, the emotional and behavioral issues present with E and being told to sit down to work at home has been difficult for all. 

What missing. 

Socialization:

The kids are missing their teachers and classmate interactions. Zoom conference meetings just stress E out more, or over excite N. They leave E frustrated,  as he doesn’t understand the rules. N thinks its like an online show, a time to be a clown. Cleary not the same as in a school setting. E can raise his hand but the teacher may not notice him in the sea of screen faces. This is why we have chosen to no longer do Zoom meetings daily with his General Education teacher. She is awesome and means well but it’s asking a lot for a boy like E. Hands on play with peers helps him a great deal with understanding the rules of the world. He can in real time learn as he goes with teacher or Instructional Assistant there to guide when needed. Where as on an online platform,  it makes it harder to notice or meet his needs.

Structure:

Then their missing the structure of the day.  Kids like E and N, thrive off of knowing what is coming next. Even your typical child takes something away from having structure in their lives. That’s one of the reasons why my oldest likes to read the last chapter of a book first, to reduce the anxiety of the unknown. 

At home, I have always tried to keep some structure but it was easy. I only had them for a few hours during the week before our bedtime routine begins. My kids normally are carted off to bed by 6:30, asleep by 7:30 latest. Most days. Now, I have all these hours to fill and we are all left struggling to either fill the time or find a pattern that works best for us all. I now try to use school language like “It’s PE time” or “Time to do some related arts.”to help ease transitions in the home. Yet with access to technology it has made it hard to keep them on task. YouTube assignments very quickly turn into Ryans Toy Review or Hobby Kids if you aren’t watching with them. So it’s eyes on all, as much as possible.

Support:

E is absolutely missing the trained support that he needs to help get him through a structured day. With less structure, come opportunities for building bad habits. He has an amazing team at school. From his Special Education teacher, General Education teacher, Instructional Assistant and the Districts Special Education Consultants but now he doesn’t have his teacher the way he did before. The IA isn’t there to give him the one on one instruction he needs, it’s all me. They have one way of handling him that works and I feel as though I am messing that all up. The Special Education teacher has done an amazing job of making sure his education tools are there for him. However, he is still lacking some therapy support. With his behavior issues, I find myself struggling some days to get things right.  E is missing out on Occupational Therapy and ABA. I have now become both of those things. Thankfully, he is currently receiving private speech at home online.   When I will get the boys back to private OT during this era is unknown. 

As we complete our second homeschooling packet, now what? We push forward the best we can. Getting a bit more organized each time and reach out more when help is needed but knowing it won’t be the same. It is a flawed system for kids who need support along with their education like mine. They just won’t be receiving those services.  How could they? It’s a brave new world and it seems those who were to supposed to NOT be left behind, are without the right support.

You become great at juggling, doing the best I can from kid to kid, hoping I am doing it right. So I do what I can to make the learning experience as fun us possible, developing my own creative ways to teach them, in addition to the packets they are expecting us to complete. 

Gardening teaches life cycle of plants

Online education built around games (Thanks to teachers!)

Observing things in nature and then learning about them.

As well as life skills. I am teaching how to do the laundry, wash dishes, weed the lawn (E is already an expert at this), scramble eggs and microwave popcorn safely. Small but age appropriate things that can benefit them in the future. Working hard with them to teach the constant need to clean hands.

For now, we push forward trying to find best solutions for all. Managing each child individually, trying to meet those specific needs while working on the school districts General Education requests. It’s not optimal, but it’s something. I remain in contact with all their teachers and make sure to build some special memories for them as well. I realize it can’t be all work, all the time. 

I would love to have my kids go back to school but not until we can get a handle on this virus. For now, I am glad they are home safe with us. If homeschooling is the best way to keep them healthy, then I will do it for as longs as it’s needed. 

My prayers are with the world right now. That you are fairing well throughout this new era. Thank your teachers and the people placing themselves at risk to help others. Be thankful for the life you have been given and grateful for each new day. This is a moment in time that will hopefully change the world for the better.

Would love to hear some thoughts from other parents or suggestions from teachers or therapist to help guide us through this.

We are blessed for sure!

With love and dedication anything is possible!

Goodbye 2019

Goodbye 2019

You never go into a new year expecting that things will go poorly, it’s about hopes and dreams, wishes and plans for the future. 2019 was a year that presented many challenges and some personal hits to our family.

If you follow my blog you know that my youngest son had a lot happen to him this past year and has been struggling to get back on track. We have been dealing with a great deal of outburst and unexplained emotional meltdowns. It’s been hard because I constantly have to figure out how to approach the behaviors. Is it trauma or just being difficult? How do I approach and deal with him? I’ve chosen to continue the positive parenting approach with “Love and Logic” talking it through while trying to remain quiet, tolerant and calm. He slowly is showing signs of recovery but it’s a journey for us all and it will take time.

Me and Pa New Years Eve 12/2019

 What I haven’t shared with you is that my father was diagnosed with Stage IV Esophageal Cancer at 78 years of age. In the summer, he was told if he chose not to receive treatment, he would likely be dead in four months. 4 months! He asked the doctor “Could you give me one more Christmas with the kids?” The doctor simply said “We can try.”  So dad braved the 12 treatments and we celebrated his last of the first round on his 79th birthday in November. Then Christmas, with most of the immediate family present. We brought in a New Year with him and I know he felt blessed to still be here to do that. We are certainly not trying to take this time for granted, even though sometimes it is easier to forget and pretend like things are okay. I realize our time is limited. It always is really, each day we get a bit closer to our end. However, I’m choosing not to squander our days with the family. I always say “I love you” because I never want him to think even for a second that I never did or that I lapsed in my care for him. He has been my rock and now all I can do is try to be his.

When asked what was I most grateful for in 2019, I joke that it is over but that isn’t the truth. I never would have dreamt any of this for us but life has a way of steering its own path for us sometimes. The news received was like a one two punch to the gut, each time it felt like my heart was being  squeezed out of me. Yet, there have been lessons to take away from this pain. My son has taught me so much, even in the worst of what he is going through. Love is the reason for everything. It can hurt when you love so intensely but it can also give you the comfort and the strength you need to fight for what matters. I do it for my son and my father is doing it for us. I fight for my sons well being. My dad is fighting for his, so that we can have one more day, one more joke,  one more hug, one more I love you with him. We undoubtedly will take them anyway we can get them.

So yes, it was a hard year, and maybe 2020 will still present its challenges, my son still has healing to do, as do I. My father still has a fight ahead of him but he’s doing it with a smile, most days and a purpose. I see strength from both this young boy and this old man. They teach me resilience, the power of prayer and endless love.

What do I wish for in 2020? That love continue to guide us and heal us all. That family be the center and focus in our lives. That love fill our hearts and spread to those around us. To be grateful and to  not allow fear to stop us from achieving our goals in reaching for the stars.

Happy New Year friends. May the love in your hearts spread out to the world and make it better than the day before.

Feel free to share with me what you are grateful for this past year and what your hopes for the coming year are. I would love to hear it.

We are blessed for sure!

With love and dedication anything is possible!

Let kids be kids

So last night I was listening in to a conversation my eldest son and daughter were having about their brother. They were debating on why E likes to win so much and why we should or shouldn’t let him win all the time. Here’s just a bit of how it went.

N: I don’t think E has to win all the time because I like to win too. I don’t have to let him win.

EMC: N, you have to understand that E has Autism and he doesn’t understand yet how to control himself. His Autism makes it hard for him. He likes to win and gets angry if you don’t let him. He likes to play tricks. That’s his way of having fun. That’s why when he races he says “look behind you there’s a monster.” He just wants to play his way.

N: Well I don’t see why we have to play his way, I like to win. I don’t have to let him.

EMC: It is okay to lose N. That’s how you learn to try harder.

N: Then why don’t we let him lose? ANd why do you cry when you lose.

EMC: No one likes to lose. That’s why I get sad N. But when E loses he gets angry and hits because he has (Emphasis on) AUTISM and he has to learn. He doesn’t understand.

The way my daughter expressed herself was amazing and her mannerisms were classic “New Yorker”  just like her mom.  In any case, the conversation started to go in a loop both claiming they are right in their argument. Hearing how it was going  both valid arguments, my husband and I intervened attempting to assist them both come to so resolution so they can get to bed.

Technically, we can’t always win and it isn’t fair to always LET the other person win. So N was right about that. There is a great lesson to be learned when you lose. It can be the motivating force for you to try harder. Something we tell our kids all the time.  However, it is kind to let the other person think they have won in an effort to prevent or appease that person and not cause distress on them. Especially, when that person is still learning how to play socially.

Lord knows, we had stopped our game nights because E just blows up or can’t wait his turn being so impulsive. He needs to be in control. I’m thinking it is now time to start them back and walk him through the process, social expectations, win or lose. While also teaching the other kids that it is better to practice patience and understanding then to feel as though you have surrendered yourself up to someone else’s wants or wishes. Kindness is the most important lesson for ALL three to take away from this conversation and future play.

So this brought up the question, is it okay for my daughter to let her brother win for the benefit of keeping him happy? She thinks she is helping him learn how to play.  Or is my son right, that it is better to play fair, win or lose? Share your thoughts with me on how you handle a young child who is just learning to play and accepting losses.

We are blessed for sure!

With love and dedication anything is possible!

A question of safety

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

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

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

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

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

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

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

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

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

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

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

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

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

We are blessed for sure!

With love and dedication anything is possible!

Messy Layer Cake

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

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

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

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

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

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

We are blessed for sure!

With love and dedication anything is possible!

Back to School already?!

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The start of the morning was the same as it has been all summer, kids crawling into our bed, wanting extra cuddles and trying to get a bit more sleep. My daughter and my oldest boy starting looking for a way around going to school. As if there was a way out of it. With all the energy I could muster at 5:45 am I said “OH NO! It’s first day of school and we are not starting the year off wrong. Happy faces and lets get going.” My youngest son however, ignored the siren alarms of his clocks. When I walked in, he went and turned off his light and said “It’s too early and I too tired. I going back to sleep.” Eventually, I was able to evict him from his room and get the day started.

Even with a daily chart that lists EVERYTHING he is supposed to do, N just couldn’t get going or didn’t want to. He wanted to have a debate on what he wanted to now wear and a discussion on how the girls were going to love him this year. LOL! To which my response was “Ummm, NO!” And I moved him along to the bathroom to complete his am routine. He cracks me up. We took our first day of school pictures.  I couldn’t fit it in but in addition to his wanting to be a veterinarian, he wants to be a paleontologist. I reminded him that school was the way to get there. After breakfast, he danced and hopped in the car to make a start for a brand new year but not until he blew me a kiss and said “Make good changes in the world.” Oh my heart loves him so.

My daughter, who is almost always the first to be dressed was ready to go and looked dazzling this am. There was a bit of whinnying but she slowly started to show her joy about the start of the school year. She looked so cute,  wearing her frilly skirt and laced top. Ready to take on the school and show them what she’s got. She couldn’t be happier.  I asked her what she wanted to be when she grew up and she said to no surprise “Artist and MARINE” That last part was a surprise but I think her father coached her into saying it, so I didn’t add it to the board. We had breakfast, did our morning group dance and off we went for drop off. I love dancing with them all in the morning but she looked so happy it was contagious.

Dad would take care of drop off for my daughter and oldest son, while I got E ready for his drop off. He didn’t want to eat breakfast so that would be a meal he would have in the car. He happily allowed me to take a picture and insisted on how to take the group shot. He is an awesome little boy. Then he fought a bit about what sneakers he would wear but he surrendered once we told him that the old sneakers were dirty. We danced to his favorite song from Bon Jovi “You Give Love a Bad Name” and off we went.

On the way there, E asked me “Mama, Am i going to Mr. M?” I assured him he was not going back to that old school and would never see Mr. M again. I could sense his fear as we drove to school. He asked again “Mama, Am i going to my old school?” I again assured him that he was going with the “Nice teacher, Mrs. Lewis” As we approached the road to his school, he said “I think I remember this school” and I just did my best to keep reassuring him that he was going to be okay. That I would NEVER let him go back to that school. We drove up to the drop off and he refused to get out even with me at the door.  As the teacher walked over, I told the teacher that he needed to see her and what he was experiencing. When he saw her, he allowed the door to stay unlocked, I opened the door and he let out a sigh of relief and said “High five Mrs. Lewis?” She gave him that high five and told him he would be okay. With all the things he forgets, this wasn’t an experience easily forgotten. I wanted to cry. Even as I write this I want to cry. What he must have suffered to still fear that place and that man. And when think I played a part in it, it just tears at me. He put his book bag on, walked over to give me a kiss and said “Bye Mama” smiled his big smile and disappeared behind the door. My sweet ‘possum.

My daughter had asked me if I was going to be happy with them going back to school and though I joke with them, I told her “Mama likes when you go to school because I know you are learning and able to play with friends but Mama will also miss you because I love having you near too.”  It isn’t easy leaving them in the hands of others. Especially after the year E had last school year. He isn’t the only one that has to learn to trust again. I just keep praying for a better outcome while vigantly doing my best to keep them all safe.

Here is to hoping and praying that they have a safe and happy school year.

We are blessed for sure.

With love and dedication anything is possible!

Check out day

  

It was our last day and we planned to make the best of it. The night before we told the kids the plan. As soon as we woke up we were to get in our beach where and head out to the beach for one hour followed by the pool for another hour. This would give us enough time to go back to room, wash up and clear out. Plan ago. We were up early, as usual, so we headed out to the beach as planned with the kids and sand buckets. 

Things were going well. The beach was fairly empty still and the kids were having great fun. E had seemed to learn to stay closer to the shore line after a wave toppled him over yesterday. He mostly played with the sand trying to build a mote. N was flopping around in the water still looking for shells, lava rocks and bits or coral. My daughter was in her glory playing with two little babies digging in the sand. Everything was calm and all appeared to be happy.

Then, without warning E took off down the beach. I called for him to turn back but he didn’t listen. He just kept running following the shore line, so at this point I now had to become an Olympic sprinter and start after him. Gosh, it is terribly difficult running in sand and my feet are torn up from all the broken seashells I stepped on during the chase. Finally, I grab him. Thankfully, he gets to close to the water and a wave hits him and slows him down. After I catch my breath, while still holding him, I ask him “Why did you run away?” He just looked at me and laughed “I was going on an adventure.” I began to tell him about the dangers of running into the ocean alone. That he doesn’t know how to swim and if something happened maybe we wouldn’t be able to help him. I asked him “what happens if you go in the water and you can’t swim? He replied “I would drown.”  So he gets it but why he doesn’t follow the rules is beyond me. My husband says he is fearless and it’s true but he is also wreck-less. Then again, he is only 6. We left the beach after this. I was done.

As I played in the pool with the kids, I thought about what could have set him off on his run. He doesn’t like the sand feeling, the birds were flying over, the crowd was starting to grow and there were more voices near by, the crashing of the waves, the wind was blowing and his sister was screeching.  That couldn’t of been it because he said he was “going on an adventure.” He may possibly have an ear infection again, those often make him unsettled. Or maybe he just felt like running. Though he is improving, E’s explications are never solid, so I may never know.

I see parents lounging back on beach chairs and their kids playing nice on the beach. Staying close or

Sprinting position

constantly checking in while their parents read or close their eyes. Their is a trust their and a level of comfort we do not have with our kids. I was able to do it with N and EM more this trip but E just kept me up on guard. Seeing this often makes me question the type of parent I am. Maybe I’m not as good as those parents. That I’m not doing something right. Then I brush away those negative thoughts and move on. I watched as he played in the sand. He was content but always looked like he was prepared to sprint off at any given moment. Which he did end up doing. It must be nice to sit back like that, enjoy the sounds of the beach and just be in a relaxed state. Those parents don’t realize how lucky they are to have those moments come easy. I long for that day. I believe it will come but with a great deal of hard work on our end. Well worth it if we can get him their.

There were a few outbursts in the car and likely from being locked down for so long. Despite some of the stresses of the trip, overall, we had a great trip. The kids were happy and we were happy to give them this experience. The more we expose them to things, the better their chances are of having a full and happy life that prepares them for the real world because the real world is rough.

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!

Second guessing myself

You ever have an experience where your child has nearly convinced you that you are loosing your mind. Well recently, that is exactly what my oldest son did to me.

The kids have been going to camp and it involves a great deal of running around because they all go to different camps specific to their likes or needs. This specific week was one where everyone had camp exactly at the same time. Two were attending the same camp but on separate parts of the campus and the other was cross town but all had to be there by 9 am. Needless to say I was dragging the kids along at an extreme pace.

Fortunately, I was able to drop of my youngest boy, E, to his camp a few minutes early which allowed me to get to the other camp just in time for it to start. Then I would rush to pick the older kids up so that I can get my youngest from camp and head back home.

How is it that when I arrive to pick up my oldest boy, N, he is barefoot. I think to myself, okay that is  gross but whatever,  I proceed to tell him to get his shoes on and snap my fingers at him. He tells me “I don’t have shoes.” Then we start this back and forth, where I tell him he had shoes and he insist that he didn’t. I ask one of the adults where his shoes are and she tells me “He says he came with no shoes.” You ever have that feeling where all you can do is cringe at the things your children say out in public?

You could only imagine how embarrassed I was to hear that my child is telling people that I, his mother, sent him to camp with no shoes. NO SHOES! Telling EVERYONE that asked him that his mom sent him with no shoes. Now not only am I now mortified that he is making me look like the insane mother of the year but I am also starting to question whether or not I actually did forget to check to see if he had shoes on. I mean it wouldn’t be the first time we leave the house and have to turn around because someone forgot to put on shoes or PANTS! Happens way to often.

Either way, I get into a continued back and forth that he came to school with slip on shoes and they have to be here somewhere. We all begin the search while N is still insisting that he didn’t have shoes on today. Finally, we retrieve the shoes and he then isn’t convinced they are his until he tries them on. Because finding them and seeing them isn’t enough to convince him yet, he says he has to “Try them on and see if they are his.” UGH! I don’t know who I wanted to slap more, him for making me look and feel bad or myself for even allowing him to get into my head and make me second guess myself. I knew I sent that boy to camp with shoes. In the end, he tries them on as if he was Cinderella and says “Oh yeah, I guess I did have shoes on today.” Really, you don’t say.

Thankfully the camp counselor was really nice about it and I walked away slightly reassured that she didn’t think I was the worst mom ever.

Click link for a video recap of our experience.Where are the shoes


In the end, I learned something. Laugh. At one moment I felt like I was about to whack him upside his head but then I just started laughing. I mean he can’t help it, he sometimes is just forgetful and we have all had those moments. Right? Lord knows, I have lost my glasses plenty of times and they were sitting on my face. So I just had to laugh and we continued to laugh about it long after...together.

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!

Losing my help

It has always been so hard for me to let strangers into my home to provide therapies to my son. Obviously I had to be okay with it, he needed the help.  Bedtime became a juggling routine with the three kids all demanding my time. Shower time was easy, I took away baths and put in place a shower routine. Bath times are now special and mostly on weekends.  The running room from to room trying to read and tuck them into bed was still an issue. When I was at my highest point of stress, I surrendered to the idea that I needed an Aide to help us along, especially at bedtime.

Many came and went. One lady actually yelled at my son, in front of me, the first day she started. I was like “Hey NO! GOODBYE!” She was gone before she even really started. We just couldn’t find the right fit until a young girl by the name Holly came to us. She had the right energy and the best attitude to deal with him. She was a Godsend to us. She worked with us until very recently and became a part of the family. She lasted nearly a year before the commute and lack of pay became to much. She told me that she couldn’t continue and I understood though I was devastated. My son loves her, how could I not be. The argument she laid before me made sense. She already had a day job and the night job was just intended to be extra money that was now burning up her funds. It no longer made sense for her. So we said our good-byes for now and try to move on.

We brought in another aide and E really liked her. She was older and a mom with boys so she was able to keep up with the chaos my house can sometime run under. Only 4 days in and she tells me she will not be returning. I asked her did Ethan do something to upset you, was there something she felt she couldn’t deal with? The aide simply told me that this was a secondary job for her and that it was costing her more in gas then she was bringing in. So that was that, we once again were without an aide based on salary & expense. I’m really surprised how these agencies don’t reimburse at least some of the gas expense. If they had done that, it would have made all the difference for us.

We have been through a great deal of aides either because of personal chemistry between my son and them or salary/travel expenses. Now the summer is here and I have no one to assist Us. I’ve gone back to being unable to cook dinner and the crazy of bedtime routine is reaching melting point. I often feel guilty if I don’t get a chance to read to each of them. I have tried to read one book to all three at a time but since they are all at different reading levels, it presents its challenges. Also, its the time of day that I like to catch up on the kids day. Discuss privately any issues they may be having or just give that little extra time one on one. Often, I feel like a horrible mom when someone falls asleep before I am even able to give a kiss goodnight.  It’s clear to me I need a better system. It’s a challenge, I have always loved a good challenge so I have confidence I will figure it out...eventually. In the meantime, the hunt for the “Right” health aide to assist us is on.

Wish us luck.


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!