Acceptance

When you find out you're going to be a parent there's a mix of fear and excitement that comes over you. You start planning all these wonderful things and hoping that this child will be able to do such great things in the world. The fear is mostly the worry of the health of child and birth. Also, what the future will hold for them. When you find out that your child is going to have a disability, there's this other fear that occupies your mind. Some of those dreams you had for them get clouded or disappear. You feel crushed, broken even. You worry how will they function, how will you manage, how can they survive without you, how do they live  within a world that doesn't understand or accept them?

When we found out that the boys had Autism, it changed everything. All the plans and dreams we had for them, in am instant changed. I felt those dreams for them slipping away but already familiar with Autism through family members, I knew this was not a sentence. You have to quickly push yourself into acceptance. I gave myself 10 minutes to mourn the dreams I had for my sons and work to accept the dreams that they would have for themselves. They would reach their maximum potential and I would support them every step of the way.

I went into fix it mode. The let’s tackle it head on and find away. For their dad, it took a little longer and some days he still struggles with the fact that our youngest son may not adapt to society's norms the way we had hoped. We worry that both boys may not always “fit in”. Since we can't always make society accept them the way they are, we have to prepare them for the world outside their heads. That's not an easy pill to swallow. To know that your child may not have a lot of friends or any. That you talk and they may not always be with you despite being in the same room as you. That you discipline and it goes unnoticed. That you make a joke and they don't get it. That you can give instructions and they can forget it a minute later. That they don’t understand why you are constantly instructing or placing demands on them. It's not easy for either side. 

Yet, if you love. Love them as much as they love you and more, the walls will come down. Their eyes brighten and their smiles gleam. They connect through love. Love what they love and be apart of their world. Acceptance WILL come for you both, you will connect and you WILL be a better parent for it.

Here is a link to a short Pixar film that was created by a father, Bobby Rubio, who was having difficulty connecting and accepting the reality of his sons diagnosis of Autism. He expresses his journey in such a poetic way, that I had to share with you today. This is just a brief trailer but impactful.

https://youtu.be/xu0UmLzClus

I highly recommend that you watch this short film if you have the opportunity to.  You can find it on Disney+ Pixar short films. I only wish I had the link to the actual short so that you can actually watch it for yourselves. They really should be available to everyone, it's beautiful. Pixar is doing a wonderful job with the telling of these shorts stories. Be sure to also watch Wind and Loop, two great little films that carry quite the powerful message. 

Being a parents is hard and, we can be critical of ourselves. Being a parent with a child with differences isn’t any easier. There are days where all I can do is laugh, cry. Where I can lose it and, regret every word or action. Wanting your child to fit in comes from the fear of not being accepted. Society doesn’t bend to them, they bend to society. You want to protect them, but they may not see it that way. Considering this, let’s give our kids a break to be themselves, rejoice in it. Remember, the world will be hard enough on them, they don’t have feel like outsiders in their own home. Family is supposed to be their safe place, a place where they can be just who they are. Make sure you give them that. 

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!

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!

Bubbles.

Just the other day I was thinking the back when I went in to get my son initially evaluated for disabilities. I remember walking into this brick government building that had the smell of stale air trapped in it. An older gentleman walked us back to a room where I was to answer several questions about my sons behavior, development, those kinds of things.

He was in a little corner playing with some toys and I was answering the man's questions. Something suddenly startled easy, something made him get up in a burst and start running around the table that we were at. As soon as I went to go grab him rather just before, he banged his head on the corner of the table. So hard I cringed as I felt his pain. But he, he did not. He wanted to continue running around the room as if nothing happened and it broke my heart. Most parents would want their child not to get hurt and it is true that I didn't want him to get hurt but I didn't want him to feel at that moment. I would've given anything for him to feel what just happened to him. 

The man doing the evaluation, looked at me and asked "do things like this happen often?"I put my head down and said yes. After bringing me some ice for his head, he said to me that there was one more test he wanted to do, that I could be in the room but I was to not encourage or participate with my child. But if I found it difficult I could sit on my hands if the child came to me. I was to not speak speak for him or engage with him during this time. I agreed and we started. We then walked over to a smaller room one that reminded me of the ones you see in the movies where the insane person is capped and there's just a small window to peek on them. We went in I sat down in the chair in the corner and immediately sat on my hands knowing that it would be difficult for me not to want to hold my son when he came to me. At this time, I was the only person he saw it but rarely wanted me to touch him. 

Screener began to try to engage my son and play but he would not. The man pulled out some bubbles begin to blow them. Nothing In between blowing he would tell me "children love bubbles. They can't help themselves, it automatically brings joy out in them." He blew more bubbles. My son did not look at the bubbles, did not try to pop the bubbles, kept on as if they weren't even there. Afterwords the screener run is back to the original room where E had hurt his head. It was there that he told me that my son likely had autism. It was there that I felt my heart grieve. Ignorantly, I felt nothing but pain and loss of a dream for him. As a mother when you're pregnant you think of all the possibilities this child will have. Of what they will look like when they grow older, how they will be or who they will become. You never expect or plan for things to go wrong or be different. At that point all I knew or felt was that I had to prepare for a life with a child who would be different. The man looked at me before he left and he put his hand on my shoulder and told me "my son has autism. I have never heard his voice. He lives in a small apartment and has a small job. He a health aide that checks on him regularly as do I but he's independent.This is not the end for your sons future, do not let it be." if he only knew how much of a gift that statement was to me. 

Having gone through many of the early struggles of acceptance, I began fighting for all that I could do for him so that he could reach every bit of his potential, if not more. Doing this has been worth it. Today, E is outside playing with his brother and sister. Actually engaged in play with them. I am reminded of this day and I wanted to share it with you. Here we were blowing bubbles and I was able  to watch him run in his sisters rain boots and play with his siblings, chasing after bubbles. Popping them and smiling with joy. It filled my heart and reminded me how far we have come. 

The pre-screening was hard. Probably even harder than the day we actually got his clinical diagnosis. The positive is that it prepared me and taught me that I need to fight for my son. That 10 minutes of wallowing was enough. That from the moment he was diagnosed, I have done nothing but what I thought was best for him. And if all he ever did was chase bubbles for the rest of his life, I'd still know that he traveled leaps and bounds to get here.

Once I was told I would never have children, now I have three. Today, it's bubbles, tomorrow...the moon!

We are blessed for sure.

With love and dedication anything is possible!

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!

Ask and you shall receive

Remember how a couple of posts back I was joking about needing to get away. Well, ask and you shall receive. My husband surprised me with an impromptu vacation. It’s really more like a trip because of the time constraints and because a vacation for me would be without the kids. 

Traveling with the kids is rough. First they never stop asking the famous “Are we there yet?” They NEVER go to the bathroom at the same time, and one wants the radio on while the other wants it off. It’s too cold, It’s too hot. I think you get it. My daughter loves to sing in a high pitch operatic voice that reminds me of the movie where Meryl Streep portrays a woman described as the worst opera singer of all time. Now, don’t get me wrong, when my daughter sings in her normal sweet voice, she sounds like an angel. Lately, I think she has been exploring pitch and she is way high, to the point of piercing. As I write this, she is testing out her sounds. Fun! Do we discourage this? No. I want her to sing even if she sometimes hits a sour note or two. It’s my reminder that she is happy and that my ears are functioning. 

Finally, we made it to Myrtle Beach but still had another 30 minutes to get our hotel. So we took the kids to to a great little park called Savannah’s Playground to burn off some energy. It had your typical playground equipment but other cool stuff. Most importantly it had a six foot fence around it. It’s probably one of the first parks I ever felt comfortable going to. It had some really cool slides and a zip line for the kids. The kids loved it. E was in his element. The park is known as a great sensory park for special needs kids but is open for all. And then...

We went to the hotel where E went nuts. The kids were already excited about being at the beach and that the hotel had its own water park. E was over-the-top. His enthusiasm could not be contained. He was opening and slamming draws and cabinet doors. Screaming with joy because the hotel room had it’s own spoons and toaster. So as we changed clothes for the water park, I began to realize that this could potentially go south fast but I wanted to be optimistic and have fun. My goal was to be calm mom and not get anxious. We were fine up until we walked on to the water park grounds. The minute he saw the giant slide his eyes opened wide as did mine but for very different reasons. He was thinking that thing is going to be amazing. My thoughts were more along the lines of this 20 foot slide is going to be the cause of my aneurysm. I chased up the later with him and tried to seem excited. When we reached the top I was still hopeful that the man would tell us your too short. Took the measurements and I wasn’t so lucky. E sits on the slide and pushes himself. Sitting up instead of laying flat on his back, he takes the first curve and nearly flips out of the tube. Then he is flipped backwards and I saw a glimmer of panic in his eye but he hits another turn, where he flips again and it turns him around, then splash. He loves it! Meanwhile I am a horrible anxious mess thinking that I could have lost him on that first curve. He didn’t care, he wanted to do it again.

So needless to say I am extremely stressed out at this point. I figure if we could just get him in the pool and keep him there, I might be able to salvage this trip. N keeps swimming over to me to check on me because he “Don’t like how your face looks right now Mama. I’m worried for you.” I try to reassure him, but I know he is right. Because what I was feeling was straight anxiety over lack of control. Truthfully, it was my lack of control over E. I could see the park was having its affects on him. When my husband held his hand to get his attention and remind him of the rules. His legs looked like they want to leave his body and walk away with out him. He was on sensory overload. I knew I needed to get him in a quiet place but he was also trying to have his best version of fun. It just involved him running in and out of pool or at some points, jumping into shallow pools including a jacuzzi. I was so done. I wanted to scream DONE and leave. Not an option, I still had the other two who were having fun. So I stuck with it with the hopes that eventually he would even out and he did.

We finally got to a place where we were all in the same place and wanted to stay there. From there I started to feel my chest relax and i was able to take control of my breathes again. Though the start was challenging, it ended on a high note. Not to say that anxiety isn't the captain of my ship, it is still in control. While he sleeps all I can think about is how to keep him from the balcony or oven, I might then be able to go to sleep.

Still a day and a half to go, so lets see what tomorrow brings. For now, we are all curled up, and i’m Doing my best to appreciate the good parts of the 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!

Father’s Day

This past Sunday it was Father's day, and we spent the day with my dad. We surrounded him with lots of love, food, family and laughter.This year, I had such a hard time picking out a card for him. What kind of card could I find that would show how grateful I have been to have him in my life and thankful for all he has done for me. I figured he had seen his fair share of fart joke cards to last a lifetime and I wanted my words to mean something. So instead of a card, I’m writing this for him. 

Father's Day is that gentle reminder of just how much our dads mean to us. We are supposed to rush out  to the stores and buy them all kinds of “Hallmark” marketed items and this year I knew I needed to do more.

When I was Child, I adored my dad and as a teenager, I fought with him. As an adult, I was able to see my father differently, forgive his wrong doings and become friends with him. He may not realize it but within the past 6 years, he has become my best friend. He's the person I go to when I seek advice, comfort, media updates or just a good laugh. I like to think as an adult, I haven’t squandered a moment with him.

Now that he's reached his later years and is battling age and life,  I only hope that I can be the love and support that he needs because he has given that to me.

Dad when you read this, I hope you know just how much you mean to me, how much I love you, and how much my children love you. That you realize how grateful I am for all you have done for us. As my father you made sure that we always had a roof over our head and that we never went without. As a grandfather, you subbed in as a temporary dad when it was necessary and became my sons best friend too. My children love you so much and that fills my heart as I know it does yours. 

So to you dad, I'd like to say on this thanks for getting better with age. For always loving me even when I didn't appreciate what I had before me. For teaching me the love of baseball and that there was nothing wrong with having my own opinions. For helping me become the strong, independent woman I am today. For being my strength when I lacked it, the voice of reason when by temper got the best of me but most of all, for becoming my friend.

I love you dad!!

https://photos.app.goo.gl/EACREYCetvUzvEpF8

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!

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!

SFM- Summer Fatigued Mom

You know that first time you take your kid to preschool or kindergarten and you are just balling because you are so sad over letting go. That your sweet baby is growing up so you just burst into tears?

Well, I am so over that! Now I a praying for school to start back up. At this point, I am tired of serving meals, of answering a million and one questions, of reading the same book over and over, the arguing and knock out battles in the house, the "Mama!?,  It's my toy!, No, It's my toy!" You get to the point.  They take you to that place mentally where you just want to scream at all of them.  Pull at your hair, cry and hide in the pantry while eating something you know full well you have no business eating. Which by the way I do all of that, somedays I do one or two and other days, the challenging  days, I am yelling at the kids from the pantry, stuffing cookies in my face and and chanting "I love my children." 

Come on parents, you know what I am talking about? You love your kids and you actually love spending time with them but your learning the benefits of having them in intervals. School gives us that break. Especially for us stay-at-home parents. You spend the entire summer planning every moment of their day out. You make sure everyone gets to camp and the right camp on the right day for the right kid. Add any therapies to that and you officially are a taxi driver for the summer. If only my kids tipped.  And to top it off, while on a trip attempting to build memories, my eldest son guilted me into buying him a Hermit crab which is God awful looking and I am secretly praying it doesn't live the 20 years predicted. So I just added one more thing into my life for me to keep alive. (This one is on me!) It's exhausting!

With all that running around comes a crazy amount of stress and exhaustion. Add a few kids that never stop talking and or fighting and your just about done. Ready to send them back with their little book bags on and see them off for 8 beautiful hours.  Even as I right this, my daughter lays beside me crying and screaming that she wants to go see her grandmother, that it's not fair she doesn't get to go, despite her just being there all day yesterday.  Now I am not sure if this is an actual diagnosis,  I am not a doctor by any means but I call what I am experiencing SFM (Summer Fatigued Mom). I'm done!

Though I would like nothing more then to check out at least emotionally, I can not. So like all good parents, I grab a cup of Joe, maybe eat a few cookies that I shouldn't and keep on pushing on until school starts up again. I continue to say things throughout the day like "Oh that's great! Wow! Ah huh. STOP! What are you doing?!  Why did you just do that? What did you think was going to happen when you put the entire roll of paper in the toilet? No Unicorns aren't real. Yes, Santa is as real as you want him to be. Screaming doesn't change the fact that I'm still trying to ignore you. You see why they tell you NOT to put slime in your hair? " It can go on forever and it does. 

Hope you all are enjoying your summer and taking the time to fit in some special memories in the midst of all the madness.

We are blessed for sure.

With love and dedication, anything is possible!

PS- if you child asks you for a Hermit crab, say NO!

He squandered nothing

It's been raining a lot here since you passed which has only made my sadness more so. We bury you today, well, at least they do. I didn't make it back to see you in life and now, not even in death. Six years have past. I regret that you didn't get to see my children. For that I am sorry as I know you deserved more. They ensured me that you will be getting a grand send off, one I know you desired, with honor, dignity and faith.

You who were always so stern but kind to me. You never laid a hand on me, even when I was at my worst nor did you yell at me. Except for when you were trying to help me with math and you never helped me with math again. Sure you were grumpy but I always thought and still do "Isn't that just how old men are?" I always looked past that and always saw who you really were. You laughed with me, sometimes at me, but you laughed. You were caring and affectionate with me, I was one of the lucky ones who got to share moments with you that let me in and see another side of you. I will hold on to that memory. With you sitting on your porch, laughing with great joy and light beaming from your soul. How you would take us out for a morning donut and let us be us, while peaking over your morning paper. You gave us more then you know.

Your life was not always easy you said. That you were young and rebellious. That you had walked away from God and that you were doing everything to win his trust back. You gambled and womanized. You knew you had made mistakes as a husband and as a father. You broke your own promises and regretted those days. You went to War and assured yourself you never would but still felt you had squandered what you once said you wouldn't. Yet you found your way and got back on track.

You will be welcomed in the heavens and I know that you will find all that you lost awaiting you. Wife and son. Your pain and guilt washed away, all forgiven.

Your presence on this earth will be missed. I am grateful for the time I had with you and I pray that you will be there awaiting me when my turn comes. We all felt loved by you. I know I loved you and felt that love always returned. I know you knew this but I feel the world should too.

A great man is being buried today, his soul already lifted to the heavens. A son, a brother, a veteran, a husband, a father, a Grandfather, and a great grandfather who lived life, learned from it, prayed because of it and in the end squandered nothing.

I love you Abuelo! Que Dios te bendiga y nos vemos.

#RIP

A question about Autism

My daughter came up to me today and asked me a question. I was kind of taken off guard when she asked me this question and honestly at the moment, I didn't know how to respond to her. I didn't imagine that at four years old she would be asking me this already. I thought maybe I had at least two years before we dove into this. She asked me "Mama, why does Ethan always have to have the autism?"

We have had her watch Sesame Street's introduction of the new character Julia,  that has Autism. So she does know that E and N have Autism. She seemed to understand it, asked some questions and she seemed content with my answers. So it seems now, she has more.  I took a deep breath, took a moment to think about my answer and came up with this.

"Well, you see Pudding Bear (nickname), that's just the way God made him. It's not a bad thing, it's just the way he is."

She then told me "but I want him to be just like me." Hearing this kind of made me sad. Sure things would be easier if E didn't have Autism but I wouldn't trade him for anything. To me, he is perfect.

Then I told her this, "Just because someone isn't like you, doesn't make it a bad thing. Being different is what makes us all special in our own ways. Why don't we treat E like he doesn't have Autism. Treat him like you would want any one else to treat you. When you see he's having a tough day and a hard time, show him kindness, care, patience and love. That's all anyone really needs baby." I watched her as she thought about my answer.

She sat there quietly for about a minute, which is a lot for her, shrugged her shoulders and said "okay mama."

Then she walked over to her brother, patted him gently on the head and asked him if he would like her to put a movie on for him. She gave him a kiss on the head, walked away to get the remote and called me over to put his show on. It was a precious moment.

I can't say I handled this expertly and maybe some of my answer didn't compute with her but I am happy with the results. She showed care and compassion to her brother. They don't always get along, most siblings have their days where they just don't get along and parents become referees. With E's temperament, it happens more often then not.  Which is why I think my daughter posed her question, out of exasperation. That said, they have really good days too. Where they tackle one another in hugs and cuddles. Those moments much like how this discussion with my daughter ended are awesome.

We are blessed for sure.

With Love and dedication, anything is possible!

Master juggler at the circus of life

All parents are the wearers of many hats. As a parent with a special needs child,  you become the master juggler at the circus of life.

Currently, I am desperate for my youngest to get into Occupational Therapy (OT) and Autism Behavior Analysis (ABA) which has helped him a great deal in the past. It also provided me some tools to work with him on my own as I was able to see the therapists at work. Since his OT resigned in July, we have not been able to find him a new therapist. Double whammy, his ABA line and coordinator both left around the same time his OT did. He receives some therapy at school but it is not enough and I do not partake in that. The state where we live has a tremendous shortage of OT's and the demand for them is so high that he is on a waiting list 3 to 4 months out. There are plenty ABA providers but there's also a waiting list and difficult to find one with a clinic. The place I'm dealing with seems to have lots to staffing issues.

Frustration levels can often hit a serious high when you are making all the calls, doing all the research and trying to find someone that has a slot that fits his/their schedules. With two other kids schedules to consider, it can get overwhelmingly frustrating to schedule things. It doesn't help that because E is still so young he is still easily distracted and needs to be in a place that is separate from others.  Distractions of "fun" equipment need to be minimized. By fun, I mean all the swings, beams, slides, etc that the OT gyms tend to have.

Currently, I'm in a battle with local ABA provider that has a clinic. Their lack of concern for my son is well, concerning. It's been since July that he has not received services despite the fact that I made sure all the paperwork was in place. Now I really shouldn't call it a battle since no one actually responds to me. The only effort is from my end. The Early Autism Project has failed my son for the past 5 1/2 months. Allowing him to slip through the cracks and not get the services he requires. I've done just about everything except send smoke signals to them demanding that he receive services. Not until you threaten to call the state and file major complaint, people start to respond. That's my least favorite hat to wear because I understand that with complaints comes the risk of people losing their jobs. I don't want to be that person but it's my son, so I do what I can for him. Then, when they come with all the services you need, you're not sure you want to deal with them because they have not handled things professionally. But you know you have to cave because what other choice do you have, minimal. 

At the end of the day, we are not just parents. We are different kinds of therapists, a secretary, record keeper, Accounts receivable and payable, insurance coordinator, nutritionist, mediator, litigator, transporter, mind reader, translator,  master healer of boo boos amongst many more titles. The most important is warrior parent. Fight for the right of your child(ren), make sure they get all the services they need in the time in which they need them. It makes all the difference.

Would I change my life? I'm not going to lie, there are days where I just feel like checking out. When everything seems to be just a little bit too much at once and it feels like there's no relief insight. That if one more thing is piled on I just might drop all the balls I'm juggling. That to many sleepless nights have added up and you're just exhausted. Then my son will come up to me and say "Mama, Huggies" with his perfect brown eyes.  I remember how last year he couldn't even say mama and how he would refuse my hugs. This makes it all worth it. So I go on. 

My son has autism. There's no changing that. He isn't broken, he is just different.  I am stronger each and every day for having him in my life. We count our blessings. 

With Love and dedication, anything is possible!