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!

Cursive No More

This year my eldest son will be learning cursive or script handwriting. His little sister has already learned how to write her name and is super excited about it. The fact that she has her brother beat is even more of an ego boost for her.

In any case, N will learn that this year. We were talking about it and he tells me N - "Mama, Why do I need to learn that?"
my response was that "It's mandatory. One day you will need it to sign contracts or checks." then we get into a back and forth.

N: Well why can't I just write my name or do it on the computer? It's hard for me.
Me: Because it's what the school needs you to learn and what if someone needs the actual signature, you can't do that on the computer. (He grimaces at me)
N: Yes, Mama the computer can do the cursive for you. (As if I didn't know this)
Me: Well, that's like cheating.
N: Oh, are you sure that's cheating?
Me: That what the school needs you to learn.
N: Seems like cursive is a waist of time. Everyone uses computers now.

At this point, I was running out of responses so I ended it with the famous mom answer "Because that's just the way it is" and he gave me a look and moved on. He knew that this was the comment I make when I have had enough of his questions. I can't disagree with him, even your bills can be paid online, making checks a thing of the past and me a relic for still writing them.

This is just one of the many banters we have on a daily basis. N’s an inquisitive kid, he questions  everything and we are both smarter because of it.

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!

News Story - Airlines grounds crew

I wanted to share this news story about a family who was traveling and denied travel arrangements because of what seemed like discrimination or just pure ignorance on the part of the airline crew members. Something as easy as switching a seat for a special needs person could not be accommodated for whatever reason is disheartening. It still amazes me how people are still so ignorant and how call ace they can be. 

Read the story and see what you think. I for one, was taken back. 

https://apple.news/AKynpk2p4T8yDrQr_b50Cwg

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!

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!

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!

Mom needs a vacation

I know I am not alone when I tell you all that I am ready for the kids to go back to school. I have been doing more running around over the summer then the school year. Juggling from taking care of my kids to caring for my parents. I’m spent and ready for my vacation to start...the school year.

Fond memories of Mr. Softee

My kids seem to think that they deserve all these fun camps. My son told me in his whinniest voice, “I worked hard all school year and this is my reward.” I shared with him that when I was a kid, my reward for doing well in school was chasing after a Mr. Softee truck in 100 degree weather, buying a oh so cooling Ice Cream cone or a frozen rocket pop and enjoying it as it melted in my hand. I never attended one single camp as a kid and I turned out just fine. However, where we live, kids don’t play much outside over the summer, they all seem to go to camp. So despite my not wanting to join in with “the Jones’” I send my kids to camp.

Now exhausted and drained from all the running around, the playing kitchen, ghost mom and explaining things over and over again, I am reminded of a commercial from when I was a kid. This may show my age but do any of you remember this commercial... “Calgon, Take Me Away” It was a popular commercial in the late 70’s, early 80’s.

I can relate to the first ten seconds of this video as many parents can. Often I feel like I am in charge of everything and feel increasingly overwhelmed especially because my kids require a great deal of juggling during the school year. The summer is like a three ring circus. 

As a kid, I laughed at this silly commercial. I couldn’t relate at all and thought it was ridiculous that she thought a bath could fix her problems. That thought still holds true. However, these day, I do relate to the sense of feeling overwhelmed and frustrated and how a calming bath could potentially help ease some of the stress. Watching it now, I still laugh because I’m like what was she complaining about?  She gets to take a long bath in that giant tub. I don’t even have time to fill my small tub before some little person comes knocking on the door or jumps in for themselves. 

As I write this, my youngest son is asking me to repair his toy hedgehog “He needs surgery!” And my daughter, is requesting that I change her splint for her broken finger. Yeah did I mention that she broke her finger over the summer on the exact same day she broke her collarbone last year. Yea! So “Calgon, take me away” but like really away, far away....please!!!

Clearly, I joke about it all because thats the only way to survive it most days. Laughing at myself is my coping skill. How do you manage when your kids are driving you a bit bonkers or to the end of your rope?  

Hope you all are fairing well this summer and looking forward to a pleasant start to a new school year, I know I am. 

We are blessed for sure.

With love and dedication anything is possible!

Is Sensory creating the behaviors?

On my last post I shared that my son E had a rough day. Everything was off about him and it seemed like everything was sending him on a tail spin. I mentioned that his OT had the look of being “Done” with him and I was right. This week was his last week with her. Allow me to share with you what happened.

E went to OT this Tuesday after last week kicking the OT in the mouth. I was prepared for her to tell me she was done with him. Thankfully she gave him another opportunity but not after speaking to me and letting me know her thoughts. The OT believes that E is not in control of himself. That his hyperactivity and a few extra undiagnosed labels, tossed in for good measure, OCD, ODD were getting in the way of his completing tasks. I know he has hyperactivity. That his mind and body are constantly moving but I just felt there was something more. Yes, his “Want” is a factor but was she looking at WHY it was playing such a role in his life. 

My thinking is that E is overstimulated in the OT environment. That he is in this small room with people coming in and out, the phone ringing, bins of toys that he can see what is inside, the parents outside in the waiting area with other children making noise, the door opening and closing, smells of an old house, etc. I share my thoughts with her and she gives him one last try. When his session was over she calls me in.

The OT begins to tell me that she sees E get frustrated and that she too gets frustrated because she can’t help him. He doesn’t do the work because he is hyper focused on other things. That he is constantly moving and that when she tried to force him to do work, he bit her leg. She told me she would no longer work with him until he is regulated on medication. UGH! Told you she was done. 

In any case, she proceeds to tell me why she can’t help him and that she is sorry but for the safety of herself and other kids she would have to pause care until he is medicated. Then tells me I should call the doctor and tell them it’s urgent despite my having an appointment already scheduled for mid August. I sign the second incident report and head home. 

He’s upset because I told him that he was not allowed to return anymore because he hurt her again. E kept saying “I will make it right, Mama” but I knew despite his wanting to, that he couldn’t. She was right about one thing, he was out of control but I don’t think it was just hyperactivity or any of those other things she added. Part of the reason we went to her was to address his sensory needs but she never focused on that. She wanted him to sit and do work. 

I’ve been reading this book called “Beyond Behavior” by Dr. Mona Delahooke and so much of the book sounds as though it was written about E. My son has his days and often I know that either his siblings or the world is setting him up for the kind of day he will have. Alone in his safe space, he is your typical kid. Shows no “behaviors” is kind, gentle and funny.  What if like the books says, the behaviors are just a symptom of what he is feeling. For example, E was having a great day until things started to change in his world. Add one sibling and he tends to be a bit louder but still good. Add say the TV and he becomes a bit jumpy. Then add the other sibling, specifically the brother with Autism and the clashing begins. Add my talking on the phone and the demands or climbing kick in. All those additions to his day lead to an off day because the world he is most comfortable in is ever changing.

What if every reaction E has, is a way of him comping with what goes on around him. I know that when I am uncomfortable, I often make inappropriate or corny jokes to hide how I feel. But it only makes it more awkward sometimes. What if his aggressive behaviors are simply a response to how he  is feeling? I’m still reading but it goes along with what I have been saying for the past two years, that it seems like something more is setting him off and that it is almost like a response to something. 

We have an appointment coming up with his Behavior Pediatrician soon and I will address this with her when we meet. I am excited about this because I feel like now that I know this is a possible answer,  that maybe I can help him and the world can see him one day the way I do.  

I’m going to keep reading and educating myself for the sake of my children. I am not looking to change them but to help them. I will keep working with them to find what works. I highly recommend the book for any parent who has an autistic child with Maladaptive behaviors and feels like their is something more to just unpreferred behaviors.  It’s just a tool to help raise discussions with doctors and therapists. The search for answers continues...

We are blessed for sure.

With love and dedication anything is possible!

Endless battles

Today has been a rough day. The entire summer has been difficult. I’m tired and we are only a few weeks into the summer. I’m just trying to keep the kids busy. Show them a fun summer but E, well, he can be a lot. He requires me present every second of the day not because he actually wants me present but because I can’t trust to leave him for long. He’s high energy and impulsive which is a recipe for trouble.

It started this am with E wanting to watch TV. We didn’t want him to start morning off that way, especially not with the show he was looking to watch. Now the show itself isn’t bad, it’s just that it does something to him. He responds negatively to it. It hypes him up even more than normal and he starts jumping and climbing things. Sometimes I leave him watching tv for a minute or two when I have to go to the bathroom and I find him spinning out of control while laughing. It looks like a happy insane person. I immediately turn tv off and that turns into another outburst. That was this am.

Then we had to battle it out just to get E out the door to go to school for Extended School Year work. You’d think that asking him to put his shoes on is comparable to me putting him in a pit of snakes. He just didn’t want to do it and acted as such.

Finally, we made it to the school and E proceeded to run from teacher into the playground and do what he wanted not what was needed of him. Generally, I like to pick my battles with him and address but I tagged the teacher in. When he wasn’t listening to her, I had to do the count down from 5 and issue the threat of consequence. Today the consequence would be that he would not be able to do camping in the yard. He ran back into the classroom. He was now with his teacher and I would get sort of a breather for about an hour. At least it should feel this way, I spent the time running an errand with the other two kids and worrying about whether or not E was spinning out of control. The teacher later shares with me that he was “High energy” but managed to get all his work done today. A huge relief for me but I knew that this “High energy” was coming home with me and the day was only half-way done. As we try to walk him to the car, E decides he wants to have a picnic, tosses his snack over into the fenced playground area, climbs the fence to retrieve it, opens it and laughs. I mean, he found a way to get back into the playground and get what he wanted. Dumb he is not. Did I yell? Nope just told him he was loosing his camping adventure for that choice. He came running to car.

We get home and I have to prep the house for speech. Thankfully, the speech therapist canceled, vacation, so that was a huge break. For a moment I actually thought about how nice it would be to go on a vacation. Then my day dreaming about a vacation was taken over by anxious thoughts of my child misbehaving or making poor, impulsive decisions that would lead him to flying off a balcony or into the ocean. So there’s goes that....but I will leave my thoughts on my anxiety for another day because the days running around isn’t done yet.

Last part of this day is Occupational Therapy for E. I already was dealing with his “High energy” and also dealing with some really bad choice making. Punching his brother, biting his shirts and food refusal. Now we were off to OT and I was hoping all would go well. He seemed quiet in the car and went in without any issues. The room he was in was silent. Things seemed to be going well for him and the therapist. It’s 4 o’clock, it’s over. He did well. Then I walk in the room, therapist asks him to put the item away and show me what he completed today. E proceeds to scream and kick that he wasn’t finished. While holding him back, she tells me what she is trying to get him to do. He catches her off guard and 1,2, PUNCH! She quickly and quietly walked past me holding her mouth and the look in her eyes said “I’m done!” She didn’t return and though I was worried about her, I knew we needed to leave. I’ll wait and see what the OT says. Wouldn’t be the first OT to let him go. I needed to get him calm, so I did I spoke to him with a firm and direct voice. He said “I’m sorry, I will make it right Mama.” The calm lasted about 2 minutes. He was in the hall and mad again because he WANTED to play. I drag him out, sit him down, and wait for him to be calm again.  We walk to the car and he is enraged again. I wait...I buckle him up and go.

Now E’s trying to get out of his seat-belt and I am reminded that I need a better car seat for him, a better car to go with it. I feel that pain I get in my throat just before I am about to burst out into tears. I know I am not the only parent going through something similar. The only bonus is that he hasn’t bitten anyone today. He gets unbuckled and then I have to stop car and address it.

Make a quick stop at my parents to pick something up. Now E wants to get out. But I just want to run in. While I do that, he is punching his siblings. I don’t fight, I wait him out. He knows what he is doing is wrong. I know he does. The thing is, he’s improved. He was much worse a few months back. I’m just not sure what else I can possibly do to help him with these endless battles. My only hope is that he now shows remorse. That’s progress.

Then we get home. I’m watching him right now playing with his sister and brother. E is doing such a great job and so full of joy. He’s happy despite it all. Oblivious to all that he puts us through. I love him and I just want to help him reach his potential while meeting the expectations of the world. Problem is, I don’t think the world is ready for him because of their expectations.  I have faith and confidence in him that he will get there. It is just going to take him a little more time.

And that was just this Wednesday.

We are blessed for sure.

With love and dedication anything is possible!

Enter the World of Meds

Not to long ago, we succumb to the idea that our son may need a little more help when it came to self control and impulsivity. We had done so much with Behavioral Therapy in hopes that it would help curve some of his maladaptive behaviors but then Early Autism Project just dropped him. The same therapy that is meant to work with and improve those behaviors, used his behavior as their excuse. It was repulsive really but while we were in search of a new ABA provider, we knew something needed to be done to keep him and others safe. Enter the world of Meds.

We met with his Behavior Pediatrician and discussed our  medication options. You may recall me discussing this in one of my other posts. I had genuine concerns about how the medication/s would affect him. My worry is that he could get worse, that the medications could mess around with his young developing mind or that it could be lethal. All reasonable thoughts and concerns. These medications are all stimulants and he is only five years old my feelings were legitimate.

The key for us is that he has a wonderful Behavioral Pediatrician who heard my concerns and understood E’s situation. She knew he was a very bright boy with a vivid imagination who often had sensory and major impulsivity issues that presented poor choice making and sometimes extreme aggression. I wanted to help my son before he hurt himself or someone else. He is super strong and I knew it was only a matter of time. So we agreed to try a drug that was a Non-stimulant first, Guinifance (Tenex). There were some risks involved as it had never been tested on a boy his age but they outweighed the other stimulant side effects so we started him on it right away. To start the dose would be very small, that would increase slowly but not exceed 5mls a day.

We slowly worked him up to 3.5 mls in the am which lasted 12 hours and a second dose of 2 mls once at home. He was showing signs that the medications were working. He was listening to instruction better and was taking naps right after school. However, problems started to present themselves in different ways. He now was falling asleep in class despite having a good nights rest and his blood pressure was a bit low at times. After meeting with doctor again, she decided it would be best to lower his meds. We then went from 3.5 mls in am and then no medication upon arrival home. Then a few weeks went by and he was still showing the same issues but then things managed to get way worse. The school nurse called me stating that he was cold outside but it was 90 degrees out. When they brought him in, he fell asleep and when she took his BP it was dangerously low. The school RN hydrated him, called the doctor and sent him home. The doctor immediately called me and told us to stop the medication all together. At this point, I had already decided this as well. I rather be dealing with the impulsivity and hyperactivity then risking his health or worse his life.

Now he is taking nothing prescribed but is doing a few things differently suggested by the Behavioral Pediatrician. He drinks a small bit of coffee with milk as it has a reverse affect on his hyperactivity. I am sure plenty of parents would be against this idea but I was fine with it. Culturally,  I grew up with a grandmother that gave us coffee and milk as small children so I see no harm in it.  The only issue is that I can’t give him that at school. So I will cross that bridge when we come to it.

We also tried Chamomile drops but it gave him a severe rash. Strangely, he doesn’t have the same reaction when he drinks the brewed tea. He took Genius Drops for focus and attention but that ironically made him more hyper. I have also started giving him vitamins with Omega’s to boost his neurological development. Normally, he refuses all vitamins especially the gummy type ones but he takes this liquid just fine. It is strawberry banana flavored and he and his siblings love it too. The entire family loves Barlean’s Omega-3, and it is highly recommended by our family. For everything else, the search goes on.


We are blessed for sure.

With love and dedication anything is possible!

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!