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Showing posts with label Autism Families. Show all posts
Showing posts with label Autism Families. Show all posts

Tuesday, November 3, 2020

This Says it All!

I mean this says it all. My eldest shared his thoughts with me, handing over his journal for me to read with a smile. I was expecting something funny. He is comical in his writing despite the topic.

N is a huge hugger, always has been. For the longest time we did everything possible to keep him from hugging strangers or attacking people he knew and loved with hanging hugs (That's when a child jumps at you for a hug but doesn't quite get caught and slides down as he breaks your back.) with COVID-19 being what it is and all the restrictions of personal contact, which he is to my surprise following, he clearly misses "HUGS".

So if your lucky and you get the chance to hug someone you've been missing and feel the joy of their warm hugs, bask in it. I myself have never been one for long hugs but if given the chance, I might linger a bit all the while remembering there is a kid who really misses hugging EVERYONE.

Please continue to be safe and as my daughter says "Protect the old people." Let us be mindful of our choices and how it could potentially affect others. Praying the world can soon hug without so much worry. Virtual hugs 🤗 for all!

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

Saturday, February 1, 2020

Mr. Anxiety


Recently, my eldest son was complaining of throat pain. So we needed to take him to the doctors but that also meant we needed to prepare ourselves mentally and emotionally for what would be an anxiety inducing visit from Mr. Anxiety. 

N became fixated on the fact that he had to have a tongue depressor used on him. He hates the taste and the feeling of gagging. The entire trip to the doctors he kept asking “Do they have to use that stick in my mouth Mama?” Where I repeatedly responded “they will need to look at your throat if your throat hurts you.” Later adding “what do you think they are going to do if your throat hurts?” I was needing him to stop asking over and over again for my own sanity but I knew full well that this would not be the case.

When we arrived at the office it was clear he was stressing out. Hands curling into fists, sweaty hands constantly being wiped on his legs. Getting up and down from his seat while still asking me the same questions about the tongue depressor “Are they going to use the stick?”

When we entered towards the patient room, he started on the nurse. Asking the same questions and stating his dislike about the entire process while she just tried to get his height and weight. 

Once in the room, he fought the nurse and wouldn’t allow her to swab his throat. Moving his face away or swatting her hand. Impossible and clearly frustrated, the nurse left the room hoping the doctor would have better luck. I can understand how frustrating it is for someone who is trying to do their job but I wish others would try to be more empathetic to his state. 

While we waited for the doctor it just added to his anxiety. As he sat there, he came up with alternatives “Maybe I can just stay sick.” Or “I’m feeling much better, let’s just go home.” His legs shaking, tears in his eyes “I just can’t take this anymore!” Panic now in the room. I remind him to breathe and recall his “Peace Out” podcast that sometimes helps him calm down and work through his anxiety. I passed him my phone to try and get him to find his calm.

Enters the doctor and “Anxiety” completely takes over. He bursts into tears and panic. His arms go into protective mode, swatting the doctors hands away. Enters “Fight or Flight”. The doctor works slowly and patiently with him, then comes N’s dreaded moment, the cotton swab. The doctor says “I’m not going to use the tongue depressor. Just this swab.” N interrupted him “it’s still a stick! WAIT! I don’t want a stick!” Moving his hand away.

Then I gently take his hands and tell him to take a breathe. I urge him to listen to the doctor who is only trying to help him. The doctor tilts his head back and asked him to open his mouth. A small struggle and done. Tears running down his face, N is upset but when he realizes it’s over I see his shoulders relax, he gains control of his breathing and anxiety slowly leaves the room. He returns to his usual happy self. 

All that build up anxiety, as the thought grew bigger and bigger in his head spiraling him out of control. He would get calm only to work himself up again. For me, it seemed so simple to get the throat culture. For him, it was as if someone was going to wound him. The mere thought of the taste of the tongue depressor was enough to send him into a frenzy, snowballing out of control. 

People often look at my son always surprised to later hear of his diagnosis of Autism. I often hear “He doesn’t look Autistic.” This frustrates me. What are they expecting? Should he be rocking in a corner somewhere staring into the void or spouting out random gibberish? What they don’t realize is that Autism presents differently for each child. For N, a huge part of it is Anxiety. He can become fixated on ideas, thoughts on how things are meant to be, the way things function until his fears become paralyzing. In this case it was how the tongue depressor made him feel. I know comments like this aren’t really judgements but ignorance on their part. They don’t know him, his diagnosis is not a star upon his chest and we don’t willingly promote it to everyone we meet. 

It is important to find healthcare providers who understand the function of Autism and it’s many ever changing variations. NEVER assume that because they are pediatricians that they fully understand the scope of Autism or any other disability. It’s important to discuss these things prior with doctors. Though the nurse didn’t handle this the way I would have preferred, thankfully, we have a pediatrician who is patient and educated enough in the matter to not rush the process. So glad we did go to doctors because it turns out that N did have Strep throat and had I given in to Mr. Anxiety and forgone the check up, it could potentially have gotten worse. 

Since we can’t change the world to adjust to him, I can only teach him how to adjust to the world. There will be days like this where any advice I give him doesn’t help. Where his tools fail him. Where anxiety is the driving force. We will have to just keep up the repetition, practice the situations with the hope that each time will get easier for him. 

How do you handle a nervous child? I would love to hear your experiences and what worked for you. Until next time...


We are blessed for sure!

With love and dedication anything is possible!

Tuesday, August 27, 2019

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!

Sunday, August 11, 2019

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!

Friday, August 9, 2019

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!


Thursday, August 8, 2019

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!






Tuesday, August 6, 2019

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!




Wednesday, July 3, 2019

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!

Monday, July 1, 2019

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!

Thursday, May 30, 2019

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!

Thursday, February 28, 2019

Seeing the changes

Some of my readers know, I have been struggling with my youngest son, E and his school. We felt as though he was not receiving the proper education he deserved or that he was being treated improperly. Not abuse, but lack of skill, knowledge and passion still made it traumatic. Socially and academically he was not thriving in his school. He hated going. Being constantly shoved in a "Quiet Room" did NOT exactly help build a strong bond with the teacher and the room assistants, as well as the school administration.

We were constantly getting calls from the school about his behaviors but we assumed he was getting some work done. To the point that when the phone rang, my husband and I would immediately stress out. The teacher never communicated enough with us about how we can advance him academically or even with the specifics to what they were dealing with unless it was related to negative behaviors. I was always the one asking for homework or for insight on his day. Communications were only about his behavior through app messaging (requested by me) or mandatory paperwork. The avoidance got to be so much in the classroom that my son wasn't learning at all. However, I didn't know this until the 3rd quarter progress report came in. We just assumed he was getting some of the work done. Six months had past and he was losing all that he had gained.

Very quickly, I made an appointment to speak with the school principal to discuss my concerns and she seemed shocked that I was complaining about the teacher and that my child with said teacher was not thriving. Believe it or not, she then told me, I wasn't the only parent with this concern and she isn't exactly aware of what is going on in that classroom. She said she was "in the dark." THE PRINCIPAL. She said she would get back to me. Could you imagine? It felt as though she was blowing me off. I left that meeting with such frustration and anger about the lack of passion she showed that I put a call into the school district.

Finally, the staff in special services at the district office came through for us, removed him from the school and transferred him to another. We were so happy about this. I believe my son suffered some level of trauma while in their care, which built distrust with those from that school. They weren't going to get anything accomplished with him. The move gave us hope that with a new slate, E could finally begin to learn and to love learning. Only a few weeks in and we can already see some positive changes. The teacher communicates regularly with us. Shares not just the failures of the day but also his successes. E shares with us small details of his day in a positive light.

The other night E was using a small learn and play computer, he said he was doing "Homework". He was getting the answers right and asking for help when he was not sure. I was so proud of him. Then to my surprise, he asked for a desk so that he could do more homework. I mentioned to him that in order to do that, I would have to get rid of his Rocket tent and asked if he was really okay with that. E loves this tent. There are nights he prefers to sleep in the tent versus his own comfy bed. So when he said "yes" I cried because that was his way of letting me know, he is enjoying learning.

Don't get me wrong,I know the E still has a long way to go. We are still dealing with behaviors but he is working through them. He is capable. For him to be in the care of others who believe in his potential, who have the training and passion to help him achieve all that he is capable of, well that is just like bringing sight to a blind man. We can't wait to see what is to come.

We are blessed for sure.

With love and dedication anything is possible!


Tuesday, September 18, 2018

Wake up!!

WHACK!! Good Morning!?
Please God!! Can you please tell me why my 5 year old son thought that it would be a great idea to wake me up this morning with a remote to my head? My face to be specific.

He could of walked over,  gently touched me and said “Can I watch tv Mama?” He could of just stood there staring at me like his sister does. Creepy, I know but I always wake up a bit startled so it clearly works. So with those options, why on earth did he think it would be a good idea to wack me with the remote and then ask me to watch tv?!

It is this behavior that leaves his father and I wondering will he ever grow out of this impulsivity and poor behavior or will I have to sleep with one eye open the rest of my life?  It is startling how rough he can get with us, especially with me. We could be having fun and then suddenly something or someone will set him off and out of no where he punches or slams into you.

Just the day before I took him to the store and from the start he was being difficult. In an effort to control I wanted to place him in the cart. I get things done faster and he can’t run away. He screams so loud an old man corrected him. I remind him of the rules and tell him we could leave now if he behaves like that. So he’s good the rest of the time. Listens and stays put.

Then came check out time. He wanted to play with the belt at check out. Immediately I see he has created this story line with the belt and an item that we still have yet to ring up. He tells me the Keifer shake was his boat, the belt was the water and I couldn’t take it. I respond to him that he has to let it go so that the lady may do her job and mama can pay. This set him off. As I am handing the item  to the cashier, he punches me in the face. Bad boyfriend style, right on the cheek and as I felt the fire come to my face, then he pulled my hair. The cashier gasps, the lady behind me tusk, tusks me  and I just hold his hands off as I try to check out. Now he is screaming as loud as he can. It was embarrassing and frustrating. I felt so judged and even helpless  as a parent. I can’t control him, nor does he want to be controlled.

For the past two years, every day presents a challenges.  There are those days that feel like a remote to the head. It is physically exhausting, can be emotionally draining and often I’m the one walking away hurt. I withdraw when he gets like this. I don’t want to risk subjecting someone else to his outbursts.  I know not taking him to places is a bad thing but it out ways my other options... most days.

Loving him is never a question. I will always love him, fight for him and never give up on him. Some days it is hard to feel like a good mom and do right by him. He, like my other two kids has a piece of my heart. I don’t often cry but for my kids, I will.  I worry often about how they will get treated or how others treat them. Especially the boys because they’re so unique.

 So the day that I’m feeing like I’m writing a roller coaster or when that day turns into a week or month, I just breathe, and then I remember to breathe again. Someone will remind me I am a good mom. One of  my kids will say something like “oh mama, I’m sorry you’re having a rough day. We love you.”  Despite the melt downs, whining and fighting, I’m reminded that they are impresionable little beings depending on me to show them how to become good human beings. That this is a moment in time that can be a learning moment for all. That they are smart and capable of so much. That all of this is worth it if he learns just a little bit more then the day before. Each daily struggle gets him one step closer to the man I pray he will one day be.

So we breathe again, all of us to find our calm. We go silent for that moment and we begin anew .

We are blessed for sure.

With love and dedication, anything is possible!

Monday, June 4, 2018

End of school year is here

So as the panic sets in and I realize that the school year is coming to an end, I am scrambling to find things for the kids to do while also dealing with the emotional battle of watching my babies grow-up and having to let them do so. I just keep hearing Moana singing in my head,  🎶 Let it goooo...🎶 It's hard but I am trying to do my best to loosen the reigns this summer.

The twins have finished their 4K program and will be moving on next year to KINDERGARTEN. We had hoped that E would be in a typical classroom for kindergarten but he’s just not there yet behaviorally.  Thankfully, he will be following a typical kindergarten program but not participating in one full day.   He will spend part of his day in CC1 classroom and the remainder of his day will be in typical group settings.  It was hard to accept but I know that his teacher and the staff worked really hard with him these past two years.  I can see so much improvement in so much of what he does. He has especially come far with his speech and attention.

Sister E will be going to the same school as eldest brother N next year though she is torn. She loves that she is going to kindergarten and that she will be taking the bus with big brother. However, she feels sad that she won’t be with her “baby brother” E at the playground. She asked me if it was because of the autism (She is so smart) and I said yes. After, she responded with “I hate the autism!” I just didn’t know how to respond other than telling her we would be working extra hard with him so that we can get him back to their school. But if he doesn’t it was okay for them to have separate lives so long as they always made time for each other. She “seemed” okay with that.

Just a note: We have tried to explain to her that she was the last to be born but she still insists that he is the baby. So we just let her call him “Baby Brother” now.  In any case, she will be attending a half-day camp throughout the entire summer which makes us all happy. She can be a bit of a spirited child. 🤣

Truthfully, we will be pushing E this summer to get those ABC’s down, numbers, listening skills and increasing sitting time while reducing his impulsivity. Sadly, there are not nearly enough activities or camps specifically for Autistic children of his age in our area. His teacher teaches camp for two weeks over summer but that’s about all he will be getting. So we will be making the effort to get out more with him and peer play as well. 


Soon N will be completing his school year as well and we look forward to taking him to new places to explore the outdoors. We are seeking to encourage his love of adventure and creatures of all kinds. We promised him that he could pick the places, within reason of course. He wants to go to Africa but that isn’t happening this summer. He dreams big and we love it. I can’t believe he is going into second grade already. Time flies! He is super excited while still expressing some nervousness about what is to come. Lets face it, he's a worrier and it unfortunately is what he does. We just continue to help him through his many fears and worries. He has been doing great and we expect him to continue along this path in the years to come. He will spend the summer taking soccer, zoo camp and hanging out with friends.

We are so proud of our babies and how far they have come. They each are special in their own ways. Though each have their own unique challenges, I wouldn't change my life at all. Okay, maybe I would want a bit more sleep and a lot less laundry but since they are a package deal, I take it all. 

This is going to be a great summer for us all.

We are blessed for sure.

With love and dedication, anything is possible!

Tuesday, November 7, 2017

Autism Island

I absolutely understand where dad, Shane, is coming from when he spoke out on Facebook about his sons forced isolation.  Isn't this just another form of bullying? Maybe, maybe not. Every kid certainly has the right to invite who they want to their own party. But...

My now almost 7 year old son was invited to only one party last year and before that none, other then family functions. No invites for him this year either. Does he think about it? Not really, until he hears the kids talking about a party coming up or one he missed. Then it's an hour long conversation about how there is nothing wrong with him, some kids just don't realize how special he is or that not everyone is meant to get along.  I have seen kids be treated badly because they are  "different". We can't put the blame on children alone, I know that the parents have a lot to do with this. I have seen parents give me looks or directly make comments about my youngest son and MY parenting skills. One woman told me not to bring my son to play dates anymore with his sister. She just felt it was "too much to deal with" for her and that it would be "calmer if he wasn't there". Needless to say, I deleted her number from my phone but only after telling her a few choice words.

Instead of passing judgment, parents should take these opportunities to teach their kids about something outside their own personal box. Different isn't a bad thing. Trust me, I know it is impossible to live in a world where we all get along. Personally, I know I am may not get along with all my neighbors but I am not going to treat them badly because we may see things differently. I will continue to be courteous.  I certainly would never exclude a neighbors child from one of our parties simply because I don't like the parent(s).  I'm not asking that parents force their child to be best friends with mine or have them over all the time. I'm not conducting a social experiment with my kid. It's just a small moment in their lives to show acceptance and understanding amongst their peers rather then being out casted to Autism Island.

Both my boys have the sweetest hearts and our unbelievably loyal, they just happen to have Autism. People that make the choice to exclude them are missing out on a teachable moment for their kids. For themselves as well. Yes, they have difficulty sitting still, they talk too much, too loud, or do not speak at all. Yes, they may not acknowledge you when you address them right away or at all but there are ways to help them participate. Leave it up to us the parents to navigate them through that social experience. They just need to be given the opportunity. You the parents of the "Typical" kids could teach your child kindness, patience and understanding.


Shakespeare wrote "If we’re like you in everything else, we’ll resemble you in that respect." It is simply paraphrasing the Golden Rule but in the story, The Merchant of Venice,  it speaks of the negative aspect of treating others badly and its chain reaction. So I have found that connecting with other like minded parents works best for us. We may not all be best friends either, not all of them have kids with Autism but what they do have are kind and open hearts and their kids share those qualities with mine. Acceptance is a hard thing to find in this world but that falls on us.

In the end, isn't that what we want for all of our kids, to be kind and accepting of others, so that others may be kind and accepting of them, no matter how different they are?


We are blessed for sure.

With love and dedication, anything is possible!



To learn more about The Life of Reilly click the link.

Kudos to Reilly's mom, Christine and especially dad, Shane, for saying what so many of us often feel needs to be said. Keep up the great work in teaching us all.  And to Reilly, who unknowingly is teaching the world with out saying a word.




Monday, September 4, 2017

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!