Seven, I can’t believe it!

Lucky Seventh Birthday-🎂🎂👧👦

I want to say that yesterday was an easy day and all went perfect. That there was no fighting, arguing or refereeing. I’d like to tell you that but I can’t. What I can tell you is that my kids had a great day. It was their birthday. They are officially 7 years old. Seven. I can’t believe it.

We have come so far in the last seven years. When they were born, I recall how worried I was for them in the NICU, praying on when I could take them home. Now, I look at them and though I still worry about them, they have come so far, strong and confident kids. 

Together they have taken leaps and bounds, plus a few falls along the way too.  I see how they encourage one another and how they use their “Spidie twin” senses and come to one another for comfort, support or to just check in. To show growth, this was the first time my son didn’t bite into the cake this year before us serving him a slice.

My husband and I are grateful for family and friends that reached out with special messages of love and celebration. Additional thanks to those of you that sent gifts even when we said you didn’t have to. (When I say “we” I mean me because they would never say that.) It made the day all the more special for them. Plus, they made out like bandits this year. COVID-19 birthday guilt I guess. 

No party, no problem. We zoomed family and friends in for cake time. For the kids, it felt like we were all really present. Yes, the singing was out of tune and delayed (Oh wait, that’s typical for us)  but the true meaning of it all was there...a celebration of life. Two lives in this case.

My wish would have been that my parents could have been with us in person. Not going to get many more birthdays with my dad. I hate to say it, to even think it, but it is true. To them, it was like having them in the room, so I guess that counts for something.

You can see the far stare that my son has. He has had some challenging times that he is working through. We all are doing our best to help and love him through it. He may not be smiling as often these days, but I promise, we are doing are absolute best to get to the other side of ALL of this to see him smile regularly again. For now, his sister has his back. Literally. 

Thank you all for you best wishes. It was just what they needed to boost their spirits during this difficult time at home. Please leave me a comment and let me know how you are sharing time with your family. We would love to hear from you. 

I pray you all are staying safe and making the best of this time together.

We are blessed for sure!

With love and dedication anything is possible!

Acceptance

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

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

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

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

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

https://youtu.be/xu0UmLzClus

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

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

We are blessed for sure!

With love and dedication anything is possible!

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!

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!

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!