Where Do I Begin

A sunset by my daughter.

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

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

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

What missing. 

Socialization:

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

Structure:

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

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

Support:

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

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

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

Gardening teaches life cycle of plants

Online education built around games (Thanks to teachers!)

Observing things in nature and then learning about them.

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

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

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

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

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

We are blessed for sure!

With love and dedication anything is possible!

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!

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!