Happy Thanksgiving 2020

Thanksgiving was a bit weird this year. Clearly Covid-19 put a kink in our usual holiday plans but we made the best of it. Adding to the holiday dilemmas, Dads birthday was on Thanksgiving this year and because of the virus we had to find other ways to celebrate safely. We all stayed home. 

After having dinners apart from extended family for the first time in years, we met up, masks on, went and wished Papa a happy 80th birthday. We hung out in and out of the garage, lawn chairs about, kids running everywhere and eventually sang him "Happy Birthday." Maybe we didn't adhere to all the CDC recommendations but we tried our best.

It was something we all needed to do today. To remind ourselves why we all had something or someone to be thankful for. Even though things didn't go perfectly,  it was as good as I usually expect things to go. My kids go nuts when they see their cousins, people get anxious and E gets fixated on something, today it was cupcakes, which ended with him getting scolded for poor choices. And this only happened within the first 20 minutes of our being there.

Despite the chaos, I was glad that we could have that family moment. My kids needed it and I think others did too. I know my dad was happy to be surrounded by us all, even if it was at a distance and masked. To me, these masks are now ant act of kindness and love. 

If you did get out with family and friends, I hope that you were able to do it safely. With all that was lost this year, it is my hope that we all did our best to keep things in perspective and realize how fortunate we are to be alive, especially now.

Be grateful, while also being considerate of those around you. We don't live in a bubble, though these days I try my best to. Do your part in helping the nation get through this pandemic. Feel good about yourself through caring for others. 

We are blessed for sure!

With love and dedication anything is possible!

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!

Virtual School Check-in

This is just a check-in since I have been doing a poor job of sharing my experiences lately. Not for nothing but it has been an adjustment that requires a great deal of my attention. The kids are doing well and trying hard to adjust to all the change of the last few months. With virtual school in its 5th week here, we are slowly finding our rhythm. 

We started off strong, excited about the opportunity to do school at home and I was super great at my new job. They were dressed for success. Happily taking pictures in their new Covid-19 virtual Classroom. Then things changed. They logged in.

                  

     

First, I had to completely separate them. They are all at different levels and schedules. Each other’s class was interfering with the others. They would get distracted easily and run over to each other’s computers to see what they were listening to or just try to be funny on camera. I have children that think they are clowns sometimes. 

 

We have had a few moments when the kids fell out. When I say fell out I mean tears.  My daughter who is only now just getting into virtual wasn’t really enjoying virtual like she should at the start. She would be on the floor under the kitchen table, crying or slumped over the table agonizing over her classwork. When the school was doing assessments, she would just scream “I’m so dumb!” It infuriated the both of us. She got through it but not without a huge pep talk from me. Then they decided it would be a great idea to continue the idea that awards for being robots were good and she had another meltdown. That required another pep talk but this time from her aunt (Titi) who made everything better.  Starring at an iPad has never been so boring for a child. N is doing his best so far. He has really showed me that Homeschooling really is for him. He has way less anxiety and remains more focused with less distractions because he is allowed so many breaks.  My only concern would be the lack of social emotional experiences being permitted throughout ZOOM classes.

If it’s challenging for my daughter who is “Nuero Typical” then it is much harder for EE and frankly for me too. Keeping track of three different time schedules at home for the kids has its problems. Jumping from one kid to another can be exhausting as well. Then add in the at home therapy supports and I’m spent. Getting EE to sit and maintain focus sometimes feels like I am the Wring Master in the Circus. “Come  one, come ALL!” Constantly calling a child back to the table to work independently or online. He HATES writing. Always the onion, this has raised some more questions to why he hates it so. Is it just not preferred or is there an underlying issue. It is his hand strength or is it neurological. So that’s in the works. 😩 

The zoom classes can overstimulate him and leave me wrangling him back to his chair like a lion tamer. Issuing demands and threats of “X’s” on his Response Cost System card. Which has been working. Well enough to add some rewards but not enough to have a entire day without having lost anything. The related arts classes have been the worst especially PE, leaving me with a wired child. Having had his first IEP now, we have opted out of live participation’s, allotted for more breaks with some sensory input, and widened the time frame things are do. I am way more concerned about the academics at this point and  though I know he enjoyed it in related arts person, it’s just not the same the way they are doing it virtually. So I am not upset about opting out of related arts for him. Reading, writing and Math are key goals for us.  

From here we will see how things progress. Two and half months in and we are starting to find our groove. I just hope that we all manage to find away to do this and truly gain versus regress in our learning. If you are a parent that has chosen virtual for your child(ren) I hope that you are doing well and managing. Remember this is all a new challenge for so many. Communicate often with your child’s teacher/(s) and seek help if and when you need it. Teachers want to help and they also need to know that they are supported. Create an alliance and work together. Have confidence that the best you can do, is good enough and that they will pick up where you can not. After all, most of us are not teachers but we are parents doing the best we can to protect and support our children during these unprecedented times. So talk to the teachers, it’s been a great help for us to know that we are supported in that way. 

Please feel free to share with me how you are managing during this pandemic and virtual homeschooling. I would love to hear from you. I pray you all are staying safe and making the best of this time together. Be kind and love one one another. 😷 

We are blessed for sure!

With love and dedication anything is possible!

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!

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!

Goodbye 2019

Goodbye 2019

You never go into a new year expecting that things will go poorly, it’s about hopes and dreams, wishes and plans for the future. 2019 was a year that presented many challenges and some personal hits to our family.

If you follow my blog you know that my youngest son had a lot happen to him this past year and has been struggling to get back on track. We have been dealing with a great deal of outburst and unexplained emotional meltdowns. It’s been hard because I constantly have to figure out how to approach the behaviors. Is it trauma or just being difficult? How do I approach and deal with him? I’ve chosen to continue the positive parenting approach with “Love and Logic” talking it through while trying to remain quiet, tolerant and calm. He slowly is showing signs of recovery but it’s a journey for us all and it will take time.

Me and Pa New Years Eve 12/2019

 What I haven’t shared with you is that my father was diagnosed with Stage IV Esophageal Cancer at 78 years of age. In the summer, he was told if he chose not to receive treatment, he would likely be dead in four months. 4 months! He asked the doctor “Could you give me one more Christmas with the kids?” The doctor simply said “We can try.”  So dad braved the 12 treatments and we celebrated his last of the first round on his 79th birthday in November. Then Christmas, with most of the immediate family present. We brought in a New Year with him and I know he felt blessed to still be here to do that. We are certainly not trying to take this time for granted, even though sometimes it is easier to forget and pretend like things are okay. I realize our time is limited. It always is really, each day we get a bit closer to our end. However, I’m choosing not to squander our days with the family. I always say “I love you” because I never want him to think even for a second that I never did or that I lapsed in my care for him. He has been my rock and now all I can do is try to be his.

When asked what was I most grateful for in 2019, I joke that it is over but that isn’t the truth. I never would have dreamt any of this for us but life has a way of steering its own path for us sometimes. The news received was like a one two punch to the gut, each time it felt like my heart was being  squeezed out of me. Yet, there have been lessons to take away from this pain. My son has taught me so much, even in the worst of what he is going through. Love is the reason for everything. It can hurt when you love so intensely but it can also give you the comfort and the strength you need to fight for what matters. I do it for my son and my father is doing it for us. I fight for my sons well being. My dad is fighting for his, so that we can have one more day, one more joke,  one more hug, one more I love you with him. We undoubtedly will take them anyway we can get them.

So yes, it was a hard year, and maybe 2020 will still present its challenges, my son still has healing to do, as do I. My father still has a fight ahead of him but he’s doing it with a smile, most days and a purpose. I see strength from both this young boy and this old man. They teach me resilience, the power of prayer and endless love.

What do I wish for in 2020? That love continue to guide us and heal us all. That family be the center and focus in our lives. That love fill our hearts and spread to those around us. To be grateful and to  not allow fear to stop us from achieving our goals in reaching for the stars.

Happy New Year friends. May the love in your hearts spread out to the world and make it better than the day before.

Feel free to share with me what you are grateful for this past year and what your hopes for the coming year are. I would love to hear it.

We are blessed for sure!

With love and dedication anything is possible!