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!

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!

Grateful for Angels

Recently, I had to rush E to hospital for ingesting something he shouldn't have. He was literally out of my line of sight for less than a minute. When he got quiet, I knew I needed to go look for him. There he was eating my moms medicine.

It always surprises me how he will eat styrephone or something like that but he won't eat a bite of rice or chicken. He is so extremely picky but not when he really needs to be. Poison control says get to nearest hospital so I went, no hesitation.

My only mistake is having taken them literally, I went to the nearest even though another ten minute drive would leave me at children's hospital. Instead, I stopped at our local hospital. Which is a great hospital, the twins were born there, just not for pediatric emergencies. In any case, I took him and it was nuts.

They brought him in quickly which I was thankful because he was already starting to act up. Then once in, they wrapped him up in a papoose and immediately IV'd him and took blood.  Getting his IV in was rough. It took 5 nurses and myself to hold down this little three year old boy. He is strong but he was now stressed so he was even stronger.  He screamed so hard and so loud that he actually burst a vein on his forehead. I too was scared for him now.

The intake nurse came in and told me a story of her "typical" daughter eating her cats medication for seizures. She told me E would be fine, if her daughter survived that, he would too. This woman who didn't know me from Adam tells me just what I needed to hear. Basically, I'm not a crap mom and all kids will do something at one point or another that leads them right to E's outcome, sitting in a hospital scared. (Angel #1)

E's health was obviously important to me but I was also consumed with worry of the fact that he was terrified. He kept saying to me "Mama, I scared." At one point he collapsed on the gurney, laying perfectly still and said "I dead." I blame is sister E for that, she says the craziest stuff when they pretend play and that is one of them. E still has speech but is limited, we had a hard time determining what and how much he ate. I left my mom at home trying to determine what was ingested but blood work determined that they would simply keep him for observation. The nurses warned me that his behavior would become more agitated and aggressive as meds work their way through his system. At one point, he looked like a fish out of water, flopping and jolting about. Fortunately, "Not the Mama" was there to help me with him and kept rocking him back to sleep when I couldn't. (Angel #2)

A friend of mine here rushed to be with us at hospital but when she realized she couldn't help me there, she went to my home and helped my parents with my kids getting them each off to bed. Staying with my mom until she knew E would be okay and that my kids and my mom were asleep and calm. (Angel #3)

Around two in the morning, the doctor gave us the all clear to go home. E lay asleep when the nurse came in to take his IV off. He was tired, cranky and scared so we were relieved when he had finally fallen asleep. And was seemingly asleep for remainder of the night. We didn't want to wake him only to torture him all over again. The nurse was so calm and easy going about it. As she sat on floor slowly unwrapping his IV bandage to remove IV, she talked to us. She shared with us that she will be careful as possible because she didn't want to agitate him any further. She mentioned she was on the Autism Board and that she understood E's situation very well. Making it a point to let me know that these things happen sometimes, especially with little ones like E. She took care with him and was successful in not waking him. She once again reassured us that he would be okay. Told us what to expect and do in the next 2 days and sent us home. (Angel #4)

Over all, I am grateful to the entire staff that helped us get through this. Glad that E was surrounded by caring people at Lex Hospital. In addition, I am extremely grateful for the angels that walk this earth with us. All of these women helped us tremendously by being non-judgemental and super supportive. I have to believe that God puts people in your path for one reason or another. In this case, he sent me the mom that had been through this, the calming spirit in my life and soother to my boy, my sister, a friend to provide caring support and the head nurse that was educated on Autism more than most.


Helpful information if you ever find yourself in this situation:

American Association of Poison Control

1-800-222-1222 Emergency call line

With Love and dedication, anything is possible!