1 Year (almost) Later….

Wow, I cannot believe it has been almost 1 year! We jumped into homeschooling out of desperation and haven’t looked back. It has been a huge journey/adventure! I was a classroom teacher for many years and started last Spring with on point of view- boy has that changed! Homeschooling is so different from classroom teaching. I have had to make a lot of adjustments to my style and approach. Mr. Man has surprised us all with his growth. When I learned to back off and take more of a Charlotte Mason/Unschooling approach with less pressure, he began to thrive! We also quickly realized that, for him, therapy days = school days and attempting both was NOT happening!

Benefits….

… Mr. Man was able to get 3x the therapy that he got in school. (I say was because we have now traded therapy for a private tutor 2x a week. This was the happy medium we all required to survive the overwhelming stress therapy brought into our lives. In the 45102785_10214439991767764_2496063601765253120_oend, the benefits of therapy did NOT outweigh the stress. Our tutor is amazing and is able to give him one-on-one attention, while giving Mama a break and the ability to give Monkey some much needed….uh, demanded…. attention.)

… We have amazing flexibility! (This alone….worth it!)

… Our house is 100% calmer. (Which is actually quite scary considering it is NOT calm!)

… We actually enjoy our time together. Now, we are the unit we were meant to be.

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Because There is No Instruction Manual…

Why…why do I seem so hesitant to write/post when I know how important it is? To myself and to that mom who might be at the beginning of her journey feeling alone and wondering if there is hope (I have been there). I know it’s important….so why do I find myself consistently failing at it? I’ve come up with a few reasons…..

1. I don’t have the answers! It is so hard to put into words what you are doing and what you are going through when you don’t even know if you are doing the right thing! What is the right thing? I am certain what is right for us isn’t necessarily going to be right for another family. It might be, but more likely it won’t. For that matter, I don’t even know what IS right for us.
2. How do I share our experiences honestly, openly, without overstepping the line to my son’s privacy?

So, among all the other things life has been throwing in front of me the past few months, these are the things I have been struggling with, the things that have kept me from hitting the publish button.

So here’s a little of what I have come up with. There is no manual….there may not even be a right or a wrong! What might be right for one season may change and be the wrong thing the next season….isn’t life great! The point is, my goal, to share our journey and help encourage others who find themselves on their own journey and hopefully something will give them hope, peace and strength to continue finding their way on their journey. Sometimes I can be completely transparent and sometimes I will need to omit details to respect Mr. Man’s privacy. Heaven help me be mindful of this and may my children forgive me when I fail.

Update on Mr. Man.
So, we’ve made a major change to our life this past week and we’ll see how that adventure turns out. Due to several personal family situations we decided to pull Mr. Man out of Kindergarten and finish the 4th quarter at home. Even though I realize the extra amount of work this is going to add to this Mama’s day, I have an amazing sense of calmness and peace now that the decision has been made. We will take some time to give Mr. Man his Spring Break, decompress, adjust to our new daily routine and start fresh in a couple of weeks. 29366491_10212717486826217_3734108845622951936_o

Mr. Man has made some amazing social progress at school and we are extremely happy with this. We loved the school and teachers. For these reasons, I tortured myself debating if we were making the right choice. In the end, logic and a long list of pros made the decision obvious. While I don’t think Mr. Man has a full understanding of what this means, he is thrilled at the idea that he doesn’t have to go back to school.

My first goal is to unlearn some bad habits and behaviors that have entered our lives this year, and find my happy boy. My second goal is to finish the year focusing in on a few specific, foundational academic areas that Mr. Man is still struggling with. Wish me luck!

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Perpetually Starting Again…

….I’m bound to get it right eventually, right!?!

Not sure why getting a routine down has been so extremely difficult. It’s been 5 months for goodness sake! I blame the fact that I now spend 2+ hours a day shuffling Mr. Man to and from school. Don’t even get me started on trying to get anything accomplished while Monkey is underfoot. In all reality I know those are just excuses, but I’ve learned a lot about Monkey since I’ve been spending so much more time with him. One thing I’ve learned is that he is completely lost without his brother. I’ve been trying to incorporate so many things into our schedule and create new habits that I have severely neglected my writing. Sadly, that was one of the upsides of switching my schedule around. Well, not anymore! I have scheduled an hour and half into my week specifically for writing and will be incorporating more over the next several weeks. While this time is divided between 3 different projects, I am still very excited.

Update on Mr. Man.

School has been…..well, school. I am slowly realizing that school isn’t his cup of tea. He has become Mr. Popular among his peers and seems to be adored by his teachers (he is a really sweet kid). But he still hates school. He’s talking, so that is progress.fullsizeoutput_1 However, he’s still really lost. We’ve completed his IEP, set up OT and Speech, but it just isn’t clicking. Don’t get me started on his writing (I’ve never wanted to hit my head against a wall so badly).  I think it has a lot to do with the planning that goes into making each letter along with the fine motor delay. We’ve begun the slow process of applying to get more OT services through DDD, because this Mama is at a loss here. He’s become obsessed with numbers and counts incessantly, much to Monkeys disliking. He’s really taken to drawing and retreats to that whenever he becomes overwhelmed. Overall, he’s been much more easy going and less fearful lately, but he was put on some stronger anxiety medication, I’d say its working.

Well, I’ll leave it at that for now. No major events or revelations. Just a short update to let our few followers know we’re still here, plugging along.

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A New Future

Mr. Man has started Kindergarten. This is something I have struggled with for a while. We had always planned to IMG_0225homeschool. However, we know firsthand things rarely go according to plan. We (my husband and I) agreed to try Kindergarten as a trial. See how Mr. Man does and what kind of services he can get. So far things have gone…. Okay. He’s not talking much, which isn’t a surprise. He screams much of the way there, but seems happy when I pick him up. Time will tell…

Other exciting changes, I have stepped out of my teaching position and am returning on a very part-time basis. A decision I also struggled with, a lot! There were several reasons that led me to this.

  • I can be more available for Mr. Man.
  • I can spend some much needed one-on-one time with Monkey.
  • I will have more time to pursue a few other goals that have been put aside the past few years.
  • I can attempt to regain some of my sanity.

I plan on writing more, not only about our journey with Mr. Man, but also some new adventures with Monkey that I am excited about.

How does this all look, I have no idea! I am a little scared out of my mind, to be entirely honest. But I am so excited to see what is in store.

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EEGs, ASD and ABCs?

June 2017

Funny how when you know something is coming, but can’t bring yourself to actually admit it. That is where I found myself, unable to actually post my last entry. So here’s the update…

We met with a pediatric neurologist, who agrees what I saw sounds like seizures. However, she feels like they are a different type and does not agree with the medication that was prescribed. We were told to stop the medicine and wait for EEG results. Not sure about stopping the medication, as we have noticed a dramatic change in his mood. He has become very fearful and is showing A LOT of anger. I have been working on preparing him for the EEG, trying to make it fun, not scary.

The psychiatrist took a look at our ASRS and made an official diagnosis of Autism Spectrum Disorder. I still have no emotional idea of where to land with this one. Sure, his delayed areas are obvious and he has some quirks, but there are so many ways in which he approaches tasks and the world that are so amazingly unique. Do I wish everything wasn’t so hard for him? Absolutely. Do I wish he didn’t live with so much fear? Of course! But without the things that are so uniquely him…he wouldn’t be my Mr. Man.

IMG_9805I knew it was coming but now what does it mean!? I don’t even know the proper PC terms…my child with autism, my autistic son?… Do I even care? Do we tell everyone (I guess I just did!) or do we keep it to ourselves? How do I help him through obstacles? How do I equip him to face the world?

Because one thing is for sure… he’s capable, we still have expectations for him and we know he will succeed. But how do we help him be successful in a world that approaches everything so differently from how he processes it?

 

 

July 2017

I always tell Mr. Man that he is the bravest person I know. He is! I struggle with my own anxiety, I know what it feels like to be fearful. I know how much every new situation sets him into panic. Yet, he amazes me all the time. He was extremely nervous about his EEG (and the level of exhaustion he had to be at preceding the test only makes it worse) but he was so brave! I was worried that he’d be too nervous in the unfamiliar surroundings that we wouldn’t be able to get him to sleep. Was I wrong! He hopped onto the table and feel asleep before he was even hooked up. I actually became concerned that he would wake up before the nurse was done prepping him. Afterwards, we told him he won at sleeping. He knew he had to go in and sleep, and that is exactly what he did.

Even in stressful or emotional situations, Mr. Man always seems to find a way to make his Mama laugh. Before the test, we stopped to use the bathroom. He would not let me flush the toilet because he was worried that the loud noise would wake up all the other sleeping children. How I love his heart! My Jekyll/Hyde boy…. stubborn, ornery, angry much of the time, but so thoughtful and kind-hearted, too.

***EEG results came back completely normal. While he may have actually had a few seizures at the beginning of the year, it showed nothing to make us believe there is any ongoing problem. The doctor is hopeful that they were just isolated incidents and that we will not see any more.

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Waiting, how I hate it.

***The next few posts have been written for some time. However, emotion and reality would not allow this Mama to push the post button. It has taken a lot of processing, but here they are.***

March 2017

Waiting has never been my forte. I hate waiting. I make a plan and I move forward. Lately, life has thrown a lot of ‘okay, but wait’s’ at me. I don’t like it.

Mr. Man had an appointment with the psychiatrist, and I basically unloaded on him. Mr. Man had been seeing him for a year and I’d seen relatively little change. Sure, he ebbed and flowed. But, other than tossing us medication, I didn’t feel we had been given any direction. No real way to help him. I was very up front with what was working ,what wasn’t, where we still struggled and my fears for Mr. Man moving into Kindergarten (another blogpost entirely!)

From this discussion came two thoughts…

  • Seizures
  • Revisiting Autism

First, Mr. Man has had two distinct instances when I believe he has had what is known as an absence seizure. Based on my description and Mr. Man’s teacher’s description of forgetting common daily routines and general confusion, we agreed to start an anti-seizure medication while we waited on a referral to a neurologist– two months! Second, Autism. We had been told that while he did have several red flags, he also showed too much interest in interacting with others. This by a doctor I was never fond of, when Mr. Man was barely two years old. As I said before, he has seen his psychologist for a year and has never said a single word to him….complete refusal. So, he agreed that we should take another look at this possibility. My husband and I took the ASRS and we wait…..two months!!

This is a lot to sit and wait on. 😦

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The Christmas Star

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It has come to my realization that my life has been too chaotic. I struggle with my time spread in so many different directions that I cannot accomplish any objective competently. I have spent the past month working on myself and my family, reprioritized and am ready to move forward. More on all that later, but this is the reason I am just getting around to writing about an event that took place two months ago.

December… family, holidays, making memories…the Christmas program. I know, I know, parents, grandparents, etc. love these. But, to a teacher, they equate to added stress on an already crazy time. Mr. Man might be the little performer at home, but put him in front of an audience and I never know what to expect. He was two when he did his first program and all I hoped for was that he wouldn’t bolt offstage. Crying I could handle, I expected it. Of course, I was humorously surprised when he spent the entire time on stage with his back to the audience. No tears, but he refused to look at or acknowledge the audience in any way. But hey… he did not run off stage.

Fast forward to Christmas 2016. Mr. Man is four. He’s talking, he’s working on social skills, but he still has a lot of anxiety with crowds. Monkey has entered the phase of ‘if I see mom, I cry’. So, playing the parent and teacher role simultaneously has gotten interesting. I was pleasantly surprised that this year had been far less stressful than the past, and the night of the show arrived. It was the end of the program when all classes joined on stage and the oldest classes (Mr. Man’s included) were to come forward and create the manger scene. Monkey had spotted me on stage and attached himself to me as I was attending my class. I watched as the children filed on stage, but hadn’t yet spotted Mr. Man. Monkey became squirmy and decided to wander off toward the center of the extremely crowded stage, as I watched to make sure he didn’t do something he shouldn’t (this child has quickly become comfortable with his two-ness). Standing center stage among the wise men, Mary, Joseph, shepherds, and sheep was the Christmas star. A star costume covered 4-year-old whose face stuck out of a hole in the middle. To my horror, I see Monkey begin pulling at the star. I watch, from my spot on the edge of the stage, as he starts hitting the star. I am frozen. Why is he hitting the star?! Then, I look at the star’s legs. Wait, I recognize those pants. It was at that moment the star turned around to shove Monkey off of him that two things happened. First, my brain clicked in and I made my way across stage to retrieve Monkey (praying we weren’t completely obvious). Second, I realized that the star was Mr. Man! He looked right at his brother with that look that said, ‘I don’t care how many people are here, I am about to punch you in the face.’

Afterward, we all discussed the outtakes of that show and I am convinced we could win prize money. Apparently, we had a stripping child, another who fell offstage and into baby Jesus, and several other humorous incidents. But none of it mattered. Mr. Man was the star! He stood center stage in front of all those people with arms stretched out, shining brighter than anyone knows.

I was told later that the decision to switch costumes came last minute when the child who was originally suppose to be the star refused to wear the costume. No one else was willing to put it on. Mr. Man was the only child who would do it. When I saw him post-show and expressed my excitement, he looked at me and with the biggest, proudest smile and  said, “Mama, I brave!”

Yes Mr. Man, you are. You are the bravest person I know.dsc_0235

 

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Hope

As I watch the tell-tale signs, listen to the whines and see the temperature right on the edge: I steal myself for what I know is coming. I think about our schedule for the next week and begin making mental adjustments, shifting to the plan B’s. I have to laugh a little. It’s so funny how we just know. We know when something isn’t right, how at first they are just ‘off’ and then our worlds stand still for a little while. This time it was Monkey, but more often than not it is Mr. Man. Let me go back…

 

My husband and I had gotten good. We could accurately tell you 3 days before Mr. Man would get sick. (What a talent, right?!) Usually, it would start with his behavior, his moods, etc. We’d make a comment and within 3 days he’d be running a fever. We had become pros at this sad little game because for over a year Mr. man would get sick every 2-4 weeks like clockwork. There was a time period when we could predict it to the day, that is how regular they became.

 

There is nothing scarier than sitting up with your baby, in the middle of the night, helpless to help them. Both boys have asthma; many nights were lost to listening for struggled breath. But the fevers were different. Monkey had constant ear infections, but when we’d take Mr. man in after 3 days of fever… Ears, fine. Throat, fine. “Just a virus.” JUST?! After about 6 months, I was tired of hearing the phrase ‘just a virus’. Mommy sense was calling BS. You don’t JUST get a virus every 2-4 weeks. No one gets that sick without there being more to it. “Well, he’s in daycare.” Yeah, great. I don’t see any other kids getting sick THAT often. There are so many other things that could be going on and I was furious the doctor wasn’t looking more into it. Here’s the thing… No symptoms other than a fever. When I say fever, I’m not talking the 101-102 range that people I know consider high. Mr. Man goes big or goes home. He was ranging 104-106. I remember several urgent care trips where we were held hostage because Motrin wasn’t bringing it down. The fever would last 3-4 days and he’d be back to normal. Eventually, (after I bypassed my primary doctor) we were given a diagnosis of PFAPA, periodic fever disorder. We began treating at the onset of fever, one (0f three) doses and the fever was gone, with hopes we could spread the fevers further apart until they disappeared altogether.

 

As I sat watching, Monkey struggle with this round of illness, I found myself wondering. When was Mr. Man’s last fever? I couldn’t remember… was that even possible? I pulled out the notebook I had been using to keep track. 3.5 months… 14 weeks! We had a round of strep throat in that time, but that is something else entirely. 14 weeks without “just a virus”. 14 weeks without the fear of 106, seizures and watching every 2 hours to make sure Motrin/Tylenol was bringing it down to 102 (which is his magic number that prompts vomiting). I hesitate to say he’s beat this battle, but I have hope. And if we’ve over come this obstacle…

Hope is a great thing.

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*Update:

This was a journal entry I had written but not published. I wrote this approximately 6 months ago. In the past 6 months we have been “fever” free, other than the explainable bout with croup and other such expected illnesses.

 

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August: Enjoy the little things, they aren’t always little.

Mr. Man has always loved music. Some of my favorite memories, and home videos, are of our late night dance parties. Sleep was never “normal” in our house. It never failed, as soon as mom and dad were ready to collapse into bed, Mr. Man would be up and ready to party. We started playing music and he would dance around the living room. We hoped this would burn his energy, so we could go to bed. There was nothing funnier than a mop of blonde curls be-bopping around the room. He could barely walk, but he had moves!

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I will never forget taking him to see the movie Frozen in theaters. He wasn’t feeling particularly well and spent most of the movie with his head on my chest. But during the songs, he would perk up and bounce along. Of course, after that the soundtrack became part of our daily routine. I remember the rage that became Elsa. I remember watching Facebook videos of my friends’ children belting out Let It Go. I would watch Mr. Man dance along, silently.

It hurt….a lot. Why? Why couldn’t he sing, like the others? After all, children far younger than him could at least say “Go” at the end of each line. It took a long time, and Mama is far from patient. But Mr. Man started to sing.

Children with Apraxia have a difficult time planning speech. So a conversation can be difficult for them. They have to form the words in their head and then muscles have to make the speech occur. It is far easier for them to say things that don’t require a lot of forethought, things that come automatically, like singing. When you sing along to your favorite song you don’t have to think about what comes next, you know. It’s automatic. I have noticed Mr. Man can follow songs in a way he could not otherwise do while trying to maintain a conversation. He feels successful, and Mama sure loves to hear his voice.

Now, at 4, Mr. Man still loves music and asks for “songs” the second we get in the car. His favorites include Frozen (of course), Veggietales, Lego “Awesome”, and selections from Home, Zootopia and Despicable Me. But nothing….nothing….makes this Mama’s heart melt more than hearing him belt out Redbone’s Come and Get Your Love. So, if you pull up to me at a stoplight and see a huge smile on my face, it’s probably because Mr. Man and I are dancing in the car.

We choose to celebrate every success. Every.Day. So, sing baby, sing!

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July: Tall Tales

So, most parents have stories of their kids getting in trouble for talking too much. Oh, to have those problems! Mr. Man CAN talk now (boy can he…when HE chooses to) but he still makes a lot of speech errors and can be very difficult to understand. His teacher, from last year, told me it took 4 months before he was comfortable enough to talk to her. 4 months! This year, he is 1 month into school (new class, new teacher) and he’s just starting to talk.

Alright, so here’s the situation that happened a few months ago (I am VERY slow at getting my thoughts typed). Our family was getting a new pet. We had a terrarium and I asked the boys what pet we should put in it. Mr. Man was adamant….. we needed a T-Rex. I tried to explain that a T-Rex would not fit in the cage and that one probably wouldn’t be happy living with us.

We got a snake.

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Ekans

 

A small, little corn snake. Mr. Man named him Ekans, because “Ekans a snake, not dinosaur”. Mr. Man went to school, excited to tell everyone about his pet. That afternoon, one of the assistant teachers came to me and said that Mr. Man told her a story all about his new pet. Of course, I was thrilled. He’s talking, willingly!! But she said she just had to check with me because she couldn’t tell if his story was true or if he was making things up.

At this point, I was confused. Why wouldn’t it be true? I told her yes, he had a new pet. She said yes, he was very excited and kept telling her that. But she just had to ask me…what kind of pet did he get? At this I paused, and asked what he told her he’d gotten. She laughed, “A T-Rex!”

He’s getting there. His dreams are big, and I can’t wait to see were they take him.

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