The Battle Before

So, here’s the thing about being a parent of a child with “High Functioning” Autism….

I wish people understood.

I wish they understood the battle. The daily fight that occurs before we arrive at any given place. Then maybe, just maybe, they would be able to understand why I am always on edge and perpetually exhausted. Maybe then they would have a better understanding of why I don’t care (unless it’s mid-summer) where my kids’ shoes are.45077208_10214439990247726_9160495227469824000_o

I get it. My kid can put on a show. We know this. Although, as he gets older it does seem to be more difficult for him to hide because the differences are becoming more apparent. I know when you meet him you see a kid who is quiet, well behaved and excited to be part of the group. I get that it takes getting to know him and spending time with him before you can glimpse into our world. “He’s fine,” you say, as you wonder why I seem overly concerned. “He’s SO good!” You say and wonder about a comment I made about our difficult day. But what most people don’t understand is that in order to get to the moment they see, we’ve already waged full-on battle at home. Let me share an example…

Going to church

His teachers love him. They always do. “He’s so sweet and good!” For this I am glad, I truly am. But usually, after I have battled him, I battle myself and wonder if I should have flown the white flag and stayed home. Was it worth it?

Getting dressed… Just because we’ve worn the shirt 50 times just fine does not mean it’s not going to be itchy, too big, too small or simply the wrong color today. There is no precedence to the crimes committed by clothing. Believe me, if there were rules…I could dance that dance. But there aren’t rules. Don’t even get me started on the evils of socks and shoes.

Then, there is the breakfast battle. It’s not what he eats, but how much. Usually, around third breakfast, he is banned from the kitchen (no joke, I have considered a locking fridge) it’s non-stop and it’s obsessive behavior. By now, we are usually in a ball crying because he has realized my intention is to take him outside of the house. “BUT I DON’T NEED TO BRUSH MY TEETH!” Sorry, $1500 in dental work states otherwise, kid. No deal, negotiations over, the line is drawn.

I am already tired. Not to mention, 4-year-old Monkey with his own temper and opinions has stripped and been reclothed at least four times by now. Throw in some brotherly squabbling, hitting and possibly some biting and we have a fairly typical morning.

Today’s outing (church) is a treat… Spring Festival. Which means today Mr. Man does not need to suffer through the torture that is Worship. He hates this and it would mean certain death if it wasn’t for our ever handy noise canceling headphones– which we managed to misplace the week before (THAT was a bad morning!) The kids get to enjoy bounce houses, face painting, balloon animals and popsicles.

However, this change in routine has confused him and he leaves his class no less than three times to come get me during service. The teachers (who are just outside the door and are still getting to know him) seem confused by my concern that he has interrupted service. It’s not the interruption that concerns me, but that he has left without telling anyone. Yes, he seems like all the other kids for the most part. But, please be aware, when confused he becomes a flight risk.

Don’t get me wrong, I am not upset with the teachers. Most 6-year-olds do not require this level of supervision. However, Mr. Man lacks an understanding of cause and effect. He is impulsive. He does and does not think. He appears to understand directions (but if you gave more than one, he doesn’t) and they are not yet in tune with him. You can see why I am always a bit on edge. Most people aren’t as tuned into him as I am. I think “High Functioning” often causes people to overestimate his understanding and underestimate the need for diligence.

I have now spent the service thinking about morning combat, his flight risk, and the effort it takes to pretend everything is “Great!”

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So yes, I did just go into life-saving action to spare balloon Spiderman from an untimely death by blade of grass.

Nope, I am still not concerned that his shoes are AWOL.

(BTW- I keep extras in the car.)

 

 

(This post contains affiliate links, as an Amazon Associate I earn from qualifying purchases. However, I never recommend an item unless we use it and love it! Any items linked are items that I have been recommending to friends and family long before this blog!)

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Things We Love…

Okay, Autism Mama’s, let’s be real…. life is crazy! I wanted to take a few moments to share a few items we have found that have made our lives just a little bit easier. Because, anything that can make a struggle a little easier is GOLD!

Noise

Mr. Man struggles with loud noises. Public restrooms are torture. Movie theaters are too loud. A classroom of 30 talking   kids, overwhelming. A screaming younger brother- the worst! Someone suggested we try noise canceling headphones. We got these sport earmuffs and they have been a lifesaver! He now reminds us to bring them and knows to get them from his pack independently when he is getting overwhelmed. They helped him tune out the kids chatter and focus on his teacher’s voice. We can’t go to a movie without them. I have a different pair that folded smaller for portability, but the process to unfold was too complicated and took away his ability to be independent while using them. We love this set!

 

Water Bottles

Water bottles have been a constant struggle for us. We live in Arizona, he needs to bring a water bottle to all activities. However, motor delays make opening most water bottles an issue. If he CAN open the bottles there was always the issue of them breaking with one drop. We drop water bottles… a lot. I needed a more durable material. Water bottles are pricey and I was over them breaking the first time we used them. The other issue was that I had to be able to clean it. If i need to disassemble 20 pieces and use some type of Swiss Army cleaning tool…forget it! I don’t have that kind of time. I look for 4 things when buying water bottles.

  • Durability
  • Mr. Man’s ability to operate it independently
  • Price
  • Ease of cleaning

I came across Contigo Kids Trekker water bottles and love them! They meet all my criteria and both boys love them. My only complaint is that I wish they were a little larger.

 

Bento Style Lunch Boxes

When Mr. Man was in Preschool, I had a problem which I have heard many parents struggle with. I would pack a lunch with a variety of food and I find out teachers were deciding what was appropriate to eat first, last, etc. and would only open (because he wasn’t independent in this skill) certain items. This frustrated him and irritated me. I didn’t pack junk and anything I packed, I wanted him to be able to access. I needed to find a way to give him access and independence. After some searching, I came across the Yumbox. These boxes are great. With the flip of one latch he can access everything I pack. No more overly opinionated teachers dictating his lunch and he no longer depends on others to open all of his food. This became even better when he started Elementary school and he didn’t need to ask for help with his lunch. The boxes are fun and appealing, too. They are also truly leakproof. Yogurt and applesauce…no problem! The containers come apart into 2 pieces for easy cleaning. Note: The outer shell (with silicone for sealing) is NOT dishwasher safe- this will destroy the leakproof seal. I found it best to simply hand wash these with a soft cloth.

 

Pencils

Mr. Man struggles with handwriting. He has a strong grip and pushes hard. We prefer mechanical pencils because pencil sharpeners are either loud or difficult to use. However, his grip is so hard, using a regular mechanical pencil is pretty much impossible. They break more than he is able to write. Then, I found these Handwriting Pencils by PaperMate. The lead is 1.3mm, so it holds up to his intense grip without breaking. Its triangular shape has been wonderful in reminding him how he is to hold a pencil (also, amazing for Monkey who is just learning to write and his hold is awful!) I am so impressed by the improvement in their handwriting since we found these.

 

As you can see, we strive for independence. I can’t always be there to help him and we cannot expect the world to change for him. So, we strive to get him the tools that allow him to be successful and independent. Hopefully, some of the things we love will help make your day just a little bit smoother. Goodness knows, we could all use smoother days!

 

(This post contains affiliate links, as an Amazon Associate I earn from qualifying purchases. However, I never recommend an item unless we use it and love it! Any items linked are items that I have been recommending to friends and family long before this blog!)

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What I Learned My First Year Homeschooling…

29064136_10212772547282694_7215172234656523124_oWe have officially been homeschooling for a year now. I see so much growth in the boys and I have learned so much, myself! As I reflect on the past year, I thought I’d share 3 things that I have learned…

  • De-schooling is a real and necessary thing.

I use to hear this term ‘de-schooling’ and I would laugh….that is NOT a thing. Why waste time? Get in a routine and get started. Okay, I am not above admitting that I am wrong from time to time. Okay, I am pretty much wrong most of the time. But here is what I learned about transitioning from traditional school to home. School is hard! It’s even harder on our little ones, and harder yet for those who have struggled. We bring our children home with these lovely visions of magical things in our heads. But our kids….they just see it as home, it’s their safe place. If your child is anything like Mr. Man, then you just brought home a little ball of stress and anxiety. Now, he’s home and starting to relax when, boom, you decide to go all teacher on him. Stress BACK! But now, it’s entered his safe place. I like to think of it as mini-PTSD.

  • Don’t be married to a curriculum.

Yes, I get it..curriculum is expensive. However, please do not feel that if you chose a curriculum, you HAVE to finish it. If its not working, STOP! I am on my fourth math curriculum this year (math is hard) and that is JUST math. *Face Palm* There are many reasons this happened. The biggest reason being that a year ago, I wasn’t in tune with Mr. Man’s learning style. I chose curriculum I liked. Wrong! (Important for sure, but wrong). It is important that both of you enjoy the curriculum and it fits your child’s learning style and needs.  It can take awhile to figure this out. We are getting there, I don’t think we are there yet. But, I feel closer with each step we take. Plus…..shh…I may have a slight love of curriculum and an inability to make decisions. I want them all! I may need to seek help. But really….if something isn’t working, toss it up on ebay and move on! No one has time for that.

  • Focus on what is most important.

I had 3 goals for Mr. Man when we started a year ago.

  1. Spend more time outside.
  2. Learn to read.
  3. Learn addition facts.

I recommend posting these goals somewhere visible. I find that I need a constant reminder to keep myself focused. I often get sidetracked trying to do everything at once. Often, I find that I revert back my classroom teacher way of thinking. I get overwhelmed and my boys mutiny. When I simplify and focus on what is most important, we are all happier. They learn more and I am reminded of WHY we started homeschooling to begin with. I am happy to report that we are reading….voraciously! Our addition facts are coming, it depends on the day. This frustration is another post altogether. One day he knows them, the next it might as well be Greek. Sigh. We have spent more time outside. Not as much as I’d like, but it’s a start. 

I am excited to see what the next year holds for us. Monkey is now joining us at the table and is going to be my math whiz. He’s already shown us that he will keep us on our toes and is going to be a completely different monster than his brother. Aren’t kids fun?

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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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