<![CDATA[Home Is Where The Autism Is - Brandie's Blog]]>Fri, 19 Jan 2018 01:14:20 -0600Weebly<![CDATA[Kids' Night In - Our First Month]]>Sat, 06 Jan 2018 22:49:29 GMThttp://homeiswheretheautismis.com/brandies-blog/kids-night-in-our-first-monthAs Christmas approached, my stepmother reached out to me for gift ideas for the kids. I had just seen Kids Night In advertised on Facebook and thought it was a great concept. I also knew that the kids were getting plenty of clothes, video games, Legos, and books, so I thought it would be good to get something different that would also encourage family time. She agreed and said she would order four months for them. The first shipment arrived right before Christmas, so I was able to wrap it and put it under the tree. This past week, we opened it up and had our first Kids' Night In. This is our experience.

When the box was opened, there was a book about polar bears, an itinerary for our evening, two sheets of painting paper, a roll of masking tape, three pipe cleaners, a bag of beads, a small bag of popcorn, a few peppermint candies, a packet of candy to be microwaved, a white crayon, some animal yoga cards, a sheet of star stickers, and some watercolor paints.

The first activities were learning-based. I read the book about polar bears to the kids. We all learned a lot, and the pictures were great! Of course, what else do you expect from National Geographic? The kids were super unimpressed by the jokes in the book, but I thought they were hilarious. Why do polar bears have fur coats? They look ridiculous in jackets! :) 

After we read the book, our itinerary had a little lesson on the Arctic that I read to the family.
Here's what I saw when I opened the box.
The first hands-on activity was making snowflakes out of pipe cleaners and beads. And this is where we ran into our first problem. There were only three pipe cleaners included. Each snowflake needed three pipe cleaners. So, we did not have enough for everyone to participate. Luckily, I happened to have some in our garage, so we used those. I found it odd because there were so many beads! The instructions were a bit challenging for the kids, so Tom and I helped them to shape and twist the pipe cleaners so they could apply the beads. Hey! Look at this fun occupational therapy activity without them even knowing they're doing OT! 
The next activity got us out of our seats! There was a stack of adorable, good quality cards. Each of the 14 cards had a winter animal and yoga moves based on them. This activity was fun but not without injury! You see, when the kids weren't understanding the directions for the Snow Bird, I confidently decided to show them...and promptly and very painfully pulled about 12 muscles in my body! I was moaning and writhing all over the kitchen table while my bewildered family looked on. It was hilarious and also incredibly painful and sad! (When did I get so old and out of shape?!) So, this activity was a bit shortened, and I didn't get too many pictures. We'll try this one again another time!
After the pain eased to a dull ache, it was snack time! There were two recipes in the itinerary book. We went with the easier of the two. I was shocked by how little popcorn was in that bag! We considered popping more, but just went with it. I had to blend the peppermints to turn them into crumbs and microwave the candy. I don't think we ever really achieved the consistency of the candy, but we tried. We then mixed the peppermint into the candy and drizzled the mixture on top of the popcorn. Okay, that's a lie. The consistency didn't allow for drizzling. I plopped it on. Then, I split the little snack between the three of them. They LOVED it!

While the kids had their snack, I put Tom to work. Now, we ran into another little problem here. The next activity was an art/painting activity. Only two sheets of painting paper were included. So, I improvised. I had some white card stock and cut a piece in half. The book offered two ideas--one for younger kids, and one for older. We went with the idea for younger kids. I handed the paper and white crayon to Tom. He copied an image in the book of a polar bear and drew one on each child's paper.

Then, the kids affixed stars to their papers and covered their papers with paint. The polar bears appeared! We also sprinkled salt onto their paintings to give them a winter appearance. When the paint dried, we peeled the stars off.

The masking tape included in the box was meant for this activity. The kids had the option of using it to create birch tree outlines on their pictures. None of my crew wanted to do that. So...we ended up with a big, new roll of masking tape! Bonus!
All of the activities probably took about two hours or so. I should have checked the clock better! We all had fun--minus the pulled muscles, of course! And the biggest issue was the missing items in the box. 

I did try to reach out to the company this past week--through their Facebook page and their company website to ask about how many children are expected to be able to participate. I also wanted to ask how many pipe cleaners we should have had. I have to believe there should have been more than three. Also, the book said that there was supposed to be sprinkles for the popcorn snack. We had no sprinkles in our box. Again, I was able to use sprinkles I had in my pantry. They have not responded to my messages.

We all had a great time though, and we are all excited to see what the next month brings. I do think that I will check the box ahead of time next month so if I don't have enough supplies included, I can get them before we begin.
<![CDATA[Fixing a Wrong]]>Sun, 08 Oct 2017 20:04:59 GMThttp://homeiswheretheautismis.com/brandies-blog/fixing-a-wrongI am currently dealing with guilt of the worst kind...Mom Guilt! If you are a mom, I bet you can relate. 

I am currently taking part in a year-long advocacy training program called  Texas Partners in Policymaking. With each new speaker/trainer we have had, I have learned more and more that the things I fought for have been the wrong things. You know that moment when you hear something that just makes you feel like you're being punched in the gut? Yep, that is what I have experienced repeatedly these last few months.

I have made, I fear, terrible decisions for Koby's education. I have made damaging assumptions about his, his peers', and his possible teachers' capabilities over the years, and I have allowed him to be segregated away from the general school population for too long. 

I cannot rest until I make it right.

Koby is a nine-year-old, fourth grade student. He began public school education when he turned three and has been in structured classrooms that serve autistic students during his entire school career.

He has been placed in classrooms with knowledgeable, loving, encouraging teachers every year. Our family has come to love and cherish these teachers who so often become very present in our personal lives. So, from the get go, let me say that I am NOT at all blaming them or saying they are not fantastic educators. They have all been awesome!

It is the system that I am finding fault...and I place the most blame on my shoulders because I have sat in meeting after meeting and supported the decision to keep him where he is. I have been his most powerful advocate, and I advocated him into isolation from his neurotypical peers.

Koby has spent almost all day, every day in these classrooms. I consider them to be self-contained because with the exception of lunch and specials (art, PE, computer, etc.), he stays in his classroom with a very small number of peers. And his participation in lunch and specials is fairly recent. A diagnostician (whom I admire and respect deeply) corrected me when I called it self-contained, but I stand by my statement because, for Koby, it is apropos.

When Koby began school, he was not potty-trained, he had little language, and his behaviors were fairly severe. Aggression, long meltdowns, and destruction, which lead to restraints or the clearing of the classroom were very common occurrences.  

Over time, his language exploded, his behavior stabilized, and fewer meltdowns and restraints occurred. He still has bouts of aggression and destruction, but they are not like they were before. Perhaps, and very likely, the structure and stability of his structured classroom setting helped.

I have come to learn, however, that being away from his peers for his entire educational career is not preparing him for life after school. As one of our speakers, Patrick Schwarz, so deftly said, "There is no self-contained Wal-Mart." He reminded me that Koby, like everyone else, belongs everywhere. Koby deserves to be a real member of the school community, and the school community deserves to have Koby among them. 

We aren't preparing Koby to interact with them, and we aren't preparing them to interact with Koby. We will all be together in the community, and that training needs to start now!

Academically, Koby is nowhere near the level of his typically developing fourth grade peers. Unable to read, write, or do math, he is much more like a beginning kindergarten student. For years, the school has used a sight word reading program with him, but he has not retained any of it, and though he loves books, he, sadly, cannot read a word within them.

In the last few weeks, he has started to learn some basic addition and subtraction. If it is single digits, and no higher than ten (when he runs out of fingers), he has been doing well! 

He is ecstatic and proud, and so am I!

But this is as much math as he has ever learned or mastered in his life.

Koby has been tested for an intellectual disability twice. Both times, his scores fell into that range, but both evaluators believed that his autism was to blame, not his intellect. They believe that his communication deficits, instead, have impacted his learning, and they feel that over time, his score will rise. So, he does not have that label currently affixed to him. 

I don't know why Koby is so far below his peers. It doesn't really matter if it's autism or an intellectual disability. The reality is the same.

Either way, I can't help but wonder if he would have learned a bit more in a typical classroom, with plenty of supports in place, surrounded by his peers.

This is the essence of my guilt.

So, I have been  actively taking steps to fix this wrong.

I had no idea where to best begin. I know that because he has not learned any of the prerequisite skills of his peers, it would be a disaster to drop him into a fourth grade classroom. He would have no meaningful learning, and frustration would certainly lead to an increase in meltdowns, aggression, and destruction.

So, my idea was to let him participate in learning activities with kindergarten students. My theory was that if they were doing a reading or math lesson, Koby could participate and start learning the skills and classroom behaviors that he has not yet mastered.

I asked the principal and special education teacher for an informal meeting, where I shared this unusual idea. I called it a grand experiment. To my delight, I was not laughed out of the school. I was asked some probing questions that I had to admit I did not have an answer to. The meeting was positive, though, and we closed it with the plan to reconnect by phone after the principal could do some more exploring of the topic.

After a few more conversations in the coming weeks, it was clear that my vision was unlikely to happen. 

A second meeting was called, and this time, the attendees were a general education teacher, the principal, two diagnosticians, a behavior/autism specialist, and me.

We spoke for a couple of hours, and I shed many tears in sadness, frustration, and guilt. My desire to end Koby's segregation is complicated by his current placement, age, and overall limitations of the education system.

All participants agree that it is time to give Koby more opportunities for inclusive education with his peers. 

We disagree on the best way to go about it.

I was told that there is no way to let Koby participate with younger students' learning. It does not matter that socially and academically, he is on their level. 

The prerequisite skills have to be taught in the structured classroom, and then they want him to go to the general ed classroom afterward.

I made it very clear that my long-term goal is for him to be with his peers, not in a classroom on a faraway hallway. 

The current plan is to take him in to spend a little bit of time with a fourth grade classroom during science class. He enjoys science, so it seems like a good place to start. The general ed teacher will have to collaborate with the structured teacher to find ways to include Koby and to help him be able to express his understanding of the lesson in ways that do not involve writing. 

More emphasis will be placed on his reading and writing skills, and the autism specialist said she would explore different reading programs to use with him to see if a better option is available.

I shared several resources with them all while I was there in hopes that they would benefit everyone as we begin this journey.

We have scheduled an ARD to put this plan into place formally.

So, where am I now? I'm still frustrated and dealing with extreme guilt. I do not believe I am being successful in my current advocacy for him, but I am not giving up.

It may take time, a very long time, but I will fix this wrong. ]]>
<![CDATA[The Party I Wouldn't Let my Son Attend]]>Sat, 26 Sep 2015 21:23:12 GMThttp://homeiswheretheautismis.com/brandies-blog/the-party-i-wouldnt-let-my-son-attendAs I was getting ready for work yesterday, I received a text from the mother of a boy who rides my kids' Special Ed bus. She was writing to see if Troy could come to her son's birthday party.

I eagerly told her that I was sure he could come and even said I would give him daytime allergy medicine to prevent their pet cat from being a problem for him.

Then, the mother sent a follow-up text message to tell me what kind of party it will be, a Halo tournament.
I had no idea what Halo was, but she explained that it is a non-gory, fantasy shooting and fighting multi-player game.

I was a bit uneasy when she told me that. I'm quite overprotective and totally anti-gun. (I don't even let the kids play with water guns because I don't want them to think of guns as toys.
Yes, I've been told I'm crazy for that one on more than one occasion!)

Later in the day, I looked up the game and found out that it is rated M (Mature) and for ages 17 and up. Troy is 9. I have just started to let him play a few video games rated for ages 10 and up, and that has made me uneasy!

I felt very conflicted. As a result of his autism, Troy does not relate to his peers well and does not have friends. It is not likely that he will be invited to another party for the rest of the year. He loves video games, and though I don't feel comfortable with shooting and violence, I wondered if I should ease up and let him go. What sort of damage could a couple of hours of playing a video game really do? And the opportunity to get to hang out socially with some of his peers is a rare experience!

But I also know Troy better than anyone. I know how impressionable he is. I know how he struggles with his emotions, and a violent video game is not appropriate for him. I know how fixated he becomes on things as well, and I know that he would become obsessed with the game if he were to play it.

I felt like a middle school girl again. What would the boy's mother think of me if I said no to him going? Would she think I was an overprotective, uptight, weirdo? How would she judge me?

Yes, I'm 36-years-old, and I admit that I worried about not being cool!

I told myself to get over it and just be honest.
I texted the boy's mother and told her what I had discovered about the game and my concerns. She was understanding and offered a solution so Troy could come to the party anyway. What if
he came for the beginning of the party and left before the tournament began?

I knew that would not work. I knew the other kids at the party would be excited to play the game, and Troy would become incredibly angry and upset if I forced him to leave, knowing that they were about to play without him.

I told the mother that I would do further research  before making my final determination. So, last night,
after the kids were in bed, I sat and watched several videos of people playing Halo. I must say that the graphics were impressive, but the game itself was full of nothing but shooting and guns.

It did not sit well with my soul. The decision was made.

This morning, I texted the mother and told her that after further consideration, Troy would not be attending the party but that I would love if our boys could get together soon.

The anxiety that had weighed me down for over twenty-four hours lifted, and I felt peace, which led me to believe that I had made the best decision for Troy's well-being.

The mother has not responded to my text yet.  I do  wonder what she is thinking about me, but it doesn't matter.

I know that a
s a parent,
I must do what I believe is right, even when it is difficult.

<![CDATA[On Our Role as ParentsĀ ]]>Tue, 28 Apr 2015 01:41:34 GMThttp://homeiswheretheautismis.com/brandies-blog/on-our-role-as-parentsA few days ago, we had a pretty disastrous family game night. It was clear that we were torturing Troy by making him sit at the kitchen table and play an interactive game. He wanted to be by himself in his room instead.

At one point, he even said, "Mom, I was not created to spend time with other people. I was made to be by myself."

Troy has autism. Social interaction is difficult for him, and he is much more content being by himself than spending time with others.

So, when he made these statements, he was self-advocating, which I want him to do. He was saying he wanted me to respect him and his needs.

In that moment, I was torn. I suddenly wondered if I was making a mistake by making him spend time with us. Was I being disrespectful and not honoring who he is? Or was I doing the right thing? Was I, as I hoped, helping to prepare him to live in a world that will demand that he interact with others if he is to be successful?

I wasn't sure, but I didn't let him go to his room. I held the demand and told him, "Troy, in a family, you spend time with one another. We are having family time, and since you're part of this family, you're going to play with us."

We muddled through, albeit quite miserably, and finished the game.

I was still unsure if I had made the right choice in how I handled the situation. The uncertainty has weighed heavily on my heart.

Today, I shared this story with his therapist and asked her I had made the right choice? Or had I dishonored his needs by forcing him to play with us?

She said, "Our job as a parent is not to make our children happy; it is to help shape and mold them for their future success."

It was such a simple statement, but it lifted a huge weight off of my shoulders.

At that moment, I knew I had made the right choice.

In school, he will not be alone. In fact, he will have to work with partners and groups often. In a future job setting, it is likely that he will have to interact with others in some capacity. In family-life, he has to be able to
communicate with and tolerate others. In short, he has to learn that he cannot always be isolated, and he needs to learn strategies to cope with his discomfort.

She did give me one piece of advice to try next time; she suggested I use the First Then system with him. If you're unfamiliar with this, it basically just reminds him that this undesirable activity is not going to last forever, and then he gets to do a more preferred activity. For example, I could have said, "Troy, first, you're going to play this game with us, and then, you can go spend time in your room."

It was valuable feedback, and I will definitely use it in the future.

I know that very few of us strive to be the "cool" parents or want only to make our kids like us. Still, it is easy to second guess the decisions we make and wonder whether we are doing some long-term damage
with our well-intentioned actions. In those moments, let's all remind ourselves of our role as their parents and be willing to push them, gently, out of their comfort zones, knowing that we are preparing them for what is to come.

<![CDATA[Goodbye, Grandma Barbara]]>Sun, 11 Jan 2015 18:42:42 GMThttp://homeiswheretheautismis.com/brandies-blog/goodbye-grandma-barbaraSurrounded by her husband and five of her children, my Grandma Barbara died Friday night. Intellectually, I obviously understand that we all die. I understand, as I look at the many beautiful babies filling my Facebook news-feed, that one story has to end for another to begin. Knowing this doesn't make the pain of closing a beloved story any easier though. Her story was, of course, a significant part of mine. 

I have a gigantic family; I am not exaggerating. I honestly do not know how many cousins I have because there are so many generations in our close-knit family, yet my grandmother never made me feel like a face lost in the crowd of ever-expanding family. This was not because I was more special than the rest; she loved everyone and made sure we all knew it.

She had the sweetest, gentlest voice I ever heard. I do not recall a single time that she raised that voice in anger at me. If she had, I know it still would have sounded as sweet as sugar. 

When I was six-years-old, I lived around the corner from my grandparents. I decided to run away from home, and it was their house I was going to. I just knew she and my grandfather would love to have me! (That darned trash-bag full of toys ripped as I dragged it a full two doors down as my parents watched, and I didn't make it to my destination.)

She loved to cook and bake for her family and remembered the favorites of them all. Growing up, she used to bake me angel food cake and her famous strawberry cake. One of my most cherished memories is when she came to visit me at my home in Texas. She stood in my kitchen and taught me how to make that strawberry cake. I felt like I was inheriting the keys to the kingdom! 

We never had a conversation that didn't include her telling me how proud she and my grandfather were of me. I never doubted that she was genuine. She believed in me; she bought me my first hard-back book, Alice's Adventures in Wonderland, when I was seven years old--a book I still have and cherish. 

She has been ill for quite some time; her death was not a surprise. When it became clear that her death was imminent, my mother was at her bedside. She offered to hold the phone up to her ear so I could say goodbye. I could not do it. I was ashamed of my weakness, but I didn't have the words. It hurt too badly, and I didn't want to accept the fact that this sweet woman who I loved, who I used to spend the night with, who made the best pancakes, who patiently listened to the repeated and long (though interesting) stories of my grandfather, who always had a twinkle in her eye, who loved us all, was truly gone. When I got the phone call on Friday night that her suffering was over, one reason I cried was that I did not say goodbye or take the opportunity, one last time, to tell her that I loved her.

That night I dreamed about her. She came to me, and though I do not remember a word being spoken between us--she smiled at me with that ever-present twinkle in her eye and held my hand. I knew she was telling me it was okay and that she loved me. When I awoke on Saturday morning, I had a tremendous feeling of peace. I know it sounds ridiculous, but I believe that she was with me, comforting me; that is who she was. 

Grandma, you are loved. Thank you for a lifetime of happy memories, delicious food, and love.]]>
<![CDATA[Why You Should Look Back]]>Mon, 20 Oct 2014 01:59:39 GMThttp://homeiswheretheautismis.com/brandies-blog/why-you-should-look-backIf you are on Facebook, I bet you have seen people post old photos or status updates from their Timehop apps. If you're unfamiliar with the app: it allows you to link your photos and social networks to it, and everyday, it shows you what you posted on that date in history. It can be quite fun to be reminded of your past exploits and to see fun, old photos. I'm finding I like it for another reason though. It is allowing me to look back on tough times and to reflect on how much progress has been made. 

Two years ago today, I posted a very long status on Facebook. I spoke of having a conference with Troy's teacher and finding out that while an increase in ADHD medication was helping his behavior, he was still not conversing with the other children and needed many accommodations in order to be successful. On that same day, I met with the special education teacher about Laura and found out that she had been so out of control in class that help had to be sent for the teacher. Next, I met with the school counselor--who had been working with both Troy and Laura. She suggested that Laura needed a special education counselor and that she foresaw years of intensive work for Laura and years of behavior difficulties. She also suggested that Troy could have Asperger's (this was obviously before the revised DSM). 

At one point in the post, I wrote:

"I am so incredibly sad and frustrated and angry that they all have such mountains to climb. And I am feeling so unprepared and inadequate and hopeless.[...] I just wish it wasn't so hard."

I read this old post when I first woke up this morning, and throughout the day, I've read it six more times. When not reading it, I've thought about it.

Two years ago today, I had never even considered that Troy could be on the spectrum. Two years ago today, Laura was kicking people in her class and throwing such out of control meltdowns that extra help had to be brought in to remove her from the room. Two years ago today, every single day, I had bad news from school for one, two, or three of my children. Two years ago today, there was never a good day. Two years ago today, I truly did not know how to move forward or what to do next. Two years ago today,  I felt like I could not do this. I was hopeless two years ago today.


In the last two years, my little family has made such tremendous progress that it is truly miraculous. It hasn't been easy. We have had amazing educators, therapists, specialists, doctors, and medications to help us. We've worked hard at home to maintain strict routines and expectations. Our journey is nowhere near over, and it is still a very challenging one, but I am amazed and grateful at how far we have all come. 

We still have bad days. We still have really bad days. I sometimes cry. Sometimes, I get frustrated and angry, and I worry about what the future will hold for us. But those days are fewer and fewer between, and I can usually calm myself down with a nice shower and a good night's sleep. (A bit of ice cream helps, too!) 

Looking back helps the most though. It's so easy to forget what has happened when and how much progress you have made. Recording it when it happens so you can look back at it later makes all the difference in the world. I'm not saying you have to be like me and share your life publicly on Facebook or on a blog. It can be a journal or whatever works for you. Writing, in itself, is so therapeutic. Looking back on the old events that you have written about is also therapeutic. 

This does not just pertain to parents of special needs kids. This goes for everyone! We are all works in progress. I love looking at how far my children have come, but I also love to see just how far I have come! I no longer feel paralyzed with fear, feelings of inadequacy, or hopelessness.  I have made great progress, too.

I understand that, at times, the past is painful to remember. It's not fun to remember feeling hopeless. But reflecting on the past can empower you by showing you just how strong you are and how much you have overcome. 

So, I encourage you in someway, whatever works for you--to start jotting down bits and pieces of your day--the good and the bad! A year from now, two years from now, three years from now, you'll be glad you did.]]>
<![CDATA[Advocating Goes Beyond the Classroom]]>Sun, 12 Oct 2014 21:01:06 GMThttp://homeiswheretheautismis.com/brandies-blog/advocating-goes-beyond-the-classroomEarlier this week, I attended a seminar put on by my children's school district entitled Hope With Autism. The speaker was a counselor in private practice who works with kids on the autism spectrum. 

I was excited to listen to him, to learn from his wisdom and experience, and to be inspired. I brought a notebook and several pens to jot down the important points I wanted to remember. He had a PowerPoint presentation, and while many cringe at them, I have a bit of glee when they are used because I am a serious, detailed note-taker, and they help me in my endeavor to ensure I get every single point recorded.

Early in the talk, a slide listed "symptoms" of autism. I could not focus on anything else on the slide beyond the word "symptoms." Symptoms. I could not stop staring at it! The word made my stomach hurt. Its implication is nothing but negative. 

Look it up online; this is what comes up (I bolded a few words for emphasis.).: 
  • a physical or mental feature that is regarded as indicating a condition of disease, particularly such a feature that is apparent to the patient.
  • a sign of the existence of something, especially of an undesirable situation.

I was hurt. I was offended. I was even a tad bit angry.

My sons are not sick! They do not have a disease! And while we have challenges every single day, I do not think of their diagnoses as an undesirable situation. Truly, I do not! They are who they were designed to be, and I adore them! 

This does not mean that I don't do everything I can to give them tools to be successful in this society. This does not mean that I don't have days of frustration or sadness. I do. I am human. 

BUT-I love the way their brains work and the way they view the world. I love their spirits, their perspectives, their humor, their insights, their absolute uniqueness. 

I stewed as I stared at the slide. All these thoughts and more went through my mind as I stared at the word, and then, I had a thought of clarity and became instantly calm.

'He is here to help, Brandie! He had no intention of upsetting anyone, and instead of vilifying him over the use of one carelessly used word, do something!'

Obviously, I wasn't going to interrupt the presentation, so I jotted down a note to myself and then decided to give him my full, open-minded attention.  

Well, later in his presentation, he showed a clip from Autism Speaks and also referred to them as a great resource to the families in the room. 

Again, I was disappointed, but I talked to myself. Like so many others, he was probably unaware of the dissatisfaction so many have for the organization. After all, I have only been educated and convinced about the negative impact AS has on the ASD community in the last year.

I made another note for myself.

I listened to the rest of the presentation and concentrated on being a positive and supportive face in the crowd for him. Reminding myself that he was here as a positive resource for the audience members and that he meant no harm by the things that had offended me helped me do so.

Still, I knew that if I was truly wanting to affect change, I would have to, somehow, share my concerns with him.

When he finished, I looked for an opportunity. I saw none. I was not looking for a confrontation or to have anyone else hear what I said, feeling like that would be incredibly rude. I saw no way to speak to him privately, so I left.

I found myself thinking about my concerns all night long and immediately when I woke up the next morning. At work, it was gnawing on me. I considered letting it go, not wanting to be confrontational.

Then, I thought of my boys. Fear of confrontation should never keep me from speaking up on their behalf!

I decided to e-mail him. 

I knew that I wanted to be helpful, not hurtful. I knew that I wanted my message to be welcomed, not shunned. I knew that I needed to offer solutions, not complaints.

I expressed my feelings and gave him some alternative words and resources to consider in the future. I explained that I did not want to offend and was coming from a place of genuine desire to help. I also thanked him for his work with kids like mine.

I hit send. I hoped it would be received well, but whether it was or not, I knew I had done what I felt was right. I had advocated for my children and all children and adults like them.

Ninety minutes later, he responded. He was gracious, apologetic, and open to my information and suggestions. He thanked me for my kind words. In short, he was wonderful, and I was grateful.

I am so glad that I did what my children deserve. I spoke up for them when they couldn't. 

Please, remember that advocating often goes beyond the classroom or the IEP meeting room walls. Please, also remember that very often, the people you want to educate are coming from a place of good intentions. Treat them as such. You may be pleasantly surprised how willing they are to listen.]]>
<![CDATA[They're Worth It!]]>Thu, 02 Oct 2014 03:10:05 GMThttp://homeiswheretheautismis.com/brandies-blog/theyre-worth-itYesterday was not a great day.

I had begun the day with tremendous hope! The doctor agreed with me that it was time to try an increase in Koby's Abilify. In five weeks of school, he had been formally restrained (because he has been a danger to himself or others) five times. On days that he hasn't had to be restrained, he has still had a bad day about 95% of the time. So, yesterday was the first day of the new dose. I just knew that it would work immediately! (In my defense, when I spoke to the doctor, she told me that we should see a difference pretty immediately.)

On my way to work, I called to speak to the special education teacher that works with Troy. I was concerned that his IEP was not being followed by one of his teachers. He came home with an unfinished assignment with a failing grade on it. It made no sense to me; he has an aide who helps him daily and the accommodation of extended time (1 day) for his work--in addition to other accommodations, such as reduced length and writing requirements. Our conversation was very positive in that he listened to my concerns, agreed that there was validity to them, and promised follow-up. I also called and left a message with the teacher in question, asking her to call me when she could.

Work was busy. As the day progressed, it got busier and busier, and that's when the fun began. Work is always my top priority when I'm there. Some days (okay--many days), however, I end up having to multitask more than usual, juggling phone calls or e-mails about the kids with the ever-changing responsibilities and challenges that come with my job. [Side note: I am blessed, blessed, blessed (!) to have a job that affords me the luxury of grace in taking care of my kids' needs.]

Troy's teacher called to speak to me. To sum up our lengthy conversation, she said she knew about his accommodations and apologized for having Troy slip through the cracks on this assignment. She said she would visit with the special education teacher to come up with some solutions. I explained to her that he needs tremendous supports in place daily in order to be successful.

While we spoke, I worked, splitting my concentration between our conversation and the work on my screen.

Later in the day, I received another phone call from the special education teacher. He had visited with the teacher
during recess, and they had come up with some strategies and plans to avoid what had happened. We had another very productive and positive conversation.

When we hung up, I looked at the paper in front of me. I had jotted down notes as we had spoken...and a line...and notes for a work-related issue that I was also concentrating on as we spoke.

Throughout the day, with all of the busyness of the work day and the juggling of phone calls about Troy, I still held onto a glimmer of hope that it would be a great day for Koby. I worried and hoped and thought and prayed and worried some more about how his day was going.

And then...the phone rang again. It was Koby's teacher, telling me that he had a truly awful day. He had to be restrained. Again. The room had to be evacuated of the other children. He was unable to calm down for over an hour at one point in the day. As she continued to relay the many, many challenges she had faced with my son all day long, I continued to stare at my computer screen and to do my damnedest to evenly split my attention between two very different thinking tasks and give them both the attention they needed and deserved.
And I could feel myself struggling and failing to do so.

The hopeful glow I had carried around with me all day was extinguished.

To make matters worse, I was supposed to have left work already. It was curriculum night at school, and I was going to be late. Obviously, I had to continue the important conversation about Koby, and I had to continue to plug away at my work. I could feel the stress level rise as I stared at the time on the screen, listened to the teacher on the other end of the phone, and wondered how much more work I could squeeze out before I left.

Eventually, we hung up, resolved that tomorrow was a new day. I closed down my computer and hurried to my car, frustrated that I'd be so tardy to the presentation at school. Still, I was determined to attend.

After curriculum night, I went home and helped put the kids to bed. Then, I cooked myself a box of macaroni and cheese, and Tom and I discussed the day. This ended up segueing into discussions of each of the kids' progress, long-term realities, medication side-effects, etc. This lead to me crying in anger and frustration and, if I'm honest, a little bit of hopelessness.

Later, in the shower, I was replaying my day. (I do all of my event processing in the shower.) I thought about every single event that had transpired, and you know what I realized? I clearly remembered a refrain that I had said under my breath over and over and over again all day long...."They're worth it."

I said it, I believed it, I knew it, and I reminded myself of it all day long without even realizing I was doing it. "They're worth it, they're worth it, they're worth it, they're worth it."

I carry that truth with me every day of my life. I don't care how much stress I have. I don't care how much juggling and multitasking and exhaustion I have some days. They are worth it.

<![CDATA[Let's Make it a Great Year!]]>Mon, 25 Aug 2014 02:51:22 GMThttp://homeiswheretheautismis.com/brandies-blog/lets-make-it-a-great-yearTomorrow is the first day of school. Parents around the country are jumping for joy, and truly, on this day, teachers and schools are probably given the appreciation they deserve. Some parents, however, worry about and dread this day. Will their child be bullied? Who will keep him or her safe? What can be done to protect their child?

If I had the answer, I'd be a famous lecturer or best-selling author, traveling world-wide. I don't. I'm just a mom. However, after reflecting on two events that have occurred in the last week, I've come up with some ideas that I think could help.

Troy is going to be baptized soon. In order to schedule the date, he and I had to attend a class together at the church. They needed to make sure that he understood what the act meant and that he was truly ready.

[Side note: If you are new here, Troy has a variety of special needs. The most notable are autism and ADHD. He does not wear a t-shirt announcing this, and I do not make it a habit of announcing it everywhere we go.]

There was a table that the children were directed to sit around. The parents sat in chairs, circling the table, so we could all listen in to the conversation. There were two adult leaders, and they took turns talking to the children about Jesus, the reason for baptism, and what would happen when they were baptized.

There were probably about twelve or thirteen children there. Troy stood out from every other child there. First, he couldn't sit still. He fidgeted and twisted around in his chair constantly. He also would play with his hands and raise his arms into the air wildly. He seemed like he was paying zero attention. Then, he began to pick his nose. Over and over again.

I was not sitting near him. There were about three parents closer to him than I. I considered getting up and walking over to him to try to get him to stop, but I feared that it would have disrupted the serious conversation at the table. So, I didn't.

However, as I watched him, I couldn't help but notice other parents watch him, too. One mother, in particular, did not even attempt to hide her disgust. She could not take her eyes off of my son. She sat up really tall in her chair, her mouth was pursed, and her eyebrows were raised. She twisted, uncomfortably, in her seat. I kept watching her, hoping she would look at me so I could give her a smile or a nod. She never did.
My son had her transfixed. She would turn her attention to her child for a moment, but then, the judgmental body language began again.

You have no idea the relief I had when the table discussion ended, and we were charged with a parent/child assignment. I sanitized Troy's hands and had a quiet discussion with him about not picking his nose. He told me that he just couldn't help it. I explained that it is gross and not polite and that he has to try not to do it. Then, we did our assignment.

As we drove home, I asked him a few questions about the things that had been discussed in the class. He was able to answer every single one. EVERY single one! When I was sure he wasn't paying attention, I was wrong.

Anyway, I was fuming about that woman and the way she had looked at my son. Really, really fuming. I told my family about it. I told my co-workers about it. I was so hurt and angry.
I realize that this is not very mature, but I'm being honest. I was judging her for judging my son.

Days passed, and the fuming lessened. It's been in the back of my head, and I've planned about three different blog posts in my head about it over the past week, but as things do, it has sort of faded.

Today, it reentered my mind.

After church, we went to a shoe store for back-to-school shoes. Laura was sitting on the floor, shoes all around her, and a mother and her adorable daughter walked in. They came toward us. The girl was around five-years-old and was disabled. She wore braces on both feet, she was grinding her teeth, and she waved her rubber toy wildly. The mom and I exchanged some pleasantries and small talk about school shoes shopping, and her daughter stood to the side, occupied with her toy. Evidently, the mother decided to try another size, and she walked to the next aisle, about three feet away.

After they walked away, Laura looked at me with a disgusted look and said, "What a silly child!" It was not the fun sort of silly that she meant--she meant it as a very negative thing. I shot her the mom-look. You know the one. It must have been pretty intense because she immediately apologized.

I did not lecture her there in the shoe store because I was hoping and praying that the mother and child did not hear her comment. I did not want to call attention to it and possibly upset them.
I saved the lecturing for the car. Trust me--she got a lecture. I hope that she will be more sensitive and polite in the future.

What do these two events have in common? And what on earth do they have
to do with bullying?

The adults are the common link in the stories. Do you remember how many children I said were at the baptism meeting? About a dozen. All were there with parents. How many parents showed absolute horror over my son's behavior? ONE. The adults sitting with him at the table didn't bat an eye. 99% of the parents in the room didn't act like they wanted to vomit. And guess how many of the children were mean to him or stared at him. Zero. Not one single child at that table, not even the ones sitting right next to him, paid him any attention.

When I thought about that today, thought about the fact that I was focusing on one person's actions and ignoring the fact that the rest of the room was treating him as he deserved--I felt a bit silly to tell you the truth. However, it also really drove home the power just one cruel person can have.

Today, in the shoe store, when my daughter was insensitive to a child with special needs, I addressed it with her.
No, I can't promise you that she will never make a flippant remark again, but I can promise that I will continue to work to make her understand how wrong it is to treat others like that.

Bullying is a difficult issue. Troy was not bullied the other day, and the little girl in the store was not bullied today. They were not treated with respect and understanding though, and I think that those are the underlying issues when it comes to bullying.

Teachers and staff at schools care for students, and they do everything in their power to keep every single student safe. However, they can't do it all.

So, I have four requests for you:

1. Talk to the kids in your life. Explain to them the importance of treating other people with kindness and compassion. Encourage them to speak up for those who are unable to stick up for themselves. Ask them not to bully.

2. Model appropriate behavior. When you witness a child in the middle of a meltdown, being pushed in a wheelchair, or even, gasp!, picking his nose in a baptism class, instead of snide remarks or rolled eyes, why don't you offer to help? You could try to distract the child, hold open a door, or offer a tissue.

3. Be willing to discipline bad behavior. If you do find out or witness your child being unkind, please, please, please do not let it go. Act on it immediately, and use it as a teaching opportunity for future behavior.

4. Help your child see beyond the bully. If your child comes home and is sad because someone has been cruel to him or her, sympathize and comfort him or her. Also-try to get the child to see beyond that cruel person. For over a week, I let the anger I had for one woman's actions blind me from the fact that there was a room full of people who were being kind.

Will these requests cure bullying? I know they won't. However, I do believe they can help.
We are all in this together, and truly, although it's cliche', it takes a village.

Have a great school year!

<![CDATA[Our Truly Unbelievable Dog Tale]]>Sun, 27 Jul 2014 05:31:09 GMThttp://homeiswheretheautismis.com/brandies-blog/our-truly-unbelievable-dog-taleIn all of my years sharing my life here and on my various social media sites, I have never lived through and shared an event that generated so much interest, so much outrage, and so much support for my family--until this bizarre story of how our dog was stolen and, miraculously, returned. The fact that so many people were so amazed and invested in it only proves how unbelievable it is. Yet every word I'm about to type is the truth.

It's complicated; all day long, I've tried to figure out a way to tell the details without boring you with minutia. However, if you know me at all, you're probably used to me including useless details in everything I discuss or write about. So....my plan is to just to start at the beginning and tell you it all. Feel free to skim to the end if you know the first part. (I'll never know.)

As I got into my car last night to leave work, my boyfriend called and said, "Henri is gone. He got out through the garage door when we got home. We ran out to get him. Troy had him for a second, but he got loose and bolted again. We quickly grabbed the leash and ran back outside, and he was gone. Brandie, it was less than 30 seconds. He completely disappeared."  He said that after calling his name and walking around a bit, he decided to drive around to look for him. They drove up and down the neighborhood streets for thirty minutes. No sight of him at all. This happened around 5:00.

Henri hasn't been with us very long, just a couple of months. I'm a horrible slacker, and although I did get him a new tag engraved, I never put it on him. (I did attempt once, but he wouldn't sit still and the key ring almost broke my nail, so I set it aside to have Tom do it for me, and I didn't follow through.) He still had his old tag on him with my friend's phone number. I immediately contacted her and let her know he had escaped, apologized for my slacking, and asked her to help connect the sure-to-be-coming Good Samaritan to me when he or she called. I also got on my Nextdoor app on my phone and posted a message, asking that if anyone found or saw him, to please let me know.

In the meantime, Tom and the kids drove around again before, eventually, giving up. When I arrived in the neighborhood after work and errands, I didn't go home. I slowly started driving the streets. As I drove, I got a Facebook message from my friend.

She said that a woman had called her to say that she had the dog.
This was around 7:45. My friend gave me the woman's name and phone number. I called her less than 30 seconds later. It rang and rang and rang and rang. There was no answer and no ability to leave a message. I attributed it to network error. I tried again. Same thing. I tried again, and it rang a couple of times but then gave me a busy signal. Network error, again, I assumed. I tried again. Busy signal.

I had been sitting in my car in front of a random person's house, making these calls, assuming I'd be given an address to go to. Sadly, I gave up and drove home. I still thought there was some technology error. I asked Tom if I could use his phone. I called the number. It rang and rang and rang and rang. No answer. I tried again--busy signal.

I began to think I had the wrong number. I asked my friend to verify it. She said it was correct. She called it herself to test it out...busy signal.

So, I looked up what that means. I had no idea before last night that a busy signal after a short ring indicated that she had blocked all of our phone numbers.

It sounded so bizarre and implausible though. Why would someone do that? Why would someone reach out to someone about a missing dog and then, seconds later, change his or her mind?! I still don't have a clue.
I told my sister. She tried it--rang the first time. Blocked on the second.

I sent her a friendly text message, suggesting that she must be having phone trouble, and asking her to contact me. I have no idea if text messages go through from blocked numbers. No response. My sister, however
, had the smart idea of texting her from my brother-in-law's phone, a phone number that hadn't been blocked yet. She pleaded with her to return the dog--she even threw in the fact that the kids have special needs. No response.

I downloaded an app to my phone to do a reverse number look-up. I paid the $3 charge for the name.  I called the non-emergency police number. I was afraid I sounded like a paranoid, insane person, but everything in my gut told me that this woman had decided to keep or sell my dog. There was no other explanation. If it had been phone problems, she could have found another phone to call from. She hadn't, and it had been several hours.
The phone screener took my name and told me that it would be a while, but a report taker would call me later.

In the meantime, I searched for the name on Facebook. Going on the information I had from the reverse number look up, my location, and the information my friend remembered from the phone call, I found a likely match.

I sent her a message. I received no response. I searched through her Facebook page and figured out who some of her family members were. I sent them messages. I hope you trust me and believe that my messages were friendly, very non-confrontational, and simply requests for help. Nobody responded, and I saw no indication that the messages had even been read.

Eventually, a police report taker called me (probably not their official title).
I gave her every single bit of information I knew. She gave me a report number, told me that the detectives really only work Monday through Friday, and they'd give me a call sometime. If I had any additional information to add, I should call back. That was that.

I felt like there was nothing more to do. I texted a friend. She and her husband both have background check apps. They both used them and sent me information for the name and phone number I gave them. They sent me the information. None of it seemed to be the right woman though.
(Today, knowing what I know now, I realize that there was one correct piece of information on it.)

I still assumed it had to be the woman on Facebook. With some coaxing, I shared her name, in the hopes that there would be someone with a friend with a mutual friend. No luck.

Eventually, I went to bed. Without Henri.

This morning, I learned that he has a microchip. My friend was able to give me the name of the company who implanted it. I called them and learned that they are only open Monday through Friday. Another closed door.

I shared the woman's name with more people. I asked for help on my author page. And then--my sister received word that she does have a friend who is a mutual friend. The woman swore it was not her. Others vouched that she would never do that. I had no choice but to believe her and try another avenue. It was another dead end.

Then, my friend, the original owner, texted me. She remembered the woman saying that the dog had jumped into her Car Name. Woah! What a clue, right?! So, I placed another call to the non-emergency police line to add it to the report. They put you at the bottom of the call list.

While waiting for the call, the kids and I got dressed, put sunscreen, hats, and sunglasses on, and water bottles in hand, set out for a door-to-door canvassing of the neighborhood. Tom told me to start across the street about three houses down. It was the last place he saw Henri.

So, the kids and I went up to the door and rang the doorbell. There was no answer, but a large dog's bark echoed behind it. I knew it was not Henri's.

We went on to the next house. A man answered. Before I could even say a word, Troy excitedly said, "Have you seen our dog? He's missing!"

I gave a friendly smile and told him that we were, in fact, looking for our dog and were wondering if he had seen a small, friendly, white dog since yesterday evening.

He said, "Yes, as a matter of fact, I did. It was last night around 5:00. My ex-wife was bringing my daughter to me, and the dog was in our yard. He jumped into her car."

My heart started racing! What are the odds? The second house we went to? The first person to open the door?

I knew I needed to walk carefully on the egg shells at my feet. "Is her name ******?" I asked. He was very obviously taken aback. "Well, it was when we were married," he said. He asked how I knew. I explained that I had looked it up.

He told me that he did not want to get involved, that this is his ex-wife. His discomfort was palpable. I smiled the entire time and used an overly friendly, sympathetic tone of voice. I explained that Henri is loved and missed, that he is important to our family, that my kids need him for therapeutic reasons, etc. His daughter stood behind him. I inquired about her, desperate to make him see me not only as a neighbor, but also a loving parent-like him.

He said he would try to call her later and ask her to bring the dog right back. She could bring it right away. I said I'd be so very appreciative of that, but I insisted that he do it right then. I pleaded, pleaded, and then pleaded for his help.
He said he wanted to make the call in private. I said, "Oh! I COMPLETELY understand that! Go inside, shut the door, and we'll just hang out here. We're in absolutely no rush!" He realized I was not giving up, and he closed the door.

A few moments later, he returned and said that she had not answered. He said he would send her a message. I asked for his name and phone number. He gave them both. I told him that I had found a woman on Facebook who claimed she was not the woman in question. I asked him to look at my phone to see if it was his ex-wife. He reluctantly took it, but he said he couldn't see well. By asking him several follow-up questions, I believed that the woman on Facebook was, in fact, innocent.

When I pressed even further for more information, he stopped me and said, "It's obvious you've done your homework." I smiled and said, "I have. This is our dog, and I want him back."

I thanked him profusely, and we went home. We never even needed to take a sip of those water bottles.

Moments after returning home, I received a phone call from an unfamiliar number. Of course, I assumed it was the woman! It was not, but it was someone even better: a person skilled in getting information that could help me. This individual was able to provide me much better information than I had before. I got the woman's new name and information on where she could be found.

I called the non-emergency police again-to give them some of the new information, the ex-husband's name, and
his phone number-and was sure to say that he told me that she had the dog.

Next, I grabbed the kids, and I went right back across the street. I told him that I wanted
to verify that the phone number I had for him was correct. I said, "Earlier, when we spoke, you mentioned that you could have her bring the dog here right away. Am I right to assume that means she lives very, very close to here? Maybe even within a minute or two?" He was very uncomfortable and said he didn't want to start trouble. I said, repeatedly, "I understand your position and situation. I am not looking for trouble. I'm not even interested in meeting or confronting her. That is not the person I am. I just want our dog back. You have the ability to help, and I am so very grateful to you for anything you can do to help us."

He said that he would keep trying to contact her. He also said that he was willing to speak to the police if necessary to tell them the information they needed. Again, I thanked him. At one point, though, I
said, "Oh, is your ex-wife's new last name *****?" His eyes about popped out of his head. He said, "Really, there's no need to even talk to me. It is clear that you know everything and have very good sources."

We went home.

And, very quickly, I received a call from a blocked number. When I answered, the woman introduced herself--she was the ex-wife.

You have no idea the passive aggressive, over the top friendly I was to the woman--at first. But her story became ridiculous, and it was obvious that every single thing she said was a lie.

Woman: I understand you tried to call me. My phone is messed up. I didn't get your calls.

Me: Really? That's awful! I know how frustrating technology can be.

Woman: Yes. It's still messed up. That's why I'm calling you from my husband's phone.
Your dog jumped into my car, but I don't have him anymore.

Me: Oh, no! Where is he?

Woman: I don't know. He jumped out of my car.

Me: He jumped OUT of your car?! Where?

Woman: The store.

Me: What store?

Woman: 7-11

Me: Which 7-11?

Woman: The one on the corner of X and Y streets.

Me: Hmmmm....
what time?

Woman: Last night.

Me: What time? I know they have security cameras. I can ask them to review them, and we can find out if he jumped into another car or ran off. If he ran, I can narrow down which neighborhood to search in.

Woman: It was late. Like after midnight.

Me: So--you're telling me that you had my dog for six or seven hours?

Woman: Yes. I wasn't trying to keep him. I tried to call.

Me: You had him for six or seven hours, never tried to call me from another phone, put him back into your car after midnight to take him to 7-11, and he jumped out?

Woman: Yes.

Me: Wow! Okay! Thank you SO much for your call! I'll go ahead and call to update the police report with the new information.

Woman: Okay.

I hung up, shaking in anger at the lies she told--but also, again, feeling like I was at a dead end. She knew that she had been found out. Who knew what her next move would be?

Just a few minutes later, I received a text message and a phone call! A Good Samaritan (Really! A good one this time!)
called the number on the tag. Henri had approached his family as they were loading themselves into a van to leave.

Guess where he lives! The exact same apartment complex as her! My theory: That vile woman knew she was caught, opened the door, and let him run!

Thank God he wasn't hit by a car or something!

Literally, two minutes later--just two minutes
later--I had Henri in my arms and peace of mind that he was safe.

His new tag with my phone number is on him. (Sorry I'm a slacker, Amanda!) Monday, I will call the microchip company to make sure that his registration is corrected as well.

What makes the story so bizarre is that had she never made that initial call, he would not be here right now. It makes no sense to me, but it got the ball rolling. Had her ex-husband not admitted to me that he knew she had the dog, the ball would, most likely, not continued to roll. And had I not received the anonymous help I did, I wouldn't have been able to, with a friendly smile on my face, convince my neighbor to convince her to do the right thing (sort of).

And that is the stranger than fiction story of how Henri came home.