Yesterday 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.
I have always processed my life events and feelings through my writing. I have always been extremely open about myself. Some call it oversharing, but I genuinely feel like it is my life’s purpose to help other people. If my writing or speaking can make a difference in someone’s life, I feel as though I have achieved what God has put me on earth to do. So, once again, I’m going to open up about a very real, very personal situation that I am trying to deal with.
I want a baby. There! I have said it! There’s the big secret that’s not at all a secret if you spend any time with me at all. I am not, at all, unlike the millions of other women around the world who feel this same desire. I know that. I’m struggling with the fact that it probably, most likely, almost definitely will not happen for me. Again, this does not make me different from a world full of women in my same shoes.
Do you believe in signs? Some call them God Winks. Some call them coincidence. Some call them nothing at all and think it’s preposterous. Well, I do believe in signs, and every sign tells me to give up this hope and desire.
But I can’t. I can’t. I can’t. I can’t. I can’t. I wish I could, but I cannot.
I have three beautiful children. I adore them and would give my last breath and then some to make them happy, to keep them safe, and to ensure they always know how much they are loved. I love them more than I could ever express. Please, believe that. This desire has nothing to do with them.
What does it have to do with? I don’t know. Biology, maybe? A dear friend was at my house about six or seven months ago, and I told her my desire. I said I felt selfish to feel this way, and she stopped me, mid-sentence, and told me that was ridiculous. It is in our DNA, in our human/animal nature to reproduce. So, now, that is my defense I use. Who knows though?
Why can’t I have a child? Let’s go through a list, shall we?
1. I’m not married. When I said this to my co-workers the other day, they looked at me as if I was insane. I have three children, after all! I adopted them, on my own, when I was not married. They couldn’t see the difference and laughed a bit. To me, it is completely different though. I’m not visiting a sperm bank, and I have not been in a relationship that led to that. So, for this, for me, marriage would be ideal.
2. My boyfriend is not interested in having more children. As we have been together for almost three years now, and the children and I are pretty fond of having him around, it is a very significant issue. Having three special needs children takes a significant amount of work—all children do, of course. However, the amount of specialists, appointments, meetings, day-to-day struggles we face are more challenging than those for typical children are. He feels like having a baby is more work than he/we can handle.
3. My biology. You would not believe the number of times I have been asked, when people learn that my children are adopted (usually with a lowered tone and a sympathetic facial expression), “Are you unable to have your own children?” The question always offends me. It implies that my children are consolation prizes to faulty reproductive organs! They are not! My reproductive organs are fully capable of every process necessary to create and nurture a new life.
That being said, I will be 35 in two months, and my sister reminds me of the various risk factors that increase if I were to become pregnant with each passing day. Here I am bragging about how functional my uterus is, but the truth is that some problems have arisen over the last year and a half that have led to repeated discussions about the possibility of a hysterectomy sooner than I ever dreamed of being possible. I will spare you from the details, but they are not issues that would prevent me from becoming pregnant, and every time a doctor brings it up, I immediately start bawling at the thought that, truly, pregnancy may not happen for me.
There are probably more than these three issues, but these are the biggies. Why don’t they convince me to give up this silly desire? I wish I knew. I wish they would. They don’t.
I’m a fairly intelligent person. I skipped second grade, after all! I was in the gifted and talented program. I graduated from TCU with two bachelor’s degrees. I taught for over ten years. I am working on having my second book published. These are not accomplishments made by someone without a brain. So, why is it so hard for me to realize just how blessed I am with what I have and quit crying over an empty womb?
My life is hectic, stressful, challenging, and unique. Logically, I should know that it would be insane to bring a new baby into this household. The man who loves my children and me and who literally does everything for us does not want another baby. Logically, I should understand his many arguments and reasoning about it and agree with him. My doctors are suggesting a hysterectomy to relieve some truly awful problems I’ve had. Logically, I should welcome that relief. Logic, logic, logic! Ugh!
I asked if you believe in signs. You see, I’ve been wondering if my recent medical woes are truly a sign that I am not supposed to get pregnant. Is the option, possibly, being removed for me to give me peace about this? I imagine some readers are rolling their eyes reading that! It is, however, a question I am asking myself.
I had another “here’s your sign!” moment the other day. At work, I have the fortune of being about eight feet from a restroom. It has its perks. Often, someone will come into my hall to use the restroom, and it’s already occupied. It is very common, therefore, to have someone plop down in my office to chat while he or she waits. This happened a few days ago, and in the conversation, my situation came up. My co-worker said, “Perhaps, this is happening for a reason. Perhaps you are, instead of touching that one life, going to touch thousands of lives. Perhaps, your writing and speaking will allow you to inspire and make a difference for so many more people. Perhaps you will foster and adopt other children. Perhaps sharing this struggle is one more way to reach other people who need you.”
Perhaps she is right. Perhaps her words were yet another sign that I need to let this go. I’m not there yet, but I’m trying.
Many years ago, when I was young and had no real responsibilities, I had quite the social life. Dinners, parties, shopping, and hanging out filled the hours when I wasn't working, sleeping, or studying. Yes, I'm talking about college.
Then, I became a high school English teacher. My free time was consumed with grading essays and working a second job to make ends meet. I barely had energy to pop a bag of popcorn for dinner, let alone reach out to my friends. On occasion, I did hang out with fellow teachers for a night of dinner and drinks. Those nights were few and far between, but when we had them, I loved spending time with people who totally got what I was going through.
Somewhere along the way, I got the crazy idea to become a foster parent. On my own. While teaching. And not just for one or two children at a time, but up to four. My house was a wreck. I was a wreck. And there was no time for socializing.
Then, I decided to adopt three children! On my own. And continue to teach. And grade papers every night. Oh, and did I mention, the kids all have special needs?
Things were tough. My life spiraled out of control, and I entered a deep depression. I was definitely not looking to spend time with anyone.
But things got better. I got better. With the help of loving, knowledgeable professionals, my kids have gotten better. I left teaching for a job that is better suited for my very unique life circumstances.
But still, something has been missing: Socialization.
With the challenges I brought on myself: a demanding job, the responsibility of taking on fostering and adopting on my own, the stress of having special needs children, I pulled away from friends. Not intentionally! It just happened. I neglected to make time for myself and to nurture those friendships.
It did not make the hard times easier. It made them so much more difficult. I felt so alone.
One of my aunts researched support groups in my area. Did I mention that she lives in another state? She took it upon herself to do what I did not do for myself. She found a support group for parents of special needs children that met once a month and had free childcare. I started going, and I loved it! I was among people who understood my struggles, and I got so much out of the meetings.
For some reason though, I stopped going. I think I may have felt like things were so much better that I didn't really need to get up early on a Saturday morning to attend the meetings.
Facebook has also helped me believe I didn't need to spend time with people in person. No, I don't get to see my friends in person, but we could connect there at least. I can celebrate their happy life events and try to comfort them in their sad times. It also has been instrumental in both giving and receiving support and advice from people who are or who have been where I am. I love Facebook!
Recently, though, I realized that social media is just not enough.
I am a very open person. I share my life with really anyone who will listen. So, at the only real places I socialize with humans face-to-face, work and family functions, everyone knows my business (more than any of them would like, I'm sure!). I have very kind people in my life, and they listen to me whine with patience and are kind enough to give me advice or to let me vent. I appreciate them. They enrich my life and have helped me through some very difficult times.
Still, I'm starting to realize that it's not enough.
I attended a conference recently about living with disabilities. There was not a whole lot of time to socialize, but I loved being in a place filled to the brim with people who can truly understand what it's like to be me. The information I received at the conference was fantastic, but the experience of soaking in the material while sitting with parents who totally relate to me was powerful.
Remember when I said I love Facebook? Here's one example why: Randomly, on a message board for buying and selling, I recently connected with another autism mom. She invited me to join a moms of special needs children's group. They were having an upcoming meeting. So, I agreed to go. I was nervous to go to a place where I knew nobody, but I went! I sat and visited with this amazing group of beautiful, strong women for a couple of hours. We shared our stories, we laughed, tears were shed, and we supported one another. Time flew, and it was time to go home.
The entire way home that night, I felt like I was floating on a cloud! I suddenly realized just how important it is spend time with people who can totally relate to us.
Tonight, at our church life group meeting, we discussed relational health and the importance of spending time with people who will listen to you, accept you, support you, and who you can do the same for. The church life group is one such group for me. They support my spiritual growth, and, hopefully, I also can support theirs. We relate to one another because we're all Christians who want to continue strengthening our relationship with Christ.
On our way home from tonight's meeting, I realized how much I have gotten out of my recent experiences spending time with people who can not just sympathize with me, but who can truly empathize with what I face day-to-day.
Reach out and connect with people! No matter your life circumstances, you are enriched by spending time with people who can relate to and empathize with you. If you like to knit, find a knitting club. If you like to garden find a gardening club. If you're a foster or adoptive parent, reach out to others in your shoes.
If you're a special needs parent, find ways to connect with other special needs parents.
I know it's hard. I know you're tired, and you don't know how you will find the time or energy, but find a way! Well-meaning friends, co-workers, and family members cannot give you the same support as those who are living or who have lived what you are going through.
This is a lesson that has, sadly, taken me over a decade to learn. I still love social media and its ability to bring people together across the miles. Technology can be a beautiful thing, but I'm learning that it cannot be the only way I connect with others. I hope that you, too, will find ways to reach out to those who share your hobbies, passions, or life circumstances. I just know you'll be glad you did!
We've had a pretty awesome week around here! Sure, there's been some rough spots, but today, I'm going to focus on our successes!
Let's start with "Project Bring Troy Back to the Joy of Reading." I had an "a-ha" moment at the beginning of the week, and I think it has made a huge difference. Troy has a very difficult time with auditory processing. The standardized testing he has undergone over the last several years always highlights this. When we give him verbal directions at home, he always struggles with them, especially if they are more than one-step. I felt like a fool when I thought about how that is hampering him during our family story time.
We frequently have story-time. We all pile on a bed, gather around, and read. It was frustrating me that when we did it, it always seemed like Troy wasn't paying attention. When I would try to engage him in a discussion about the reading, he could not. Cue "Brandie's a-ha moment." I began to think about the fact that Troy doesn't process auditory information. I brainstormed a solution...have Troy sit or lay beside me as I read so that he can see the words and read along with me.
I started the plan on Tuesday night with a new book, Mr. Popper's Penguins. He prefers non-fiction books, but I decided to see if he might engage with the story when presented in this manner. It worked! We read two to four chapters for four nights in a row, and he loved every minute. He even discussed it with me without prompting. He would brainstorm what might happen next before we even would start to read, and after we would finish, he'd close his eyes and say things like, "I'm imagining what it would be like if I had a pet penguin." This mom/English teacher's heart felt like it would burst with excitement!
I came home a bit early from work Friday with a horrendous headache that had lasted two days. I took some medicine and went to bed for a bit. I still insisted on us reading together that night anyway. I'm so glad that I did. We had another fabulous time.
Here are a few pics from Friday evening's story time:
On to Laura.....Laura has a serious behavior disorder, is extremely oppositional/defiant, and has severe ADHD. She struggles at home and at school, and we are constantly searching for ways to help her to be successful. A couple of weeks ago, I came up with a new idea. She wants her ears pierced. So, I created a sticker chart to motivate her. The rules were that she had to receive a good report from school for twenty straight school days. If she could do that, I would take her to get her ears pierced. She quickly and excitedly agreed to the challenge.
Unbeknownst to her, I actually printed five copies of this chart. I predicted that we would have to start again a few times. Well, guess who may end up with egg on her face?! Yep, me!
As of Friday, she's had 14 days in a row of good behavior!
Laura's teacher and I had had some e-mail correspondence this week related to some other matters, and I asked her about behavior issues. She said that Laura's been quite good. She has been able to remind Laura of the sticker chart when she is not complying, and Laura gets back on track. How awesome is that?!
My little Koby has also had a HUGE success this week! He came home from school with a piece of paper that had his name written on it. Near the name was a teacher's handwriting that said "No assistance." I literally squealed with excitement! My Koby wrote his name! I saw that the teacher had created some boxes to guide him as he wrote each letter. So, on the same piece of paper, I copied those boxes and asked him if he could do the same for me. He agreed, and then he did it! I truly had feared that day would never come. I am so very proud of him!
Now, the next step is for him to know that that is his name. He can identify the letters, but I don't think that he understands that those letters represent his name. Baby steps! For now, I'm celebrating the heck out of those gorgeous four letters!
In the day-to-day routines, it is easy to dwell on the struggles and failures. Trust me--I'm quite good at it. It's important to also celebrate the wonderful successes and happy moments. I feel so blessed that my three children had such wonderful moments this week! I hope you and yours had some, too!
Have a fabulous week!
Yesterday, I received an e-mail from a family member that I have not yet had the pleasure to meet. She asked me to call her because she wanted to pick my brain. So, of course, I did.
We only talked a short while, but she shared some concerns about her step-son and wanted some advice. Much of what she described mirrors my son's behaviors. I told her that in my unqualified, unprofessional opinion, it sounded very much like an ADD scenario. In the discussion, I sensed that she was feeling a bit alone in her concerns. However, her step-son's teacher is noticing his struggles and reporting them as well.
I gave her two pieces of advice: 1) Follow her gut. If she knows in her heart that something is atypical or different with her step-son, and it is truly causing her concern, she should trust that instinct. I suggested that she seek a qualified, professional opinion. I recommended that he be assessed by specifically trained and highly qualified individuals. If he tests "normal," she'll have peace of mind. If he doesn't, they can seek help. 2) Advocate for his needs. In her particular situation, she needs to advocate for him to family members and people very close to the situation to convince them to agree to seek appropriate assessments. Then, she needs to advocate for his needs in the school and community settings.
We had the conversation while I was driving home from work. We hung up just moments before I pulled into my garage.
I walked into the house, and the first thing I saw when I entered, before even putting my purse down, was a letter from the school principal. It explained that the 2nd grade classrooms were overcrowded and that a new teacher had been hired. She was requesting volunteers from each class to move into the new classroom. If enough volunteers do not come forward, a lottery system will be put in place to fill the new class roster.
Note the date--It's November. The kids have been in their classrooms for almost three months. Routines have been established. Relationships have formed. I knew that it was highly unlikely that volunteers would fill that classroom.
I thought about Troy, and I panicked. With his various special needs, especially his anxiety, social interaction struggles, and the problems he has adjusting to changes in routines, I knew it would be disastrous for him to be forced to move.
On the other hand, I felt like those were selfish thoughts and that my child should be treated like everyone else. That is what is fair, right?!
No! Fair is not always equal. I flashed back to the advice I had given literally moments before. I knew I had to take my own advice and advocate for what I believed was best for Troy.
After dinner was done and the kids were in bed, I wrote the principal an e-mail. A long e-mail. (Shocking, I know!) I revised and edited it and read it aloud several times. I wanted it to be just right. I asked her to exempt Troy from the lottery because it would be detrimental to him. I have spent many, many hours with the principal in ARD meetings and various school functions. We get along well, and I have great trust in her leadership. I know that she cares for all of the students and wants what is best for them. Still, I was scared to hit "Send." Would I upset her with my request? Would she feel like I was being a typical, overprotective, entitled parent? Again, I flashed back to the advice I had given to my family member. It didn't matter what she thought of me--I had to advocate for my son. I sent the e-mail.
In about five minutes, at 9:30 at night, the principal responded. Her simple response to my predictably lengthy, impassioned e-mail: "I agree."
Tom and I laughed at the speed and simplicity in her response to my fervent, lengthy petition. When the giggling subsided, I reflected on the situation. Knowing that Troy's needs were taken care of, I felt immense peace of mind and gratitude that he is in a school that truly nurtures and fosters his growth and success.
Eventually, my mind went back to my conversation with my relative. At the time, I believed that my advice was really not that helpful. I truly felt bad that I didn't have something better or more profound to offer her. However, it seemed like much more than a coincidence that the advice I gave her, I needed to hear just as badly. So, to her, I say, 'Thank you for helping me-without even knowing you were doing it. And thank you for loving that little boy enough to follow your gut and step up to advocate for him.'
There is a show on Netflix called Derek. Ricky Gervais writes and stars in the show about a 50-year-old retirement home worker who has a heart of gold and an unnamed disability. I think it's brilliant and am slightly obsessed with it. Anyway, there's a clip from the show that is quite profound. An administrator for the retirement home questions Derek about whether or not he has ever been tested for autism. It's a short clip--less than 30 seconds in length, and it's some of the best writing I've seen on TV. Derek's response is perfect.
His simple response drives home the point that labels are often pointless and unnecessary. Derek is a tremendous asset to the retirement home. That's ALL the guy in the suit needs to know.
Unfortunately, in the real world, labels are a necessary roadblock for people with disabilities to be able to access services that they need. It's an unpleasant fact, but a fact nonetheless.
I have three precious children. All three were in the foster care system and were my foster children before I adopted them. I had the privilege of having so many beautiful children in my home over the four years I was a foster parent, but my son Troy truly stands out as a miracle child among them.
To give you a very brief summary of his background: Troy was removed from his birth parents' home at 9 months of age. He had been neglected and exposed to drugs. He was put into a shelter for children and remained there for a month before being placed in my home at ten months. When he arrived, he did not know how to crawl, play with toys, make eye contact, interact with people, etc. His muscles were very stiff. He required physical, occupational, and speech therapies. With some basic love and attention, though, he thrived! He is a walking miracle.
He is sweet, friendly, obedient, and sensitive. He's crazy about outer space, dinosaurs, and trains. Science is his favorite subject in school, and last year, in first grade, he won the class scientist award. He is a very advanced reader, testing far above average and well into the next grade level. He's an amazing child!
For his many talents and abilities, he has just as many struggles and limitations. He definitely has ADD and a mood disorder and is medicated for both. But there was more. When I was studying autism at the University of North Texas, I would look at the checklists of "symptoms," and I kept thinking about Troy. He met almost every single characteristic. I brushed it off though. He was functioning in a normal classroom. He was clearly not at the same level as his brother Koby in terms of the disorder, so I didn't pursue it.
However, as time continued to pass, new issues continued to arise. He struggles with anxiety, and it seemed to be getting worse. Socially, he was still not making friends. We tried increasing his meds. We asked the play therapist to work with him on anxiety and self-esteem. (I was concerned his self-esteem might be causing problems with his social skills.)
The autism possibility kept gnawing at me. I did some more reading, and I could no longer deny that he truly met the criteria. I called for an ARD (Admission Review Dismissal) meeting and officially requested a full autism assessment to be done. I presented my observations, the others at the meeting gave their input, and we all agreed that there was sufficient evidence to warrant the assessment.
Weeks passed. Then, Friday afternoon, I got a phone call from a district school psychologist. She asked me some questions about Troy, and she told me about her interactions with him and input she had received from his teacher. She had reviewed his file and previous assessments and mentioned some themes and patterns in them. Finally, at the end of the discussion, she told me that at the upcoming ARD meeting, she would diagnose him as having an autism spectrum disorder. She said that she was recommending counseling to help with his anxiety and social skills. I thanked her, and we hung up.
I am now officially the mother of two boys with autism. And I am not at all sad about it.
First, both of my boys are amazing human beings. I am so proud to call them my sons. This label does not change that. Second, having the label of autism blesses them both with the opportunity to have access to services that they need. That big, scary label is actually a key that will unlock doors to help each reach his potential.
When I told my family members, nobody was surprised to hear the news. They all know Troy well. One person, however, said that hearing the news made her heart fall. I was disappointed by that response and did not understand it. I reminded her that it should not have been a surprise. She agreed. But that response really got me thinking.
The main point I'm trying to reach in this rambling blog post is that some people truly are heartbroken when they hear that someone they love has been diagnosed as having autism. Please, please understand this: You should not view an autism diagnosis as a tragedy!
I did not receive a phone call on Friday with news that Troy has an inoperable, terminal brain tumor. I received the opposite news! With this label, he has an even better opportunity at a successful, happy life! I cannot do anything to go back and change Troy's brain into a typically functioning brain. He has autism. I cannot do anything to go back and change Koby's brain into a typically functioning brain. He has autism. What I can do is use the label placed upon them to advocate for them and make sure they receive the best services available to them.
After I received the phone call, I posted the news on Facebook. I did not post it as a sad update--because, again, I am NOT sad. I immediately lost a "like" on my author page! I was shocked! All weekend long, I have wondered who I offended and why. I have no idea, and I'm sure I never will. But it did inspire me to write this lengthy blog post to explain why I do not view this label in a negative light, and I sincerely hope you do not either.
The official release date of Why Won't He Look At Me? is in mid-December. However, I was able to purchase copies of my book from the publisher early.
The shipment arrived yesterday, which was quite the surreal experience. Tom e-mailed me the picture above when the package arrived. I could feel my heart flutter and my stomach drop as I stared at the image.
I put a message on Facebook to let people know that the book is now available! The response was emotionally overwhelming. I was so touched that so many people placed orders. I was humbled at the number of people who bought several copies.
I stayed up until 12:30 a.m. to sign and package the first book orders. The climax of this long, publishing process hit today when the first several orders were mailed out.
With those first mailed packages, it is starting to sink in that there is nothing more I can do to the book. It is finished. It is out there. There is NO turning back.
I am terrified, absolutely terrified that people will hate it. When I confided my fear to some co-workers this morning, one remarked, "Haters gonna hate!" It cracked us all up. I've thought about it throughout the day though. It's true. I'm sure there will be some who will not like the book, and I can't do anything about that.
My fears and worry are not going to stop me. My hope for the book's impact is stronger, much stronger than any trepidation.
So, with a prayerful, hopeful spirit, I'm releasing the book to all of you and the children you will share it with. I hope it helps to open dialogue between children and you, their parents, grandparents, aunts, uncles, caregivers, teachers, or counselors. I hope it creates opportunities for children to ask questions. Empowered by their new-found knowledge, it is my fervent hope that this will lead to your children being accepting and kind to their friends and family who have autism.
Thank you for helping to make this dream a possibility.
In the universe's divine timing, on the very day I told my co-workers that Troy has never been invited to a classmate's birthday party, he receives a birthday invitation! I was so excited to see that superhero themed sheet of paper stuck in between all of the papers that had come home in his backpack today. I asked him if he wanted to go to the party, and he said yes. I was thrilled. I didn't have too much time to bask in my happiness and excitement, however, because I had to get to the second grade curriculum night at the school.
When I got to Troy's classroom, I took a moment to look around. I noticed a poster on the wall that listed the birthdays of all the students. I looked at October, expecting to see the child's name from the birthday invitation. It wasn't there. I started to panic. I thought back to the invitation I had left sitting on the counter. Troy's name wasn't on it anywhere! What if he hadn't been invited to this party? What if it was a mistake? What would I do? (Side note: I have a tendency to jump to the worst-case scenario.)
So, when I got home, I immediately asked Troy about the boy. I asked him how they know one another. He couldn't answer me. I asked if they had been in kindergarten or first grade together, and he said they had not. He told me that the child had given him the invitation before school in the cafeteria. I was terrified again that a mistake had been made.
So, after bedtime, I called the number on the invitation. I explained to the mom what had transpired. She laughed and said, "Let me give you some background...." She proceeded to tell me that her son had never had a birthday party with invited peers before. She said he has autism--Asperger's Syndrome--and that they were nervous about how this would even go. He gets overwhelmed by noise and groups. She had given him 25 invitations and told him to invite his classmates and any friends he wanted to. She told me that she was confident he was invited.
I could hear my voice crack as I said to her, "Let me give you a little background for Troy...." I told her that just last week I had been at an ARD meeting, where we discussed and worked out the detials to move forward in assessing him for Asperger's Syndrome. I told her about Koby, too. In our discussion, we tried to figure out how they might know one another. We figured that it must be from working with the behavior specialist on campus.
She told me that the party is the afternoon of the Autism Speaks Walk, which they are attending. She told me that we were absolutely welcome to come over after the walk and before the party for the boys to spend more time together and so Troy could get comfortable in that setting.
I was trying so very hard not to bawl the entire time. I could hear my voice crack over and over again.
I thanked her and told her I was so excited to meet her and her son, and we hung up. A few moments later, I received a text message from her. It said her son had told her "Troy is his friend and rides his [special education] bus with him." It gave me even more peace of mind and such joy that these two children have found one another. I'm hoping it's the start of a wonderful, unique relationship! :)
Today is my birthday. It has not been a terrific day. I woke up with a horrid headache, one of my uncles died this morning, a second of our four new fish died, my daughter took her pull-up off and wet the bed, I ran a red light and will now be receiving a ticket in the mail...you get the picture. Then, this afternoon, it got even worse. My office phone rang, and when I answered, I heard Koby's teacher's voice on the other line. "Koby had a rough afternoon," she said.
She went on to describe a meltdown. She could not identify the antecedent but said transitions were very difficult for him. It was long-lasting, and he knocked several things over. She said that she remembered me telling her about his meltdowns, but until today, they hadn't seen it. (Side note: His meltdowns at school last year were incredibly destructive and long-lasting.) None of the techniques that have worked for him for the last several weeks were effective. And when the day ended, and they were waiting for the bus, he shoved another child in his class-a child the teacher said he gets along with-hard and with no provocation. She said that he was very upset when he got on the bus.
Of course, I was sad to receive the call. His meltdowns are much less frequent than they were when he had no or little language. But every time there is one, I feel as if we're having a tiny setback, and it highlights the powerlessness I sometimes feel about the disorder. And in my 'woe is me' attitude I was having about my birthday, I took it even harder. I called home to let the care provider know what happened at school and to be aware that he may have a difficult afternoon and evening at home.
I got home very late from work, which made me quite sad. I walked into the living room, and the kids were all hiding in the couch cushions to jump out and yell "Surprise!" at me. Koby hid, too! There were cards and cupcakes waiting for me on the table. Tom, my boyfriend, Ms. Donna, and the kids sang to me, and we ate cupcakes. It was awesome! Ms. Donna stayed late, so Tom and I could go to dinner.
When we got home, I remembered the meltdown.
Koby's teacher sends home a daily report for him, and on the back of it, we are supposed to report on his night and return the form the next day. I asked Ms. Donna, to help me fill it out. As she rattled off the details of his day....about the books he had looked at and the difficulty he had transitioning to his speech therapist's visit, she suddenly said, "Oh! When Koby got home, I asked him, 'Were you upset at school today?' and he said, "No! I was mad!"
Four little words MADE my entire day! Not only did he respond, he responded in a meaningful way! Four little words gave me complete peace about his meltdown. Four little words made me reconsider my entire viewpoint on my day.
I did wake up with a horrible headache, but Tom brought me coffee in bed! He made my cup of coffee for the road and put it in my car. When I got to work, my co-workers had an adorable-and HUGE balloon in my office. I was treated to lunch at Fuzzy's! I have received more Facebook posts, e-mails, phone calls, and texts than I can even count, I had my sweet, hilarious children sing to me, I had a nice dinner with my boyfriend, and he surprised me with a sparkling clean bathroom!
So often, I obsess over the negative things that are happening. When I stop feeling sorry for myself, and look at all the blessings I have, the wonderful people I have in my life, and, most of all, my amazing children, I have to say that I had an amazing birthday.
I originally wrote this back in June 2011. As I read the words again in September 2013, I find that it still rings true. It may shock some people to hear a mother say this, but I do believe that autism can be beautiful. Read my words from that summer day, and I hope you will agree........
I often grieve for Koby's autism. I'm not proud to say that. Maybe I should be a super mom and never get sad about his delayed development, his trouble with socialization, or how difficult Troy and Laura sometimes find it to have a brother like him. I shouldn't get frustrated when his tantrums last
an hour and he has destroyed several books and toys....and often several times a day. But I'm not a super mom.
And I know Koby is lucky. He is not as profoundly autistic as so many others. He does make eye contact, he does hug me, he is trying to talk. So, please know I already know how blessed I am....not only because of the things Koby does and is capable of, but also because Koby is Koby.
He has the most beautiful smile I have ever seen. His laugh is seriously contagious. He finds joy in so many things, no matter how mundane. He has an amazing spirit. But now, I'm going to say something that may surprise you.
Autism can be beautiful.
I've spent the last several hours thinking about the fact that along with all of the sadness I feel about Koby's diagnosis, I also find so many opportunities
to find true beauty and blessings in my life with autism.
I spent today at my mom's house, and we took the kids to a splash park. What I witnessed was truly beautiful.
Koby sees the world in a completely different way than anyone else who was at the park today does. And I can't attribute it to his delayed development because there were younger toddlers there. I studied all the children there, and I can tell you that none, despite their smiles and laughter, had as wonderful and as beautiful experience as Koby.
He was genuinely surprised and excited every single time the water would reappear. He wasn't running and jumping in the water. He didn't try to splash
other children. He didn't do anything the other children did. Yet, he delighted in the entire experience.
I wish I could put into words what I felt watching him. I'm trying and failing miserably.
Koby stood out from every other child there. They were sure of their actions, sure of what was happening, completely aware of the other children
around them...they were having fun.
Koby was engrossed in the water, engrossed in the experience, and his eyes and smile were unlike any of the smiles of the other children. I felt so blessed to be with him, to witness his pure, innocent joy and appreciation of the moment. And I knew that without his autism, that profound connection and joyous interaction with the water would not have been there.
I feel almost blasphemous writing about autism being a blessing. But if you ever have the opportunity to spend time with my son and to witness his innocent passion and joy come out, I swear you will find it to be the most beautiful thing you have ever seen.