Earlier 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.
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.
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!
I have started and stopped this blog entry about six times over the last week. I know that what I write may upset people, and fear of ridicule and judgment has plagued me with an inability to finish writing this. However, I promised to be more open
on this blog, so I'm going for it. I devote my first 2014 entry to the topic of medication. It is a topic that ruffles feathers and causes people to judge and condemn on either side of the issue. My children take medications and are under the care of very skilled and caring psychiatrists at a local children's hospital. I did not make the decision to medicate them lightly. I do not keep them on medication without great thought. I trust my instincts. I trust their doctors. I do what I feel is best for my children. I am a member of a Facebook autism group. I won't name it specifically. I am seriously considering leaving it though. The judgment and vitriol is ridiculous. Instead of a place where parents can go for help and support, it seems to be a place for other parents to bash, criticize, and judge. The other day, they posted an article from several years ago about a little boy who had been given psychiatric medications and then committed suicide. He was very young, seven, I believe. It is sad, of course. However, the comments that people wrote were horribly insensitive and judgmental to any parent who has decided that medication is the best choice for his or her child. Flippant remarks insinuated that parents medicate their kids because they are lazy and they don't want to deal with challenging behaviors. There was a lot of soap boxing going on from people acting as if parents who choose to medicate their children are not good parents. It was disgusting. Are these news stories important? Of course! Is discussion worthwhile? Without a doubt. However, it is also important for parents who are faced with the decision of whether or not to give medications to their children to not be ridiculed and looked down upon. Should medication be the first option? Not in my opinion. If and when the time comes, and all parties involved decide the pros outweigh the cons, people outside of the situation need to have a bit more compassion and understanding.
Two of my children suffer from intense insomnia. Troy, who is now seven, would, as a toddler, stay up all night, every night and would scream and scream and scream. It was unbearable. Nothing I did worked. I was up all night with him every night and trying to maintain a full-time job and care for three babies at the same time. I was miserable. My mother came to stay, sure she could help. She quickly saw the problem was serious. Melatonin didn't work. Every single bit of advice I came by was tried and failed. It was awful. If he did go to sleep, it was short lived. He'd quickly awake and would scream some more. It was not night terrors. It was much, much worse. He had a sleep study. The report said: "Insomnia due to mental illness." And so, he was given Clonidine. And he slept! He was, soon after, diagnosed with a mood disorder and anxiety and was prescribed Risperdal and Zoloft. These drugs, especially the Risperdal, completely transformed him! I will never forget the feeling of gratitude I had as I saw how much Risperdal helped my son function. I called it liquid gold! Years later, he was diagnosed with ADHD and was prescribed Intuniv and Metadate. He was better able to follow directions and focus in school. That's a lot of medication for a little body! Do not ever think that I don't know that. Don't ever, not even for a moment, think that I don't know about possible side effects and that I don't constantly weigh the pros and cons of every thing I give him. The doctors we see are incredibly conservative in the dosages they prescribe. Our appointments are lengthy (45 minutes minimum per child) and decisions are made after thoughtful deliberation. These medications are allowing him to function in ways that he would not otherwise be able to. They give him the best opportunity for success. We do not, as I've seen many critics suggest, rely on medication only. Our house is run on a strict routine, and he has consistency in every aspect of his life. He goes to play therapy and is seeing a special education counselor. A behavior specialist is involved at school. He has an IEP at school, and an aide works with him in the classroom. In the past, MHMR worked with him at home and school. Medication is one component of his care, but not the only one. Koby, for a time, also suffered from insomnia that melatonin could not touch. The psychiatrist put him on Clonidine as well. It seemed to affect him much more profoundly than Troy. When it came time to refill the prescription, I had a hard time getting in touch with the pediatrician. During the two or three day period, I gave him melatonin only, and he slept fine. So, guess what I did...I took him off of the Clonidine! He has been off of it for over two years. I am not looking to medicate my children. That being said, Koby has had many problems with his behavior. Inability to communicate for so long led to him having meltdowns constantly. We dealt with it though. He's always been so petite and (seemingly) fragile. I didn't want to medicate him at all. When he started to talk over a year ago, the meltdowns decreased. Aggression really began though. When he started kindergarten, he began having several hour-long meltdowns a day. He was destroying his classroom. He attacked the other children, the teacher, and the aides. Every single day. He drew blood from another child. Every attempt his skilled and experienced teacher made to diminish the trouble behavior failed. He is in a structured, self-contained classroom with only about six students, a teacher, and three aides. Yet, he still could not be controlled. Several behavior specialists were brought in to assess the situation and offer ideas. Every attempt that was made to improve the predicament failed. Finally, I had to make the decision that I needed to consult a doctor. As a mother, I would not like to send my children to school, knowing that another child was attacking him or her. I felt a responsibility to those other children to act. So, the psychiatrist decided to start him on Abilify. She put him on the smallest dose. We began it on the weekend, and at the end of day one, we saw a huge improvement in his behavior and demeanor at home,-but he also seemed a bit too sedate. So we cut the smallest dose in half. And guess what! It has been a miracle worker! He has not had a single aggressive episode at school, has followed his work schedule there and been more willing to comply, he is much less likely to be agitated, and (I don't know how this is connected, but I swear it is) he suddenly, overnight, was potty trained! Laura's medications have been just as necessary and just as positively life-changing. Hers are still in a state of flux because her behaviors are much, much more challenging than her brothers'. I'm sure I'll write more about her in the future. All I ask is that if you are a parent who has decided that come hell or high water you are NOT going to medicate your child, and you meet someone who has decided that medication is necessary for his or her child, do not vilify that parent. If you are a parent who DOES medicate your child, and another parent with a child like yours has decided not to use medication, be understanding! Every parent knows that raising children is difficult. Constantly questioning whether you're doing the right thing is part of what you sign up for when you take on the role. So, as fellow parents, heck, as fellow-human beings, we owe it to one another to be a bit more understanding and supportive of the tough decisions that are made in the attempt to give our children the best chance at success they can get.
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.
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.