"What is autism?"
Autism is a spectrum. It varies from child to child, adult to adult. It includes deficiencies/complications in social skills, verbal and nonverbal communication, and repetitive behaviors. It could also include medical and mental complications like seizure disorders, anxieties, gastrointestinal disorders, sensitivies, etc.
As of May 2013, almost to the day of my son's birth, the APA changed the trajectory of the autism diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, (DSM). No longer are there diagnoses of "classic autism," Asperger's, and PDD-NOS. You've probably heard those terms before; however, now, everything falls under the umbrella of Autism Spectrum Disorder.
Why the change, though?
- More accurate diagnosis
- Identification of symptoms that may warrant treatment or support services
- Assessment of severity level
Many on Autism Avenue have mixed feelings about the newer change that lumps everyone together. In fact, it seems like there's a huge divide between severity levels, and not everyone believes these kiddos should be considered the same diagnostically. The good thing about the DSM is that it is an evolving book that develops just like science and the human mind. We could very well see another change in diagnoses in the near future.
"So what kind of autism does your son have?"
When I first began my journey with autism when Isaac was 2, I remember venting on a message board about my fears and suspicions that something wasn't right. I wanted to hear someone say, "Yep. It sounds like autism to me!" or "Nope, maybe it's..." However, some autism moms on the board ripped my questions to shreds and condemned me for all I had said. I've reached out to some moms since then who are more vocal about their children and some who aren't. However, I can read all the books and blogs, research all day long until I'm cross-eyed, and meet new autism mothers, but that still doesn't mean it's not a lonely place for us. All of our kids are different, and we can't expect the same things out of every single one of them. They all have different strengths and weaknesses, sensitivities and triggers. I truly believe finding the right program and right people are absolutely imperative.
"So are you 'Light it up blue' or #Redinstead?"
You didn't have to look too far during Autism Awareness Month to see that there is a great argument going on in the autiverse. On one side, we see people celebrating autism and the neurodiversity movement. These people use the #redinstead hashtag and become increasingly disgruntled if they hear anything about curing autism. Most of these folks celebrate their (or their child's) quirks and different abilities. They don't want to be "cured" because it's who they are. Some people, however, would love to see their babies thriving and cured from the "issues" autism has brought into the equation. Some of us really don't know where to stand.
Most days, I celebrate my son and the fact that he could back up a zero-turn lawn mower into a barn at age 2.5. He knew every shape, color, number, and letter just after his second birthday. I love how he can memorize just about anything, and I love how quick he is to forgive. His big heart makes me feel like superwoman sometimes. But some days, I would really love for his obsessions to cease. I would like for him to lose his fears of certain things...the way he melts down when he is stressed and overstimulated...the way he struggles to have a conversation with people...even for just a month or so. But this argument is out there. For me, I have to lean on God and depend on his understanding and His plans for us; otherwise, I would never be able to make sense of all of this. I have to believe in my heart that every thing God has allowed us to walk through is for a greater purpose: to glorfiy God.
"I just don't see it. He doesn't look autistic."
I've been told this before, and seriously, I don't know how to take it. Sometimes it makes me feel good. The therapy is working. Maybe all the time at church has helped him be more comfortable in crowds and around loud music. Maybe all the love from family has helped him feel more comfortable in his skin. Maybe school is desensitizing him to all of his anxieties and giving him more confidence. But sometimes, it makes me uncomfortable. What if people think this is all a joke and that he's just a discipline problem? What if people think we are bad parents? What if people give up on him? What if people don't think he deserves his services?
Looks can be deceiving. There aren't many disabilities out there where everyone has a different opinion on what caused it, whose fault it is, why it's here, and how we're going to "fix" it. It can be so overwhelming and exhausting at times. Some days are good and some days aren't so good. You might see us on one of those days and set your opinions on what you saw. These kids' abilities can't be based on first impressions, though. It's going to take time to get to know who they are and how they learn. I promise that it's worth it.
"You shouldn't have vaccinated him."
This is a hot topic in the media even more than ever at this point. With all the latest measles outbreaks, it's hard to ignore the articles floating around on social media and the nightly news. If one asks autism parents about this topic, it's usually a pretty touchy subject. I've gone back and forth on it, wondering...just wondering what would've happened had I forgone his vaccinations. I battled with so much guilt for a long time over this because I needed something to blame. Over time, I've talked with those who saw a visible change in their child after vaccines. I've talked with some who said it was the amount at one time that set the child's immune system into overdrive, affecting him neurologically. I've talked with some who claim assortative mating and genes have everything to do with everything. I've talked with some who refuse to comment, those who believe God designed their children like that in the womb, and some who believe autism is nothing compared to death by a disease that should've been eradicated but has unabashedly emerged into our population once again.
Sometimes, I feel that Isaac is that 1 in 59...almost in a sacrificial way, so to speak. I'd like to think of God and Isaac having a conversation before he came into our lives about Isaac being used in a unique way to bring glory to Him. I like to think of those things sometimes because it does away with the blame and postures my thoughts and fears on the one who keeps the Earth rotating in the universe. Are vaccines a government conspiracy? I don't know. We might not ever know exactly what causes autism, but I believe there is a reason behind it and a place in this world for our kids.
"Have you tried...?"
Autism is out there for people to comment about all the time, and even though it makes me nervous and edgy, I know that for awareness to take place, people have to know our stories, the good and the bad, and they have to know that we are trying. I know sometimes that it looks like we might not be. Sometimes it looks like we're treading water and that we're going no where. I promise we are, though. Things just look different for us. Sometimes it's one step forward, two steps back. Sometimes it's two steps back and one giant leap forward. You never know what's going to happen developmentally with our kids; it has been this way since birth.
If you suggest something, and we don't try it, we don't mean any harm by it. Most of the time, making suggestions shows us that you care, and we're so thankful you do. We just want you to know, however, that most of us have once existed off the temporary hope from every new therapy, diet miracle, book that we read, and every suggestion only to find that they didn't work. We also can get pretty sensitive when it seems people are looking down on how we parent our special kids. We try so hard. We really do.
Please be patient with us and our kids. Every day is different.
"What's your story?"
April of last year (when Isaac was almost 5) is when my son actually got diagnosed with ASD, but the journey started around 18 months of age. Isaac wasn't talking or mimicking like he should. It seemed like he was always reaching his milestones after his peers even though they were still technically considered within range. At 18 months, however, we discovered his first repetitive movement. He would walk by things and look at them out of the corner of his eyes. We had no idea what he was doing at first and thought it was so adorable. It never stopped, though. That's when I really started worrying. Things started adding up and making more sense. However, I was still as confused as ever. Definitely a paradox.
At two when the language still wasn't there, we signed him up with Early Intervention,and I'm so thankful we did. I can't stress enough the importance of getting help early on. There is no shame in this. So many parents get worked up over getting their children extra help, but would we shun getting a math tutor for a teenager struggling in math? Absolutely not. It's the same premise. Having that system in place during the long diagnosis season kept us focused on seeing small improvements even when we didn't know what was going on. This kept my heart and mind focused on hope, and these people became more than valuable to us; they became vital--part and parcel of our village.
It has been a roller coaster of therapies and evaluations since. After waiting months and months for an appointment, the first institution we went to told us Isaac didn't have autism and gave us some other diagnoses. They said he would need occupational therapy and physical therapy along with speech obviously...that he had a global developmental delay and a language disorder. I knew some of this sounded right and some of it didn't. I knew I needed more opinions to get all of this straight, and I'm glad I did.
It took two more years to figure out the truth, but by this time, my heart had settled into reality and I knew. At the beginning, though, I was a mess. That time in 2015 when I Googled "Toddler looking at things out of the corner of his eye" and every result came back with "Autism" in the headline, I lost control of myself for about two weeks. I didn't eat. I didn't sleep. I knew in my heart that at that point, we were forever on a different journey, even if it was just a Google search. Can you believe during this time was when we decided on having another child? I knew that letting the Enemy get to me wasn't going to help make this a reality. God knew, though. God knew the whole time. But I'll save more about Caroline for later.
Getting an appointment can take around a year at some organizations, but Mitchell's Place opened us up a spot that would only take a couple months, and the day Heath and I were set to talk with the psychologist (miraculously on April 2, 2018, Autism Awareness Day,) I knew what the result would be. I knew the timing wasn't a coincidence. In my planner, the month of April's theme was Count It All Joy, and the week of his evaluation's memory verse was James 1:2-4. Definitely not a conincidence.
God was definitely watching over us during that time, and he was there when he was born. He is with us today, and he will be with us tomorrow.
Are you seeing God working through your situations? I would love to hear your stories.
Thank you, God, for your little signs. If we're not watching for them, we might not see them. Please help us always open our my eyes to notice you, Lord.
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