In my last post, I explained that after a long, uncharted journey of self-doubt and frustration, my hunch was validated that my son was “On the Spectrum” after six years from when I first knew it in my heart of hearts. He has recently been identified as having Asperger's.
Technically, Asperger's isn’t even identified as Asperger's anymore. It falls under the scope of Autism Spectrum Disorder (ASD) or just Spectrum Disorder. But for the sake of explaining specifically where Jacob falls on this endless spectrum of uniqueness, I will be referring to what he was diagnosed with as the old-school term “Asperger's” in this post, not to be disingenuous, but because it allows me to better take you on a “tour” of his mind and of my parenting journey.
We’ve all heard it said that you can’t just a book by its cover. That overused, but perfect expression applies to disabilities too. Not all disabilities are visible. In fact, whenever I think of all the “exceptionally abled” children I have taught over the years, only a handful of them have had physical disabilities, but countless have had mental hurdles. The same is true for Jacob. His are mental.
Perhaps the biggest hurdle I’ve had to jump over this year, as a parent, is how often I hear that my son “doesn’t look like he has problems.” But before I can explain to you how I combat these misunderstood observations, I invite you to travel back in time to my childhood.
Childhood Misconceptions about Mental Health
I’m a child of the 80’s and 90’s. Born in December of 1980, my mom jokes that the timing of my birth was the perfect tax write-off. (As a taxpayer, that’s my favorite joke to date!) So, I spent all my elementary years as a product of an education system where the Special Needs program was set up quite differently than it is today.
Back in the day, the students who were identified as “Special Needs” were all put together into one room with one teacher and an aide or two. That room was labeled as the Special Education Room. Whether they had Cerebral Palsy, Down's Syndrome, or cognitive delays, they were all grouped together. These students neither came into the general education classroom, nor ate lunch with the “typical” students. Everything from field trips to awards day events were done separately. The mean students in my day used words like “retarded” and “mental” to describe these Special Needs students. Even back then, it upset me how intolerant others could be.
Growing up in an era where isolation of Special Needs students was the norm, not just in my school district but in the public education system in general, contributed to the misconceptions I had about Special Needs and mental health. Mental health simply wasn’t talked about openingly. And those rare moments when it was uttered in secrecy, it was treated as a negative topic. In addition, students who had physical disabilities were the ones considered to need special services, whereas the students who had mental problems were viewed as the defiant, problematic students in the general education classroom.
Now, fast forward to decades later, as not only a determined mom, but as a loving teacher who values her students’ lives and wants them to grow beyond the realm of achieving distinguished standardized test scores, I’ve become an advocate for mental health. I care how my students feel about themselves and their lives. I want them to learn from an early age that they’re invaluable and their lives matter.
So when I first realized that my own child needed mental help, more than what Jason and I could give, it was extremely important for me to take that first step. Yet, it was painfully difficult, to go seemingly against decades of the dysfunctional norm of education that was etched into my brain. (I wrote about some of my biases in the post entitled The Importance of Mental Health.) But once I swallowed my pride and conquered these biases, I jumped on board with advocating for children such as Jacob.
Jumping onboard was the only way to go. After all, in order to be an effective classroom teacher and mom, I couldn’t very well have one foot still on the shoreline and one on the deck. Whether I liked it or not, the ship was setting sail.
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| I've become more aware of the importance of mental health, especially as it relates to my own family. |
Education Today
I’m absolutely amazed at how far public education has come! No matter what types of labels students carry, they are not excluded for the general education classroom. They get the opportunity to learn and function in a regular classroom setting.
This doesn’t mean that their disabilities should not be a factor when teachers are measuring goals and planning lessons. It just means that they receive the accommodations they need and are not isolated from the rest of their peers. For this mom, I’m thankful for that. How are students like Jacob supposed to learn whenever they are set apart from their peers and no one models the correct behavior? Modeling correct behavior and problem-solving skills is essential in order to help students like Jacob become and stay successful in education and life.
Now, I will be the first to admit that everything is not perfect in the education system for Jacob. And no, it’s not specific to his school, educators, or district. In fact, I absolutely love and respect Jacob’s educators and thoroughly enjoy the district in which he and I are part.
However, no matter which district, children with Jacob’s type of giftedness endure daily struggles that others aren’t always able to identify. Like I mentioned before, Jacob does not “look” the part of a Special Needs student.
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| Special Needs comes in many different forms. Some are unseen. |
He’s seemingly outgoing, witty, and has a great personality. But, when it comes to the classroom, Jacob struggles with everything from following directions, to movement, from recognizing social cues, to being able to finish classroom work.
For example, Jacob does not follow directions well in the classroom setting. His mind is focused on getting out what he intends to speak that he’ll talk right over his teacher and not realize it.
Or, if directions aren’t broken down into smaller steps, he gets frustrated easily and has meltdowns.
Jacob likes to wiggle and move around often. He’s always looking for a way to “get comfortable” and sitting upright at a table or desk rarely works for him. And because of his poor handwriting skills, he’s slow at finishing his work. Even though he can do advanced math in his head, he cannot physically get worksheets finished because he experiences hand cramps from poor motor skills.
Finally, it breaks my heart that Jacob does not have any friends at his school. He does have friends at our church because he has discovered those children are more tolerant and love him for who he is. And he has some friends who live in our community. But as far as school goes, he is a loner.
It’s not because Jacob doesn’t want friends. He actually prays nightly for one to come his way. It’s that Jacob has very poor social skills with peers. He dominates conversations (remember, he has to get whatever is on his mind out, even when it doesn’t pertain to the conversation) and cannot always read social cues when students are disengaged with him. When he has conflicts or disagrees with his peers, he tends to get frustrated and angry quickly. His anger then spins out of control, and before the teacher blinks, Jacob is having a meltdown. Then, it’s only a matter of time before the anger turns to sobs as he reflects on his behavior and agonizes that he’s a “bad” kid who no ones likes.
Complete and utter heartbreak.
Not just as a mom.
Not just as an educator.
But as a human being who believes in loving others and wanting them to succeed.
To see a small child fight with his inner-self, and want to change, but not know how…
To see Jacob wrestle with his decisions and wonder if things will get better.
It’s tough. So, the right diagnosis is only the beginning. I recognize that there are still hurdles to overcome concerning students like Jacob. And while there are no perfect one-size-fits-all easy solutions, there is honesty.
The honesty of identifying what it truly is that my son needs. The honesty that I will have to advocate for him for years to come. The honesty that awareness is the first step to take before a solution is successful.
Labeling
Over the past decade in my educational career, I have taught hundreds of students, and if there’s one thing I’ve noticed, it’s how quickly students seem to have a label these days. I struggle with parents who use a label as an excuse for their child’s behavior. Yet on the other hand, I recognize that to an extent, there is validation in the labels.
Perhaps the thing I struggle with the most is not wanting to come across as a hypocrite with my own child. Yes, his label explains why he is the way he is. And while a label is a starting point to get him the help he needs, I try to be extra conscious that it doesn’t cross the borderline of an excuse. Finding this balance is going to take time.
After all, parenting in general, Special Needs or not, is a learning process.
Trial and error.
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| Parenting is trial and error. |
Parenting
Have you ever had one of what Oprah deems as an “AHA” moment in your life? Well, a few short weeks ago, I had my first one from a parent’s viewpoint. And boy, was it refreshing!
I came across an article that explained every component of Asperger's, from problematic areas, to how the Autistic brain functions. Reading more information about the topic was enlightening because it answered so many questions I had about Jacob’s behaviors over the past six years.
All these years, things Jacob said and did wouldn’t make sense, and we passed them off as weird quirks, but then they started getting in the way of life...texture with food and surroundings, clothes and how they feel, poor social interactions, not picking up facial cues, focusing on random topics of discussions, hyperactivity, lost in own world and self-absorbed in conversation, etc.
After I read the article, I learned that all these things are components of having Asperger's. So, while Jacob was diagnosed with only the hyperactivity component of ADHD, it’s really part of his Spectrum Disorder. The same with his Sensory Modulation Disorder. All these different diagnoses, even the DMDD (which exhibits severe outbursts of anger) can also be typical of someone struggling with Asperger's.
Before I discovered the article, I was extremely hard on myself as a mom. Everywhere I turned, I would compare how other people’s children behaved compared to Jacob. I couldn’t figure out how my friends seemed to have such perfect kids, well-behaved in school and church.
Deep in the shattered parts of my heart, I felt like I had failed miserably as a mom. I felt like a complete loser every time I left Parent Teacher Conferences. I spent many hours in tears from not knowing what to do.
Every form of discipline imaginable didn’t seem to work on improving the situation of how Jacob acted. To make matters worse, there were comments that I would get from complete strangers in public, especially when Jacob voiced his frustration about something.
“Are you going to let him talk to you like that? I smacked my kids upside the mouth if they talked to me like that.”
“Have you tried spanking? He needs a good ol’ fashioned lickin’.”
Perhaps the most shocking one was just this week from an electrician who was at our house giving us a price quote to rewire our basement. He was leaving when he noticed Jacob was talking over me. The electrician looked at Jacob firmly in the eyes and went off on him. “If I were your mom and dad, I would use a belt. Do you know what a whoopin’ is? It’s this close (holding his fingers spread apart by an inch) to a beatin’.” I looked up to see Jacob crutching to the wall in disbelief and fear. Needless to say, we went with a different electrician, and one cheaper at that.
Even though I had tried spanking and time-out, taking away privileges, etc. all these years, nothing seemed to work consistently. By the time Jacob was in first grade, I was completely broken and at a loss. I even entered into hopeless depression from feeling like I had screwed up everything pertaining to parenting.
It has been a very long parenting journey, and one of self-discovery. These days, I choose to surround myself with a support system who prays for me and loves me instead of judging me. I’ve slowly started coming out of my parenting depression.
My church has become instrumental in this parenting process. I found that the more open and honest I am about my struggles, the more help I receive from those who make a difference in my life.
Sometimes that help comes in form of a Kleenex as I sit at a kitchen table sobbing about a stressful week. Other times, the help comes from a sweet “thinking of you” card, or a hug from a favorite friend. Smiles at church, positive comments from unexpected colleagues, and time of reflection with my pastor have all been solutions that have helped me in my parenting journey.
And even though the journey is far from over, I’ve learned to take it day by day, and to keep sailing forward. After all, God specifically picked me to be Jacob’s mom out of millions of other candidates. That must mean that I haven’t screwed up too badly...yet.
Criticism
Now, I know the words I speak will have critics. These days, there are critics no matter what one says or does. I even know people who have strong opinions about all topics. But, this is where my journey has taken me. And in the spirit of doing what’s best for my family, I have chosen to convey what God has put on my heart. Thus, I leave you with two vital words…
Awareness.
Acceptance.
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| All children deserve to be understood and accepted. |
