Category: autism

Unexpected Magic

We’ve been planning this trip ever since we knew we’d be living this close. As we entered the gates and I saw the spires of the castle, the familiar characters, the Christmas carols playing over the sound system, I was overwhelmed.

It’s been 30 years since I’ve been here.

Magic Kingdom – Holiday Season

There is magic here. Beyond excited to see the happiest place on earth through the eyes of the minions, the hubby and I vowed not to be impatient, rushed and simply go at their pace.

Don’t let the picture fool you, there were plenty of moments depicting the exact opposite😜

Lil Miss wanted desperately to ride Splash mountain. After the 50 ft drop, and being soaked, both were crying and screaming. (We will accept our Parent of the Year award shortly.)

After calming them down, reassuring them that they’d never have to ride another roller coaster, we got to see Santa! Soaking wet of course…

Fakest, tear-soaked “smiles” ever!

Isn’t it weird visiting places you experienced as a kid? Neighborhoods and houses you thought were huge seem so small viewed through adult eyes. Floods of memories came rushing back through Toad’s Wild Ride and spinning crazily on Tea Cups. Even though I am now an adult (at least most of the time), the whole place still looms large. What I didn’t expect, was the magic of the mouse to hit me quite so hard.

“I think most of all what I want Disneyland to be is a happy place…where parents and children can have fun…together.” – Walt Disney

We didn’t get to see everything, but what we did experience was awesome. Planting the seeds of magic through the Haunted Mansion and Pirates of the Caribbean, it will be fun to hear what the kids remember from this trip. I’ll remember the kindness of the cast in giving us extra services for Lil Man’s sensory and autism issues. The kiosks where we could ask for a return time for an attraction were a Godsend – and every single time they were courteous, informative and genuine.

I will also remember that my own slight disappointment at not making it to the fireworks wasn’t the end of the world. (The minions were so worn out.) The picture in my mind of our family vacation didn’t need to be replicated precisely in reality. It was wonderful – as it was. Back at the hotel, the kids zoned out and Hubby and I popped upstairs to the fitness center that overlooked the park. The fireworks lit up the sky just as I knew they would in spectacular fashion.

“Thank you,” I whispered to him, and to the unexpected magic. Standing there in our pajamas, there was no place that I would rather be.

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Learning vs Schooling

My son was picked on by one kid last year. Repeatedly. It never got physical, but it was a daily torment. People with Aspergers or HFA can come across to us neurotypicals as abrasive, headstrong, disruptive, etc. That never excuses name calling, being picked on or having teachers turn a blind eye. My son was singled out many times by the school’s PE coach, who seemingly enjoyed power struggles with a 10 year old, and failed to read and implement his 504 plan until a month before school was out for the summer. (I had submitted all documentation at the beginning of the school year when we registered.) His new class has 37 students. There is no way that even if every student had no extra needs that 1 teacher could, or should, have that many students in his or her charge. They might as well be in a college lecture hall.

My daughter complained of stomachaches multiple times a week last year. There was some social drama – what we deem “normal” and marvel at how young it seems to start. It got bad enough last year, we sought counseling. There’s popularity, boys and multiplication tables, but there are also teachers who are tired. Teachers who perhaps would be better suited for other vocations. My daughter overheard her teacher swear in frustration. She shared with me that she would get a lump in her throat when called on in class because if she gets the answer wrong, the teacher will humiliate her in front of her peers. A student should be allowed to make mistakes – that’s how we learn. She cried every week not wanting to go to school. This from a girl who has loved school up until this year.

When cleaning out the daily lunch boxes, I asked the kids, “Why didn’t you eat your lunch today?” I was often met with the same response – no time. They cut down the lunch to 20 minutes. Line up, sit down, be quiet, stop talking, sit still. Get up. Line up. Walk to class. My mom made the comment that it’s like they just want a class of robots. It sure feels that way.

There are benefits to public schooling, when it is done right. I also get that as a parent, my involvement is key to a school’s success. That said, I fear that schools that get it are few and far between. We were fortunate to have been a part of such a school in Texas, but not all the schools even in that district were so fortunate. I didn’t necessarily love all aspects or subjects in school, but overall, I liked it. (Okay, I loved school supplies. And the smell of books. And paper. And the crisp way a freshly sharpened pencil writes.) When I overheard my kids state they hated school, my heart broke. I asked them if they were at their old school, would they still hate it? It was an attempt to see if the work itself was challenging or if it was the social/teacher/atmosphere they were dealing with that caused such a visceral reaction. It was definitely the latter. It was as if their love of actual learning was being eroded away.

Homeschooling was something that we agreed was never off the table. It’s been something we’ve been open to, if needed. My sister has homeschooled my nieces off and on through their school years. They have been involved in all kinds of extra curricular activities and are well-rounded, social, and bright, critical thinkers – and isn’t that what we want? A population that thinks critically? Adults who can function, are polite, and well-educated? There is a clear difference between schooling and learning.

We’ve decided to homeschool our children this year. We have a curriculum that is well-laid out and meets all state requirements. It will allow for working ahead on subjects in which they excel, as well as the time and flexibility for areas in need of work. The idea of going completely against the grain feels scary – but in a really exciting way.

Kids learn more from our actions than what we say. I hope they will learn through this process not only the things required from an academic perspective, but also how to do what’s right for them. I pray they have the guts to go against what everyone else does, or what they think they “should” do when needed. I hope to instill in them that different isn’t wrong – just different – and different can be wonderfully freeing.

Back Then

I remember feeling amazed and nervously excited when I descended the stairs in our tiny 2-bedroom apartment to tell my husband of 8 years I was pregnant. He looked up at me, “Really?!” Nodding, I confirmed what we’d been planning for about a year. We were thrilled.

I devoured all the books, the guided meditations that were supposed to help with birth, ate all the ginger things and was sad when I had to quit my job because of severe morning all-day-and-night sickness. Eventually I felt better with the aid of medication and tracked all the changes in my body and read details about the growing baby.

Over a decade ago, Jenny McCarthy could be seen all over spouting her doctor’s erroneous findings that vaccines cause autism. Back then, this was my worst fear; (and likely a fear of many parents-to-be) that something could be “wrong” with the life growing inside of me. I remember telling my friend at the time, “I pray that nothing like that happens to my baby.”

Jacob was born 4 days after our due date and was a hefty 9lb 11oz. He hit all the physical developmental milestones, had the most adorable smile, and was the center of our world. I struggled with breastfeeding and postpartum depression, but felt our “new normal” of life with a baby around 3-5 months.

As he grew, we noticed little things that, at the time, gave us no cause for concern. Things like his inability to be laid down on his back while asleep. He would startle awake and scream. We carried him and let him fall asleep in our Ergo baby carrier. We co-slept because as long as we were all getting sleep, the location didn’t really matter to us. He nursed and didn’t desire solid foods. Getting messy and exploring foods with fingers seemed not to be his thing but for just a handful of times. He wasn’t verbal until almost 3 after speech therapy interventions. We had taught him sign language and had developed our own unique way of communicating. We discovered his right eye blindness as we prepared for preschool and kindergarten. Jacob struggled at the dentist and doctor visits. We prepped him well in advance for changes in routine, as well as transitions from one activity to another. We adapted. We learned. We read and researched and asked questions.

Jacob was evaluated at 2, 5, and diagnosed with ADHD-inattattentive type (with Autism Spectrum Discorder verbiage in the paperwork, but not formally ASD diagnosed) at 8, and now at 10 we are looking forward to another comprehensive evaluation. His IQ is 133. He’s crazy smart, and loves to learn about things that interest him. He as a 504 plan in place at school for accommodations as needed. We are working with an occupational therapist who has taught us both.

Sitting in the car before an appointment, we were chatting before heading into “food school”.

“Mom. I want to work at Microsoft,” Jacob told me, veering off of whatever topic we were currently discussing.

“Really? Why is that?” I asked.

“Bill Gates is thought to be on the spectrum. Maybe I could work with him and help other people like us. Plus, I like computers.”

“I think you would be great at that.”

As he walked into the appointment it hit me how far we’ve traveled on this autism journey. How scared I was for him, and frustrated at times because life with someone on the spectrum isn’t always easy. I struggled (and sometimes still do) when people are judgmental or unkind, knowingly or not. He makes me laugh out loud at his literal way of thinking, his interpretations of figures of speech and his other little quirks. I love the protectiveness he feels for his sister. He has taught me compassion, patience, and to slow down and see things from another perspective, that different isn’t wrong, it’s just different.

Back then, I just didn’t know.

I didn’t know how much I could love another human. I didn’t know that autism spectrum disorder really sucks as a label because it doesn’t feel like “disorder”. I stopped asking the futile “Why?” and “What is the cause?” questions years ago. It doesn’t do any good and there are no satisfying answers. It just is. I didn’t know that I would one day be thankful for resources and knowledge and tools to help him navigate and understand the world.

I never thought that I would be thankful for autism.

That was then.


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