It’s Autism

It took the neurologist all of five minutes to diagnose my daughter with what I had spent three years wondering about. She is the one in every 58 kids (or whatever the statistic is today) with autism. I was ready for it, but yet not. I kind of knew it, but sort of didn’t. This diagnosis changes nothing and everything.

Society is not made for people with autism or any differences for that matter. It took me four days after the diagnosis before I even cried about it, and it’s taken me a couple weeks to sit down and write about it. The bottom line is, things will be harder for my daughter, and as her parent who wants the best for her, that is a hard pill to swallow.

As I have struggled through processing my feelings about her official diagnosis, I have been reminded over and over that society isn’t ready to accept people who are different.

I heard a mom complaining that there were too many kids with autism in her daughter’s summer camp.

I read an email that had been written to the mom of a child with autism in which the author wrote that it wasn’t her problem that she (the mom of the child with autism) had reproduced a defective child.

And when I told a very close relative about my daughter’s diagnosis, she responded by saying she didn’t agree with labels. Autism does not make someone “less than” or defective, nor is it a label. But how can I convince someone who otherwise seems to have already made her mind up?

I have also read things written by others in which they wax poetic about autism – how it’s a “superpower”. People use words like “beautiful” to describe it. It’s not those things either.

Autism is defined as a neurodevelopmental disorder characterized by an impaired ability to form social connections and to communicate with others. It’s a spectrum disorder.

The mom with a daughter in an inclusive camp, the author of the email, and my relative are all stories that drive the point home that things will be harder for my daughter, as someone with autism. Other people’s antiquated knowledge and lack of compassion contribute to the stigma that surrounds the diagnosis. These things are what keep me up at night, not autism.

At one point in our assessment with the neurologist he looked at me and said, “You knew. You knew she had autism, right?” I said, “Well sort of.” The truth is I didn’t know. I wondered, sure, but always hoped it was something that we could get past. Her developmental delays were less significant, and she crushed her IEP goals last year. Cognitively, she is functioning on par with her peers and with some things like colors and numbers, she has scored in higher ranges for her age.

But there is no denying she goes into her own world, and she does it often. She disappears into conversations with herself often with a stick in one hand, during which time her speech becomes rhythmic, almost musical. She goes there and stays there while we walk through the zoo or along a nature trail. She is happy there, and those are the times when I want to reach into her world and connect with her, but I can’t. I feel lost in those moments. I hoped that one day I wouldn’t always feel that disconnect from her world, but I likely always will.

Autism is not an excuse – the neurologist reiterated this point several times during our discussion. He explained that she has the ability to learn anything and autism cannot be an excuse for her to behave poorly or not do things when she is cognitively perfectly able to do them. She is capable and has full potential, he said. He said socially she is like an anthropologist on Mars and every day is new to her with regard to her social interactions. But, she is capable of learning how to navigate these situations. It will take time. It will not be easy. But autism is not an excuse.

My daughter is and always will be much more than a diagnosis, but autism is a part of her story. It is a part of who she is and who she will be and it is why we will continue to go to therapies, act out social scenarios, and talk about emotions. It means we will always have an IEP in school. It means she will see a neurologist throughout her childhood. It means she will meet more therapists and learn things differently than her peers. It will be threaded into the background of so many of her life experiences. She will grow up and become whatever she wants to be and she will always have me on the sidelines cheering her on.

As for me? I am an emotional person, but I usually manage to maintain a stoic public presence thanks in part to my job, which has provided me plenty of opportunity to be expressionless in the face of public criticism. But when it comes to my daughter? All bets are off. I am a mess of emotions and I will fight tooth and nail for her (but mostly with words and decisions). I will fight for inclusiveness because I believed in it long before I had a daughter that would be in need of it. I will cry a lot. I will cry when she struggles, when I feel defeated and at a loss as to how to help her through whatever challenge she faces. I will keep celebrating her firsts, her accomplishments, and all her creativity.

I will smile on the good days and dig deep for more patience on the not-so-good days. I will hug her when she lets me, hold her when she needs me to, and I will make sure she knows that I believe in her. Mostly, I will always wish for a glimpse at the world through her eyes so that I could understand her experience and the ways in which she sees the world.

Just Imagine

As the parent of a child with developmental delays, I often get anxiety over every missed milestone. It started early: When will my daughter roll over? When will she sit up? And it continues today. I go down the rabbit hole of Google searches and lose sleep over each missed milestone, searching for solutions and comfort. When she didn’t engage in imaginative play by the age of 2, my response was no different.

I saw that my fellow moms of young toddlers were hiding holiday presents so their little ones wouldn’t find them. Mine were sitting on the floor in the hallway, unwrapped, and my 2 year old would pass by them without a second glance. Birthday presents from her first year were still sealed in boxes because she had no interest in toys.

Her therapists urged me to play with her and help develop her imagination. I did. And guys, I am not that great at this stuff, but I cooked pretend food like it was my job, and I called on my childhood ventriloquism skills to give voices to all the dolls and stuffed animals my daughter had. Despite my impressive ventriloquism skills, she never engaged and seemed unimpressed by my efforts, but I persisted. One day, she picked up the toy phone out of her kitchen set and held it to her ear. I am not sure if anyone has ever been praised so enthusiastically for holding a toy phone to their ear, but my daughter got the equivalent of a standing ovation at the Oscars.

By the age of three, typical children will be fully engaged in imaginative play and creating in-depth stories for their toys. They play more independently and even mix toy sets together, for example, Spider-man may come over for tea with Anna and Kristoff. At three, my daughter was doing some imitation and would copy the scenes I had created, but she was more interested in lining up the toys and reciting their names, rather than actually playing with them.

My daughter’s lack of imaginative play became more apparent at school, and I was genuinely worried. She knows who the Paw Patrol characters are because of her peers, but we have never watched a single episode. That’s right – I have a 3.5 year old and we have never watched a single episode of Paw Patrol! No need to be jealous though, because what we do watch is the same episodes of Barney, over and over and over and over and…well, you get the point.

The best part about working so hard with your child to reach milestones is that when they do reach them, it’s an incredible victory. It was only three months ago I took my daughter on a playdate to the Playmobil Funpark where she mostly marched around singing to a piece of plastic fence from the farm table. When we returned to the Playmobil Funpark this weekend, she was engaging in imaginative play with the toys around us. In April, she was singing and dancing and trying to put herself in places she shouldn’t have been. This weekend, she was actively creating scenes with the toys and pretend people. Her imagination was on full display and although it may have arrived late, it was beautiful to witness. The Playmobil place is a place I can’t imagine you’d see many moms tearing up in (unless they’re at the cash register), but if you do see a mom tearing up there, maybe this is why.

Check out some of our magical moments here:

Some tips to help develop your child’s imagination:

  • Find toys that replicate the real thing. My daughter started pretending to cook with her Melissa & Doug silverware and utensils. I found an old flip-phone (I am aging myself here) laying around, and my daughter loves to play with it; the same goes for old wallets and bags.
  • Use toys your child shows an interest in. My daughter loved Matchbox cars, so we started with simple races. Now she creates voices for the cars and they do more than just race across the kitchen tile.
  • Keep it simple. Start with just pretending to pour pretend water or eat pretend cookies. If your child likes to push buttons and make things work, employ toys that do just that. Slowly introduce items that may not be realistic like a unicorn eating a pretend cupcake.
  • Play. Play. Play. Get on the floor and play with your child, even if they don’t seem to show any interest. Keep playing. Stay imaginative and always encourage them. When you thought your child was going to pretend to eat the plastic pizza, but instead uses it as a steering wheel and starts singing “The Wheels on the Bus”, get on the bus and go for that ride with them.

 

Now serving fresh imaginations!

Concealing an Invisible Disorder

Someone recently asked me if I ever try to conceal my daughter’s sensory issues or delays. The simple answer is: no. That said, I don’t make announcements about it either. Her disabilities are invisible. When you look at my daughter, she looks like a typical three year old. She may even smile at you, and if she really likes you, she might call you “Poopie” as if you are old friends. Trust me, it’s a term of endearment.

There are days where we go in and out of stores, museums, and parks and not a single person would ever know that my daughter is delayed or has sensory processing disorder. They may see her singing to a stick and think she is just a quirky three year old, not realizing this is something she obsesses over and has been doing for over a year. They would never guess that at one point in her life, we wondered if she would ever speak. There are days when we are out and stop to have a snack, and my daughter starts rocking against a bench and singing to herself. Passers-by go from smiling to looks of confusion: Why is my daughter rocking? Why am I not stopping her?

There are days where we go through an entire zoo while she sings to a bent stick in her right hand and marches the entire time. Some days, there is no concealing that she does things that most typical three year olds don’t. Other days, her “quirks” are easily dismissed as normal toddler behavior.

My daughter is nearing the 4 year mark, so up to this point there has been no need nor perceived pressure to try and conceal her disorder. If she needs to rock, I let her. If she wants to bounce, she bounces. I have never discouraged her from doing what she needs to do to self-regulate. I have worked with her to make sure she engages in these activities safely, but beyond that, she does what she needs to do and I don’t try to stop her. She has been at the same daycare for over 3 years now, and the teachers and other children don’t think twice when she rocks, bounces, or even bangs her head on her cot at naptime. The headbanging is gentle and rhythmic and was evaluated by her behavior therapist who felt it was safe and should not be discouraged.

Although I don’t hide my daughter’s delays or sensory disorder to people we don’t know, I don’t go around announcing them either. So, who do I tell? I make sure all her doctors and therapists know what is happening with her. I answer the questionnaires about what she can and can’t do with honesty, even when it hurts to know she isn’t where most kids her age are with certain skills. When I enroll her in extracurricular activities I speak with coaches and instructors ahead of time to see if it will be a good fit. I keep family and friends apprised of her regressions as well as the progress she makes. I’m not afraid to brag when she accomplishes something, even if it is something most kids her age have been doing for a year.

As she gets older, her quirks and behaviors might be less accepted. Will I encourage her or attempt to persuade her to do these activities privately? No. If she chose to do them privately, will I discourage her? No. It is probably easier for me to decide on these things now when we aren’t entrenched in the emotions of being bullied or made fun of at school, but my goal is to give her the confidence now to make these decisions for herself in the future, knowing that she will always have my support.

 

A Cautious Mom Raising a Fearless Child

Growing up, I was a cautious kid. I had fears of pretty much everything:

  • I ran out of the movie theatre when E.T. appeared on screen;
  • I bolted out the back door of our house when my mom had a friend dress up as Santa and “Ho, ho, ho!” his way through the front door;
  • After I was informed that the tooth fairy would be visiting me while I slept, I set a trap for her, because the idea of some tiny flying woman slipping under my pillow to take my teeth was jarring, to say the least. I strategically placed fishing line across the doorway in the hopes that her wings would get caught. “What did she even need all those teeth for?:”
  • I never liked to swing too high on the swings or go down steep slides;
  • No one paid more attention to the “Stop, Drop, and Roll” fire safety presentations at school. I even practiced at home, on my own.

The only reason I was ever invited to go to carnivals with friends was so I could hold everyone’s personal items while they rode the roller coasters. I was perfectly content playing the role of the pack mule for my friends. I ran from snakes, lizards, and bugs like it was my job (confession: still do). By age 12, I felt like I could handle the airplane emergency exit plans better than the adults who were sitting there and remember thinking, “Oh my gosh, they are sleeping!”, feeling horrified by their lack of concern for the safety of their fellow airplane passengers.

As an adult, things haven’t changed too much when it comes to my concern for safety, except I do laugh a little during the airplane safety presentations, when it is suggested that if my flotation vest doesn’t inflate, I can use the straw like attachment to blow it up myself, you know… after surviving a crash into the water? Sounds legit. I am a Certified Playground Safety Inspector (CPSI). Yeah, that’s right – it’s a real thing and I am a playground safety vigilante, always looking for a protrusion or potential entrapment situation. I install extra fire and carbon dioxide detectors at home – “just in case”. I keep a first aid kit in my backpack. I am “next level”l helicopter mom when it comes to safety.

As life would have it, I have a child who is fearless – she has absolutely no regard for safety. My sensory seeker runs into streets, jumps and climbs onto everything that isn’t meant to be climbed or jumped off of, and bounces her way through life. She talks to random adults (otherwise known as “strangers”) everywhere we go, and comes home with pockets full of worms. I fear the day she is fast enough to catch a lizard. Taking her to a furniture store is the equivalent of taking her to a soft play place, but without the door charge. As you can imagine,she makes this safety conscious mom’s heart leap into my throat on the daily. Her body is permanently adorned with bruises, bumps and scrapes, but injuries don’t slow her down.

So – how does a safety conscious mom sleep at night knowing that each morning her sensory seeker will be up before sunrise, ready to jump her way through the day/off the walls? Here are a few things I put into place to keep her from getting seriously injured while she performs all her own stunts:

  • Fun-noodles: these are not only fun for pools and sword fighting. They are great to cover sharp and/or hard edges and railings. They also help slow down a fast-moving climber. When she was a baby, I lined her crib rails with fun noodles.
  • Corner guards: These are great and come in a variety of colors to blend with furniture.
  • First aid kits: Injuries are inevitable, but keeping a small first aid kit helps alleviate the worry and when injuries happen, my daughter feels better knowing I am doing something to address her concerns.
  • 6-inch twin mattress: These are easy to move around crash pads. As long as she is going to be jumping, I like to keep a soft landing place available to her.

How do you keep your sensory seeker safe? Share your safety tips in the comments!