Editor's Note: Today's story includes excerpts from Suzanne Mitchell's book, Autism in a Nutshell? Okay . . . Maybe a Nuthouse: 101 Reasons Our Family Is Sooo “Special.” Purchase the full book from Amazon to read more of this autism family's adventures.
SHARED BY SUZANNE MITCHELL
Hi! We are the Mitchell family. I am Suzanne. My husband Darin and I have been together since 1989 when I was just sixteen year old (now 43 . . . yikes). He was the bass player in my older brother’s band, and I was the cool “rocker” chick.
Our mutual love of rock-n-roll is what brought us together, and our deep love for each other and our little family is what has kept us going strong all these years.
We were married in 1998 and have two beautiful children—Joey is fifteen and Shayna is twelve. Joey has severe autism. He is not very verbal, is not potty trained, and can be quite unpredictable at times.
We are not your average family. People often ask me what our life is like, and I always find it difficult to explain. If I had to put our life into a nutshell, I’d have to say that is full of insanity, patience, inspiration, persistence and love.
But if you really want to know what life is like for one crazy autism mama bear, please read on.
Chapter 6: It's Potty Time
I know you knew your ABC’s, why then won’t you sing with me (anymore)?
Oh, where do I even start with this one? Heavy sigh. Pottying. Hmmm. Ok, well when Joey was about two or two and a half, and maybe even for part of three, he was seemingly catching on to the whole potty training thing. He would go pee when I would sit him down, and sometimes he would even say “pee pee on the potty” when he actually had to go. He would poop in the potty fairly regularly at that time too but only if I had the right timing.
Then came baby #2. My sweet little Shayna Bug. I started having what I know now are panic attacks soon after having my daughter. I didn’t understand what was wrong with me, but I soon realized that it was not me or the new baby that I was concerned about—it was my Joey.
Denial is a powerful tool, and the concerns that I may have had about my son when I got pregnant with my daughter were shoved deep down inside my soul until they reared their ugly heads in the form of panic attacks after giving birth. I thought I was going to die at any moment. It was terrifying.
So now I guess I have to back up a little bit. I always knew that I would stay home with my babies when I had them. Thankfully, I was with my husband long enough before we got married that I had already drilled that fact into his head, as well. We were married a little over two years when Joey was born.
It was amazing. I took Joey everywhere. I did everything with him. We were inseparable. (Literally inseparable if you ask my family—they say I wouldn’t even let anybody else hold him. I don’t remember it that way, but oh well . . . hee hee.) We sang, we read, we played, we learned; it was a magical time for both of us. Of course at the time, I had no idea exactly how precious every tiny morsel of my teaching, and his learning, would be.
As time went by, he learned and sang tons of songs, he knew all of his colors, all of the letters, numbers, shapes, animals, etc. He would fill in the blanks on the next line of the book, he would touch pictures and follow along. He would talk about his day when he got into his crib at night. We would hear him giving the highlights on his baby monitor: "Went to the library, saw animals, fishies, swings, park," etc.
It was so cute. He would say, “Hi, Mama!” when I came into his room to get him. He would ask for different things and was quite easy to understand. He loved it when I read to him.
Then one day he didn’t like it anymore.
I wish now that I had all those wonderful moments recorded somewhere besides only in my head, heart, and soul. I had no idea how absolutely precious and perfect those moments were. Any mother would assume: I thought this was the beginning of blossoming language, not the end.
As a stay-at-home mom, and just because of who I am, I definitely noticed that Joey began to "forget" things that I knew he previously had known. For quite a while, I was blaming myself, thinking maybe we hadn’t sang a particular song for too long, or we hadn’t read a certain book in a while. Why didn’t he know these things anymore?
I was not sure what the heck was going on, but in retrospect, my denial was kicking in full force. I soon found myself pregnant with our daughter and shoved everything way down. In fact, during that time, I would get very angry at anyone who would point out and question any of Joey’s issues.
“Why is he flapping his hands and arms?”
“Why is he jumping like that?”
“Why isn’t he talking?”
There was a short period of time when I remember him having some strange crying spells. He would suddenly get this blank look on his face and say things like, “Do you see the people?” and some odd phrases he made up that sounded like, “Sa be dee." He would say these things while wiggling his fingers in front of his eyes.
I had no idea what he was doing or why he was doing it. He would sit there and cry for no obvious reason with these strange behaviors and would calm down within a few minutes. I was really scared, but I did not want to admit that anything was wrong with my perfect boy.
So what happened with him? For my purpose here, suffice to say that my perfect boy lost an extraordinary amount of language and skills during his second year of life (including using the potty). My feelings on the subject could fill an entire book on its own. I know he was not born with autism. That is the bottom line.
My Joey is now 15 years old, and we still work every day to gain back all of what he lost back in those early years, and this will continue until I take my last breath.
Boing! Boing! Boing!
When we named our son "Joey," we had no idea that he would completely share the same instinct and passion for jumping as his namesake, the baby kangaroo. My boy is a jumper! He jumps and bounces around like nobody’s business.
Not only does he love to bounce on beds, trampolines, and bouncy houses, but this kid can bounce in his step no matter where he is! He will suddenly jump 5, 10, or even 20 times in a row, just standing on a regular floor.
Since he has done this for so many years, I am quite used to it, but since he is a lot bigger now, I can’t say the same thing for our poor floors! When he jumps in his room, which is now on the second floor, you can feel vibrations and hear the noise throughout the rest of the house. He will jump when he’s overly excited or happy, but he will also go into an extra loud stomping kind of jump when he is on the verge of a meltdown.
The most memorable jumping episode in recent history was a couple years ago, when mom and I took the kids to a free museum in Kenosha, WI. It was a fun day. We started with a picnic lunch outside and then went into the museum to look around.
Well, we got to this one exhibit that had several historic artifacts enclosed in cases. Seemed "Joey-proof" enough, but I guess not exactly. We were walking through one of the exhibits when Joey went into one of his jumping crazes.
There was a vase in a large case right in front of us that actually started to do the death wobble. My mom and I just looked at each other in sheer shock and panic as we watched this vase wobble and spin, wobble and spin, wobble and spin, and then finally stop—miraculously staying in its upright position. Holy heart attack! That was nuts!
We laughed so hard as we hightailed our way out of that exhibit. It was definitely a different kind of museum visiting experience. A day that may or may not have been very memorable now has images that are forever burned into our brains. Pretty funny, since it all worked out okay, but sheesh . . .
Really, honey? You’ll eat leaves and dirt, but dinner makes you gag?
Oh my silly boy . . . always a puzzle. Yep, there is nothing much more humbling than presenting your child (who will put pretty much anything into his mouth) with a nice, home-cooked meal, just to have him either smell it and push it away, or put it to his lips and actually gag. It happens every so often and never fails to make me reevaluate my culinary skills.
He actually threw up one time when I gave him a bite of my homemade chicken soup. He really did! I may not have been quite as stunned if he hadn’t still had a slightly visible ring of dirt around his mouth from playing outside right before dinner. Hmm . . .
I wish I had done better in biology . . .
Quite frankly, I have never been a science-minded person. I was always a fairly good student, but science was never one of my best subjects. The thing is, it’s not that I didn’t try; my mind is just not wired that way.
Well, this was a fine slap into reality when I was tossed into the world of autism, gut issues, and biomedical treatments—not to mention the pharmaceutical end of things. Holy cow. It’s frustrating because I know there are potentially life-changing treatments out there for my boy, but it’s all so freakin' complicated—and excruciatingly expensive, and of course, not covered by my insurance.
We have tried many things, and there are still many left to try, but sadly (and quite inexcusably if you ask me) there are still not enough reliable resources out there to help all our families navigate and utilize these extremely scary, outrageously expensive, and ridiculously and unnecessarily controversial treatments.
Why do we all have to start from scratch? It’s such a lonely and treacherous path for so many of us. It shouldn’t have to be that way, but it is. The numbers keep going up, “awareness” seems to be more prevalent, yet services are still way behind the times. Something truly monumental has to happen very soon. It just has to. If only it weren’t so messy. Big sigh . . .
Lighting It Up Blue
April is autism awareness month. Several years ago, Autism Speaks created the Light It Up Blue campaign, bringing some much needed attention to all of us who live this life daily.
International landmarks around the world join in and show their support on the second day of April every year. We change our outdoor light bulbs from clear to blue and ask family members, friends, neighbors, local schools, community buildings, etc. to do the same.
At our house, we leave the lights up for the entire month. Now I ask you. Do you light it up blue? I hope so. It’s a little something that you can do to warm somebody’s heart. Autism can seem like a lonely world sometimes, and it always nice to see that people are willing to make a little effort to show their support.
This post was originally shared on November 8, 2016.