Tag Archives: autism

Autism, Birthdays, and Friends

So, I’m looking at the date on my most recent blog entry and realizing that it was nearly a year ago. Oops! Where does time go? For whatever it’s worth, I’m back!

What has inspired my return?

My son C’s 5th birthday was this week!

Cookies

Those are C’s birthday cookies. Yeah, that’s right, I said cookies. 

See, there are all you Pinterest-pinning moms out there who are all like, “I made my son an Under-The-Sea 3-tiered cake with clownfish and turtles and 12 kinds of underwater flora. It was adorbs!”

Pinterest, I hate you.

…while I’m all like, “Yeah, well, I opened up a pack of Oreos and arranged them on a plate to look sorta-kinda like the number 5. Because autism moms ROCK!”

Okay, before you judge… C hates cake and ice cream. As in, if you try to feed him the offending substance, he will scream and cry as though you were force-feeding him poison.

But he loooooooves Oreos!

This was last year’s “Birthday Pile of Cookies In Lieu of Cake”:

Oreo cakeLast year’s cookie pile was bigger because we had a fun party at Chuck-E-Cheese, surrounded by family and good friends. The only problem? We had about a dozen adults, but only 2 of C’s friends.

Because Connor spent most of his time in 1:1 intensive therapy settings with adults, he didn’t get much of a chance to interact with other kids. There was his best buddy E that he’s known practically since birth and is like a sister to him; and S, a teenager with autism who C thinks is awesome, but being about 11 years apart makes it rough to plan playdates. But hey, if you have 2 good friends in the world, you’re blessed. Right? He also has 2 cousins that he enjoys spending time with, but they weren’t able to make it to the party.

Fast forward to a few weeks ago as hubby and I started talking about planning C’s 5th birthday party, and it dawned on me: Who would we invite? C has been in his 1:1 therapy placement for 2 years now, and although he’s made tremendous progress in his language and academic skills, he still has very few friends.

Okay, okay, I know what some of you are thinking: That this is my feeble attempt to ride on the coat-tails of Colin, the adorable 11-yr-old who recently told his mom not to bother throwing him a birthday party because he has no friends. His wonderful mom started a Facebook page to prove him wrong — that there were, in fact, people in the world who care about him and want to be his friend. The page now has over 2 million likes and Colin has become somewhat of an Internet sensation.

That’s not my intent at all. Although I’m happy for Colin, I wouldn’t want my son C to have over 2 million “friends”. I’m a Helicopter Mom, remember? No, I’m simply trying to process the unspoken worry that has been on this momma’s heart all week…

Will my son have friends as he gets older?

There are so many kids like Colin who get bullied and shunned by their peers for being different. My response so far to protect C from this danger has been to keep him in a 1:1 environment. Therapeutically and educationally, that was a wise choice, but socially? I haven’t been able to give him what he needs.

We decided to forego planning a big party and just celebrate as a family (C, hubby, and me), following C’s lead to see what he wanted to do. Our day consisted of a trip to a local restaurant that serves C’s favorite chocolate milk, eating Oreos, opening his birthday gifts (a Spider-man skateboard and scooter, with a matching helmet and protective gear), and watching Spider-Man cartoons. Because that’s what C wanted, and he was perfectly happy!

However, there was one other event: We toured a nearby school for children with autism that offers small classroom instruction in addition to individualized therapy. C was so excited to visit the “new school” that when the tour was over, he said, “Let’s go again!” So I took the plunge that every Helicopter Mom dreads and decided to try something new; I enrolled C at the “new school”. He starts in 2 weeks. His current therapists have done such great work and it will be difficult to say good-bye, but I believe this will be a good move for C. A chance to make new friends.

There is one leftover item from Connor’s
“5th Birthday Party That Did Not Happen”…


A Ginormous Monkey Piñata.

Well, not this exact one, but there is a similar monstrosity hanging in my dining room at the moment. Because where else does one store a Ginormous Monkey Piñata (GMP)? Hubby and I thought about filling it with candy and letting C have a go at it by himself… but when I considered the consequences of allowing C unfettered access to several pounds of candy, I decided to hold off. We will most likely store GMP in the attic until next year, when we’re ready to throw C a birthday party again. Our hope is that by that time, C will have lots of friends to invite to his party.

To me, GMP is a sign of hope.

Spotlight on Early Diagnosis and Intervention in Ohio

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Ohio’s Autism Diagnostic Education Program (ADEP) and P.L.A.Y. Project Early Intervention program are helping children receive crucial early diagnosis and intervention. Excellent programs!

For more info on ADEP, visit http://concernedaboutdevelopment.org/
For more info on P.L.A.Y., visit http://www.playproject.org/

Autism, Wandering, and “Handicapped Parking”

“Your only handicap is in your heart.”

ImageMy friend, who was recovering from hip surgery, found this note on the windshield of her car one evening. Apparently a passerby did not think she “looked disabled enough” to use a “handicapped parking” space, despite her clearly displayed parking permit.

(In an effort to use “person-first” language, the term “accessible parking” will replace “handicapped parking” for the rest of this article, although “handicapped/disabled parking” is still the most commonly used terminology, for better or for worse. That’s a topic for another blog!)

We have all seen people using accessible parking spaces that didn’t “look disabled”, and we have all judged them. Some don’t even have a permit displayed. We are quick to assume the offender is simply “too lazy” to walk a few extra feet. There is even a website dedicated to reporting people for “handicapped fraud” that encourages the use of Post-It notes on the windshields of alleged offenders:

ImageHowever, since the day my friend received that completely unwarranted, judgmental note on her car, I have tried to remind myself that things are not always as they seem.

Some people may not realize they are illegally parked due to inadequate marking of the parking space. Others may have a valid permit, but forgot to hang it in the window that day. Still others, like my friend, may have a severely limiting yet “invisible” disability. So even when I see people that seem to be illegally parked, or abusing the system with a parking permit they don’t appear to need, I don’t do angry confrontations or leave ugly notes on people’s windshields. I try to extend grace.

My son C and I do not “look disabled” either (at least I don’t think so). My doctor offered me a temporary accessible parking permit while I was pregnant with C. I was taking college classes at the time, and was physically unable to walk from the commuter parking lot to the classroom building due to early stages of preeclampsia. Later in my pregnancy I sprained my ankle for the umpteenth time in my life, did not seek medical treatment right away, and subsequently developed chronic ankle instability. At times it causes a severe stabbing pain in my foot with every step, and at times I’ve had to forsake my summer sandals for hiking boots to minimize pain and keep my ankle from randomly giving way.

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When my doctor ordered physical therapy, I asked if she would be willing to renew my accessible parking permit for another 6 months. Instead, she renewed it for 5 years. “Wow,” I thought to myself, “Five years? I thought she ordered physical therapy, not amputation!?!” I actually felt guilty (even though I had not asked for a 5-year pass), because I thought my doctor had done something dishonest as a “favor” to me. Several months later when I was discharged from PT and the pain was gone, I tucked the permit into my glove compartment and did not use it for a while. However, the pain continued to recur several times a year (after all, it is chronic), and I began to realize why my doctor had issued the pass for a longer term.

For the most part I only used the permit when I was actively experiencing pain, although I will confess to using it on a few occasions for simple convenience. The last time I did so, I came out of my local bank to find an elderly man struggling to walk across the parking lot with a cane, because I had taken the only accessible parking space for my own convenience. I felt horrible, and vowed to never use the permit again unless I was in severe pain.

Then C started bolting away from me in parking lots.

ImageBecause of his autism, C is fascinated with the spinning wheels on cars and tends to run toward traffic instead of avoiding it. I now use the parking permit any time C is with me alone in a large parking lot (e.g. mall or shopping center), unless there are non-designated parking spaces within a short distance from the building. Or unless he’s wearing Mr. Monkey and is in a particularly compliant mood.

“Wait. Isn’t that abusing the system?”

ImageAlthough my parking permit is designated for me, it is possible to obtain an accessible parking permit for a child or adult with autism who bolts/wanders. In 2011, the CDC created an ICD-9-CM diagnostic code for Wandering to be used in conjunction with codes for conditions such as Alzheimer’s, autism, or dementia. In such cases, wandering related to autism is considered to be a neurological condition that substantially impairs the person’s ability to walk long distances without physical assistance (to keep them from bolting away from safety). The use of this diagnostic code is not without controversy, however; several disability rights activist groups fear it will be used as justification for greater use of restraint, seclusion, and civil rights violations by various institutions and caregivers.

ImageLook out, Mr. Monkey! They’re after you!

Guidelines for obtaining an accessible parking permit vary by state, and the person’s doctor needs to write a prescription for the permit describing why there is a need. I don’t think C’s pediatrician would have any problem writing such a prescription, but because I already have a permit anyhow and C is with me most of the time (Helicopter Mom, you know), so far it has not been an issue. Personally, I have never encountered anyone who gave me a hard time about using my permit, although I’m sure it looks suspicious for a visibly able-bodied woman with a rambunctious young child to occupy an accessible space. Other families have not been so fortunate.

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I do try to avoid “van accessible” spaces designed for persons who use wheelchairs, because if it’s a choice between putting Mr. Monkey on C’s back and walking a few extra yards, or taking a parking space from a person using a wheelchair who truly has no where else to park… well…

I don’t consider us to be “disabled enough.”

Or at least we don’t need as much extra room to enter and exit the car. I am simply thankful that the accessible parking pass is one more tool in my arsenal to help keep C safe.

Autism, Wandering, and Helicopter Parenting

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“Do you always treat your kid like a dog?”

Those words, practically shouted at me by a stranger sitting at a table adjacent to ours in the restaurant, pierced my heart.

“Excuse me?” I said. “No, I do not treat my son like a dog!”

“Sure you do. You have him on a leash like a dog!”

Earlier when we had arrived at the restaurant, C saw his beloved monkey backpack harness sitting in the back seat of the car and said, “I want monkey!”

ImageC loves his monkey. When he’s not wearing it, sometimes he gives it hugs and kisses. Given C’s tendency to wander from safety due to his autism, and the fact that he and I were about to dine alone in a large buffet restaurant (in the hopes of convincing him to eat something other than chicken nuggets and french fries for a change), I was happy that he asked to wear the monkey. It would be easier to keep him close to me. However, I knew from experience that I was likely to be on the receiving end of some judgmental stares and comments as a result.

As I tried to explain to Mr. “You Treat Your Kid Like a Dog” that my son has autism, tends to wander from safety, doesn’t always respond to his name, and requested to wear his harness that day, the man replied, “Aww, I’m just having fun with you.” (In other words, lighten up lady, it was a joke.)

“Well, sir, it’s not ‘fun’ for me. My child has a disability.”

His wife proceeded to spend the next 10 minutes telling me how she knows all about autism because her friend’s sister’s daughter had encephalitis 30 years ago and now lives in a group home for adults with mental retardation.

  1. Autism and encephalitis are two completely unrelated neurological conditions.
  2. Autism and mental retardation are two distinctly different conditions as well, although they do sometimes overlap. My son is reasonably intelligent, despite his social and communication delays.

As I smiled and nodded, feigning interest in the woman’s irrelevant discourse to avoid further confrontation, I thought to myself:

“Oh for the love of God… I just wanted to eat lunch with my son! Why does every attempt at having a ‘normal’ experience have to turn into an Autism Awareness training session?”

ImageIn light of the recent tragic losses in the autism community due to wandering-related deaths, I wanted to share a bit of our family’s struggle to strike a balance between allowing C a healthy amount of room to explore, and keeping him safe.

I will never forget the first time C wandered from safety. He had only been walking for a month or two. We went to an indoor playground at a local mall so that he could try out his new walking skills. As usual, he crawled into his favorite tunnel, sat down and made himself at home. Doesn’t he look happy?

ImageC stayed in the tunnel for several minutes having a great time. As any proud Momma would, I took lots of pictures. I decided to text one of those pictures to Grandma so that she could share in the excitement.

In the amount of time it took me to pull up Grandma’s phone number on my smartphone, attach the picture and hit “Send”, C crawled out of the tube and disappeared.

I was terrified. I quickly scanned the small enclosed playground area searching for C, but he was nowhere to be found. As I ran out of the playground into the mall area, some people passing by pointed across the hall and asked, “Are you looking for him?” My little man had made it all the way to Starbucks.

A few weeks later we went to a playground at a different mall. This one was larger, but had a smaller entrance with a wall all the way around. I stood by the entrance like a sentinel on high alert, determined to make sure my little Houdini did not escape. Suddenly I realized that C was not on the playground. He had scaled the wall at the opposite end of the playground, climbed over, and was toddling down the hall.

That, my friends, is when Mr. Monkey Backpack made his debut.

And that was the day I became what I had previously sworn I would never be:

A Helicopter Mom!

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Well, not quite that bad, but that’s how I felt. Any time we went to a playground, I would follow C around, never letting him get much further than an arm’s reach away. Still, for the longest time he seemed to have an obsession with bolting out of the playground to explore the outside world. This became especially problematic at outdoor playgrounds and in parking lots, where his fascination with the spinning wheels on cars compelled him to bolt towards traffic. So Mr. Monkey became a regular part of C’s apparel any time we went out in public.

If I had a dollar for every time I’ve heard one of the following statements, I’d be a very wealthy woman:

  • “Why does that lady have her kid on a leash? He’s not a dog!”
  • “Hey kid! You’ve got a monkey on your back!”

As C has matured over the past few years, becoming better at self-regulation thanks to his fantastic therapy team (ABA, speech, OT, PT, P.L.A.Y. Project, and music therapy), his tendency to bolt has diminished quite a bit. But it is still there. Recently we visited a different, smaller buffet restaurant. With the previous experience still fresh in my memory, I decided I was not going to use the harness that day; I was going to relinquish my Helicopter Mom role and give C a little more freedom. We got settled into our table, I gave C the iPad with some educational games on it (his absolute favorite thing to do), said, “I’ll be right back. You stay here,” and went to get us each a plate of food from the buffet.

In the amount of time it took me to walk from our table to the other end of the buffet, C disappeared.

A waitress walked up to me and said, “Did your son find you? He’s looking for you.” I scanned the entire restaurant and he was nowhere to be found. Finally another employee pointed toward the front lobby, where there was a large decorative fountain.

C is fascinated with water, to the point that he sometimes tries to climb into fountains and water tables to splash around. As soon as I had walked away from him, C had bolted out to the lobby to see the fountain. Thank God we found him before he climbed in, or bolted out the front door into the parking lot.

That was the day I decided being a Helicopter Mom is not so bad after all.

It is impossible for parents to keep their eyes on their children 24/7. Everyone has to sleep, cook dinner, shower, or use the restroom once in a while. But for our family those things typically need to take place in shifts, so that one parent can monitor C while the other takes a mental health break. Because of C’s daily attempts to slip out the front or back door, we have multiple locks on each door, a house alarm that notifies us each time a door is opened, carefully-secured windows, and a GPS tracking device that remains attached to C’s clothing during waking hours (it needs to be charged each night).

ImageAt night, C often sleeps in our bed so that we know where he is at all times. Still, sometimes I will sleep on the living room sofa, so that in case C leaves the bedroom I will hear him before he attempts to walk out the door. And I am not alone; I have heard of other parents taking turns sleeping on the floor outside their autistic child’s bedroom door to make sure s/he does not elope during the night. When C first started walking, he slept in a PeaPod Plus tent at night for a while, but hubby and I felt it was too small and confining for him (although he could unzip it from the inside). Recently I used it with C at an overnight church event. Most folks thought it was a cute idea, but one person walked up to me and said, “I’m pretty sure that’s not even legal,” going on to comment about how wrong it was to keep my kid “locked up”. I explained that C could unzip the tent from the inside if he wanted to… that it was a tent, not a dog crate, for goodness sake! It was simply designed to encourage him to stay in one place if he wakes up.

When the unthinkable happens – a child with autism wanders from safety and does not survive – many people rush to judgment and blame the parents. If those people had any idea what it’s like to live with the level of hypervigilance our family and many others experience 24/7, their perspective would be radically different.

If I try to protect my child from harm, I’m “treating him like a dog” or being a “helicopter parent.” If, God forbid, my child slips away from me and meets an untimely demise? Well, that’s my fault too.

Welcome to autism parenting. It’s our life, every day.

To help raise awareness about wandering, I have created a wallet card on VistaPrint to carry with me for those inevitable, awkward moments when people comment on C’s harness. The information is based on data from the National Autism Association and the DSM-5 diagnostic criteria for Autism Spectrum Disorder. I hope you find it to be useful as well.

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