“My Little Wanderer”

Imagine, if you will, getting ready to leave the house. You've got three little ones roaming around, excited to venture outside, a diaper bag or two to pack and a mental checklist that gets longer everyday of things you have to remember before leaving the house. You open the door and turn to grab, whatever you need to grab, and before you can say “crap!”, you’re middle child has slipped out the door with cat like contortion. By the time you get the door all the way open, she’s already darting between the cars on her way to the middle of the parking lot.

Time stops for a minute as you run every scenario of what “could” happen through your head. You know that the people you live around zoom in and out of the parking lot without a care in the world sometimes. They wouldn’t be able to stop if they wanted to if she suddenly appeared in front of them from behind one of those parked cars.

It’s one of those situations where you catch her, just in time, but don’t remember moving from the doorway because your brain was too busy thinking up the above scenario.

Well, that has happened to us a few times. It seems, no matter how well we watch Bella, she manages to get away from us. She’s what the autistic community calls a “runner” or a “wanderer”. Some older autistic people are called “escape artists” because it seems no matter what you do, they manage to find a way to get out of the house.

There are a few known reasons why they run. Some wander simply due to being distracted. They hear a noise that they want to find or see something they want to explore. Sometimes they may actually run to get away from a noise that is causing them some discomfort or a situation they find overwhelming or overstimulating. The repetitive sound their feet make when they hit the pavement, the feeling they get when they are in motion… all ways of self-comforting.

Just under half of all autistic children and adults are “runners”. Almost half of all of them are non-verbal or has serious issues with communication. Worst case scenario would be that they run or wander away quickly and get lost. They are unable to communicate their names, addresses or phone numbers.

Being hit by a car and drowning are the two top causes of death for known autistic runners.

We’ve asked our property manager if we could put up a sign that warns drivers that there is an autistic child present. We were told “no” because it’s “our job to keep her out of the street”. While this is true, there are times when she does get away. It would just be nice if the people who lived around us knew to please slow down.

Our next option is to ask to build a fence around our yard. The Peoples with Disabilities Act should allow us to do this without question. This would be more than helpful when we take the kids outside. Not having to chase Bella around the entire time we’re outside would definitely lower the stress level and increase the things we can do along with obviously, keeping her safe and out of the street.

There are some things that parents of autistic runners can do both at home and when you’re out in public.

At home, make sure you utilize child safety locks, knob covers and baby gates. Pretty much whatever you can use to keep your child inside. Put a sign on your door to let people coming in and out know that you’re child might try to sneak out behind them. We’ve had to do this with Bella since she takes any opportunity she can find to get out the door. There have been many times when she’s slipped right past someone and they didn’t even know it until she was running ahead of them. For older children and adults who can get passed locks and knob covers, some have resorted to using door alarms. While it can be pricy to install these alarms, some say that it’s the only thing that they can do.

Running and wandering are also considered stims and autistic people do it for the same reason they spin. Comfort. Sometimes, trying to get rid of the behavior all together can actually cause more anxiety and frustration, so try to give your child a safe place to run. While no amount of running will “get it out their system”, it can help take the urge off running when they shouldn’t.

When you’re out in public, and your child walks on their own but is prone to wander off, consider using a child harness. Also known as a kid “leash”, they aren’t exactly the most popular contraptions in the world, but the safety of your child should be your first concern. We’ve used this with Bella on a couple trips to the zoo and when we take our family walks and even though we have gotten some snide looks and comments, she had a great time being able to walk by herself instead of being trapped in a stroller.

If you’re going out with a large group of friends or family, make sure they all know about your childs tendency to wander or run. The more eyes on the lookout, the better. Also, tying a balloon to your childs wrist will make them easier to spot if by chance, they do get separated from you.

A couple of high tech ideas include electronic monitors that sound an alarm when your childs wanders too far from you. GPS trackers are similar in that each parent has one as does the child. If you’re child were to get lost, the GPS could give you an exact location.

An ID bracelet, similar to a medical alert bracelet can be worn by your child and if they get lost, their information will be easy to find. Another popular idea used by a lot of parents is a “Book of Me”. A little laminated book that contains vital information and contact info that’s worn around your childs neck.

Also, children who are non-verbal, rarely answer to their names. If your child begins to wander off and you need them to stop, consider singing their favorite song. Bella responds to “Twinkle, twinkle little star” better than her own name and I’ve done this frequently to get her to stop in the tracks so I had time to get her. At home, sing the song with your child a lot. Do a little dance or a clapping game to it. I’ve had Bella stop whatever she was doing to join in. Don’t feel silly if you ever have to do in public. Trust me, the odd looks you’ll get matter little when your childs safety is in question.

Having an autistic child that runs or wanders is just another issues you have to deal with. Experimenting with different ways to curb the behavior can get tedious and tiring, but every time you learn to handle a certain issue, life will get just a little bit easier.

Wish us luck on getting that fence!

Running for Bella is a thing of joy... she loves running with her sister.

My Confessions #3

I try to focus on the positives, which isn't really a bad thing, but in that, I’ve been accused of “sugarcoating” my life a little bit. Especially where Bella is concerned.

There are a few reasons that I choose not to write about the darker side of living with autism. I don’t want people to feel sorry for me, or her. I don’t want to come off as being a horrible mother and, the biggest reason, is simply guilt. I have no qualms with admitting when my other kids do stuff that drives me nuts, but for some reason, when it comes to Bella, I just feel bad when I let myself admit that some of her behaviors, drive me nuts. I know that most of it is out of her control, which just goes to make me feel even worse.

I want to say first that I am NOT ashamed of my daughter. When we’re out in public and she’s spinning, flapping her arms and flicking her fingers, I know that she’s just trying to make herself feel better. I can see grown adults snickering, pointing and laughing at her like she’s their personal source of amusement. Bella smiles, unaware of what is really going on around her and sometimes I think that’s not such a bad thing. As much as I want to yell at these people and explain to them what’s really going on, I know that with some people, it wouldn’t even matter. My daughter is not for their amusement! She’s a two year old child and doesn’t deserve being made fun of, especially by adults!

There are things, however, that I wish I knew how to control better. There are times when I just want to sit down, relax with the kids, maybe color or draw something. Bella can not sit still. She is constantly moving. Her attention span is very fleeting and she can’t stick to one thing for more than a few minutes. There are times when I wish she would just sit down with me, curl up and let me read her a story, like Rayne does. There are a lot of things I wish she would do with me, but she just can’t. It does make me sad, but it’s just another thing we’ve got to work on. I am determined to find something that Bella and I can do together that isn’t school related.

All these things might sound like typical two-year-old behaviors, but it’s like a two year old times a thousand. She is unable to entertain herself, focus for long periods of time and most of the things she finds fun are rather destructive. Sometimes it feels like my entire day is made up of cleaning up after Bella. While I’m cleaning up one mess, she’s busy making another one.

I hate that two minutes after I give her a bath, I catch her pouring juice in her hair and have to give her another one. I feel bad for Rayne when she has to come down and get us up at two in the morning because Bella isn’t sleeping and keeps waking her up. I hate that I can turn my back for a minute and she’s managed to get her diaper off. I hate scrubbing poop out of my carpet (and giving her another bath).

Our safe room (livingroom) where Bella spends a lot of her time is relatively empty. There is a couch, an area rub and a TV in there and she still manages to find something to mess with. Unzipping the cushions and pulling the stuffing out, pulling up the rug… trying to climb on to the TV.

She’s really smart, which is also one of our biggest issues right now. No lock, latch or child safety contraption can hold her back. She figures out how to unhook, unlatch and open all of them in very little time. She’s recently learned to open the big doors, so we’ve had to install locks on the inside of the doors as well.

Bella is also a “runner” so her being able to get out the door is dangerous. Also, when we take our walks, we’ve had to resort to putting her on a kid “leash”, which of course has opened up for more mockery. Her safety comes first, so it doesn’t matter to us, but for some reason, a lot of people have a lot to say about it.

Generally, anything the ends up in Bella’s hands will most likely be spilled, poured out, torn, ripped, broken or somehow mangled.

I know that some of this might sound like I am not watching her well enough, but trust me, I watch the kid like a hawk and it seems the second I turn my back, she’s found something to get into. Something to climb on, something to put in her mouth.

So, you take Bella and add in an almost four year old who’s going through a “clingy look at me” phase and an 8 month old who’s learning to crawl, not to mention the everyday house work and you get one hectic schedule to keep.

During the day it does get a little rough, but when Cy gets home from work, he takes over and give me some time to myself. My mother is a godsend and comes over practically everyday to help me out a little bit.

I didn’t write this for people to feel sorry for me… in fact, I think I wanted to write this as a way to really admit to myself that it’s okay to find some of it “drive me crazy” side of things. I know that this is my life and I can accept that. I’m her mother and it’s my job.

With every new issue that comes up, all we can do is find a way to make our lives a little easier every day.

Happy Mother's Day

Happy Mother's Day to ALL the mothers out there.

Every mother is just trying to do the best they can for their kids. Even though the media seems to want society to continue the long enduring pastime of judging other mothers for their choices. Don't let any news report, magazine cover or celebrity make you think that you're "less than".

We really are all members of the same team but unfortunately there will always be those who think they're doing it "right" and other's are doing it "wrong"...

Screw 'em.

If your kids are happy, healthy and you're doing your best, that's all that matters.

Two Steps Forward, One Step Back

It’s been a hectic couple of weeks in my house and I want to apologize for not updating as frequently as I was. I found out a couple of days ago that I have pneumonia. I haven’t felt well for a while now, and it’s nice to finally be on some meds and feeling a bit better. As you can imagine, being that sick and having to take care of three young kids has a way of draining what energy you do have left, right out of you.

Anyway, a few days ago, Bella did something that I’ve been waiting for, for a very long time. She said “I love you”. The overwhelming joy that I felt was amazing and I’m pretty sure I walked around with misty eyes for hours. It was a great step. While I wish that I could focus on that for… well, longer than I have, I also have to focus on the disappointing mid-year review I received.

I wrote before how we sat down with her teachers to discuss what we wanted to happen this year. While this, of course, was just a “hope list”, I was still a little disappointed that she hadn’t met any of her goals. While she is vocalizing more, they still can’t count anything she says as “words in context”. We wanted her to learn twenty, at this point in time, she has about three. I consider three to be a great improvement since she was at zero.

Unfortunately, with every improvement she makes, she also seems to take a step back in another area. While her meltdowns don’t last as long as they used to, she’s begun pinching herself and pulling her own hair. She’s not causing any serious issues yet, but we’re told this behavior can escalate when she gets older and cause severe injury.

 While she’s improved with her irritation to clothing, she’s begun avoiding foods. Unless the food is pureed to the consistency of baby food, she’ll refuse to eat or she’ll take it and then throw it on the floor. A very frustrating issue for us and our carpet.

Perhaps one of the biggest new issues we’ve been facing is her affinity for running. We noticed it last summer, but she wasn’t as nimble on her feet as she is now. When we’d go for our walks in the afternoon, we noticed that she would run ahead of us. We didn’t have an issue with that since we were in the fields and woods, and she never ventured off the paths. One day, she did. We were letting her run on the sidewalk, back and forth between the two of us and in the blink of an eye, she turned and ran right into the road. She doesn’t comprehend danger so the cars that whizzed by just moments earlier wasn’t enough to scare her into not going in the road. A heartstopping lesson that I felt awful for. I was just thankful that there were no cars coming at that moment. We tried to keep her in a stroller, but she fought hard to get out. Once she learned how to unbuckle herself, that was the end of that. We tired walking while holding her hand, but when we wouldn’t let her run free, she’s “protest”. You know, that thing that kids do when they literally become dead weight hanging off your hand? We decided that it was mean to force her into a stroller. She just wanted to explore her surroundings and in a stroller she could barely see around her. It came down to the choice to buy a harness for her. We were used to the snickers and underhanded comments we got from strangers, so we expected to get more now that we were putting our daughter on a “leash”. We used it for the first time when we went to the zoo. We got the looks and the comments, but Bella was happy. She got to see around her and was able to walk free, but she was also safe. Our daughters safety was more important than the opinions of strangers. We use the harness when we go for our family walks and it works out fine, but we make sure to still give her time to run. The simple joy she finds in running as fast as she can isn’t something we want to take away from her. We just want to keep her safe when she does it. This was the main reason the teachers at school suggested looking into a service dog. With so many kids to keep an eye on, Bella’s running was becoming a little bit of an issue. A service dog, for autism, is trained to keep a child from running and if by chance the child does take off, the dog is trained to actually go after them (since they can run faster than most people), stop the child and actually bring them back to you. We’re still working on the service dog, but in the mean time, at least at home, the harness is working just fine.

On the brighter side of it all, she is improving. She’s counting more and she’s made it up to 10. The words are getting clearer and easier to understand. She’s also sorting things into groups by color which is another great step. Unfortunately, she’s only doing these things at home. Her teachers have yet to see or hear her to these things. At school, she’s doing great with sounds. When her teacher holds up a picture of an animal, she can tell her what sound the animal makes. It’s quite fascinating that the way her mind works tells her that what she learns in school is only for school and what she learns at home is only for home. She doesn’t make those animal sounds when she’s here with us.

Although there was a little disappointment with the review, I try to focus more on the positives and all in all, Bella is doing great. She’s actually come quite far in the short time she’s been in speech and with me working with her a few hours a day, she’s improving at home too.

She’s doing the best she can and that’s all anyone can really ask of her. She’s not giving up, so neither am I.