A Quick Update

Hello everyone! I want to apologize for the long gaps between posts. Life catches up to you sometimes no matter how ‘organized’ you think you are. With school, therapy and all these ‘No School’ days, things just get very hectic. 

Anyway, I just wanted to post and give those wondering a quick update on life in the “Wackadoodle” house hold. 

As some of you know, the little Butterfly is officially spreading her wings this fall and is now registered for KINDERGARTEN. We were told when she was two, and first started therapy, that there was a chance she wouldn’t be able to mainstream, but guess what, like most of her goals, she’s reached them and surpassed them! 

When we went for registration, she was the most excited I’ve ever seen her and so proud to stand on the steps of her future “big school” as she calls it. 

She will be a part of the special needs class, which includes your average number of students, but with more teachers and more aides to assist the kids. She’ll still ride the smaller bus, as we’re not really comfortable with her riding the ‘big kid bus’, that consists of kids from kindergarten to 8th grade. She’ll still have a one on one aide in class since she’s still quite the escape artist and still likes to sneak away and into other classrooms. 

Outside of school, we continue to struggle with sleep issues and the newest thing we’re trying to counteract is her behavior. She’s a headstrong little girl, but sometimes that gets in the way of following directions. 

Little Bug has been making small steps forward and will soon be officially evaluated by the Kirsch Center for an official autism diagnosis. This will help us narrow down what therapies will best benefit him and, with an official diagnosis, he’ll qualify for therapies that he can’t get right now. 

In other news, he’s learning sign language (as are we) which is a very slow process. His attention span isn’t really set for learning signs, but he’s picked up on the signs for ‘more’, ‘food’ and ‘drink’. You wouldn’t believe how much those three little signs have helped. 

Unfortunately, we’re noticing more and more that he’s much more behind than Bella was at this stage in the game. He has still said no real words, although he’s babbling much more than he used to. He has the same sleep issues and food issues that she did, but unlike Bella, he’s a very solitary child. When Bella would feel overwhelmed, she wanted reassurance in the form of a hug, or being held. Nikolas on the other hand, prefers to be alone, in this room with his music box. To an outside party, it would look as though he’s being neglected, or ignored, but sometimes, children with autism just need to be ‘away’. Alone. In the quiet, comfort of their own space. Niko’s room is set up with minimal items. His bed, a few toys and most importantly, his music box. He responds so well to music, that even his teachers and therapists have mentioned that music therapy seems a fantastic option for him when he begins therapy full time. 

As always, we take things a day at a time. Having two kids on the autism spectrum isn't exactly a walk in the park, bu you do what you have to for your kids. I'm so proud of the progress that Bella has made and I have high hopes for Nikolas as he continues his therapy. 

Progress Report

Well, we had Bella’s second six month progress report meeting and I am proud to say, she is doing great! Everyone is quite proud of the advancements she’s made, especially when you consider that less than five months ago we were told that there was a very high possibility that she’d never use words on her own or be able to communicate with us.

To put it in perspective; three months ago, before she began her applied therapies, Bella didn’t use any words on her own. The ones that she did use were usually being repeated. Today, Bella has a vocabulary of about 12 words that she uses on her own and in context.

Her communication towards us, and others have improved so much that there are days when I am literally smiling ear to ear listening to her. Having the ability to ‘tell’ us what she wants has lessened the frequency of meltdowns and has lowered the level of frustration for not just her, but for us too. She still uses signs, but now she can also say ‘thank you’, ‘please’, ‘you’re welcome’, ‘juice’, ‘more’, ‘food’, change’, ‘all done’, ‘yes’, ‘no’, ‘mommy’ and ‘daddy’. She can also identify her sister and brothers (almost) by name and point them out when we ask her who it is.

She’s responding to one to two word directions, like ‘get shoes’ or ‘brush teeth’ and we’re even making some leeway on potty training.

Another thing we’ve noticed that is Bella loves music and responds to it greatly. She’s been caught, on more than one occasion, walking around the house, singing! One of her favorites, right now, is “Old McDonald Has a Farm”. She loves making all the different animal sounds. She also knows all the words to “Twinkle, Twinkle Little Star”, “Row, Row, Row Your Boat” and she can sing the “ABC” song, although I’m not sure if she knows that it’s the alphabet or just a song.


She loves to dance at home, so they thought that she might like to do it at school too, but they only offer Zumba. The loud music and screaming kids isn’t something that she can deal with well with her auditory sensitivity. Instead of Zumba, she spends extra time in the sensory room and seems to be really benefit from that.

Bella has made so much progress in physical therapy that they are going to drop her down to just one class per week. That actually works out well, giving her some open time during the week for another speech class or another music therapy session.

Although Bella still has the overall development of an 18 month old, the progress that she’s making will most likely bump her up to the 24 month old level.

Another thing that has amazed us all is the fact that, even though autistic children are unable to empathize or really identify emotions in others, Bella has been able to learn what an appropriate reaction is to certain emotions. So if one of her classmates is crying, Bella will go over to them and pat them on the back. When she hears her baby brother crying, she’ll try to give him a stuffed animal. She may not know what it means when someone cries, but she understands that trying to make them stop is the right thing to do. I guess it’s just a longer way to learn how to respond when someone is showing a certain emotion and while it may seem to come naturally to most people, all things like that are learned somehow. I guess Bella just has to learn it another way.

As with all progress, there is always some regression or, in our case, a standstill. Bella still tries to run from the classroom, and when we take our walks or let her walk on her own at the store, she still tries to run. I think that running will be an issue that we’ll have to deal with forever, not just because it’s a common issue among autistic individuals, but because it seems to be something that Bella loves to do. Hey, maybe she’ll be a future track star? You never know. Her inability to sense danger or realize that something could hurt her is something that we’re always working on.

All in all, I am very proud of her and so thankful for the hard work her therapist and teachers put in. I am also very grateful that they found a wonderful one-on-one aide to work with our daughter. Bella seems to love going to school and she’s very comfortable around her teachers. And of course, they couldn’t say enough wonderful things about how sweet she is. They all love her to pieces.

We were told that we’re doing a great job with her at home, which, of course, is always nice to hear.

“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.