My Confessions #4

This is a picture of a billboard that P.E.T.A put up in New Jersey. One of the top 14 states with autism diagnosis in the country. Needless to say, it caused some controversy.

Does this bother me? Yes. It does. It bothers me because P.E.T.A is using a hot button issue like autism to push their own agenda by spreading false information. The people of P.E.T.A read ONE report that said cutting casein from an autistic child’s diet can help relieve some of the issues caused by autism (while this has helped some children, this too isn't a proven fact). They then used this information to launch a billboard campaign in New Jersey saying that cow’s milk causes autism. They ignore the fact that casein is found in many foods, not just milk and some of the those foods are considered vegan, and that no food has ever been proven to cause autism.

I've seen and read some insane facts about P.E.T.A over the years and it’s always shocked me how they twist facts to suit their needs. The most recent of their eye-roll inducing “protests” includes releasing a parody game about Pokémon to voice their disgust at the way Pokémon (computerized, fake animals by the way) are kept in balls and used for human entertainment and fighting. Since Pokémon has been around for the better part of 15 years, I don’t really understand why they now have an issue it. They call it "virtual animal abuse". Speaking of computerized animals. They've also begun protesting Call of Duty, since players are expected to kill Nazi attack dogs in the game. P.E.T.A suggests, petting the dogs and playing Frisbee with them instead. May I remind you again, that these are not REAL animals and if ever someone was accosted by a rabid Nazi attack dog, I’m wondering how you’d pet it if it bit off your hands. They, however, don't seem to have an issue with the fact that you kill humans in the game as well. Interesting fact: P.E.T.A euthanized nearly 95% of the adoptable dogs and cats in it’s care in 2011, using the excuse that the cost of care is too high...yet they spend millions and millions of dollars ($34.5 mil budget) on billboards of naked celebrities and campaigns that tell children if their father likes to fish, then he’s probably going to kill your dog.

Many parents, myself included, never gave our children milk products. Most of our kids began showing signs of autism, before they were weaned off breast milk or formula. In my case, we all have a lactose intolerance and our children were all on soy milk or almond milk when they did begin drinking milk.

This is also something that has begun bothering me a lot. I know that with every hot topic issue there is a period of time where the backlash starts. I can’t really explain why it happens, but it does. It happened with A.D.H.D and it happened with P.P.D so it was only a matter of time until it happened with autism too. It gets on my nerves sometimes though when someone asks you why your child is doing something, and you tell them only to have them say that “you’re using autism as an excuse”. Trust me, I’d much rather say “well, she’s kind of being a brat today”...at least then it would be a normal reason as to why she’s doing what she’s doing. But guess what, sometimes, her behaviors are a direct result of her issues with autism. Sometimes she’ll get overwhelmed at the grocery store or on the playground and she does what we call ‘a protest’, where she’ll lay on the floor/ground with her hands over her ears. Why? It comforts her. She’s not bothering anyone and even when she does yell or scream, it’s not directed towards anyone. There are some who have snide remarks to say and just have to comment. Sometimes I’ll get mad and tell them “she’s not being bad, she’s just overwhelmed” or I’ll explain that she’s autistic and can’t help it sometimes. Then, I’m accused of making excuses for her behavior.

It’s not just annoying, it shows that sometimes people really do need to show some compassion. I get that there are probably people out there that might play the “autism card”, but sometimes you have to realize that some autistic children do have issues with things that you’re not going to understand. Telling a parent that they are “letting their kid” act that way is insulting. Most of us have no control over the reactions our children are going to have in certain situations and the only thing we can do sometimes is to try our best to comfort them and make them feel less overwhelmed. Telling me to “leave her at home until she learns to act right” just makes me want to punch you. I've been witness to many, MANY children who have full blown temper tantrums when they don’t get the toy they want, or they’ll throw things or actually hit their parents when they don’t get their way. For them, it’s a logic of “kids just being kids”...so why is it that I, as the mother of an autistic child, should “keep my kid at home?”

Another issues I've been running into a lot lately are other parents that almost seem to be afraid that their child will miraculously contract autism from my kid. Now, we all know that autism isn't contagious, but that hasn't stopped many reputable colleges and foundations from printing stories that claim that kids who live near a child with autism have a higher percent chance of getting a diagnosis of autism themselves. What they fail to publish is the fact that nearly all of those kids get their diagnosis taken back after more testing and evaluations. See, what happens is, kids that spend time with a child with autism will sometimes mimic certain behaviors, all kids do this. The parents of these kids, having also been around a child with autism, will begin to see every thing their child does as a sign of autism. Call it paranoia or just being a little too sensitive. They take their kids in for an evaluation and at first they show a few signs that they've begun mimicking  but after more testing, it's shown that the child is fine.

I've had people literally move to another area of the playground after finding out that Bella has autism, be that from casual conversation or from just observing some of the typical “autistic like behaviors” that Bella does daily. It’s kind of obvious sometimes. I've had a few people flat out tell me that they’d rather not have their kids around Bella because they didn't want their child to “pick up any bad behaviors”.

It is heartbreaking sometimes to hear these things and to know that Bella is going to have to deal with people like this her whole life. People with autism are incapable of judging others and are unable to lie for the most part, sometimes to a fault. I sometimes imagine what the world would be like if there were more people that were “afflicted” with those same “ailments” (if you can really call them that).

All I can do right now, is be thankful that Bella doesn't know the difference and hope that as she grows, more people will be willing to get to know her, instead of her condition. As a parent, that’s the best I can really hope for and with this blog, I hope to let more people know that even a little compassion can go a long, long way.

Happiness and Halloween

Since Halloween is quickly approaching, I've been asked a lot recently how Bella handles it. The answer to that question is, I don’t know. Last year, she was sick so she pretty much slept in the car the whole time Rayne and I were trick-or-treating. This year, Rayne is beyond excited to get dressed up and go out, and she’s made it a point to tell me that she really wants her sister to go with her. She’s even picked out matching outfits for them to wear (she wants to be Dora, as a cat, from the movie and she wants Bella to be Boots, as a chicken). 

Unfortunately, there are numerous issues that can come up for us. We want more than anything to allow Bella to join in our beloved traditions during the holidays. For children, there is no greater night than Halloween. I mean, what can be better to a child than dressing up like their favorite superhero or fairy princess and getting free candy?

So, what am I so worried about? Well, there are a few things.

Sensory Overload

There’s spooky Halloween music, hyper, running, yelling children, large groups of people dressed as goblins and witches and zombies and vampires, adults that go all out and decorate their houses like something straight out of a horror movie, people that enjoy jumping out from behind bushes with a ghost face mask on in an attempt to scare the daylights out of you. For typical kids it’s all fun, but for someone like Bella, any one of those things can tip her already fragile senses into overload.

No Fear!

Autistic children have no concept of danger or fear. We've had issues with Bella (as many parents have had with their own kids) of running. When something catches their eye, be it a noise, an object or even something glimmering in the distance, they’ll stop at nothing to get to it. Running into the street, darting in front of a car, running off to join another group or walking up to any adult they see are all serious issues to keep in mind.

Or...Too Much Fear

Some kids are just the opposite and have high levels of anxiety and fear. They can see something that doesn't seem to effect them at all, but then have nightmares about it for weeks later on. Walking up to a strangers house or confronting a total stranger at all is just not something that some can handle.

Strangers and Other People

While you encounter a lot of strangers while out trick-or-treating, you can come into contact with some that aren't so friendly. The ones standing on their porches, shivering just to hand out candy to all the cute little kids, are not the ones I’m talking about. I’m talking about the ones that like to spray shaving cream at you or cover you in fake blood as you walk by. For children who already have an anxiety about social situations and strangers, having something negative happen can hinder them from really enjoying any kind of social interactions in the future. These kinds of impressions last a long time to someone with autism.

Diet Restrictions

There are a lot of parents out there with autistic children who have diet restrictions that mean their kids can’t eat candy (or high sugar treats). It might not make sense to some, but even though some kids might not be able to enjoy the spoils of their night out, we, as their parents, still want them to be able to enjoy the activity and the tradition of Halloween. A solution for this is to get home and “trade” the candy for a new toy that you know your child will love! Also, if it’s just too much of a good thing that adversely effects your child, pull out a portioned amount they can have everyday, every other day or only as a special treat during the week.

So, even though I don’t know all the answers, I have come up with a few ways to help Bella enjoy Halloween anyway.

Start Preparing Early

We started about a month ago, reading stories about Halloween and watching Halloween themed children’s movies. We've gone over, again and again, what Halloween means (in terms of children and trick-or-treating that is). We've made sure to have her try on costumes to make sure that she agrees with the material. Most costumes are made with an itchy material that she refuses to wear and masks are totally out of the question. Autistic children don’t really understand the concept of “make believe” and “pretend” so the whole concept of dressing up as someone or something else is not a priority to her. What we’ll most likely end up doing is dressing her in a warm Halloween themed outfit that she won’t mind wearing but still keeps her in the spirit of Halloween.

Outside Safety

Now, I don’t have to list all the rules for being safe outside, because parents already know them, but here are a few tips to make sure everyone stays safe while out at night trick-or-treating. First, if you have a runner like I do, consider using a child harness. When it gets dark, your child can dart off and be lost in the crowds in a heartbeat. People might make snide remarks or point and laugh, but the way I've always seen it is that my child's safety is far more important than the opinions of strangers. If you’d rather not and you don’t have to worry too much about your child running, use glow sticks. They are fun to wear and won’t really seem out of place on Halloween night. Always remember to use a “name book” or a “pocket ID card” as well. Worst case scenario, your child does stray and get lost, if someone were to run into them, they can get their name and an emergency number to call. (especially good to use for non-verbal children)

Plan Your Route

Take some time before you go out to plan your route. If you can, plan your route around friends houses and ask them if you can stop in for some apple cider or something. It will give your child a few minutes to regroup and relax before heading back out. Also, keep it simple. Maybe hit a few blocks and call it a night. Too long and your child might start to get a little too anxious. Also, see if a family member wouldn't mind driving down the roads with you so that you’ll always have a warm place to retreat to in case your child starts to meltdown or beings stimming a lot.

Use a Wagon

If you’re child has muscular issues or skeletal problems (Bella has issues with her lower legs), try using a wagon. The less stress on your child, the less stress the whole night will be.

Stay Home

If things just don’t seem to be working in favor of trick-or-treating, just consider staying home. There are lots of things you can do at home with your child that will still help them enjoy Halloween without putting them through the stress and anxiety of going out. If you have glue sticks and construction paper, you’re already in store for a good time. Consider handing out candy if your child doesn't mind the social interaction of it. You can split the work if you have other kids that want to go out. Ask a friend or relative if your child can join them or have the hubby take the other kids out while you stay home and create your own Halloween traditions. When the hubby and kids come back, do something as a family to celebrate Halloween together. Whatever you do, don’t force them to participate. Halloween is only fun if everyone is enjoying themselves. I love Halloween and I’ll admit that I’ll be a little bummed if Bella just isn't into it, but what is the fun of celebrating a holiday if the whole family isn't doing something they enjoy? Forcing them to wear an uncomfortable costume and interacting with social situations that scare them or cause them anxiety isn't going to be fun for anyone involved.

Decorate to Celebrate

If you know ahead of time that going out isn't going to work, one of the easiest ways to celebrate Halloween is to decorate the inside and outside of your home. Really go all out and try to do as many things as you can that your child can help with. Homemade decorations are always easy and fun and your child will love to walk around the house each day seeing things that they've created.

Nowhere is it written in stone that you have to follow the common traditions of the holidays. So, use the holidays as a time to create new, special traditions with your family. Last Easter, we realized that the established and well known “Easter Egg Hunt” just wasn't going to work for our child... so, instead, we colored and decorated eggs and then hid them in the woods near our house so the Easter Bunny could find them. Rayne got to do the more traditional Easter egg hunt, but also really loved our new family tradition of hiding the eggs with her sister. Everyone was happy AND we created a new tradition our family could enjoy celebrating together.

Have a wonderful Halloween!

Arts and Crafts – 8 great ideas for children with autism (and typical kids too!)

Some of the only times I can get Bella to sit still with me is when we do crafts together. These are some easy, cheap crafts I've come across over the last year or so that are not only easy and fun, but help with common issues in autistic children like fine motor skills and sensory issues. These crafts can be done with neuro-typical siblings as well. (Or, if you don’t have an autistic child, these crafts are still fun to do together).

#1. Sensory Glitter Bottle
What you’ll need:
Soda bottle or other clear empty bottle
Food coloring or colored glitter
Baby oil
Little trinkets or small objects

One of the easiest craft ideas you can do with a child who has autism is a simple “sensory glitter bottle”. Fill the bottle 3/4’s of the way up with water and fill the rest with baby oil. Leave some space for other floating objects like colored bouncy balls, letter tiles or small gumball prizes. Add glitter or food coloring and glue the top on.

These are two "sensory bottles" that Bella and I made together.

#2. Edible Finger Paint
What you’ll need:
Vanilla pudding (single serving cups work great)
Food coloring

Not only is this a safe, non-toxic way to get them painting, it helps with hand eye coordination and color identification. All you do is mix vanilla pudding with a few drops of food coloring. Ta-Da, instant finger paint that’s also edible. Perfect for kids, like mine, who tend to want to taste and mouth everything they touch.

Click here for more edible finger paint recipes.

#3 Paint With Ice
What you’ll need:
Tempera Paint
Ice Tray
Tin Foil
Craft Sticks

Another easy-peasy painting trick, (that’s a little less edible) is to mix liquid tempera paint with water, pour it into an ice tray and stick a Popsicle stick in it. It will freeze and the effect you can get from painting with them as they melt is pretty neat. An easy way to keep the sticks standing while it freezes is to put some tin foil on the top and poke the sticks through it.

Picture is from http://www.education.com

#4 Crayon Resists
What you’ll need:
Poster Board or Paper
Crayons
Paint

Have your little artist draw a picture with light colored crayons, pressing down hard. After they are done, paint over the picture with black or dark paint. Where they drew their picture will resist the paint making for a pretty cool piece of art.

Click here for full instructions and more examples

#5 Matching Games
What you’ll need:
Anything you can use to creating pairs of matching objects.
Use the lids of baby food jars, two Popsicle sticks, index cards etc. Draw matching objects on pairs of cards for your child to color in. Then you can play with them. Flip them all over and take turns trying to match the pairs.

Magnetic refrigerator magnets stick right to baby food jar lids and make for easy matching games. Also, click here for free printables for matching games.

#6 Buried Treasure
What you’ll need:
A sandbox with sand (or sand in a Tupperware tub)
Some of your child's favorite small toys

Simple… bury the toys in the sand and then help your child dig for the “buried treasure”. If your child has a habit of eating the sand, you can scale this down and use “glass gems”. They are fairly cheap at most dollar stores. Pour all the gems into a Tupperware container and “bury” small things like dice or small toys. Bella enjoys this version because the gems feel nice on her hands and it’s smaller so it’s not so overwhelming. (Less of a distraction then a giant sandbox to play with)

#7 Fine motor skills games
What you’ll need:
Depending on which activity you want to do…

Put uncooked spaghetti noodles in a wad of play dough to keep it standing. Hand your child a pile of Cheerios and help them slide the Cheerios onto the noodle.

OR

Take a bottle filled with water, a spoon and some marbles, set them up on a table and guide your child to scoop up the marble with the spoon, carefully “pouring” it into the opening of the bottle. These two activities can help greatly with fine motor skills and hand eye coordination. The Cheerios game is also fun because afterwards, your child can snack on the Cheerios.

#8 Edible Necklaces
What you’ll need:
Red Vines and Fruit Loops
This is one of Bella’s favorites. You get to make beautiful edible jewelry with your child by stringing fruit loops on a piece of red vine licorice. Then, have an even grander time eating them! A great project to help with hand eye coordination and fine motor skills.

Take into consideration the skill level of your child. Doing these activities together or with siblings is a great way to get everyone involved. While most will just see them as fun things to do, each of these activities can help improve fine motor skills, hand eye coordination, can help with sensory issues (touch, taste and texture) and can help engage your child, improving eye contact and personal bonding. As always, supervision is always required, especially for those who have children who like to mouth objects or don’t always follow safety rules.

Have fun!!!

It's Officially Official.

On October 5th, we attended our much anticipated appointment at the Kirch Developmental Services Center at Strong Memorial Hospital. This appointment came after nearly 10 months of waiting, so I made sure I came armed with my big two inch three ring binder that contains every piece of paper I've ever received regarding Bella.

The wait wasn't long but I could notice Bella getting anxious. The waiting room was full of other kids, some with the same issues as her, others that didn't but were still being quite loud. Getting her blood pressure taken wasn't something I’d enjoy doing again anytime soon. The lady doing it didn't seem to have much patience, especially for someone who works with children. Bella’s blood pressure was quite high, but it was obviously because she was so worked up. Once we got into the room where the tests would commence, the toys distracted her and she calmed down.

I wish that I could write the names of the two amazing doctors that evaluated her, but I forgot to ask for their permission and for the sake of privacy, I’ll simply refer to them as Dr. M(ale) and Dr. F(emale).

Dr. F came in first. She did all the basic tests and took all our information. She asked a lot of questions. She didn't get mad or irritated when Bella kept flipping the light switch on and off, or even when she began drumming on her keyboard, which accidentally crashed her computer for about 15 minutes. I felt awful, but she assured me that it wasn't even the worst thing that’s happened to her.

Dr. M came in, towering well above Bella which seemed to make her a little nervous. He got down on the floor with her (all 6’ 3’’ of him) so she’d feel more comfortable. Together the doctors spent the next two hours evaluating every aspect of her development and assessing her skill set. There were many things that Bella didn't cooperate on, but she showed a great interest in music and numbers.

Now, even though we’d already been given a preliminary diagnosis, hearing them tell me her official one was still hard. I guess there’d always been this tiny voice in the back of my head that keeps saying “maybe she doesn't have autism, maybe it’s something else”… something that, as her mother, I’d always held on to.

They said “Your daughter has moderate autism with sensory integration dysfunction.” While I wasn't surprised by the fact that she has autism, I was a little shocked to hear the word “moderate”. I always thought that she was high functioning and I was told that while she is excellent in most areas, there are three basic areas they focus on to determine the level of autism a child has. Speech, social interaction and repetitive behavior. Bella is pretty extreme in all three.

We were given some good news though. Dr. F was surprised at how affectionate Bella was. She said that most autistic children avoid affection at all costs. To see Bella come to me during her testing to “check-in”, give me hugs and even a kiss or two, was something she said she’d never seen before. Dr. M told me that the percentage of autistic children who show affection is rated somewhere around 5% (much lower than the 30% I read about). The fact that Bella shows us the affection that she does, really does make the whole situation easier for us to deal with. I just think that it would be much harder for us if she didn't.

We were also told that because we got her into classes so early on, we gave her a great advantage. To know that we’re doing everything we can to help her right now was a great thing to hear and it made me feel a lot better.

So, even though she now has this official diagnosis, I realize that she’s still the same little girl she was before this appointment. Now, we just know how to help her a little bit better.

Now, we can begin the next part of this journey. Finding her classes, therapies and programs that are more suited to her specific needs, with teachers that are trained to work with autistic children of her degree.

As always, we’re just prepared to expect the unexpected.