A Way To Give Back!

The Livingston County Head Start Program has done so much for Isabella and Nikolas with their autism, that I wanted to share this with you as a way to give back to the program. 

Little Niko is selling Yankee Candles to raise money for Head Start. The candles are being sold at a discounted price and there are tons to choose from. At least 70 items are under $15!!

If you wanted to stock up, or maybe grab something for yourself, or as a gift to give, now is the chance.

Follow this link to go to Nikolas' fundraising page. Browse their online catalog and snap up some great deals!

Niko's Yankee Candle Fundraising Page

Use this information to make sure Niko and his group get credit for the donations.

Group Number: 990047026
Seller Name: Nikolas Panipinto 
Seller ID: Nikolas48
Sale ends: March 1st, 2017

Head Start helps prepare children for Kindergarten, and helps children with disabilities, like mine. 

A POST SIX MONTHS IN THE MAKING...

I know it's been awhile since I've posted- but I'm back with some amazing news to share. So I hope this makes up for slacking a bit here.

See, my little bug has a more severe case of autism than my little butterfly does. He will be four years old in the beginning of February, and he is still considered "non-verbal". He uses speech, but usually only when he's repeating someone. That is why his video is so amazing.

He's leading the charge!!!

Nikolas counting from one to ten (and throwing an adorable twelve in there at the end).

I titled this post "Six Months in the Making" because we've been working on letters and numbers for the better part of the last six months. For the longest time, he would only repeat the numbers after I, or his teachers, said it. Well, last night, while singing our "number song", he started taking the lead. Thankfully, I had my phone handy and managed to capture the whole glorious experience on video!

I'm not sure if words can express just how proud/happy/excited/thrilled I was/am to share this today!

That face makes my heart smile!

Stay tuned: the next few posts will include another Arts & Crafts post, an updated Graphics Share (since Autism Awareness Month/Day is coming soon), an edible science experiment post and, as usual, updates on the trials, rewards, tribulations and thrills of living life the autism way! 

As always, thanks for reading!

Words On The Page…

          It’s been six months and we’re finally at the last stage of setting up Niko’s Kirch appointment at the Kirch Developmental Services Center. Yes, setting up. Meaning, we haven’t actually gotten an appointment, but we’re one step closer to that now. The last step is having his teachers and therapists fill out some paperwork that voices their personal concerns and also gives the Kirch evaluators a written sneak peek into his behaviors in the classroom. 

It’s hard to see your child’s overall development written out so blatantly. Nikolas is a great kid and he’s very sweet, but seeing his downfalls on the page, along with his shortcomings was a real awakening for me. I expected him to start therapy and just start improving, the way his sister did, but it seems that Niko falls a little farther down on the spectrum than Isabella. 

As of right now, Nikolas is 2 1/2 years old. His primary area(s) of concern fall under pretty much every category. 

He has sensory issues, and seems unaware of his surroundings. He appears not to hear who is speaking and he doesn’t respond to his name. He’s non-verbal, having not spoken a single word to this point. While he does babble, it’s not progressive, meaning, it doesn’t seem to be in an attempt to make an actual word. 

When he’s left alone, he’s in a perpetual state of wander. He never stays in one spot for too long, he needs constant supervision to ensure his safety and when they do group activities in class, he needs constant and continued re-direction. He doesn’t play functionally with toys and doesn’t voluntarily make himself part of groups or interact with peers. 

When he does interact with toys, he stims. He’ll constantly spin the wheels of a toy car, or bang a toy against a desk and even after being shown how to use the toy for it’s intended purpose, he goes back to what he was doing before. 

While in his constant state of movement, he stims. Rocking, jumping, spinning in circles, finger flapping, ear flicking, walking on this toes, even with shoes on and something we call the squat-bounce; where he’ll squat down, but somehow manage to bounce around the room in that position.  

With all of that said, there are few rays of sunshine here. We’ve found out that his response to music is amazing. It can instantly calm him down when he’s feeling overwhelmed or frustrated and it’s really the only thing that can get him to stop moving/roaming around, even if it is for short periods of time. The best part of music, however, is that it makes him smile. 

Being honest though, the only real progress he’s made so far, is that he’s now able to sit still in his chair long enough to eat his breakfast at school. We’re still working on this one at home. 

It’s discouraging sometimes when I think about what’s to come and sometimes just the idea of it all is stressful. I mean, Bella has made incredible progress but she’s still quite the handful at times and while I may be jumping the gun, I can’t help but wonder what Niko will be like in the future if he doesn’t make the same progress as she did. 

Once this paperwork is sent off to the proper places, someone at Kirch will take ALL the paperwork they've received over the last six months, hand it off to  a group of evaluators and therapist and then we'll get a call to finally set up the appointment for a formal and official evaluation that, no doubt in my mind will result in a diagnosis of moderate to severe, non-verbal autism with sensory integration disorder (or a sensory processing disorder). With that, we can get him ALL the therapy he needs AND qualify for some at home therapy and therapy equipment that I hope will help as well.

I have to keep reminding myself that the kind of progress we're looking for doesn't happen in weeks or months. It takes years... and that, I have high hopes for.

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. 

Step 1: The In-Home Evaluation

In Home Evaluation

The great thing about an in-home visit is that they get to see your child behave the way they normally would, in their own home and in their own familiar environment.

Nikolas had his in-home evaluation today and we were visited by an occupational, physical and speech therapist. The entire evaluation lasted about an hour and a half.

They tested an array of things:

Fine and gross motor skills

Adaptive behavior

Social behavior

Speech and communication skills

Language skills and

Sensory issues

Not surprisingly, Nikolas has his strong points, which are very strong, and he has his weak points, which unfortunately, are very weak. 

The easiest way to sum it all up is just to say that anything over a 1.5 is considered ‘significantly’ behind. Nikolas scored an average of 2.67 in all but two categories. In adaptive behavior, he scored a 3.0 and in his social skills and behavior he scored a 1.87. 

He was also evaluated for sensory issues. He has no body awareness and doesn’t respond the way most typical children would to sights and sounds. While I’m not surprised by these results, it doesn’t stop me, as a mother, from letting it get to me a little. 

What now?

Well, now, we take the scores he received and send them off to the Kirsch Center, along with the parents questionnaire and the doctors referral. While it’s still going to be a few months before he gets into Kirsch, he will be able to start receiving services from Early Intervention and Kidstart. If it’s anything like Isabella, when she started, then he’ll go for half-days and get a combination of one-on-one therapies with a speech, occupational and physical therapist. 

Again, much like Bella, he was seen as early as he possibly could have been, since most Kidstart programs will only allow a child two years and older to participate. Since Nikolas is turning two just one day shy of three weeks, they’re going to let him start as soon as all the paperwork is filled out and signed. 

If you are concerned that your child, or a child you know may be showing signs of autism or a sensory processing disorder; there are ways to either confirm or ease your worries. 

M-CHAT stands for Modified Checklist for Autism in Toddlers. It’s best used for children over the age of 12 months. While it’s not a definitive testing method, it can give you a better idea of what to look for, how many “red flags” your child is showing and whether or not you should seek assistance. 

Online, interactive M-CHAT test

Early Intervention is a great first step in getting the help your child might need. Early Intervention rules differ from state to state. 

Early Intervention by State

Kidstart/Headstart is an exceptional program that offers services for special needs children as well as neurotypical kids. They have Pre-K and daycare as well as evaluation services and trained therapists. 

The local Kidstart/Headstart program is free for those that qualify and offers services to those who, otherwise, couldn't afford it. Put it this way; the average price, per MONTH for a special needs child who needs speech, occupation and physical therapy daily averages out to about $4,250 per child. Without the services a place like this offers, most children who NEED therapy would never be able to get it. 

Lehman Center/Main Office

5871 Groveland Station Road, Mt. Morris, NY

Main Number (585) 658-4023

Day Care: Ext. 4409

Director's Office: Ext. 4321

Headstart Services by State

The Kirch Developmental Services Center is located inside the Golisano Children's wing of the University of Rochester Medical Center in Rochester, NY. It is one of the only places in Western New York where you can get an official diagnosis for autism. While it might not seem important to have this label for your child, with this diagnosis, your child qualifies for services that otherwise wouldn't be provided. State grants and subsidies as well as SSI and help with at home therapy equipment. Having that diagnosis will also help with things like enforcing the Children with Disabilities Act. For example: A landlord that won't let you keep a therapy/companion animal or tells you that you can't make simple modifications to a home to make your child's quality of life better. 

Since it's the only place that can do this, the waiting list is sometimes very long. 

All in all, today went pretty much exactly the way I thought it would. Niko wooing the ladies with his charming laugh and sweet toothy smile, and the therapist assuring me that they will do everything they can to get him into the services he needs as soon as possible. Unfortunately, the thing you, as a parent, end up doing the most is waiting. So now, we wait.

Ready For Round 2

Ready For Round 2

I’ve decided, that since I started blogging about my experience with Bella after she was diagnosed, that this time around, I’d tell Niko’s story from the very start. It’s not a surprise to me that he has autism. I’ve suspected it since he was six months old.

He wasn’t babbling, or making any noise besides crying. He had limited eye contact and was off in his ‘own world’ most of the time. He would respond to his name, every now and then, but most of the time, it took a loud noise to get his attention. As he got older, I grew more and more convinced that he was autistic. 

Now, he’s almost two and has yet to say his first ‘real words’. He has no communication skills, doesn’t like being held, but unlike Bella, who cried a lot, he’s full of smiles and laughter. Everything makes him laugh, even if we can’t figure out why. 

This time around, I skipped the doctors appointments. Last time, they just kept telling me that ‘she’d grow out of it’ and it added nearly three months onto the time it took to really get her evaluated. So, I went straight to the source, and the only people that can really help Niko; I called the Kirsch Center at Strong hospital and Early Intervention. 

The Kirsch Center has a long waiting list, but while I wait, I know that I can get him into the therapies he needs. From Kirsch, I got the paperwork needed to get him an appointment. I was able to get them to email me the papers I needed; A parents questionnaire, a doctors referral and the early intervention forms. When I called Early Intervention, they were able to send someone out to the house within days to get the process started. 

His official in home evaluation is on the 21st. They’ll be sending out a pediatric pathologist, a physical therapist, speech therapist and an occupational therapist to evaluate him and decide which therapies he’d most benefit from. At this point, I’m pretty sure he’ll qualify and benefit from all three. 

So, for the next few months, I’ll be using the blog to document the process my son will be going through, from the preliminary evaluations to the Kirsch, to his first days of therapy. I’ve seen the amazing progress my daughter has made and I have high hopes that these programs will help my son as well. 

Isabella (on the left) and Nikolas (on the right) were born on the same say, three years and one hour apart. They were the only ones born with hair (and lots of it). As their pictures hang on the wall, most people who see them at the same age can't tell them apart. Sometimes when I go through their baby pictures, I can't even tell them apart. 

Sweet Nikolas will be 2 years old in just under 4 weeks. His smile can light up a room and his laugh is one of the greatest sounds I've ever heard. 

CodeName: Houdini

CodeName: Houdini 

Regular seat belt? Just a few minutes.

Five point harness? A little over an hour.

Modified five point harness? Less than an hour.

So, how do you keep a child in their safety seat when they can watch you strap them in once and then completely reverse your work in a matter of minutes? Answer: You can't.

Our little butterfly has definitely showed us that when she puts her mind to something, there is no stopping her. She's almost too smart for her own good. In a few cases, with trying to come up with creative ways to stop her from getting out of her seat, it's taken us longer to strap her in, then it did for her to get out.

At first glance it can all seem pretty harmless. She stands at the back of the bus, waving to the cars behind her, smiling and giggling when they wave back. Of course, the reality is, it's dangerous. If there was ever an accident, she'd get seriously injured... and then there is the issue with her popping open the emergency hatch. 

Our last resort, before the last-last resort was to try a contraption that I wasn't really all that comfortable with. I kept telling myself that it was for her safety, and in the end that's all that really matters. Which is true, but strapping her into this... thing... that almost looks like a sleeveless straitjacket, just made me weary. There are zippers and hooks and clips and straps and on the seat of the bus,  there are four points where she gets hooked in. She can't move to get out, but she also can't move at all. 

She seemed to like the actual harness. It was snug, and she likes things that 'hug' her, but once strapped in, her inability to move, even a little, wasn't something she was okay with, but... we gave it a try. 

This thing is said to be 'inescapable', so we had high hopes that this would teach her that she's not allowed to get up and run around the bus, but the first day home, she'd gotten the bottom two buckles undone. By the second day, she's gotten out entirely, going so far as to figure out how to unzip the harness, that was zipped IN THE BACK. 

I still don't know how she did it.

A common misconception when it comes to children with autism is that they're some how less intelligent, or they're 'slow'. Well, ask any parent who has their own little Houdini if they'd agree with those statements. They'd give you a loud, resounding 'NO'. 

Baby gates, with the most intricate locking systems are unlocked before you get downstairs. Window and door alarms are turned off with the long arm of a broom, or anything else they find to flip the switch. Seat belts, restraints... whatever you want to call them. Useless.

I've seen Bella open a door, protected with top notch doorknob covers faster then most people can open them without the cover! She seems to figure out how to get around child safety measures faster then the adults can.

So... our last-last resort is to add another aide to her list of helpers. A bus aide, whose sole job will be to ride the bus to and from school with her just to make sure she stays in her seat.

While we, her parents, and her teachers, and the school and even the DOT are concerned with her safety, the only thing Miss Bella has to say about it? She hates the harness cause she can't wave to her 'friends'.

Here's Miss Bella showing off her new bus harness. She enjoyed wearing it, until we actually had to put her on the bus with it. It took her two days to figure out how to escape from the 'inescapable harness'. 

Entomophobia: A very unexpected issue

Imagine sitting on the playground, at school, minding your own business when suddenly a large flying bug buzzes by. It then circles around, hitting you in the face. You swat at it, but it doesn't go away, just keeps flying around your head. Eventually, someone comes to help you and they finally get it to go away.

Now, to most people, it would be nothing more than an annoying incident, easily forgotten.

Unfortunately, this happened to Bella, about two months ago, and since that day, she has developed an intense fear of ALL bugs.

Entomophobia, or insectophobia, is defined by an irrational fear of bugs. Big, small, dangerous or totally benign, it makes no difference.

In Bella’s eyes, they are all the same and they are all just as scary. It went from a mild fear where she’d just try to get away from them, to a full on breakdown where she is literally paralyzed with fear, unable to move from where she’s standing. She covers her eyes and calls for help. It has also gone from her being afraid of bugs, to her being afraid of anything she perceives to be a bug. A dot of dirt on the ground or a small smudge on the floor; anything really, that reminds her of a bug.

At a complete and total loss on what to do, (we've been here before), I started doing some research. I found VERY little, if any real information that would help us to help her to move on from this. A lot of what I found said that these types of fears usually start from something harmless and in some cases, the child never truly gets over it.

That was not acceptable to me. See, we’re a family that loves the outdoors. We love to take the kids hiking, and on short trips through the woods. We love going to the park where there is a creek they can play in. We want our kids to get dirty, play in the mud and explore things. Now that the weather is finally warming up, we’re outside a lot, but with warm weather, comes more and more bugs.

The other day, we didn't even make it off the porch.

It’s heartbreaking; watching your child, who’s taken so many positive steps and made so much progress, seemingly regress at the drop of a hat.

This is not something that we expected or could have ever planned for, so along with her teachers and her one-on-one aide, we came up with a few things that we hope will work to help her overcome this crippling fear.

1. It’s no big deal. 

When she sees a bug and reacts to it, we try not to get too wound up too. It can be hard to act nonchalantly when she’s crying and clinging to you for dear life, however. We try to say things like “Oh, it’s just a bug” or when we shoo it away, we’ll say “Bye-bye bug!”

2.  Let her take control.

When we see a bug before she does, we call her over to see it. I know it might sound counterproductive, but for some reason, when she gets a heads up, it seems to help her feel more in control. “Look, Bella, a bug!” (said excitedly) seems to help calm her nerves a bit. Then, sometimes, she’ll come over and shoo it away herself. She seems very proud of herself and I think that really helps.

3.  Fake bugs.

The Dollar Tree sells packages of fake bugs. At school and at home, we've taken to hiding these fake bugs, in plain sight, and then help guide her through what happens when she stumbles upon one. She’s afraid at first, but we’ll usually do either #1 or #2 and when she feels ready, she’ll either ‘squash it’ (put a tissue over it) or she’ll grab it and toss it in the “Bug can” (The bug can is an empty coffee can decorated with construction paper that says ‘bugs’ on the front. This is where she puts all the fake bugs she finds. At the end of the day, we count the bugs and she gets a reward for being so brave and for ‘catching’them.)

4.  Kill it.

Sometimes, depending on what kind of bug it is, we just have to kill it. It’s literally the only way she can ‘move on’. (I find this hard to do when we're outside, since this is where the bugs live. They aren't really doing anything wrong. When we're in our house, however, it's a different story. Being allergic to bees, and having a high probability that my kids are too, I can't really risk them being stung by a bee that finds its way inside.)

So far, catching the fake bugs has been working better than anything else has. She seems to enjoy the ‘game’ of it and it puts her more at ease when she runs into real ones. Still, even after employing these tactics for a little over two weeks, most of the time she’ll still freeze up and shut down after spotting a bug somewhere.

Some of her doctors have stated that situations like these only get worse and medications are the only things that help. Since she’s only three years old, we’d really like to try other methods before putting her on any kind of medication. However, if it get worse or stays bad enough, we will consider it.

Our motto has always been “Expect the unexpected” but even I have to admit that THIS was not something I ever thought about. Sometimes, I think the more important thing is that we, as her parents, handle this well and hopefully she’ll learn to handle it better too.

Wish us luck. I think we might need it.

 Advice, tips or suggestions are ALWAYS welcome! 

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.

A Year's Worth of "Please Don't Say That"

Please, Don't Say That - A Year's Worth of Questions and Comments That Never Go Away

• “She still isn't talking?”

~No. She’s not. There is a chance that she may never really talk enough to carry out full conversations, but she’s made tremendous progress in her speech classes.

• “I watched that Temple Grandin movie, I get it.”

~No. When you've met/seen one autistic person, you've met/seen ONE autistic person.

• “Why do you let her do that?”

~To say that I let her do anything feels insulting whether or not the person means it to be. There are many things Bella does that we’re not sure that even she has much control over.

• “I bet she could do _________ if she really wanted to.”

~My daughter has made amazing progress over the last year and I know quite certain that she strives everyday to push forward. There are also things I know that she wants to do that she just can’t, yet.

• “She won’t look at me when I talk to her, that’s pretty rude.”

~ Says the total stranger. I know many typical kids that don’t like to talk or make eye contact with complete strangers.

• “She’ll grow out of it, she’s just stubborn.”
  “She just needs a good spanking!”

~In my opinion and experience, spanking does nothing to reinforce positive behavior. Autistic or not, when people say this to us, they usually don’t have their own kids, thankfully.

• “You’re not trying hard enough to get her to do _______.”

~Please. Most of our days are dedicated to helping our daughter gain new skills and keep from regressing from skills she’s picked up on. To have someone say this feels like a slap in the face.

• “At least she can _______.”

~Yes, we are very thankful that our daughter can do the things she can do but at the same time we mourn the simple things that she can’t. Like talk.

• “Jenny McCarthy cured her kid. Why don’t you just do that?”

~I think I've made my opinions on this woman pretty clear for the most part. Her son never had autism. What she did to help him is great, but it's not effective for autistic children. Not only that, but she’s personally made millions of parents terrified to vaccinate their kids against deadly diseases and illnesses. In my opinion she’s done more harm than good for vaccinations and autism.

• “Why do you take her out if she might have a meltdown?”

~Why do you take your child with you if there is a chance they might cry or holler for something while you’re at the store? Why do you take your kid to the park if there is chance they might fall and get hurt? There is no real difference here. She’s our child. She goes where we go.

• “She looked me in the eye. She can’t have autism.”

~ We've worked for nearly a year on Bella’s issues with eye contact and there are many times when she still doesn't do it. If Bella makes eye contact with you, you should consider that a great compliment. It’s most likely because she finds your facial features symmetrical and pleasing. She actually loves to study faces, but when you start to talk to her, she’ll turn away.

• “It’s not that hard, just ____________.”

~Said, most of the time, by parents who do NOT have a child with autism.

• “I can’t believe you had more kids!”

~People think that the risk of having more than one child with autism is extremely high and very likely when in fact, there is only about a 5% chance subsequent siblings will be effected.

• “She’s not potty trained yet?”

~People usually ask this question when they see that she’s wearing a diaper. If she is wearing a diaper, then clearly, she’s not potty trained yet. Like most other things, we're working on it and it's a slow and tedious process. She's up to ten full seconds on the potty and that, to us, is great progress. 

• “You need to put her on some medication!”

~It’s been suggested to us by doctors, family, friends and even one of her therapist, that we put Bella on medication. We just don’t feel comfortable with doing that. She’s only 2 1/2. We don’t know what putting her on any medications are going to do to her and the only way we’d feel totally comfortable doing it is when she gets older and we can tell between her age appropriate behaviors and the behaviors that are triggered by her autism.

• “Are you sure she has autism?”

~Bella has had 27 different evaluations. She’s been monitored by three neurologists, two speech therapists, a physical therapist and an occupational therapist. She’s under the care of a regular care doctor, a pediatric psychologist and a pediatric behaviorist. So, yes. We’re sure.

• “At least you get special treatment everywhere you go.”

~I’m not sure where this assumption started but I wish that it would die. People are under the impression that because Bella has autism, we somehow get special treatment. In reality, most people in public don’t know. We don’t get red carpet and free samples, we get dirty looks, snide comments and a few times we've been asked to leave the store because Bella was crying. Trust me, it’s pretty much the opposite of special treatment.

• “You made up the autism to get attention.”

~Yes, a “family” member accused us of this and all I can say in response is that autism isn't something that I, as a parent, could fake. It would be the child having to fake it and I’m pretty sure an 18 month old can’t fake something like that.

• “What a brat!”
• “She’s just spoiled.”

~Two things that we've heard from family and strangers alike. Granted since family has learned more, they understand much better but strangers who say this are usually insulted that she doesn't respond to their waves of hello. Hint: most kids don’t like strangers anyway.

• “God doesn't give us more than we can handle.”

~I’m not a religious person and I understand the sentiment behind this saying and in order to not offend anyone, I’m going to keep my opinion on this to myself, for now. All I will say is that sometimes it IS more than I can handle. Even if Bella was an only child, there are days that get really bad.

• “Make her come give me a hug/kiss.”

~ We've dealt a lot with family members telling us to make her give them a hug or a kiss and the fact of the matter is, we can’t. She’s not doing it to be mean and trust me, a 2 year old isn't  going to hurt your feelings on purpose, but we aren't going to force her to do something that makes her uncomfortable. Again, in the defense of family, over time, they've learned more about how autism effects her and have come to understand her behavior a lot better.

• “You need to learn to control your kid better.”

~Yes, stranger in the supermarket who’s kid is running through the aisles, yelling at the top of their lungs and knocking packages of toilet paper from the shelves… I need to control my kid who’s sitting a cart, crying because she’s anxious and overstimulated.

• “Don’t cater to her, when she’s hungry enough she’ll eat what you give her!”

~While this might be true for most kids, for Bella it isn't  When Bella refuses to eat, we have to try our best to find something that she will eat. Her vitamin supplements can only do so much. If we left a plate of food in front of her that she doesn't like, the food would give in before she does. It’s not a stubbornness issue, it’s a texture and sensory issue. The way the food feels will literally make her sick.

• “She’ll get tired of screaming and fall asleep eventually.”

~You’d think so, but no. After a lot of trial and error, the only thing that really helps Bella sleep (and stay asleep), is a combination of melatonin and deep body pressure before bedtime. Like the food issue, if we don’t intervene, she’d never go to sleep. Granted I guess after a day or two of not sleeping, she’d pass out from sheer exhaustion, but we’d never want her to get that bad.

• “Is that her actual diagnosis or something you came up with?”

~I always thought this meant, “did you get her evaluated” until one lady accused us of “giving her the diagnosis” ourselves and just kind of going with it. It took a year on a wait list, but Bella has an official diagnosis.

• “…but she’s so pretty.”

~While I appropriate and agree that my daughter is very pretty, I never understand why this is the ‘go-to’ thing to say when people find out that she has autism. It’s like they can’t believe she’s pretty because she’s autistic? Or do they say it to make us feel better, like, “Oh, well at least she’s pretty.” I don’t know.

• “I feel so sorry for you.”

~Please don’t. There are families going through much more hardship than we are. We have a beautiful child who’s happy, healthy (for the most part) and kind. There are people out there everyday struggling to have a child or struggling with a much more devastating illness in their kid. We've learned to live our lives a little differently than others, that’s all.

• “How do you do this everyday?”

~We do what any parent does. We get up everyday with our children’s best interest in mind. We do what we have to do to make sure they stay safe, healthy and happy. We raise our kids and love them unconditionally.

• “Do you get jealous of people with normal kids?”

~There are times when we mourn the child we thought Bella would be, but we’re not jealous of other people or their kids. We have other children and we love them too.

• “Just take the bottle away, she’s too old for that!”
• “I cant’ believe you still let her (drink from bottle/sleep with a blanky)”
• “It’s because she’s a middle child.”

~Most children have a comfort item. We find nothing wrong with that at all. Sometimes I think that people focus too much on the autism and forget that she’s still only a 2 year old. The comfort items will go eventually and for right now, if they help her feel safe and comfortable, what’s the harm?

• “Did you breastfeed? Formula is poison!”
• “Did you bond well when she was born?”

~I breastfed Bella for a few months. She did use formula, not rat poison. As with all my kids, we bonded very well when she was born. Then again, both of these questions are irrelevant considering millions of babies are fed formula and a mere fraction of them develop issues like autism.

• “She doesn't seem retarded.”

~That’s because she’s not. Another widely spread misconception regarding autism is that it’s the same as Down’s Syndrome. While a lot of children with Down’s Syndrome have a form of autism, the same isn't said about children with an ASD. Autism is also NOT a mental illness like some want to think. Autism is a neurological disorder.

• “It’s just a phase.”

~No it’s not.

• “Did you read the latest on how to cure autism?”

~ I've read all of them and even though the prospect of finding a cure is alluring, none of the published “cures” have been proven to actually work. While some treatment options may help some kids, not all children with autism are the same or react the same way to the same treatments. As of right now, there is no cure, even though there are many, many doctors, pharma companies and researchers that would love to take your money and sell you unproven promises. Right now, the best, most effective way to help a child with autism is an early evaluation, therapy and hard work to help them improve. It's not a quick fix like some want, but it is proven to help. 

• “Are you sure it’s not your fault?”

~Having this asked to you after spending months and month working through issues of guilt is like having a hot poker shoved into your eye. It took me a very long time to stop blaming myself and to stop coming up with ways on how it could be my fault. Am I sure that it’s not? No. I only say that because I don’t know WHAT the actual cause is and until I do, anything is possible. I am pretty sure that nothing I did caused my daughter’s autism and I've finally stopped blaming myself for it, but there will always be that tiny little voice in the back of my mind that continues to look around for a reason.

Sometimes these questions can really hit a nerve and sometimes I know that the person asking is just trying to help. Sometimes though, you just want someone to tell you that you're doing a good job.