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What Going To Disney World With My Autistic Son Taught Me About Parenting

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My oldest son, Ross, has autism.  He was diagnosed when he was 3 and is now a happy, thriving 6 year old who just started kindergarten.  Last spring we took my son with autism to Disney World.  My Husband, my boys, my mother and father in law, my sister in law and her husband and I all headed to Orlando to go on a new adventure to Disney World.  This adventure  went far better than I had expected.  Honestly, I had set very low expectations for the trip and especially for how much Ross was going to like it.  I was pleasantly surprised by how engaged my son was and how much he liked Disney World, especially Magic Kingdom and Epcot.  I was also surprised by what I learned as a parent and how it changed how I parent all three of my boys.

It’s Hard To Accept That He Is Different, But I Need To

I think Ross spent 75% of the time in Disney World in his stroller.  Most of that time he had noise cancelling headphones on and Netflix videos were playing through the bluetooth in the headphones for part of that.  BUT, he loved it.  A few years ago I would have prodded him to get out of the stroller and experience the parks the same way my neurotypical boys do.  I would have tried to get him to go on rides or see more movies and he probably would have melted down.  He was actually quite happy sitting in his stroller, looking around, hopping out for the occasional character.  He also became obsessed with trading pins.  This was the perfect activity for him and actually didn’t end up as terribly expensive as I expected.   In the last three years I have had to learn to accept that he will experience things in his own way and that he enjoys things in his own way.  He still talks about how amazing his trip to Disney World was and I’m glad I got over myself and let him decide how he wanted to experience it.

Being a Little Pushy is Ok

On our third day in Disney World the kids, my husband and I had reservations to Chef Mickey’s restaurant at the Contemporary Hotel.  When we got there we discovered that strollers had to be parked outside and there was no way that Ross was getting out of his stroller.  Ross was over stimulated from the parks and on the verge of melting down all the time but was also super excited to have brunch with Mickey.  We were at an impasse.  I had gone up to the desk when we arrived and asked if  strollers were allowed and they said no.  In desperation I asked my husband if we should just go and explain the situation.  I always fear being too pushy or asking too much but he doesn’t fear these things at all.  So he asked if we could bring the stroller for Ross in and explained his situation and they said yes.  My fear of being pushy or of judgement had always stopped Ross from being able to go in to what became his favorite part of Disney.  Note: I later found out you can get a “Stroller as a Wheelchair” pass for Disney and could have avoided the whole situation.

(Sometimes) IDGAF

As Dua Lipa says, “I don’t give a f***”.  Ok, maybe I do a little but I’m trying to care less.  Back to that third day at Disney and we got a table with a wheelchair spot at Chef Mickey’s and all was fine.  Ross doesn’t like many new foods so was totally uninterested in eating.  He sat in his stroller with the hood up and his headphones on.  And people looked and, at least in my head, they judged.   

So I took a deep breath and decided that IDGAF.  This happened more than once in the course of the trip.  From choosing bubbles over characters to melting down when someone cut in the water slide line I decided to take the approach that IDGAF what others thought.  I was going to help my sons have the best vacation possible and not let others bother me.

I Need to Ask For Help

Perhaps the biggest thing I learned at Disney that made me a better parent was that I need to ask for help.  I tend to try to do it all.  Whether it was asking for help from Disney cast members or from my in-laws (they watched the kids several nights so my husband and I could have dinner alone) we could not have made it through Disney without lots of support.  When I got back to the “real world” I tried to remember this lesson and ask for help because it’s definitely a lot easier.

This article was originally entitled “What Going To Disney World With My Autistic Son Taught Me About Special Needs Parenting” but I think all of these parenting lessons I learned taking my son with autism to Disney World apply just as much to my neurotypical children as my son with autism. 

Feel free to reach out to me if you need help navigating Disney World with an autistic son or daughter.  Be sure to check out my article on being an autism mom and grab your free IEP worksheet by signing up for my newsletter below too.

What going To Disney World Taught Me About Parenting

5 Great Books for Parents of Kids with Autism

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Disclosure: Some of the links below are affiliate links, meaning, at no additional cost to you I may earn a commission if you click through and make a purchase.  Thank you for supporting my blog.

My spunky, fun and incredibly intelligent almost 6 year old also has Autism Spectrum Disorder.  I’ve read a fair number of books about autism and related symptoms a these are the five I found the most helpful in learning about the disorder as it pertains to our family.

Autism Spectrum Disorder by Chantal Sicile-Kira

Autism Spectrum Disorder is very much a handbook on autism.  It is a great starting place if you or a love one is newly diagnosed because it defines the main terms, treatments and interventions that are commonly associated with autism.

The Out of Sync Child by Carol Stock

The title of The Out of Sync Child says it is for coping with sensory processing disorder but lots of children and adults on the autism spectrum also have sensory processing issues  This book gives a great explanation of sensory processing and where it can go wrong  It also gives advice on treating sensory problems as well as coping with problems at home and in school.
Books about autism

Bonus Book: The Out of Sync Child Has Fun

The Out of Sync Child Has Fun is an amazing resource for activities that engage and regulate the senses.  It is organized by sense (vestibular, auditory, etc.) and then by sensory-related skills (oral-motor, motor planning, etc.) for easy reference if you are looking to work on a particular skill with your child.  I have used activities from this book regularly with all three kids so it is definitely a resource for parents of neurotypical children as well.
Books about autism

The Explosive Child by Ross Greene

The Explosive Child was a game changer in how I looked at the behaviors of all three of my children.  I started thinking of what i’d previously thought of as behavioral problems as what Greene called, “logging skilss and unsolved problems”.  Starting there I could work on these lagging skills and unsolved problems and solve the behavior.  This is a must read for any parent of a child, autistic or not, that have meltdowns, get frustrated or otherwise “misbehave”….so, pretty much all kids at some point or another.

Books about autism

The Sensory Child Gets Organized

In full disclosure, I’m not very organized and I didn’t really prioritize being organized.  The Sensory Child Get Organized helped me develop realize I needed to prioritize developing organizational system for my son with Autism and gave me practical ideas in how to do it.  This book literally goes room by room and tells you how to create spaces that are ideal for kids with sensory kids.
Books about autism

Thinking in Pictures by Temple Grandin

Thinking in Pictures is an amazing book by an absolutely an amazing woman.  The combination of her scientific knowledge and first person knowledge on autism leads to a fascinating book.  If you read just one first person narrative by someone with autism this should be it.  It really helped me understand what it felt like to be on the autism spectrum.

Books about autism

I hope you find some of these books interesting or helpful! What other books have you found helpful on your journey as a parent of a child with autism?  Let me know in the comments.

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How To Survive The Holidays With Your Special Needs Child

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The holidays can be a stressful time for anyone. Those stresses can be even worse for children with special needs. Here are my tips on how to not just survive, but enjoy the holiday season.

Over Prepare

This is the time or the year for social stories and visual schedules.  My son Ross can become extremely anxious at new or unfamiliar places so we use these and other similar tools.  We also look at pictures of friends and relatives so he remembers they are not new and we look at pictures of holiday locations if they are available. Anything we can do to make events and places seem less unfamiliar we attempt to do.

Bring Everything, Or Close To It

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Beyond Climate Change: Why Greta Thunberg Matters For My Son

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Greta Thunberg is an amazing advocate for climate change. She is well spoken, passionate, knowledgeable, and will hopefully help to lead a worldwide movement to change our laws and policies and curb climate change. But that is not why she is important to my son. My son has a diagnosis of autism spectrum disorder. His diagnostic report reads “he has what used to be called aspergers”. Like my son, Greta Thunberg also has aspergers.

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Six Practical Tips for IEP Meetings

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IEP meetings are important times to bring your child’s team members together to discuss progress and make changes when necessary.  They can also be overwhelming, frustrating and stressful. Here are just a few of my tips that help lead to smooth meetings.

Document Everything, and Bring All the Documents

If you don’t already have a place that all documents from the school and independent providers go get one now.  Some people use a binder or folder for this purpose. Personally I scan everything into my computer and store it on google drive and then keep the paper copies in a accordion file folder.  Whatever system you use EVERYTHING should go into it and then be brought into the meeting. I have referenced e-mails from private therapist’s school visits in meetings and I was happy they were in my accordion folder (because, honestly, I have a terrible memory).

The other half of this tip is to document everything, and I mean EVERYTHING (sense a theme?).  If a conversation can be done via e-mail instead of by phone I do it by e-mail becuase I then have a copy to reference.  Plus, the minute I get on the phone my kids all “need” me inevitably. I’m not saying phone conversations don’t have a place but often things are more clear in e-mail plus you can go back to it later. I also send a summary e-mail to the administrators/ teachers at the IEP meetings afterwards.  It’s just a couple sentence summary of what I thought happened and any action steps for myself or them.

Do Everything That You Can Ahead of Time

Last spring the team sent me the draft goals for the next year and I really wanted to add a speech articulation goal.  I’m a people pleaser and don’t like to “bother” people so I figured I’d bring it up at a meeting. My husband urged me to e-mail them now.  I eventually did and it turned out the team had been considering an articulation goal (and had already done the testing for a baseline) but decided it was too many goals.  They went ahead and wrote and sent over the goal.

In the meeting the speech therapist thanked me for mentioning it ahead of time.  She said it was easier to write the goal in her office then a meeting. This had never really occured to me but I now try to iron out any known issues before the meeting.

Bring Someone Else With You

I think it’s always helpful at any major meeting (educational, health or other) to have a second person.  They may see different points or issues at the meeting and will help you remember what happened. Of course, chose your person wisely.  Many people chose to bring an educational advocate or a spouse. I bring my mother-in-law. This is obviously not the choice for everyone but my mother-in-law used to be a special education teacher and administrator so she is good at making sure a goal is measurable and an accomodation is acceptable.

Speak Special Education Language

It’s important to be able to understand the terminology that will be used in the meeting and in the paperwork.  A great place to start is by reviewing this Special Education Dictionary. You don’t need to memorize it but familiarizing yourself with the terms is useful.  If there is any terminology I don’t understand I jot it down and then ask when the person speaking ends.

Take Care of yourself

This one seems obvious enough but I’m a “hot mess mom” so I’m frantically flat ironing my hair and then sneaking out before my twins schmutz my shirt.   I have riffled through my car looking for my emergency almonds having forgotten to eat breakfast at pretty much every meeting and then there was the time I forgot to pee. The IEP meeting was at 8:30 so it was a hustle out of the house.  The kids were up at some crazily early hour so I’d been chugging coffee for hours. I did my put on the heels and cute top and sneak out of the house thing and arrived at the meeting. I’m a compulsively early person so I was early. Really early because when I get anxious I get earlier.  So as I sat in my car digging for almonds I realized I really had to pee. I knew the receptionist at the school was going to give me grief about getting there early because she never lets me in before 8:29 and I really didn’t want to admit to being there at 8:10. The good part about being really early is I actually drove home, peed and drove back.  Moral of the story: eat breakfast, drink a sensible amount of coffee, don’t stress and be overly early and definitely don’t forget to pee.

Know Your Rights

You do not have to sign anything at the IEP meeting.  If you’re sure it is correct then sign it at the meeting but do not feel pressured to.  You can take it home, discuss it with your family, ponder it in the shower, and then sign it.  A great resource for any questions about the legal side of the IEP process is WrightLaw and hiring an educational advocate (or attorney) is another option.  My husband’s knee jerk reaction whenever the school worries me (they’ve never actually said no to anything) is that he wants to threaten to sue them. Why he has this reaction will need to be a different blog post but I do not recommend telling a district this.  However, it is still very important to know what rights you have just in case you need to use them.

What’s next?

Good luck at your IEP meeting!  I have a free IEP worksheet (sign up below) to help guide you. Please contact me if you have any questions and be sure to check out my article with my top books for parents of kids with autism.

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What Not To Say to the Parent of a Child With Autism

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I am extremely open about my six year old son’s autism.  Part of the reason is I find it is easier.  Also I find that if I’m open about being the parent of a child with autism people can hopefully understand his differences and be supportive.  I I am also open about it in order to support others.  Often when my son’s autism comes up in conversation people will then feel comfortable telling me about their children’s struggles.  We can share resources and support then.  The problem is people say some weird stuff sometimes. Sometimes it’s offensive.  Other times it’s confusing.  I don’t think people usually mean to say something weird but they often don’t have a lot of experience with children who are not neurotypical and don’t know what the right things to say are.  Here’s my rundown of some of the stranger things that I’ve been told.

Your Child Doesn’t Look Autistic

What does autism look like?  My son looks like everyan almost seven year old boy.  He doesn’t look different than the other kids in his class.  The implication is usually that he doesn’t “act autistic”.  He’s not stimming (usually) and he talks (a lot).  He’s not the stereotype that people think a child with autism will “look” like so they are surprised.  But it really should not be that surprising.

You’re So Great To Do All That You Do For Him

He’s my son.  If he had a broken leg I would take him to the emergency room, then to the doctor, maybe physical therapy.  I would do whatever it took to help it heal properly.  I would do whatever it takes for him to live his best life.   Every parent would.  This isn’t to say that autism is at all like breaking your leg but the same rationale applies.  I do whatever it takes for my son to live his best life with autism.  Because I’m his mom, and until I got asked that question I never thought anything of it, and haven’t since.

what not to say to the parent of a child with autism

But He Makes Eye Contact.  He Can’t be Autistic.

Ross makes eye contact similarly to most neurotypical little kids.   As a parent of a child with autism I know that struggling to make eye contact is not a prerequisite for being autistic.  It is sometimes a symptom, sometimes it is not.  Don’t tell me what my child can or “can’t be” based on your opinion of his eye contact.  Try not to tell me what my child can or can’t be at all.

If Your Child Had Received An Autism Diagnosis Earlier Would You Have Had His Siblings?

This one floored me.  After seeing my initial confused/ shocked reaction she added “or maybe waited a bit?”. My son was diagnosed when my twins were about nine months old so not ideal timing but that was just the diagnosis.  He had always had autism.  The label of autism did not in any way change my child.  The clarity of diagnosis allowed us to better help him, but he was the same.  So this person and I weren’t really talking about him having a diagnosis.  We were talking about him being autistic.  So would I not have more children or wait to have more because my first born was autistic?  No.  For us as a family it did not matter.  For many families I can see how it would change their family planning.  Either way asking someone this is still extraordinarily invasive.

Those are some of the more interesting things people have said to me about my autistic son.  Sometimes these comments are hurtful, sometimes they are just sort of weird.  What interesting things have people said to you? Let me know in the comments then be sure to check out my article on ways to know you are an autism mom.